Sunday, October 6, 2013

Imagine the hardest decision of your life...

I had a dream last night, that I was in Toronto for testing. I can't recall the particulars, but I do recall the tests came out favourable for double-lung & heart transplant candidacy. I recall the dream being surreal, difficult. I woke up realizing this is one of the reasons I've been fearful of going for testing: what if I am a candidate? A while back I tried picturing myself making a decision and I couldn't. This decision is about more than just adding extra years to my life, should I survive. In essence it's about choosing how to die.
Think back to the hardest decision you've ever had to make. It could have been about what house to buy, what school to go to, whom to marry or not marry. It could have been about making the decision to pull someone off of life-support. All equally tough decisions.

Now, imagine for a moment, being given the opportunity to decide your own death. Stop, think. Breath about that for a minute. Choosing how to die. Note that I didn't say to die or not. At this point, death is inevitable (it is for all of us, eventually). Suppose you are in the prime of your life, your career is taking off, your family of origin is finally coming together, a child is being born in your world. Your marriage (or love life) is optimal. You have everything you've worked so hard for; everything you've always wanted and didn't think you wanted.

Now, after picturing all of what you have, imagine facing choosing death. Do you die, surrounded by all that you love, or do you try for more, and risk dying alone - away from all that you love. The risk of dying alone is so high it almost seems like an unwise choice, but the reality of a shorter life is inevitable.

In the spring when I shared about transplants as being a treatment option, many people around me didn't quite understand what that entails. They didn't realize that 2 lungs and a heart is one of the most rare and complicated transplants done ever. So rare that Toronto conducts on average one per year. Statistical outcomes and life-expectancy are also very poor. Last week my cardiologist put it this way: dying in a  post-op ICU in a foreign city without family and community around is, of the 2 choices, the most horrifying death that he wouldn't even chose. The post-op pain from that kind of transplant is apparently too much for most. It may be for me too. On the other hand, my cardiologist also said that this is the only treatment possibility, otherwise there is nothing else.

Given that I am not ready to go, I am utterly confused in what to do. For a few months I decided not to go for testing, believing that I wasn't even stable enough for the 5 hour-ambulance transfers. Having been outside in the 'real world' on occasion, I've changed my  mind and decided that I won't know unless I go. I am not looking forward to the week of testing. Some of the tests are not pleasant. When I think about voluntarily putting myself through the tests, I realize, if I move forward, I am voluntarily putting myself through my body being ravaged. For what? At best to wake up in an ICU alone and have my body reject both the lungs and heart? To have a successful surgery, painful long recovery only to live 2 more years (1 of which I still won't be able to travel).

I reflect in silence. My (O2) machines are off today and I'm using a large, quiet back-up. I haven't heard this kind of silence in so long. It's what creates fear. Fear of making the wrong choice, fear of having to choose my own death. Fear of being alone at the point of departure.

I already know that I am also very blessed to be able to have this choice at all. Who gets to choose that? Not many people get to choose home where I live, love, learn. I know the beauty in all of this on a highly spiritual and detached level. As a human being who's not yet ready to go, who's very much attached to all of her loved ones, close and casual, I cannot sit in that blessing today. I only feel the silence of the worst decision I've ever had to make. Some moments I travel back to last year (2012) and can't believe that life as I lived it out there is over. It's crazy the difference a year makes.

As for the worst decision if my life: in the spring I decided that my decision would be not to make one which by default, meant to not pursue transplant options. Just for today, that's no longer good enough. I will pursue as far as my courage or medicine will take me. Until then, I keep keeping busy for fear to losing it in this surreal life of mine.