Now You See It, Now I Don't

Growing up I was regular reader of the X-Men and related comics in the Marvel universe. For the uninitiated, the X-Men (even the women were X-Men) all have genetic mutations giving them a super power. Some had the ability to shoot laser blasts, others had super strength, the ability to become invisible, the ability to release enough energy to cause an explosion.

I’m sure I wasn’t alone in wondering what kind of power I would have if I’d had a genetic mutation.

As it turns out, I do have a genetic mutation that’s given me super powers including tunnel vision, color blindness, and disappearing peripheral vision. In short, my super power is watching my eyesight disappear.

Did not see that coming.

It all started about six years ago. Driving at night suddenly became more difficult. I went to have my eyes checked. My doctor determined I had “impaired contrast sensitivity.” In other words, unless something contrasted with its surroundings, I wouldn’t see it.

This really came into play while driving. If it was dark, or dusk, or raining, or the street was covered in shadows, or some combination, the number of things I wouldn’t see was plentiful: potholes, the curb, lane markers, people in dark clothes, cars coming at me.

It was called “low-vision.” That diagnosis alone would have been enough to end my driving career. But like on many a late-night infomercial, wait, there’s more.

I was also developing color blindness. I see a lot of gray these days. More importantly, my peripheral vision – the ability to see things on your left and right while  looking straight ahead – was shrinking. When you’re driving, knowing what’s happening to your sides is important. Seeing only straight ahead doesn’t cut it.

So, at 51 years old, after a ten years of driving, my life behind the wheel was over. To be honest, driving had never been something I enjoyed; so it didn’t seem like a huge loss. It also gave cars in parking garages with slim spaces a new level of protection from having to share their paint job with my car.

The doctors said that there wasn’t just one cause to my eyesight problems. They pointed to a series of diagnoses including diabetic retinopathy, damage to my cones, damage to the rods, laser treatments I’d undergone several years before; they referred to that as “laser creep.”

Multiple reasons for my vision problems meant there wasn’t one simple course of treatment beyond common sense things like protect my eyes by wearing a hat and sunglasses and keeping my blood sugar under control. The lack of a concrete answer wasn’t ideal but as things seemed stable; the “stay the course” answer seemed to make sense.

That is, until it didn’t. My peripheral vision continued declining. The tunnel was closing.

Back in for more exams, the first was the Visual Field Test, which maps where you can see and where you can’t. What I felt was happening was backed up by the test results. The problem was they still couldn’t figure out exactly why it was happening.

I was referred to the genetic specialists. That meant more tests and pictures, my favorite of which was being in a pitch black room for 45 minutes and then to a room where my eyelids were kept open and bright lights flashed at me. I don’t think I’ll ever watch A Clockwork Orange again without being triggered.

Looking at the pictures and test results, they could see the damage, they could see that things had become worse since just a few months before. What they couldn’t see was what was causing the damage.

They took a swab and sent it off to a specialized genetics lab that examines the 361 or so genes that play a role in eyesight.

A few weeks later, I was on the phone with the genetics counselor. She told me that the lab had discovered a mutation of the RHO gene. That gene gives the eyes the instructions for making a protein called rhodopsin, which is needed for normal vision.

If the gene has a mutation, the instructions aren’t given; declining eyesight is the result and, according to the National Library of Medicine, can lead to “tunnel vision and ultimately blindness in many affected individuals.”

The good news is that scientists are actively studying the RHO gene and its tendency to mutate; they have already discovered more than 150 different mutations. aware of the RHO gene and its tendency to mutate.

The flip side is that with so many different mutations, scientists have their microscopes full as they try to figure things out. That means there’s nothing in the pipeline to stop the progression to… “ultimately blindness.”

The genetics counselor gave me a referral to the Oregon Commission for the Blind, where I would be given Orientation and Mobility training, another way of saying on a very simple level, learning to use a white cane or long cane to get around. The counselor, who knew I had a trip coming up to New York stressed the importance of getting the training started as quickly as possible.

The Commision is made up of very dedicated workers, all overloaded. Orientation and Mobility training is more than just using a white cane or a long cane. As they explain on their website,

“Our curriculum includes use of a long cane, orientation skills, intersection analysis and crossing, route planning, bus travel, problem solving, and use of electronic aids. As the client gains confidence we branch out allowing the individual to fulfill their daily functional travel needs, whether it's going to the grocery store, visiting friends, or going to work. Each lesson continues to build on the skills and confidence of previous lessons.”

The complete training takes place over the equivalent of three college semesters. Over about two hours, I received a drop in the bucket of what I’ll need to know as the tunnels through which I currently see continue to constrict.

