A few years ago, when I still had a job, there was another part-timer, a woman I'll call Kerri, whom I only saw occasionally when our schedules overlapped. We always enjoyed talking, and when I discovered that the retina of my left eye had torn, the result of my severe nearsightedness, Kerri began to tell me about her husband (I'll call him Ben), whose eye problems were similar to mine, but about ten times worse.
Jim was losing his sight. And he was, understandably, frightened and depressed.
At this point, as Kerri and I started discussing, for the first time, the fraught topic of "disability," she revealed herself to be one of those, what I think of as disapproving doubters. Her first anecdote was about a friend or relative, someone only seen at Thanksgiving, who exhibited "learned helplessness." Always asking for ("demanding"?) help. Always claiming to need more help than Kerri judged was warranted.
If we're being urged nowadays not to be afraid to ask for help, it's people like Kerri who force us back into cautious silence, people whose first reaction to a claim of disability or difficulty is: Are you sure? (Are you really disabled? Do you really need help? Do you really know your own body and abilities?) People who think first of the scammers and the malingerers, the fraudsters and the grifters.
It's the culture, how most of us are raised. Don't burden others. Manage on your own. And never, ever, complain.
Perhaps the last conversation I had with Kerri occurred shortly before the Covid layoffs, as Ben was heading into blindness. (And yes, I know that the visually challenged themselves are the first to say it's not a tragedy.) But the transition from sighted, to impaired, to loss–especially in middle age–can be a terrifying journey. It's not only the problem of accomplishing daily tasks, great as that is, but the loss of pleasures, of reading, and seeing–art and nature and movies and television; the faces of one's family.
Kerri compared Ben's situation to mine, with my deformed hands (and wrists and arms, although people rarely "see" those). "You just do what you can," she said, admiring, since I had rarely spoken of my feelings about it, what appeared to be uncomplaining competence. "You manage, you do the tasks you have to. If things are difficult, you find a way."
Her last comment, as I was throwing out my lunch trash to head back to work: And if you can't play the piano, so what?
And that's why I write.
Because the single biggest deprivation of what the world sees merely as "ugly hands" did not come from tasks and chores, from struggles with jar lids and shoelaces and toothbrushes, frustrating as all that was.
The greatest loss was: playing the piano. It was a desire so deeply embedded in my brain from--birth, I would guess--that by the time I was old enough to see a piano, perhaps age three, I was overwhelmed with the desire to play it. And later, when I was old enough to understand, sickened (heartsick, grief-stricken, soul-crushed) by the realization that I could not, would never be able to.
Squashed by the Monty Python giant foot descending from the clouds.
The sixteen-ton weight.
Like hearing other people having an orgasm, and feeling aroused, and being able (almost) to imagine the sensation of completion--and knowing I will never have that satisfaction.
My theme song: I can't get no…
When Kerri dropped this bombshell on me, I was unable to reply. I was at work, at the end of lunch hour, not thinking about pianos or orgasms, about pleasure and starvation. It was too great a lift.
I left Kerri with the impression that, Yes, she was right; that when you're coming to terms with disability, it's all about the chores; that pining over lost or unattainable pleasures is absurd.
And I think of Ben, and wonder what it's like for him, losing his pleasures–and being told by his loving wife that it doesn't matter.
So that is why I keep at it, writing my autofiction novel-in-progress, The Anger B0mb.
Because it matters more than anything. I don't mean that climate catastrophe and mass extinctions and social justice and income inequality and war and the rise of fascism don't matter, or matter less.
Only that, without pleasure, we die inside. We live in the world of George Orwell's novel 1984, where all pleasure is eliminated or outlawed, where everybody is controlled through torture and pain.
If people can't realize the fundamental pleasures of what their body is wired for, and if no mitigation is found, we won't solve war or poverty or hunger or climate disaster. We won't care.
I will never be able to play the piano, just as Ben (probably) will never again be able to see with his eyes. But by acknowledging the importance of these lost pleasures, we may find substitutes, ones that keep us from despair, from withering away of starvation. For me, I take pleasure where I can: in eating slowly, savoring the textures and flavors, instead of rushing through meals; in deciding which manual tasks are necessary and doing them at my own pace; in playing easy video games that I can control with my "ugly hands;" in writing (typing), the computer keyboard an imperfect but necessary substitute for the unattainable 88; and, yes, in the occasional genuine clitoral orgasm.
Ben may, and I hope will, find pleasure in audiobooks and podcasts, in listening to music or in musical instruments that don't require vision to play, in walks with Kerri in the summer warmth and winter wind, in dancing, and talking and sharing meals with friends.
But Ben and I and all the others will only survive if our need for pleasure is seen as valid and accepted for what it is: our claim to be more than chores-and-tasks bots; to be three-dimensional, with emotional and physical desires that need regular nourishment for us to thrive. To be one of you. One of us, the human species.
And so I write…