Wednesday, 16 April 2014
The Valiant Battle of Gloria Taylor
Last night - and with some trepidation, I watched a documentary profiling Gloria Taylor - the brave BC woman with A.L.S. who took her battle for the right for a dignified death assisted by a physician to the courts. Sadly she passed away before the case ultimately made it to the Supreme Court - in a hospital, not in her home as she had hoped. It was painful to watch - not only for the indignities she suffered, but for the interviews with her family members who painfully watched her waste away and so eloquently shared many of their last moments with her. Being forced to ask for help to get off the toilet in a hotel bathroom when a friend was unable to assist her- gradually unable to receive the relief from a pain clinic as her muscle mass wasted away. It felt all too close to home and yet I couldn't look away. She lived a year longer than the doctors had predicted and it just reminded me of how excruciating it is to me not to know how much longer this will go on. More transitions happen to me - the itchiness that is a byproduct of the renal disease has returned in the last week with a vengeance. I sleep more and more each day - sometimes up to seven hours in total through the morning and afternoon. I feel weaker and yet I fight every day to do the simplest things without help - showering, making a cup of tea. Eventually I know I won't be able to keep this up without more constant baby-sitting from my family members - but knowing when to ask for that help is so hard for me to figure out and my seemingly insatiable desire to get through this myself becomes more and more unrealistic. And as confident and prepared I have felt about all of the preparations necessary for the end for so long now, not knowing what to expect next seems the most bitter pill to swallow. And I find fear setting in, in a way it hasn't before about the ultimate transition that I know is coming. I wish I had the belief that so many people cling to about what happens when that moment comes - but I simply don't have a clue about what to expect - I seem to lack the capacity to take comfort in what many people envision about the end of life - that is just not where I am and I don't see that changing. And yet a part of me prays for a painless end - going quietly in my sleep with a minimum of fuss or helplessness - anything to spare my loved ones more pain than they have already experienced. I should be grateful for these days and yet I feel nothing but resentment now - and knowing that the court's effort continue to drag on, it just seems so patently unfair that we can't make decisions without the aid of professional help - that the options that exist are risky and for the most part, unrealistic. I desperately hope that the courts will do the right thing and recognize the suffering that is going on daily for thousands of Canadians who are the subject of valiant efforts by the health care system to keep them going, regardless of how miserable their quality of life. Serenity just doesn't seem like too much to ask for, does it?