Reading that, you might think my brief training was frustrating and depressing because of how little I learned. The opposite is true.

The long cane is empowering. Walking where others are is a challenge since I don’t see them coming up behind me or even walking toward me if they’re not directly in my line of sight. Now, people see the cane and know to give me a wide berth. It’s like being a truck on the highway with a “wide load” sign. And it’s not because of my girth.

My trainer at the commission referred to the cane as “an identifier;” it lets people know that for their safety and mine, take a step to the side.

I’m still relatively early in the process of adapting to this new phase of my life. I keep thinking of when my kidneys failed and I started dialysis. The dialysis clinic was filled with long faces on people whose demeanor showed they’d clearly given up, their bodies sinking into the recliners which made the middle seat in coach seem comfortable.

There was even a person who regularly ordered a pizza and two liter bottle of Pepsi. People were short-tempered and, too often, mean, even abusive to the techs who were helping them.

I vowed immediately that I was not going to be one of those people. I knew that dialysis was going to suck; six hours three times a week strapped to a needles that took blood out of my body, ran it through a machines that cleaned it and returned to my body. Over and over again.

It was an exhausting, demoralizing procedure. BUT… it was keeping me alive. I vowed to be in as good a mood as possible while I was there, to treat the techs who were helping keep alive with nothing but respect. I know I wasn’t perfect but for the five and a half years before I got my kidney transplant, I did my damndest.

That’s how I’m trying to approach my loss of sight.

There are some differences. After a lifetime of reading there’s a good chance that will become a memory. My love of reading is as much a love of the feel of the book, the feel of the newspaper as it is about the information I’m taking in. My parents will tell you that as a child, I’d sit on the front stoop in my underwear and tee shirt reading the paper before I brought it in.

Pretty sure that’s when I decided I wanted to be a reporter. Why my parents couldn’t figure that out and get me a fedora to go with my “pajamas” is beyond me,

Recently, I’ve fallen in love with audiobooks, though there are some truly awful narrators out there. When I started listening, I saw an inherent problem that I am positive I’m not the first to have encountered. Reading, I like to allow my mind, my imagination to give voice to the characters, to paint the scenery. Sure, it’s the author’s world but it’s my imagination helping bring that world to life.

With an audiobook, it’s someone else doing the work and I wasn’t sure I wanted a third voice getting between the author and myself. Good narrators don’t seem intrusive. Bad narrators make you curse them, curse audiobooks. Fortunately, there are plenty of good ones out there: Meryl Street reading Ann Patchett, Calvin Trillin reading himself; same with George Saunders and Nick Offerman. If you’ve never listened to Offerman, do so. Now. You will feel relaxed..

Then there was the issue of my own library of books. For as long as I can remember, I’ve loved surrounding myself with books. The ability to go to my shelves, pick out a title and, after a few pages, find myself elsewhere, has always been soothing. The question now, are they worth keeping if I can’t read them, if I can’t even see them?

I’ve decided that I’ve loved my books, we’ve had a very good relationship that has spanned decades. I’m proud of the collection I’ve built which includes things like a first edition of The Front Page signed by Hecht and MacArthur. Signed books by Philip Roth, Tom Wolfe, Pete Hamill, Meyer Berger, Deborah Eisenberg, Anne Tyler. Well, so many, some might say too many.

After not nearly as much thought as I’d thought I’d need, I decided It’s time to say goodbye, to let others enjoy them. I’ve started listing a bunch on eBay, plan to give others away. Don’t worry.I’m not giving them all away. I’m losing my sight not my mind.

I’m also discovering the use of technologies that help me read – and write – on my computer. Some of it’s not perfect but every little bit helps. Another thing that’s changed is my desire to see movies in the theater. With my declining field of vision, I can’t see enough of the big screen to appreciate it. So, as much as I hate to disappoint Christopher Nolan, I saw Oppenheimer on my television. For what it’s worth, Mr. Nolan, it was pretty damn good. Well-done, sir.

I now spend a lot of time looking at pictures, doing my best to get the images firmly in my mind; there’s so much I want to remember, so much I want to able to “see” without “seeing.”

Sunrises and sunsets are already pretty much relegated to memory. Pictures of my wife and all the places we’ve been together, pictures of our wedding, of family, my parents, my brother, his wife and kids, my brother-in-law, his wife and kids, Mr. Met and Lady Met (from 1969) sitting on a shelf above my desk; trying to build a large, slide show in my head from which I’ll be able to pull images.

Life ain’t perfect. There are many who have it far worse so why wallow?

Here’s to moving forward.