Practice

During one of my presentations on The Patient Perspective, a surgeon asked me how I thought it was that I was able to get to such a place of peace with illness and death. As much as I’d like to pronounce myself exceptionally deep or terribly smart, the honest answer is simple: practice. Since I was old enough to have even a minor grasp on my disease, I knew I was not going to live into my 80’s. Or 70’s. For that matter, living into my 40’s would be a gift. Carlos Castenada has a saying about living with “death on your shoulder”. I have lived that way for many, many years.

Besides facing the abstract possibility of dying young, I have had times of truly looking death in the eye. When I was around 10, I became so ill with pneumonia that my mother called the minister in to pray over me in case I wouldn’t make it. When I was in my early 20’s I was so sick that I was put on the lung transplant list and proceeded to deteriorate over the following 5 years of waiting for organs. The question of whether or not I would make it to transplant was never far from consciousness. In my late 20’s, I was once again diagnosed with a terminal illness, Chronic Rejection, and was told that a second lung transplant was not a possibility. I prepared to die without the possibility of any net to catch me. When things changed and I was put on the list again, there was certainly no guarantee that my body would hold out until another set became available. In all these ways and in all these different scenarios I have had the opportunity of practicing how I will die. If I were to assess myself, I would have to admit that the first few attempts to die well were not well done. I was riddled with fear. I was in a headlock with denial. I was immersed in self-pity. It was not until the third and most difficult time that I was able to move through the stages of grief and arrive in the beautiful place of acceptance and peace. It took practice.

Practice. Isn’t that the word doctors use to describe their job? They practice medicine. They have a practice. It dawned on me when I was answering that surgeon’s question that, more than any patient, they are the ones with all the practice in illness and death. They see it every day. They deliver the news that it is time to go wrap up life and prepare to say goodbye. They watch it unfold before their eyes in many different ways. They are often present at the moment someone dies.

Why then, do they lack the answers so many patients want to know? When I was diagnosed with Chronic Rejection I had one main question; “What do I do now? How shall I proceed from here?” The answers I got ranged from a confused shrug to “Well, you’re not on oxygen yet!” Of course doctors and nurses can not tell their patients how to live their lives. Of course they can’t give specific, concrete answers on the nest step to take. But I can’t help but to think that with all that experience, couldn’t they provide some guidance, a compass for which direction to begin the journey?

If I could go back in time and tell Tiffany Who Has Just Been Diagnosed With Chronic Rejection And Has No Hope Of A Second Lung Transplant where to go from here, I would tell her a few things. First, that she should enjoy the health she has now (I imagine that is what the nurse meant by exclaiming “Well, you’re not on oxygen yet”). I would tell her that she has some grieving to do, sadness and anger will be visiting. She will need to grieve the loss of her future and experience the pain of saying goodbye to those she loves so dearly. I would tell her to think about what is meaningful to her and highlight those parts of her life. If her job is important, keep that job until she can no longer physically do it. If her family is important, make time for them and focus on creating quality time with them as much as possible. If there is something “she always wanted to do”, now would be the time to do it, while her body is still able to get around. Finally, I would tell her that after the grieving is done, there is a possibility for great inner peace and acceptance of what life has offered. I would offer her information on programs, counselors and other people that might be helpful to her on this journey. I would tell her that I would answer any question she had about the physical process of her illness and death whenever she was ready or needed to hear it. I would promise to be honest with her at every turn, if that is what she wanted.

None of those things I have listed are rocket science. None of those things are terribly deep or complicated. None are too specific and at risk of misleading her into false fears or hopes. All of those things are simple truths that anyone who spends time with the sick would observe over and over.

This is where being a doctor or nurse becomes very tricky. If you, as a healthcare provider, are not willing or interested in exploring the emotional sides of illness, you will be unprepared to guide your patients in a time of need. If you are not willing to face your own mortality, you will be uncomfortable dealing with those who are. This is a tall order. This requires much more from a person than going to school and getting a degree. In my opinion, this is what is required.

No matter who that patient may be, no matter how “difficult” or independent, the chances are there will be a time when they look to their caregiver for guidance. After all, aren’t they the ones that do this every day? Aren’t they the one who diagnosed this new twist in my life? Aren’t they the ones that understand how this has worked for many others in the past? There is a tremendous opportunity for this caregiver to provide a patient with a confident first step into The Sick World.

From where I sit, doctors and nurses are in an enviable position. They get the honor and privilege of being present at some of the most transformative and pivotal moments in a human life. The question is, will the practice they get in these moments be something they choose to use or something they choose to deny?

Know Thyself! The Power of Strategic Living

This is a fast paced world we live in. It’s not uncommon for the modern individual to push themselves to pack more and more into one day. Go, go, go. We design a string of appointments, errands and work related tasks that are stacked so carefully, if one part of the string falls behind, we are behind on everything and under great stress to catch up. This kind of effort becomes normal and, if there is a lack of stress, it can feel as though we are not doing “enough”.

Just because a person gets sick, does not mean this go, go, go mentality suddenly stops. The body requires a slower pace but the mind may not recognize this. In order to enhance quality of life and reduce stress, this new mind/body dynamic must be approached consciously.

Example 1:

After 30-something years of grooming myself, dressing, having breakfast and starting my day, I had become comfortable with my routine and the time it took to do everything. When I was very ill, like a broken record, I couldn’t seem to get it through my head that things had changed and I became chronically late for everything. I hate to be late. At some point I had to face facts: now the simple things had become quite difficult and my daily routine had new elements that needed recognition.

Taking a shower was no longer an option because I couldn’t stand up in that kind of heat and still be able to breath. I had to switch to baths and baths, by nature, simply take longer. After my bath, I needed time to recover from that exertion. Usually I would spend around fifteen minutes either laying down or sitting at the edge of my bed. I needed this time to catch my breath and refill my energy’s “gas tank”. When you become ill, the body no longer has the same level of energy it once did. I could feel the energy being drained from me doing ordinary tasks. I called this energy reserve my gas tank and could clearly visualize when it was full (rarely!), when it was being drained (and by how much) and when it was empty (often!). Like the life regeneration you will find in a common video game, it takes time of stillness and quiet to refill the gas tank. It became essential for me to integrate these times of regeneration into my daily routine.

To dress myself, I had to split the task into parts. First, I opened the drawers to the dresser and then had to pause for breath. Bending down to open the drawers was an effort. After catching my breath, I would pull out the pants, underwear and shirt I wanted to put on. I would take them over to the bed and again pause to catch my breath. Sitting down, I would slowly dress myself, trying to be conscious about going slow. My mind would often forget the limits of my body and I would perform an action at “normal” speed and pay the consequences with a lengthy recovery. It was astounding how difficult it was to remember to go at my body’s pace, not my mind’s.

After I would complete dressing, I spent more time regenerating and gearing up to move back into the bathroom. In the bathroom, I faced some of my most difficult challenges. That is where I brushed my teeth and my hair. The raising of my arms for that length of time was very hard and caused me to get severely out of breath. There was a lot of time spent resting and catching my breath during those two tasks.

The next step required a long trip from the bathroom (located in my bedroom) to the kitchen. I had developed a mental map with different resting spots, I called them “stations”, along the way. Once I reached the kitchen, there was often a need for a long regeneration period at the kitchen table. This could take as long as a half hour. Once I had caught my breath and felt strong enough to stand, I made my way to the cabinet, pulled down a mug, filled it with water and put it in the microwave for 1.5 minutes. This time was another opportunity to sit down and rest. When the bell went off, I wasn’t always able to get up at that moment and would feel pressure to recover before my water got cold again. Sometimes, I wouldn’t make it in time and I would have to reheat the water and try again.

Once the water was hot, I put in a tea bag and made the decision of whether or not I had the breath to walk over to the trash can to dispose of the wrapper. Often, I left it on the counter, deciding it wasn’t worth the trip.

Next came the even longer trek to the living room, again taking time to pause at different resting stations. It was often a great effort to make it to the couch and when I did, it felt like a victory. I set my tea down on the coffee table in front of me and took all the time I needed to recover while watching morning television. By the time I had caught my breath, the tea had cooled down enough so I could drink it. This felt like an affirmation to the routine’s strategy.

