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?

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.

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,

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.

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.

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.

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!