Monday, 25 April 2016

It's A Crazy Maker

This is such a strange disease. For anyone not going through it, the process of slow death from ALS, the process of losing everything along the way, the frustration, the madness, the anger; it's all so difficult to put into perspective. Living this way, with the slow deterioration of my body, with the loss of my independence, the loss of capacity, the loss of freedom, with the ever increasing level of inability. It's a crazy maker.

There are people in my own family who are so completely unable to deal with seeing me go through this that I don't hear from them at all. Some of my children don't read my blog; I suspect it's just too much reality for them to deal with. Friends have left, gone because they simply don't know what to do or how to respond. Nothing really noticeable is happening, so why worry? Once again, it's a crazy maker, not just for me but for them too.

Perhaps the worst part is the complete lack of drama, the absence of any sort of crisis or immediacy. While I can tell in intimate detail the effect ALS is having on me on a daily basis, it doesn't involve hospitals or surgeries or powerful medical treatments. In the worst of all possible ways, ALS simply involves sitting, watching, waiting, and living with the fact that each day is just slightly worse than the one before. It is truly a death by a thousand cuts, most of them so small they are unnoticeable.

I am simply unable to properly express how I feel. It is such a mixture; frustration, acceptance, anger, sadness, depression, joy, happiness. All bundled into one, sometimes even at the same time. I can't cry that much; I'm happy to be alive. I'm not ready to end my own life; the disease isn't far enough yet. I'm in this kind of bland, gray middle ground, too sick to live, not sick enough to die. I'm waiting, impatiently, for something to happen. I am waiting for the next shoe to drop, except there are no shoes, only little bits and pieces. And it's still a crazy maker.

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