When I was diagnosed at 6 months old with cystic fibrosis, my parents were told I would only live to be about eight. Through the mourning, their objective became to give me the greatest quality of life possible.
At about 6, medical treatments for CF had advanced and the life expectancy was increasing. I had also become a horrible brat because my mother had decided "quality of life" was equivalent to "never being told no." When they began to see I might live beyond the initial predicted eight years, they began to reign me in and the objective became to give me the most normal life possible.
At age 12, my lung infections were no longer responding to oral antibiotics and I needed to go in for "tune ups" with IV antibiotics in the hospital. This made keeping up with school more difficult so the objective became to manage my illness while staying focused on finishing high school and going on to college.
When I was 21, I was in my fourth year of college at an acting conservatory. Long story short, I still had two more years to go before completion but my health had deteriorated and I had to drop out. It was at this point they chose to put me on the lung transplant list. At this time, the objective to finish college remained and putting off lung transplant indefinitely was at the top of my priorities.
At 22, I re-entered college. It was a small school near in my home town. The objective was to get a degree, any degree, just finish college.
Only half way through the semester it became obvious that I could not keep up with my classes. For the second time, I dropped out of college. The objective became to focus on staying healthy and avoiding the need for lung transplant. I moved out to the Bay Area and sought the magic that would stabilize or cure my illness.
At 24, I was very sick and had to move back to my East Coast home. I was at the top of the lung transplant list and sick enough that I began to accept the possibility of having the surgery. The objective became to maintain as much quality of life as possible while I waited.
At 26, I got my new set of donor lungs and I was off and running. The objective then became to figure out where my place was in this world and make something of myself.
At 28, I hadn't figured out how I wanted to make my impact on this world. I was floundering. 2 years and 2 months after my transplant, I was diagnosed with chronic rejection. The objective then became to power through the illness (aka denial) and figure out my life anyway.
At 30, I could barely function. I celebrated my birthday on the couch of my parent's house, unable to even get my own drink from the kitchen. At this point, the objective had become to have a rich inner life and say all the things I needed to say before I died.
Later that year, I decided to talk to my transplant team about the possibility of a second transplant. After their initial response of "no" they later came back and offered to put me on the list again. The objective at this point became to become equally content with the possibility of re-transplant or death. There was another objective in play here and that was to simply survive for the possibility of transplant.
My story will end here for now. I never made it to the next stage but I have seen it in my friends and hospice patients who have passed away. After the objective to simply survive comes the objective to just be comfortable. After the objective to just be comfortable, when people are "done", the objective becomes to die.
I am writing this today because the transformations in our objectives is a big part of illness. You might begin by hoping for a cure and end by hoping for less suffering. In my case, I have hoped for everything from normalcy to mere survival. Now, my objective is to live a huge life while I can.
I have gotten a few emails and seen on some message boards sentiments from parents with young CF children talking about this objective curve. They want to be educated and read the books and have the conversations but they are simultaneously horrified and deeply saddened by reading the stories of people like me who are much further down that path of illness. As an example, for me, transplant is the greatest gift--for them, it is their greatest fear.
I recently told a CF mom that I didn't think she should read my book yet. (Yes, I am a terrible marketing director, I know!) She said my story made her cry and I just thought my book would be too much to bear. I saw another CF mom post on a listserve that she had read "The Power of Two" and she cried herself to sleep. That book inspired me and made me feel so happy...this mom saw in it a bleak future for her child, punctuated with the end result of organ transplant.
I don't know if it was the right thing to tell the mom who inquired about my book, that she shouldn't read it yet. I've never been in those shoes. I don't know if the mom who read "Power of Two" will someday be happy she did. I just know there is a fine line between knowledge and Too Much Information. I know there was a time when the word "transplant" made me nauseous. I don't think I needed to face that possibility until it was time to face that possibility!
Did I need to think about transplant when I was 6, 12, 19? I don't think so. Then, again, perhaps I would have lived my life differently, better somehow, if I knew that was on the horizon. Maybe I would have taken better care of myself or appreciated my lung function more. Then again, maybe I would have put myself in a bubble an lived out of a fear of my future.
There isn't really a need to face the hard, scary stuff until you have reached that bend in the road. Or is there? I'd love your opinions!