Thursday, July 30, 2009
Friday, June 26, 2009
I need your stories!!!!!
It seems, these days, each time I make a post I begin with apologizing for how long it has been since my last post.
Perhaps it is time for me to stop apologizing and just say that I will do my best to post as often as possible. March and April were so busy (not complaining) that it took all of May and most of June for me to recover. I am finally starting to feel human again.
This is my down time for the year and it is filled with writing a new book. Not the book I have promised in the past; that had to be put on hold until 2010. This book is called "Finding Your Voice: A Patient Advocacy Workbook" and I am honored to say it is grant funded.
I got the idea to write this book last year when I was giving a workshop at a local retirement community. Two residents were saying that they were uncomfortable with the fact that they didn't have a solid patient advocate nearby; like a child or a spouse. The people who would be advocating for them would be friends and acquaintances and so they doubted the advocates' abilities to know the finer nuances of their wishes. It is my hope that this workbook will provide a resource for friends, acquaintances and even strangers to understood not only the "check the boxes" wishes of the book's owner but to also understand their experiences, beliefs and goals. If we understand these three things, we will be a good advocate.
A secondary but equally important function of this workbook is to allow people filling out the pages to learn more about themselves in the process. Often we have general ideas about things but, when prompted, realize we haven't thought it through all of the way. Sometimes, it takes being asked a question to see your beliefs in a new way. So, while this book is designed to be a tool for the reader it is my hope and belief that it will also be a clarifying and affirming journey for the owner.
Finally, a third purpose to the workbook has emerged and that is to look at all of the ways that we can function as a patient advocate. When we use that term, for most of us, it conjures up images of a person pounding on the nurses station and demanding answers. That is one kind of advocate, one I call "The Tornado Advocate." While this is a valuable person to be or have on your side, this is only one sample of what it might look like to be an effective advocate.
Perhaps you are the person who sits by the bed to comfort the patient in times of fear or overwhelm. Perhaps you are the person who is "behind the scenes" and deals with insurance, bills and other paperwork. Perhaps you are motivated to function less at a personal level and prefer to be involved on a community, state or national level. This are just a few more snapshots of patient advocacy roles; all of them are equal and all of them should be respected.
This workbook will be looking at many different advocacy styles and activities. The book will be broken into "advocating for oneself," "advocating for a child," "advocating for a spouse, sibling or friend" "advocating for a parent," and "advocating for a stranger." In each of these sections there will be stories, tips, refection questions and a place to write action items.
I have already interviewed two wonderful people with great advocacy stories. One woman told me the story of her daughter being diagnosed with CF and not receiving quality care from her local hospital. With determination and passion, this mother did not blindly accept the bad news her doctors gave her but sought out every avenue she could find until she found better care. Today her daughter is 16 and a cheerleader. She attributes her daughter's life to the fact that she got better care and did not accept what she felt in her gut to be incorrect information.
Another woman I spoke to told me about the catch 22 she finds herself in: she makes $1,000 a month which is too much for prescription aid but her co-pays on two medications alone are $850.00 and $400.00. Inspired by her own need and the thought of other patients now and in the future, she has taken her case to the state and national level. With a meticulous and tireless letter writing campaign, she has gotten the attention of her state and US senators. The wheels turn slowly, but she is turning them.
These are just the kinds of stories I need! Do you have any stories about patient advocacy on a personal, community, state or national level? If so, I would love to set up a time to interview you for the workbook. Without your stories, this book simply won't happen.
What are you waiting for? Email me! tiffc73@gmail.com
Thank you as always for your support and generosity. Life is good for me and I hope it is for you too.
Perhaps it is time for me to stop apologizing and just say that I will do my best to post as often as possible. March and April were so busy (not complaining) that it took all of May and most of June for me to recover. I am finally starting to feel human again.
This is my down time for the year and it is filled with writing a new book. Not the book I have promised in the past; that had to be put on hold until 2010. This book is called "Finding Your Voice: A Patient Advocacy Workbook" and I am honored to say it is grant funded.
I got the idea to write this book last year when I was giving a workshop at a local retirement community. Two residents were saying that they were uncomfortable with the fact that they didn't have a solid patient advocate nearby; like a child or a spouse. The people who would be advocating for them would be friends and acquaintances and so they doubted the advocates' abilities to know the finer nuances of their wishes. It is my hope that this workbook will provide a resource for friends, acquaintances and even strangers to understood not only the "check the boxes" wishes of the book's owner but to also understand their experiences, beliefs and goals. If we understand these three things, we will be a good advocate.
A secondary but equally important function of this workbook is to allow people filling out the pages to learn more about themselves in the process. Often we have general ideas about things but, when prompted, realize we haven't thought it through all of the way. Sometimes, it takes being asked a question to see your beliefs in a new way. So, while this book is designed to be a tool for the reader it is my hope and belief that it will also be a clarifying and affirming journey for the owner.
Finally, a third purpose to the workbook has emerged and that is to look at all of the ways that we can function as a patient advocate. When we use that term, for most of us, it conjures up images of a person pounding on the nurses station and demanding answers. That is one kind of advocate, one I call "The Tornado Advocate." While this is a valuable person to be or have on your side, this is only one sample of what it might look like to be an effective advocate.
Perhaps you are the person who sits by the bed to comfort the patient in times of fear or overwhelm. Perhaps you are the person who is "behind the scenes" and deals with insurance, bills and other paperwork. Perhaps you are motivated to function less at a personal level and prefer to be involved on a community, state or national level. This are just a few more snapshots of patient advocacy roles; all of them are equal and all of them should be respected.
This workbook will be looking at many different advocacy styles and activities. The book will be broken into "advocating for oneself," "advocating for a child," "advocating for a spouse, sibling or friend" "advocating for a parent," and "advocating for a stranger." In each of these sections there will be stories, tips, refection questions and a place to write action items.
I have already interviewed two wonderful people with great advocacy stories. One woman told me the story of her daughter being diagnosed with CF and not receiving quality care from her local hospital. With determination and passion, this mother did not blindly accept the bad news her doctors gave her but sought out every avenue she could find until she found better care. Today her daughter is 16 and a cheerleader. She attributes her daughter's life to the fact that she got better care and did not accept what she felt in her gut to be incorrect information.
Another woman I spoke to told me about the catch 22 she finds herself in: she makes $1,000 a month which is too much for prescription aid but her co-pays on two medications alone are $850.00 and $400.00. Inspired by her own need and the thought of other patients now and in the future, she has taken her case to the state and national level. With a meticulous and tireless letter writing campaign, she has gotten the attention of her state and US senators. The wheels turn slowly, but she is turning them.
These are just the kinds of stories I need! Do you have any stories about patient advocacy on a personal, community, state or national level? If so, I would love to set up a time to interview you for the workbook. Without your stories, this book simply won't happen.
What are you waiting for? Email me! tiffc73@gmail.com
Thank you as always for your support and generosity. Life is good for me and I hope it is for you too.
Friday, May 29, 2009
New Adventures: Online Workshops!
As some of you may know, I am lucky enough to have a grant this year which funds some of my workshops and talks.
Next month I am trying something new: online seminars.
I have decided to make my my first webinar available only to CF patients, families and friends. Due to cross infection issues, CF folks can not really come together for seminars anymore and this is my solution to that unfortunate reality.
I have provided the webinar information below. If you would like to pass this info along to other people in the CF Community, I would greatly appreciate it.
Thank you!!!
Tiffany
Project Compassion Presents: "Finding Your Voice in the Healthcare Maze" facilitated by CF patient and two-time double lung transplant recipient, Tiffany Christensen.
In each session, the primary focus will be advocating for yourself or someone you love in a healthcare setting. Secondary topics include advance care planning and the myths and truths of organ/tissue donation.
The webinars will be 3 Saturdays in a row: June 13th, 20th and 27th. They will take place at 3:00pm EST.
Cost:
For CF patients, friends and families within North Carolina, there is no enrollment fee. This webinar is being underwritten by a North Carolina grant and there is no cost.
For CF patients, friends and families within the USA but outside of North Carolina or for those in Canada, the cost is minimal.
To attend all three sessions: $25.00
To attend two of the three sessions: $20.00
To attend one of the three sessions: $10.00
To register visit: fyv.webtrain.com and click on "Browse Upcoming Events" and click "register now" under each session you wish to attend.
You may also register by sending an email directly to Tiffany at tiffany@project-compassion.org. Be sure to include contact information and the sessions you wish to attend.
To pay for registration (only for those outside of North Carolina), please visit:
https://www.merchantamerica.com/projectcompassion/
and click on "Register for the CF Finding Your VoiceWebinar."
To learn more about Tiffany, visit www.sickgirlspeaks.com
Questions may be sent directly to Tiffany at
tiffany@project-compassion.org
Next month I am trying something new: online seminars.
I have decided to make my my first webinar available only to CF patients, families and friends. Due to cross infection issues, CF folks can not really come together for seminars anymore and this is my solution to that unfortunate reality.
I have provided the webinar information below. If you would like to pass this info along to other people in the CF Community, I would greatly appreciate it.
Thank you!!!
Tiffany
Project Compassion Presents: "Finding Your Voice in the Healthcare Maze" facilitated by CF patient and two-time double lung transplant recipient, Tiffany Christensen.
In each session, the primary focus will be advocating for yourself or someone you love in a healthcare setting. Secondary topics include advance care planning and the myths and truths of organ/tissue donation.
The webinars will be 3 Saturdays in a row: June 13th, 20th and 27th. They will take place at 3:00pm EST.
Cost:
For CF patients, friends and families within North Carolina, there is no enrollment fee. This webinar is being underwritten by a North Carolina grant and there is no cost.
For CF patients, friends and families within the USA but outside of North Carolina or for those in Canada, the cost is minimal.
To attend all three sessions: $25.00
To attend two of the three sessions: $20.00
To attend one of the three sessions: $10.00
To register visit: fyv.webtrain.com and click on "Browse Upcoming Events" and click "register now" under each session you wish to attend.
You may also register by sending an email directly to Tiffany at tiffany@project-compassion.org. Be sure to include contact information and the sessions you wish to attend.
To pay for registration (only for those outside of North Carolina), please visit:
https://www.merchantamerica.com/projectcompassion/
and click on "Register for the CF Finding Your VoiceWebinar."
To learn more about Tiffany, visit www.sickgirlspeaks.com
Questions may be sent directly to Tiffany at
tiffany@project-compassion.org
Tuesday, May 19, 2009
Thursday, May 7, 2009
Quick Update and another Top 10
Hello Dear Blog Reading Friends,
Once again this blog has sat silent for a long time while my life took on a hectic pace. I always feel so guilty for not writing and I miss the opportunities to share the things I'm thinking about. I write notes down on scraps of paper to revisit later but it just isn't the same as when the thought is fresh in my head!
I'm not complaining. Things have been busy because my work continues to gain momentum. Honestly, when I take the time to think about that, I find it hard to believe. I feel so lucky.
I want to tell you about the highlights of my travels but I have a meeting to prepare for in just a few minutes. Hopefully, I will have time to write more this weekend.
In the meantime, a facebook friend wanted to see the list of my Top 10 Tips and Tricks for Navigating the Healthcare Maze. You can find that below....
That reminds me to mention, I do a lot of my connecting these days on facebook with pictures, status updates and checking in on other people's comings and goings. If we aren't friends on facebook yet, look me up!
Until next blog, BIG GRATITUDE to you.
Tiffany's Top 10 Tips and Tricks for Navigating the Healthcare Maze
1. Knowledge, Awareness and Boundaries are the first three keys to effective patient advocacy. Gone are the days of relaxing and letting the doctor call all the shots— Be a humble, polite, persistent Squeaky Wheel!
2. Here’s the greatest irony of illness: when you are at your worst is exactly the time when you need to be at your best! If you aren’t up for self-advocacy, bring some one who can do it for you.
3. Being sick is difficult. Be kind to yourself and find ways to process your emotional needs while catering to your physical needs. Healing can happen no matter what the physical outcome.
4. There is power in the Written Word. Use signs whenever you can. Always take notes when getting medical instruction. Keep a list of your medications so you don’t have to repeat yourself.
5. Know the medical hierarchy! If you have a problem with a caregiver, it pays to know where to find their boss!
6. Seek out other patients who have traveled a similar road, they may help you avoid potholes.
7. When you seek out other patients who have traveled similar roads—be careful who you listen to—they may be a pothole.
8. If you go to a surgeon, they will want to do surgery. If you go to a medical doctor, they will want to give you medicine. If you go to an acupuncturist, they will want to give you acupuncture. What do you want to do?
9. Always ask direct questions. Never assume that your doctors are telling you “the whole truth and nothing but the truth” unless you have looked them in the eye and specifically asked what you want to know.
10. Illness is difficult but, if you look hard enough, you might find it also offers opportunities for growth, gratitude and joy.
Once again this blog has sat silent for a long time while my life took on a hectic pace. I always feel so guilty for not writing and I miss the opportunities to share the things I'm thinking about. I write notes down on scraps of paper to revisit later but it just isn't the same as when the thought is fresh in my head!
I'm not complaining. Things have been busy because my work continues to gain momentum. Honestly, when I take the time to think about that, I find it hard to believe. I feel so lucky.
I want to tell you about the highlights of my travels but I have a meeting to prepare for in just a few minutes. Hopefully, I will have time to write more this weekend.
In the meantime, a facebook friend wanted to see the list of my Top 10 Tips and Tricks for Navigating the Healthcare Maze. You can find that below....
That reminds me to mention, I do a lot of my connecting these days on facebook with pictures, status updates and checking in on other people's comings and goings. If we aren't friends on facebook yet, look me up!
Until next blog, BIG GRATITUDE to you.
Tiffany's Top 10 Tips and Tricks for Navigating the Healthcare Maze
1. Knowledge, Awareness and Boundaries are the first three keys to effective patient advocacy. Gone are the days of relaxing and letting the doctor call all the shots— Be a humble, polite, persistent Squeaky Wheel!
2. Here’s the greatest irony of illness: when you are at your worst is exactly the time when you need to be at your best! If you aren’t up for self-advocacy, bring some one who can do it for you.
3. Being sick is difficult. Be kind to yourself and find ways to process your emotional needs while catering to your physical needs. Healing can happen no matter what the physical outcome.
4. There is power in the Written Word. Use signs whenever you can. Always take notes when getting medical instruction. Keep a list of your medications so you don’t have to repeat yourself.
5. Know the medical hierarchy! If you have a problem with a caregiver, it pays to know where to find their boss!
6. Seek out other patients who have traveled a similar road, they may help you avoid potholes.
7. When you seek out other patients who have traveled similar roads—be careful who you listen to—they may be a pothole.
8. If you go to a surgeon, they will want to do surgery. If you go to a medical doctor, they will want to give you medicine. If you go to an acupuncturist, they will want to give you acupuncture. What do you want to do?
9. Always ask direct questions. Never assume that your doctors are telling you “the whole truth and nothing but the truth” unless you have looked them in the eye and specifically asked what you want to know.
10. Illness is difficult but, if you look hard enough, you might find it also offers opportunities for growth, gratitude and joy.
Thursday, April 16, 2009
Ten Opportunities of Illness
Illness is one of life’s most difficult challenges. There is no denying the impact physical disabilities can have on one’s professional life, relationships and self-esteem. All of these issues require exploration and nurturing.
At the same time, there is a side to illness that we often ignore: The gifts.
While we must acknowledge the feelings of loss and frustration that inevitably accompany illness, we may also open up to the opportunities of growth, understanding, and gratitude that illness can provide.
• I Am Not Illness: We know that the body and mind have a strong connection, and there is power there, but let’s also connect with the separation between body, mind, and spirit. What does it mean to “be sick”? Is it possible to suffer physically while suffering less (or not at all) emotionally/spiritually? Is there a differentiation between “healing” and “medicating”? While illness often takes up much of our lives, we are not illness. Our body is sick, yes, but there is a place within us that is never sick, never scared and never tired. Illness gives us the rare opportunity to find this place deep within us and discover our identity in a whole new way.
• Taking Control: If you spend enough time in healthcare settings, it is almost impossible to ignore the value of patient empowerment through patient advocacy. Through our own knowledge, awareness and ability to set boundaries, we become our most powerful caregiver. In a room of experts, we are the foremost authority on our own body and experiences. By embracing this role, we have an opportunity to take control even when life feels completely out of our control.
• Still Body, Forward Mind: As our bodies become less able, we can find strategic ways to use limitations as a motivation to explore the unexplored. As an example, illness may allow us to take a risk, working with paint or putting pen to paper, as way to express our feelings and discover new understandings of the self. While this may not have been something we would have considered as a fully healthy-bodied person, we may now find joy in unexpected activities and practices.
• Self-Help: Coping with pain and other physical discomforts can be overwhelming. Are there other techniques, outside of Western medications, that can aid in decreasing discomfort? Perhaps we might discover meditation or acupuncture can help us with pain, therefore decreasing the need for more “chemicals” getting added to the mix. If nothing else, we must find ways to alleviate our emotional discomforts to help ourselves have the highest quality of life possible.
• Why Me?: People facing illness often find themselves in a crisis of faith. “Is God punishing me?” is a common question people ask. Illness may provide us an opportunity to explore our faith deeper and more authentically. It may even open doors to new spiritual traditions. For all of us, even if the objective is not to find a way back to faith, we can all find a connection with That Which Is Important. Ideally, one might even discover a greater purpose to their suffering.
• Equal Opportunity Compassion: People dealing with illness may feel depressed and cheated. This is normal reaction and should not be judged. However, when the time is right, it is possible to transform self-pity into compassion for the self. From there, it is a natural step to experience true compassion for others. This is a fulfilling life choice that can be made despite any physical limitation. Once you have experienced your own suffering, you have increased your capacity to care for those suffering with similar or different challenges.
• Loving Through Illness: Difficulty can make people grow apart or grow stronger together. It is undeniable that illness can put a strain on relationships. People will react very differently and sometimes those reactions are painful. What is important to know, is that despite illness, relationships remain a two way street. Armed with compassion for ourselves and those we love, we can examine our own conscious or unconscious expectations; honoring the various roles people play during illness and work to build, not tear down, bridges.
• Transforming The Illness Identity Crisis: There is something that happens when a person becomes sick and they lose their sense of purpose. Those around the patient have difficulty knowing how best to relate to them as they no longer have the same activities and interests. Tiffany refers to this as The Illness Identity Crisis. Illness provides us with the opportunity of realizing who we are beyond our self labels. We can strive for a deeper knowledge of self. By giving ourselves the task of creating internal projects to better ourselves, we are defining our purpose and connecting with our evolving identity.
• Saying Goodbye My Way: We all must leave this earth at some time and in some way. There is one undeniable benefit to being sick: the opportunity to plan ahead. When a person is taken unexpectedly, there is no time to say goodbye or talk about their wishes. Illness allows us to talk about final desires (advance care planning) and even planning how we would like to be memorialized. There are healing qualities of writing our own obituary and eulogy, even if we are not facing terminal illness. This type of “framing” will help us live a more purpose-driven life. Above all, we have the opportunity to express to our friends and family what we want them to know and remember about our love for them.
• Gratitude without Limits: After a person comes to a place of acceptance with illness, the next step is moving into gratitude. Illness gives us the gift to consciously embrace the unique experiences of living on earth. As we continue to open our eyes to That Which Is Important, we can find appreciation for life in places that most people would never even notice. Through our struggles, we may discover ways to use gratitude as a source of joy, despite any illness we may be dealing with.
At the same time, there is a side to illness that we often ignore: The gifts.
While we must acknowledge the feelings of loss and frustration that inevitably accompany illness, we may also open up to the opportunities of growth, understanding, and gratitude that illness can provide.
• I Am Not Illness: We know that the body and mind have a strong connection, and there is power there, but let’s also connect with the separation between body, mind, and spirit. What does it mean to “be sick”? Is it possible to suffer physically while suffering less (or not at all) emotionally/spiritually? Is there a differentiation between “healing” and “medicating”? While illness often takes up much of our lives, we are not illness. Our body is sick, yes, but there is a place within us that is never sick, never scared and never tired. Illness gives us the rare opportunity to find this place deep within us and discover our identity in a whole new way.
