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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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disability

Rejection Skin

I went through a period in my late twenties when I was writing almost prolifically and sending my work out a lot and getting published a little; it was when I acquired the skin necessary to deal with rejection.  I would get the rejection slips and immediately start editing the rejected pieces so I could mail them out again (it was all by old-fashioned mail at that time – yes, I am that old); it was like clock work.  I kept all of the rejection letters in a file and all of the lit journals info on index cards; I learned how to let the rejections roll away and I just kept writing.  Then, life got in the way and things fell apart.

For almost two decades, I put my writing and all of the aspirations that went along with it, to the side.  I grieved and drank and wept and worked a lot of different jobs; I got married and divorced and tried to figure my shit out, all the while feeling pretty empty and struggling to put pen to paper without much success.  I still called myself a writer, but I wasn’t writing.

In 2010, when I stopped working, I had the grand plan that I was going to write a book about my RP journey; I was going to write every day, become successful and be a real writer. None of it happened; my husband even gave up our second bedroom to make a writing room for me, but I avoided the room and the computer, and watched a lot of daytime TV instead.  I moved my desk into the more open and spacious front room of our apartment, thinking the space would help me feel more creative, but that didn’t work.  I started this blog, thinking that it would make the idea of writing a book less daunting, but I posted very sporadically and felt like the blog was an obligation rather than the pleasure and the solution I had hoped it would be.  Maybe I wasn’t ready to write about blindness.  Maybe I needed (a lot of) time to figure out who I was outside of the regular working world.  Maybe I was just lazy.  All I know is that I wasn’t writing and I had obliterated my grand plan.

I blogged in a very half assed way for years, not feeling like a writer, or much of a person at all really.  Then, an old friend of mine suggested that I step away from the blog for a while and get back to what I call my first love as a writer; poetry.  That’s what I did.  I let go of the pressure I had put on myself to create blog posts and I started writing poetry again.  I pulled out old poems and bits of poems that I had started years ago; I started revising and editing, which led to me writing new pieces, which eventually led to me sending my poetry to journals and magazines.  I was skeptical of my value, but I was writing.

The first round of submissions, after so many years of being dormant as a poet, was exciting; I felt productive and creative and alive and I was certain that my rejection skin would come back along with my return to the literary world.  I was lucky that in the first round of submissions, an amazing and supportive poetry editor – who now has her own lit mag (Wildflower Muse) – took the time to read my poems and even look at my very neglected blog, and accepted three of my poems for publication.  When I got the acceptance email, I cried; I felt as if my return to writing was not in vain.  But, then the rejections started coming and it turns out my rejection skin was pretty thin.  I started thinking that I had been mistaken, that my writing was crap and I was crap and what the fuck was I thinking trying this writing thing again.  And, then I got another acceptance, and more rejections and another acceptance and more rejections, and I felt my skin thickening.  I realized that the validation isn’t in getting published, but in the creating, in the writing.  I am not going to lie, it feels really good to get published, but I have to learn, again, how to get the rejections without taking them in and allowing them to define my worth as a writer.

I discovered this week that my rejection skin isn’t entirely intact.  I had been waiting 6 months to hear from a journal that actually pays poets for their work; the idea of actually getting paid for my poetry was tantalizing and I got my hopes up, and I got rejected.  I let it get to me.  I spent a day and a half feeling like I was worthless as a writer; but then I rejected those feelings.  I looked at the pieces that were rejected and saw where they need changes and got down to the work of revision.  The rejection file is much thicker than the acceptance file, and it might always be, but I will keep writing.

My return to writing poetry opened up my life as a writer in ways I never imagined; I was introduced to a community, though the internet and social media, that I had always felt separate from. I returned to writing my blog with enthusiasm and passion, and have become more involved in the blogging world.  I am getting accepted and rejected, followed and unfollowed, but it is all part of being a writer, of living a writing life.

Lesson #3 Entirely with Zelda

I think I was on a bit of a cloud during my first two sessions with Tamar.  I was so proud of myself to have taken such a big step, impressed with her, safe with Joe there at the second lesson and feeling generally positive.  That changed.  By the third lesson, I began to question why I was learning to use the cane at all and feeling incredibly exhausted and overwhelmed by the whole process.  I have an unfortunate tendency to lose hold of the reality of a situation by trying to convince myself that it is all positive, and then,  everything that is difficult or challenging about whatever I am trying to do comes crashing around me. I have often just given up.  This time, I am not giving up; I can’t.