When I had finished my tea and it was time to go out (usually to a doctor’s appointment) I gathered what energy had accumulated in my gas tank for the hardest task of all: filling my oxygen tank. At home I was hooked up to a compressor, a machine that took the oxygen out of the air and delivered it to me via nasal cannula but when I went out I had to carry a small refillable tank. The refilling was the hard part.

The large liquid oxygen tank was in the hallway outside the living room door. Next to it were the small tanks for filling. I had to get to the hallway, pick up a tank (not very heavy) and place it precisely right on the top of the big tank. Then, I had to lean with all of my might and weight (all 78 pounds!) so that the oxygen would pass from the big tank into the little one. This always left me panting and feeling weak in the knees. I took that opportunity to remove the compressor cannula and replace it with the portable tank cannula and crank up the oxygen level. Leaning on the tank, I took slow even breaths to regain my composure and begin the journey back to a place to sit down.

It is no wonder that I was late to things. With all of this extra effort and time needed to refill the gas tank (and oxygen tank!), I usually added an hour or two onto my “normal” regimen. It wasn’t until I got realistic about how long things took that I started making my appointments as late in the day as possible and planning appropriately so I had a chance of being on time. I became conscious of my limits and therefore was better able to strategically set out to accomplish my day with the least amount of stress and hurry.

Example 2:

Quality of life. This is a huge issue when you become ill. There is so much that you have to give up. There is so much that you miss out on. I found that sometimes, to fill my soul, I had to plan on overdoing and paying the consequences.

My favorite singer was coming to town and my mother arranged, through The Fairy Godmother Foundation, for a meeting before enjoying the concert. They also gave me and my companions a limo ride and a stop off for dinner at my favorite restaurant. This was a very special night. This was a night I would never forget and a night that I was way too sick to participate in without repercussions. There was no question in my mind that it was worth it however, so I began the plans to overdo.

The first step was to clear my schedule two days before and three days after. I made sure I had no doctor’s appointments and asked for help with meals and other daily necessities during that time. I rested and rested and rested before the concert. That night, my big oxygen tank was loaded into the limo and my friends and I set out for fun.

Dinner was wonderful. Meeting my favorite singer was awkward but sweet. The concert was just what the doctor ordered. I stood the entire two hours and sang as loud as my crappy lungs would allow, I knew every song. I was flooded with happiness and drank up every minute. When the lights went down and the concert was over, I felt like I had been hit by a truck. My friends helped me to the limo and as soon as I we got home, I crawled into bed with all of my clothes on. I stayed in bed for the entire next day. I did not bathe and I only partially removed what I had been wearing. I was exhausted and fulfilled. I was able to get out of bed the second day but still did not have the energy to bathe. By the third day, my tank had enough gas to wash up but I still needed naps and more rest.

I paid the consequences that I knew were likely to come from that one night out. It was worth every minute of my three day recovery. I had filled up with joy and had an experience that would always be close to my heart. Through the fatigue, I could still feel the pulse of the music and, there was no doubt, I had made a fair trade.

Example 3:

When I was healthy again and had my new set of lungs, I completely abandoned strategic living. Consequently, I found myself in undesirable situations. I was going to work all worn out. I was trying to write at times when I was at my least inspired. I was lacking balance and therefore neglecting parts of my life (like Jason) in pursuit of some lofty goal that, in the end, wasn’t really important. I had to start taking the lessons of my severe illness and applying them to my healthier life.

One night I was at a party with a bunch of old friends. I was visiting and had to leave the next morning for a long drive home. At home, I had a lot of errands and chores that needed to be done before that Monday in which I was scheduled to work an 11 hour shift.

The party, as so many parties do, started getting more interesting as the night wore on. I was getting to know new people, fascinating discussions were cropping up and those with a few too many drinks were becoming quite entertaining. I really wanted to stay and see how things played out but I had promised myself I would leave at midnight. When midnight arrived, I began to negotiate with myself the prospect of staying another hour or two. Immediately, I envisioned myself at work on Monday dragging and sick with fatigue. Even as healthy as I was, my gas tank still had its limits. I knew it was time to say goodbye and take care of myself.

Pulling my self away from the party was difficult. My friends teased me about leaving so early and tried to get me to stay. I stood strong, despite my inward protests, and left at 12:05 am. On the way back to my hotel, the fun of the party faded behind me and I could feel how tired I was. I looked forward to sleep and felt a sense of pride that I was able to override my immediate desires in favor of my future well-being.

The next morning, I awoke refreshed and went for the farewell breakfast. Some of my friends were still sleeping, most of them were hung over and all of them were tired. I was not standing in judgment of their choice to stay at the party, but was relieved to not be in the same situation. I found that the stories of the party were equally as fun as being there. As difficult as it was to extract myself the night before, I was glad I didn’t stay.

I drove home with a clear head and went to work on Monday with plenty of energy in the tank. I think of this trip often and try to hold onto the lessons I learned when I was so sick, the lessons about being conscious of one’s own limits and health strategies. I’ve learned that self care feels really good and is a strong component to self-love.

The Verdict:

The realities of illness can be difficult to accept and incorporate into one’s life. The fact is, however, the sooner you are able to adjust your daily expectations, the sooner you will be able to develop strategies that will help you move more efficiently throughout the day. To do this, you must know yourself, your limits and your needs. Nobody will create a system for you that will maximize your energy and schedule; this is up to you. Nothing is more frustrating than trying to accomplish what you did when you were healthy in the same way now that you are sick. Likewise, the lessons of conscious living and strategizing can be very satisfying when you are of sound body. The bottom line is to know yourself and love yourself enough to think ahead so that you might live life with as much energy in that tank as possible, and with the highest capacity for joy.

On Being Judgmental

Journal from July 6^th 2003

I’ve been noticing lately how much I really enjoy judging people in my head. If I can find a way to make their behavior seem illogical or reckless, I can delight in climbing up on my high horse and pronouncing them less than I. It makes me feel powerful. I know that it’s wrong. I know that it’s something I should stop doing but the truth is, I don’t want to stop.

I’ve had a few instances recently that gave me some new insights into the root of my judgmental behavior.

At dinner the other night, Steve was talking about a cough he had been dealing with for the past week or so. I became angry and scolded him for not going to the doctor. I spoke to him sarcastically and attempted to shame him for being irresponsible with his health. Steve doesn’t respond to this kind of outburst and my attitude was dismissed, next topic.

Later, I felt embarrassed by my behavior. Why had I reacted so strongly to reports of a simple cough? At first, I assumed it was a reaction born out of self-pity. How could he so casually ignore a cough when lung problems had been my greatest downfall? Why did he get to be so leisurely about it when I had to take it so seriously?

While I’m sure there were elements of truth to that theory, it did not ring true, as a whole. I dove a little deeper into the subtext of the exchange and uncovered my underlying emotions were not anger or self-pity; they were fear and worry.

Years ago, when I was in ICU following my first lung transplant, Steve was very ill at home with pneumonia. It had started with a cough that he did not address and the consequence was a yucky bout of pneumonia. My anger and sarcasm were a manifestation of my fear that he would, once again, neglect himself and wind up very sick.

So why the anger? Why did that emerge instead of the love that provided a foundation for my worry? Why would I choose, consciously or unconsciously, to address him in that way instead of with kindness? The answer: vulnerability.

Kindness makes me feel vulnerable, judgment makes me feel strong. Clearly, these feelings do not benefit anyone and are simply counter-productive. Kindness or concern would have gone over much better than misplaced anger and criticism. Perhaps that same exchange delivered with heartfelt concern would have brought us closer together. Instead the opposite was true.

I have taken this realization and attempted to apply it to my life. The results have been interesting.

