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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.

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driving

Writing Sample Part 4 – Surrender

It’s impossible to think about going blind without thinking about loss.  When you have a degenerative disease like RP, the loss comes in unpredictable bursts that steal pleasures and pluck freedom from disappearing fingers.  In the weeks just after my diagnosis, I thought a lot about how my life would change and what blindness would take from me; I was most afraid of losing the ability to read the printed word.

 I have always loved words; the way they can simultaneously smooth and sharpen the page. A life that leaves me unable to see the printed word is unimaginable.  I feel paralyzed by the thought of no longer seeing how the shapes of the words meld and flow.  I wonder what kind of writer I will become when the pages turn dark. Perhaps I will learn to rely solely on the musicality of language; the taste of the words in my mouth and the feel of their vibration on my lips. I am sorrowful when I think of no longer taking the words in with my eyes, but I will read voraciously until the darkness has swallowed them up.

Although the loss of the ability to read was my greatest fear after RP became part of my life, one of the most significant rites of passage in an RPer’s life is giving up driving.  I was a terrible driver, for now obvious reasons, and always felt anxious behind the wheel, but I have definitely felt the loss of freedom since I gave up my car for less convenient forms of transportation.

Because one of the first things that alerted me, and the doctors, to my RP was decreased night vision, the consequential difficulty led me to stop driving after dark 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. In truth, it hadn’t been safe for years:  I had just been lucky.

I had also, in daylight hours, had several run-ins with walls, poles and curbs that seemed to jump out at me from nowhere.  This started 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 responsibility 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 chose to surrender my license and make the rite of passage official; I had no reason to hold onto it when I knew I would never drive again.  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 denial about the gravity of my disease and how it was going to continue to change my life.  I was 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 had always been a lousy driver anyway, so no big deal that I would never drive again.  True statements, but I also started to see how my disease was a burden to the those around me, and how I was going to become less and less practically 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 chose and because of this I became more reclusive.  I didn’t want anyone to have to take care of me.  I was determined to take care of myself.

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 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.  I remember the first months of riding the bus, looking out the window at the enraged faces of the drivers in their cars, and feeling lucky that I got to spend my ride home listening to music, far away from the stresses of road rage and blaring horns.

Surrendering my license ended up saving an important part of who I am, and showed me that my determination means something.  And let’s be honest, L.A. busses are full of stories dying to be told.

Writing Sample Part 3 – Signs

We all look back at our lives, pick them apart and look for clues that would have helped us along the way, told us what was up ahead.  We discover things about ourselves that may have been present or growing since childhood, and inevitably think about the signs we might have missed.

A few months ago, I was going through some old family photos, and I came across a picture that was taken on a beach in Mexico when I was about three years old.  My eyes were squinted against the glare of the sun and I was reaching for my mother’s sunglasses, perched on a rock nearby.  I looked desperate to escape the bright sunlight and it is a look I recognize, a feeling I have experienced for years.  Growing up in California, my family was always going to the beach.  My parents and my siblings loved spending hours in the sun, but I preferred cloudy days.  I was called strange, moody and different, but even then, the sun hurt my eyes.

As I got older, I developed a reputation for being clumsy; I was always tripping and stubbing my toes and knocking things over. I couldn’t hit a softball in P.E. class or catch the ball when I was forced into the outfield.  I appeared careless, un-athletic, lost in day dreams; I didn’t know it then, but my retinas had begun to die a slow death.

I remember an afternoon when I was learning to drive; I was in the car with my mom, and she began shrieking that I was driving too close to the edge of the road and we were going to go off the cliff.  My mom was prone to dramatic expression; there wasn’t really a cliff, just a five-inch drop off the road into the dirt.  She thought I wasn’t paying attention, but actually, I had no idea how close I was to the edge.  I couldn’t see the side of the road.

