I write these annual health updates to keep a log of how my illness progresses year on year. It’s so easy to forget as time passes, especially the overview, and too easy to get bogged down in the detail of some specific event.
2012 was a boring and tedious year … yes, another one. To May, I was bogged down in a horrible relapse which came far too quickly, was too interesting to the medics and caused me no end of functional trouble.
After treatment, I did make a reasonable recovery through the summer but then had another face operation for skin cancer. Before I was able to blink, I relapsed again - a slow ragged relapse which is very uninteresting to the medics but causes me no end of blah, blah, blah, trouble. Week before Christmas, I called the hospital for help. Grim Christmas. In hospital by the third week of January, 2013. Happy New Year.
In summary, for about seven of the twelve months of 2012, I found it very difficult to get out of the house and, okay, it was, thank goodness, an Olympic year, Euro 2012 was on, as well as all the usual sport but, hell, it was cripplingly dull. I really do struggle to function with the extraordinary tedium of my life and, for a sick person, I am aware that I lead a life of some quality and satisfaction.
During 2012, Tony Nicklinson died. His life struggle and death re-ignited the public debate about right-to-die which has such personal resonance for me and others like me. One of the comments that has stayed with me came from a man with a life-long condition, severe motor function deficit and a wheelchair user. He remarked that Tony Nicklinson had not tried hard enough to live his life as a disabled person and did all of us a dis-service by giving in and seeking this way out, leading others to believe that death is preferable to disability where his own life, and that of many others, spoke to the contrary.
The words linger uncomfortably in my mind. Harsh, I thought. But does someone who has always been disabled and never functioned as anything other than a disabled person really understand the mind-set of a person for whom disability is all about loss - of function, form, friends, work, money, respect, role. I don’t think it so much that those of us who become disabled struggle with the fact of disability but that we cannot cope with the loss, the closing down of our life, the narrowing of our options, the consequences on others who love us. And this is what severe disability means for many of us.
We struggle with pain, shame, guilt, blame, consequence - our own and that of those who love us. It is crippling emotionally. We compare. We remember. It never ends. It doesn’t go away. It doesn’t get better. Some of us cannot cope with it. We think it kinder to go. We see it as the giving of freedom to our loved ones. The ultimate unselfish act. Not for all of us. But for some. Will you be the judge of it? Uncomfortable year, 2012.
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