Love and Other Challenges

Early Signs

Michael: I remember driving back from Yosemite with you - I'm sure this was over twenty years ago. It was after dark, I'd been driving for quite a while, and was really tired. I pulled over and you amiably jumped into the driver's seat of my old van. But after maybe ten minutes you complained that lately you'd been having trouble seeing at night, and felt it was unsafe to continue driving. I remember grudgingly getting back behind the wheel, thinking you were malingering, or at least exaggerating a very minor problem. Was that around the time that you first began to notice some difficulty with night vision?

Joel: Not really. I remember stumbling around in the woods at night as a kid at summer camp, feeling mortified as I realized that the others were navigating quite confidently by the beams of their flashlights. Still, the deficiency never seemed quite dramatic enough to deter me from driving at night, until I was in my mid-twenties. I still felt safe enough in town, amidst the glow of city lights and street lamps, but that sense of security disappeared when I found myself driving along the ocean in fog, or in the deep, impenetrable blackness of the highway home from Yosemite that night, with you.
Michael: How did you learn that your difficulty seeing couldn't be corrected with glasses?

Joel: I'd worn glasses since about first grade, just to correct for nearsightedness. It was completely by accident that I found out about the RP. I Got a killer case of conjunctivitis, you know, "pink eye," went to the U.C. San Francisco Medical Center's Ophthalmology clinic just for that, and the doctor noticed possible indications of the disease on my retinas. He sent me for a round of diagnostic tests as soon as my infection had cleared up. The tests were strange and a little surreal. When I consulted with him about the tests results, that's when I knew.

Michael: I'm curious about that process, if you feel okay talking about it. Not so much the mechanics of the testing, but more what you went through emotionally when you heard bad things, and then worse things, about your eyesight. I would think that getting news like that would be not just painful, but also unbelievable, as though they were talking about somebody else.

Joel: You said it, Michael. The diagnosis of RP and its intimations of future blindness so startled and dismayed me that I pushed it almost completely out of consciousness, within days. I did study the brochures explaining what little was understood about the disease then (mid-70's) and illustrated with approximations of how my sight would deteriorate. And I told my girlfriend, Susan, whose father was a doctor and who knew to take such things seriously. Regardless, I found some way to discourage her continuing interest, and soon managed to forget where I'd filed those brochures or, more accurately, hidden them from myself. Textbook denial.
Michael: Was there a particular event or series of events that forced you to acknowledge that your vision was irreversibly diminished? I know (from some conversations we had back then) you weren't walking around in a state of absolute denial, but I wonder if you remember a point in time where a shift occurred--where you began to see yourself as someone with a serious disability.
Joel: Yes, I acknowledged having RP. But, as you conjectured, I actually felt as if this diagnosis had befallen someone else, and carried on. The reality closed in gradually at first: Night driving became impossibly harrowing, even around town, and then I realized I frequently missed things others could see, in daylight. Then my newly-prescribed reading glasses failed to restore the printed word to clarity, and an eye exam revealed that my visual fields were diminished and broken up. But the final cosmic notification came when I nearly ran over a jaywalking kid. That's when I understood I had crossed over into the realm of permanent, irrefutable disability.
Michael: I know you've written elsewhere about that accident, and won't ask you to rehash the circumstances. (See: Joel's Journal article, The Day I Quit Driving ) But I'm wondering what the experience of, essentially, categorizing (or recategorizing) yourself was like, with its implications in so many areas of your life.
Joel: The re-categorization, as you put it, was brutal. Relinquishing my car threatened to crush all hope. It wasn't just the loss of practical independence, but the loss of a sense of prospects, of the right to keep dreaming in a very American way that the future might yet, against all evidence, still hold every reward of work and comfort of love that an uncertain middle-aged late bloomer might yearn to attain. "What does not change / is the will to change," goes the reassuring, exhorting line in Charles Olson's "The Kingfishers," a line I still hold close to me and try to believe is true. But the onslaught of gloomy thoughts that dominated my mood then boded poorly. The main thought, the one that stained the rest like death, was that I was now, unarguably, disabled, with all the most incapacitating implications that can attach to the word.
Michael: I remember talking to you shortly after the accident with the pedestrian, and you were clearly shaken. But I did not grasp what a profound realization that event had forced on you, or how devastating it was. No doubt my own density and denial played a part: I have to admit that most of the time there's something like a ten year lag between the actual state of your vision and how I imagine it. The fact that we live in different cities doesn't help, but I'm sure some of it is my own inability to acknowledge the extent and implications of your disability.
Joel: I think a big reason for that gap really is denial, actually. No matter what I explain, or even what I write. While sympathetic strangers and acquaintances, and readers who don't know me tend to overestimate the extent of my blindness and incapacity, my intimate friends, by comparison, persistently underestimate both. When we're out together, I often have to remind them to guide me through a dark restaurant, or implore them to be more verbal when I sense they've forgotten I can't see their facial expressions, or even see their faces at all, straight on. Sometimes their discomfiture is really palpable. I think we don't want to believe things like this can happen to those we care for, both from heartfelt pity as well as because our friends' injuries and illnesses remind us of our own fragility, of limitation, of death. So, unconsciously, we switch on cognitive governors to slow the rate of our comprehension. And why not, I ask you.

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