Into my 20’s I continued to trip and fall and live up to my reputation as either the clumsy day dreamer, or the newer moniker of drunk girl.  I had a friend tell me I was the only 24-year-old she knew who actually fell down and skinned her knees.  I missed curbs, crashed into street lamps and collided with pedestrians racing down the Boston sidewalks to escape the cold.  I thought perhaps my friends were right and  I was drinking too much; I had no idea that the edges of my vision were disappearing.

For years, I nursed the bruises that peppered my skin and laughed along with my friends about my clumsiness.  I chastised myself for being careless and inattentive.  After my RP diagnosis, I became diligent in searching for current markers of my deteriorating vision. I notice how the glare of the sun gets meaner and how once effortless tasks are becoming more difficult.  I feel the light slipping away every time I call out my husband’s name, unable to find him right in front of me.  I feel helpless and terrified as the darkness slowly swallows up the contours of the world.

Hands off the Wheel

A good friend of mine made a great recommendation regarding my blog; she pointed out that people new to my blog may not know that when I refer to Zelda(or Z), I am taking about my white cane. So, in future blog posts, if Zelda is part of the story,  I will make sure to add a note explaining who (what) she is.  Thank you to my friend – you know who you are and I love you!

So, yeah, Zelda is going to be part of this particular post.  You may be thinking, ” oh god, not that bitch Zelda again”, but, unfortunately, Z isn’t going anywhere, no matter how hard I try to get rid of her.

I have been treating Zelda deplorably.  I have ignored her, shunned her and concealed her on a crowded hook.  If I don’t see her, I don’t have to think about her; and if I don’t have to think about her, I can pretend that I can see just like most other people. I am really good at the avoiding and pretending thing.

When I was learning to drive – the second time; a few years after two accidents and a ticket for failing to yield to a pedestrian in a crosswalk (no one was injured) – my Dad took me to an abandoned parking lot to test a theory.  He asked me to just drive around as if I were searching for a parking space and then he randomly shouted out things like: OH MY GOD, A BABY IN THE ROAD or LOOK OUT FOR THOSE NUNS; every single time, my response was to take my hands off the wheel and look away, as if I wasn’t really driving the car.  My instinct definitely veered in the flight direction and I obviously, in some seriously twisted part of my brain, figured if I ignored it, it wasn’t happening.

Of course, it turned out that my accidents were, in large part, due to RP and my limited peripheral vision, but at the time I had no idea that I had RP and that I wasn’t seeing things that fully sighted people would see.  That being said, I still took my hands off the wheel.

I wish I could say that I am one of those people who sees a challenge and jumps in with fearless determination; I am not.  I am, however, incredibly proficient at avoiding the things I can do to make challenging situations a little easier.  I eventually come around to face reality, but then I close my eyes and turn away like an insolent child; I don’t want this fucking problem, disease, etc., and I am not going to deal with it.  I have been doing it with RP for years, so I was bound to treat Zelda with the same dismissive attitude.

As I have said before, and will say a million times, RP is a total mind fuck.  It is purgatory.  It is the gray area covered in fog.  It is a disease that begs to be denied, especially by those who are well versed in denial.  But, RP is pesky and persistent and pops up often to remind me that I am defective.  No matter how much I want to, RP won’t let me take my hands off the wheel.

It doesn’t matter how many coats and hats I pile up on the hook over Zelda, she is in my head.  I have to find a way to see her as an ally, but I am struggling.  I feel the weight of her even when I don’t have her with me.  I went into my mobility training with a positive attitude, but discovered that this is, without question, the most difficult challenge I have faced in my RP journey.

I am having trouble fending off my insolence.  I keep screaming in my head that I don’t want RP and I don’t want the fucking cane, kicking at the reality of my disease and trying to reject it; but, I don’t have a choice, RP isn’t going anywhere.  If I don’t find a way to see Zelda as beneficial, one day, I am going to get seriously hurt.  The thing is, I can’t imagine it hurting more than it already does.

