One of the things that people don't understand about disability is the profound psychological changes it causes.

I was seeing a therapist when I was first disabled, and after a year or two, I mentioned some of these things to him. He said, "Oh, yeah," and shrugged his shoulders. "Everybody goes through that." I wanted to throttle the bastard. And you didn't think to mention that to me?

And I had a better introduction to disability than many people had, having lived with a wife who spent the better part of two decades dying of an incurable disease. I saw what had happened to her, and yet it hit me by surprise when the same things started happening to me. Hey, I'm not dying! Except that we all are, I guess.

And Now It's Blondie's Turn

And watching Blondie adjust to her disability, it's as if it were the third stanza of the same disability dance. I see her going through the same things I went through, and I'm trying to help her transition, but my memory isn't all that great, and I don't know what to tell her about the things that are just now sinking in for her. Maybe that's why nobody mentioned those things to me, because they couldn't.

There are two parts to any disability. One is that inability to do what you used to do, what you want to do, what you damned well ought to be able to do, what you have to do. Those things vary from day to day, or even sometimes from hour to hour.

At 10 this morning, I couldn't reach down and pick up the pint of jelly that fell out of the refrigerator. I left it there, just lying on its side on the floor. At 11 this morning, I was able to bend down and coax it into my hand, not easily, but I did it. At 12, I tried to put on my shoes, and I couldn't, and I couldn't reach them with either hand, either. At 12:15, it worked. Part of the problem is the lack of range of motion in my right hip, the thing that makes me a gimp; the other part is the stiffness brought about by arthritis, and that arthritis comes and goes, almost on a minute-by-minute basis.

Labeling The Label

The other part of the disability is The Label. Blondie used to get so mad at me. When people would ask me what I did - a natural question in a society when your occupation defines your caste - I'd tell them that I'm a government agent, that I'm instrumental to keeping the economy growing smoothly. They'd ask for details, for obvious reasons, and I would explain that the gummint pays me to stay the fuck out of the workforce so I don't screw things up. I thought it was self-deprecating humor. Blondie said it was self-deprecating, but not humorous, that I was deflecting, and I needed to have more respect for myself. Lately, though, Blondie's been telling people that she's a gummint agent, vital to the recovery of the world economy....

The other part of The Label - admitting to yourself that you're disabled - is that Blondie's almost as old right now as her parents were when they died. She's openly talking about what I should do when I become a widower, and what she intends to do when she becomes a widow. It's rather annoying to me. Three of my four grandparents and all eight of my great-grandparents were in their late 90s when they died. The exception, my grandfather, died of disease in his early 30s, but his identical twin lived to be 98. I don't intend to die tomorrow, and it never entered my mind that this wife wouldn't live to her late 90s. I don't know that I'd have gotten involved with her had I known; it was awfully damned hard on me when Em died, and I don't want to go through that again. Kinda late to unring that bell, though.

Death and disability aren't the same thing, of course, but The Label profoundly affects how people treat you. Blondie and I went shopping today, and while looking through the freezer chests, she met another shopper who announced, "Excuse me, I've been having strokes lately." Blondie was flabberghasted. "You, too? I have been having strokes lately, too. And the same sorta thing happened last week with a neighbor from across the street. We thought they were stuck-up, because they never acknowledged our existence, but it turns out he's almost totally blind, and she's senile, and it takes the two of them working together to attend to the affairs of daily living.

Romantic? Or Pathetic?

Frankly, I alternate between thinking that it's awfully romantic, the two of them caring for each other, and thinking it's awfully pathetic, a really shitty way to have to live. Mama used to talk of the futility of two drunks, hanging onto each other for support. Often, she was speaking metaphorically, and I was one of the metaphoric drunks she pitied for their foolishness, but here was a couple forced into that situation by circumstance beyond their control, unlike my former situations, forced upon me by own my poor judgment.

It took me a long time before I could say or write "I am a gimp" without cringing. At this point, I don't shy away from that label. It's not my fault, my reasoning goes, and even if it was my fault, the federal gummint says I can demand reasonable accommodation to my needs. I do assert my needs, not just for myself, but for many other disabled individuals who are less willing to be an asshole in order to advance society. I have the self-confidence to step forward and assert myself. Most of the newly disabled are afraid to do that; they don't think they are deserving. And many of the well-established disabled are never able to speak in defense of themselves.

Life As A Superhero

So I not only wear the label of Gimp, but the label of Asshole as well, because I see myself as a D.C. Comics Superhero, a guy who fights for the rights of the disabled, for the benefit of society at large, because the cost of reasonable accomodation is, by definition, reasonable, while the contributions made by the disabled can be enormous.

I don't think Blondie will ever be able to wear that Asshole label herself. As long as I live, I will have to fight for her, which is not exactly a burden; she's worth it.

You know how earlier, how I mentioned that some days are better than others? Today, I made bread, which is something I haven't done for a couple of years. Back in the 1970s, there was a period of about five years where I made all my own bread. I made a hearty, nutritious hearth bread, a light rye flavored with honey, and a lot of my meals consisted of fresh produce, my homemade bread, my homemade yogurt, and old-fashioned peanut butter, the kind of peanut butter made from nothing but peanuts and salt.

She Thought They Were Wonderful

Blondie was complaining about the bread she's been buying, and she asked me if I could make her some whole-wheat bread. I don't particularly care for the flavor of whole-wheat bread, but that's what I made. It was light, and a little on the sweet side, and she thought the loaves were wonderful. There's an art to making bread, and since I was out of practice, I was flabberghasted that the loaves turned out as well as they did.

This was also the first bread I'd made with a dough-hook mixer. A couple of years ago, I got a "deal" on a KitchenAid mixer. Prior to that, I'd always mixed and kneaded the bread by hand. Whew! It's a real labor-saver. I gave up making bread because my arthritis was so bad, but the KitchenAid makes it easy enough that I think I'll be able to do this on a regular basis.

Some days are better than others, but one of the things therapists tell us is that we need to get into the habit of doing things on bad days, because doing things helps turn bad days into good days.

And who knows? Maybe if Blondie and I do things together, perhaps that will reprogram the wiring she got in her genes, the ones that have the "stop" programmed in just a few years from now. Stranger things have happened.

Other Bloggers On Related Topics:
disability - genetics - hearth bread - homemade bread - honey - jelly - KitchenAid - labels - peanut butter - rye - strokes - whole wheat - yogurt