Hanging On

Six months ago I made the decision to end my life. The target date was to be March 15, or some date around there. You see, you can't actually pick a date, per se. You have to arrange an appointment, preferably a couple of weeks away from your target date. Nonetheless, I had an approximate target date. I got the MAID papers ready, asking two of my close friends, Elizabeth and David, to sign them. They were in the room with me when I was diagnosed; I thought it poetic that they should sign the papers which would lead to my exit.

November and December were harsh months. It wasn't just the winter which closed in on me. It was the loss of freedom, that I could no longer get in my truck to go somewhere. It was the increasing pain in my left shoulder, in my arms, in my neck. It was the realization that both the pain and the weakness were getting worse, at a substantial pace. I could see it coming, complete loss of my arms. It was a place I didn't want to go.

Then March came. I did not book the final appointment. I canceled my departure, chickening out of it all, fearful of facing death. While I was, and still am, declining daily, I just could not bring myself to book the date for my last breath. I just couldn't do it.

Now, a couple of months later, my arms have gotten much worse. I am beginning to struggle with feeding myself. I cannot pick up a towel from the floor, nor my water jug on the table. Getting something out of the fridge, regardless of weight, is tremendously difficut. Making meals is getting to be a truly non-trivial task.

Yet I feel completely different today than I did last November. Yes, winter has passed; it does make a difference. However I know have the van, with David making sure I get out at least once a week, sometimes more. Others are helping too. We are also working hard at getting me a live-in, someone who can help with both the simple and complex tasks I can no longer do. My financial situation, while still precarious, is good for a while, something which challenges a great many other PALS.

The only things missing are the things which have long been missing. I am still alone, lacking a partner or lover, someone to be with both emotionally and physcially, an important thing for me. I'm still getting worse; that never changes with ALS. Yet I have so much, so much in my life. In the darker days, it's an easy thing to forget.

I will have to leave, sooner or later. When my arms fail completely, that will be a big pressure point. But until that day comes, I am going to hang on for all I am worth, fighting daily to live my life, to live with ALS. I'm not yet ready to let go.