Preface to this post: there are some things that I write which seem to be more difficult to share - sometimes the truth seems more painful - but it is part of this journey with its own place and therefore somehow, necessary. It is on the eve of some more rigorous medical support - to be delivered by a home care nurse tomorrow to help address some of the symptoms that have kept me in physical discomfort for awhile now that I frankly waited too long to ask for, but now it is on its way - to be administered by an angel of mercy, courtesy of our fine public health care system, in collaboration with my doctor. In other words, what I am about to say is part of this story - but wrapped around it is the prospect of this imminent support along with the love, notes of comfort and prayers from special people in my life that should not be lost in what follows.
I suppose you know from one of my last posts I have been seriously thinking I should stop this. It is in part because I have been physically feeling quite wretched - and in part because a part of me wants so desperately to be one of those transcendent people who people might admire for being plucky and positive and transformed at the end - and yet that is not where I am.
I saw a part of a CBC series on end of life issues the other day where people with terminal illnesses and severe disabilities were arguing for and against assisted suicide - and the story of one man in particular stood out. He was wheel-chair bound with enough medical challenges to fill a dictionary - cerebral palsy, his colon and one of his kidneys removed - and yet he passionately stated that despite his constant pain - life was precious and he feared the prospect that opening the door to a physician-assisted option might lead to people like him being seen as disposable. And more than once on this journey I have questioned my own motivation in "choosing" not to pursue dialysis or the transplant option and wonder (as is referenced in much of the literature around end stage renal disease) whether certain people would regard this choice as "suicide" - albeit a more complicated one - as an admission I see my own life as disposable. And I will admit to you now that the worse my symptoms become, the more I have second-guessed this decision - honestly have had moments when I imagine calling up the specialist and begging him to do everything and anything to make it stop - even after explicitly writing "no dialysis under any circumstances" in my advanced care directive. But questioning my decision-making is familiar territory - and it doesn't take me long to rule it out because the reality of my bigger issues come home to roost. Because I call it a choice but that is not accurate. Of all of the organs in demand, the wait list for kidney transplants is higher than any other organ - desperate people who either can no longer tolerate dialysis or medically have outgrown its usefulness. My specialist has already told me that I would not be a viable candidate for the transplant list - unless I demonstrated a glimmer that I was prepared to overcome my eating disorder. Accepting dialysis would mean complying with a strict diet and controlling fluid intake - again, not something my eating disorder could or would allow. The fact is I have descended below my fictional goal weight several times over and even the prospect of an imminent death doesn't stop me from stepping on the scale at least four times a day - searching for a change in the needle that might allow me time in the day to get it back to a point that is acceptable. Still search in the mirror for a sign my stomach is sticking out in
a way that people who see me would label me fat. And food now feels literally like poison - what cannot be filtered sits sickeningly in my system now and that feeling stays with me most of the day. If I truly believed I could manage my kidneys and not continue to contend with that other form of self-torture - I would not be in this place. This is what it means when you have given over your power - when the only respite from it is a permanent and irreversible succumbing. The second-guessing is also a fiction that denies the truth of what I have become. This is not easy or pleasant to admit when you have walked the planet for most of your years trying to hide the obvious. And of all of the things that I was strong enough to accomplish - the one thing I couldn't and still can't accept is tipping the scale in the wrong direction. This single-minded, pathetic train of thought that over-rides every other feeling - all of my self-will. When the worst thing I can think about what is to become of me in the coming weeks/months (?) is the prospect that I will be bloated with fluid my body can not eliminate at the end. I tell you these truths not to invoke disgust or worse in some ways, your pity. This is a slice of my story. Nothing more. Instructive only as a window into what it means to live in the world of an eating disorder. It is not all that I am - not representative of the facets of my character that still fight on...but it is part of what has defined me - has set this ride in motion and therefore the story is not complete without the whisper of its presence.