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Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.

Month

July 2010

Surender

One of the most significant rites of passage in an RPer’s life is surrendering the driving license.  I was a terrible driver who never liked being behind the wheel much anyway, but living in Los Angeles, I have definitely felt the loss of the freedom a car can bring.  In LA, it is assumed that you drive and when it is revealed that you don’t, the information is often met with horror, disbelief and lots of, “how can you can possibly survive in this city without a car?”  It is hard, but when something like RP comes into your life, you learn that you are capable of so much more than you ever imagined.

Because one of the first things that alerted me and the doctors to my RP was decreased night vision, the consequential difficulty of night driving led me to stop driving after dark almost immediately following my diagnosis. The combination of the darkness and the glaring lights of oncoming cars made it so I simply couldn’t see well enough to drive safely.  I had also, over the years, had several run-ins with walls, poles and curbs that seemed to literally jump out at me from the side.  This started my serious contemplation of whether I should continue driving at all.  Walls and curbs only hurt my car, but what if it was a child or an animal that I didn’t see?  I couldn’t bear the consequence of hurting someone just because I didn’t want to give up my car.  So, about seven months after my diagnosis, I gave up driving altogether.

When I decided to give up driving, I made the choice to surrender my driving license and make the rite of passage an official one.  I had no reason to hold onto my license when I knew I would never drive again, and I needed to make it real.  I suppose it was my way of dealing with the loss head on, not allowing myself to live in any denial about my disease and how it was going to continue to change my life.  I felt empowered because I took charge of the decision and I knew I was doing the right and responsible thing.  I felt the loss, but it was intermingled with a sense of relief.

It the first couple of months without my car, I joked about how lucky I was that I never had to be the designated driver and how I was never a good driver anyway, so no big deal that I would never drive again.  True statements, but I also began to see how my disease was going to burden the lives of those around me and how I was going to become less and less useful as the years and the RP progressed.  I hated listening to my family agonize over who would drive me home after a family dinner, knowing how tired they all were.  I hated knowing that once I arrived somewhere, I was stuck until someone else was ready to leave; I had lost the freedom to come and go as I liked and because of this I became more and more reclusive.  I didn’t want anyone to have to take care of me, because I knew I could take care of myself.

Of course my family never complained and I knew that they were just trying to make things easier for me, but I needed to find a way to assert my independence.  I had always had a fiercely independent nature and I wasn’t going to let the RP rob me of that.  So I learned the ins and outs of the LA transport system, which is no small feat given that it is the worst in the country, and the bus became my car.  I can remember the first months of riding the bus, looking out the window and seeing the enraged faces of the drivers in their cars, feeling lucky that I got to spend my ride home reading or listening to music, far away from the stresses of road rage and blaring horns. The surrender, I suppose, had ended up saving an important part of who I am and showed me that I have real strength.

I have become a good consumer of public transport and I also walk a lot (another unheard of activity in Los Angeles), but I still get plenty of rides in real cars and I will always be grateful for all the help I get from friends and loved ones.  And let’s be honest, the bus in LA…….oh the stories I can tell.

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Good News

So I went for my visual field and the doctor told me that my peripheral vision is holding and has been stable for the past five years.  This is really wonderful news and I feel so lucky.  It reminds me to be grateful for what I have and will hopefully put me onto a patch of positive land for a while.

Waiting for my Sentence

It has been three years since my last visual field test and in three days I have an appointment with my specialist and the big white dome.  The last time my fields were tested, I had about twenty degrees of peripheral vision and my test results were almost unchanged from the previous test two years earlier.  This was great news.  I don’t expect the same news this time around, but you never really know; RP is such an unpredictable animal.

I have been to the RP specialist many times since my diagnosis eight years ago, but every time I go I feel as if I am waiting to be sentenced all over again, to hear how much closer I have come to darkness and how much more vision I have lost.  You would think I would know, given that I live with the damn disease every day, but in the day-to-day you adapt to slow changes. Only the visual field can tell exactly how much I actually see.

The other day, I was looking at a copy of my very first visual field test, when my fields were at about thirty degrees; two years later they were between twenty and twenty-five.  My central vision at the time, without glasses, was 20/40, now it is 20/200.  It scares the crap out of me when I look at the picture progressively; in the blink of the proverbial eye,  I went from being a normal woman who needed glasses for driving, to a legally blind woman who would never drive again.  Some days it still seems impossible, like this reality I have been handed cannot truly be mine.

