Thursday, 24 October 2013

Best Before

I hear from a lot of other People with ALS, or PALS for short. There is a large and active online community of people struggling with this disease, fighting the effects on a daily basis, living their lives as best they can while beset with the challenge of loss of muscle control and viability. The one thing we all have in common, besides our illness, is that we can still type or interact with the keyboard through some other intervention. There are powerful and complex computer systems these days which can read eye movement or listen to speach and translate that into keystrokes. We can still communicate.

Unfortunately much of that communication is bad news in our situation. Many of the articles we read about ALS, many of the research reports and studies, and almost all of our health updates lean towards the negative. This is not a disease where you get good news all that often. The losses that I see in others I know will come to me. To hear from someone who was diagnosed two years before me gives me insight into what I must face in two more years.

Yet these same messages can also be messages of hope, messages describing a future that contains not death, but life. These are messages that tell of activity, vibrancy, emotional support and lives filled with love and care. These are messages of triumph, not of body but of spirit, triumph over the limitations that our lives have imposed on us, triumph over our failing state of health. These messages are of life in the face of certain deterioration unto death.

There are bad days with these messages, the loss of friends both online and in situ, other PALS who have succumbed to the inevitable outcome of ALS. There are bad days with these messages, reports of deterioration and loss, of failed care plans, of poor to nonexistent health care and support. These days, the ones with bad news, often seem to overwhelm all the other messages. They seem to be more pungent with the smell of misfortune and failure.

In all of this there is but one substantial truth. This year in Canada there will be approximately 250,000 deaths. As the inevitable outcome of life, death is a fact, a reality, in truth a necessity. For from all death springs new life, this cycle never ending. I and my fellow PALS are simply a small part of that equation, the few amongst the many, whose lives will end perhaps with more struggle, earlier than hoped, but will end nonetheless, as a part of this vast human equation. PALS are no different than anyone else; we just have a "best before" date. Still, I would like to get some good news now and again.

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