Living with ALS

How am I going to cope?


I know that those of us who have been diagnosed with ALS are all supposed to go along with the Party Line that it is a truly horrific and terrifying disease and that we are simultaneously heroic and stoic to bravely live such an unending nightmare and – left unsaid, of course – we are therefore intensely deserving of lots of support and sympathy. Now, far be it from me to suggest otherwise, but strip away all the sentimental emotion for a moment and look at it coldly from my point of view.

In the foreseeable future I’m going to be sitting around a lot more. In a really comfortable expensive chair. I won’t have to work. I’ll be able to think a lot. Listen to music. Write. Read. Surf the internet. Watch as much TV as I like. I’ll never ever again have to interrupt what I’m doing to have a pee. Or get up at night to have to go to the bathroom. Oh, and I’ll never be hungry or thirsty again. In fact, I can even eat and drink while I’m asleep.

Meanwhile, all the boring mundane routine of day-to-day existence will be handled by others.

OK, I’m convinced.

Every single bit of my continued miserable existence is going to be absolutely horrible!