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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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degenerative disease

The Flip Side

Ironically, given that this is National Poetry Month, this post is not about poetry (they can’t all be), and it may not be particularly poetic.  I just finished and submitted one of the most personal poems I have ever written, and although I am thrilled that it is the month of celebrating poetry, and I am reading it voraciously, I need to take a couple of days away from writing it.

I recently had what I now call ( thanks to Katrin),  a “sucks to be blind” day.  I need them every once in a while; I got through it, I always do, and I emerged from it on the flip side of what blindness and RP have brought into my life.

I have read a lot of blog posts, written by visually impaired writers, about the benefits of being blind.  I always scoffed at them.  What could possibly be beneficial about having a disease that is causing you to lose the one thing that pretty much everyone is terrified to lose?  I thought it was total bullshit.  I was wrong.
Continue reading “The Flip Side”

A Guest in Someone Else’s Home

When I discovered Steve’s blog, MSich Chronicles, I was an instant fan, of Steve and of his writing.  So, you can imagine how thrilled I was when Steve asked if I would write a guest post for his blog.  This is my first foray into guest posting and it is a real honor to be asked to be a guest writer in another’s virtual writing home. Thank you Steve for putting your trust in me.

It’s Right in Front of You

I was 33 when Dr. Heckenlively told me I was going blind.   After dropping the bomb, he took a vial of my blood to, as he so eloquently put it, “rule out syphilis”,  gave me a list of vitamins that might slow the progression of my disease, and sent me on my way. I felt like I had been punched, like I was lying prostrate on the floor and couldn’t breathe.  I was overwhelmed, felt clueless and afraid.  I had no idea what RP was going to do to my life.

When I first heard about RP, it was from a TV show, and a million miles away from my reality.  The TV program talked about RP being genetic and introduced families with multiple people affected by the disease; the first time it was suggested that I might have it, I ignored it because no one in my family even wore glasses, except me.  I soon learned that RP is most often genetic, but not always; there are a handful of us that are the sole proprietors of RP in our families, and in my case, I was completely unprepared for it.

I did my share of online research in the months before my diagnosis, but a lot of it was about the genetic aspects of RP; this gave me a false hope that I didn’t have it.  I read countless simplified descriptions of RP symptoms: Night blindness, loss of peripheral vision and eventually central vision, resulting in total blindness.   I am not a particularly sciencey (yes, I know that isn’t a word) person, but I will try to throw a little bit in here.  Basically, the retinas are made up of 2 kinds of cells (photoreceptors), called rods and cones.  The rods are responsible for low light and night vision, while the cones are responsible for color and detail.  There are way more rods than cones, and the rods are the ones that begin to degenerate first in a disease like RP; that is why we experience night blindness and a loss of peripheral vision.  I am sure this is a very rudimentary explanation, but hopefully you get the sciencey picture.

When most of us think about peripheral vision, we think about stuff that is seen way off to the side, or out of the proverbial corner of the eye.  The truth is, because peripheral vision is dictated by the rods and the rods are pretty plentiful, peripheral vision is actually most of our vision.  It is what you see all around you, not just way off to the side.

About six months after my diagnosis, I remember looking for a coin purse that I had dropped on the ground; I was looking all around, repositioning myself, but I couldn’t find it. The person I was with was perplexed and said, “it’s right in front of you.” The thing is, that phrase, “It’s right in front of you,” means nothing to someone with RP.  When you have RP, right in front of you can shift and change and disappear completely. It can seem to an observer that I am looking right at something, but if my eyes are directed just slightly to the side of whatever it is I am looking for, it may as well be a grain of sand in the ocean. Peripheral vision is huge and complex.

I have searched for my husband in our apartment, walking past his desk 10 times, and it turns out he has been sitting there all along.  When my dogs are standing at my feet waiting to have their harnesses put on for a walk, I have to scan the area several times to locate both of them.  In a restaurant, I never see the waiter trying to hand me a  menu, and glasses of water seem to materialize out of thin air.  If I drop something on the ground, I often have to ask for help to find it. RP comes with so many challenges that I could never have imagined, but I am learning to be more patient; to take the time I need to find things and not allow my frustrations to take control.

I am sure that I leave stuff out that people might be curious about, and I welcome curiosity, so please don’t hesitate to ask questions.

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The Light Conundrum

One of the first signs of RP is night blindness. The retinas are responsible for registering and responding to light, so when you have RP and your retinal cells are dying, they can’t tell your pupils to contract or expand according to the amount of light in the room. For example, most people walk into a dark movie theater and, at first, can’t see much, but in a few minutes their eyes adjust; RP eyes don’t adjust.

