PXE Vision: By and For PXEers
by Pat Manson
There may not be a right way, but there certainly is a wrong way to handle yourself when your eyes are beginning to go, when they´re first “in play.” How you deal with that change will, not to be too dramatic, define the rest of your life. It was during my very first visit to my retinologist that I came to understand that there are two distinct paths the PXEer first experiencing vision loss can follow.
One path is the one chosen by William, whose experiences I read about in a delightful newsletter for the AMD community while sitting in the waiting room before my appointment. William´s passion for more than 30 years, I read, had been Japanese gardening. He had created a beautiful, large garden, an outdoor paradise, featuring paths and foot bridges, sculpture, waterfalls and streams. His greatest love, though, was koi ponds—lovely but very high maintenance. (Koi are ornamental Asian carp that can reach 2-3 feet; their ponds require aeration and filtration. Some subspecies can be quite valuable.) William bought and sold koi as commodities like stocks or baseball cards. When his AMD took hold, his koi population was up to 200 fish. The care for them was a monumental undertaking.
His altered circumstances, however, made all that unmanageable. He simply couldn´t keep up with the work required by the garden he´d built. But he didn´t quit. He lowered his expectations and adapted. He took a long, sober look at what was possible and that´s just what he did. He reduced his koi population to 65 fish. He began using larger nets, making fish-catching easier. He switched to dwarf shrubs, which require little pruning, since he no longer used power tools. Similarly, William now sported a hand-held magnifier on a cord around his neck whenever he was in his garden. That way, it was always with him when he needed it. Finally, he enlisted the help of his wife more often, getting her, for example, to describe the condition of the fish so that he could prescribe any treatment needed. All in all, there´d been changes, but it was still his garden.
This type of adaptation, in my opinion, is the key to making life after substantial vision loss full and sustaining. William chose to focus on what was possible rather than on what he´d lost, and then he adapted his practices to ensure success at that new level. William´s revised life is an example of the right way to deal with vision loss.
I finished the article, my spirits lifted a little by William´s inspiring example. At that point, my vision had dropped only to 20/40, and reading the article was not too challenging. Minutes later, the bottom dropped out for me. I was called back, met my retinologist for the first time and learned my fate. The rest, as they say, is history.
My retinologist found that I was having an active bleed and prescribed a PDT treatment, the first of 13 I would have over the next 2+ years. Scared and depressed, I trudged down the hall to the laser room. Waiting for me there was Jerri (not her real name), an ophthalmological RN who prepared me for the treatment. That prep takes some time, so Jerri and I had a chance to get acquainted. It turned out that she needed to talk. Her husband, Joseph (again, a pseudonym), a physician in his upper 60´s, was in the throes of AMD; his eyes were in play. Unfortunately, the path he´d chosen could not have been more unlike William´s.
Joseph was clearly in agony. His vision was dropping like a rock, and his life, as he knew it, was coming apart. It all started with his work. He was in the process of essentially walking away from his medical practice. He could no longer do the detail work that had been part of his job, so he was giving up on it altogether. He´d not talked with his partners about re-allocating the work to keep him employed. Jerri thought they might be willing to accommodate him, but he hadn´t even considered it.
Joseph had also been an avid reader, but he could no longer read unaided. He had tried with limited success to use the slightly magnified face shield that he´d used in his medical practice, but that was as far as he´d go. So he stopped trying. He´d bought no CCTV, no hand-held magnifiers, no software, no audiobooks. He´d not investigated any of these potentially helpful devices, never been to a low vision center. He was familiar with the shield; he wasn´t willing to try anything new.
He was also in full-blown denial about his driving. He was continuing to drive without any concession to the new reality although Jerri suspected that he´d no longer qualify with his state´s DMV. He had now become a menace. He´d driven into the side of their house twice while trying to pull into the garage. Moreover, riding with Joseph—and he insisted on driving, of course—had become scary, Jerri reported.
Why was Joseph doing this to himself—and to Jerri? Because for Joseph, it was all or nothing. If he couldn´t do it—whatever it was—exactly as he´d done it before, he wouldn´t bother. This was the new life he´d chosen for them. In the meantime, he had consigned himself to his study, staring angrily out at the world he believed had forsaken him. Unless he turned things around, his life was over.
I may have been new to all this, but I knew that this, unquestionably, was the wrong way.
I listened to the rest of Jerri´s sad story. Then I had the PDT treatment and, with my wife Gerlinde at the wheel (a change that would become a permanent condition within a few weeks), we drove home. All the way, I thought about William and Joseph, my spirits buoyed upwards by William, haunted by Joseph. Now that I knew what likely awaited me, I couldn´t help but wonder which of these men I would more closely emulate.
Fast forward—incredibly—6 years, and much has changed for me. In the world before anti-VEGF drugs, my vision, as feared, dropped hard, just like Joseph´s. I no longer work, I´m more or less house-bound and I´m on disability. I´ve done a decent job—a B or B+, I suppose, of exiting the workplace on my own terms, lining up LTD and SSDI, but I probably deserve only a fair grade—a D maybe—in tackling low vision aids. I´ve gotten a CCTV and hand-held magnifiers and am competent at using them but remain curiously resistant to learning how to use ZoomText, JAWS, etc. I also haven´t worked hard enough to master reading by audiobook, a learned skill, at least for me. I can´t explain these gaps, but I know they´re holding me back.
I often think about those 2 men, hoping that I´m living up to William´s example, fearful of backsliding into becoming like Joseph. Overall, though, I think I´m closer to William´s example than to Joseph´s. On that long, painful 2001 drive back home, that´s what I´d hoped for.
How about you: have you chosen to be more like William or more like Joseph? Only you can answer that question. And you know what the right answer should be.