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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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Blind Memoir

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.

 

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

 

 

 

Re- Emergence

It feels like hundreds of years since I have visited my own blog.  My bones should have become brittle and my hair stark white.  I will forever be in the waiting game, but this time, I return to this blog having been immersed in a different kind of writing and not simply buried under a rock.  I needed to step away from prose and wash myself again in the fragrance of poetry.  I have always been a poet, a writer, but for years I wasn’t writing.  I  struggled to stay afloat while trying to figure out how to be a disabled person.  I had no job, therefore I felt I had no value.

I began to define myself as a disabled person who couldn’t contribute and forgot that I exist beyond my blindness.  I allowed RP to steal my voice as well as my vision.  After my diagnosis, I dove into the darkness and forgot about all the light that remained; I immersed myself in the task of becoming a blind person and forgot to pay attention to my pulse and my dreams.

I remember being in a workshop at one of my former jobs where we were asked to list words to define ourselves.  If I had been asked to do that after I stopped working, I know the first word on my list would have been blind. Now, although blind will always be on the list, it no longer stands alone.  I am wife, writer, friend, daughter, pug fanatic, and going blind.

Lethargy

I am silenced by grief, by shadows and blindness and the infernal heat wave that coats my city like an itchy, heavy blanket.  In my mind I am a writer, but in reality, I feel myself coming unhinged.  I try to climb up through my lethargy and snap my pieces back into place, but the heat pushes me down on the floor, where blindness doesn’t matter and the stillness is intoxicating.  If I am perfectly still, the heat won’t touch me and my ghosts can’t find me.  If I rise to the occasion of my creative pulse, I may burn up in the face of my fear and the darkness that chases me through the minutes of my life, whispering that I am useless and defective.  But, the sacrifice is my voice, and it is a sacrifice I am not yet willing to make.

Loss

I have been away from my creative self for so very long; consumed by grief and struggling under the weight of loss.  For almost three years I have been defined by illness and death.  I assumed the roles of watcher and caretaker.  I gave over my heart and my strength.  I don’t regret it.  I truly got to know my brother and to show him how much I loved him.  I wouldn’t have chosen to do anything else but be there for him, as a friend and a sister and to try to quell his fear.

Now that he is gone, I am led, inevitably, to thinking about how much of my life has revolved around loss.  Loss of loved ones, loss of freedoms and of course, loss of vision.  There are so many things that just aren’t there anymore. It is as if my mother and my brother and the edges of the world have fallen into an abyss that I will never be able to gaze upon or reach.  I realize how losing my vision is so much more like a death than I had ever known; they are both disappearance, silence and blackness. Some days it is as if I have forgotten that my brother has gone and I pick up the phone to call him and tell him about a new mystery show I have found that I know he would love; I forget how much of my vision is gone and I walk along the sidewalk as if I can see the whole world, until I  fall into shadow and watch the sidewalk fade away.

Perhaps I fall into these moments of forgetting so I can cope with all the other moments; when I wish that I could hear my brothers voice, feel my mothers comforting arms and look into the brightness of the afternoon.

Toenails

For years now, I haven’t been able to see my toenails.  I have cut them by touch, but I often cut them so short they bleed, or so jagged that they tear holes in my socks.  I have felt ashamed of my feet and ashamed to ask for help with grooming my feet; it feels like just one step up from having to ask someone to wipe your bum.  I would leave cutting my toenails for weeks until the nails cracked or were stabbing my husband in the night as I rubbed my sleepy foot against his leg.  I finally had to ask for help and it was one of the hardest things I have had to ask for since my RP diagnosis.

I know, it seems silly; isn’t giving up driving and having to ask for rides everywhere worse than having to ask for help with cutting your toenails?  Not for me.  I felt so sad and so ashamed the day I finally asked my husband for help.  It wasn’t because I feared his reaction, it was because I was having to admit that a simple grooming activity that almost all people can perform was no longer something I could do.

When I asked my husband to help me, he of course agreed and then I broke into tears and explained how humiliated I felt and how it was yet another thing that RP was preventing me from being able to do.  I hang onto as much independence as I can and hold onto it with a very firm grip; feeling the loosening of that grip is like loosing parts of yourself and your life bit by bit.  It is a devastating reminder of what the future may hold.

My husband was so understanding of my feelings and he now makes sure that we have the money every month so I can get pedicures.  For some people, going to the nail salon is a luxury, but for someone with RP, it becomes a necessity.  At least I get pretty painted toenails every two weeks.

Footprint

My footprint is heavy

With the weight of a life wasted

Overflowing with the stagnant debris of failures

The path before me is obscured

By the pitch of blindness

Riddled with the trickery of memory

A false and ancient confidence

That came before the darkness and the excess flesh

I stand stock still

No breath  No light  No whisper

My footprint is heavy

But it makes no sound

 

 

Fragile Threads

Life is always hanging by such fragile threads and I find myself carefully maneuvering through the tangled web they weave.  Always living in a whisper and treading ever so softly, so as not to upset the balance.  I am a mask of quiet and patience, until my urge to scream overtakes me and I retreat into the dark crevices of my mind, where the only person who can hear this dangerous side of my voice is me.

I always emerge, patient and quiet and ready to carefully tread life’s path again. Ready for the curve balls and the dangers that lurk outside of my vision.  Ready to embrace the reality that has become mine; the reality of blindness and darkness that covers me like a chilling whisper.  Even blind, I will not break those fragile threads.

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