Renewal For A Year

This morning I was sitting on my bed putting on my jeans. It's something I do almost every day; the odd day I go without pants. In order to put my left leg into my jeans, I lifted my foot by grabbing my compression sock at the top and pulling. Once I got my leg up onto the bed, my centre of gravity had shifted and I tipped over backwards. No harm, no foul. I was on the bed. I just sat back up and started over.

It's not a big thing, just another reminder of the loss of core muscles I have experienced, never mind that I have lost all muscle tone from basically my waist down. It's these little things, though, which can make you really tired of this horrible disease, the small changes, the incessant changes. I have to be careful not to let them dominate my life.

In that spirit, I did something yesterday which I think is, if not brave, at least defiant in the face of the terrible odds I have to deal with this year. I am in my fifth year post diagnosis, a marker by which 80% of people diagnosed at the same time as me will have died. I am growing steadily weaker. My world is decreasing in size and scope almost daily. So I did something to declare that I will not go quietly into that good night.

I renewed the insurance on my truck for a year. I also renewed my home insurance for a year. A full year.

This might not seem like much to normal people. We do it all the time. I, on the other hand, have to contemplate whether or not I will still be able to drive in as little as 6 months, let alone a year. I have to wonder if I will even be alive in a year. It's no big deal for most people; they are not compelled by illness to think that way. The money is a big deal, $1048 for my truck insurance and $308 for my home insurance. If I find I cannot drive or if I die, my insurance can be cancelled and whatever money remains will be refunded.

The statement is not about the money. The statement is all about renewing for a full year. It says something about my approach, my view on things. Yes, I am likely to die soon. No, I will not stop saying "Fuck You" to this illness. It's hard to keep living with ALS. That's the very reason I renewed for a year. I might not make it, but it gives me a goal, a target. It says that somewhere in my deep being, I still believe that I will be here in a year, still living, still going.