• Taking Control: If you spend enough time in healthcare settings, it is almost impossible to ignore the value of patient empowerment through patient advocacy. Through our own knowledge, awareness and ability to set boundaries, we become our most powerful caregiver. In a room of experts, we are the foremost authority on our own body and experiences. By embracing this role, we have an opportunity to take control even when life feels completely out of our control.
• Still Body, Forward Mind: As our bodies become less able, we can find strategic ways to use limitations as a motivation to explore the unexplored. As an example, illness may allow us to take a risk, working with paint or putting pen to paper, as way to express our feelings and discover new understandings of the self. While this may not have been something we would have considered as a fully healthy-bodied person, we may now find joy in unexpected activities and practices.
• Self-Help: Coping with pain and other physical discomforts can be overwhelming. Are there other techniques, outside of Western medications, that can aid in decreasing discomfort? Perhaps we might discover meditation or acupuncture can help us with pain, therefore decreasing the need for more “chemicals” getting added to the mix. If nothing else, we must find ways to alleviate our emotional discomforts to help ourselves have the highest quality of life possible.
• Why Me?: People facing illness often find themselves in a crisis of faith. “Is God punishing me?” is a common question people ask. Illness may provide us an opportunity to explore our faith deeper and more authentically. It may even open doors to new spiritual traditions. For all of us, even if the objective is not to find a way back to faith, we can all find a connection with That Which Is Important. Ideally, one might even discover a greater purpose to their suffering.
• Equal Opportunity Compassion: People dealing with illness may feel depressed and cheated. This is normal reaction and should not be judged. However, when the time is right, it is possible to transform self-pity into compassion for the self. From there, it is a natural step to experience true compassion for others. This is a fulfilling life choice that can be made despite any physical limitation. Once you have experienced your own suffering, you have increased your capacity to care for those suffering with similar or different challenges.
• Loving Through Illness: Difficulty can make people grow apart or grow stronger together. It is undeniable that illness can put a strain on relationships. People will react very differently and sometimes those reactions are painful. What is important to know, is that despite illness, relationships remain a two way street. Armed with compassion for ourselves and those we love, we can examine our own conscious or unconscious expectations; honoring the various roles people play during illness and work to build, not tear down, bridges.
• Transforming The Illness Identity Crisis: There is something that happens when a person becomes sick and they lose their sense of purpose. Those around the patient have difficulty knowing how best to relate to them as they no longer have the same activities and interests. Tiffany refers to this as The Illness Identity Crisis. Illness provides us with the opportunity of realizing who we are beyond our self labels. We can strive for a deeper knowledge of self. By giving ourselves the task of creating internal projects to better ourselves, we are defining our purpose and connecting with our evolving identity.
• Saying Goodbye My Way: We all must leave this earth at some time and in some way. There is one undeniable benefit to being sick: the opportunity to plan ahead. When a person is taken unexpectedly, there is no time to say goodbye or talk about their wishes. Illness allows us to talk about final desires (advance care planning) and even planning how we would like to be memorialized. There are healing qualities of writing our own obituary and eulogy, even if we are not facing terminal illness. This type of “framing” will help us live a more purpose-driven life. Above all, we have the opportunity to express to our friends and family what we want them to know and remember about our love for them.
• Gratitude without Limits: After a person comes to a place of acceptance with illness, the next step is moving into gratitude. Illness gives us the gift to consciously embrace the unique experiences of living on earth. As we continue to open our eyes to That Which Is Important, we can find appreciation for life in places that most people would never even notice. Through our struggles, we may discover ways to use gratitude as a source of joy, despite any illness we may be dealing with.
Saturday, March 28, 2009
As I drove today, I thought...
Compassion can not happen in the presence of judgment.
If you criticize yourself internally, you will criticize others externally.
Until you stop judging yourself, you will not be able to be a compassionate person.
How will you stop the internal critic?
How important is it to you to be compassionate to your fellow humans?
Can you live in a world with only observation and no judgment?
If you criticize yourself internally, you will criticize others externally.
Until you stop judging yourself, you will not be able to be a compassionate person.
How will you stop the internal critic?
How important is it to you to be compassionate to your fellow humans?
Can you live in a world with only observation and no judgment?
Tuesday, March 24, 2009
Tiffany's Trust Mantras...pick as needed!
Today, as I feel this pain, I worry that I will never have a day without pain again.
I remind myself that on earth nothing is permanent and this pain will not always be with me.
I trust that this state of pain will not last forever and I will again have peace.
Today, as I feel this grief, I worry that I will never be happy again.
I remind myself that on earth nothing is permanent and this grief will not always be with me.
I trust that this intense grief will not last forever and I will again have peace.
Today, as I feel so alone, I worry that I will never have the support I need again.
I remind myself that on earth nothing is permanent and I will not always need this support and other people will not always feel so distant.
I trust that this feeling of loneliness will not last forever and I will again have peace.
Today, as I feel so scared, I worry that I will never be able to overcome this fear.
I remind myself that on earth nothing is permanent and I will find a way to handle what is filling me with fear, or it will change and no longer be so scary.
I trust that this state of fear will not last forever and I will again have peace.
Today, as I face the unknown, I worry that my life will never be the same again.
I remind myself that on earth nothing is permanent and it will change no matter what, even if this current unknown turns out to be benign.
I trust that this state of instability will not last forever and I will again have peace.
Today, as I feel so bored, I worry that I will never feel invigorated again.
I remind myself that on earth nothing is permanent and I will become engaged in life again.
I trust that this state of boredom will not last forever and I will again have peace.
Today, as I feel this fatigue, I worry that I will never have a day when I have passion for life again.
I remind myself that on earth nothing is permanent and I will have energy again.
I trust that I will not feel tired forever and I will again have peace.
I remind myself that on earth nothing is permanent and this pain will not always be with me.
I trust that this state of pain will not last forever and I will again have peace.
Today, as I feel this grief, I worry that I will never be happy again.
I remind myself that on earth nothing is permanent and this grief will not always be with me.
I trust that this intense grief will not last forever and I will again have peace.
Today, as I feel so alone, I worry that I will never have the support I need again.
I remind myself that on earth nothing is permanent and I will not always need this support and other people will not always feel so distant.
I trust that this feeling of loneliness will not last forever and I will again have peace.
Today, as I feel so scared, I worry that I will never be able to overcome this fear.
I remind myself that on earth nothing is permanent and I will find a way to handle what is filling me with fear, or it will change and no longer be so scary.
I trust that this state of fear will not last forever and I will again have peace.
Today, as I face the unknown, I worry that my life will never be the same again.
I remind myself that on earth nothing is permanent and it will change no matter what, even if this current unknown turns out to be benign.
I trust that this state of instability will not last forever and I will again have peace.
Today, as I feel so bored, I worry that I will never feel invigorated again.
I remind myself that on earth nothing is permanent and I will become engaged in life again.
I trust that this state of boredom will not last forever and I will again have peace.
Today, as I feel this fatigue, I worry that I will never have a day when I have passion for life again.
I remind myself that on earth nothing is permanent and I will have energy again.
I trust that I will not feel tired forever and I will again have peace.
Thursday, March 12, 2009
A Letter to my donor family
To My Dearest Donor Family,
I was driving down the road today and the sun was shining and I had the radio on full blast. I was singing at the top of my lungs and couldn't help but notice how strong my voice was and how effortless is was to sing. In that moment I was struck with such joy and gratitude that my eyes welled up with tears. I have a lot of moments like that one.
I was born with a genetic illness called cystic fibrosis. This disease primarily effected my lungs, causing constant infections and difficulty breathing. By the time I was 21, my illness was end stage. I was dying and I hadn't even been able to graduate from college. If it hadn't been for the gift of my first set of donor lungs in 2000, I would not have lived to see my 27th birthday.My life changed completely that day; I did not know what it felt like to take a deep breath until I had a lung transplant.
My life changed again only 2 years later when the doctors told me that my lungs were failing and I was getting very sick very quickly. I was devastated. I couldn't understand why I had been given this amazing gift only to have it taken before I had the chance to do the gift justice. I had not made a positive impact on the world in the way I felt someone with my good fortune ought to do.
Through a series of unusual events, my doctors decided to put me on the list for a second lung transplant. At that point, I had less than 6 months to live and no one was sure I could hold out until a donor became available.
On March 28, 2004 a precious life was taken from you and a precious gift was given to me. I was 30 years old and I had been given one more shot at making a meaningful life. Your loved one's lungs seemed to be very compatible with my body and I had a relatively easy recovery from my second transplant. As soon as I woke up in ICU I began planning for how I would honor you, your loved one and my loved ones by giving back to people who's lives have been touched by illness and loss. Since the moment I left the hospital, I have done everything I can to not waste a moment of time.
There are no words to express the gratitude I feel for the profound and compassionate choice you made on such a dark day in your life. I can only imagine your pain and am in awe of your ability to think of others during a time of such grief.
As the fifth anniversary of your loss and my rebirth approaches, you are often on my mind. I wish that I could take away your pain but I know this is a silly thing to wish for. I can hope that there is comfort in knowing that your loved one has saved lives but I know this may not always bring comfort. All I can do is live each day with gratitude in my heart for you and by singing with joy at every chance I get.
My heart goes out to you at this time. On behalf of myself, my friends and my family, I thank you from the bottom of my toes for your generosity.
All my love and respect,
Tiffany
I was driving down the road today and the sun was shining and I had the radio on full blast. I was singing at the top of my lungs and couldn't help but notice how strong my voice was and how effortless is was to sing. In that moment I was struck with such joy and gratitude that my eyes welled up with tears. I have a lot of moments like that one.
I was born with a genetic illness called cystic fibrosis. This disease primarily effected my lungs, causing constant infections and difficulty breathing. By the time I was 21, my illness was end stage. I was dying and I hadn't even been able to graduate from college. If it hadn't been for the gift of my first set of donor lungs in 2000, I would not have lived to see my 27th birthday.My life changed completely that day; I did not know what it felt like to take a deep breath until I had a lung transplant.
My life changed again only 2 years later when the doctors told me that my lungs were failing and I was getting very sick very quickly. I was devastated. I couldn't understand why I had been given this amazing gift only to have it taken before I had the chance to do the gift justice. I had not made a positive impact on the world in the way I felt someone with my good fortune ought to do.
Through a series of unusual events, my doctors decided to put me on the list for a second lung transplant. At that point, I had less than 6 months to live and no one was sure I could hold out until a donor became available.
On March 28, 2004 a precious life was taken from you and a precious gift was given to me. I was 30 years old and I had been given one more shot at making a meaningful life. Your loved one's lungs seemed to be very compatible with my body and I had a relatively easy recovery from my second transplant. As soon as I woke up in ICU I began planning for how I would honor you, your loved one and my loved ones by giving back to people who's lives have been touched by illness and loss. Since the moment I left the hospital, I have done everything I can to not waste a moment of time.
There are no words to express the gratitude I feel for the profound and compassionate choice you made on such a dark day in your life. I can only imagine your pain and am in awe of your ability to think of others during a time of such grief.
As the fifth anniversary of your loss and my rebirth approaches, you are often on my mind. I wish that I could take away your pain but I know this is a silly thing to wish for. I can hope that there is comfort in knowing that your loved one has saved lives but I know this may not always bring comfort. All I can do is live each day with gratitude in my heart for you and by singing with joy at every chance I get.
My heart goes out to you at this time. On behalf of myself, my friends and my family, I thank you from the bottom of my toes for your generosity.
All my love and respect,
Tiffany
Wednesday, March 11, 2009
Top 10 Ways to Know You Have Found Yourself a Good Doctor
This morning, I am off to teach 160 medical students who are graduating and beginning their residency. These are the days I live for!! I created another Top 10 List for them...
1. A good doctor will make you feel like you have a partner in your efforts to get well.
2. A good doctor will care about your whole life, not just your physical problems.
3. A good doctor knows that practicing medicine is about relationships so they will look you in the eye and communicate in a compassionate but concise manner.
4. A good doctor will be your advocate within our complicated system and use his/her position to improve your quality of life.
5. A good doctor will listen to your story like a detective, picking up illness clues as you go along, so that they may solve your illness mystery. And they will do this even when they are in a hurry.
6. A good doctor will be skillful, brave and meticulous while somehow managing to stay humble.
7. A good doctor knows when to think outside the box or bend the rules for the good of the patient/family.
8. A good doctor understands that, sometimes, holding a patient’s hand through difficult times is just as important as prescribing the proper dosage of medication.
9. A good doctor discovers that in order to be an extraordinary caregiver, they must learn how to take good care of themselves first.
10. A good doctor understands that, in their practice, they walk a line between science and mystery every day.
Tuesday, March 10, 2009
Doctors Make Me Giddy
In an article entitled "Living with chronic illness: a phenomenological study of the health effects of the patient-provider relationship," Chesla C. Fox noted that chronically ill women who reported a connected relationship with a health care provider and viewed their care as a partnership had more confidence and motivation to manage their illness and a greater sense of well-being. More and more studies like this one are popping up and telling us that the inter-personal relationships between patients and caregivers are key in the treatment outcome. It seems silly to say that patients will be more compliant if they like their doctor, but it is a fact.
The Junior High Effect
One of the rarely discussed but often difficult parts of many medical treatments is the effect on one's ability to go to the bathroom. Anesthesia and narcotics can make a person unable to go to the bathroom while some other meds will cause frequent, unpleasant and unwelcome trips. Talking about poo and pee is not encouraged in this culture (is it in other cultures?) but, rest assured, this is a major issue for many people dealing with illness and medicines. For those who are suffering with stomach issues, it really can be unbelievably miserable.
After my first transplant, it took a long time for my stomach to recover from the anesthesia. In fact, I was eating with no "output" for 14 days. Yes, two weeks. I had a raging and insatiable appetite from the steroids and, despite my condition, continued to eat and eat long after I had become a 'Buddha Belly.' It was rather astonishing how much my stomach expanded and I can honestly tell you, I rarely thought of much else. When I wasn't shoveling food in, I was lamenting what I had just eaten. I walked the halls as much as possible trying to make things move. It ranged from highly uncomfortable to almost unbearable.
By week two, I was obsessed with my stomach and growing increasingly irritable. I was snapping at everyone who came in the room. Everyone, that is, except my doctors. Somehow, when the doctors were rounding, I was able to turn on my happy patient face. We laughed and joked about my misery and being F.O.S. (full of shit). No matter how bad I felt, when they walked in my mood and demeanor did an about-face.
I wasn't playing a game and I wasn't even faking my cheer. When I saw my team walk in the door, I really did feel an energy boost. And it wasn't just me. When the docs came in, my father became very talkative and jovial. My mother became sweet and proper. My sisters beamed with gratitude and smiled widely. My brother became very professional and authoritative. Each of us changed in a very noticeable way when the doctors came by. The family picture they saw when they walked in my hospital room was not a false one but it wasn't an entirely natural one either.
So what is that about? Why did I go from whining, complaining and crying to laughing and grinning just because men with white coats walked in the room? Why did my whole family change their tune? I can only think of one explanation. This is a result of The Junior High effect.
As much as we would like to believe that we are all grown up now, the truth is we will forever carry with us a piece of junior high. Those were the days when all that mattered was who was popular, who had cooties and where you fit in the pecking order. In those days, a good day might have been marked by the most popular girl in school asking if she could borrow your pencil and actually knowing your name. A bad day would have been when the most popular boy in school said you stuffed your bra. Whether you were a jock, nerd or drama kid, the impressions of social ranking were branded on our brains during our time in junior high.
When my doctors walk in the room, I am the geek and they are the cool kids. I am excited by the attention they are paying me and this emotion masks some of my physical problems. I want them to like me, to praise me and to accept me as one of them. Over the years, my reaction to this desire for acceptance has varied. Nonetheless, whether I was rebelling against their power over me or trying to prove I was worthy of prom queen, the person they saw before them was not always "the real me." Considering the amount to which physicians rely on observation in treating patients, this is worthy of noting. So, to the "cool kids," what you see may not be what others see when you leave the room.
Do You See Me?
I have been seeing some of the same doctors for nearly 20 years. They have seen me sick and they have seen me healthy. They have seen me in the depths of depression and on top of the world. More than anything, they have seen me at my most vulnerable.
Perhaps it is that past vulnerability that drives me to "prove" to them that I am now strong. Recently, I sent my doctors and nurses an email about a talk I was doing in the hospital. It really had nothing to do with them, I was going to be speaking to medical students. So why did I send the email? Because I want them to see me, to see the person I have become. I want them to witness my work and approve of me. Like a little child, I want them to be proud of me.
They, perhaps even more so than I, know the fragility of my life. Because of this, they may never see me as I see myself and that bothers me. I spent so long living a smaller life than I was capable of, I want them to now understand my true potential. I want them to see me differently. I want them to stop viewing me as "just a patient" and see me as a colleague of sorts.
It has only been within the last year that I have been able to see my doctors as human beings and not superheroes or villains, as the case may be. Perhaps with time, as I continue to pull back the curtain, I will find they do see me as a whole person. Or, even better, perhaps one day I will overcome my childish need for their approval and just appreciate our relationships just as they are.
What I Know Now
I hate to add more weight to an already heavy load, but being a good healthcare professional is not only about being skillful with medicine. There is immense power in the patient/caregiver relationship. A physician's interest in a patient's well being can inspire a desire to be compliant and even spark a person's will to live. Equally, a lack of interest can make a patient feel isolated and without the support needed to make a valiant effort at getting well.
Whether you like it or not, healthcare professionals are often regarded as the top of the line in human beings. An encouraging word or a snide comment can make all the difference to those who admire them. When we are weak, we may rely on the strength of the professionals around us. When we are well, we may seek to prove ourselves worthy of their care. Being an effective nurse or doctor means being willing to also be a friend and a parent. Being Student Body President isn't easy.
The Junior High Effect
One of the rarely discussed but often difficult parts of many medical treatments is the effect on one's ability to go to the bathroom. Anesthesia and narcotics can make a person unable to go to the bathroom while some other meds will cause frequent, unpleasant and unwelcome trips. Talking about poo and pee is not encouraged in this culture (is it in other cultures?) but, rest assured, this is a major issue for many people dealing with illness and medicines. For those who are suffering with stomach issues, it really can be unbelievably miserable.
After my first transplant, it took a long time for my stomach to recover from the anesthesia. In fact, I was eating with no "output" for 14 days. Yes, two weeks. I had a raging and insatiable appetite from the steroids and, despite my condition, continued to eat and eat long after I had become a 'Buddha Belly.' It was rather astonishing how much my stomach expanded and I can honestly tell you, I rarely thought of much else. When I wasn't shoveling food in, I was lamenting what I had just eaten. I walked the halls as much as possible trying to make things move. It ranged from highly uncomfortable to almost unbearable.
By week two, I was obsessed with my stomach and growing increasingly irritable. I was snapping at everyone who came in the room. Everyone, that is, except my doctors. Somehow, when the doctors were rounding, I was able to turn on my happy patient face. We laughed and joked about my misery and being F.O.S. (full of shit). No matter how bad I felt, when they walked in my mood and demeanor did an about-face.
I wasn't playing a game and I wasn't even faking my cheer. When I saw my team walk in the door, I really did feel an energy boost. And it wasn't just me. When the docs came in, my father became very talkative and jovial. My mother became sweet and proper. My sisters beamed with gratitude and smiled widely. My brother became very professional and authoritative. Each of us changed in a very noticeable way when the doctors came by. The family picture they saw when they walked in my hospital room was not a false one but it wasn't an entirely natural one either.
So what is that about? Why did I go from whining, complaining and crying to laughing and grinning just because men with white coats walked in the room? Why did my whole family change their tune? I can only think of one explanation. This is a result of The Junior High effect.
As much as we would like to believe that we are all grown up now, the truth is we will forever carry with us a piece of junior high. Those were the days when all that mattered was who was popular, who had cooties and where you fit in the pecking order. In those days, a good day might have been marked by the most popular girl in school asking if she could borrow your pencil and actually knowing your name. A bad day would have been when the most popular boy in school said you stuffed your bra. Whether you were a jock, nerd or drama kid, the impressions of social ranking were branded on our brains during our time in junior high.