My first experience with night blindness happened not long before my RP diagnosis.  I had been in a bookstore for hours, day had become night, and my car was parked on a side street a couple of blocks away.  The first part of my walk was on a busy, well lit and heavily trafficked street, but when I turned the corner onto a darkened side street, the sidewalk in front of me disappeared.  It was terrifying.  It was like walking into shadows and not being able to escape.  Eventually, I walked carefully toward the light from a street lamp about a block away, and found my car.  It can sometimes be hard to understand, but another writer with RP, (Ryan Knighton) described it perfectly; he said that he could see the lights, but not what they were meant to illuminate.

That night, the night the sidewalk disappeared, I was freaked out, but I thought I just needed new glasses; I had no idea that I had RP.  I also had more than twice the amount of healthy retinal cells than I have now, so my retinas worked a lot better and the night blindness happened in brief patches.  I got in my car that night and drove home, but I began to notice that I was having increased difficulty driving at night.  It wasn’t just the darkness, it was also the lights.

On the flip side of night blindness, there is light sensitivity. Just like the retinas don’t respond to things getting darker, they also don’t respond to things getting brighter. When most people walk outside into a super sunny day, their pupils will contract to protect their eyes from the light; RP eyes let all the light in.  For me, light sensitivity has always been a bigger problem than night blindness.  I call it light (as in, man, that is a bright light)  blindness with spikes.  That shit hurts.  You know when you get your eyes dilated and any little bit of light feels like knives in your eyes?  That is pretty much how I feel all of the time.  I can’t go outside without sunglasses and a big hat.  Occasionally, I will be rebellious and leave my hat behind, but the minute a hint of sun blasts through the top or sides of my sunglasses, I am totally blind and in pain.  And, it isn’t just sunlight, it is any bright light.  I can remember coming home from work, after a day under fluorescent lights, and collapsing on my couch, in tears, because my eyes hurt so much. I can’t read for long periods of time on any device that is back lit, because the light is too hard on my eyes; there are some days when I have just used my eyes too much and I pay for it the next day. Basically, sun and bright lights are my enemies.  Give me an overcast day full of rain, and I am a happy girl.

I have talked to other people with RP who don’t have the level of light sensitivity that I do, and those whose night blindness is much worse than mine.  I think it is important for me to stress that every case of RP is different; we experience symptoms in different ways and the rate of vision loss is different for everyone.

If you have any questions, about the RP light conundrum, or about my RP experience in general, please don’t hesitate to ask.  I actually really like having the opportunity to address specific queries, if I can.  Thank you for being a part of my story.

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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 1 – Retinitis Pigmentosa

Along with my application for the Emerging Voices Fellowship – that I didn’t get (fuckers) – I had to send in a writing sample.  I felt compelled to share the pieces I sent them, so this will be the first of 5.  If you know me well or have been following my blog since it’s inception, you may recognize some of the stories, but they have been edited again and again since their original appearance.

*Retinitis Pigmentosa (RP): A group of inherited disorders in which abnormalities of the photoreceptors (the rods and cones) of the retina lead to progressive visual loss. Abbreviated RP. People with RP first experience defective dark adaptation (night blindness), then constriction of the visual field (tunnel vision), and eventually, late in the course of the disease, loss of central vision. 

 The first time I heard about Retinitis Pigmentosa was from Barbara Walters. She reported a story on 20/20 about a family whose father and three children all suffered from a rare eye disease that caused something they called “tunnel vision.” I remember all the kids were very blonde, with extraordinarily bright blue eyes and pale skin; it was as if they were rarely exposed to the sun.  The program attempted simulations to show what an RP sufferer’s deteriorating vision is like, and it was terrifying; can you imagine your entire view of the world being the size of what you see through the hole in a straw? Knowing that the hole would get smaller and smaller until everything was darkness?  I remember feeling frightened and sad for the family, and thinking how lucky I was that everyone in my family had such good eyes.