I was getting frustrated with David the other day. Out of all of the people in my life, he was the only one that had not made a “happy painting” for our kitchen wall. He had promised to do one over and over but never delivered. I just didn’t understand what the problem was. I began to pester him about this, again, and his reaction was to get defensive. I stopped myself in mid-sentence and decided to try and tap into the deeper reason behind my irritation. Once I took a moment to do this, I was able to see that my reasons for wanting him to create a painting reflected my desire for him to let go of his chronic fear of failure. I knew that David was putting off the painting, not because he didn’t want to do one, but because of his overwhelming fear that the painting wouldn’t be good enough, deep enough, clever enough. This precise fear held him back from many other life experiences. He had a history of quitting before he began.

From where I was sitting, in the land of carpe diem, this kind of resistance to life’s new territories was tragic. I wanted so badly for him to break through that mentality and my conscious manifestation of that desire was to judge him for his perceived cowardice. When I was able to get in touch with this deeper emotion as well as the shallowness of my judgement, I stopped my ranting. Instead, I sat down next to him, looked him in the eye and told him the truth from my heart. I told him that I wanted him to do this painting because he was such an important person in my life. The wall would simply not be complete without his contribution. I told him I didn’t care if the painting was a Mona Lisa or pure nonsense, I just wanted him to have the experience of paint on canvas. I told him that I loved him and wanted him to feel safe to try something new.

Honesty poured from me this made both of us well up with tears. It was a kind of shift in a moment that I had never experienced before. It was beautiful, real and freeing.

David never made a painting but I never brought it up again. It no longer bothered me and I certainly felt no need to nag him about it. I had spoken my hopes and the rest was up to him. I was fine with whatever he chose and had no judgments.

There is something easy and satisfying about judging and gossiping. (If there weren’t so many of us wouldn’t be reading celebrity magazines!) I can’t pretend that these discoveries have transformed me to a place of non-judgmental nirvana. The difference is that I now know when I am doing it and that a much more satisfying alternative exists. It is in my hands to stop taking the easy way out and do a little extra work in order to find a much kinder and more rewarding way to engage those I love.

Outty...Again

Once again, I will be away from my computer for a few days...I'm off to the wild, wild Midwest for my cousin's wedding. I'll be back online Tuesday.
Have a great Memorial Day!

Truthfully Yours

Dear Dr. Batistte,

I heard you talking about me in clinic today. You forgot to shut the door all the way. I wasn’t surprised by what I heard, really. I could tell by the look in your eyes that you didn’t like coming in my room. I guess I thought you just didn’t like your job, but now I know, you just don’t like me. I wish that didn’t bother me, but it does.

Do you understand that what you see when you enter my exam room is merely a snapshot of my life? Sure, you see a frail girl on oxygen who is angry and bitter. Do you think that is who I am? I suppose you do. What else would you think of me since that is all you know?

I am angry and bitter. I am angry that I am dying and yet I still have to come to clinic every month. You have told me that there is nothing you can do for me so why do you make me haul me and my oxygen tank all the way from my home to the hospital anyway? Is it so you can keep up with my statistics? Well, I stopped caring about my statistics months ago. I wish you would just leave me alone and let me be in peace.

Instead, I follow your orders like a sheep and show up here every month, tired and irritable. I heard you call me “difficult”. I know you have written me off as a problem patient. I would guess that you have even labeled me the biggest label of all : non-compliant. Is your perception that limited? Your compassion so shallow?

Perhaps I am a problem patient. If you’d like to call me that, I won’t dispute you. Where I have a problem is when that becomes the beginning and the end of my definition.

I am a problem patient and I am a survivor.

I am deep and I am materialistic.

I am fun and I am too serious.

I am compassionate and I am judgmental.

I am fulfilled and I am empty.

I am surrounded by loved ones and I am lonely.

I am everyone and only myself.

I am just like you and nothing like you.

I am sorry that I have made your work day a little harder, a little longer. I am trying to live with terminal illness and you are trying to get to lunch. Our agendas are so different.

You have hurt me today with your overly simplistic label of my state of mind. The problem is, your label is seen as a scientific fact. I mean, it went in my chart, didn’t it? That makes it real and concrete.

I heard you behind that crack in the door say that there was nothing you can do for me. I heard you describe how difficult I am and that makes it impossible to work with me. I wish you knew how wrong you are. We wanted different things from each other, you and I. You wanted a smile, perhaps? A warm welcome? I wanted understanding. Today, neither of us got what we wanted but it didn’t have to be that way. I wish I had never heard you behind that door.

I am angry with you. I don’t have much warmth in my heart for you. The only kind thing I can say today is that I hope you never have to face the same kind of one-dimensional assessment you have placed on me. It is true that there is little in this world that hurts me more than being so misunderstood.

Truthfully Yours,

Tiffany

Shrink Talk

A few people have asked how my talk went yesterday. It was fun fun fun. Anybody out there need a speaker? I'm cheap and have a flexible schedule! :)

I love sharing my story and am continually amazed at how much people are affected by it. Before every talk, I am filled with nerves and doubt. I convince myself that I am silly to do talks...what do I have to say that could possibly be of interest to anyone else? After the talk, however, I am filled with confidence and ready for more. My confidence dissipates in a few hours, though, and by my next talk I am back to thinking I have nothing worth listening to. I have learned now to accept this doubt as part of my process. It shows up every time.

One of the best parts about doing my talks, at this moment in time, is the feedback. Every time I walk away, I am able to think of more things I need to put in my book. Yesterday was no exception. The shrinks had so many interesting comments that I have thought of several more chapters that need to be written. Every time I think I'm nearly done with this thing, I create another 5 chapters that need done. Last week I had about 7 more to go. This week, I have 17. I'll never finish at this rate! :)


Thanks for all of your support!

Pockets of Grief

Often, when someone is in the middle of a trauma, be it illness or otherwise, there is not enough time, energy or perspective to process the relative emotions. For the sake of survival and sanity, they are pushed down, at least to some degree, and not addressed. Where do those emotions go? I think most people assume they simply dissipate, like smoke into the air. In fact, emotions are energy and, as the first law of thermodynamics tells us, energy can not be created or destroyed. So what happens when we are unable to feel our feelings? In my experience, they wait until we have an opportunity to do so to pop up, often at very unexpected moments.

Experience 1:

A year after my second transplant, I was taking a class that a friend was teaching. It was a group of spiritually minded individuals who met once a week to learn about different spiritual principles and practices. One evening, my friend started talking about the Buddhist practice of Ton Glen. This was a meditation I used on nearly a daily basis when I was at my most ill and in a great amount of discomfort or pain. She told the class that it was a meditation to increase compassion for other people and gave the details on how to practice it. In time, my Ton Glen meditation had transformed a little from the way I had been taught to a more customized version. I raised my hand and began to tell the group about the way I visualized and used this practice. (As a side-note, I have put the meditation at the bottom of this chapter.)

When I began speaking, I was not filled with emotion other than the fact that I was excited to tell the group about my experience. A few sentences into my explanation, however, it was as though I had been hit by a bolt of emotional lightening. Suddenly, I was there, in all of the moments of suffering in which I used Ton Glen. I was in all of the moments simultaneously and the emotion was overwhelming. I began to cry and was aware that my tears would seem out of place with what I was saying. I felt self-conscious and willed for the tears to stop. They did no such thing. The emotion continued to build until I was sobbing and unable to catch my breath. I was confused by my own feelings and apologized for the mysterious outburst. No matter how hard I tried, I could not hold back this flood. I eventually had to stop telling my story altogether and continued to weep for another few hours. It was the next day before I was able to understand what had happened. I had stumbled into a pocket of unexpressed grief.

Experience 2:

In 2007, I was invited to my class’ 10 year college reunion. It was a weekend consisting of many events. The first was a Q and A with the current students in which my class of 30 answered to what they have been doing since graduation. Following that were events in which we mingled with the faculty in various venues and over different themed buffets. The culmination was a big party at one of the graduate’s homes in which everyone and anyone was invited to attend.