When my doctors walk in the room, I am the geek and they are the cool kids. I am excited by the attention they are paying me and this emotion masks some of my physical problems. I want them to like me, to praise me and to accept me as one of them. Over the years, my reaction to this desire for acceptance has varied. Nonetheless, whether I was rebelling against their power over me or trying to prove I was worthy of prom queen, the person they saw before them was not always "the real me." Considering the amount to which physicians rely on observation in treating patients, this is worthy of noting. So, to the "cool kids," what you see may not be what others see when you leave the room.
Do You See Me?
I have been seeing some of the same doctors for nearly 20 years. They have seen me sick and they have seen me healthy. They have seen me in the depths of depression and on top of the world. More than anything, they have seen me at my most vulnerable.
Perhaps it is that past vulnerability that drives me to "prove" to them that I am now strong. Recently, I sent my doctors and nurses an email about a talk I was doing in the hospital. It really had nothing to do with them, I was going to be speaking to medical students. So why did I send the email? Because I want them to see me, to see the person I have become. I want them to witness my work and approve of me. Like a little child, I want them to be proud of me.
They, perhaps even more so than I, know the fragility of my life. Because of this, they may never see me as I see myself and that bothers me. I spent so long living a smaller life than I was capable of, I want them to now understand my true potential. I want them to see me differently. I want them to stop viewing me as "just a patient" and see me as a colleague of sorts.
It has only been within the last year that I have been able to see my doctors as human beings and not superheroes or villains, as the case may be. Perhaps with time, as I continue to pull back the curtain, I will find they do see me as a whole person. Or, even better, perhaps one day I will overcome my childish need for their approval and just appreciate our relationships just as they are.
What I Know Now
I hate to add more weight to an already heavy load, but being a good healthcare professional is not only about being skillful with medicine. There is immense power in the patient/caregiver relationship. A physician's interest in a patient's well being can inspire a desire to be compliant and even spark a person's will to live. Equally, a lack of interest can make a patient feel isolated and without the support needed to make a valiant effort at getting well.
Whether you like it or not, healthcare professionals are often regarded as the top of the line in human beings. An encouraging word or a snide comment can make all the difference to those who admire them. When we are weak, we may rely on the strength of the professionals around us. When we are well, we may seek to prove ourselves worthy of their care. Being an effective nurse or doctor means being willing to also be a friend and a parent. Being Student Body President isn't easy.
Friday, March 6, 2009
Googling Grief
A few months ago was the one year anniversary for the death of a beloved friend. Today I was thinking of her and missing her presence. On a whim, I decided to google her name. Being that she was a smart and active woman, there were lists of articles written about her and by her. Some had pictures and some had only her words. Through the tears in my eyes I felt the closeness I had been longing only a moment before. Here she was, in front of me, speaking through words of days past. It was as though we had been able to share a cup of coffee for just a little while. Somehow, with her image and language only a key stroke away, my grief was soothed.
I have been noticing other ways in which the power of the internet is gently influencing the grieving process. I am one of the millions of facebook addicts in this country and rely on it for way too much of my own socialization. For those who don't know, Facebook is an online networking site that makes it easy to keep in touch with hundreds of people at once, and yet somehow manage to create the feeling of closeness.
In the past year, I have had several facebook friends die. Because of the rules of facebook, the only person that can close down a facebook profile is the person themselves. This means when a person dies, the facebook page will remain. What I didn't expect was how people would continue to use that facebook page.
In all of the instances I have witnessed, people continue to write on the "wall" of the deceased person's profile. Sometimes they are sharing a funny memory the two had shared that made them smile that day. Some days they will express their deepest sadness and difficulties with getting through that day without the one they love. Other times, they will simply stop by and say "hi." In all of these postings, the grieving are speaking directly to the dead, without any sense of embarrassment or awkwardness. They are not talking about their loved one, they are talking to their loved one.
It is, in a way, the cyber version of a grave stone. A central place to go where a person's energy is stored and all who knew them are welcome to visit. It is a place to cry and share. It is a place to tell the ones we love we still care and they are not forgotten. It is, in my opnion, beautiful and unique. In a culture where we have so few ways to openly process our grief, there on facebook, we are loving those who left us behind.
I don't have profound words about the social implications of this new trend. I don't know really how it fits into our cultural grieving paradigm. All I know is that today I visited my friend on the Internet and it helped me feel close to her. When I go to the facebook profiles of those I love, I somehow feel like I am walking in the footprints they left behind. This, I think, is healing.
Thursday, March 5, 2009
Letting Go of Oprah
I was curled in a ball on the couch under a pile of blankets. My fever was just high enough to make me slightly shiver. I closed my eyes and tried to relax my muscles and my mind. I knew the Tylenol would kick in shortly and I trusted this moment would soon pass. At the same time, this physical feeling and body posture was undeniably familiar, therefore transporting me back to countless times of illness in the past.
I had a strong suspicion that what I was feeling was a result of acute rejection. Unlike chronic rejection, the illness that made it necessary for me to have a second transplant, acute is usually treatable with heavy doses of steroids. Intellectually, I understood that there was little reason for grave concern. Despite this, I did not resist the impulse to allow my thoughts to travel into the realm of worst case scenario. What if this was something serious? What if I was facing my third terminal illness? What if this was the first day of the ending of my life? What if all of my healthiest moments were behind me?
To some, this might seem like a ridiculous and morbid road to travel. After all, I am normally quite a positive person who holds true to the motto: "Be optimistic now, you can always cry later." But for me, for where I have been in my emotional and spiritual journey, pondering the end does not feel morbid or ridiculous at all. Walking beside the presence of death has become second nature to me and thinking about it in such concrete terms is only one mental step forward in consciousness from where I operate normally.
So, under my pile of blankets, I took that step into "what if" and was slightly surprised by my own reaction. The more I thought about shedding this "mortal coil" the more my body relaxed. I was practically melting into the fibers of the couch cushions. Stress was draining out of me and I was feeling a sense of relief I did not even know I needed. All of the obligations, the pressures and the striving for goals were transforming in the fantasy of my life coming to a close. Most of what mattered moments before no longer seemed to be of such value. I was becoming free again.
We all have stories and beliefs we function by. Some of these we may be aware of and others we may not. Certainly, after my experiences, there are many reasons for the work I do and how I do it. Stories play in my mind and tell me that "I must do all I can, while I can" and that I "have a mission." These are inspiring and humbling thoughts that drive my every day attitude and work ethic. What I learned on the couch that day, as stress evaporated along with my fever, is the interpretation of these internal stories needed some serious attention.
For the sake of argument, let's say that I am correct in believing that I have a mission and should do as much as I can regarding that mission while I am here on earth. Let's also say that there is nothing wrong with this as a basic core belief. But how then am I defining the mission and what does it mean to "do all I can"? This is where my feet may have fallen off of the path and ego took over. I shaped the definitions to these things early on in my career and they were all based on external confirmation of my worth. There was a staircase of ways to the top, and the top was Oprah. When I reached her, I would have fulfilled my destiny!
It sounds silly to say out loud now, but I developed a strong attachment to the goal of being on Oprah. As time ticked by, I was becoming more and more impatient and disappointed that Oprah was still nowhere in reach for me. Oprah was in my mind when I wrote, spoke and made plans for my career. At the time, I had no idea that Oprah was tormenting me.
It wasn't until I felt the weight of the Oprah Goal lift from my neck and shoulders that I understood that, what was once an innocent dream, had become a burden too heavy to carry. By being attached to such a specific and lofty goal, I had stopped concentrating on the mission and mostly focused on the outcome. In doing this, I was not only causing myself undue stress but I was missing out on the brilliance of my own life as it was without Oprah.
As a sick person, I am surrounded by the meters of success our culture provides. As a sick person, I have often felt I did not measure up to many of these. To have a college degree, to own a home, to travel the world, to have a full time job--these are the archetypal images I have of what it means to be a grown up. Oprah was going to be my fast track to getting full grown up status. Once again, however, I am now grateful for the wisdom of illness as I look back on the lessons I have learned from a lifetime of being sick and attempting to find worth in an occupation.
Faking It
When I was 16, one of my first jobs was in a sandwich shop. I prepared the sandwiches in front of the customers and one day I had a coughing fit while doing so. My cough sounded horrible even though I was not really contagious and, not surprisingly, the customer refused the sandwich. After a brief confrontation, he left the cafe. I was embarrassed, hurt and confused. My boss was unbelievably kind about the whole thing and encouraged me to not let that one person make me feel bad about myself. What a wonderful man! But I was also not stupid, as much as I tried, I could never stifle the cough when customers were around. Food prep was probably not a good place for me to be.
My next job was in a book store which seemed like a much safer environment. One day I was not feeling well and I was checking people out at the register. I must have had a surly look on my face because the customer told me I "try should smiling sometime." I was taken aback and was not aware that I looked so unpleasant that I deserved this public facial reprimand. Sometimes, when we are very sick, it is all we can do to speak, stand and shuffle the papers around. I simply didn't have it in me to smile too.
In both of these early work experiences, I learned the expectations of those around me were that I should appear and act "normal." Being that I wasn't normal, this caused me stress and I sought elaborate coping mechanisms to fake it. Each job search came with its own questions of places to escape if I needed to cough, public interaction and flexibility of sick time. The pressure I felt to be normal also started me down the path of major overcompensation, meaning I would have rather crawled to work than call in sick.
Balancing It
As time went on, cystic fibrosis became a bigger and bigger part of my existence and the line between life and work grew thinner and thinner. With the strong drive to continue faking it and to appear "normal" (aka employed) sacrifices had to be made somewhere. As my body grew weaker, these sacrifices became more dramatic. It came to a point, when I was trying to live the dream of being and actor and a director, that my days revolved around the next rehearsal or performance.
Each day, I would sleep as much as I could in order to have enough energy for the theater. I did treatments religiously, not so much for myself, but to stay in the game. During a show's run, I would hold out on going into the hospital or getting home IV medications. As a result, each show's closing was followed by a trip to the emergency room and a three week hospital stay. This all seemed perfectly worth it to me.
I'm not judging this approach to living and working with illness. Who knows what is best when you factor in quality of life and the value of pursuing one's gifts. At the same time, however, it must be noted that what I saw as a skillful balancing act at the time was actually quite out of balance. Because I had set work as the priority, everything else suffered. The only social life I had was at the theater and my days at home were quite lonely. I was putting my body under tremendous stress and pushed it well beyond its limits because "the show must go on." I was so attached to the goal that I had very little outside of it.
The question I have now is not whether this was a right or wrong way to approach a career. What I wonder now is where that motivation, the drive to seek normal, was really coming from. Was it coming from a genuine passion for the work, a passion so strong that it deserved to be the orchestrating factor in my life? Was it coming from a place of ego, a need to prove that I was a working actor? Perhaps it was old fashioned denial? In a world where there are no role models for success without achievement, I wonder, could it have simply been that I didn't know any other way to be?
Quitting It:
There comes a time in the lives of many chronically ill people when they have tried every angle and they still can't make their career work. The "balance" I spoke of above no longer gets them through the day and they begin to face consequences of missed work, increased illness and narrowing strategic options. This is often one of the most devastating times in a person's life. The loss of self, independence and purpose can be staggering. The perceived ending of dreams and what seems like years of wasted hard work can make a person feel angry or completely lost. For many of us, we do not go softly into this goodnight and there are many attempts to go back to work before we finally settle into a life without the ever-important career. What we see laying before us is a void too deep to initially comprehend.
For me, saying goodbye to working was the first time I came face to face with my powerlessness over my own illness. Up until then I could still manipulate it, wrangle it like a wild bull, when I needed to. The day I stopped working was the day I felt the bull had won and I was gutted. I was vulnerable to every fear and every dormant thought of my own inadequacy. I had been able to be someone, to have labels, and now I was left with being "The girl who sits on the couch and watched Oprah"? What was my point of existing? Why was I here? And more importantly, would anyone see my life as meaningful? My ego was in a state of complete panic and I had no idea how to live in a world without striving for "success."
What was amazing was that after the sadness and the insecurities passed, I found that it was actually very easy to fill my days. I had projects and routines but also found great pleasure in the flow of freedom. I connected with myself in a deeper way than I ever had and came to love who I was, not what I could accomplish. Over time, I began to wonder how people could live lives so consumed with work! How did they have time for themselves? It was during this time that I began to redefine the meaning of success for myself. Who is more successful, the unhappy movie star or the perfectly joyful Girl on the Couch Watching Oprah? I was beginning to embrace the idea that it may just be the latter.
So, this brings me back around to laying on the couch, under a pile of blankets and letting go of Oprah. Somewhere along the way, after the second transplant, I had clearly slipped back into the old mindset of success. Big conferences, more books, a name for myself: is this what it was really all about? If it was, I was beginning to see it was completely unsustainable for me. I couldn't handle the internal or external pressure. I was fading out of joy right into the need for others to me I was performing as expected. My dreams had become goals and those goals had become burdens. It was time to reframe. It was time to stop being attached to Oprah and discover the way to true fulfillment in my life's work.
It didn't take long before I had the opportunity to practice a new way of carrying this out. I was teaching a patient/family workshop of about 50 people and we were on a lunch break. I scarfed down my food so that I could have enough time to prepare for the next segment. I was in my usual speaker's "chicken with head cut off" mode and searching out a second microphone. In my mind, I needed that microphone and the post-lunch workshop's success depended on it.
As I made my way through the tables of people, participants kept popping up out of their chairs to talk with me. They had questions or stories they wanted to share and that takes time. Time I felt I needed to get that second microphone set up. When I spoke with the first few people, I was polite and to the point. I restrained myself as much as possible from looking over their shoulder, anticipating my next move on the hunt. When the third person stood in my path, I had only made it a few feet into the room and the clock in my head was ticking louder. I was getting frustrated.
As this man spoke to me, I started out seeing him as an obstacle to a very specific goal: the microphone. At some point during our conversation, however, I thought of myself shivering on the coach and letting go of Oprah. This was it, my moment to reframe. I took a breath and stopped glancing over his shoulder. I calmed myself and took a more planted posture. I made myself listen, not humor him, but really listen. In that conversation, I found the joy for my work and the fulfillment I was lacking previously. We connected, shared and were present together. He told me things I was honored to know and responded genuinely. I was not a speaker looking for a microphone, I was a person lucky enough to have a perfect stranger feel compelled to tell me his truth. I was transformed there, in that moment, and never wanted to be a speaker looking for a microphone again.
I never made it across the room that day. With every step, another person stood before me and we connected about whatever had brought us there that day. When the second segment began I did not have the microphone I needed. And no one, including me, cared. This is the work I want to do and the way I want to do it. The beauty is, I don't need to be running a workshop to make this happen. With each person, each day, I can choose to look over their shoulder for that microphone or I can be honestly present. With my life, I can choose to cling to attachments, shadows of goals I set in the past, or I can live it as it best served right now. Is success in this moment taking a nap instead of writing a new chapter? Then so be it. Is canceling a work meeting for lunch with a friend the more healthy choice today? Then it is the successful choice.
Illness teaches us so much. If nothing else, it has taught me that now is all we have. I will never pretend to not have ambitions or desires but those must be monitored so that they do not become burdens. I must define success for myself and not let this society tell me how valuable or not valuable I am. On the day I am laying on the couch with a fever and it is the beginning of the end, what will I remember? The disappointment and angst I felt about not being on national television or the conversation I had in the workshop where I never got a second microphone? I think we all know the answer to that.
So, today, I say goodbye to Oprah. I have let you go and I am free to be successful right now.
I had a strong suspicion that what I was feeling was a result of acute rejection. Unlike chronic rejection, the illness that made it necessary for me to have a second transplant, acute is usually treatable with heavy doses of steroids. Intellectually, I understood that there was little reason for grave concern. Despite this, I did not resist the impulse to allow my thoughts to travel into the realm of worst case scenario. What if this was something serious? What if I was facing my third terminal illness? What if this was the first day of the ending of my life? What if all of my healthiest moments were behind me?
To some, this might seem like a ridiculous and morbid road to travel. After all, I am normally quite a positive person who holds true to the motto: "Be optimistic now, you can always cry later." But for me, for where I have been in my emotional and spiritual journey, pondering the end does not feel morbid or ridiculous at all. Walking beside the presence of death has become second nature to me and thinking about it in such concrete terms is only one mental step forward in consciousness from where I operate normally.
So, under my pile of blankets, I took that step into "what if" and was slightly surprised by my own reaction. The more I thought about shedding this "mortal coil" the more my body relaxed. I was practically melting into the fibers of the couch cushions. Stress was draining out of me and I was feeling a sense of relief I did not even know I needed. All of the obligations, the pressures and the striving for goals were transforming in the fantasy of my life coming to a close. Most of what mattered moments before no longer seemed to be of such value. I was becoming free again.
We all have stories and beliefs we function by. Some of these we may be aware of and others we may not. Certainly, after my experiences, there are many reasons for the work I do and how I do it. Stories play in my mind and tell me that "I must do all I can, while I can" and that I "have a mission." These are inspiring and humbling thoughts that drive my every day attitude and work ethic. What I learned on the couch that day, as stress evaporated along with my fever, is the interpretation of these internal stories needed some serious attention.
For the sake of argument, let's say that I am correct in believing that I have a mission and should do as much as I can regarding that mission while I am here on earth. Let's also say that there is nothing wrong with this as a basic core belief. But how then am I defining the mission and what does it mean to "do all I can"? This is where my feet may have fallen off of the path and ego took over. I shaped the definitions to these things early on in my career and they were all based on external confirmation of my worth. There was a staircase of ways to the top, and the top was Oprah. When I reached her, I would have fulfilled my destiny!
It sounds silly to say out loud now, but I developed a strong attachment to the goal of being on Oprah. As time ticked by, I was becoming more and more impatient and disappointed that Oprah was still nowhere in reach for me. Oprah was in my mind when I wrote, spoke and made plans for my career. At the time, I had no idea that Oprah was tormenting me.
It wasn't until I felt the weight of the Oprah Goal lift from my neck and shoulders that I understood that, what was once an innocent dream, had become a burden too heavy to carry. By being attached to such a specific and lofty goal, I had stopped concentrating on the mission and mostly focused on the outcome. In doing this, I was not only causing myself undue stress but I was missing out on the brilliance of my own life as it was without Oprah.
As a sick person, I am surrounded by the meters of success our culture provides. As a sick person, I have often felt I did not measure up to many of these. To have a college degree, to own a home, to travel the world, to have a full time job--these are the archetypal images I have of what it means to be a grown up. Oprah was going to be my fast track to getting full grown up status. Once again, however, I am now grateful for the wisdom of illness as I look back on the lessons I have learned from a lifetime of being sick and attempting to find worth in an occupation.
Faking It
When I was 16, one of my first jobs was in a sandwich shop. I prepared the sandwiches in front of the customers and one day I had a coughing fit while doing so. My cough sounded horrible even though I was not really contagious and, not surprisingly, the customer refused the sandwich. After a brief confrontation, he left the cafe. I was embarrassed, hurt and confused. My boss was unbelievably kind about the whole thing and encouraged me to not let that one person make me feel bad about myself. What a wonderful man! But I was also not stupid, as much as I tried, I could never stifle the cough when customers were around. Food prep was probably not a good place for me to be.
My next job was in a book store which seemed like a much safer environment. One day I was not feeling well and I was checking people out at the register. I must have had a surly look on my face because the customer told me I "try should smiling sometime." I was taken aback and was not aware that I looked so unpleasant that I deserved this public facial reprimand. Sometimes, when we are very sick, it is all we can do to speak, stand and shuffle the papers around. I simply didn't have it in me to smile too.
In both of these early work experiences, I learned the expectations of those around me were that I should appear and act "normal." Being that I wasn't normal, this caused me stress and I sought elaborate coping mechanisms to fake it. Each job search came with its own questions of places to escape if I needed to cough, public interaction and flexibility of sick time. The pressure I felt to be normal also started me down the path of major overcompensation, meaning I would have rather crawled to work than call in sick.
