On Becoming a Patient

“You know you have macular degeneration, don’t you?” It was a statement, not a question—kind, but definite, from the highly recommended retina specialist I’d been referred to. I probably should have realized it a few days earlier during my annual check-up when Dr. D. covered my right eye.

“I can’t even see the chart now!”

“I understand,” she said gently. “I think you should see a retina specialist.” Never underestimate the power of denial, my friend Marybelle tells me. And while I waited to see the great doctor at Ophthalmic Consultants of Boston (OCB), I reassured myself that I might have a detached retina quickly correctible with laser surgery. I wouldn’t have to lie in bed immobile for 30 days the way my mother had 33 years earlier. After all, I had noticed no obvious changes in my vision, only a need for a brighter reading light and an almost imperceptible little white shadowy spot that appeared on the page from time to time.

The large waiting room at OCB was filled with very old patients waiting to see one of the doctors in the offices that ringed the waiting room. Many had canes or walkers. Others leaned on aides or middle-aged “children” who steered them to their seats. Young women in white coats bustled in and out of the various offices. I diverted myself by trying to figure out whether they were nurses, technicians, or doctors.

In the office, I was trying to absorb the doctor’s initial thunderbolt while he explained the two kinds of macular degeneration—wet (left eye) and dry (right eye). I studied the diagram of the huge eye adorning his office wall and tried to picture the leaky blood vessels that had formed behind my newly discovered macula.

There was, at present, no cure, and there was a 50 percent chance that the dry macula degeneration in my good right eye would progress to the wet form. There was a chance that my vision could deteriorate drastically without warning.

I tried to concentrate as he explained the options for treatment. All involved needles in my eye. Frequent injections of macugen, the only FDA approved drug, had slowed the progress of the disease in some patients. Other more promising drugs were available only through trials—some of which he was conducting. My husband Jim and I talked it over, read through the trial protocol and the lengthy statement of “possible but extremely rare side effects including infections in the eye, blindness, seizures, or death.” I signed on for my first trial.

In monthly visits that followed I became fully acquainted with the tedium of the waiting room, where I waited for each step in the rituals of my appointment that stretched out for three hours or more. Having excellent health all my adult life had spoiled me. No surgeries, five normal deliveries, no chronic diseases. At annual check-ups I’d felt smug ticking off the things I didn’t have.

Now three years and two trials later my left eye has become like a familiar, annoying companion who never leaves my side. The bleeding in my left eye was arrested by two injections of Lucentis, and I have good peripheral vision in it, but the scarring to the macula remains. Every day I close my “good” eye to see whether the white blur in central vision of my “bad” eye has miraculously disappeared, the blur that makes it impossible to read or to see the details of a face with that eye.

But the blur remains and nagging questions persist. What if the right eye fails me too? What if I couldn’t drive? What if I couldn’t read the signs and directions in airports, the small print in the tax booklet, the labels in the supermarket? The printed text in whatever form has been my way of accessing information, of negotiating the practical world. What if I couldn’t read?

For me an even more fearsome loss would be to my inner life, the life of imagination. I’ve lived by books every since I devoured Little Women as an 8-year-old. Reading has been a passion, a solace, a way to enter other worlds and other lives. A shared taste in literature is one of the things that brought Jim and me together 58 years ago when we met in graduate school. You might almost say we fell in love talking about our shared affection for E. M. Forster’s novel Howard’s End. During our parallel academic lives and now as members of HILR that conversation has continued—extended to countless other books.

I tell myself that in the larger scheme of things I’m lucky—and I am. I know about books on tape, and I’ll certainly resort to them even though I infinitely prefer to feel the book in my hand and to hear the sound of a writer’s voice unmediated by another’s. I’m not suffering the ravages of chemotherapy or drifting into the no man’s land of Alzheimer’s. I remind myself of all that remains—Mozart, Bach, the promise of spring in the air, the faces of my children and grandchildren safely lodged in memory, enduring friendships, the companionship of a 56-year-old marriage.

But I’ve lost what Louis Auchincloss describes in himself as “a curious sense of immunity,” my improbable fantasy of myself as a tower of strength. A little sliver of vulnerability has lodged permanently in my brain.

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