Thursday, 3 December 2015

I'm Waiting

Every once in a while I get a morning where I get to forget about having ALS. This morning was like that. Katherine and I slept in until noon, or at least mostly slept in. We lay there for a while just holding each other, forgetting about time passing, forgetting about the world outside. We didn't say much; there wasn't much to say. Then, suddenly, it was over, that moment of peace, and the day began.

Shortly after noon Katherine announced that it was time to get up. As she often does, she fairly leapt out of bed, throwing herself into action. She told me once again to get up, then marched into the kitchen to get us coffee and breakfast. I tried to roll over, failed, and tried again. Then, ever so slowly, I managed to pull myself vertical as she arrived with coffee and breakfast. She sat in my wheelchair while I sat on the edge of the bed. We ate, and talked, then ate some more, and talked some more. Soon an hour had passed.

Our topics this morning ranged widely; the impact of money on life choices, career choices. We talked about our personalities, life approaches, and of course, ALS. We talked about my progession; it seems to have escalated since my UTI last summer. We talked about fast progression versus slow progression. There are plenty of times when I wish this disease would just get going and finish me off, so I could be done with it. Then there are the many, many other times when I am grateful for slow progression, for having the time to travel, to see friends and family, to do things "one last time".

Katherine made the most cogent comment of all. She said "You are waiting. You know what is coming and you are waiting." That's probably the worst part of this illness. I am waiting for the inevitable. When progression is slow, the wait, the dread, is longer. When progression is fast, I don't have time to worry about waiting. I don't have time for much of anything. I am waiting. Fortunately mornings like this, and Katherine, make that wait bearable.


  1. Yes, we wait...some of it good...some of it not so good...but we wait. Thanks for sharing your heart and soul once again.

  2. Yes we wait ,not knowing if this is the day or maybe this night,its a bloody horrible feeling