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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

August 2016

Country Road

 

Hollywood doesn’t set you free; she crawls under your skin and into your head.  She feeds you her pulse and pulls you into her sun starched rhythm.  In Hollywood, there is no such thing as typical, no blueprint or uniform.  We are not identifiable.  We move slowly but are never settled.

At the junction of Sunset and Poinsettia, I was waiting for the light to change, when a girl on a bike crossed my path.  The bike was old-fashioned with big white washed tires, flowing handle bars and a red basket at the front.  She peddled slowly, as if she had the whole day to ride aimlessly and contemplate simple things.She wore a big yellow sun hat and a tank top saturated with the sky.  The scene would have transported me to calming images of country roads, if it weren’t for her tramp stamp and exposed glittery g-string.

Across the street, an emaciated man with brittle shards of brown hair stopped suddenly and shouted into the ground, holding himself tightly around his middle.  He seemed to stop breathing for a few seconds, then leapt into the air and raced off down Sunset, darting around tourists and sidewalk nappers.  The girl on the bike didn’t even glance in his direction, just kept peddling further into her own imagination.

A withering woman stood next to me, exhausted, old Hollywood etched into the wrinkles on her face and hands.  She smiled at the girl on the bike, remembering her own star lit youth, and watched the dance of the shouting man as if it was something she had seen a million times.

The light changed, I secured my grocery bag on my shoulder and crossed Sunset to walk the 3 blocks home.

 

Life in Degrees

With my recent decline in vision and subsequent approval for mobility training, I have been retracing my RP life in degrees.  When I was diagnosed with RP, I had about 50 degrees of peripheral vision.  7 years later, I had lost 50% of my already limited vision and had only 25 degrees; that was when I stopped working.  In the 7 years since I have stopped working, I have lost just over 5 degrees and I finally  and completely believe I made the right choice to stop working.  I have spent days feeling useless and lazy and telling myself that I should be working, that there was no absolute proof that stopping full time work was preserving my vision.  There still isn’t absolute proof, but I think the cards are stacked pretty heavily in favor of not working.  I hadn’t thought about it in comparison to how much vision I lost in the first seven years, but now that I have, I feel fortunate that the progression of my RP has slowed so dramatically.  Even though the recent vision loss has put me into a whole new realm of the RP world, and that is upsetting, I am able to see the good fortune in my story.

It doesn’t mean that I am not afraid.  I am terrified.  I am already imaging myself going to sign up for the training and being shunned for the fact that I do have some vision; enough that I can get around without the aid of mobility devices and see your face when you are talking to me (as long as you are not too far away).  I feel like my RP is the same as almost every other aspect of myself; not quite right, not good enough or, I suppose in this case, not blind enough.  I am afraid of being out on the street with a long white cane that calls attention to my presence; I prefer being in the shadows.  I am afraid to take the steps I know I must take and knowing me, I will take my time.

I do plan on pursuing the training and I look forward to being less bruised and having fewer collisions, but I have to ready myself for what I believe will be a huge step and a huge undertaking.  It will also involve homework and practice and I seriously suck at both those things(which I am sure is apparent in how infrequently I post here).  But, as I continue on this path, I will write about it and share it with anyone who wants to take this part of the RP ride with me.

Navigating Urban Life

In the years since I stopped working, I have made a point of avoiding the navigation of urban life as much as possible.  I hide away.  Frustration and fear are my constant companions.  My vibrance has been sand papered away and I  blame RP, folding myself secretly into the web of it’s darkening arms. I put on a brave face and pretend that having RP is no big deal, just an annoyance.  And, then I have another collision which leads me to more thoughts about the white cane.  I think it is mostly for other people because I don’t really need a cane. I am not that blind.  Am I?

After my most recent collision in which I sustained injury, I decided, with the support of my amazing husband, that it was time to actually take the step and inquire about mobility training.  I contacted my low vision specialist who told me that I had to have a current visual field test in order to qualify for cane training; I made the appointment.

My last visual field was at least 4 years ago and at the time, I had between 20 and 25 degrees of vision; it has to be 20 or less to qualify for the training.  I had the test and waited for the results, knowing that I was facing a double edged sword.  If my visual field results were the same as 4 years ago, I wouldn’t qualify for the training, and if I do qualify for the training, it means that my vision has deteriorated.  Today I got the results. I qualify.

The news wasn’t surprising, but I was surprisingly upset. I suspected what the results would be, but I also secretly hoped they would be the same as 4 years ago. I had worked it all out in my head, the practical reasons for getting a cane, but I hadn’t really thought about how it would make me feel.   I stared at the subject line of the message, terrified to read the email. I sat at my desk, my breath knocked out of me, as panic escaped from my chest uncontrollably. When I finally got the courage and read the results, tears ran desperately down my cheeks.  How can I be blind enough to need a white cane?

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