I have a condition called Retinitis Pigmentosa, commonly referred to as RP. It is a degenerative retina disease that leaves the lucky winners of this particular genetic lottery permanently and totally blind. RP is a rare(ish) genetic disorder where the light sensitive cells of the retina are destroyed or simply cease to function causing night blindness, then peripheral vision loss, and finally blindness.
As with any disease that leaves its victim blind, it is a horrible thing to contend with. Adding insult to injury is the lack of a cure so no sooner do you receive the diagnoses then you are forced to come to terms with your fate. If dark humor is your thing then you will appreciate that under the headings for “Treatment” on the National Institute of Health website is simply a link to a resource for living with Low Vision. Even considering the lack of treatment options, what makes RP particularly insidious is its speed — or lack thereof — it is ever present, slow, and methodical in its deconstruction of the retina.
Timelines vary from patient to patient, but the outcomes do not. In my case it can be reasonably estimated that I will be totally blind sometime in the next 25 years. Nothing to do but wait.
These two little orbs on the front of my face were going to make me reevaluate the world and my purpose in it.
They say you don’t appreciate something until its gone and the eyes are no different. It is easy as someone with decent vision to take the importance of vision for granted. And that is OK. But when you are staring down the barrel of blindness you spend every waking moment that your eyes are open ruminating on the fate you have been dealt.
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I had a career as a police officer and then one day I didn’t. In mid-2017 I began to see a small blurry patch in my right eye. Like someone had wiped a small bit of Vaseline on then lens of a movie camera leaving a smudge on the edge of the frame, enough to be annoying but not really ruin the experience. As with anything eye related given my family’s poor history when it comes to vision, I was encouraged to have it checked out by a specialist. If there are decisions that can change the entire trajectory of one’s life, this was one of them, and I’m still not sure if it is a good one or a bad one.
I made an appointment with my eye doctor. Figuring perhaps there was a scratch or other issue that could be quickly addressed. Unfortunately, this was not the case. The smudge was a cataract, a tiny one, that could be safely left alone for decades. But the eye doctor in doing his exam saw the tell-tale signs of RP hitting him right in the face. Small black speckles on the back of the eye indicating dead retina tissue.
I remember him stepping away from me with a look of concern, kind of like when you show up to meet your soon to be ex-girlfriend at a bar and she has the “we have to talk face”.
“Do you have trouble seeing at night” he asked.
Of course, I did. It had been going on for years, my often comical inability to navigate in the dark, but I always assumed this was just a part of getting older. I would regularly get teased about the excessive use of my flashlight while working midnight patrol shifts. I regularly stumbled around my house at night which, again, was written off as the vagaries of nearing forty.
With this answer, his concerned look got more… concerned. His girlfriend stare wasn’t just breaking up with me, it was cheating on me. He held up some fingers and slid them around my field of vision while he observed my eye’s reactions to them moving in and out of what I would learn are the massive gaps in my peripheral vision. Not only was she cheating, it was with my best friend.
The exam ended with him laying out what he believed was a moderately advanced case of RP. He advised me to see a retina specialist and start considering a new line of work.
I was told I could never work as a cop again, a fifteen-year career gone in the blink of an eye. The reasoning was sound but catastrophic. It was a massive liability having someone like me driving a police car let alone walking around with a gun. A liability no one was willing to shoulder.
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This began the nagging awareness of the disease. Every time I would bump into a wall or be confronted with an odd stare as someone held out their hand for a handshake just outside my field of vision, I am reminded of my fate.
These two little orbs on the front of my face were going to make me reevaluate the world and my purpose in it.
Imagine knowing the exact date you were going to lose a loved one and that date is decades away. How that would change how you spend your time with that person? Would you shrink away from them to mute the pain that was sure to come? For the latter, of course you wouldn’t because that’s just life; just because you know an exact date doesn’t really mean anything.
It would be a sad existence if we avoided personal connections because one day those people will be gone. As to the former, it is a crash course on living a good life and relishing every moment because no one stays alive forever and you should act, and love, accordingly.<
In the years since I have yet to find a way to ignore the obvious. It is like having something wrong with your fingers or your ass. There is no real way to avoid using them, so you just have to deal with it. In learning to “deal with it” I have learned to act on the valuable life lessons above. In addition, I am learning lessons about acceptance of fate and not letting self-pity consume me. I am slowly learning to apply these lessons across every aspect of daily life. I tell myself that this is not going to kill me, change me, sure, but nothing fatal. I more thoroughly enjoy every moment with my kids. And I am compiling a list of “blind hobbies” that will bring joy and satisfaction to life without vision — currently it is learning to play a piano.
The biggest breakthrough for me has been the realization that there is a world of people without vision that live happy productive lives, their lives don’t look like mine or the one I had, but they are full and complete, nonetheless.
I will be OK. The cheating girlfriend that is the wispy tissue coating the back of my eyeballs is forgiven and life will go on. In the meantime, I hope that my experience can give others perspective on dealing with the more catastrophic ups-and-downs of life in general.
Rullo is a lawyer and former Marine who worked for many years as a police officer in Montclair. He ran unsuccessfully for the Verona Board of Education in 2018. This post first appeared on Medium and is reprinted here with the author’s permission.
