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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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collisions

Waiting Games

For new readers:  When I refer to Zelda, I am not talking about a pet or a child or a childhood toy I just can’t seem to part with; Zelda is my white cane.

It seems I am always waiting; waiting for the next decline in my vision, waiting to hear about that poem I submitted 6 months ago, waiting for the package to be delivered from Amazon, waiting for the scale to give me good news, waiting for the next time I get to eat, waiting for the end of the day and that bottle of wine, waiting for it all to be over. And then, suddenly, something I have been waiting for, arrives.

On Monday of this week, I spent the day seeing doctors and getting tests; nothing serious, just inconvenient, exhausting, and honestly, pretty gross, so I am not going into further detail.   That said, I spent a lovely day maneuvering through the seriously fucked up American healthcare system, without Zelda.  I have been leaving her at home a lot lately; we are having a heat wave in Hollywood and I have been feeling lazy and not wanting to carry yet another thing when I go out, so Zelda gets left behind.  I may have also still been in a tiny little bit of denial, but it really is fucking hot here.

Anyway, I made it through most of my healthcare nightmare day unscathed, until I was being escorted out of the maze of the hospital by a kind, lovely and very fast walking ultra sound tech.  I was matching her pace, feeling confident striding down the corridor, and then she said, ” take a right here”, and she turned and I didn’t and the collision ensued.  When she said to turn right “here”, I thought she meant a right turn that I saw coming up about 10 feet ahead of us; the right turn she was actually talking about, I didn’t see. I had no idea what was next to me, or how close I had been walking to the wall, or how many adjoining corridors we had passed.  When she and I collided, my confidence plummeted to the ground, but I quickly scooped it up, apologized to her and told her I have severely limited vision and I really should have been using my cane.  I felt bad about almost knocking the poor woman down, but I didn’t feel embarrassed about admitting that I had a cane and that the collision was my fault because I should have been using it; it was just the truth.  If I had taken Z with me, the tech would have walked slower and I wouldn’t have been trying to groove right alone with her, feeling dangerously confident about my non-existent visual capabilities.  I took my time for the remainder of my walk through the hospital, and found a comfy chair to settle into while I waited for my husband to pick me up.

Yesterday, I was taking one of my frequent walks to the grocery store, sans Zelda, for the same reasons listed above.  As I approached the first street crossing, I thought I heard someone walking near me, but I had no idea how near. I slowed my pace a little, tuning my ears to the sounds of footfalls and rustling clothing, but when I got to the corner and reached for the cross button, I bumped into a woman who must have been just inches away from me. I still get fooled by RP a lot of the time and think people and objects can’t be as close to me as they actually are; my ears are not that well trained, yet.

The woman was super nice and friendly and didn’t seem to think twice about our collision, but it gave me pause. I realized, or perhaps I have known for a while, that my vision has gotten worse.  Decline in vision is something that someone with RP is always waiting for, but in my case there has been a lot of uncertainty about whether or not it is actually happening.  I am fortunate that my vision loss has had a very slow progression, and there have been so many times when I feel pretty convinced that I am not seeing as well,  and it turns out that my vision is stable.  This time is different. I feel the world pressing in against me; the shrinking circles of my vision have become more prominent.  But, somehow, being in the center of the decline, looking at the world with the heightened sensation of tunnel vision, I don’t feel afraid.  I have been waiting for this.

During the rest of my sojourn to the grocery store, I must have had at least 10 near collisions and people coming at me from, seemingly, out of nowhere.  I kept thinking over and over again, “I wish I had Zelda with me”.  I think I’ll take her out today, no matter how hot it is.

 

Pillars and White Canes

I am a walking disaster. The bruises on my arm and hand and legs, and the bump on my head, remind me that I can’t just walk through the world as if I am graceful, as if I can see.

My most recent assault was perpetrated by an enormous pillar in the middle of an aisle in a Sprouts grocery store.  The fucking thing was wider than me (which is saying something), and I didn’t see it.  I was on a mission for roasted veggie chips in the bulk section, but the pillar had other ideas.  I ran into it face first and hit is so hard that I ricocheted off and landed on my ass, hitting my arm and hand against the bulk bins.  It sounds comical as I write this, and I did laugh at the time, but it really hurt and got me thinking again about white canes.

Every time I have a more memorable collision, I start contemplating white canes.  I wish the damn things weren’t white; I am cool with the red tip, but I want a cane that can be personalized with dragons or flowers or pictures of pugs.  I have an array of aesthetic desires when it comes to accessories.  And honestly, the cane scares me.  I wonder what it will mean if I take the step toward a mobility device and how I will have to readjust to the world around me.

I know all the reasons why a cane would be a good idea; I could avoid collisions and accidents and it would let people know that I can’t see them.  The cane would scream, “blind girl coming through”, and the crowd would part to let me pass.  But maybe I’m not ready to be that blind.  Maybe I need to hide in my partially sighted shadow for just a little while longer.

 

Road Burns

I shared a Facebook post this morning from a fellow RPer which joked about inanimate objects exhibiting hostile behavior toward humans.  I often post these kinds of things, in the spirit of camaraderie and to give some understanding, through humor, to those who don’t know what it is like to live with RP.

I know that everyone has accidents.  Everyone bumps into things, trips and even falls on occasion.  I often get the, “that happens to everyone” remark when I talk about my collisions, bumps and spills.  But, when you have RP, it isn’t the same; it happens way more often and every time it happens it is as if  the door, floor, wall and RP are all slapping you in the face.  I have been cut, bruised and even broken bones because I didn’t see something that came upon me as if out of nowhere.  Today, it was the curb.

I was walking my pugs, Blossom and Jade, to our neighborhood park, and to get to the park you have to cross a busy street.  There is a stoplight, so it isn’t usually treacherous and I have crossed at this particular intersection so many times, I thought I could make it across without a major scan of my surroundings.  So, I started to cross the street, double dog leash in hand, when my youngest (only 10 months) decided it was play time.  I rushed to separate the dogs and get out of the intersection, and before I knew it, I was doing a tango with the curb and falling like a steel brick onto the sidewalk. The irony of my earlier Facebook share was not lost on me, even as I picked myself up off the ground.

My injuries were pretty minor this time.  I got a couple of skinned and bloody knees and a solid dose of reality and shame, but I still went to the park and got to watch my girls play.   it was just another day in the arms of RP and another intimate moment with the pavement.

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