Friday, 12 August 2016

Faster Is Better

I don't always say what I truly feel in this blog. The truth is that I often dampen it, soften it, so that those close to me don't despair, are not put in pain. There are things I feel, things which are deep within me, which just seem too dangerous to say out loud, to likely to provoke protest or denial or dismissal.

This kind of thing happens often enough already. This whole discussion about slow progression, so many people saying it's terrific that things are going slowly, that I have more time to live, more time to do the things I want to do. This slow progression is not a blessing. It's a curse. It means I have longer to live with the terrifying thoughts about what will happen to me, with the pain of daily life, with the slow incrementalism which I know can only end in complete debilitation and death. I don't get to do more; I am forced to do less. I don't have more time to live; I'm taking longer to die. I am being tortured to death. Almost universally within the ALS community, fast is considered the blessing and slow is considered the curse.

My friend Sarah Coglianese wrote about this in her blog yesterday, wrote about how her slow progression has made her feel. I want every one of you read it, and remember as you do that this is a young woman with a beautiful daughter and loving husband. Read it, and remember that no matter how many reasons you have to live, eventually your quality of life gets to a point where you can't go on. Then, some day when it's all just too much, I assure you, you will die.

I feel what she feels. She writes what I wish I could say more often. I am in a place where, like Sarah, I am surrounded by death, surrounded by people who are becoming more and more crippled each and every day. This is why I attend so few of the local ALS support group meetings. I don't need to be reminded of what is happening, and what will happen to me. What Sarah says is truth. Even her last paragraph, her apologia, is tinged with her painful reality, and her reality is my reality.

I don't want to die, but I will. I want to live, but I cannot even yet while I breath. This is a shitty, horrible monstrosity of a disease. Slow is no blessing to me. I wish I had died on schedule, or even a bit sooner. It would have been so much easier. There would have been so much less pain, so much less struggle, so much less of this feeling of failure and burdensomeness, so much much less of having to ask for others and depending on their help. And a lot fewer death announcements in my Facebook feed.