I sat in the lobby of the Braille Institute with Tamar for a while on Monday, wondering what I was doing there; why do I need to learn to use the cane when I can see my teacher showing me how to use it.  But, of course I know why I need to learn; it’s because RP is a total mind fuck.  I see and I don’t see; I have no idea what I don’t see, but what I see fools me into thinking I am seeing more than I actually see.  Do you see?  Total Mind Fuck!!!!!!!!

I watched all the people who had canes and couldn’t see me watching them and I felt like a fraud.  This is what RP does and it is really dangerous.  I am blind and I do need help and I do need the cane; the sooner I can embrace all of that fully, the sooner I will be able to relax and really let Zelda be a constant companion. I was also nervous because I knew that lesson #3 was going to be entirely with the cane.

I felt better after talking things out with Tamar; a little more justified, a bit calmer and also grateful that I have resources like the Braille Institute.  It was time for Zelda to come out of hiding.  First, we went into a quieter part of the BI where there is a long hallway and I walked up and down the hallway, using Zelda for safe passage.  I learned about more methodical scanning techniques and about different ways to actually use Zelda.  I can sweep her back and forth, or tap her from side to side or simply hold her in my left hand, when I am not using her, and allow her to glide in front of me.  I am having a tough time getting the 2 to 10 sweep and always end up too far to one side or the other, but I have the footwork down pretty well.  The thing is, if I am not maneuvering the cane in front of me in the proper way, I am at risk of missing a lot of what is in front of me, or unintentionally assaulting strangers.  I am going to have to practice at home.  I suck at homework.

We must have been in the hallway for close to an hour and then it was time for the stairs.  I wasn’t blindfolded for the stairs, but I did have to keep my eyes closed while I was practicing the steps Tamar taught me.  I won’t give you a detailed list of her instructions, but just know that there are a lot of them and I am not sure I even remember them all.  I was anxious and scared and wanting to be a good student.

Going up the stairs isn’t too bad; it does take some practice and there are specific ways to do it safely, but I didn’t feel particularly afraid doing it; just a bit bumbling at times.  Going down the stairs is a whole other thing.  It is super scary.  Have you ever had one of those dreams where you are falling and as you begin to plummet you wake up and your stomach drops?  That is what it feels like the first time you find the top step with your cane.  The lead up is like the steep climb of a roller coaster, except you have no idea when the drop is coming. The first time I found the step, I started just a few feet from the stairs, but it still took my breath away when Zelda dropped down into nothingness.  Then Tamar asked me to find the stairs from farther and farther away; this didn’t alleviate the anxiety, just prolonged it.  At one point, she led me around to disorient me, so I would have no idea how far from the stairs I was, and then pointed me in the right direction.  I learned that I have an annoying tendency to veer to the right as I am walking because I  apparently swing the cane too far to the right.  So much for being a graceful dance partner for Z.

We worked on the stairs for over an hour and I don’t think I relaxed for one minute.  I was stiff and exhausted and I couldn’t imagine how I would get through three months of this.  I can’t explain why, but for some reason, during this third lesson, the shit got real; maybe because it was finally a lesson entirely with the cane or because I experienced a new kind of fear around my blindness.  All I can say is that this whole blind thing is really hard; it isn’t impossible and I know during my lessons there will be ups and downs (literally), but it is a typhoon of emotions and experiences that I have no choice but to meet head on.  I am sure, however, that I will do it in my classic stubborn way.  I keep forgetting to take Z with me when I go out and I haven’t used her once since the lesson on Monday.  Perhaps this is my rebel week.  I will have to come clean with Tamar next Monday.

Empty Case

Every Thursday night, I take my pugs, Blossom and Jade, to a playgroup at a local pet shop.  The group is referred to as  Yappy Hour and my girls love it.  I don’t do the dog park thing, so this is the one opportunity a week they get to be off leash with a group of other dogs.

The play commences at 730 in the evening and lasts about an hour.  In the fall and winter months, it is already dark by 730, so I can just wear the glasses I use for all activities that don’t involve the sun.  My night vision is almost non-existent, but the dogs keep me in line and I always walk the brightest path along Sunset Blvd.  I have walked that stretch of road so many times, even the grooves in the sidewalk are etched in my memory.  I am not generally comfortable being out by myself at night, but I cling to the false sense of security that my pugs give me and brave the dark for their sake.

