Sep 232013
 

As a disease like inclusion body myositis progresses, it does more than produce the physical changes you expect. It also has a way of taking over your life. It seems that every day I spend more time trying to find solutions to living with IBM than I do actually living. It is like I had just taken the most demanding job imaginable and simply have little time for a personal life.

This may be why I am able to tolerate my current living situation. Even though I am in a very comfortable room with a perfectly large bathroom and am surrounded with just about every assistive device you could think of, it still is not what a normal person would consider ideal. The other residents are nice people, at least the ones who are capable of speaking, but for the most part they are either older than I am by many years or have other issues that prevent forming a personal bond.

About two hours of every day is spent taking care of basic physical needs such as getting up, toileting, bathing, eating, etc. The rest of the time I generally spend at my computer working on the website and blog for Huntington Manor, updating my own blog and my wife’s memorial site, visiting friends on Facebook and posting to the various support groups related to my illness. Every so often I need to tilt my wheelchair back to a horizontal position to help avoid pressure sores and circulation problems and during that time, since I am basically staring at the ceiling or the sky (see video below), I generally focus on meditation. I usually spend one or two hours out of each day looking up information about living arrangements, adaptive equipment, etc., or making phone calls about the same issues. Then there are the doctor visits which usually happen one or two times a week. Even though the appointments themselves are not that long, they involve 8 to 10 miles of wheelchair riding for the round-trips, or even longer bus rides. If there is time left over, my latest Netflix treat awaits.

As I write this, I am not sad or bitter, I am simply amazed by the way I have been so completely taken over by IBM. Up until a year ago, my post-retirement time was more likely to be spent dealing with my wife’s myotonic muscular dystrophy, as it was a disease even more complex and, as we now know, more life-threatening than mine. But that seemed like a worthwhile pursuit and as long as there was hope for making her better, what else would I be doing?

Now here is where this analysis gets a little weird. When I look at the lives other people live, I do not feel envy. if I had to describe what I feel I would say it was puzzlement. Dining out, games, camping, trips to the beach, all the things I can no longer do, I don’t really miss. Somehow I feel like what I am doing is actually entertaining.

My biggest regret about the way I live is that I wish it could be more meaningful. I am sure everyone starts having such feelings as we begin to realize that one of these days will be our last. But I have a unique opportunity since I have almost no obligations other than arranging for the assistance I need to keep me healthy. I keep returning to writing in the hopes that someday I will write something that really has meaning. I am sure that makes me one of about half a billion writers who feel the same yearning.

Unfortunately, making the decsion to “write something meaningful” isn’t enough. I am reminded of the scene in Funny Farm where Chevy Chase is sitting at his typewriter, having left his job in the city to pursue a career as a novelist. He types the title, puts in another sheet of paper, types “Chapter One,” shoves the carriage return (something young writers may not know about) and sits staring at the empty page. For days.

One of the nice things about voice recognition is that an empty screen and listening microphone can’t apply the same pressure. Eventually it will hear some background noise and start typing random words, frequently expletives. For that matter I can just start talking gibberish and Dragon Dictate will not even raise an eyebrow as it spits the words onto the screen.

See what I mean?

A two minute sample of garden meditation.