Wednesday, 24 February 2016

No Free Passes

ALS attacks all kinds of people; every age group, every socioeconomic class, every political type, every race, colour and creed. It is an indiscriminate killer; a random, non-selective, capricious disease with no apparent reason behind it's choice of target. The means that people who get this illness can come from the best situations in life, to the worst situations in life.

Some time ago I heard from a woman about 10 years younger than me living in a clearly tragic situation. She has ALS; it is breaking her body and destroying her life. To make matters worse, her husband has a drinking problem. He had stopped for some time, but when she was diagnosed he started again. It had reached the point, when last I heard from her, that he was coming home every night drunk, and angry.

Alcohol and anger make for bad bedfellows, especially when a strong man confronts a failing woman in a wheelchair. She never mentioned physical violence, but there was certainly emotional distress. He blamed her for his life, for the fact that he was compelled to care for her, or, according to her, as he said it, "wait on her hand and foot." He was angry that her illness ruined his life, ruined their marriage, at least the way he saw it. He was completely unable to deal with her illness, and hated what she had become.

When I last heard from her, she also said that he had arranged to have her put in a care home. This was not hospice so much as one of those care facilities where we park failing seniors and people with Alzheimer's. I suggested to her that this might not be a bad thing, given her situation at home. As she rightly pointed out, she was about to lose her home, family, surroundings, and her life. It was all so terribly wrong.

She died yesterday. Another PALS let me know, sent me a note. She died in hospice, away from her home, in unfamiliar surroundings. She died. As to whether or not she was alone, I know not. As to whether or not her husband stopped drinking once she was out of his sight, I know not. I know one thing for sure. Her death will not ease his pain, just as the alcohol did not ease his pain. Nor will it remove his anger, just as the alcohol did not remove his anger. He's going to carry that weight for a long time.

ALS is a terrible disease. Not only does it steal your life, you don't get a free pass on all the other things which happen along the way. Shitty life situations remain shitty, perhaps getting worse. Financial worries still worry you, certainly getting worse. Drunks remain drunks. Abusers remain abusers.

Whenever I think about how bad my situation is, it bears remembering. I am in my own home. I have a woman who loves me beyond measure. I have an incredible support system, family and children who love and care for me, friends around me who want my life to be as good as it can be for as long as possible. I may have a terrible disease, but I have a good life.

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