Runaway Train

Beware of getting locked into a train of thought without considering other tracks. This happens often to me, where I get an idea, look for a specific outcome, then head down a set of tracks which completely misses other ways of doing things. Some call it tunnel vision.

With ALS, you simply cannot live that way. With ALS, just as with so much of life, the way you planned is not the way it's going to go. Often times, when faced with a challenge, I want to solve it my way, regardless of impact or issue. Then someone comes along, often David, who says "there is a simpler way to do this". Inevitably the simpler, or simplest, way is the best way.

The problem for me is that the simplest way generally includes an innate concession to this disease. I can't do it the way I want, because I am unable to do it the way I want. I can only do what ALS allows me to do. If I can't lift it, I have to ask someone to lift if for me. If I can't work the tools the way I want them to work, I either have to work them a different way or ask someone to work them my way.

The only problem is that I am often home along when I get an idea about a project or a problem. Take towels for example. My towel shelf is a mess, something I clearly attribute to my home care workers. I want it organized in a certain way, where all the towels come off the shelf and are then put back in the proper arrangement. I don't have the energy for that, nor do I see away through on my own.

So I have to wait until the right person comes along and says, "I'll do it, but this way might work better." Maybe I don't need my towels organized in a specific way. Maybe it's just as easy to leave them disorganized. After all, I don't pick them up any more. So if the HCA's are the ones who have to deal with them, it makes little sense to get tunnel vision when it comes to their organization.

There are lots of ways to do things. Some are better than others. The best ones are the ones where I don't have to expend the energy, where I can just let the train make its way down the tracks without me being in control. I don't have to manage everything, even though I really, really, really, really want to.