Balancing It
As time went on, cystic fibrosis became a bigger and bigger part of my existence and the line between life and work grew thinner and thinner. With the strong drive to continue faking it and to appear "normal" (aka employed) sacrifices had to be made somewhere. As my body grew weaker, these sacrifices became more dramatic. It came to a point, when I was trying to live the dream of being and actor and a director, that my days revolved around the next rehearsal or performance.
Each day, I would sleep as much as I could in order to have enough energy for the theater. I did treatments religiously, not so much for myself, but to stay in the game. During a show's run, I would hold out on going into the hospital or getting home IV medications. As a result, each show's closing was followed by a trip to the emergency room and a three week hospital stay. This all seemed perfectly worth it to me.
I'm not judging this approach to living and working with illness. Who knows what is best when you factor in quality of life and the value of pursuing one's gifts. At the same time, however, it must be noted that what I saw as a skillful balancing act at the time was actually quite out of balance. Because I had set work as the priority, everything else suffered. The only social life I had was at the theater and my days at home were quite lonely. I was putting my body under tremendous stress and pushed it well beyond its limits because "the show must go on." I was so attached to the goal that I had very little outside of it.
The question I have now is not whether this was a right or wrong way to approach a career. What I wonder now is where that motivation, the drive to seek normal, was really coming from. Was it coming from a genuine passion for the work, a passion so strong that it deserved to be the orchestrating factor in my life? Was it coming from a place of ego, a need to prove that I was a working actor? Perhaps it was old fashioned denial? In a world where there are no role models for success without achievement, I wonder, could it have simply been that I didn't know any other way to be?
Quitting It:
There comes a time in the lives of many chronically ill people when they have tried every angle and they still can't make their career work. The "balance" I spoke of above no longer gets them through the day and they begin to face consequences of missed work, increased illness and narrowing strategic options. This is often one of the most devastating times in a person's life. The loss of self, independence and purpose can be staggering. The perceived ending of dreams and what seems like years of wasted hard work can make a person feel angry or completely lost. For many of us, we do not go softly into this goodnight and there are many attempts to go back to work before we finally settle into a life without the ever-important career. What we see laying before us is a void too deep to initially comprehend.
For me, saying goodbye to working was the first time I came face to face with my powerlessness over my own illness. Up until then I could still manipulate it, wrangle it like a wild bull, when I needed to. The day I stopped working was the day I felt the bull had won and I was gutted. I was vulnerable to every fear and every dormant thought of my own inadequacy. I had been able to be someone, to have labels, and now I was left with being "The girl who sits on the couch and watched Oprah"? What was my point of existing? Why was I here? And more importantly, would anyone see my life as meaningful? My ego was in a state of complete panic and I had no idea how to live in a world without striving for "success."
What was amazing was that after the sadness and the insecurities passed, I found that it was actually very easy to fill my days. I had projects and routines but also found great pleasure in the flow of freedom. I connected with myself in a deeper way than I ever had and came to love who I was, not what I could accomplish. Over time, I began to wonder how people could live lives so consumed with work! How did they have time for themselves? It was during this time that I began to redefine the meaning of success for myself. Who is more successful, the unhappy movie star or the perfectly joyful Girl on the Couch Watching Oprah? I was beginning to embrace the idea that it may just be the latter.
So, this brings me back around to laying on the couch, under a pile of blankets and letting go of Oprah. Somewhere along the way, after the second transplant, I had clearly slipped back into the old mindset of success. Big conferences, more books, a name for myself: is this what it was really all about? If it was, I was beginning to see it was completely unsustainable for me. I couldn't handle the internal or external pressure. I was fading out of joy right into the need for others to me I was performing as expected. My dreams had become goals and those goals had become burdens. It was time to reframe. It was time to stop being attached to Oprah and discover the way to true fulfillment in my life's work.
It didn't take long before I had the opportunity to practice a new way of carrying this out. I was teaching a patient/family workshop of about 50 people and we were on a lunch break. I scarfed down my food so that I could have enough time to prepare for the next segment. I was in my usual speaker's "chicken with head cut off" mode and searching out a second microphone. In my mind, I needed that microphone and the post-lunch workshop's success depended on it.
As I made my way through the tables of people, participants kept popping up out of their chairs to talk with me. They had questions or stories they wanted to share and that takes time. Time I felt I needed to get that second microphone set up. When I spoke with the first few people, I was polite and to the point. I restrained myself as much as possible from looking over their shoulder, anticipating my next move on the hunt. When the third person stood in my path, I had only made it a few feet into the room and the clock in my head was ticking louder. I was getting frustrated.
As this man spoke to me, I started out seeing him as an obstacle to a very specific goal: the microphone. At some point during our conversation, however, I thought of myself shivering on the coach and letting go of Oprah. This was it, my moment to reframe. I took a breath and stopped glancing over his shoulder. I calmed myself and took a more planted posture. I made myself listen, not humor him, but really listen. In that conversation, I found the joy for my work and the fulfillment I was lacking previously. We connected, shared and were present together. He told me things I was honored to know and responded genuinely. I was not a speaker looking for a microphone, I was a person lucky enough to have a perfect stranger feel compelled to tell me his truth. I was transformed there, in that moment, and never wanted to be a speaker looking for a microphone again.
I never made it across the room that day. With every step, another person stood before me and we connected about whatever had brought us there that day. When the second segment began I did not have the microphone I needed. And no one, including me, cared. This is the work I want to do and the way I want to do it. The beauty is, I don't need to be running a workshop to make this happen. With each person, each day, I can choose to look over their shoulder for that microphone or I can be honestly present. With my life, I can choose to cling to attachments, shadows of goals I set in the past, or I can live it as it best served right now. Is success in this moment taking a nap instead of writing a new chapter? Then so be it. Is canceling a work meeting for lunch with a friend the more healthy choice today? Then it is the successful choice.
Illness teaches us so much. If nothing else, it has taught me that now is all we have. I will never pretend to not have ambitions or desires but those must be monitored so that they do not become burdens. I must define success for myself and not let this society tell me how valuable or not valuable I am. On the day I am laying on the couch with a fever and it is the beginning of the end, what will I remember? The disappointment and angst I felt about not being on national television or the conversation I had in the workshop where I never got a second microphone? I think we all know the answer to that.
So, today, I say goodbye to Oprah. I have let you go and I am free to be successful right now.
Wednesday, March 4, 2009
The Physician's Paradox
Generally speaking, those who seek to practice medicine have an inclination towards science and problem solving. This certainly can be true of nurses, social workers and other professional caregivers, but I'm mostly directing this characterization at those who choose to be doctors. There is usually a belief in tests, research and data. There is a satisfaction in fixing a physical problem with a tangible and concrete solution. Facts are valued over anecdotal evidence. Chemicals and surgery are considered before the mind or emotions. The people who practice medicine want to help people with what can be seen as the undeniable results of science.
Often, this science serves us. Often, the belief in data and chemicals is proven true by a predictable outcome. Often, medicine works as expected.
But what about the days when science fails us? When the treatment we thought would be so simple goes terribly awry? Or, what about the patient who regains health after all hope of medical intervention was lost? If something does not work 100% of the time as we predict, how can we believe it to be true science? What becomes of the doctors who rely on science for their view of the world and those they treat?
I have known many doctors in my life. Each to their own degree, they allow the combination of science and mystery to instruct their practice.
I have known doctors who treat me as a grouping of cells and disease processes. These are the doctors who I find to be arrogant and blind to my basic human-ness. These are the caregivers who will leave me when my illness is untreatable or confusing. These are the same ones who think they have all the control and can not bear to give any of it to anyone, especially a patient.
It is my experience that the best physicians are the ones who are never so bold to believe they are up to the task of being a doctor. They walk the tightrope of uncertainty and scientific structure without clinging too strongly to one or the other. They remain confident in science while taking a deep breath through all that they do not know. This, the physician's paradox, is what makes the doctors I have loved extraordinary caregivers.
Often, this science serves us. Often, the belief in data and chemicals is proven true by a predictable outcome. Often, medicine works as expected.
But what about the days when science fails us? When the treatment we thought would be so simple goes terribly awry? Or, what about the patient who regains health after all hope of medical intervention was lost? If something does not work 100% of the time as we predict, how can we believe it to be true science? What becomes of the doctors who rely on science for their view of the world and those they treat?
I have known many doctors in my life. Each to their own degree, they allow the combination of science and mystery to instruct their practice.
I have known doctors who treat me as a grouping of cells and disease processes. These are the doctors who I find to be arrogant and blind to my basic human-ness. These are the caregivers who will leave me when my illness is untreatable or confusing. These are the same ones who think they have all the control and can not bear to give any of it to anyone, especially a patient.
It is my experience that the best physicians are the ones who are never so bold to believe they are up to the task of being a doctor. They walk the tightrope of uncertainty and scientific structure without clinging too strongly to one or the other. They remain confident in science while taking a deep breath through all that they do not know. This, the physician's paradox, is what makes the doctors I have loved extraordinary caregivers.
Monday, March 2, 2009
Back in the Sick World
I have been a bad blogger. I have missed blogging, though, and have lists of topics I am excited to explore. Like with my first book, I have set my deadline for the second book's rough draft to be done by my birthday, July 17th. That means I have to get cracking here! Keep an eye out for more posts and hopefully more frequent posts.But, I took a break over the past few weeks for health reasons. I have been feeling fatigued for a month or so and have gone to see the docs about it. We all assumed it was usual winter blahs and, since my lung functions looked great, we left it at that. At some point a few weeks ago, I started having low grade fevers and it clicked--I had a strong feeling this was acute rejection. This is different from chronic rejection, so please don't get confused.
Chronic is what caused me to have a second transplant and can be very serious. Acute rejection has the possibility of being serious but, more often than not, it can be treated with high doses of steroids with no real lasting ramifications. So, when it clicked that I had felt this way before, I asked for a bronch to see if I was right.
Long story short, I was. I had acute rejection and it was treated last week with high doses of IV steroids and now I am on high doses of oral steroids. It isn't fun being on these crazy drugs but I knew what I was getting myself into and was prepared for the emotional roller coaster. All in all, it hasn't been too bad physically.
Emotionally, it was just what the universe ordered. I hope this isn't too strange to say, but I needed to get in touch with the sick world and take stock of my priorities, goals and perspectives. When I am looking down the barrel of illness, there is no more powerful way for me to get my values in order.
I am so grateful for the fear I felt as I wondered if this was the beginning of another end.
I am so grateful for the time spent with IVs and procedures, it reminded me the beauty of being free and, at the same time, the value I have even as a person wearing a hospital gown.
I am so grateful for all of the love and support from my healthcare team, friends, family and strangers. I am a lucky, lucky patient.
My time back in the trenches of the sick world, as short as it may have been, reminded me of the lessons of illness that are sometimes easy to gloss over in times of health. I got a lot of things sorted out in my head and I can't wait to share them with you!
For now, however, I must just leave you with the pic of me before my bronch and a promise of more later, and soon.
I'm off for dinner with a good friend and ain't that what life is all about?
Love to you all!
Sunday, February 15, 2009
Patient Portraits
One of the great freedoms that comes with age is the understanding that I am different than you. Just because I respond to a situation in one way does not mean you will have the same reaction. We are all bound by the commonality that is our humanness but, at the same time, I often find myself in a state of awe at just how unpredictable and mysterious my fellow man/woman really is.
Whether it is a religious belief, a work ethic or the technique used to squeeze the toothpaste tube, we live in a world with endless choices and opinions. When we hold a narrow view which includes only that we which believe to be true, we find ourselves in a place of judgment, frustration and conflict. When we expand our view to allow ours to co-exist with those around us, we find ourselves in a place of fascination, expansion and compassion. It took me a long time to understand that when I welcome your foreign perspective, it does not then cancel my own. I can both live by my truth and respect yours.
While this applies to life as a whole, it also specifically applies to life as a patient. There is an unspoken criterion for what makes a "good patient" and those outside that criteria may find themselves being judged for not measuring up. A good patient is compliant, happy, agreeable, motivated, respectful and grateful. On several occasions, I have been asked by both healthcare professionals and family members how to make a patient fit these criteria. They wanted tips on how to inspire or shame a person out of anger, fear or self-pity. While I agree that those states are not optimal for recovery, they are a part of healing from the inside out. You can not feel gratitude until you have allowed yourself to feel self-pity. There are no shortcuts.
In addition, there are many ways to be a patient. The "good patient" shoe will not fit on every foot. To see all patients as capable of behaving this way is to see those who don't as failures or, a more popular term, as victims. I won't lie and say I don't get frustrated when I see patients who are locked in their own prison, victimized by their illness. It seems like it shouldn't have to be that way but who am I to say what your experience should be? Likewise, who is my nurse or my doctor to tell me how I should or should not be reacting to anything?
Truth be told, healthcare moves at the speed of light and few professionals have the time to uncover the motives, feelings or needs of anyone acting like a "victim." These patients slow down the process, make the job of caregiving harder, and therefore these are the people who are judged, written off or just misunderstood. Perhaps if we all stop seeing healthcare through our own eyes, we can take a moment to look at the different ways people react to and move through illness. Perhaps by doing this we can have more patience, more compassion and have more to offer.
Patients come in all shapes and sizes, ethnic and socio-economic backgrounds and pre-existing personalities. Just for fun, I have drawn some patient portraits with my words to match my observations over the years. It is my hope that this will generate some thought on just how different we all are and how we can be treated accordingly. Despite wearing the same paper gowns, we all react to the crisis of illness in our own, unique way.
Because at the bottom of any illness scenario is the feeling of being out of control, I have focused on how different individuals seek comfort within the unpredictable world of illness.
The Compliance King or Queen
Finding Comfort: This patient finds comfort in doing everything they can to have control over the illness.
Becoming Empowered: This patient feels most empowered when they have a skill set, rules to follow or schedules to maintain that, when implemented, will result in better health.
The Draw Back: This is an ideal patient, medically, but runs the risk of becoming neurotic about missing a dose of medicine etc.
Caring for The Compliance King or Queen: This patient will have a hard time when there is nothing else that can be done medically and may be better served having tasks and goals to give the illusion of control no matter what.
The Sensitive Patient
Finding Comfort: For the Sensitive Patient, life revolves around relationships and the relationship between themselves, their loved ones and the healthcare professionals is paramount in their care. More than anything, the Sensitive Patient finds comfort in having family and friends close by to encourage maximum healing.
Becoming Empowered: Empowerment for The Sensitive Patient may come from those around them affirming the need to have the patient get well and be in their life. Sometimes, The Sensitive Patient finds it easier to be motivated by others' needs than their own desires.
The Draw Back: These patients have a hard time being taken care of because they are most comfortable being the in the caregiving role themselves.
Caring for The Sensitive Patient: This patient has a tender heart and will be troubled seeing the pain and worry in the eyes of those they love. It is important for those caring for them to remind them often that the caregivers are getting something out of it, like a sense of closeness or service.
The Potentially Proactive Patient
Finding Comfort: This patient finds comfort in external validation. This can be difficult to come by in a healthcare setting. This patient will find the most comfort when they discover their own power, perhaps as an advocate for themselves or a mentor for other patients.
Becoming Empowered: For this patient, the feeling of worthlessness can be devastating. It is essential to guide this patient to finding a way to be empowered within this role of patient.
The Draw Back: This patient can become angry and non-compliant if they feel they are not being treated as a competent person. They hold the potential to rebel to prove a point, which can be detrimental to their health and healing.
Caring for The Potentially Proactive Patient: Healthcare professionals will find treating this patient as a peer will inspire a greater sense of responsibility and therefore a greater motivation to be proactive in their own care. Most important, this patient must find ways to feel valuable within their illness circumstances.
The Alternative Patient
Finding Comfort: This patient finds comfort in going outside of the norms and looking for their own solutions to healthcare problems. This may include seeking supplemental alternative therapy, a spiritual approach to healing or creating their own healthcare game plan.
Becoming Empowered: This patient feels most empowered when they are not conforming to the traditional health plan but instead, finding new and progressive alternatives.
The Draw Back: These patients run the risk of going so far outside the norm that they miss out on the benefits of common medical practices.
Caring for The Alternative Patient: As a caregivers, it is best to encourage a integrative healthcare approach which will allow for maximum treatment options while satisfying this patient's needs for new ideas.
The Analytical Patient
Finding Comfort: This patient finds comfort in the pursuit and mastery of pertinent medical knowledge.
Becoming Empowered: This patient will be the one who earns an honorary medical degree through exhaustive research on whatever health issue they are facing. This patient finds empowerment through satiating their desire to posses as much knowledge as those treating them.
The Draw Back: This patient holds the potential to be blinded by their own studies and not rely on the real life experience of those treating them.
Caring for The Analytical Patient: The Analytical Patient may question diagnoses, make their own treatment recommendations or seek new healthcare professionals practicing with the most state of the art philosophies and techniques. This patient is best served when regarded as a consultant in their own care; they will respond best when their research and analysis are carefully considered by the healthcare team.
The Wide-Eyed Patient
Finding Comfort: The Wide-Eyed Patient finds comfort in observing, asking about and participating in the healthcare activities around them. Unlike the Analytical Patient, this is not an academic endeavor but rather one in which they find joy in new experiences, even in the midst of illness.
Becoming Empowered: This patient may ask to watch the screen during a bronchoscopy or to push their own IV medications through the line. It is through this exploration of the world around them that they feel most empowered.
The Draw Back: This patient has fears and worries just like all other patients but may mask that with their curiosity in the world around them.
Caring for The Wide-eyed Patient: It is important to indulge this patient's curiosity as much as possible but to not let it completely hide the need for emotional support when the "fun" is over.
The Bossy Patient
Finding Comfort: This patient is easy to spot. They find comfort in controlling their environment and the people in it.
Becoming Empowered: This patient often sees themselves as an authority on many things and might make strong assertions based on little factual evidence. They require being informed in detail about the options and issues at hand. The Bossy Patient feels most empowered when, after gathering enough information, they feel they are "calling the shots."
The Draw Back: This patient can become consumed with their own anxieties to the point that they do not notice the discomfort they are causing family, friends or professionals with their demands.
Caring for The Bossy Patient: The Bossy Patient is often loud and holds the potential for emotional outbursts. It is best when treating The Bossy Patient to keep them as calm as possible, reassure them that their opinion matters and try not to take any outbursts personally.
The Passive Patient
Finding Comfort: This patient finds comfort in trusting the authority, in handing their fate to those doctors and nurses who know more and have the skills and experience it takes to handle a healthcare problem.
Becoming Empowered: This patient feels most empowered when they have someone close to them who can coach them and support them through the healthcare experience. They are capable of being their own advocate but need validation and encouragement to act on their own behalf.
The Draw Back: While the trust The Passive Patient holds for professionals makes this patient easy to work with, there is a price to pay for violating this trust. Once a professional has behaved in a hurtful way or made a medical error, this patient has the potential to explode or, at the very least, stew silently while planning their escape from your care.
Caring for The Passive Patient: This patient will appear to have few opinions and will usually be quite pleasant. The Passive Patient rarely questions professionals and will often remain quiet even in the face of emotionally insensitive staff. Do not be fooled by this exterior, however, because this patient is watching and evaluating everything. It is in the privacy of friends and family that The Passive Patient will reveal the pain, anger and trauma they experienced in silence.
So, what do you think? Do you see yourself in any of these portraits? Have I painted a realistic characterization of you or some of the patients you know? What patient portraits have you observed? Do you think that if we embraced the idea of everyone coping differently, we would have a more compassionate healthcare environment?
Thursday, February 12, 2009
When Things Get to be Too Much...
I suppose it could come from the fact that I have lived my life feeling the need to "prove" to people that I am valuable. Valuable even though I have no college degree. Valuable even though I will never have children. Valuable even though I think about and talk about the things that most people want to avoid. Valuable even though my body is sometimes fragile, often quick to tire. Valuable even though I am not "normal."
Maybe that's part of why I work so hard. Maybe that helps inspire me to find the opportunities for growth and discovery within difficult or unusual circumstances. I feel most valuable when I help people, when they see themselves in me and find a new, undiscovered strength. I feel most valuable when I am "making a difference."