While it was wonderful to see old friends, I spent the weekend feeling as though I was on the verge of tears. In everything I did, I was riding a wave of subtle sadness that I couldn’t shake. As I sat and watched those around me, I felt such envy. As I talked with old professors I felt a sense of unworthiness and shame. I had not graduated from this school. I had to leave in my third year because my health was too poor to continue. I was placed on the lung transplant list the summer after my second year and never returned to finish my degree. I envied those framed diplomas on the wall in the homes of those around me. I felt embarrassed to be the student in the room who only finished two years. I wondered if the teachers even remembered who I was.

At the final party, I fell into a pocket of grief. All the memories and all the nostalgia swarmed around me. It was intoxicating and reminded me of how passionate I was about school back then. It reminded me of the girl who wanted nothing more than to finish this acting conservatory and live the dream of being a working actor. I was hit with the sorrow that came with having to drop out and leave this dream behind. I felt such sadness for the girl who, once again, had to give up something she loved because of her illness.

I cried for that girl all the way home.

The Verdict:

Pockets of Grief may appear when you least expect it. Often, it takes time to understand what is going on and where the emotion is coming from. Because it is emotion from the past, it can feel disjointed and unspecific. The ambiguity of this kind of emotion can make it especially confusing.

I have cried for the girl that did Ton Glen every day. I have cried for the girl that had to walk away from her passions and her dreams. I have cried for her today because I can. I now have the breath and the strength to sob for her losses. I can do today what she was unable to do so long ago. The energy of these emotions have lived within me for all of these years and now, through my tears, the grief may be transformed.

My Version of Ton Glen:

Close your eyes and get as comfortable as you can.
Take 3 slow breaths.
With each breath, relax more and more.
Look within yourself and discover the place where you feel the most pain.
Picture yourself standing next to your pain. The pain may be a specific object or a blob of energy.
Pick up your pain and hold it in your hands.
Now imagine walking to a bank. Enter the bank and go up to a teller.
Hand the pain to the teller and inform him/her that you would like to make a deposit into the account where pain is kept.
Let the teller take the pain out of your hands.
Say to her and yourself; "I offer this pain to all who are suffering with the same kind of pain, now or anytime in the future. May they suffer less because I suffered consciously today."
Now picture a person, it's probably not a person you know, suffering with the same kind of pain you are experiencing.
Picture them coming to that bank and making a withdrawal from that account.
Picture them being soothed and their pain lessening.
They suffered less because you suffered consciously today.
Repeat: "I offer this pain to all who are suffering with the same kind of pain, now or anytime in the future. May they suffer less because I suffered consciously today."

This meditation was helpful to me on two levels. First, it allowed me to feel like I was contributing to the world even at a time when I was unable to get off of the couch. Second, every time I did this meditation, my physical symptoms were lessened. I found great comfort in this exercise.

Talk for Psychiartry Residents

Sorry I haven't made any posts lately. I've been working a lot and pretty tired. I hope to get back in the swing in the next few days...I have lots of things I'm anxious to write about.

Today, I have been working on a talk I am giving tomorrow. One of my favorite things in the world is to talk to Med Students, Residents and Attendings about the Patient Perspective. This is my first time talking to Shrinks. I'm excited! Here's my talk and please forgive the fact that it's not polished. I ad lib so the talks aren't written to perfection.

It's my hope and plan to give many, many more of these talks in the future...

My name is Tiffany Christensen and I was born with Cystic Fibrosis. I have had two double lung transplants, one in 2000 and the second in 2004.

I am 33 years old and I have planned my own funeral…twice.

I have sat down with the people that I love and told them that I only have 6 months to live.

I have held my mother’s hand as she cried and said she didn’t know how she would live without me.

I have had more days in the hospital than I could possibly ever recall.

I have scars all over my arms from the countless IVs, scars on my torso from chest tubes and scars from the clamshell incisions that were made when I had my double lung transplant.

Before my first transplant, my lung function was 18% of capacity. Before my second transplant, my lung function was 10% of capacity.

Translated, that means I got severely out of breath brushing my teeth.

I have lived with chronic illness, acute illness, sudden onset illness and terminal illness.

I am honored to be here today to talk about my illness journey.

The first thing I’d like to talk about is what I call the “Illness Identity Crisis”. To illustrate this, I’d like to ask you to get the pen and note card at you seat and write down as many words as you can think of that describe you. “Self Labels” if you will. No one will see it so be as honest as you want to be. I’ll give you about 30 seconds….

OK. Now. The first thing I’d like you to do is cross off anything that pertains to your career. That’s usually one of the first things to go when you get sick.

Now cross off anything that has to do with how you look…that changed pretty dramatically.

Now activities, hobbies. Not many of those are sustainable during serious illness.

OK, you don’t need to tell me what you have one there, but how many people have more than 3 things left on the list?

Alright. Interesting.

The next one might surprise you. Personality traits. I was surprised to find out that the things I thought were my personality were not fixed or permanent…they changed very much the sicker I got.

Now, cross off relationships. Not because you will loose many, although it’s likely you’d loose some, but because they have to be restructured. If you’re a Mom and you’re sick, you will have to completely redefine your role and what Mom means. The same goes for friend, wife etc.

OK, again, how many people have 2 or more things left on the list? Interesting.

Finally, cross off anything to do with faith in God. I’m not saying you will loose your faith in God. (although some people certainly do) I am saying that you will definately be exploring new spiritual territory and, let’s just say, you and God will probably need to stop being so polite!

OK, now, final count…how many people have more than 1-2 things left? (Not many…no one…you do? I would love to talk to you afterwards etc)

So after doing this, can you see why crossing off all of these things from your life could make a person feel lost, like you don’t know who you are and you really never did? What you have discovered is that not much about how we see ourselves and our lives is permanent. Who am I if I’m not a Doctor, Nurse, funny person, reliable person, person with unwavering faith…the list goes on and on. It can be scary, sad and confusing.

It’s like the peeling of an onion. One by one, the layers of our life unravel and we have to give something up. It may start by quitting a job and then it may be giving up a hobby and eventually, it may be giving up our independence.

What is wonderful to know is that after all those layers are gone, you are left with only the core. The sicker I got, the more I could actually feel the separation between my body and my mind or spirit.

My core was never sick or tired or even scared. I found out that my core is an indescribable, un-namable part of my being with no adjectives or duties associated with it. This is one of the greatest opportunities of illness…to transform the Illness Identity Crisis into the deepest knowledge of oneself. Inner Peace.

So, how can you, as caregivers help someone suffering from the “Illness Identity Crisis” reach that place of peace?

When you loose so many of the things that once gave you purpose or made you feel valuable, sometimes all you need is for someone to recognize that you still have things to contribute to the world.

Support them in feeling valuable by engaging them in conversations about things they have interest or knowledge.

Express the impact you see them having on you and others now.

Encourage them to plan an event or some other project that would be physically possible that will engage their mind and creativity and will serve a purpose. As an example, I planned my mother’s 65^th birthday and enlisted the able bodied to do the labor while I created the feel and schedule and games. It was fun for me and also gave me sense of great purpose because it allowed me to do something nice for a person I love.

Let’s move on to another challenge I found during my illness journey. That is the issue of empowerment. To be dependent on those around you and to not be able to do “normal” and mundane tasks can really affect one’s pride and make a person feel so vulnerable.

Those feelings of vulnerability can often manifest as feelings of anger, fear or sadness.

I know for me, being physically poked and prodded made me feel especially vulnerable. I often felt embarrassed and ashamed. It’s hard to articulate exactly why, but it has something to do with feeling like as an adult trapped in the body of a helpless child.

I wanted so much for the people caring for me to see that I was an individual with something to offer…not just this broken down rickety old body! This attitude made me depressed at times, angry with the people caring for me and feeling like I was just a big pin cushion for the world to use at their discretion. I felt out of control.

As a sick person, you can feel like you spend your life at the mercy of others…waiting for them to bring you food, medicine, oxygen. Being pushed in a wheelchair at a speed and route not determined by you. Being sick can feel like being out of control.

I found that, while physical vulnerability was a big part of my challenge in my illness career, so was emotional vulnerability. Sometimes, my frustrations came from not being able to express my internal thoughts and feelings. Not because I wasn’t able to articulate them, but because my body simply didn’t allow it!