Invisible Disability

At this point in my RP journey, I am sans mobility devices;  no white cane, no seeing eye dog, no glaringly obvious low vision contraptions.  I still have about 20 degrees of peripheral vision in each eye; and yet I am legally blind..  So how does one navigate the world when they live in the space between sighted and blind? When they are afflicted with what I call an invisible disability? Carefully, with frustration, and at times with humor.

Some days, I feel as if my RP is easy to forget, to push out into the dusty edges.  If you saw me, you would never know I have a disability; I have learned to navigate the world so well that unless someone actually knows that I have RP, it appears as if I am just as sighted as the next person; until I trip over the curb or bump into someone walking past me who any normally sighted person would have seen.  And because I appear normally sighted, these bumps and trips are often met with anger from the affronted party.  I have been called clumsy and stupid and occasionally bitch.  Ok, so I may be a bitch, sometimes, but I am not stupid or clumsy……..I am blind. I am afflicted with a disability that is invisible to the world and the world is becoming invisible to me.

The world is becoming invisible;  sounds scary and sometimes I feel impossibly afraid, but most of the time I just continue to muddle my way through, laughing at the spills along the way.  Simply put, when you have RP, you don’t know what you don’t see because you can’t see it.  Of course, intellectually, there is an understanding that your view of the world is limited and hopefully this keeps you hyper aware and in constant scanning mode,  but the dark edges aren’t an entity, they are just nothing.  It is as if the edges of the world have been erased.

City of Devils

Los Angeles for the nearly blind is hardly the city of angels; more like a metropolis of devilish trickery and accidents waiting to happen.

In a city where your car defines you, riding the so called metro is practically unheard of, and so the city treats public transport as an afterthought at best. On most days, you are better off walking, but pedestrians are invisible to most LA drivers, so you run the risk of being mowed down by some star fucker trying to get to their next audition.  When you have RP you are constantly scanning your environment for potential bumps trips and falls; in Los Angeles you have to add the constant lookout for 2 ton metal weapons called hummers that yes, can sneak up out of nowhere when your peripheral vision has almost completely deteriorated.  I used to be a runner, but had to stop running on the streets because I came close to being hit by cars too many times.  So the RP takes the driving, then the running, and leaves the walking but at considerable risk.

The walking risks aren’t only from cars, but also from people.  Los Angeles is a heavily populated city; crowded with narcissism , violence and greed.  It’s residents are often untrusting and untrustworthy and like any big city, it is best to keep your eyes peeled for miscreants.  As you can imagine, keeping your eyes peeled is tricky when you have limited use of them. Now, I will say that over the years I have become pretty adept at scanning my environment, but even I have moments of mind wandering when I am out walking. On more than one occasion I have bumped into people and been scowled at, screamed at and physically threatened.  ” I didn’t fucking see you”, I want to scream.  But I always just apologize and walk on.  There are no giveaways to my blindness; it, like me, is invisible.

Tattooed

I am a forty one year old woman, always lived a bit on the edge and I have a lot of tattoos.  I started getting really heavily tattooed when I was in my middle to late thirties, after my RP diagnosis.  You may wonder what the hell getting tattooed has to do with going blind, or maybe why the hell  a blind chick would want to get tattooed when she won’t even be able to see all the gorgeous artwork. I have discovered that for me, getting tattooed is definitely connected to having RP.  It is about taking control over a body that is betraying me; about exercising the choice to mark and beautify my skin because I have no choices when it comes to my vision.  Being tattooed empowers me and makes me happy.  It is a brightness, literally, in a world that is going dark.

Dark Days

So I told myself when I started this blog that I wasn’t going to be  maudlin or depressive, but the truth is that when you have a disease like RP, it is impossible to avoid the dark days (literally and figuratively).  When I was first diagnosed, I allowed myself a very brief period of sadness and anger and then went along with my life as if I was made of granite, all bright and shiny and tough; although I had never been particularly bright and shiny prior to my diagnosis.  I prided myself on how well I dealt with the news that I was going blind and joked with people about how  I would get to have one of those cool dogs one day.  I stepped far away from my feelings of fear, because they were truly too much to handle.  The whole thing felt like a dream, like something I wasn’t really connected to; I went through the motions of dealing with the RP, but I didn’t really deal with it.

Now, 8 years into it, I know that the dealing with it is both constant and comes in waves.  The constant part is the day to day; the not being able to drive or go outside without sunglasses;having to live in a house with the curtains always closed and not having the freedom to go out at night alone; these daily ways that independence is stripped away.  The waves are full of the uncertainty about the future and the fear of just how dark the days may become.

The waves are crashing on my life right now, but they will recede and I know, like always, I will shake off the gloom and see the true fortunes of my life again.

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