What's wrong with that? Nothing except that my work is not sustainable 100% of the time. No matter how healthy my body is today, no matter how smoothly work is going, no matter how much I am surrounded by those I love, I still have days where I am not who people want me to be. I have days in which I am sad, tired, discouraged or lonely. But this is not the side of me people find helpful so this is the side of me that does not feel valuable.
Yesterday was one of those days. At times I feel a weight on my shoulders; the unanswered emails, the lack of blog posts, the book chapters not written and the marketing that has gone cold. It is days like this when the work outweighs the joy and I feel too small for the tasks at hand. I feel like my fatigue is a sign of weakness on a road in which I have not gone far enough. I feel like I am not enough.
So, what does one do on a day like this? Push harder? Lay down? Cry? Reach out?
I experiemented with all of those things. Pushing harder made me feel as though my heart would explode, this body and mind were already at maximum capacity. So, I stopped pushing and tried trusting. Trusting that one day without work, a week without blogging, a month without marketing, would have to be ok. I trusted that the work I have done already will carry me through the times when I have less to give. I trusted that if this is truly what I am meant to do, it won't all come crashing down. I had to trust that taking care of me would be of the greatest benefit in the long run.
So, I laid down. I cried and I could feel the stress melting out of my back. I reached out to friends and family for support and held on to the knowing that they would love me even if I quit working today and never wrote another sentence or gave another talk. And then, I remembered all of the times in the sick world when I had to stop pushing and give in to the truth of my body and the fatigue of my mind. I remembered the warmth that came after accepting that today was not going to go as planned.
I remembered learning from my CF days that there is nothing that can not be rescheduled. So I made it a Cancellation Day and canceled all of the meetings on my calender. They could wait until I felt better and would be more productive then anyway. I canceled and canceled and canceled and guess what? The world did not stop spinning, the sun kept on shining and no one seemed to notice. How ego wants me to believe that taking a break will ruin everything for everyone! But, time after time, I see there is nothing that can not be rescheduled.
After I cleared my schedule, I lit a candle and had an afternoon of Sacred Television. To appease the critical voices in my head about "not doing enough" I have learned to make rest as much of a ritual as meditation, work or socialization. So, when the candle is lit, and the television is on, this is sacred time for my brain and body to rest.
Today, I am still tired but I do not feel lonely or discouraged anymore. Healing is my responsibility and it does not only apply to times of obvious physical illness. Healing is also needed in times of fatigue, stress and self-doubt. Today, I will continue to nurture myself with rest and compassion. I will give myself permission to write, market and push myself another day.
Oh, but wait. I just wrote something, didn't I? Progress!
Oh, Mr. Balance, how you puzzle me!
Maybe that's part of why I work so hard. Maybe that helps inspire me to find the opportunities for growth and discovery within difficult or unusual circumstances. I feel most valuable when I help people, when they see themselves in me and find a new, undiscovered strength. I feel most valuable when I am "making a difference."
What's wrong with that? Nothing except that my work is not sustainable 100% of the time. No matter how healthy my body is today, no matter how smoothly work is going, no matter how much I am surrounded by those I love, I still have days where I am not who people want me to be. I have days in which I am sad, tired, discouraged or lonely. But this is not the side of me people find helpful so this is the side of me that does not feel valuable.
Yesterday was one of those days. At times I feel a weight on my shoulders; the unanswered emails, the lack of blog posts, the book chapters not written and the marketing that has gone cold. It is days like this when the work outweighs the joy and I feel too small for the tasks at hand. I feel like my fatigue is a sign of weakness on a road in which I have not gone far enough. I feel like I am not enough.
So, what does one do on a day like this? Push harder? Lay down? Cry? Reach out?
I experiemented with all of those things. Pushing harder made me feel as though my heart would explode, this body and mind were already at maximum capacity. So, I stopped pushing and tried trusting. Trusting that one day without work, a week without blogging, a month without marketing, would have to be ok. I trusted that the work I have done already will carry me through the times when I have less to give. I trusted that if this is truly what I am meant to do, it won't all come crashing down. I had to trust that taking care of me would be of the greatest benefit in the long run.
So, I laid down. I cried and I could feel the stress melting out of my back. I reached out to friends and family for support and held on to the knowing that they would love me even if I quit working today and never wrote another sentence or gave another talk. And then, I remembered all of the times in the sick world when I had to stop pushing and give in to the truth of my body and the fatigue of my mind. I remembered the warmth that came after accepting that today was not going to go as planned.
I remembered learning from my CF days that there is nothing that can not be rescheduled. So I made it a Cancellation Day and canceled all of the meetings on my calender. They could wait until I felt better and would be more productive then anyway. I canceled and canceled and canceled and guess what? The world did not stop spinning, the sun kept on shining and no one seemed to notice. How ego wants me to believe that taking a break will ruin everything for everyone! But, time after time, I see there is nothing that can not be rescheduled.
After I cleared my schedule, I lit a candle and had an afternoon of Sacred Television. To appease the critical voices in my head about "not doing enough" I have learned to make rest as much of a ritual as meditation, work or socialization. So, when the candle is lit, and the television is on, this is sacred time for my brain and body to rest.
Today, I am still tired but I do not feel lonely or discouraged anymore. Healing is my responsibility and it does not only apply to times of obvious physical illness. Healing is also needed in times of fatigue, stress and self-doubt. Today, I will continue to nurture myself with rest and compassion. I will give myself permission to write, market and push myself another day.
Oh, but wait. I just wrote something, didn't I? Progress!
Oh, Mr. Balance, how you puzzle me!
Thursday, February 5, 2009
Finding Your Voice has a new Face
I just have to say how excited I am that this year's grant has allowed us to hire Zach Ward of DSI Comedy Theater to create a new marketing campaign for the "Finding Your Voice" series. This year's Finding Your Voice workshops are already booking up and things are going so well. If you're on facebook, please consider joining the "Finding Your Voice" fan page! We need and love fans!!!Here is one of the graphics he designed for us....ain't it purty?
Friday, January 30, 2009
Paint Your Life, There's No Need to be Breathless
I have often thought of the phrase "Life is not a sprint, it's a marathon." I excused myself from that cliche, my life feels very much like a sprint. I feel pressure to get things done, meaningful things, before I die. I have been running at full speed since my second transplant, my eye firmly focused on winning this race before the clock runs out.
Today I was meditating and I began asking myself what this "winning" the sprint would look like? Is there money involved? Does it depend on fame? Prestige? Amount of books written, talks given? When I reach the finish line, how will I know I've won?
I'm sure you're smart enough to know the answer to this riddle: I won't. Because there is no winning and my life isn't a sprint. My journey isn't a straight line of asphalt and no matter how fast or slow I'm traveling, it's a winding road forever changing in texture and scenery.
Today my meditation showed me another metaphor, a better way of seeing my life. Instead of a race, I saw myself putting paint to canvas. Creating a life with different colors, brushes and techniques. Sometimes, the shapes on the canvas look beautiful and other times the colors blend together to make an unattractive hue. But it is no matter. Pretty or ugly, fluid or stilted, what matters about this canvas is that I have no idea what I will paint on it next. What matters about this painting is that it has no beginning or end. It has no deadlines so there is no reason to rush the creation. All that matters is that I continue to paint, continue to choose new and intimidating colors and always remember that this painting will never face a judgmental eye. This painting, even in progress, is already perfect.
Just in the moment I shifted this metaphor of my life, my breathing became easier. I am no longer running a sprint, hoping to win some arbitrary prize for "fulfilling my destiny." My destiny is already here and it exists with every stroke of the paint brush. There is no need for running unless it is out of joy for living.
Today I was meditating and I began asking myself what this "winning" the sprint would look like? Is there money involved? Does it depend on fame? Prestige? Amount of books written, talks given? When I reach the finish line, how will I know I've won?
I'm sure you're smart enough to know the answer to this riddle: I won't. Because there is no winning and my life isn't a sprint. My journey isn't a straight line of asphalt and no matter how fast or slow I'm traveling, it's a winding road forever changing in texture and scenery.
Today my meditation showed me another metaphor, a better way of seeing my life. Instead of a race, I saw myself putting paint to canvas. Creating a life with different colors, brushes and techniques. Sometimes, the shapes on the canvas look beautiful and other times the colors blend together to make an unattractive hue. But it is no matter. Pretty or ugly, fluid or stilted, what matters about this canvas is that I have no idea what I will paint on it next. What matters about this painting is that it has no beginning or end. It has no deadlines so there is no reason to rush the creation. All that matters is that I continue to paint, continue to choose new and intimidating colors and always remember that this painting will never face a judgmental eye. This painting, even in progress, is already perfect.
Just in the moment I shifted this metaphor of my life, my breathing became easier. I am no longer running a sprint, hoping to win some arbitrary prize for "fulfilling my destiny." My destiny is already here and it exists with every stroke of the paint brush. There is no need for running unless it is out of joy for living.
Tuesday, January 27, 2009
Top 10 Reasons Social Workers Rock!
1. A good social worker will remind you that what is happening on the inside is just as important as what is happening on the outside.
2. A good social worker makes all of the complicated paper work and bureaucracy look completely manageable.
3. A good social worker is 10 steps ahead of the patient and family, ready and waiting to be their support for what lies ahead.
4. A good social worker can get you to open up even when you don’t want to...and when you don’t even know that’s what you’re doing!
5. A good social worker cares about the patient more than the rules.
6. A good social worker makes you feel like you've just made a new friend.
7. A good social worker finds creative solutions to complicated problems.
8. A good social worker becomes your advocate when you are too sick or tired to stand up for yourself.
9. A good social worker does their job for the love of helping people, not for the pay.
10. A good social worker is like a honey bee; dedicated to working with those they serve in the illness “hive” but equally active in gathering sweet resources out in the world to give to those who are in need, when they are in need.
Monday, January 26, 2009
Cold Calls
I love my job...well, most of it anyway. The fun part is the speaking and the writing. Trying to find bookings for speaking, however, is less fun. I have been very lucky in that most of my speaking engagements have come to me, I have done minimal soliciting.
Well, it's a new year and time to take things to the next level. For me that means concentrating more energy on booking large conferences all over the place. I have been looking and looking for loopholes to the cold call but today, I decided it had to be done.
I placed 3 cold calls with 3 hospice conferences. I got voicemails and that suited me just fine! It really wasn't so bad. As long as I made the call about what I believe in and not about me, it was fine. Do I look forward to doing it again? Ummm. Not really.
Dreams really do come true, and they have price tags attached! :)
Well, it's a new year and time to take things to the next level. For me that means concentrating more energy on booking large conferences all over the place. I have been looking and looking for loopholes to the cold call but today, I decided it had to be done.
I placed 3 cold calls with 3 hospice conferences. I got voicemails and that suited me just fine! It really wasn't so bad. As long as I made the call about what I believe in and not about me, it was fine. Do I look forward to doing it again? Ummm. Not really.
Dreams really do come true, and they have price tags attached! :)
Sunday, January 25, 2009
Making Meaning Matter
Last year, I turned 35. In my world, that's a big deal. And a nice solid number too. 35. Man, I love the ring of it.
Last year, I had my 4th/8th post transplant anniversary. In my world, 8 years is nothing to sneeze at, even if I had to go through a second transplant to get there. 8. Nice even number and it's almost the big milestone: 10.
So what did I do to celebrate last year? Not much.
For my birthday I had a grant meeting. Albeit an exciting meeting, but it was a meeting even so. My family had the usual party and it all went by with soft shoed fan fare.
For my transplant anniversary, I wrote a letter to my donor family and made mention of it to close friends and family. Really, not even soft shoed fan fare would apply in this instance.
In thinking about my 36th birthday in July and my 5th/9th year transplant anniversary in March, and, well, I want to express the meaning with some tap shoes this year.
It occurred to me that meaning is something that we often expect to simply exist, to be, a fact. But in truth, often times for things to "have meaning" it requires us to slow down and decide to give it the attention it needs in order to meet its meaning potential.
Logically, you might say a birthday has as much meaning when it is quietly appreciated by the person blowing out the candles as it would if there were a big party accompanying the day. I don't think that is true. When I pass by my birthday on the way to a meeting and blow out candles after dinner, how much time have I really taken to reflect and consider the events that led to that day, that moment? Very little.
But when I have a party to celebrate the joy and fortune of being here on earth one more year, the planning of the party, the presence of good friends and family and the role of "birthday girl" all beg me to think about what this day really means. I have given the birthday the kind of attention it requires to be truly meaningful.
In this fast paced world, do we too often pass by birthdays to go to meetings? Do we really take enough time to allow a meaningful moment, day, anniversary to feed us with the fruit of perspective and appreciation? Not always, no.
Well, this year will be different for me. This year, I plan to be deliberate in Making Meaning Matter. This year, I will give my time on earth the time and appreciation it deserves. This year, I will honor meaning by proving that I can slow down long enough to soak meaning into my pores.
So....Karaoke Party anyone???
:)
Last year, I had my 4th/8th post transplant anniversary. In my world, 8 years is nothing to sneeze at, even if I had to go through a second transplant to get there. 8. Nice even number and it's almost the big milestone: 10.
So what did I do to celebrate last year? Not much.
For my birthday I had a grant meeting. Albeit an exciting meeting, but it was a meeting even so. My family had the usual party and it all went by with soft shoed fan fare.
For my transplant anniversary, I wrote a letter to my donor family and made mention of it to close friends and family. Really, not even soft shoed fan fare would apply in this instance.
In thinking about my 36th birthday in July and my 5th/9th year transplant anniversary in March, and, well, I want to express the meaning with some tap shoes this year.
It occurred to me that meaning is something that we often expect to simply exist, to be, a fact. But in truth, often times for things to "have meaning" it requires us to slow down and decide to give it the attention it needs in order to meet its meaning potential.
Logically, you might say a birthday has as much meaning when it is quietly appreciated by the person blowing out the candles as it would if there were a big party accompanying the day. I don't think that is true. When I pass by my birthday on the way to a meeting and blow out candles after dinner, how much time have I really taken to reflect and consider the events that led to that day, that moment? Very little.
But when I have a party to celebrate the joy and fortune of being here on earth one more year, the planning of the party, the presence of good friends and family and the role of "birthday girl" all beg me to think about what this day really means. I have given the birthday the kind of attention it requires to be truly meaningful.
In this fast paced world, do we too often pass by birthdays to go to meetings? Do we really take enough time to allow a meaningful moment, day, anniversary to feed us with the fruit of perspective and appreciation? Not always, no.
Well, this year will be different for me. This year, I plan to be deliberate in Making Meaning Matter. This year, I will give my time on earth the time and appreciation it deserves. This year, I will honor meaning by proving that I can slow down long enough to soak meaning into my pores.
So....Karaoke Party anyone???
:)
The Cave of Denial: A Place to Hide
Have you ever known someone with a chronic but manageable illness who did not do what was necessary to stay healthy? Maybe they didn't lose the weight the doctors told them to and now they need surgery for knee problems. Maybe they didn't change their diet as they should have so their heart disease has progressed. Maybe they didn't take their meds, do their treatments or follow the recommended physical therapy. I think it's safe to say we've all known someone, who at some time, has not followed through with a medical regimen and paid the price in some way.
How did you feel about it? Were you angry? Annoyed? Dismissive? Sad? I know, for me, when I see someone with a manageable illness and they are choosing not to control it, I get irritated. Sitting high atop my horse I look down my nose and say "Poor me. I have an illness that is mostly out of my control. What I would give to have an illness like YOURS--one which if I chose to be diligent I could be healthy for the rest of my life." It seems like such an easy choice, doesn't it? If I follow this set of guidelines I can be healthy and if I don't, I will be sick. How could someone choose not to lose weight, change their diet, take their meds, doe the treatments or stick with the physical therapy? And when they don't do what they could to stay healthy, do they deserve our sympathy when their health declines?
Yes, at my worst, I have saddled up my high horse and deemed people silly for their laziness or lack of foresight. At my best, seeing someone who has a controllable illness neglect themselves has filled me with frustration and sadness. This week, I discovered I was that "someone."
I was diagnosed with diabetes in 2000, shortly after my second transplant. I was absolutely devastated. I saw diabetes as a miserable life sentence of restrictions and complications. At the time, my devastation was accompanied by extreme fatigue, stomach pain and nausea. I was planning on returning to college and, after the diagnosis, I felt so flattened I called and canceled my enrollment. Diabetes was messing with my life and was not welcome in my illness repertoire.
It wasn't long after that I had a real change of heart. I discovered that I had some pancreatic function left and didn't need insulin right away. Because my diabetes was caused by the prednisone after transplant, it was considered a combination between type 1 and type 2. Maybe this wasn't so bad after all. With some oral meds, I had about a year of eating and behaving normally with little diabetic interference.
Even after the oral meds lost effectiveness and I was put on insulin, things still didn't seem so bad. My doctor was aware of my need to gain/retain weight and his philosophy was that I should eat anything I wanted but "cover myself" with appropriate amounts of insulin. I followed his orders initially but often found myself with low blood sugar--a horrible feeling I wouldn't wish on anyone. For anyone who hasn't experienced it imagine sweating profusely, your heart racing, your body convulsing and your brain slowing to the point it is unable to help you with any concrete suggestions like "get some juice." I have spent minutes in the kitchen staring at the refrigerator unable to gather enough menatl capacity to remember what I was supposed to do next. At some point, I began to have anxiety about taking insulin because I didn't want to have another horrible low blood sugar experience.
I began to notice that my blood sugars seemed to balance themselves out eventually, leading me to self diagnose myself as still having pancreatic function. I began to use insulin less and less. I think, for about a year or more, I actually put it out of my mind that I was a diabetic. I rarely checked my blood sugar and, when I did, if it happened to be high I always had an excuse. I would convince myself about why it was high at that moment but that "really wasn't normal." I went right on neglecting myself.
A few weeks ago, I sat in front of my doctor and told her all of these things; I had pancreatic function, my diabetes didn't need insulin, nor did it need managing. I was there for fatigue but I just knew diabetes couldn't be the cause. I even gave her blood sugar levels from years ago as my "average morning numbers."
It's embarrassing to write all of this now. When I got home from that appointment, I decided to just try "an experiement" and check my blood sugars more often. They were all over the map and very high. Consistently. It "really was normal." I began taking insulin as I had been prescribed so many years ago. Like a magic trick, I had energy again. My stomach began working better and even my mind was more clear. I was a diabetic and I needed to manage it. I had come to the end of my excuses and stories.
If you find yourself on your high horse looking down at me now, shaking your head, I don't blame you. I, of all people, shouldn't be guilty of such neglect. I, "sick girl speaks," who preaches about be proactive, getting real and facing your truth. I, who have had two double lung transplants and values the time I have been given. How could I be so dumb? So naive? So delusional? So irresponsible?
Like many people, I think I found a few hiding places to keep me camouflaged until I was ready to face the enemy. So what are some of the factors that led me, and perhaps lead other people, into the cave of denial?
Overwhelm
After my first transplant, I was dealing with a new and complicated medical regimen. I was in a deep depression caused by the prednisone taper. I was attempting to force myself into picking a career path to determine the course of my life. I had just gotten the greatest gift a person could ever be given and hadn't even begun to process all of what happened.
When diabetes came along, I thought I might crash down like a house of cards. I simply didn't feel like I could handle one more thing. When I started getting some messages that it might not be so bad, I clung to the idea that maybe this was something that didn't need much attention after all. I delighted in every clue that might support this theory and gathered them like a bouquet of roses. Even after the overwhelm of my life diminished, I was so convinced that this bouquet was real, I never even questioned it. I just kept living as a person with a mostly functioning pancreas.
Annoyance
Diabetes is nothing if not annoying. It is constant. Aside form the obvious, checking blood sugars 5-6 times a day and giving insulin, there is the side effects that come when the blood sugars go too high or too low. Neither feels good. Every time you eat you must count the carbs in the meal and adjust the insulin based on that number--this I find intensely tedious. A good diabetic usually feels like they spend most of their day calculating, checking, giving insulin and adjusting when the dose is not right. It's annoying. Do I sound like a whiner? Maybe. Because, again, diabetes is something that can be managed if you stay on top of it. But here's the simple, bottom line. The annoyance of diabetes drove me into the Cave of Denial because I Just Didn't Want It.
