What's Likely

Insomnia seems to be fairly common amongst PALS; I hear about it on a regular basis. Contrapunctually, PALS need more sleep and suffer from high levels of exhaustion. So even though we try to sleep more, even though many of us are tired all the time, we have trouble sleeping at nights. Last night was a good example of why and how this can happen, and how it impacts my life.

Last night wasn't a bad night. In fact it was fairly good. After going to bed at 11:00 PM, having seen the Calgary Flames lose yet another hockey game, I settled in and tried to sleep. It didn't happen, so out came one of the many books I keep by my bedside just for this purpose. The current tome is a massive dissertation on the factors driving Europe towards the Great War; an evaluation of social, military and political conditions which beset the key players between 1890 and 1914. Oddly enough, material like this, dense and convoluted as it can be, is not always sufficiently hypnagogic. Last night was no exception; I read until around midnight, at which point I once again sought the land of slumber.

Then it started; the thinking, the wondering if, the worrying about, the planning for. My mind started latching onto things, mentally masticating madly on each, pulverizing my thoughts with a combination of intellectual and emotional cannonades, all while pretending that some pale imitation of sleep would eventually arrive within. I was awake and my mind was active.

I thought about how ALS has screwed me royally, beyond measure. There, in my bed, by myself, having spent a whole day without human contact, I thought about how alone I am at what is most certainly the most difficult time of my life. I wondered if, by some miracle, I might meet someone who would love me for who I was, where I was, how I was; it's not likely. I contemplated how my career had come grinding to a halt, stolen from me by ALS, and if, by some miracle, I might find a way to work again without wearing my body into further loss; it's not likely. I worried about my financial situation, driven down by the absence of income and the demands of living with ALS, things like renovations, wheelchairs, truck modifications, and wondered if I should buy a lottery ticket. I might win, I might get lucky; after all, I am due for some luck, right? It's not likely.

What is likely as that my life will continue until it stops. I will continue to be alone against this disease even though many are with me. I will work, as best I can, but never in the way I could in the past, never doing the fascinating and interesting kinds of projects I did before ALS. I will have to find a way to survive on a severely reduced income, a pension of small numbers, having lost the last 10 years of my working life. ALS will continue and then it will be done with me. This is what is likely.