My First Ten Years
PXE Vision: By and For PXEers
by Pat Manson
My First Ten Years
This past May, I “celebrated” the 10-year anniversary of a most inauspicious occasion, the day I learned I’d become legally blind. Technically, I didn’t actually learn that I’d become legally blind that day. What I did learn was that the acuity in my better eye had dropped to 20/200 (in only 8 months). I certainly didn’t understand the significance of passing that unfortunate milestone. In fact, back in 2002, I didn’t even know what legal blindness was. Furthermore, at the time, I wasn’t thinking big picture or planning for the future. I was scared to death, stuck in the frightening present, and fighting a losing battle to continue working and trying to get through each day. "In fact, back in 2002, I didn't even know what legal blindness was."
Over the next 2 years, I would go on to lose more vision and to give up my career. Moreover, I’d come to learn all about legal blindness. With the luxury of hindsight and a little more time available, I’ve thought a lot lately about those months and the years since, and also about how much in my life has changed, some things readily foreseeable and others not. So I thought I’d share some of those changes and imagine what I would have then expected had I been thinking 10 years ahead.
Vision. My vision is worse, but not dramatically so. A decade later, it’s only reached 20/250. Back then, I was replacing one set of magnifiers with another every month or two. I couldn’t have imagined that decline ending. But it has. I’ve had a few bleeds since I hit 20/250, but they’ve all been in less important retinal real estate. So this would have been a happy surprise.
Overall Health. My overall health is a little worse, too. But it would be unnatural if it were otherwise. I was 48 then and am 59 now, a meaningful difference for PXEers and non-PXEers alike. So no surprise there—unless you count the shock we all experience upon realizing we’re now the same age our parents have always seemed to be.
Besides my vision loss, the only other PXE manifestation to show up in a major way thus far is the skin on my chin and neck. They’ve become, respectively, creased and saggy. Prior to that, I think I looked like a cross between Robert Redford and Mad Men’s Don Draper. Fortunately, I can’t see much of the changes in the mirror. Plus a surprising upside: the attention from women has decreased. Good, it was really bothersome. I suspect some are still trying to make eye contact, but I just can’t tell.
Marriage. My marriage, our marriage, is stronger than it was then. Gerlinde and I are subscribers to the oft-held belief that an external crisis can tear a couple apart or bind it together. There was a little rockiness at the beginning, centered, chiefly, on the fact that I could no longer drive and she did not drive exactly as I had, the latter being, of course, the only sensible way to drive. (Besides, she has a truly lousy sense of direction.) Soon we came to recognize that PXE was our common enemy, that we could only succeed if we worked together. I could not have asked for a kinder, more supportive and tougher teammate. Would I have predicted this? Yes, but perhaps not the degree of the change. Incidentally, Gerlinde swears that my steady affection for her is the result of her forever remaining 48 in my mind’s eye as I usually cannot see her well enough to discover that she now looks, she reports, more and more like her mother.
Work. I am no longer a corporate attorney and business exec. In fact, I don’t work at all now. I had to give all that up and have been, incredibly, on disability for 8½ years. That I could never have foreseen, and accepting that loss has, perhaps, been the most difficult of all the challenges I’ve faced. I still miss much of my former work life—the competition, the intellectual puzzle-solving, the juice and the camaraderie—but not the endless meetings, the endless emails, the pressure. I have to admit that I was one of those deluded people who define themselves by their profession, and I had some difficulty finding a new identity in my post-work years. But, overall, I’d say that I’ve now made the transition. This was an important step because I could not go back. I take some comfort in the fact that I tried like Hell to keep working, leaving nothing on the table, but I simply could not do it. So I guess there would have been 2 surprises: that I stopped work voluntarily and that I came to accept that change.
I should add that no longer working has had some upsides. Several members of my family were ill during this period, and I was able to be more of a caretaker for them. I’ve also been able to reconnect with some old friends that I was losing track of. Finally, I’ve had the time to return big time to 3 of my favorite activities: reading, listening to music and working out.
