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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.

A Hundred Secret Senses

Toward the end of last year, I started writing a bit more about the ways in which RP affects my physical life and tried to answer some questions.  One question that I haven’t answered, posed by two of my fellow bloggers and friends, Mandi and Tom, is about how my other senses are affected as my sense of sight is swallowed up by RP.

There are differing opinions about this.  Some people say that the idea of your other senses getting stronger is a myth, others think it is pure fantasy – who doesn’t want to be DareDevil after all? I think it is an inevitability, but also something that can be cultivated over time.

I didn’t realize the extent to which  I had expanded the use of my other senses until I was learning how to use Zelda (my white cane).  A lot of it happens without having to think about it.  Our brains help our bodies compensate for the things that are lost to darkness.  I haven’t found a way to adequately describe what my personal vision loss looks like – it is difficult – but it is as if it happens silently and secretly.  The progression of RP is, in my case, a slow process, and because I lived for years with it before my diagnosis, having no idea that I had the disease, I thought what I was seeing was normal.  In basic terms, you don’t know what you aren’t seeing because you can’t see it.  However,my brain must have been throwing signals at my other senses and pushed them into overdrive.  I was using sound and touch and even smell to help paint clearer pictures of my surroundings, and I didn’t even know it.

I think it is instinctive for most sighted people, and partially sighted people like me, to turn to their sight first in order to gauge the parameters of the physical world.  This is one of the things that makes it so confusing, and potentially dangerous, to be partially sighted.  Because I still have some usable vision, I automatically go to my eyes to get the picture, but after Zelda came into my life, I started realizing how quickly my ears started working to fill in the gaps.  Most often, the only way I know someone is near me or next to me is by hearing their voices, footsteps, breath, clothes rustling.  I hear cars in my blind spots that I never actually see.  I know when dogs are approaching because of the sound their tags make against the metal bits on leashes.  I use my ears to keep me alerted to possible threats on the street and to give me an idea of what the activity of the city around me must look like.

When I started working with Zelda, I learned that I could cultivate the use of my hearing to further help me.  I learned that it isn’t enough to just let my hearing do its own thing, but that I need to pay attention to the sounds, be vigilant in my listening.  Be patient.

The most significant day in my mobility training, in regard to using my other senses, was the day I was blindfolded and walked around my neighborhood.  You can read about it in further detail in my post “Blindfolded”, but that was the day I learned to let go of my eyes.  Without my vision to turn to, the sounds of the city came flooding in all around me.  With my ears, I identified certain intersections, I heard the hum of specific makes of cars and people coming from a block away.  I heard the buzz of electrical wires mingling with the traffic, and birds communicating as if they were circling my shoulders.  I wish that I could say that I had suddenly developed bionic hearing, but what happened is that I was forced to pay attention to the sounds some people are able to disregard because they can rely on their eyes.

As all things, the cultivation of using sounds to help me navigate the world is a process.  Some days I walk down the street with Zelda, eyes closed, and allow my other senses to kick into full gear.  Most days, I still fall into the habit of turning to my eyes for answers, but I am now more aware of the sounds that lay beside and beyond my limited field of vision.  I listen like I have never listened before.

I know there must be things that I miss, questions that I don’t answer or that crop up from certain posts. I love the questions, so please don’t hesitate to ask.

*Note: The title of this blog is actually taken (in all but one word) from a book by one of my favorite authors, Amy Tan, called “The Hundred Secret Senses”.  There is no correlation between this post and the book, beyond the title, but I wanted to give credit where credit is due, and turn you onto Amy Tan, if you aren’t already familiar with her.  

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Chantarelle’s Notebook

I am super excited to have 3 of my poems in Chantarelle’s Notebook.  A  huge thank you to editors Kendall and Christina!  You can read the poems here.

Frail

I was determined to become more disciplined, more succinct in keeping my blog alive.  I was going to post twice a week. I have a number of blog posts in the making. But I forgot about the ways that life creeps up and grabs me by the throat, dashing whatever lofty plans I may have conjured up.  I have imagined myself as so many things, believed myself to be so much more than I am.  I have accepted illusion over reality, climbed into the sounds of myself breaking and shattering, as if these were acts of bravery.  I convinced myself it was strength, believed that I was strong, but my reflection shows a woman who is frail and swallowed up by shadows.  Time and again I am a disappointment to myself.

I have deemed the machinations of my mind defective, deceitful and irreparably flawed.  I have tethered myself to affliction, called my reality depression, but perhaps the threads that comprise the fabric of who I am have always been weak and frayed. Perhaps blindness is not only my physical affliction, but my emotional and intellectual affliction as well.

I have called myself a kind person, because kindness is the only thing I believed gave me value, but I am not always kind.  I have called myself a good friend, but I am not a good friend.  I am the friend who disappears, who retreats from the world into selfish and silent spaces.  I have called myself a good wife, but how can I be a good wife when the weight of my existence is a burden? I have called myself an equal, but how can I stand next to someone when my steps are always too small, too timid?  I have called myself smart, but how can I be smart when I understand so little.

I don’t write these things, ask these questions, to be reassured of an opposite reality, but to capture images and expression from the disappearing spaces I step into with abandon.  I allow my breath to become a kind of silence that numbs the ache to escape the shackles of who I am. I release the weight of my skin and fall into who I have always been, rather than who I think I am meant to be.

We all travel on paths that veer and rise and plummet.  We all grab onto hope and search for love.  We all wear masks.  It is in the removing of those masks, in those moments of darkness when the truth of my frailty lays bare like a wound,  that I see through my blindness, and  fear that without it, I am nothing.

February Image

I am determined to write an actual blog post on Wednesday, but for now I will offer a bit more poetry.  My contribution to the February Visual Verse challenge is now up on their site.  1 image, 1 hour, 50 to 500 words.  You can read it here.

Poem in Foxglove Journal

I am thrilled to have another of my poems in Foxglove Journal. My gratitude goes out to editor, Elizabeth Gibson.  This one is very different from my usual stuff.  You can check it out here.

3rd Poem in Anapest Journal

I am honored to have a 3rd poem out today in Anapest Journal. A big thank you to editor Veronica Bruce! The poem is, “Guru“.

2 of 3 Poems

I am super happy that Anapest Journal has accepted 3 of my poems.  The first was published yesterday and the second is out today.  It is called Sleep and Squalor.

Poem in Anapest Journal

I wasn’t expecting this one to come out today as well, but I am thrilled!  My huge thanks to editor Veronica Bruce!  3 of my poems will be in Anapest (a part of The Paragon Journal); this one is called, “My Mother’s Breaking Body”

Poem in Amaryllis

I am super excited to have my poem in Amaryllis.  A big thank you to editor Stephen Daniels!  You can read the poem here.

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