RP on Film

by Michael F. Eusanio Merrick, New York

There are several acknowledged series of emotional stages one must traverse when confronted with loss, whether that loss be either physical or emotional. Regrettably, there seems to be a noticeable dearth of options when the aforementioned loss is slow, deliberate and absolutely unavoidable, such as in the case of retinitis pigmentosa. The loss which RP extracts can, as in my case, take decades, which forces one to be in a perpetual state of adaptation, a process that more often than not causes me fits. No sooner is a visual revision made, accepted and entered into my daily life than it is rendered obsolete, which simply causes another parallel process of loss.

The adaptations I choose to make, in order to lead as normal an existence as possible, are the core of what is a daily reality check reminder. I do not have a normal life and each new day will bring with it an almost imperceptible smaller view of the world in which I choose to travel. In short, the changes I made daily with a 50-degree field of vision are no longer viable today. A field of vision totaling just about 18 degrees is what I have left at my disposal, just 18 degrees to use to wander within a full 180 degree sighted world.

When folks discover just how limited my vision has become, they invariably ask about the potential impacts it has caused in my normal day-to-day activities. As I am not one inherently gifted to provide long, drawn-out answers when a perfectly short quip can suffice, I tell them that beyond the obvious, if I want to go do something, I just "KISS" the vision related issues and then, off I go. The obvious, of course, includes no longer driving, piloting aircraft or working part-time as a diamond cutter. The "KISS" part of it is just an acronym for "keep it simple, silly." OK, that last "S" can be, and usually is, substituted with a more salty adjective. Keeping it simple is, in fact, the best way I have found to deal with the slow but deliberate theft of my sight. Keeping it simple, for me, is a matter of breaking down any potential activity where my limited eyesight could be problematic into its most basic components and finding the easiest solutions to those individual segments.

Take a night out at the movies. I really enjoy going to the movies and the entire theatrical experience. I am a firm believer in that when one sense is in any way diminished or compromised, the other senses naturally become more acute. My remaining and thus heightened senses now tell me that popcorn smells better in a theater, tastes better when eaten in the dark and with the advent of surround sound, there is an awful lot to hear with today's films, sometimes with subtleties many folks tend to miss.

Now, many have asked, how does somebody with such a narrow field of vision and with light acclimation at a speed akin to molasses going uphill, actually enjoy what is for the most part an exercise in visible acuity? Fair question, and easy enough to answer; I just "KISS" it. Since walking into any darkened room, especially one full of strangers, is never a positive RP experience. Issue one becomes how to avoid that particular scenario. "KISS"-ing it means I'm usually first in line. I never really can be late for a movie; of course I've also never missed a preview, commercial or those friendly reminders to visit the snack bar. Next question usually is: "How does a legally blind individual handle the dietary aspects of the movie-going experience?"

Obviously, load up before going into the theater, and never volunteer to go during the movie; such an excursion will inevitably end up as a particularly embarrassing trip into an innocent and unsuspecting lap. Now sending someone else out to secure proper snacks is not necessarily as unfair as it might seem. The forager will not have to concern himself with finding his way in the dark, wandering aimlessly about in hopes that he might be seen and thus dodging the need to whisper embarrassingly up and down the aisles in search of his seat. The aforementioned Good Samaritan will be able to avoid such a scenario all because I "KISS"-ed away another potential problem.

Due to my diminishing viable field of vision, I've needed to sit in the back row of every theater I've gone to in the last ten years. This seating position allows me to see more of the screen while diminishing my need to keep my eyes moving. I don't see more than a solid quarter of the screen, so my eyes are constantly in motion, taking visual "snapshots" of the screen and mentally assembling them to create an internal image of what is on the screen. The closer I sit to the screen, the less I see directly, and the more "snapshots" my eyes have to make, hence the more my brain has to construct. I have to do that enough just to walk around the mall; going to the movies shouldn't have to be that much work. In addition, in what I consider to be an interesting twist of fate, at 6 feet 4 inches and change, the need for leg room necessitates the need to always grab the aisle seat. Putting all of these minor trivialities together assures one thing relative to the movie-going experience; I'm always right next to the exit.

While I understand that utilizing a resource such as the "KISS" theory for something as insignificant as going to a movie may not be the cure for my failing vision, I believe it goes a long way toward curing the problem of finding a process for the loss. RP does not need to be a life altering limitation, but needs to be addressed as merely an accommodation to be made. For me, it becomes an easy equation: be overwhelmed and stay inside or find a way, every day, to "KISS" the troubles away.

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