Personality. I’ve written before how, in order to cope with vision loss, you need to lower your expectations to allow for your new limitations—or you’ll be perpetually angry and frustrated and make those around you miserable. I’ve written, too, that in my former professional life, I was a pretty impatient, driven, take-charge guy. Well, I think I’ve done a pretty good job of dialing myself back, perhaps too good a job, and there were unanticipated and unwelcome consequences of my mini-transformation. After kind of morphing into more of the [what, me worry?, laid-back, que sera, sera] kind of man I needed to become, I discovered that this new attitude wasn’t limited to shrugging off low vision mishaps. Instead, it was pervasive, an almost new me in every category.
A few years ago, one of our sons introduced his girlfriend (now his wife, I’m happy to report) to me, saying, “This is not the man who raised me, the guy I’ve told you about.” Similarly, a friend mentioned the change once in passing, so I pressed him for an explanation. “Put it this way,” he responded. “You don’t always have to pick the restaurant anymore.” Had I really changed that much? Apparently, the answer is yes. Most importantly, my wife says I’ve changed but that I’m nicer, more patient, more understanding. Maybe. I’ll certainly concede that I’m calmer, slower, almost passive sometimes.
So what’s bad about the change? I’m not nearly as productive or efficient as my former self, and it’s not just because of my poor vision. I wish I could conjure up that other fellow at times. When doing our taxes, reading something difficult or organizing a project, I’m not nearly as dispassionately objective, incisive, quick. And when coordinating with or organizing others, I’m no longer particularly bossy or pushy. That may sound like a self-evident good thing, but that’s just not who I used to be. Sometimes, I’m even late now; that was verboten before. Bottom line: I get fewer things done and fewer things done as well as before. But that was the price I had to pay to be able to settle into the new me, a price I would still pay even if I’d known the downside.
Would all of this have been a surprise? Completely. I hadn’t much started my retooling as of this date 10 years ago.
Talking and connections. I talk less than before. Naturally, some of this results from my no longer working and from being mostly housebound. In other words, I now have less to talk about and fewer people to talk with. Some, too, comes from a sense of living in a bubble, feeling like I’m living in the world with and among everyone else, and yet cut off from them because I cannot see well what’s going on nearby. If a conversation is taking place around me, I often can’t determine who’s talking, who agrees or disagrees with what’s just been said or even when I can safely weigh in. The visual clues I used to rely upon are missing. So I talk less.
Some of us with low vision also feel that we’ve lost a degree of intimacy, or at least of connectedness, with others for the simplest of reasons: we can’t make eye contact with others or read their faces. A PXEer, a single guy about my age, complained to me once that he had difficulty asking out women. He’d meet them somewhere, he said, talk with them, but with no ability to read their faces or look into their eyes, he couldn’t tell if they liked him or not. I understand his feeling of isolation. Similarly, I’ve had to resort to asking Gerlinde, “What does your face say?” when we’re having a quarrel. (As though it matters: they’re all apparently my fault.) I do the same with her when we’re having a serious discussion with our sons: “When I said X, what did their expressions say?” I even did the same annoying thing when I was still working. A lawyer I’d supervised for some years had a very expressive face that I counted on when we were planning litigation strategy. It would tell me that she disagreed with me although her words might say otherwise. I would note the look on her face, dig a little further and uncover her actual view. Later, of course, I had to ask her outright what her face was communicating. Weird, I know, but these accommodating souls put up with it.
I couldn’t have anticipated any of this. I was far too preoccupied with figuring out how to review and write contracts and how to memorize the PowerPoint presentations I had to make to be thinking this far ahead.