The second time I heard the words Retinitis Pigmentosa, I was in my late 20’s and visiting my optometrist for a routine refraction. I was there to get some new glasses because my night vision seemed to be worsening; not unusual in nearsighted patients.  He asked if he could dilate my pupils and take a closer look inside my eyes. The exam only lasted about ten minutes, but it seemed like an hour.  It was only the second time my pupils had been dilated and it was excruciating. The bright light from his instruments felt like fire and my eyes burned.  When he finally finished the exam, he said something about bone spicules in my retinas and a rare genetic disease that caused blindness. He referred me to a specialist named John Heckenlively.  I nodded my head, pretending to understand what the hell he was talking about, took Heckenlively’s number and proceeded to blow the whole thing off. There was no way I could have some random, rare eye disease.  No one in my family even wore glasses; except me of course.

Fast forward about five years; I am walking out of a Borders bookstore heading toward my car, and as I turn a darkened corner, the sidewalk in front of me disappears. It was like the darkness had consumed the ground beneath me. I stood there in abject terror for a few minutes, until I looked up and found a street light shining dimly a block away. I rushed toward the light, telling myself to call the eye doctor in the morning.  I obviously needed some new glasses.

Two days later I am in the Ophthalmologist’s waiting room, filling out-patient forms, and I come to the question about previous problems with eyes. I hadn’t thought about my visit to Dr. Vogel, the aforementioned optometrist, or Retinitis Pigmentosa in five years, but sitting in that waiting room I remembered, and I think at that moment I knew something was wrong, something that couldn’t be fixed with new glasses. That afternoon I had my first visual field test and was once again referred to Dr. Heckenlively. This time I couldn’t ignore it.

Five months later, I was formally introduced to Dr. Heckenlively and Retinitis Pigmentosa.

Poem in Foxglove Journal

I am thrilled to have my poem, “Rose Tinted Glasses” in Foxglove Journal.  My thanks to Elizabeth Gibson who has created a beautiful journal.  I am honored to be among the writers she has chosen to publish.

 

Back in my Arms

I picked Zelda up yesterday; I can’t say I was particularly glad to see her, as her absence allowed me a couple of days of pretending that I can see perfectly well, but I also know it wouldn’t have been safe to prolong our reunion.

I spent the afternoon at my Dad’s and I felt like Z was staring at me from the hat rack, pleading with me to take her outside. And yes, I do realize that Zelda isn’t really alive and doesn’t stare, but she does bring the world to life and helps me see things.  Maybe she’s not so bad after all.

I have always been a bit of an escapist; I prefer Harry Potter to Science Monthly and I am always up for a good Super Hero movie or TV show.  I am pretty sure that any aversion I have to Zelda and her (almost constant) presence in my life, is directly related to how she keeps me from imagining that I am escaping my RP.  But, I have also gotten to experience how using Z opens the world up and shows me things I didn’t even realize I was missing.  I know, as using the cane becomes second nature, I  will feel more comfortable being out in the world; with her help, I will find stories that are waiting to be told and I will walk down the street without the weight of the anxiety that comes with limited vision.  And, as my vision deteriorates, I will have her with me to help me over the obstacles.

Life exists, for all of us, on a constant precipice and part of my struggle happens to be blindness; and yes, it sucks, and I wish I had never heard of fucking RP, but it is here to stay, and now I have this amazingly simple and kind of magical tool, in Zelda, that will allow me more freedom. I needed the couple of days away from her; it probably wasn’t an accident that I left her in my Dad’s car, and  I know the process will be slow – I am not a jump in with two feet, take the bull by the horns kind of person – but my pace is perfect for me.

 

Avoiding Goodbyes

I was supposed to have my final lesson with Tamar yesterday, but I woke up feeling a sort of jet lag that resembled flu or an unfortunate hangover. Joe has started a new shift at work and we are now getting up at 4am, so my body is adjusting, but perhaps I was also putting off having to say goodbye to Tamar.

Now that I know my next lesson with Tamar will be my last, I have begun to feel exhausted just looking at Zelda.  She feels like a weight that I can’t bear, like a blanket covering my heart in this energy sucking heat wave that is melting the decrepit streets of Los Angeles. I feel desperate to leave her behind, along with RP and blindness and the cruelty of these sun filled days.

I try to keep my mind alive with the moments that Zelda has shown me freedom and a weightlessness in my existence that wasn’t there before I held her in my frightened grip. I force myself to take her with me everywhere I go, whether or not I actually use her, but I still find myself in agonizing contemplation over taking her or leaving her hanging on her crowded hook.

I take her from her resting place and sling her across my back like an iron burden.  She punctures the world I have pretended to live in for so many years and I feel her pulling me into an isolation that I crave more than I like to admit.  How can she be my burden and my protector?  How do I resolve this in my head and in my heart?  What will I do when I no longer have Tamar to lean on?

 

 

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