Laughing, crying, talking and getting excited were things that I had to learn to stifle and control. I simply didn’t have the energy or the breath. Sometimes, I wanted to shout “Please remember, I’m still in here!”.

Again, it was a feeling of being trapped because my internal reality didn’t match my external reality. I still had the same need to express opinions, ideas and jokes, I just couldn’t always get it out or simply didn’t even expend the effort to try. With some people, I was able to develop alternative ways of communication, but I still felt left out of many conversations.

What can you do?

Help family members understand that the person they love is still in that body somewhere, they just can’t express themselves the way they used to.

Helping people find new ways of communication and different ways of occupying their minds can be helpful.

Journaling is good because it takes much less effort than speaking.

Art was something I used, and the possibilities with that are nearly endless.

I found great satisfaction in listening to lectures, as it enabled me to occupy my mind with new ideas. I was able to engage myself on a deeper internal level than would naturally appear in my mundane world.

Mostly, the nicest thing you can do is remember that the outer wrapper doesn’t always, and probably rarely does, reflect the internal life within us.

I think the best way to empower patients, is to honor them where they are. I found that I often felt burdened by “Well World Expectations”. I was dying and it wasn’t a secret, but not many people wanted to talk about it. I found myself protecting my friends and family from my reality.

One thing that I found very empowering was planning my own funeral. Helping someone hash out the details for their farewell party can be such a gift.

Also, I no longer was able to be the problem solver and free counselor that I once was. I think it is very difficult for people to let these roles change or end. Helping a patient establish new boundaries within old relationships can be of tremendous relief.

You may have noticed, I have used the word “trapped” today several times. I often did feel like I was trapped inside this body. Many people pray for and some experience miracles of unexplainable recovery from illness.

What I learned is that there is another kind of miracle that is not nearly so dramatic. That is the miracle of learning to love life despite serious disability or terminal illness.

I may have been trapped in a body that wasn’t going to be cured by a miracle, but it was up to me to decide if I wanted to stay trapped in my self made prison or to escape the bars through self love and by learning the lessons this broken down old body had to teach me.

In time, I learned that the illness wasn’t my choice but whether or not to suffer was.

Today, I am still winding the layers of my onion back around the core. I have a job at a vet hospital, I volunteer for human hospice and am working to give more and more of these talks. I have my new husband and two very demanding 4-legged children to attend to. I am back in the world with full force, determined to make a difference.

However, I often find that the more layers I put back on my onion, the farther I find myself from that core. It’s my challenge now to only focus on important layers, like this talk, that enables me to honor and remember what I know.

I am so happy I got to be here to talk with you all today. Thank you for letting me be here.

Anatomy of a Migraine

May 18, 2007

I woke up yesterday with a migraine. I am familiar with the feeling and knew right away what to do. I took nausea and headache medicine and sat very still, hoping it would pass on by. This was my first migraine after having gotten a stomach surgery that prevents me from actually being able to vomit. I was dreading this day because I didn’t know how things would go considering my average migraine causes me to throw up 5-15 times. I hoped I had caught it in time but I didn’t.

I began to retch and sweat profusely. My heart pounded in my ears. After what seemed like days, the retching subsided and I began the evaluation process. Do I need to go to the hospital? Should I call Jason at work and ask him to come home? If I am patient will it subside? Should I call work and tell them I won’t be in today even though my shift doesn’t start for hours?

I made a deal with myself. I decided to wait and see if I had another bout of nausea and retching and, if so, I would call Jason and ask him to come home. Minutes later I went through another round and called Jason immediately after. As soon as I hung up the phone I was met with guilt and doubt. Was this bad enough that I needed to ask him to leave his job and come home? Should I have waited longer to see if I could get by on my own? What could he do for me anyway? Was I being a baby calling him?

Jason got home minutes later, just in time for another round of retching. We couldn’t communicate at that point and I was unable to fill him in on what was going on and what medications I had taken. He sat with me and waited for it to be over. Once again, I was hot and sweaty and he got me a cold rag for my head. He rubbed my neck and kept the dogs away from my face. He called my work and told them I would not be in that day. I felt very weak and light headed so I asked him to help me to the bathroom. I was so unsteady on my feet I doubt I could have made it on my own. Perhaps because I was unable to have the relief that comes with vomiting, my body started to shake uncontrollably. Jason helped me lie down and covered me with many blankets. He then took out my dog who had been asking me to go out prior to his arrival home. When he was gone I began to think I needed to go to the hospital. I craved the IV medications that would take away my nausea and my head pain. I decided to wait it out a little longer.

When Jason came inside, I felt so safe knowing he was there to take care of me that I fell asleep. My body was exhausted. I woke up a few more times to retch and was relieved to have Jason there to hold my hand and wipe my brow. Eventually, I slept without the need to wake up and retch. The worst of it had passed and all that was left was a headache. I knew that I couldn’t move around much or the migraine might regain its strength. Jason got me some applesauce and water. I was ok and he could return to work.

Before he left, I thanked him for coming home. He said that he didn’t feel like he did anything to help me. I imagine from his perspective his actions were small. Getting a cold cloth and shooing away the dogs probably doesn’t feel like the work of a hero. But it is. His presence made me feel secure in knowing that if things got worse he could take me to the ER. Taking out my whining dog was something I could not have done and, had I tried, would have certainly caused another round of retching. Wiping my brow was incredibly soothing when I felt as through I was on fire. Holding his hand made me feel loved and reminded me that I was human, not just a ball of pain and misery. He took hours away from work and contributed so much in my moment of need. I could never explain how incorrect he was when he said that “he didn’t do anything”.

Anyone who sits with a person in a time like this one, a time of incredible discomfort, is a hero in my eyes. Whether you are a parent, a spouse or a nurse, you will never be more needed in your life. While you may not be scaling a burning building, your energies will never be more appreciated. Thank you, Jason, for being there for me yesterday. Thank you, Mom and Dad, for being there many migraines before I met Jason. Thank you to all the heroes out there that sit by and wipe the forehead of someone they love with a cold cloth.

Still Not Dead (A New Introduction)

There are lots of reasons that I “should” be dead by now. I was born with Cystic Fibrosis, a genetic illness that affects the lungs and digestion. In 1973, the year I came into this body, the life expectancy for a person with CF was around eight. As medicine advanced, I seemed to stay right behind that number. When I was eight, the number was 12. When I was 12, the number was 21, and so on. I had countless bouts of pneumonia and bronchitis growing up. A few times I was so sick, my mother had a minister in to bless me in case I died. I managed to graduate high school, in between trips to the hospital, and go on to college. Unfortunately, my health ran out before I could graduate. I was so chronically ill that I was getting powerful intravenous antibiotics every few weeks, for weeks at a time. If you do the math, that means I was hardly ever not getting IV medication. After I left college, the doctors put me on the lung transplant list. My health was failing and that was my only hope.

I waited five years for my first transplant. I got sicker and sicker. I had to carry oxygen with me 24 hours a day. I couldn’t work and needed plenty of help to manage average tasks. I was dying.

On April 4^th, 2000 I got the call that they might have lungs for me. My family and I drove to the hospital, both excited and terrified. There was the excitement that I may live a life in which breathing came easily. There was the fear that the surgery would be too much for my body and I would never make it home again. In my heart, I believed that I would make it through the surgery and do well.

I spent a month in the hospital with various complications. My recovery was slow and difficult. Once I was able to run around, I didn’t want to stop. I encountered life with a ravenous appetite. My hunger was so disorienting, it was impossible for me to pick a direction or path. I went all over the map for months until, like hitting a brick wall, a medicine-induced depression hit me. I spent the next eight months in a deep hole, wondering what the point was to my survival. Eventually, I emerged but still had no better compass for what I should do with my life.