In the Spring and Summer, I am faced with a season specific dilemma.  The sun can stay out as late as 8pm on warmer nights and I struggle with the decision between wearing my sunglasses and having to bring a bigger bag with me or baring my eyes to their most bitter enemy.  I have to admit that I can be a bit lazy and so sometimes choose exposure to the sun over packing and carrying a bigger bag, but most of the time, I wear my sunglasses and bring the regular ones for the hour in the pet shop and the walk home.

On an evening in the middle of the summer this year, I got myself and the girls ready for Yappy Hour, packed their bag with treats and poop bags and put my regular glasses into another bag with my wallet.  When I got to the pet shop, I tucked myself into a corner to change my glasses and found myself in an unexpected bind. The case was empty.  I had left my glasses on my desk and brought an empty case. Without glasses, the world is a complete blur for me, so I started to panic, just a bit.  I was wearing my sunglasses, but they were no use to me; they are too dark to wear inside and it was getting dark outside.  How the hell was I going to get home?

I took it in stages.  First, I had to get through Yappy Hour without being able to see who was who or which dog was which.  Fortunately, I am well-known to most of the staff at the pet shop and the woman who oversees the playgroup is our dog trainer and knows about my RP. I let her know what was going on and asked her to keep a bit of an extra watch on my girls because I couldn’t see them clearly running around the play area.  But, I still had to figure out how I was going to get home.

I don’t know the other humans in Yappy Hour well enough to ask them for a ride home and I think most of them walk there anyway, but thankfully my husband works about 5 miles from home.  I hated asking him to leave work early, but this was an emergency.  I called him and of course he agreed to come and get me, but he couldn’t leave until almost 9 and the pet shop closes at 9.

At 830, Yappy Hour came to an end, I put the leashes on Blossom and Jade and I just sat there pretending to look for something in my bag while everyone else trickled out.  Then, I got up and began to wander the store, taking care not to topple over displays or crash into any pillars.  I chatted with our trainer for a bit, but she and the other staff were busy getting the shop ready for closing time.

The time passed like molasses.  845 and my husband hadn’t arrived.  Ten to nine, still not there.  Five to nine, the staff were locking the back door and there he appeared; my hero come to escort his blind wife home.  I was so grateful to see him, but also felt foolish and ashamed that I hadn’t been more prepared.

Since that night, I haven’t left the house without making sure my glasses are in the case.

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?

Leisure

RP has thrown me into a life of leisure.  It sounds decadent,  but has felt confusing and burdensome.  It has been a struggle for me to brush off the restraints of socialization and embrace the time that RP has afforded me.  I had such grand ideas when I first stopped working in the traditional world; I was going to immerse myself in writing and finish my memoir, but instead I retreated and built a cocoon of shame and self loathing.  I spent years trying to figure out how to be a blind person and forgot how to be anything else.

Although my days of not working can be exhausting because of the need for constant visual vigilance every time I leave the house, I get to choose when and where I go.  I have the freedom to decide what my days look like and what path my life will follow, unencumbered by the 9 to 5.  in the past year, my focus and my attitude have shifted.  I have become a little less afraid and started to think about my life and myself in a more complete way.  I am not just the fat girl who is going blind.  I am a writer and a wife and a friend and a mom to 4 pets.  I am learning again to be person beyond the boundaries of my disease and feeling incredibly grateful for my life of leisure.

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.

 

Spill

The doctors tell me my vision is stable, but I feel blinder to the world around me.  I am tripping more, spilling out onto sidewalks and park lawns.  I am searching the house more often for my husband and my pugs, who are usually very near me.  I think that when the doctors say my vision is stable, they mean that the RP isn’t invading my central vision.  Of course I am incredibly grateful that my central vision remains unsullied by the tentacles of RP, but I still feel like a freak and a failure and a burden.  I try not to dwell on what I can’t do, but Living in Los Angeles makes that difficult; the car thing and the sun thing and the social thing are all dictated by the blind thing.

Last week, I fell twice; once on the grass when I tripped over a friends dog who I didn’t see and once in a driveway when I tripped over one of my dogs who I didn’t see.  The scrapes and bruises are left as reminders of the way that RP, literally, pushes me to the ground.  I find that I am dealing less emotionally well when these accidents occur.  I am no longer good at brushing things off, but have to take the time to collect myself and turn off the berating tapes that tell me I am a loser.

I feel more nervous.  I am behaving more cautiously.  And yet, I am more bruised than ever. This must mean that my peripheral vision is still deteriorating; or at least that is what my mind is telling me.

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