Lack of Immediate Impact
We all know that diabetes can have devastating results when it's not managed. Amputation and death are understood to be a likely outcome for an unmanaged diabetic. While I understood that intellectually, for the first 8 years I was a diabetic, I didn't feel the effects very often. If I did, I was unaware that what I was expereincing was from diabetes. Conversely, I did feel profound effects from the insulin--sometimes it made me nausuaus and, when I gave too much, made my blood sugar plumit. On some level, I began to associate managing diabetes with feeling bad and not managing it with feeling good. This made my journey into the Cave of Denial even easier.
It wasn't until I discovered that diabetes was negatively impacting something I loved that I became serious about treating it. That something I loved was my life and my career. I was feeling so tired all of the time that I was no longer feeling enthusiasm for holidays with loved ones, giving my beloved lectures or watching my favorite TV shows. My emotional self was flatlining and it was freaking me out. When I realized diabetes was the culprit, the impact it had on my life became real. It wasn't until diabtes went from abstract to concrete that I wanted to crawl out of the Cave of Denial and get real about being diabetic.
There are people who will follow medical directions to the letter without ever missing one moment of dedication. There are people like me who will be dedicated about some things (like transplant meds) but neglectful about other things. I have had some parents of chronically ill children ask me how I recommend they make their child be compliant. Sadly, I think in some cases it takes experiencing the negative effects of an illness to become motivated to do better in the future. For some of us, the first step is finding something meaningful to live for and using that as a driving force to stay healthy. We are creatures who move towards pleasure and away from pain. Sadly, sometimes the Cave of Denial feels like a pleasurable place to hide; far less painful than the work, annoyance and discomfort of compliance.
I don't mean to suggest that we should all neglect our healthcare treatments until we get into enough trouble to be motivated to compliance. In some cases, that level of neglect could cause so much damage that a change of heart would not be enough to return the person to health.
Ideally, we would all do what is best for us all of the time. I only wish this was the way it worked for everyone! I simply write this as a guilty party, someone who has spent years in the Cave of Denial, so that we all might have more compassion for each other's struggles. I know it is frustrating to watch someone who could be healthier not take full advantage of what is available to them. Perhaps, with a different understanding, healthcare professionals and loved ones will be able to discover new ways to draw patients out of the Cave of Denial. And sometimes, as much as we wish it weren't true, some of us have to learn the hard way how much we want to live.
How did you feel about it? Were you angry? Annoyed? Dismissive? Sad? I know, for me, when I see someone with a manageable illness and they are choosing not to control it, I get irritated. Sitting high atop my horse I look down my nose and say "Poor me. I have an illness that is mostly out of my control. What I would give to have an illness like YOURS--one which if I chose to be diligent I could be healthy for the rest of my life." It seems like such an easy choice, doesn't it? If I follow this set of guidelines I can be healthy and if I don't, I will be sick. How could someone choose not to lose weight, change their diet, take their meds, doe the treatments or stick with the physical therapy? And when they don't do what they could to stay healthy, do they deserve our sympathy when their health declines?
Yes, at my worst, I have saddled up my high horse and deemed people silly for their laziness or lack of foresight. At my best, seeing someone who has a controllable illness neglect themselves has filled me with frustration and sadness. This week, I discovered I was that "someone."
I was diagnosed with diabetes in 2000, shortly after my second transplant. I was absolutely devastated. I saw diabetes as a miserable life sentence of restrictions and complications. At the time, my devastation was accompanied by extreme fatigue, stomach pain and nausea. I was planning on returning to college and, after the diagnosis, I felt so flattened I called and canceled my enrollment. Diabetes was messing with my life and was not welcome in my illness repertoire.
It wasn't long after that I had a real change of heart. I discovered that I had some pancreatic function left and didn't need insulin right away. Because my diabetes was caused by the prednisone after transplant, it was considered a combination between type 1 and type 2. Maybe this wasn't so bad after all. With some oral meds, I had about a year of eating and behaving normally with little diabetic interference.
Even after the oral meds lost effectiveness and I was put on insulin, things still didn't seem so bad. My doctor was aware of my need to gain/retain weight and his philosophy was that I should eat anything I wanted but "cover myself" with appropriate amounts of insulin. I followed his orders initially but often found myself with low blood sugar--a horrible feeling I wouldn't wish on anyone. For anyone who hasn't experienced it imagine sweating profusely, your heart racing, your body convulsing and your brain slowing to the point it is unable to help you with any concrete suggestions like "get some juice." I have spent minutes in the kitchen staring at the refrigerator unable to gather enough menatl capacity to remember what I was supposed to do next. At some point, I began to have anxiety about taking insulin because I didn't want to have another horrible low blood sugar experience.
I began to notice that my blood sugars seemed to balance themselves out eventually, leading me to self diagnose myself as still having pancreatic function. I began to use insulin less and less. I think, for about a year or more, I actually put it out of my mind that I was a diabetic. I rarely checked my blood sugar and, when I did, if it happened to be high I always had an excuse. I would convince myself about why it was high at that moment but that "really wasn't normal." I went right on neglecting myself.
A few weeks ago, I sat in front of my doctor and told her all of these things; I had pancreatic function, my diabetes didn't need insulin, nor did it need managing. I was there for fatigue but I just knew diabetes couldn't be the cause. I even gave her blood sugar levels from years ago as my "average morning numbers."
It's embarrassing to write all of this now. When I got home from that appointment, I decided to just try "an experiement" and check my blood sugars more often. They were all over the map and very high. Consistently. It "really was normal." I began taking insulin as I had been prescribed so many years ago. Like a magic trick, I had energy again. My stomach began working better and even my mind was more clear. I was a diabetic and I needed to manage it. I had come to the end of my excuses and stories.
If you find yourself on your high horse looking down at me now, shaking your head, I don't blame you. I, of all people, shouldn't be guilty of such neglect. I, "sick girl speaks," who preaches about be proactive, getting real and facing your truth. I, who have had two double lung transplants and values the time I have been given. How could I be so dumb? So naive? So delusional? So irresponsible?
Like many people, I think I found a few hiding places to keep me camouflaged until I was ready to face the enemy. So what are some of the factors that led me, and perhaps lead other people, into the cave of denial?
Overwhelm
After my first transplant, I was dealing with a new and complicated medical regimen. I was in a deep depression caused by the prednisone taper. I was attempting to force myself into picking a career path to determine the course of my life. I had just gotten the greatest gift a person could ever be given and hadn't even begun to process all of what happened.
When diabetes came along, I thought I might crash down like a house of cards. I simply didn't feel like I could handle one more thing. When I started getting some messages that it might not be so bad, I clung to the idea that maybe this was something that didn't need much attention after all. I delighted in every clue that might support this theory and gathered them like a bouquet of roses. Even after the overwhelm of my life diminished, I was so convinced that this bouquet was real, I never even questioned it. I just kept living as a person with a mostly functioning pancreas.
Annoyance
Diabetes is nothing if not annoying. It is constant. Aside form the obvious, checking blood sugars 5-6 times a day and giving insulin, there is the side effects that come when the blood sugars go too high or too low. Neither feels good. Every time you eat you must count the carbs in the meal and adjust the insulin based on that number--this I find intensely tedious. A good diabetic usually feels like they spend most of their day calculating, checking, giving insulin and adjusting when the dose is not right. It's annoying. Do I sound like a whiner? Maybe. Because, again, diabetes is something that can be managed if you stay on top of it. But here's the simple, bottom line. The annoyance of diabetes drove me into the Cave of Denial because I Just Didn't Want It.
Lack of Immediate Impact
We all know that diabetes can have devastating results when it's not managed. Amputation and death are understood to be a likely outcome for an unmanaged diabetic. While I understood that intellectually, for the first 8 years I was a diabetic, I didn't feel the effects very often. If I did, I was unaware that what I was expereincing was from diabetes. Conversely, I did feel profound effects from the insulin--sometimes it made me nausuaus and, when I gave too much, made my blood sugar plumit. On some level, I began to associate managing diabetes with feeling bad and not managing it with feeling good. This made my journey into the Cave of Denial even easier.
It wasn't until I discovered that diabetes was negatively impacting something I loved that I became serious about treating it. That something I loved was my life and my career. I was feeling so tired all of the time that I was no longer feeling enthusiasm for holidays with loved ones, giving my beloved lectures or watching my favorite TV shows. My emotional self was flatlining and it was freaking me out. When I realized diabetes was the culprit, the impact it had on my life became real. It wasn't until diabtes went from abstract to concrete that I wanted to crawl out of the Cave of Denial and get real about being diabetic.
There are people who will follow medical directions to the letter without ever missing one moment of dedication. There are people like me who will be dedicated about some things (like transplant meds) but neglectful about other things. I have had some parents of chronically ill children ask me how I recommend they make their child be compliant. Sadly, I think in some cases it takes experiencing the negative effects of an illness to become motivated to do better in the future. For some of us, the first step is finding something meaningful to live for and using that as a driving force to stay healthy. We are creatures who move towards pleasure and away from pain. Sadly, sometimes the Cave of Denial feels like a pleasurable place to hide; far less painful than the work, annoyance and discomfort of compliance.
I don't mean to suggest that we should all neglect our healthcare treatments until we get into enough trouble to be motivated to compliance. In some cases, that level of neglect could cause so much damage that a change of heart would not be enough to return the person to health.
Ideally, we would all do what is best for us all of the time. I only wish this was the way it worked for everyone! I simply write this as a guilty party, someone who has spent years in the Cave of Denial, so that we all might have more compassion for each other's struggles. I know it is frustrating to watch someone who could be healthier not take full advantage of what is available to them. Perhaps, with a different understanding, healthcare professionals and loved ones will be able to discover new ways to draw patients out of the Cave of Denial. And sometimes, as much as we wish it weren't true, some of us have to learn the hard way how much we want to live.
Saturday, January 24, 2009
So behind...
I have a book of blog ideas and since I have recently re-committed to blogging, I get so frustrated when things are too busy for me to write. Paradoxically, I am doing very well with my efforts to balance my life (actually plan on blogging about that) and sometimes, in this effort for balance, blogging has to be pushed to another day.
Tomorrow is Sunday and I hope to have plenty of time to write a blog or two...until then, just a thought that passed through my mind...
When us recipients refer to our donor organs it's not uncommon for us to say "my new lungs" or my "my new heart." Perhaps I'm over thinking things, but I'm wondering if that could in any way be offensive to a donor family.
The organ is certainly not "new" and by saying so it makes it sound like we got in at Nordstom's or something. That language could be seen as a little objectifying or creating a distance between the truth of the circumstances that resulted in our being transplanted.
My friend Isa often refers to to her lungs in relations to her donor. "Xavier's lungs", or something like that. I love that. They're not new, they belong to the original owner, and we are so lucky to be holding them now in their stead. Sadly, I don't know anything about my donors and so can't refer to the lungs in the same way.
I recognize the "organs are new to you" perspective but still wonder if I shouldn't be a little more mindful in how I refer to them in the future. It just feels as though the highest reverence should be used as a sign of respect for the awesome gift given....
Then again, maybe I am just overthinking it all?
See you tomorrow and good night.
Tomorrow is Sunday and I hope to have plenty of time to write a blog or two...until then, just a thought that passed through my mind...
When us recipients refer to our donor organs it's not uncommon for us to say "my new lungs" or my "my new heart." Perhaps I'm over thinking things, but I'm wondering if that could in any way be offensive to a donor family.
The organ is certainly not "new" and by saying so it makes it sound like we got in at Nordstom's or something. That language could be seen as a little objectifying or creating a distance between the truth of the circumstances that resulted in our being transplanted.
My friend Isa often refers to to her lungs in relations to her donor. "Xavier's lungs", or something like that. I love that. They're not new, they belong to the original owner, and we are so lucky to be holding them now in their stead. Sadly, I don't know anything about my donors and so can't refer to the lungs in the same way.
I recognize the "organs are new to you" perspective but still wonder if I shouldn't be a little more mindful in how I refer to them in the future. It just feels as though the highest reverence should be used as a sign of respect for the awesome gift given....
Then again, maybe I am just overthinking it all?
See you tomorrow and good night.
Sunday, January 18, 2009
Sticklers
Do you remember when you were a teenager and learning to drive? Did you grip the wheel with sweaty palms? Did you look 15 times before proceeding through a four way stop sign? Did your instructor chastise you if you crossed the double yellow line, went even slightly over the speed limit or moved your hands from the "10:00 and 2:00" position? There were so many rules, protocols, to follow. It all seemed so strict and unyielding. We were taught that to ignore one of these many protocols would surely result in a horrible car accident.
So now how do you drive? Do you still keep your hands at ten and two or do you drink your morning coffee with one hand and hold the steering wheel safely with the other? Have you ever crossed the yellow line to avoid and obstacle or because the road was completely deserted and it just didn't matter? Have you ever gotten lost and went the wrong way on a one way street, just for a second, to avoid an unwanted highway or traffic jam? Do you still concentrate on driving like you used to or is it now second nature?
Whenever we are practicing something new and important, we must pay attention to the rules, abide by the protocols and allow the techniques we are learning to become ingrained within us. Once we have enough practice, once we can trust ourselves and our experience, some of the vigilance will relax and will we be able to move outside of the rules safely. This is true of driving and this is true of navigating the healthcare maze.
The Vigilant Stickler
After transplant, patients are given literally lists of things they should not do. That can range from eating salad to not missing a dose of immuno-suppresant medication. The farther out a person is from their transplant some of those rules no longer apply and there are some rules that never waver. Each center has their own set of rules and each patient evolves in their belief of which protocols can be relaxed and which ones must remain steadfast. It is personal discretion in many cases and there are some professionals who understand this and others who won't tolerate it. Those who are unable to see the fluidity of certain protocols, I call "sticklers."
Our lung transplant clinic is held on Friday mornings. I was considering the pros and cons of the Nissen Fundoplication and my physician and nurse practitioner invited me to meet with them on a non-clinic day to discuss the surgery. When I went to clinic, there were no patients there. The only people in the area were administrative staff and my nurse. I checked in at the front desk and the head receptionist handed me a mask. Wearing a mask in clinic is normal protocol but we are free to take them off when we are alone in our exam room, for example. The method behind the mask is primarily to prevent immune-suppressed patients from transmitting any bacteria or viruses to eachother while waiting to be seen.
I took the mask from her with no intention of wearing it. I was alone in the waiting area! At one point, before my nurse had come to talk with me, the head receptionist came over and snapped at me, telling me to put the mask on right now or leave. I felt the anger boiling inside but had no real desire to fight this woman. I recognized her immediately--she was a stickler.
I put my mask on, deciding this was not a battle worth fighting. Soon after my nurse practitioner walked in, sat next to me, and we began a lively discussion. Partly because I felt protected by her presence and partly because it's difficult to be heard under the mask, I pulled the mask down for our conversation. Outraged, the stickler came running over to us and yelled, I mean yelled, at my nurse.
"Vicky, if she does not put that mask on right now she has to leave!!"
Vicky looked shocked and replied, "But we're alone. There are no patients here."
"I don't care, Vicky. Those are the rules. She has to wear her mask in the waiting room!"
"Um. Ok." Vicky was stunned.
What we were witnessing was the most vigilant species of Sticklers, the kind that obey and enforce the rules even when the experts tell them it's not necessary. This receptionist was so entrenched in her firey dedication to protocol that she had no hesitation chewing out her superior in an effort defend the rules and get her way.
I put my mask on and Vicky and I exchanged bewildered glances. Vicky mumbled "That was so unprofessional. She just doesn't get it." So true. She didn't get it. She was so busy being a stickler that she had not taken the time to understand why the rules were in place nor had she given any thought to when it may be appropriate to relax those rules.
I suppose intellectually that I understand her position. She had been told to enforce certain healthcare etiquette and she didn't need to know anything else. However, her demeanor and her lack of common sense made me feel both humiliated and furious. Haven't I been vulnerable enough throughout this process without the receptionist yelling at me like a small child? How dare this person assume that she understand the finer points of post-transplant life, and ignore both my experiences and the expertise of my nurse? When it was time for the meeting, I was still shaking from the experience. Happily, I never saw this particular stickler again.
Baby Sticklers
When I am being treated by interns, residents and sometimes even fellows, I affectionately (and privately) refer to them as Baby Docs. It may sound like a condescending term but I (usually) mean it purely as a term of endearment. I feel affection for Baby Docs because:
1. Many of them are close to me in age
2. Their demeanor can range from anxious to scared out of their minds
3. The newness of all they are learning and practicing is usually overwhelming
4. They work harder and more hours than any human should
In general Baby Docs seem to fear, above all else, "missing something." This of course makes perfect sense. Without experience as your guide, it is your responsibility to leave no stone left unturned. Some young healthcare professionals appear to have so much medical information crammed in their brains that they disregard the patient's input and focus only on the long list of possible (and obscure) illnesses the symptoms match. For those who cling to every detail, order every test and make mountains out of mole hills, I lovingly crown them Baby Sticklers.
Baby Sticklers, unlike Vigilant Sticklers, have the potential to be very helpful. One example of this happened to me a few years after my second transplant. I went to the emergency room because I had a very high fever and aching in the joints. Normally, I am familiar with my body's aches, upsets and fevers. This day, however, I was at a loss because I had never felt quite like this before.
At the ER, I was seen by the intern and the resident. They asked me the usual 10,000 questions and threw in a few more due to my unusual symptoms. CF related arthritus, a virus and rejection were all brought up as concerns. Eventually, my transplant doctor arrived and, while puzzled, decided to treat it with IV antibiotics, just as we would have a normal CF exaserbation. I was to be moved to the Pulmonary floor, get a PIC line and remain inpatient for a few days. It was all quite routine.
Shortly before I was to move upstaires (which in hospital time is a few hours) one of the Baby Docs came in with his eyes shining. He sat down next to me and said "You said you walk dogs for a living."
"Yes."
"Have you had any tick bites lately?"
"Actually, yes. I pulled a tick off about a week or so ago."
With that this Baby Doc stood up and, like a sceen from "House," he whispered "yes" while making the fist-elbow-to-side victory gesture. Because of the extensive history he had taken, his fresh ears and his tendancy to be a Baby Stickler, he had found the diagnosis--Rocky Mountain Spotted Fever. I went on oral antibiotics and recovered within a week.
While Baby Sticklers can be very helpful, they also have the potential to drag things out longer than needed and may have trouble letting things go. This next story is an embarassing one to tell, but it's the best example I have of the Overly Cautious Baby Stickler.
One day during the time before my second transplant when I was very sick and had only about 10% of my lung function, I was feeling uncomfortable. I felt as though I was more short of breath than usual so I turned up my oxygen. Later, I felt even more short of breath and turned it up again. This pattern continued through the morning. By the afternoon, I was practically gasping for air. I called my parents and they rushed over to be with me. I tried relaxing, changing positions and turning the oxygen up some more. I had gone from 2 liters of O2 to about 10--that's a huge jump. By mid-afternoon, we decided to take me to the ER. I couldn't walk on my own at this point.
When we got to the ER, there was a long wait and I sat in the wheelchair thinking "This is it. Today is the day I leave this earth." I was a jumble of emotions but mostly worried about my parents. When they took me to the back, I was met by a young resident, new to the transplant team. In retrospect, she knew what was happening and was very kind in the way she handled it. She simply said "Tiffany I want to try and turn the oxygen down a litttle bit and just see how you do, ok?" This made me very anxious but I agreed. Within minutes, I was no longer gasping for air and my breathing was as normal as it had been before the morning's events. Little did I know that turning the O2 up too high would cause severe shortness of breath!
As silly as I felt, I was also joyful and relieved. Today would not "be the day" and I was feeling so much better! I laughed and joked and prepared myself to be discharged. But nobody was coming in to have me sign the bye-bye papers so I could go home. The nurses kept saying that before I went home the doctor wanted to see me again. Eventually the resident who had so kindly turned down my oxygen returned. This time, she wanted to run a battery of tests, some of them pretty major. She explained that, while the episode was most likely a result of my oxygen being too high, she was uncomfortable sending me home without making very sure something else wasn't going on. She had gone down the list of possible problems in her head and landed on pulmonary embolism. Before I went home, she wanted to rule this out.
