I'm Having A Bad Day

I am having a really tough morning, one of those mornings where the weakness seems so much worse than other days, where the tiredness is Mt. Everest, where the aches and pains are draining me. My arms were too weak to pick my legs today; I needed a lot of help getting dressed. Chewing a grilled cheese sandwich for breakfast seemed like a lot of work for little reward. My water mug, even my coffee cup, felt too heavy to lift.

This is really a sad, shitty way to go. It's even worse to do it alone, without emotional or physical intimacy. The tediousness of a slow, painful descent unto death, the weariness of a soul simply seeking rest, a respite from life; I am so done with with disease, yet I am in no way ready to die. I love life too much, yet I find myself thinking more and more that dying sooner, rather than later, would be a good thing.

I am at an angry place right now, frustrated by all that ALS has destroyed in my life. I'm tired of people telling me to be grateful for what I have instead of complaining about what I've lost, especially people who have lost nothing at all. Those with true life losses understand much better what I am going through. Of course I am angry. It's natural.

These are the last weeks and months of my life. I am starting to think seriously about my exit plan, even an exit date. I am wondering how long my arms will hold out, what I will do after they have failed me completely, how I will live then. I think about what will happen when I am in bed at night, alone, unable to roll over or shift, unable to adjust a pillow or lift a sheet. Already my quilt is getting to be too much to lift, too heavy for me to move.

Today is a bad day, and I will face it solo. There is nobody here to hold me, to show me the affection and intimacy that will swallow up these tears of pain. There is nobody here to help me up or down, one or off my couch, in or out of my wheelchair. I do this all alone. I'll tell you, it takes a shitload of courage and strength to keep going in the face of these insurmountable odds. I don't know why I do it, except I see no other way. I just have to keep going, for a little while. Then I will rest.