A Little Thing

One of the things with ALS is that when you see a change for the first time, there is a tendency to dismiss it as a one off thing. You have to learn to tell the difference between a change because of ALS and a change for other reasons. Take this whole "biting my lip and tongue" thing. I have to ask myself, was this just an odditity or is it a real event, a clear change in what is happening to my body.

I have already decided on that one; it is a real, ALS related change. It's been coming for a while, with all the harbingers necessary to tell me that it was eventually going to happen.

This same kind of thing is going on with my ability to get into my truck. For some time I have been noticing an increased difficulty with the transfer from my wheelchair onto my truck lift seat. In the beginning, no matter what the conditions, I easily lifted myself up the 3" gap from my chair to the lift. As time has gone by, this lift has been getting more difficult. The conditions, things like snow on the ground or a slope in the parking lot, impact my ability to make the transfer.

Last night as I was leaving the Cat 'n Fiddle, the problems all came together. Amber, one of the staff, wanted to see the lift system. I am always very happy to show it; the whole thing is very cool to see. I went out to the truck, battled through the snow and ice on the ground, set myself beside the truck, and could not make the transfer. No matter what I did, I could not get enough lift to put myself on the seat,

Amber did her best to help. Alas, in the end, all I could do is yard myself up and over using the steering wheel as a pulling point. I did make the transfer, but in a manner so lacking in elegance as to be embarrassing. Amber had been asking me a number of questions about how ALS affects me and my life. She got a first hand look last night.

Unfortunately all the physical effort from the lifting and pulling convinced my bladder that this was the perfect opportunity to release some stored contents, contents of which I was completely unaware, having gone to the bathroom not 15 minutes earlier. So there I was explaining to Amber that I had to go home right away and change my clothes. Impressive, no?

You just have to get over this stuff. This is life with ALS, the steady decline, the loss of ability, the loss of dignity. It's just a part of the process. The problem is that I must now ask myself the question, "Was the failure to transfer to the lift seat a part of the process, or a one off event?" I have to wait for a while to see if it happens again, but my money is on "a part of the process". After all, that is how this whole process works, a little thing here, a little thing there, and then it's all over.