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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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self doubt

Stepping Back

April was a month full of the celebration of poetry, which was enlightening and exhilarating, but for me as a poet, it was a month weighed down by rejections.  March was the same.  I haven’t had anything accepted for publication since February and the constant rejections are beginning to pluck at my barely opaque confidence.

I am not sure why the rejections are hitting me so hard right now.  It could be the sheer volume of them or perhaps the nagging fear that all writers experience, of being a fraud or no good. I wish I could say that being published doesn’t matter, but it has become something that I look to in order to gauge the quality and relevance of my writing.  Right or wrong, it feels inevitable to me.

There have been some incredibly good things that have happened in the past month, with regard to my poetry specifically, but the rejections are tarnishing those good things, or I am allowing them to.  I can’t seem to get out from under the weight of defeat.  I don’t feel motivated to write.  All the words feel wrong, trite or inconsequential.  It feels pointless and it is making me feel sad.

I am not looking for validation.  I know that the validation can only truly come from within me.  I need to step back and try to gain some perspective.  Perhaps I need to step back from writing altogether for a while, or maybe just step back from submitting my work and try to focus solely on the writing.  I don’t know.  All I know is that it feels bad.  Every day I have to pick myself up from feelings of defeat and it is getting harder and harder to do.

Maybe I need to get out of the house, go hiking.  Maybe I need a juice cleanse or a therapist.  Maybe I need to take up mahjong.  What I do know is that I need to get some distance and try to look at all of this with different eyes.  The eyes I have just aren’t working.  I suppose they never really have.

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.

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.

Buzz Kill

The first time I got really drunk, I was 13.  I stole 2 bottles of wine from my mom’s plentiful collection and ran off in the dark to hang out at the junior high school with my friend Jean.  I discovered that night that alcohol strips the skin off of fear, and I liked the feeling of shedding the weight that life had piled onto my back.  I found a way to disappear into a space where I felt nothing, where I became no-one .

As I got older and my world fell to pieces around me, I found myself turning to the bottle more often.  My main task in life was finding ways to escape from the ache of my reality.  I dove into pools of cabernet and whiskey; emerging without a face or a heart.  I craved the boozy fog and the forgetfulness.  I drank in the guise of a good time, but fun was the furthest thing from my mind.  I hated my sober self, but my drunk self felt confident and beautiful.  My drunk self was a liar, a devil on my shoulder, a basket of thorns disguised in a soothing blanket.

Now, older still, and fat and lost and going blind, I drink to forget the darkness. I drink to fill a night that follows a lonely day of grim contemplation. I drink because it is something to look forward to. I drink to erase my self loathing for just a little while. I have been hiding within the sweet promises of bottles of wine and lost sight of who I am, or who I could be without the barriers of booze and flesh and rage. I don’t want to be the buzz kill. I am terrified of what I might face if I push the curtains aside. 

January

I hate January.  It is a month of sad anniversaries and debilitating despair.  I am useless in January.  I gain weight and get drunk and climb under the biggest rock I can find. This January was no exception; but now February has rushed in and I am slowly emerging.

Just as I expected, when I came out of seclusion, my demons were there to greet me. They are like bad friends that I can’t shake, no matter how deeply I keep them, or myself, buried.  They are the faces of fear and grief, and no matter how much vision I lose, they do not seem to dim or fade.  I am sick of them.  I am on a mission to get them the hell out of my life.

I have been allowing fear to control my whole life and I have the power to stop it from interfering with my journey. I have been stuck in the pit of grief over the loss of my mom at 18 and my brother just a few years ago, and I have the power to feel it without allowing it to define me.   I have been isolating myself because of my limitations and my differences, but I know it is time for me to step out into the world and live beyond my limitations.

I don’t have any grand plans or schemes of recklessness, but the motions don’t have to be huge to be impactful.  I am ready for something new.  I am ready to believe in the beauty and the power of my voice and my words and my heart. I am ready to get un-stuck.

Poetry and Blindness

 

I realize that I am a rubbish blogger, tweeter, instagrammer and facebooker.  I go along feeling as if I have just written a blog post and when I visit my site, I find it has been months since I have posted a single word.  The truth is, some days I have nothing to say or I am afraid to face the things I know I want and need to say, and some days I write as if I am burning and crazy and elated and drowning. None of which leads me to blog on a regular basis.

Although I have not written a blog post in a long time, I have been writing and rising out of the ashes of a disease that steals not only my vision , but my sense of self and purpose.  I always knew that I wanted to write, that the spaces inside the words are where I feel my truth, but I got lost in the murky waters of RP.  I wrapped myself up in the task of becoming a blind person and forgot that I am a person beyond my blindness.

Outside of this blog, I write poetry.  Poetry is really my first writing love; it is where my creative pulse was born.  A few months ago, after a 20 year hiatus, I decided I wanted to start submitting my poetry for publication again.  I had some things published when I was in my 20’s, but life got complicated, I put my writing voice on a high shelf and I stopped sending my work out.  Starting this blog got me excited about writing again and although it took years, I finally immersed myself in my poetry and gathered up the courage to put my voice back into the literary world.  I was elated when the first response I got was a positive one.

Heather Lenz, the poetry editor at Stepping Stones Magazine, accepted three of my poems for publication.  I am over the moon.  I feel reunited with my self and my passion.  I feel as if I have stepped out of the darkness and learned how to weave RP into the fabric of my life rather that allowing it to smother me.

I can’t say that I will become a prolific blogger; I am still trying to get a handle on that discipline thing, but I do think I will be blogging a lot more.

 

The two poems that have appeared in Stepping Stones Magazine can be read through the links below.

Twenty-Five

Tiny Voice

 

 

 

I Should Be Over the Moon

I recently saw my retinal specialist, who told me that my vision  remains stable.  I have had stable vision now for about 7 years, and I know that in the world of RP I am extremely lucky.  And, that piece of good fortune does make me happy, but then I go outside where my disease still swallows the edges of the world and daily collisions remind me that I am defective.  I still live in this purgatory of sight; not a sighted person, not a blind person, but just someone in the invisible in-between.  I still feel trapped; not trusted to take care of myself or go places on my own.  I still feel afraid; of the darkness and everything that is waiting to blind side me.  I still feel useless; unable to do daily life things like work or run a quick errand.  I still have RP.  Nothing has changed.

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