Eyes Wide Shut

On gratitude and blindness experiments gone awry

Lately I’ve felt the pull to return to writing more essays and stories — in this case, a true story, of yesterday morning’s eye doctor appointment.

If you’re new around here and need context, I have retinitis pigmentosa, a rare degenerative eye disease (read more HERE) and I’m a US Army veteran (read more HERE).

Due to a variety of reasons, I need a new cornea. So yesterday morning I went to see yet another eye doctor (my fourth specialist — so far) and at this point I’m pretty familiar with the routine.

I’d never met Dr. McKee before, but I was surprised at two things: First, how young he was — I always expect my doctors to be old white guys in lab coats (this despite the fact that three out of the four of my eye doctors are women who look like they could easily host their own daytime talk show).

Second, he looked exactly like a Latino US Marine Corps vet I met earlier this month in Las Vegas, a guy who wants to start a business using land nav skills to teach leadership. Same Top-Gun-II mustache and all.

Doctor visits are stressful for everyone, and though I like to think I’m better at them than most people, I’m probably not. Usually, I spend the hours before and then during just trying to keep my brain from making a big deal about it.

It reminds me of when I flew cross country with my almost-one-year-old son in my lap. I spent the entire flight waving an assortment of books, snacks, and plastic dinosaurs in front of his face to keep him from realizing that his current situation actually kind of sucked. In the doctor’s office, distracting my brain involves me waving my phone in front of my face. That, and petting my guide dog (which no one else is allowed to do, which is comforting because I like nothing more than to feel special, and having a guide dog is nothing if not special).?

Every eye appointment I’ve ever been to (and I have been to a lot) involves me staring into very expensive machines and not blinking while lights flash in my eyes. This visit was no different, though this time they wanted to see my cornea, not my retina. So I stared, I held still, I breathed and tried hard to be present and note my emotions, just like my meditation app says to do. Anxious, worried, annoyed, bored all marched forth.

Then we switched rooms, which we did three times during this visit, which is also another hallmark of eye doctor visits (especially the initial ones). First the intake room, then the testing room, and finally the exam room.

In that third room, McKee gave me drops to dilate my eyes (he actually asked me if it was okay, and I was shocked because no doctor or tech had ever asked me that before — though since the appointment would be over if I declined, I say yes). Afterward, he and the tech left Mike and me alone in the exam room while the drops took effect.

Except I really need to go to the bathroom. For these eye appointment mornings, which happen every three months or so, I love bringing my fancy coconut-creamer coffee with me. Deep down I am a child and I like having a special treat to steel my nerves when I have to do hard things, like have bright lights or steroid injections forced directly into my eyeballs. But these special coffees end up being pretty inconvenient because eventually, I have to go to the bathroom. Since there’s no one to ask if we can leave, we decide to just make a break for it (rebels!).

On the way to the bathroom, I came to an odd (in hindsight) conclusion: that the dilating drops will only work when exposed to dark, so I should probably keep my eyes closed. Then, an even odder idea: Hey, while I’m at it, why not practice being totally blind??

It’s worth noting here that 10 minutes earlier the tech administered a variety of vision tests (you know, the ones where you read letters off a chart), but the last one was a peripheral vision test. Not surprisingly, I failed it — miserably (one of the hallmarks of retinitis pigmentosa is tunnel vision). She held her hand out to one side while I covered one eye and stared at her nose. She just stared back at me. I didn’t know what to do other than say, “If you’re doing something with your hands, I can’t see it.” She’d drop her hands then apparently raise one again. “How about now?” Nope. “Now?” Nope. “How about now?” Nope, nope, nope. So it’s well established that I have no peripheral vision. But thankfully my central vision is pretty good — all ten degrees of it (most people have around 90 degrees).?

So on the trip to the bathroom, I thought, what if I shut that down too, and put my guide dog to the test, just for funsies?

Everything was going fairly well until I left the bathroom stall with my eyes squeezed shut, thinking I knew where I was going. So I didn’t grab my dog’s harness right away. Also, I was in kind of a hurry, which always ends badly for me when my vision is involved, so it shouldn’t have been that much of a surprise when I slammed my forehead against a drywall corner separating the stalls from the sink. But I was very surprised!

I crumpled with shock, quickly followed by pain. How much pain? I wondered, checking in with myself. Oh, quite a bit! Enough to cry? Let me check…wait…yes. Definitely enough to cry.?

I held my face and started to weep. After I stood there for a moment I decided, fuck it, I’m not going to wash my hands. A less-than-ideal solution, but I couldn't muster the resolve to do otherwise — I’d find some hand sanitizer in the exam room. I stumbled outside the bathroom and waited for my husband to finish up in the men’s restroom. I heard him washing his hands while I cried and willed him through the walls to hurry up, but it took forever. Eventually he emerged, and I said, my face covered with my hands and voice cracking, “I had my eyes closed and I ran into the wall.” Which is a ridiculous thing for anyone other than a five-year-old to announce, but there I was.

When I lifted my hands, he could see exactly where I hit my forehead. He was sufficiently sympathetic (isn’t that all any of us want in the world?) and so there was nothing left to do but head back to the exam room.

As I took my seat, I wanted to stop crying, which I mostly did, but I also wanted to cry more. Why? Thinking about it, I understood that cracking my head on a public restroom wall was a culminating event in a series of events that I did not even realize were happening. I thought back to the previous night when I lay in bed, worrying about today’s appointment. Then I thought about the four eye surgeries I had undergone in the past three years. Then I thought back even further to all the times I sat in doctors' offices, waiting waiting waiting, dreading the bad news that I knew was coming. All those thoughts pooled inside me, threatening to spill over.

Usually, in these situations I admonish myself to hold it together, no need to make everyone uncomfortable by bursting into tears. But yesterday I told myself, “You can cry all you want as soon — as this appointment is over.” And weirdly, it worked. I asked Mike to read me something I’d pulled up on my phone; this trick always makes me feel better.

Dr. McKee came back and after finishing his examination, explained that I did indeed need a cornea transplant. He would replace a small part of my cornea with a thin sheet of cells from a “recently deceased cadaver” (I guess that’s better than a long-deceased cadaver?) and after the surgery, I would need to lay on my back for two days and three nights straight.

He explained everything calmly and clearly, but not too slowly (I hate when they go too slow like I’m some sort of child). This was another surprise, and I felt a flash of deep gratitude for an eye doctor who was capable of giving me good surprises (or at least not bad ones).

We left the appointment and as I got into the car, I wished for nothing more than an ice pack for my throbbing head. My eye surgery won’t be for another five months, which I’m actually relieved about, because I have several veteran-related adventures planned in the next few months, like going hunting in South Dakota, skiing in Aspen and teaching a two-hour workshop on creative leadership in Nashville.

As I think about these things that I get to do, all of them while legally blind, I am somehow able to pick up on the thread of gratitude from earlier and follow it further. It leads to gratitude for the gift of a thin sheet of cells from a recently deceased cadaver (someone who likely isn’t even dead yet!), for husbands who drive me to doctor appointments, for sugar-free coconut creamer and the soft tufts of fur ringing the neck of my guide dog. My gratitude, when I remember to practice it, always begins and/or ends with either my sufficiently-sympathetic husband and/or my amazing dog.

Being told that I have yet another eye surgery in my future isn’t ideal, but if I’m willing to step back, breathe and pay attention, I notice that it’s what comes after the surgery that’s so great. After all, being able to continue to read books, cook Thanksgiving dinners, ski and hunt and go to conferences — all are the very best things in life. Guess I better keep my eyes open so I don’t miss them.

Originally published on my Substack.