Saturday, October 20, 2007

From Diagnosis to Acceptance

I have two presentations to prepare for Monday and Tuesday. I'm excited to have 2 days to talk with Chaplain Residents (each talk is 1.5 hours) about the patient perspective.

The first talk is called "From Diagnosis to Acceptance; One Patient's Emotional and Spiritual Journey." This is the first talk I've done in which I will be able to address the spiritual element. That should be fun.

I have been thinking about my diagnosis of chronic rejection. I have attempted to trace my reaction time line. Certainly Kubler-Ross got it right, but I have many more "stages" to add onto hers.

For those of you who have gotten the news that you have a serious or terminal illness, I'd be very interested to know if my time line is similar to yours. Like Kubler Ross's five stages, the following stages could cycle back around and did not manifest as a linear process. I have, however, attempted to arrange them in a way that most closely matches the order in which I experienced them.

I got the news that I had chronic rejection, a diagnosis that was commonly terminal, after months of tests and guesses about what might be going on with my lungs. The day the official diagnosis was made, I was in an exam room and was told in a matter-of-fact tone that they had decided it couldn't be anything else.

I felt a wave of nausea and then my reaction was numbness and disorientation. I felt like I was under water and I could barely make out garbled words coming out of my doctor's mouth. I wasn't sad--I was numb. I remember after my appointment, I went to a hospital snack shop. I still felt like I was in a dream--not quite in my body. When I got to the front of the snack line to pay, a man at the door, on his way out, shouted to me "Yea, maybe next time you'll think about getting in the back of the line!" Like coming out of a deep sleep, the anger in his voice roused me and I dumbly said "What?"
"You cut in front of everybody. Maybe next time you'll get to the back of the line!"
All I could reply was "Well, why didn't you say anything?"
He said something else nasty and left. My head was spinning. The man had upset me so and I had no idea why he had been so mean to me. I muttered something to the line of people standing behind me and the woman behind the counter. It was like something out of a movie--I was only met with cold stares.
Looking back, I imagine I did cut in line. I was barely able to see at that point. It amazes me that those people were so furious with me. It taught me a lesson about giving people the benefit of the doubt--especially when you're at a hospital. It may have appeared as though I was rudely cutting in line, when I was actually in the middle of a profound state of numbness and disorientation.


I think I was numb for a few days. When my emotions began to surface, I moved into the next phase: panic. What do I do now? How do I live? Should I drop out of school? Do I take a trip around the world? How could this happen? What does it mean? How long do I have? How will I die? Will I be in pain? What treatments can I try? What do I do now? What do I do now? What the hell do I do now? During this time, I walked around with a pit in my stomach.

Panic is not something the body can sustain for long. I'd estimate I wrestled with my panic for about a week. That level of emotion was draining and painful so I slid into the next phase that I call Forced Calm. Like a switch, I was ok with everything. I assumed the character of a person who was quite evolved and at peace with mortality. I believed I was that person, but I was faking it.
I continued going to school and even added on a new job. I was busy and I was fine.
I remember going to a clinic appointment with a book. I read it before the docs came in. During my talk with the doctor, I asked how long she thought I had left to live and she said about six months. I reacted with a oh-so-calm "thank you" and went right back to reading my book. I thought I was so together! Truth be told, I read the same sentence over and over with no comprehension of what it said.

As my illness became more debilitating, the cracks in my calm exterior became longer, wider and deeper. My facade became impossible to maintain and I had to face the next phase. This is where most of Kubler-Ross' 5 steps moved into focus.
I was angry. How could this happen so soon after transplant? Why would God give me this gift of life only to take it away so soon? I questioned the morality of transplant itself and wanted to start a movement to have it banned. I was angry that my medical team asked me to continue coming in for evaluation. I was angry with other people who were buying houses and making their way in the world. I was angry with God and the entire Western medical system.

I was sad. There's not much to say about that except that I cried...a lot. It felt like a black hole in the middle of my chest that had no hope of closing up or being filled in. Often, I cried to exhaustion and the only thing that brought an end to my tears was sleep. The Illness Identity Crisis had a firm grip.

I made bargains. I tried to negotiate deals with God. I promised to pray more and be a better person if He/She would agree to stop the progression of my disease.

During this time, I did one of the smartest things I could have done: I started seeing a therapist. I call this step the "opening up to a safe person" stage. He wasn't a wizard and I wasn't immediately "fixed." I spent many hours in his office going through all of the emotions I listed. This time laid the ground work for my next two steps: opening up. At first, I felt completely alone and isolated. When I began talking with my therapist, Glen, I felt less alone. I saw Glen as "the safe person", that one person I could tell my deepest and darkest to without having to think or worry about his feelings. The ability to express my emotions, process them out and have an ally in this strange new world, was the spring board for all of my following stages.

So, Glen was my "opening up to a safe person" stage and the next step was "opening up to the un-safe people stage." This I call the "confessing and revealing stage." Everyone I loved fell into the "un-safe people" category. Not because they were mean or hurtful but because I was so scared to hurt them with the gravity of my situation. I knew when I told them how serious my illness had become there would be tears and pain. I dreaded being the one to bring hurt into their lives. By the same token, I did not want to talk with my loved ones about my feelings. They had enough to deal with on their own--I didn't want to add to their burden by revealing how difficult this was for me. Eventually, however, I began to feel safe confessing and revealing to those I loved. It actually became an extremely important component to the rest of the healing left to do.

This is a long post! I need a break! :) To Be Continued...

~The Daily Grind
~Connection
~Revelation
~Understanding
~Peace
~Gratitude
~Joy

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