While I was certainly the dumb one who cranked up the O2 causing respitory distress, it seemed obvious to me that that was all that was going on. I told her I didn't want any more tests and I was comfortable with leaving well enough alone. She explained to me all of the reasons it could be something more serious and why she wouldn't be following proper protocol to let me go home. I was now beginning to see she was an Overly Cautious Baby Stickler. Common sense told me these tests weren't necessary so I asked if there was something I could sign to let her off the hook if I went home and dropped dead of a pulmonary embolism. In the world of Sticklers, this is how you fight fire with fire--follow protocols to relive them of their protocols. This Overly Cautious Baby Stickler felt fine letting me sign the paper and walking out the door--no stone had gone unturned and no rules had been bent. We were both happy.
What I Know Now
Even the most difficult of circumstances get easier with experience. Please note, I said easier, not easy. Living with illness may or may not bring truly easy days but there will at least be an ease with which you surf the breaking waves. When I talk to folks who are pre-transplant, it's not uncommon for them to be absolutely overwhelmed by all of the transplant medications. They say "How will we ever remember all of those meds and when to take them?" Like with most things, with time it becomes second nature and there is no anxiety or trouble remembering.
Having Vigilant or Overly Cautious Sticklers in your medical business can make these transitions a little more difficult and confusing at times. Just imagine if you had to ride in the car with your high school driver's ed teacher for the rest of your life! There would have to be some amount of negotiation about which rules you felt should be stuck by and which ones needed some slack. Just like with driving, when it comes to dealing with healthcare protocols, you must do your homework and understand why the rules were made, practice those rules until they become second nature and eventually loosen the rules in appropraite, wise and safe ways.
Sticklers are Sticklers for different reasons. Perhaps they have not spent much time in the Sick World and it makes them fearful or uneasy. Perhaps they have a personality that thrives on rules and protocols and see no reson to every stray from what they have been taught. Perhaps they are simply doing their job and have no control over relaxing or adjusting set rules--they would get in trouble if they didn't stick to being a Stickler.
So, whatever the reason, what is a patient to do when facing a Vigilant Stickler or a Baby Stickler who is being a little too careful? Fight when you have to, grin and bear it when you can and sign a release to get them off the hook when possible. Sticklers aren't bad people and they're not doing anything wrong. That doesn't mean, however, that we shouldn't continue to assert our rights to make our own healthcare decisions, preserve our own sanity and reserve the right to use common sense in the face of science!
You must understand the rules before you can break them. The most important lesson I've learned about going against a Vigilant or Overly Cautious Stickler? I better be sure I know what I'm doing because, if not, there's surely an "I told ya so" waiting if I'm wrong!!
So now how do you drive? Do you still keep your hands at ten and two or do you drink your morning coffee with one hand and hold the steering wheel safely with the other? Have you ever crossed the yellow line to avoid and obstacle or because the road was completely deserted and it just didn't matter? Have you ever gotten lost and went the wrong way on a one way street, just for a second, to avoid an unwanted highway or traffic jam? Do you still concentrate on driving like you used to or is it now second nature?
Whenever we are practicing something new and important, we must pay attention to the rules, abide by the protocols and allow the techniques we are learning to become ingrained within us. Once we have enough practice, once we can trust ourselves and our experience, some of the vigilance will relax and will we be able to move outside of the rules safely. This is true of driving and this is true of navigating the healthcare maze.
The Vigilant Stickler
After transplant, patients are given literally lists of things they should not do. That can range from eating salad to not missing a dose of immuno-suppresant medication. The farther out a person is from their transplant some of those rules no longer apply and there are some rules that never waver. Each center has their own set of rules and each patient evolves in their belief of which protocols can be relaxed and which ones must remain steadfast. It is personal discretion in many cases and there are some professionals who understand this and others who won't tolerate it. Those who are unable to see the fluidity of certain protocols, I call "sticklers."
Our lung transplant clinic is held on Friday mornings. I was considering the pros and cons of the Nissen Fundoplication and my physician and nurse practitioner invited me to meet with them on a non-clinic day to discuss the surgery. When I went to clinic, there were no patients there. The only people in the area were administrative staff and my nurse. I checked in at the front desk and the head receptionist handed me a mask. Wearing a mask in clinic is normal protocol but we are free to take them off when we are alone in our exam room, for example. The method behind the mask is primarily to prevent immune-suppressed patients from transmitting any bacteria or viruses to eachother while waiting to be seen.
I took the mask from her with no intention of wearing it. I was alone in the waiting area! At one point, before my nurse had come to talk with me, the head receptionist came over and snapped at me, telling me to put the mask on right now or leave. I felt the anger boiling inside but had no real desire to fight this woman. I recognized her immediately--she was a stickler.
I put my mask on, deciding this was not a battle worth fighting. Soon after my nurse practitioner walked in, sat next to me, and we began a lively discussion. Partly because I felt protected by her presence and partly because it's difficult to be heard under the mask, I pulled the mask down for our conversation. Outraged, the stickler came running over to us and yelled, I mean yelled, at my nurse.
"Vicky, if she does not put that mask on right now she has to leave!!"
Vicky looked shocked and replied, "But we're alone. There are no patients here."
"I don't care, Vicky. Those are the rules. She has to wear her mask in the waiting room!"
"Um. Ok." Vicky was stunned.
What we were witnessing was the most vigilant species of Sticklers, the kind that obey and enforce the rules even when the experts tell them it's not necessary. This receptionist was so entrenched in her firey dedication to protocol that she had no hesitation chewing out her superior in an effort defend the rules and get her way.
I put my mask on and Vicky and I exchanged bewildered glances. Vicky mumbled "That was so unprofessional. She just doesn't get it." So true. She didn't get it. She was so busy being a stickler that she had not taken the time to understand why the rules were in place nor had she given any thought to when it may be appropriate to relax those rules.
I suppose intellectually that I understand her position. She had been told to enforce certain healthcare etiquette and she didn't need to know anything else. However, her demeanor and her lack of common sense made me feel both humiliated and furious. Haven't I been vulnerable enough throughout this process without the receptionist yelling at me like a small child? How dare this person assume that she understand the finer points of post-transplant life, and ignore both my experiences and the expertise of my nurse? When it was time for the meeting, I was still shaking from the experience. Happily, I never saw this particular stickler again.
Baby Sticklers
When I am being treated by interns, residents and sometimes even fellows, I affectionately (and privately) refer to them as Baby Docs. It may sound like a condescending term but I (usually) mean it purely as a term of endearment. I feel affection for Baby Docs because:
1. Many of them are close to me in age
2. Their demeanor can range from anxious to scared out of their minds
3. The newness of all they are learning and practicing is usually overwhelming
4. They work harder and more hours than any human should
In general Baby Docs seem to fear, above all else, "missing something." This of course makes perfect sense. Without experience as your guide, it is your responsibility to leave no stone left unturned. Some young healthcare professionals appear to have so much medical information crammed in their brains that they disregard the patient's input and focus only on the long list of possible (and obscure) illnesses the symptoms match. For those who cling to every detail, order every test and make mountains out of mole hills, I lovingly crown them Baby Sticklers.
Baby Sticklers, unlike Vigilant Sticklers, have the potential to be very helpful. One example of this happened to me a few years after my second transplant. I went to the emergency room because I had a very high fever and aching in the joints. Normally, I am familiar with my body's aches, upsets and fevers. This day, however, I was at a loss because I had never felt quite like this before.
At the ER, I was seen by the intern and the resident. They asked me the usual 10,000 questions and threw in a few more due to my unusual symptoms. CF related arthritus, a virus and rejection were all brought up as concerns. Eventually, my transplant doctor arrived and, while puzzled, decided to treat it with IV antibiotics, just as we would have a normal CF exaserbation. I was to be moved to the Pulmonary floor, get a PIC line and remain inpatient for a few days. It was all quite routine.
Shortly before I was to move upstaires (which in hospital time is a few hours) one of the Baby Docs came in with his eyes shining. He sat down next to me and said "You said you walk dogs for a living."
"Yes."
"Have you had any tick bites lately?"
"Actually, yes. I pulled a tick off about a week or so ago."
With that this Baby Doc stood up and, like a sceen from "House," he whispered "yes" while making the fist-elbow-to-side victory gesture. Because of the extensive history he had taken, his fresh ears and his tendancy to be a Baby Stickler, he had found the diagnosis--Rocky Mountain Spotted Fever. I went on oral antibiotics and recovered within a week.
While Baby Sticklers can be very helpful, they also have the potential to drag things out longer than needed and may have trouble letting things go. This next story is an embarassing one to tell, but it's the best example I have of the Overly Cautious Baby Stickler.
One day during the time before my second transplant when I was very sick and had only about 10% of my lung function, I was feeling uncomfortable. I felt as though I was more short of breath than usual so I turned up my oxygen. Later, I felt even more short of breath and turned it up again. This pattern continued through the morning. By the afternoon, I was practically gasping for air. I called my parents and they rushed over to be with me. I tried relaxing, changing positions and turning the oxygen up some more. I had gone from 2 liters of O2 to about 10--that's a huge jump. By mid-afternoon, we decided to take me to the ER. I couldn't walk on my own at this point.
When we got to the ER, there was a long wait and I sat in the wheelchair thinking "This is it. Today is the day I leave this earth." I was a jumble of emotions but mostly worried about my parents. When they took me to the back, I was met by a young resident, new to the transplant team. In retrospect, she knew what was happening and was very kind in the way she handled it. She simply said "Tiffany I want to try and turn the oxygen down a litttle bit and just see how you do, ok?" This made me very anxious but I agreed. Within minutes, I was no longer gasping for air and my breathing was as normal as it had been before the morning's events. Little did I know that turning the O2 up too high would cause severe shortness of breath!
As silly as I felt, I was also joyful and relieved. Today would not "be the day" and I was feeling so much better! I laughed and joked and prepared myself to be discharged. But nobody was coming in to have me sign the bye-bye papers so I could go home. The nurses kept saying that before I went home the doctor wanted to see me again. Eventually the resident who had so kindly turned down my oxygen returned. This time, she wanted to run a battery of tests, some of them pretty major. She explained that, while the episode was most likely a result of my oxygen being too high, she was uncomfortable sending me home without making very sure something else wasn't going on. She had gone down the list of possible problems in her head and landed on pulmonary embolism. Before I went home, she wanted to rule this out.
While I was certainly the dumb one who cranked up the O2 causing respitory distress, it seemed obvious to me that that was all that was going on. I told her I didn't want any more tests and I was comfortable with leaving well enough alone. She explained to me all of the reasons it could be something more serious and why she wouldn't be following proper protocol to let me go home. I was now beginning to see she was an Overly Cautious Baby Stickler. Common sense told me these tests weren't necessary so I asked if there was something I could sign to let her off the hook if I went home and dropped dead of a pulmonary embolism. In the world of Sticklers, this is how you fight fire with fire--follow protocols to relive them of their protocols. This Overly Cautious Baby Stickler felt fine letting me sign the paper and walking out the door--no stone had gone unturned and no rules had been bent. We were both happy.
What I Know Now
Even the most difficult of circumstances get easier with experience. Please note, I said easier, not easy. Living with illness may or may not bring truly easy days but there will at least be an ease with which you surf the breaking waves. When I talk to folks who are pre-transplant, it's not uncommon for them to be absolutely overwhelmed by all of the transplant medications. They say "How will we ever remember all of those meds and when to take them?" Like with most things, with time it becomes second nature and there is no anxiety or trouble remembering.
Having Vigilant or Overly Cautious Sticklers in your medical business can make these transitions a little more difficult and confusing at times. Just imagine if you had to ride in the car with your high school driver's ed teacher for the rest of your life! There would have to be some amount of negotiation about which rules you felt should be stuck by and which ones needed some slack. Just like with driving, when it comes to dealing with healthcare protocols, you must do your homework and understand why the rules were made, practice those rules until they become second nature and eventually loosen the rules in appropraite, wise and safe ways.
Sticklers are Sticklers for different reasons. Perhaps they have not spent much time in the Sick World and it makes them fearful or uneasy. Perhaps they have a personality that thrives on rules and protocols and see no reson to every stray from what they have been taught. Perhaps they are simply doing their job and have no control over relaxing or adjusting set rules--they would get in trouble if they didn't stick to being a Stickler.
So, whatever the reason, what is a patient to do when facing a Vigilant Stickler or a Baby Stickler who is being a little too careful? Fight when you have to, grin and bear it when you can and sign a release to get them off the hook when possible. Sticklers aren't bad people and they're not doing anything wrong. That doesn't mean, however, that we shouldn't continue to assert our rights to make our own healthcare decisions, preserve our own sanity and reserve the right to use common sense in the face of science!
You must understand the rules before you can break them. The most important lesson I've learned about going against a Vigilant or Overly Cautious Stickler? I better be sure I know what I'm doing because, if not, there's surely an "I told ya so" waiting if I'm wrong!!
Thursday, January 15, 2009
I'm Fine, How Dare You Say I'm Fine
There is a conflicting need within many patients to both be seen as a strong individual, separate from illness, and to also be acknowledged for the suffering they endure.
When I was waiting for my first transplant, I was dating a guy who wasn't always very sensitive to my illness. More than anyone, he brought this dichotomy out of me.
Guy: "I don't know if I can really be with a sick person."
Me: "Guy, I can't believe you see me that way! Sure, I may have some health issues but I don't let them get me down! I still do most of the things normal people do. I may have CF but CF is not my identity! I am not a 'sick person', I am Tiffany!"
Guy: "Yea, I guess you're right. I was talking to my friend about you today and he was asking me why you didn't work..."
Me: "Did you tell him it's because I was waiting for a LUNG TRANSPLANT?"
Guy: "No. I thought you weren't that sick. I mean you could work if you wanted to."
Me: "Guy, I can't believe you would say that! Do you not see how difficult simple things are for me? I have treatments and therapy to do and just doing ordinary errands tires me out so much I have to nap for hours. I have CF, asthma, and anemia! I'm waiting for a lung transplant! I can't believe you think I could work!"
(This conversation has been a condensed dramatization although, not far from the truth.)
I see this particular dynamic often on the online support groups for CF. In one moment a person with CF may be asserting that they are still able to work and be independent because they are exceptionally dedicated to caring for their health. They may even go so far as to criticize another patient for needing financial support, implying that if they took better care of themselves or resisted the urge to be a lazy patient, they too could live without being dependent on others.
As you might imagine, this particular perspective ruffles some feathers. An inevitable response from those who do need to rely on others is that they "have a more severe gene mutation" or they are simply "sicker than those who can continue working etc." This usually results in an explosion from those who originally implied that other patients did not care for themselves sufficiently or chose to rest on their genetic laurels.
Amazingly, the people who began by shouting from the rooftops about how healthy and self-sufficient they are quickly turn the tide with a litany of debilitating ailments. Suddenly, they can barely make it from one room to the other and each day is a struggle. In one conversation, they contradict themselves completely but seem to be oblivious to this inconsistency. When this is brought to their attention, the invariably flip-flop back to the original perspective--they are healthy, strong and exceptional.
It may sound as though I am harshly criticizing my fellow patients and, admittedly, this dynamic has the power to irritate me at times. More often than not, however, I can relate on some very deep and difficult to articulate level. I live my life in very much the same way, it's simply easier to see when other people do it.
I pride myself on living a full and busy post-transplant life. I appreciate when people acknowledge that I work hard. I often speak of my gratitude and how I would never change a thing about my illness journey. All of what I'm saying is true.
A few times during my travels kind, innocent and unsuspecting audience members have congratulated me on my new lease on life, a life with no more physical obstacles. To this I immaturely respond with my long list of current medical problems, even the ones that don't bother me very much. Why? Because I am both healthy and unhealthy. Because, as much as it is a contradiction, I want you to see me as strong and fragile at the same time. As much as I want you to see me as an independent, healthy woman I also need for you to appreciate my struggle.
As I write this, it has become clear to me for the first time where this seemingly illogical paradox comes from. My deepest perception of myself is found walking the line between strength and fragility. I walk that line every day, as do so many other people with chronic illness. I know that in this moment I feel strong but in a few hours, days, weeks or years, I will be weak again. I may be strong today but years of sickness have worn me down on the inside, eroded parts of me that I can not get back.
And here we have yet another area of gray that makes up the Art of Illness. I may present you with one side of myself, the healthy side or the sick side, and yet that is only a two dimensional projection for you to witness. Please believe me when I tell you who I am in the moment but always remember that I am three dimensional and can not always keep track of my full self. In truth, I am wholly and completely both robust and fragile.
"I am fine, but just don't agree with me!"
"I am sick but that is not for you to say!"
When I was waiting for my first transplant, I was dating a guy who wasn't always very sensitive to my illness. More than anyone, he brought this dichotomy out of me.
Guy: "I don't know if I can really be with a sick person."
Me: "Guy, I can't believe you see me that way! Sure, I may have some health issues but I don't let them get me down! I still do most of the things normal people do. I may have CF but CF is not my identity! I am not a 'sick person', I am Tiffany!"
Guy: "Yea, I guess you're right. I was talking to my friend about you today and he was asking me why you didn't work..."
Me: "Did you tell him it's because I was waiting for a LUNG TRANSPLANT?"
Guy: "No. I thought you weren't that sick. I mean you could work if you wanted to."
Me: "Guy, I can't believe you would say that! Do you not see how difficult simple things are for me? I have treatments and therapy to do and just doing ordinary errands tires me out so much I have to nap for hours. I have CF, asthma, and anemia! I'm waiting for a lung transplant! I can't believe you think I could work!"
(This conversation has been a condensed dramatization although, not far from the truth.)
I see this particular dynamic often on the online support groups for CF. In one moment a person with CF may be asserting that they are still able to work and be independent because they are exceptionally dedicated to caring for their health. They may even go so far as to criticize another patient for needing financial support, implying that if they took better care of themselves or resisted the urge to be a lazy patient, they too could live without being dependent on others.
As you might imagine, this particular perspective ruffles some feathers. An inevitable response from those who do need to rely on others is that they "have a more severe gene mutation" or they are simply "sicker than those who can continue working etc." This usually results in an explosion from those who originally implied that other patients did not care for themselves sufficiently or chose to rest on their genetic laurels.
Amazingly, the people who began by shouting from the rooftops about how healthy and self-sufficient they are quickly turn the tide with a litany of debilitating ailments. Suddenly, they can barely make it from one room to the other and each day is a struggle. In one conversation, they contradict themselves completely but seem to be oblivious to this inconsistency. When this is brought to their attention, the invariably flip-flop back to the original perspective--they are healthy, strong and exceptional.
It may sound as though I am harshly criticizing my fellow patients and, admittedly, this dynamic has the power to irritate me at times. More often than not, however, I can relate on some very deep and difficult to articulate level. I live my life in very much the same way, it's simply easier to see when other people do it.
I pride myself on living a full and busy post-transplant life. I appreciate when people acknowledge that I work hard. I often speak of my gratitude and how I would never change a thing about my illness journey. All of what I'm saying is true.
A few times during my travels kind, innocent and unsuspecting audience members have congratulated me on my new lease on life, a life with no more physical obstacles. To this I immaturely respond with my long list of current medical problems, even the ones that don't bother me very much. Why? Because I am both healthy and unhealthy. Because, as much as it is a contradiction, I want you to see me as strong and fragile at the same time. As much as I want you to see me as an independent, healthy woman I also need for you to appreciate my struggle.
As I write this, it has become clear to me for the first time where this seemingly illogical paradox comes from. My deepest perception of myself is found walking the line between strength and fragility. I walk that line every day, as do so many other people with chronic illness. I know that in this moment I feel strong but in a few hours, days, weeks or years, I will be weak again. I may be strong today but years of sickness have worn me down on the inside, eroded parts of me that I can not get back.
And here we have yet another area of gray that makes up the Art of Illness. I may present you with one side of myself, the healthy side or the sick side, and yet that is only a two dimensional projection for you to witness. Please believe me when I tell you who I am in the moment but always remember that I am three dimensional and can not always keep track of my full self. In truth, I am wholly and completely both robust and fragile.