Ultimately, I chose to go back to school. I was enjoying it until, 2 years and 2 months after my transplant, I was given horrible news. I had Chronic Rejection, a puzzling and devastating illness with very few treatment possibilities. My lung function took a steady dive downwards and never really stopped dropping. I had to quit school again and reorganize my life for this new and uninvited guest. After a year, I was back on oxygen and very enfeebled. I was dying again but this time, there was no hope of a transplant. I asked the team if they would consider giving me another one but they declined, saying it was too risky and rarely successful. My options had run out and I had to say goodbye.

I rode the roller coaster of emotions, all of the ones outlined by Kubler-Ross, over and over again. Grief is not a linear process and I experienced denial, anger, sadness, bargaining and acceptance in many different shapes and forms. I did eventually land in the soft bed of acceptance. I had faced my mortality, grieved the losses and found beauty in my terminal illness. I was truly at peace.

That peace was unexpectedly interrupted by my earth angel, the new transplant coordinator. When she heard that I had expressed an interest in a second transplant, she went into action. Something in her was motivated to give me that chance. She wanted to put me on the list again.

My initial reaction was not one of joy. I don’t have a succinct word for how I felt. It was a jumble of anger, hope and dread with a large dose of confusion. I had made peace with my fate and now I had to consider the possibility of living? This seemed far more difficult than simply accepting death. I didn’t know what to hope for anymore! My lesson was a deep one about being okay with either outcome. If I lived or died, I would be equally pleased.

I did get another transplant. I marvel at the fact that I am still not dead! All of the procedures, medicines and surgeries my body has endured is mind-boggling. As a person who has lived with acute illness, chronic illness, sudden onset illness and terminal illness, I feel I have a unique resume relating to patient advocacy and illness psychology. I was inspired to write this book after a conversation with a friend of my husband’s who came to visit one summer. Her father had just had a stroke and was in the hospital. She told stories of great fear and sadness because she was so lost in the medical maze while desperately trying to take good care of her dad. I was overwhelmed with the desire to give her all the tips and tricks I had stumbled upon during my personal journey. For patients and families, the world of medicine can be disorienting and difficult. It’s my hope that the practical parts of my book will help those in the system navigate more effectively and with more confidence. I have “been there, done that” and I hope that my lifetime of experience can serve to help others bypass painful obstacles that I had to learn about the hard way.

This is not a book about transplant or Cystic Fibrosis. In giving talks and creating this book, I have had the opportunity to interact with many patients with a wide variety of diagnoses. While we may have been on different medications, had different surgeries or experienced different symptoms, the emotional, spiritual and psychological effects were often nearly identical.

Most of us will become ill at some point in our lifetime. Many of us will find ourselves in the medical system, either as a patient or caregiver. One of the most helpful things for someone to know in those situations is that they are not alone.

As one aspect of this book, I have taken my personal journals off of the shelf, dusted them off and transcribed them. Despite how vulnerable this makes me, I feel it is important to open the door into the private thoughts and emotions of a person facing illness. I offer my journals as an affirmation; there will be times of sorrow and times of joy in everyone’s path and both of those are okay, even “normal”. I imagine many who read my emotional confessions will see themselves in the writing. We are all human and we should not have to feel our way through illness alone.

Another aspect of this book is my ponderings related to the spiritual side of illness. I speak of God and other “religious” references. I struggled with my decision to include these parts of my life as, these days, it is so easy to turn people away with a religious reference that is not in sync with their own. In the end, I could not leave out my relationship with The Divine as it was a huge part of my experience. I have found great inspiration and clarity from many different religions and ultimately found that one’s intention is what is most important. It is my hope that my choice of language about spiritual topics will not be a distraction from the intention and lesson behind it.

I offer this book to patients, families and medical professionals. It is part hand-book, part memoir and part confessional. I hope I have succeeded in providing a window into the quiet and often overlooked world of a person facing serious illness. I hope others will benefit from my mistakes. I would be thrilled to have others be inspired by my victories.

I have much to share and still much to learn. By the grace of God and many beloved people, I am Still Not Dead.

The Creativity River

Well, it's getting down to the wire. I have 5-8 more chapters that are in the cooker, ready to be written. I have pages of journal entries that need to be transcribed. I have plenty of content editing to do. I have to decide on a name. All in all, that's not much.
In the last week or so I have had the disconcerting feeling of not being focused on finishing these things. I have been coaching myself and pushing myself to write what needs to be written. It just hasn't been coming.
I am relieved today because I had a realization. Creativity is a funny animal. It shifts and flows in ways that are mysterious to even those infected by it. My creativity has recently shifted and my thoughts and musings have revolved more around the practical nature of this being, my book. I want to get it organized. I want to find its format. I'd love for it to have a name. These are the things my mind and heart are pondering. I was worried about that until I realized this is simply where the creative river has taken me. It is perfectly perfect.
I will finish the chapters. I will transcribe the journals. I will also be spending time sorting through what is already been done to find the shape of this book. I may not be posting every day, as I have done over the last few months. I'm working it out. Wish me luck and the power of the muse!

God is Not a Magician

April 3, 2001

It has suddenly occurred to me that “God” is not the God I imagined as a child and have deeply embedded in my subconscious. God is not the controlling miracle worker. God can not make me go to sleep when I am not tired. God can not heal my lungs when they are sick. God can not create money for me when I am poor. God does not do magic tricks.

God is merely and profoundly my guide. God wills me to relax my thoughts so that I might go to sleep. God guides me to good doctors, and away from bad ones, so that I might be educated on a healthy way of life and given good medicine. God leads me to people who can give me a job so that I can make the money I need. God does not do magic tricks. God simply leads me and I have the choice of whether or not to listen.

It is up to me whether or not I let my mind calm down, take the doctor’s advice or accept the job that will provide some money. I am ultimately the one who makes the choice to sleep, be healthy or healthier, and to have money.

I was raised believing God could do anything and now I know he can not do anything without my cooperation. Cooperation comes in the form of integrity and openness. If I am without integrity, I will make the negative choice. If I am not open, I can not be guided by the spirits’ gentle whispers.

I must stop sleeping through life. I must start taking more time to allow the opportunity for spirit to speak to me. I must give my own spirit the respect it deserves for being responsible for ending up where I am. I must accept that responsibility for every shape, every nuance of my life. I must listen at every step. God is not a magician and if I fall out of the boat, he can not wave his wand and zap me back in.

Brave

November 28, 1999

My grandmother calls me “the brave one”. That word seems to be applied to me a lot these days. At first I found it to be a nice compliment. Now, it makes me so angry.

I am not brave. I cry and fall apart, I just don’t often do it in front of you. What would it look like to you if I were not “brave”? Would I sit in the corner of the room rocking back and forth? Would I stop speaking? Would I just die?

I don’t know how to be anything other than what I am. I put one foot in front of the other, every day. Sometimes my steps are steady and other times I fall into a pothole of darkness. I get scared. I get sad. I worry. I am not brave. I am just getting through it.

Sometimes I think they call me brave because it takes the pressure off of them. If I am brave then I am ok, taking care of myself, not needing support. If I am brave, they do not need to find a way to give me strength. If I am brave they can walk away without guilt.

Example

Here is an example of how the format would change. I recently did a post called "When Beliefs Collide". I have edited it to make it a diary entry, as if it were written the day it happened. Do you like that better than the original or no?

When Beliefs Collide

September 16, 2003

Ever since I told the family that I only have 6 months to live, Mom and Dad have been agitated about my spiritual path. They raised all of us Christian, but to my parents’ dismay, not all of their children fell in line with their belief system. While I have a deep spirituality, it does not follow all of what the Bible talks about. For example, I believe in Jesus but I don’t believe in a literal, eternal hell. My parents, however, follow the word closely and hell is a reality for them. It’s for this reason that my terminal illness, coupled with my beliefs, is extremely distressing for them. They fear that once I leave this earth, we may end up in different eternal residences and, therefore, they may never see me again.