 

 

 

Reflections off Water

My husband and I took a whirlwind journey this weekend to attend a family function and I have to say I wish I could have left my RP at home.

We live in Los Angeles and the event was in San Francisco, so we decided to drive.  It is about a six-hour drive and we like the time together in the car chatting and singing and laughing, but it also means a day spent basically outside and even with sunglasses my eyes protest having to be subjected to so much sun time.  When we have done this drive in the past, I usually get a few hours upon arrival to rest my eyes  in a darkened room, but this time we had to go directly to the event.  The venue was beautiful, with windows facing a lake and sun reflecting off the water through the windows. A totally beautiful nightmare for someone like me.  Sunlight reflecting off water through windows is akin to having lasers beamed directly into the center of my eyes; even with my oversized sunglasses, it hurts like hell.

So, there we were, sitting in the front row closest to the windows, my eyes already feeling sore from the 6 hours in the car, and I am feeling like a full-blown freak because I am the only person in the room who is wearing sunglasses.  Did I mention it was a religious service?  We were there to celebrate my niece’s Bat Mitzvah and between my tattoos and my big Jackie O sunglasses, I don’t think I made a very good impression on the Rabi.

The service itself was absolutely beautiful and I shed many proud Auntie tears, but it was also over two hours long and by the time it concluded, my tears were partly from pride and partly from pain.

If you have ever attended a bat mitzvah (this was my second and my husband’s first), you know that a huge party always follows the lengthy service and as family we were expected to stay.  I knew I wouldn’t be able to make it to the end and started planning the quickest possible exit.  My eyes hurt so much I could barely keep them open.  I decided that a quiet retreat would be the best way to leave, so Joe and I went off as if to take a walk and disappeared into the early evening.

I have to admit I was incredibly relieved to be out of there, away from the pressure of being the dumpy blind black sheep in a family of diamond studded song birds, and away from the assault of sunlight reflecting off water.

Signs

Whenever a person discovers something about themselves as an adult that has been present or growing since childhood, they inevitably think about the signs they may have missed; things that would have tipped them off sooner, given them a clue to the journey ahead.

A few months ago, I was going through some old photos from when I was a small child.  I came across a picture that was taken on a beach in Mexico when I was about three years old.  My eyes were squinted against the glare of the sun and I was reaching for a pair of sunglasses that were perched on a rock nearby.  I looked desperate to escape the bright sunlight and it is a look I recognize.  Growing up in California, my family was always going to the beach and wanting to bask in the sun, but I always preferred the cloudy days.  They all thought I was strange or moody, but even then, the sun actually hurt my eyes.

As I got older, I was called clumsy because I was always tripping and stubbing my toes and knocking things over. I couldn’t hit a softball in P.E. class or catch  the ball when I was forced into the outfield.  I appeared careless, unathletic, always in a day-dream, but I was actually going blind.

When I was learning to drive, I remember being in the car one afternoon with my mom, who began shrieking that I was driving too close to the edge of the road and that we were going to go off the cliff.  My mom was prone to drama and there wasn’t really a cliff, just a five-inch drop off the road into the dirt.  She thought I wasn’t paying attention, but I actually couldn’t see the side of the road.

Into my 20’s I continued to trip and fall and live up to my reputation as either the clumsy day dreamer or the girl who has had too much to drink.  I had a friend tell me I was the only 24-year-old she knew who actually fell down and skinned her knees.  I missed curbs and crashed into street lamps and nursed the bruises that peppered my skin.  I thought perhaps I was drinking too much, but actually the edges of the world were disappearing and I didn’t even know it.

Today, the signs are of things to come rather than pre-cursors to what has arrived.  I wait for the markers of my deteriorating vision, notice how the glare of the sun gets meaner and how once effortless tasks are becoming more difficult.  And some days I am moody.  Some days I am careless.  Some days I dream.  And some days I drink too much.

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