"I am fine, but just don't agree with me!"
"I am sick but that is not for you to say!"
Wednesday, January 14, 2009
Walking in Peace
I am discovering again just how much sweeter and more beautiful life is when you go through it at a walk, not a run.
My aspirations drive me to do more in a day and make strides towards...towards what? World domination? Outter space? Oprah? Who knows...sometimes the drive has a life of its own.
2009 has started out by me deeply evaluating where I am and where I want to be. While my career is a wonderful thing, 2007 was a blur. It's time to move back to the place of peace, believing in my worth no matter what my day planner looks like and practicing the gratitude for each day that I preach.
So what does that mean to you? More than likely, it means I'm going to take a little longer emailing, calling or texting you. But when we do connect? You will find a much happier and more open person on the other end.
My aspirations drive me to do more in a day and make strides towards...towards what? World domination? Outter space? Oprah? Who knows...sometimes the drive has a life of its own.
2009 has started out by me deeply evaluating where I am and where I want to be. While my career is a wonderful thing, 2007 was a blur. It's time to move back to the place of peace, believing in my worth no matter what my day planner looks like and practicing the gratitude for each day that I preach.
So what does that mean to you? More than likely, it means I'm going to take a little longer emailing, calling or texting you. But when we do connect? You will find a much happier and more open person on the other end.
Tuesday, January 13, 2009
The Art of Illness
I was driving down the road yesterday listening to an interview with Norman Cousins about how to take advantage of the body's own apothecary and heal oneself with love, laughter and hope.
A few nights ago, I watched Barbara Walters interview Patrick Swayze about living with Pancreatic Cancer.
A year ago this month, I lost one of my best friends to chronic rejection after she fought harder than I ever dreamed possible.
And because of all of these things, today I am immobile with grief and a sense of overwhelm.
From the moment we enter this world, we are taught to put all of life into one of two categories.
"Do you like this color or do you not like this color?"
"Do you like sports or art?"
"Are you a democrat or a republican?"
We define ourselves and our lives with black and white answers to simple questions. Illness is not so different.
"Are you sick or healthy?"
"Are you a fighter or are you giving up?"
"Are you living or dying?"
As I continue to explore the feelings and experiences of those who face illness (myself included) I sometimes find myself in a place of conflict, confusion and sadness. It was not until the convergence of the Norman Cousin and Patrick Swayze interviews, along with the anniversary of my friend's death, that these emotions came into focus for me.
I can not place my illness inside of your black and white boxes anymore. I can not continue to live by the limited labels you have assigned to me. I can not find peace in the contradictions until I have permission to believe everything at once. I have to live consciously and continue to walk the lines between acceptance and outrage. I must pull myself out from under your judgments and begin to live with this body as it fits the moment.
Draw Your Own Conclusions
During the Norman Cousins interview, he sited two significant studies about the power of the mind over illness. The first of the studies involved about 100 medical students, some of whom were given a barbiturate and some who were given a amphetamine. The trick, of course, was that the students were told the pill was the opposite of its true chemical compound--so the people getting stimulants were really getting downers and vise versa. 50% of the students reacted in line with the expectation, not the chemical reality of the pill.
The second study he sited was a true placebo study in which patients were told the medication they were ingesting would make their hair fall out. The pill itself was actually a sugar pill and 50% of those studied experienced significant hair loss.
The conclusion Norman Cousins made in this interview was that each study "proves the mind is more powerful than medication." Is that true? Is that what the studies prove? From where I sit it proves that for half of a given population the mind is more powerful than the medication. It also proves that for half of a given population, medication is more powerful than the mind.
As a patient, when I hear this Harvard Educated professional make such a strong case for why we have so much control over our own bodies, I feel both inspired and overwhelmed. I feel empowered and burdened with responsibility.
Do I have a choice of which half of the population I will find myself? Will I align myself with the reality or the expectation? Do I have the energy to heal myself or is that even in my power? In what parts of my life have I allowed the diagnosis to guide my expectations instead of rising above statistics and believing in my own power?
The Illness Cowboy
When I was watching Patrick Swayze talk about living with pancreatic cancer, I saw someone who was angry and sad about his illness. He stood on platitudes like, "I'm going to beat this thing" and "just watch, I'll be here in years to come." I found myself tearing up at the pain I was witnessing. I also was yelling at the screen, as if to will him through the television to stop the "act" and find peace with what we all know to be his inevitable outcome.
Having found truest peace in the soft bed of acceptance, I often pity those who run from its comfort. For me, acceptance is the path to peace. When I watched Patrick Swayze I saw a man denying his truth and apporaching the illness like a John Wayne charater--the Illness Cowboy. The human will is an amazing thing, no doubt it is what has contributed to him living so far past his diagnosis.
That said, when is it time to stop galloping in the opposite direction, get off of the horse and call a truce with illness and even death? When is the fight an act of cowardice and when in surrender the truest sign of bravery?
Western Omlet
Western medicine is in the business of black and white. Those who practice it usually live by statistics, research and physical clues. The job of the doctor is to speak and act in definates.
"You have cancer."
"There is nothing wrong with you--You're physical problems are all in your head."
"You have six months to live."
"You will be just fine."
As someone who has lived through the pain and confusion of a terminal mis-diagnosis, I know the power of gray posing as black and white. But it's what we want, isn't it?
We have all heard the stories, we know the legends. A patient with cancer baffles the doctors with a miraculous recovery. A patient diagnosed with acid reflux is discharged only to have a fatal heart attack hours after leaving the hospital. The list goes on and on, right? If you are looking for a story about doctors being wrong, you do not have to look very far.
The same could be said about the stories of doctors being right. Why do you think the show "House" is so popular? Because we love to watch the unexplainable be explained. We love the mysteries of the body to be revealed by the smart, dedicated and highly educated physician. We love to feel safe in knowing there are answers when we are most vulnerbale to the unknown.
The truth is, however, that sometimes the clear proclamations of healthcare profesionals are guesses. Sometimes, they are basing the information on statistics which, in the end, will mirror little of your individual experience. Sometimes, the result would have been the same whether you sought treatment or not. Sometimes, western medicine will be the difference between life and death.
Because we can not live two parallel lives making different choices in each, we will never know what would've happened if we had decided to choose a different path.
Just Because You Fight Does Not Mean You "Win"
I believe in the power of the will to live. More spcifically, I believed in the power of my friend Ruth's will to live. She was sick, we all knew she was. She never hid the fact that she had chronic rejection and often sent out emails to let friends and family know the latest update on her health. Every email ended on a positive note and she never gave in. I suppose I followed her lead, focused on the last sentence in the email and assumed her health would somehow stabilize.
The month before she died, Ruth finished two graduate classes (both with an A), went to work every day and found time for those of us who needed her. As sick as she was, her death was a shock. Why? Because her fight was so strong, it was blinding. Later, when I went back and read all of her emails, I saw that she was telling us the truth all along, I just couldn't quite see it through all the living she was doing. Each email was a little worse than the last; her lung function was dropping, the procedure did not seem to work, she was not responding to the new treatment, they were running out of options. It was all there in black and white but her aliveness did not allow me to put her in a balck and white box. She was living and dying; something few of us have a context for.
Ruth taught me so many things. I never want to boil her life down to one accomplishment or one legacy. She, in herself, deserves an entire book and at least one movie. But one of the greatest lessons I learned from Ruth is what nags at me when I listen to people like Norman Cousins. Sometimes, we can do everything right; we can have all of the passion and purpose in the world and we can fight like hell but our mind will not "win" over our body. Sometimes, when we want to live more than anything, it is still our time to die.
Is there someone out there who would tell me Ruth could have fought harder, changed her fate with a meditation, a way of life? Is there a doctor some where, some place that could have done something differently? When it's "our time" is there anything that can be done? Can fate be manipulated?
What I Know Now
What I know now is that I know, for sure, very little. I know that I have conflicting beliefs and that is very uncomfortable. I know that I want black and white answers but need to begin to train my brain to accept competing thoughts as simultaneous truths.
I know that I believe in the power of my own thoughts, beliefs and emotions. I know that they can and do impact my physical health.
I know that Western Medicine is flawed and does not always support me as a whole, sentient being. I also know that it has saved my life and given me more tomorrows than I ever imagined possible.
I know that I believe in finding peace through accpeting what fate has given you. I also don't know when I am accpeting fate and when I am accepting a mere story that will serve to help me shape my fate, even if that was not the only possible outcome.
I know that sometimes I am inspired by the idea of having power over my body. I know that sometimes, I am powerless but feel guilty because others tell me I can be stronger, better, more in control.
I know that sometimes our will to live will bring us far beyond any expectations. I also know that sometimes the body gives out, no matter how passionate we are about living.
It has been a relief and a revelation for me to realize that I walk around with thousands of conflicting beliefs about illness and one's power over it. I know that I must now begin to trust myself to use what I can to live well, to know when bravery means surrender and to never project myself onto others living with illness.
There are so many people out there who have all the answers to life with illness. I used to think I had to choose one of those answers and live by it, refuting all other approaches. What I know know is that they are all true and they are all false, it simply depends on where you stand in the illness journey.
I won't promise to stop trying to make sense out of living with illness. After all, that is what makes me appreciate what it means to be a part of the Sick World. What I will promise is that I will stop beating myself up for not "being stronger in my convictions" and understand that all approached can simultaneously exist.
I now know that there is an Art to Illness. The Art of Illness is being conscious of where you are emotionally and physically, gathering advice and inspiration from others and using what works when it works. Today may be the day for the battle, tomorrow may be the day for quiet rest and there may come a day for peacefully acceptance of life's permanent changes. The key is not getting attached to any approach, honoring them all and always making self-compassion the focus.
Like writing a song or putting paint to canvas, we can never know the beauty we are creating in this moment. When it is done out of integrity and respect for the authentic self, however, the beauty is inevitable. It's time to say goodbye to black and white living and embrace the ever fluid, always forgiving, Art of Illness.
A few nights ago, I watched Barbara Walters interview Patrick Swayze about living with Pancreatic Cancer.
A year ago this month, I lost one of my best friends to chronic rejection after she fought harder than I ever dreamed possible.
And because of all of these things, today I am immobile with grief and a sense of overwhelm.
From the moment we enter this world, we are taught to put all of life into one of two categories.
"Do you like this color or do you not like this color?"
"Do you like sports or art?"
"Are you a democrat or a republican?"
We define ourselves and our lives with black and white answers to simple questions. Illness is not so different.
"Are you sick or healthy?"
"Are you a fighter or are you giving up?"
"Are you living or dying?"
As I continue to explore the feelings and experiences of those who face illness (myself included) I sometimes find myself in a place of conflict, confusion and sadness. It was not until the convergence of the Norman Cousin and Patrick Swayze interviews, along with the anniversary of my friend's death, that these emotions came into focus for me.
I can not place my illness inside of your black and white boxes anymore. I can not continue to live by the limited labels you have assigned to me. I can not find peace in the contradictions until I have permission to believe everything at once. I have to live consciously and continue to walk the lines between acceptance and outrage. I must pull myself out from under your judgments and begin to live with this body as it fits the moment.
Draw Your Own Conclusions
During the Norman Cousins interview, he sited two significant studies about the power of the mind over illness. The first of the studies involved about 100 medical students, some of whom were given a barbiturate and some who were given a amphetamine. The trick, of course, was that the students were told the pill was the opposite of its true chemical compound--so the people getting stimulants were really getting downers and vise versa. 50% of the students reacted in line with the expectation, not the chemical reality of the pill.
The second study he sited was a true placebo study in which patients were told the medication they were ingesting would make their hair fall out. The pill itself was actually a sugar pill and 50% of those studied experienced significant hair loss.
The conclusion Norman Cousins made in this interview was that each study "proves the mind is more powerful than medication." Is that true? Is that what the studies prove? From where I sit it proves that for half of a given population the mind is more powerful than the medication. It also proves that for half of a given population, medication is more powerful than the mind.
As a patient, when I hear this Harvard Educated professional make such a strong case for why we have so much control over our own bodies, I feel both inspired and overwhelmed. I feel empowered and burdened with responsibility.
Do I have a choice of which half of the population I will find myself? Will I align myself with the reality or the expectation? Do I have the energy to heal myself or is that even in my power? In what parts of my life have I allowed the diagnosis to guide my expectations instead of rising above statistics and believing in my own power?
The Illness Cowboy
When I was watching Patrick Swayze talk about living with pancreatic cancer, I saw someone who was angry and sad about his illness. He stood on platitudes like, "I'm going to beat this thing" and "just watch, I'll be here in years to come." I found myself tearing up at the pain I was witnessing. I also was yelling at the screen, as if to will him through the television to stop the "act" and find peace with what we all know to be his inevitable outcome.
Having found truest peace in the soft bed of acceptance, I often pity those who run from its comfort. For me, acceptance is the path to peace. When I watched Patrick Swayze I saw a man denying his truth and apporaching the illness like a John Wayne charater--the Illness Cowboy. The human will is an amazing thing, no doubt it is what has contributed to him living so far past his diagnosis.
That said, when is it time to stop galloping in the opposite direction, get off of the horse and call a truce with illness and even death? When is the fight an act of cowardice and when in surrender the truest sign of bravery?
Western Omlet
Western medicine is in the business of black and white. Those who practice it usually live by statistics, research and physical clues. The job of the doctor is to speak and act in definates.
"You have cancer."
"There is nothing wrong with you--You're physical problems are all in your head."
"You have six months to live."
"You will be just fine."
As someone who has lived through the pain and confusion of a terminal mis-diagnosis, I know the power of gray posing as black and white. But it's what we want, isn't it?
We have all heard the stories, we know the legends. A patient with cancer baffles the doctors with a miraculous recovery. A patient diagnosed with acid reflux is discharged only to have a fatal heart attack hours after leaving the hospital. The list goes on and on, right? If you are looking for a story about doctors being wrong, you do not have to look very far.
The same could be said about the stories of doctors being right. Why do you think the show "House" is so popular? Because we love to watch the unexplainable be explained. We love the mysteries of the body to be revealed by the smart, dedicated and highly educated physician. We love to feel safe in knowing there are answers when we are most vulnerbale to the unknown.
The truth is, however, that sometimes the clear proclamations of healthcare profesionals are guesses. Sometimes, they are basing the information on statistics which, in the end, will mirror little of your individual experience. Sometimes, the result would have been the same whether you sought treatment or not. Sometimes, western medicine will be the difference between life and death.
Because we can not live two parallel lives making different choices in each, we will never know what would've happened if we had decided to choose a different path.
Just Because You Fight Does Not Mean You "Win"
I believe in the power of the will to live. More spcifically, I believed in the power of my friend Ruth's will to live. She was sick, we all knew she was. She never hid the fact that she had chronic rejection and often sent out emails to let friends and family know the latest update on her health. Every email ended on a positive note and she never gave in. I suppose I followed her lead, focused on the last sentence in the email and assumed her health would somehow stabilize.
The month before she died, Ruth finished two graduate classes (both with an A), went to work every day and found time for those of us who needed her. As sick as she was, her death was a shock. Why? Because her fight was so strong, it was blinding. Later, when I went back and read all of her emails, I saw that she was telling us the truth all along, I just couldn't quite see it through all the living she was doing. Each email was a little worse than the last; her lung function was dropping, the procedure did not seem to work, she was not responding to the new treatment, they were running out of options. It was all there in black and white but her aliveness did not allow me to put her in a balck and white box. She was living and dying; something few of us have a context for.
Ruth taught me so many things. I never want to boil her life down to one accomplishment or one legacy. She, in herself, deserves an entire book and at least one movie. But one of the greatest lessons I learned from Ruth is what nags at me when I listen to people like Norman Cousins. Sometimes, we can do everything right; we can have all of the passion and purpose in the world and we can fight like hell but our mind will not "win" over our body. Sometimes, when we want to live more than anything, it is still our time to die.
Is there someone out there who would tell me Ruth could have fought harder, changed her fate with a meditation, a way of life? Is there a doctor some where, some place that could have done something differently? When it's "our time" is there anything that can be done? Can fate be manipulated?
What I Know Now
What I know now is that I know, for sure, very little. I know that I have conflicting beliefs and that is very uncomfortable. I know that I want black and white answers but need to begin to train my brain to accept competing thoughts as simultaneous truths.
I know that I believe in the power of my own thoughts, beliefs and emotions. I know that they can and do impact my physical health.
I know that Western Medicine is flawed and does not always support me as a whole, sentient being. I also know that it has saved my life and given me more tomorrows than I ever imagined possible.
I know that I believe in finding peace through accpeting what fate has given you. I also don't know when I am accpeting fate and when I am accepting a mere story that will serve to help me shape my fate, even if that was not the only possible outcome.
I know that sometimes I am inspired by the idea of having power over my body. I know that sometimes, I am powerless but feel guilty because others tell me I can be stronger, better, more in control.
I know that sometimes our will to live will bring us far beyond any expectations. I also know that sometimes the body gives out, no matter how passionate we are about living.
It has been a relief and a revelation for me to realize that I walk around with thousands of conflicting beliefs about illness and one's power over it. I know that I must now begin to trust myself to use what I can to live well, to know when bravery means surrender and to never project myself onto others living with illness.
There are so many people out there who have all the answers to life with illness. I used to think I had to choose one of those answers and live by it, refuting all other approaches. What I know know is that they are all true and they are all false, it simply depends on where you stand in the illness journey.
I won't promise to stop trying to make sense out of living with illness. After all, that is what makes me appreciate what it means to be a part of the Sick World. What I will promise is that I will stop beating myself up for not "being stronger in my convictions" and understand that all approached can simultaneously exist.
I now know that there is an Art to Illness. The Art of Illness is being conscious of where you are emotionally and physically, gathering advice and inspiration from others and using what works when it works. Today may be the day for the battle, tomorrow may be the day for quiet rest and there may come a day for peacefully acceptance of life's permanent changes. The key is not getting attached to any approach, honoring them all and always making self-compassion the focus.
Like writing a song or putting paint to canvas, we can never know the beauty we are creating in this moment. When it is done out of integrity and respect for the authentic self, however, the beauty is inevitable. It's time to say goodbye to black and white living and embrace the ever fluid, always forgiving, Art of Illness.
Monday, January 12, 2009
No Matter
No matter how much potential there is in this moment...
No matter how much beauty there is around me...
No matter how alive the conversation is, buzzing around my head...
No matter how much I want to feel inspired...
When I feel deeply tired, I can not connect or feel any of these things.
No matter how many times I go through this...
No matter how many times I have returned to vibrating with the world...
No matter how many affirmations I repeat...
No matter how sure I am that this will be okay...
I still feel scared about my health and alone because I can not feel my purpose.
No matter if I am being irrational...
No matter if I am repeating myself...
No matter if I have forgotten my worth once again...
No matter if I will be okay tomorrow...
You continue to support, comfort and lift me up. Thank you.
Most days, I love my life. On days like today when I can not feel that love, you hold it for me until I have the energy to vibrate again.
It took a village to save my life and now, some days, it can take a village to remind me of what I am here to do.
To those who lift me up when I am low, thank you.
To those who let me soar when it's time to fly, thank you.
For those who love me no matter what, thank you.
No matter how my life ebbs and flows, I am grateful for you.
No matter how much beauty there is around me...
No matter how alive the conversation is, buzzing around my head...
No matter how much I want to feel inspired...
When I feel deeply tired, I can not connect or feel any of these things.
No matter how many times I go through this...
No matter how many times I have returned to vibrating with the world...
No matter how many affirmations I repeat...
No matter how sure I am that this will be okay...
I still feel scared about my health and alone because I can not feel my purpose.
No matter if I am being irrational...
No matter if I am repeating myself...
No matter if I have forgotten my worth once again...
No matter if I will be okay tomorrow...
You continue to support, comfort and lift me up. Thank you.
Most days, I love my life. On days like today when I can not feel that love, you hold it for me until I have the energy to vibrate again.
It took a village to save my life and now, some days, it can take a village to remind me of what I am here to do.
To those who lift me up when I am low, thank you.
To those who let me soar when it's time to fly, thank you.
For those who love me no matter what, thank you.
No matter how my life ebbs and flows, I am grateful for you.
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