This issue is very painful for them and has been brought up in different ways throughout my life and my illnesses. Lately, the topic has been brought up quite frequently and with urgency. Sometimes I feel compassion for their heartache and sometimes it makes me very angry. I have even contemplated lying to them and saying that I had done all of the things they asked me to do, just so they could have some peace. Ultimately, I have been pushed to a point of such frustration that I decided I needed to confront them about this issue. My plan was to lay down strict boundaries and declare the topic of religion off limits. I would tell them in no uncertain terms that their feelings were their problem and they should leave me out of their religious quandaries. Luckily, before I had this bitter conversation, I decided to pray about it first.

My father was on his way over to spend some time with me this afternoon. Before he got here I went into my room and laid down on the bed. I relaxed myself and got very quiet. I started to journey inside myself to the other plane where my “spirit guides” await my visits. The irony doesn’t escape me that my most trusted spirit guide is Jesus. I feel very close to him individually, just not the religion of Christianity. This distinction may seem strange to some people, certainly that is so for my family, but nonetheless is where I am coming from. I sat down to pray to Jesus about this problem and was flooded with answers. In fact, he gave me a list of things to tell my parents and I have included some of those here.

I asked the question “Jesus, how do I talk to my Dad about my beliefs”. These are the things he told me. They simply popped into my head as a conscious thought and I wrote them down.

1. Tell him that he is confusing religion with rules. Religion is not rules, it is love.
2. Tell him that you are my child and I love you. Ask him how in the world he thinks I would ever let anything bad happen to my child?
3. Tell him that everything you have done, you have done to find love. Love of yourself, other people and love of the universe. If Buddhism and other traditions help you learn more about love, then they are a good thing.
4. Tell him how you always turn to me first with your big problems.
5. Tell him that when you say you love me, you mean it, not only as a practitioner, but as someone who knows me personally.
6. Tell him to lay his burden down.
7. Tell him that he will never know how much I love you but that is all that really matters.

Let him think on these things. Arguments are not necessary.

Arguments were not necessary. When my father arrived, I read these things to my father and he cried. He told me that he felt sure now that I would be ok. He was able to lift his fears and sadness and embrace the concept that, despite my “non-traditional” route, I had found my way to heaven. I was blown away by his reaction. I never expected that kind of understanding. It was clear that my talk with Jesus was a glorious example of "taking the high road". This experience will forever change the way I look at conflict.

My parents and I will always come from a very different perspective on religion. What this taught me was that when religions collide, there are two ways one can handle the situation. One can fight back with the force of the ego and claim “rightness” or one can dig deeper and find the spiritual thread that connects most world religions; love and compassion. I could have gotten indignant and told my parents to back off. Perhaps that would have been acceptable, reasonable. But would it have been helpful and healing? Certainly not.

By listening to the Divine Voice inside me, I was able to draw myself closer to my religious “opponent” while maintaining my own integrity. This certainly is the ideal and I am forever grateful that I spoke to Jesus before I spoke from judgment and anger.

Revamping???

I have been thinking a lot about the format of my book. It lacks flow and an easily understandable angle. It's a mish-mash of journals, letters and my example 1, example 2, verdict format. I am thinking about, as I edit next month, transforming the latter to be a diary entry from that time in my life. It would be technically inaccurate, as I did not write a journal entry that day ( I was too busy living it!) but I could explain that in my introduction. I'm thinking about calling it "Sick World Diaries; Life as a Patient". I wrote today's blog in that format. It would mean a lot more editing than I would like but it makes sense and would give me more room for exploring emotions. It also would help to alleviate some of the "preachiness" contained in some of the chapters.

Any opinions would be very much appreciated!

That Which Is Important

March 12, 2006

It’s been years since my second transplant. I have worked so hard to rejoin society! I have a “real” job now and 2.5 children. ( 2 dogs and a bird count, right? ) I pay my own bills and have a wonderful husband. I live in a nice home, rented, but nice. I have some friends and a few hobbies. I’m working on my dream to be a (paid) public speaker. From where I sit, I’m doing everything there is to do to hold my place as a “normal” member of this society. I’m living the rat race and the dream all at once.

With all of this, I have lost hold of one of illness’ greatest gifts; the clarity in day to day living of That Which Is Important. Lately, I have been focusing on this and trying to bring it back. I have been amazed at how unsuccessful I have been.

That Which Is Important is all that is sacred and sweet about life. It is enjoying all that this physical plane, this earth, has to offer. Jason and I hold hands as a natural display of affection and connectedness. How many times do I hold his hand and really feel the texture of his skin, the gentleness of his grip? Very rarely. This is usually something that I do absent-mindedly. Today, I put all of my consciousness into the grasp of his hand and I was overwhelmed with tenderness. The touch of his skin was intoxicating and I felt like the luckiest person in the world to have that opportunity to hold such a perfect hand. This is what it is like to be in touch with That Which Is Important.

I was able to catch a few more fleeting glimpses today when I ate my favorite Mexican meal, cuddled my silly dog and had a good laugh about the possum on our front porch. It is a matter of simultaneously being in the moment and being just outside of it enough to appreciate its simple magnificence. It is a moment of profoundly deep gratitude.

I remember when I was very sick this kind of connection with That Which Is Important was very natural. It was as though there was a grid in front of me and I could see the connection between events and individuals so clearly. I could easily see how we, as humans, stand in our own way with self doubt and complicated excuses. I watched people miss the beauty in their own struggles. Things just made sense. Since I have crashed back to earth with my physical health, this grid has disappeared. I am once again, standing on the ground with two feet, confused and full of self doubt.

I imagine when we leave this earth certain kinds of experiences will not be available to us. No longer in a physical form, food and touch (and possums?) will not be a part of existence. For this reason, it is imperative that I stay aware of all of the modest parts of living that, when noticed, are truly exquisite. In this whirlwind of a world, I will continue the struggle to remember That Which Is Important.

When Beliefs Collide

Another busy day! I wasn't able to finish yesterday's entry before work but I hope to do so this weekend. I have lots and lots of ideas brewing...I look forward to exploring them all in the coming weeks!

When Beliefs Collide

I was raised in a very Christian home. To my parents’ dismay, not all of their children feel in line with that belief system. While I have a deep spirituality, it does not follow all of what the Bible talks about. For example, I believe in Jesus but I don’t believe in a literal, eternal hell. My parents, however, follow the word closely and hell is a reality for them. It’s for this reason that my terminal illness, coupled with my beliefs, was extremely distressing for them. They feared that once I left this earth, we may end up in different eternal residences and, therefore, they may never see me again.

This issue was very painful for them and was brought up in different ways throughout my life and my illnesses. Sometimes I felt compassion for their heartache and sometimes it made me very angry. I had even contemplated lying to them and saying that I had done all of the things they asked me to do, just so they could have some peace. Ultimately, I was pushed to a point of such frustration that I chose to confront them about this issue. My plan was to lay down strict boundaries and declare the topic of religion off limits. I would tell them in no uncertain terms that their feelings were their problem and they should leave me out of their religious quandaries. Luckily, before I had this bitter conversation, I decided to pray about it first.

The irony doesn’t escape me that my most trusted “spirit guide” is Jesus. I feel very close to him individually, just not the religion of Christianity. This distinction may seem strange to some people, certainly that was so for my family, but nonetheless was where I was coming from. I sat down to pray to Jesus about this problem and was flooded with answers. In fact, he gave me a list of things to tell my parents and I have included some of those here.

When I sat down to talk with Jesus, I knew my father was on his way over to spend some time with me. Because of this, I focused my attention on talking with my Dad. I asked the question “Jesus, how do I talk to my Dad about my beliefs”. These are the things he told me. They simply popped into my head as a conscious thought and I wrote them down.

1. Tell him that he is confusing religion with rules. Religion is not rules, it is love.
2. Tell him that you are my child and I love you. Ask him how in the world he thinks I would ever let anything bad happen to my child?
3. Tell him that everything you have done, you have done to find love. Love of yourself, other people and love of the universe. If Buddhism and other traditions help you learn more about love, then they are a good thing.
4. Tell him how you always turn to me first with your big problems.
5. Tell him that when you say you love me, you mean it, not only as a practitioner, but as someone who knows me personally.
6. Tell him to lay his burden down.
7. Tell him that he will never know how much I love you but that is all that really matters.

