It all began at a Walmart…

I was diagnosed with an untreatable eye disease called retinitis pigmentosa (RP) when I was thirty-three years old. I’m now fifty-one years old and I am sharing a collection of stories about losing my eyesight. I remember how it felt those first days and weeks of my diagnosis. I had never heard of retinitis pigmentosa until an optometrist at Walmart said to me “it could be a lot of things, but I think you may have retinitis pigmentosa”.

What? Retina what?

I had gone to Walmart specifically to get contact lenses and the Optometrist performed a basic visual field test by holding up a few fingers and asking me “how many”. She noticed I moved my eyes to spot them and said “no, look at my nose and tell me how many fingers am I holding up”? I couldn’t, when I looked straight ahead at her nose, her fingers and hand simply weren’t there.

So, the optometrist recommended I go to a specialist to find out what was causing this blind spot. I was already making excuses like, no I just had an FAA physical, so I can't possibly have anything wrong with my eyes (I was a pilot, more on that later). Within a day or two, I went to see an ophthalmologist at a local laser eye surgery clinic. Keep in mind this was 2003 and laser eye surgery was relatively new and expensive. Looking back I can’t understand how or why I went to the laser eye surgery place? I suppose I thought “these guys must know what they’re doing? they work with lasers — right?” Wrong, this was a pretty big place and very nicely decorated (expensive) and I was in South Florida so I’ll call it “Showy” if that is a word?

After dilating my eyes the doctor and assistant took turns looking into my eyes with magnification. I had no idea what exactly they were looking at then, but now I know they were looking for the textbook indicator of RP which kind of looks like “freckling” of the retina in the early stages of retinitis pigmentosa.

By the way, The retina is the layer of cells lining the back wall inside the eye. This layer senses light and sends signals to the brain so you can see (source -The American Academy of Ophthalmology). Retinitis pigmentosa causes the photoreceptors to die off leaving spots of dark tissue on the retina which in early stages looks like freckling.

So, I’m in the laser eye clinic and the doctor and his assistant are talking back and forth in doctor lingo and it’s freaking scary. The parts of their language I understood, was of agreement that yes, I do have this thing called retinitis pigmentosa. What they did next was shocking in hindsight. They invited every doctor and technician in the building to come and take a look at this specimen of rare eye disease. As I sat in that chair with eyes dilated — person after person coming into the small room to take a look, the feeling of shock and denial came over me.

Over the next coming days and weeks, I found myself at Bascom Palmer eye institute in Miami. I lived about an hour away in Ft Lauderdale at the time and I was told I was fortunate to live so close to such a highly regarded facility. I had appointments lined up for more testing and visits with a retina specialist. This time my girlfriend Dawn would be going with me to ask questions, take notes, etc. Dawn and I had been dating for a couple of years and although we hadn’t made formal plans to marry it was certainly something we talked about a lot! By “a lot” I mean a whole lot. We were both in our early thirties and her career was already well established and mine was just getting off the ground, literally… I had just begun flying Corporate Jets and I was finally starting to earn a decent salary. Dawn worked in the tech industry and earned a fantastic salary and we both wanted kids and more pets. We both wanted the whole family package. Things had been looking great, right up to that visit to Wal-Mart.

At some point in the testing process I had an ERG performed which to my knowledge is the only way to confirm a diagnosis of RP. An ERG is similar to an EKG of your heart, except it’s measuring the electrical activity of your retina. Before the test they had me sit in a dark room for about an hour to allow my eyes to adapt, they let Dawn sit and talk with me. The techs came in and taped my eye lids open and placed contact lenses in my eyes which had wires coming out of them. I remember asking if this was some kind of a new procedure, it seemed like something from a sci-fi movie. I was surprised to learn that they have been performing ERGs since the 1950s. Once I had the contacts in, they had me sit in front of a device that looks a lot like other visual field testing equipment. In layman's terms, it’s a box with a chin rest. Other visual field tests had me pressing a button every time I saw something, with this one I just had to sit there with my head in the box, and eyelids taped open. A series of flashing lights go off for what seemed like way too long, it’s not painful, but definitely uncomfortable.

Dawn and I went back to Bascom Palmer several days later to meet with my doctor and go over all of the results. I forgot to mention that at my visit to Walmart when the Dr said “it could be a lot of things”, she also included the possibility of a brain tumor. So, this trip to Bascom Palmer was going to be life-altering no matter the cause of my vision loss. Something was causing these blind spots and today I was going to find out for sure whether I had RP or not. Dawn was incredibly supportive and positive and emphasized that no matter the outcome we would go through it together.

As we sat across from my doctor, who by the way was very professional all the way through this but never empathetic or compassionate. So, he had a legal pad on his desk and starts asking me questions about my family. What are your parents' names and do they have siblings and what are their names? How about your grandparents and so on… At first, I wasn’t sure where he was going with this line of questioning, I was afraid he was going to say my parents were cousins or something. Of course, that wasn’t what he was getting at, he was writing down my family tree on that legal pad. After I had gone through the names of all of my grandparents, aunts, uncles, cousins, and siblings (I come from an Irish Catholic family, so it’s a pretty big list), he asked; “out of all these family members, which ones are blind”?

“None of them!” I said with certainty.

He went on to tell me the results of my ERG confirmed that I did have retinitis pigmentosa and there was no treatment and no cure. The reason he was asking about my family tree was because RP is typically very dominant in a family. Years later through DNA testing, I learned that my particular RP is very recessive so it may not have appeared in my family for several hundred years. That news came from a genealogist at John’s Hopkins who referred to me as “the lucky one”.

I didn’t want to leave Bascom Palmer without hearing something positive from this Dr who up to this point just seemed completely dead inside. Everything was very matter of fact. So, before leaving I said “there must be something, some kind of treatment, right?”

His reply was a question; “Do you know who Steve Wynn is”?

I replied; “the guy who owns the Bellagio? In Vegas?”

He said: “Steve Wynn has RP and more money than God and there is nothing he can do about it either.”

The next thing I remember was sitting on the kitchen floor crying while I told my parents the news over the phone. They both knew how much flying meant to me, it was my identity. I was proud to say I was a pilot, my parents were proud of me. My dad gave me fatherly advice on how to handle my job which can be summed up with “just be honest with them”. My mom on the other hand was heartbroken for me. I could feel it through the telephone. She was crying and said; “too bad you had to take out all those student loans for flight school.” I said; “Mom, I wouldn’t have traded it for anything”. I still feel that way today. My life as a pilot was just one chapter of my life, I wish it had lasted longer, but it wasn’t meant to be.

I wouldn’t take the controls of an airplane again for 7 years when I flew myself to Blind Rehab School, I’m not kidding. :~}

This article is also posted here: https://hardofseeing.com/it-all-began-at-a-walmart/