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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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overweight girls

Fitting

I have always lived under a veil of darkness, so it seems fitting to me that I am going blind.  Even as a child I drifted toward sadness.  When I was six, I was asked by my teacher to write a thanksgiving story.  My fellow students all wrote stories about pilgrims and big festive dinners with happy shiny families, but I wrote about a turkey who commits suicide.  I have always wondered how I knew what suicide was at only six years old.  Why did I feel connected to sadness and discontent at such a young age?  Well, one thing is for sure, it isn’t a surprise that  I am the very sad middle-aged woman that I am today.

I feel as if I have spent my whole life trying to feel happiness and to hold onto it for more than a few moments.  I seem to always return to dark places and habitual longings to simply disappear.  I have dreamed of being anyone but me and felt disappointed over and over again upon waking in the same damaged skin.  I have yearned for darkness and now darkness is coming.  My eyes are failing me just as I have always failed myself and everyone around me.  It all fits so perfectly together, the tragic puzzle pieces of who I am or who I  have allowed myself to become.  I am wrapped so tightly in sadness and self loathing that I cannot breathe without their cruel touch; they have defined me for so long and my fight is gone.  The older I get the more easily I give up and give in.  I am waiting now.  Waiting to go blind.  Waiting for the world to disappear.  Maybe I will disappear too.

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

 

 

Defeated

I have been feeling incredibly defeated since a recent family gathering. Defeated by my inadequacies, by my failing sight and my 40 extra pounds.  I have been abandoning myself, night after night, to the comforts of Cabernet and waiting to feel a sparkle again, or at least a bit of a shimmer. Today is not that day.

I was working out at home this afternoon, like I do most days of the week.  I have a dance DVD that I particularly like and after some kickboxing, I decided to get my groove on a bit with the dance workout.  During the first segment, I did a bit of a spastic leap, landed strangely, twisted my ankle and fell.  I just sat there on the floor, sobbing and dissolving into waves of self loathing.  I felt so broken.  I felt like a failure; an uncoordinated, over weight failure.

I was devastated to discover yet another thing that I would never be very good at or that I would have to take extra care doing because of the damn RP.  I know it sounds like I have a bit of a fatalistic attitude, but I arrived at this injury already feeling so broken and useless that it didn’t take much to send me over an emotional edge. Most of the time, I do maneuver through my disease with a certain amount of strength and a refusal to let it beat me, but sometimes the reminders of how RP makes me vulnerable feel like too much to bear.

For a fleeting moment, while I was dancing, I felt free from myself and from my blindness.  I let my guard down and felt a clarity of body and motion and then I stepped off into the abyss that is my deteriorating vision, slammed back into the reality of my disease and crashed to the ground.  I had forgotten for a moment that I can’t just dance without thinking of the constant threat presented by obstacles that seemingly pop up out of nowhere.  I can’t be free in my body because my motion is chained to my blindness.

I know that this is how I feel just in this moment and how I will probably feel the next time I fall.  But, I will also remember those fleeting seconds when I was dancing and I felt free.  It is that feeling of freedom that will lead me to brush the tears of defeat from my cheeks and to dance again.

Habitual Fear

I have felt so silenced lately; by worry over the future and anxiety over the day-to-day.  I have totally let myself go.  It is as if I punish my body for what my eyes are doing, or maybe my eyes have led me to complacency about my overall health.  Maybe I am just a lazy fuck who is afraid to leave the house.  Or perhaps it is just this moment, this single moment clouded with self disappointment.

When I see myself through sparkling fantasy glasses, I am writing every day and materializing the sheer genius that is my book.  I am thin and gregarious and full of light.  So why is it that I feel heavy, as if the burden of who I have so long perceived myself to be is keeping me motionless.  I sometimes think that I keep myself isolated and unproductive out of a sort of habitual fear; safe in the misery and the dark and the quiet.  I get consumed by these dark days and turn to the arms of self-doubt; I chastise myself for not being better, thinner, prettier, for not writing and not living.  In my heart I know that all I want to do is write my book and there is even a part of me that can identify with the possibility that it might be really good and that I actually have something to say, but then the old tapes play; the tapes that tell me of my worthlessness and my failure to be anyone other than who I am.

When I was first diagnosed with RP, I had a fleeting thought that it was a punishment for having been so obsessed with my weight for so long.  I have believed for most of my life that being overweight meant that I was unlovable and without value.  I have been overweight for most of my life.  I always thought that people felt sorry for me when I walked into a room and I often turned down invitations because I was ashamed of my body.  Then came RP; then came the reality of going blind and dealing with all the day-to-day struggles of being different when all you want is to be invisible, to blend.  Isn’t going blind a bigger deal that the extra 20 pounds I can’t ever seem to shed? And does being overweight mean that I am not a good person, not a good writer, not good enough?  What the fuck does my weight have to do with my value as a person?  And yet I feel worthless, muzzled, squashed.  I keep hoping that what I see through the sparkling glasses will become my truth and that I will truly feel the value of who I am.  I hope that going blind will help me finally see.

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