Let him think on these things. Arguments are not necessary.

Arguments were not necessary. I read these things to my father and he cried. He told me that he felt sure now that I would be ok. He was able to lift his fears and sadness and embrace the concept that, despite my “non-traditional” route, I had found my way to heaven.

My parents and I still come from a very different perspective on religion. What this taught me was that when religions collide, there are two ways one can handle the situation. One can fight back with the force of the ego and claim “rightness” or one can dig deeper and find the spiritual thread that connects most world religions; love and compassion. I could have gotten indignant and told my parents to back off. Perhaps that would have been acceptable, reasonable. But would it have been helpful and healing? Certainly not.

By listening to the Divine Voice inside me, I was able to draw myself closer to my religious “opponent” while maintaining my own integrity. This certainly is the ideal and I am forever grateful that I spoke to Jesus before I spoke from judgment and anger.

Healing vs. Medicating

At one point during my illness career, my best friend dragged me to a 4 night conference to listen to a Buddhist Llama. I had just lost a good transplant buddy and was feeling sorry for his death and my own physical crosses to bear. If you have ever heard a Buddhist Llama speak, you know that they tend to say the same thing over and over again. It may sound boring, but it usually is quite powerful. Llama Zopa began by repeating the phrase “Happiness comes from the inside”. I nodded my head in complete agreement. Here in the west, we have accepted that money, fame and material possessions can not fulfill a human heart. (Despite this, we spend plenty of time and energy striving for those exact things.) “Happiness comes from the inside”. Yes, I was in complete agreement that my own happiness comes from my love of life, myself and The Divine. “Happiness comes from the inside”. Certainly, yes!

Suddenly, however, the phrase changed and my head was no longer nodding in agreement. “Suffering comes from the inside”. What? How could he say such a thing? Does that mean that I have chosen to suffer the difficulty and pain of all of my body’s maladies? “Suffering comes from the inside”. How dare he suggest that my suffering is something I could control! My suffering comes from a physical ailment that was given to me by a genetic twist of the DNA. “Suffering comes from the inside”. What an insult to me and those that I love who have dealt with serious illness. No!

It took me a few weeks to understand what he was talking about. He was talking about the difference between healing and medicating.

Example 1:

When you have been given a terminal diagnosis, hopes of “getting better” eventually leave your mind. I was suffering under the weight of all that it meant to die so young. I didn’t know what to do or where to go for guidance. There aren’t any brochures in the doctor’s office on the steps to accepting death at 29.

One night I was sitting in front of a glass door. I was crying and looking out into the dark night. At one point, my vision shifted and I was no longer looking outside but at the image of myself reflecting back at me. There I was, Tiffany, a young woman with red hair in a green shirt crying and thinking about death. My image was translucent and I could see through it to the trees behind the door. As my eyes danced back and forth, I saw meaning in this reflection. This girl, the one with red hair and a green shirt, was temporary, so temporary she was merely an illusion. “Tiffany” was the name given to her but in no way described her entirety. This reflection was a perfect representation of the reality of my existence. I was able to see my physical presence and my eternal self all in one. It was that night that I was able to say goodbye. Goodbye to the physical image, the red hair, green shirt and the name “Tiffany”. I was also able to embrace the part of that image that I was not able to see with my eyes but feel with my insides. The permanent, translucent part of me that has no name or hair color. With that exercise, I was able to let go of the ideas of medicating my illness. The part of me that felt broken because I had to say goodbye was healed because I was able to see the truth. “Tiffany” is only a part of me, there is so much more that I can’t see that will be rediscovered on the other side.

Example 2:

I have been diagnosed with chronic rejection twice; once it progressed and nearly took my life and the second time it stoppped progressing and stabilized. Each time I asked myself the same question; "How do I live now?". I had to began the process of shifting from long-term thinking to short-term thinking. I had made plans. Plans for my career, plans for my marriage, plans for buying a home, plans to become a "normal" person in our society. When I found myself facing death again, my long-term plans seemed almost silly. Why was I working so hard? On my last day, would I look back on my life and wish I had worked harder? Of course not. I began to design a life in which my relationships took priority and my ambitions no longer revolved around career goals.

While this process has healing elements, it can be a difficult transition. It’s like the peeling of an onion. One by one, the layers of my life unraveled and I gave something up. It started by quitting my job and then, as the illness progressed, I had to give up a hobbies and eventually, I would be giving up my independence. This was a painful process.

What is wonderful to know is that after all those layers are gone, you are left with only the core. The sicker I got, the more I could actually feel the separation between my body and my mind or spirit.

My core was never sick or tired or even scared. I found out that my core is an indescribable, un-namable part of my being with no adjectives or duties associated with it. This is one of the greatest opportunities of illness…to transform the Illness Identity Crisis into the deepest knowledge of oneself. Inner Peace.

There is great healing in knowing who you are without any lables. I could have chosen to focus on what I had given up: my job, my hobbies, my independance. This would have allowed me great suffering. Instead, I was eventaully able to focus on what I had gained: a new understanding of my own soul and a deep appreciation for those I love. This filled me with great happiness.

The Verdict:

Healing is something that can be done no matter what the physical diagnosis. When we bow to the skills of our medical team, we think that we are asking for healing. In fact, what they have to offer us is merely medicating. Ideally, we would incorporate both into our lives. Let the trained professionals do the poking, prescribing and cutting. It is the patient’s job to do the healing.

Many people pray for and some experience miracles of unexplainable recovery from illness. What I learned is that there is another kind of miracle that is not nearly so dramatic. That is the miracle of learning to love life despite serious disability or terminal illness.

I may have been trapped in a body that wasn’t going to be cured by a miracle, but it was up to me to decide if I wanted to stay trapped in my self made prison or to escape the bars through self love and by learning the lessons this broken down old body had to teach me.

In time, I learned that the illness wasn’t my choice but whether or not to suffer was. If I were listening to Llama Zopa today, I would surely be nodding my head; “Happiness come from the inside. Suffering comes from the inside”. Certainly, yes!

Hey, Look at Me!

Chronic Babe has an awesome website with tons and tons of good stuff. I feel honored to be included in that! I found out today that she has linked me on her site...check it out: http://www.chronicbabe.com/help-desk/cat/19/
I'm thrilled to be part of such a babalicious group of patients and professionals!
Thanks, Chronic Babe! :)

Back in the swing...

Thanks for the well-wishes and I'm sorry I've taken so long to write again. This past weekend was a fun time with good, old friends but also packed an emotional punch that I wasn't expecting. Being back on the old stomping grounds transported me back in time...a very different time than the one I currently inhabit. There was a day when I wanted to be an actress more than anything and was working to be a good one at one of the best conservatories in this country. School was difficult and exhausting but I loved it deeply. After my second year, I had become so ill that I was getting IV antibiotics every few weeks. I was simply too sick to return for my third year. I had been asked to join the directing program, something I considered an honor. Instead, I was put on the lung transplant list and walked away from the school, my friends and my dreams.
When you are in the middle of a health crisis, you don't always have time to feel through what is going on. I was sad to leave school but was focused more on the transplant ahead and my move to California. Here, in 2007, twelve years after I left I see a different picture. I see the girl with the big dreams and the passion for what she was doing being forced, yet again, to give up another life love in the name of illness. I grieved for that girl this past weekend. I felt so sad for her loss.
I don't have my degree. When I give talks, I struggle underneath the weight of inferiority because I am the "least educated" in the room. Not for lack of willingness or intelligence, mind you, but for lack of health. When I saw my classmates, I yearned for the closure and accomplishment they had achieved with that silly degree on their wall at home.
Sometimes, grief hits me at a time and place I didn't even know it was hiding. This weekend was one of those times. I am not depressed or broken...in fact, I discovered that I was quite proud of my current aspirations. I am, however, letting myself feel the feelings I needed to suppress back in 1995. I am letting myself mourn for the girl who was only trying to keep her head above water all those years ago and had to leave the world she so wanted to be a part of. I am sorry, Tiffany, that illness took away your dream. I am happy that I have been able to find another one.