Dependence and/or Independence. Unless I am at home, I am almost never alone. Because we live in a city without mass transportation, I need to be driven everywhere. Hence, I am now, practically speaking, utterly dependent on others. And those others are family and friends who’ve agreed to drive me somewhere and who, on each trip, often volunteer to do more: help with doors, curbs and the stuff I’m carrying. It’s tempting to accept more of their generous offers than I need. I’m relieved to report that my family tells me that I’m just as independent-natured and -minded (read: stubborn, opinionated, self-sufficient) as before. I think both of these would have been unexpected: that I’d become so practically dependent on others, but that I would be able to maintain most of my emotional independence.
A few smaller things. Not one of the following changes would I have envisioned. Glad they happened, though.
Shaving. I shave in the shower now. A few years ago, I realized that I’d unconsciously given up trying to find my reflection in the mirror while shaving and had taken to doing it by feel. So I transferred the whole operation into the shower, where it’s steamy and wet and therefore easier and where shaving by feel is the only option.
Incidentally, I’ve also learned, unconsciously for the most part, to do a number of tasks by feel: tying my shoes, lining up the little arrows to open a bottle with a child-proof cap, screwing in a light bulb, plugging something into a wall outlet. You do what you’ve gotta do.
Photography. In ways I could never have dreamt, photography has become a critical part of my post-vision loss life. You see, digital photography allows me to see the world I’ve missed, the focused world. If I’m wondering if I need a haircut or want to confirm a son’s unhelpful comment that I’m graying more, I get a family member to take a digital photo of me and then send it to my computer. There I can magnify it and see what others can. Our elder son G.P. was married this past Spring. It was a big affair with lots of events over several months. Of course, I attended most of them (thankfully skipping the traditional girls-only events), but my understanding of who was there, who said what, who sat with whom, who had lost weight, etc. was limited because it was all a blur. But the thousands of photos (really!) allowed me to revisit every occasion and belatedly put the pieces together. Similarly, we recently returned from a long-delayed anniversary trip where we visited many historic sites, old churches and museums.
I took lots of pictures and couldn’t wait to get home to truly see what I’d only sorta seen. Digital cameras focus themselves automatically; I can just point and shoot. Of the many vacation shots I took, the percentage of keepers wasn’t high, but my purpose wasn’t to create a professional-looking album but rather to complete the images I’d partially observed earlier.
Audio. As I noted in my most recent column, “Books for PXEers,” after years of struggle and incompetence, I’ve mastered the skill of reading audiobooks, and can finally enjoy them. They’ll certainly never replace book books, but they’re close. Back in 2002, my only exposure to audiobooks had been a couple in the car on long trips, so the important role they now play in my life would have been totally unexpected. Today, they’re CDs or, better yet, downloaded from the internet, both playable on a pocket-sized device I can use while emptying the dishwasher or working in the yard. Really good readers, often well-known performers, now do the reading. And, finally, due to their increased popularity, audiobooks are now produced for a much larger portion of new books. Ten years ago, it was hard to find much selection, and they were mostly cassettes read by the authors, perhaps gifted writers, but not good readers.
Video. Movies and live TV (other than sports with the helpful replays) are out for me. They’re too damned blurry, and they don’t come with a pause button. So it’s DVDs and video on demand for me, for us. I say “us” because I regularly subject my family to a torturous video ordeal. We’ve got a big flat-screen TV, but I still need to be practically on top of it and centered to see it. The other unfortunate viewers sit behind and to the sides of me, surely not where they’d prefer. Then we watch the show du jour haltingly, with me barking, “Pause!” and then “Who said that?” or “What does her face say?” We get through it and still manage to enjoy ourselves, though during longer movies, they’ve been known to resort to drink. They must love me.
Unique seating arrangement in Manson family room
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It’s been a mixed bag, for sure. Of course, a decade with legal blindness would, generally, be less happy than a decade without such fate. My first decade was no exception. But it wasn’t too bad and could have been far worse. Some uncharacteristic flexibility on my part and lots of technological innovation combined to help me adapt. I believe the hardest part is behind me and expect the second 10 years to be much easier. We’ll see.