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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.

Month

June 2012

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.

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Of All the Super Powers…….

When people get up the courage to ask me questions about what it’s like to be going blind, one I get a lot is” do your other senses get stronger as your sight gets weaker “? It is as if people somehow want to believe that going blind gives super powers to the other senses. I suppose that some of my other senses do seem a bit sharper because I put them to more use, but if I had to say I had a super power sense, it would most definitely be my sense of smell.  Of all the super powers to get, I get the super powered nose.

It is uncanny really.  I can walk into my apartment or someone else’s house and immediately detect any odd smells.  I can smell the tiniest bit of gas emanating from the stove or the order of fertilizer that is being used in a garden up the street. I smell the trash ages before any normal person would think to take it out and I know which one of my cats has recently been in the liter box because my nose differentiates their different odors. But it isn’t all bad smells.  I can also detect the perfume of flowers in the air from half a mile away and smell bread baking in a restaurant that is up the street and around the corner from where I live. I can tell you what kind of shampoo the girl in the back of the bus uses and I can smell the comforting scent of my husband from across a crowded room.

I think I have probably always had an acute sense of smell, but I didn’t really start to notice its prevalence until I knew I was going blind.  Maybe it was my way of trying to feel more whole or less broken.  My eyes may be shot, but wow does my nose work well.  Maybe I wanted to feel special rather than different. Maybe I was a blood hound in a past life. Or maybe I really do have the smelling super power.

So you better beware,  I may not be able to see you when you come into the room, but I will most definitely smell you.

Forgettable

I think I have always been rather forgettable.  I even got a disease that people seem to easily forget.  I attended a family function recently and had to leave early because of problems with my eyes, and everyone but my husband seemed surprised by this.  I think my family often forgets that I am going blind as they often seem to have forgotten about me in general, for as long as I can remember.

I am the youngest of three children, the oldest of whom is a veritable super star and the middle who has been plagued by illness since he was 18.  I was conceived to save a failing marriage and failed in this task I was born to.  I have always been not quite pretty or smart or memorable, and never really wanted so left to my own devices.  Although sad in some respects, I have been afforded the freedom to have all kinds of fun and to live a life of pure and unadulterated self-expression.

I am in my forties and married to a wonderful and boisterous Irishman.  I am heavily tattooed and change my hair as it suits my mood.   I never followed a specific career path, even though I come from doctors and lawyers and general success types. I have lived all over the country and claimed a dozen professions.  I am an artist and an individual, but in my family I am the shadow who gets the passing glance and is as quickly forgotten.

My family, when thrown together, forgets that I am around and forgets that I am going blind, but I don’t have that luxury.  I live every day knowing that my eyes are failing me and that I no longer have the luxuries of driving or working or being able to walk through the world with any kind of grace or ease.  I suppose that between my sister, who is constantly revered and celebrated and my brother, who is a constant patient, there is just nothing left for a shadowy girl who has never been much of anything.  In my family, if you don’t stand out, you don’t stand a chance.

I have dreamed of disappearing and running away.  I plot ways to get out of family functions.  If I don’t show up, I won’t be missed.  And if I do, I will be brushed to the side and forgotten. But, I feel guilty if I don’t show up.  I don’t want to hurt anyone, but then no one even knows I am there.  I can’t win and so far I haven’t found a way to escape. I suppose what I can do, what I have always done, is to simply write. I write about family and shadows and I write about going blind.

I write about going blind because I cannot forget. I write about going blind because it is part of the fabric of who I am, who I have become and who I will be .  I write about going blind because it is my reality and my strength and my fear.  I write about going blind because it is my truth, but no one in my family reads what I write or subscribes to this blog.  I am an after thought.  A back burner disaster.  Nothing.

Reflections off Water

My husband and I took a whirlwind journey this weekend to attend a family function and I have to say I wish I could have left my RP at home.

We live in Los Angeles and the event was in San Francisco, so we decided to drive.  It is about a six-hour drive and we like the time together in the car chatting and singing and laughing, but it also means a day spent basically outside and even with sunglasses my eyes protest having to be subjected to so much sun time.  When we have done this drive in the past, I usually get a few hours upon arrival to rest my eyes  in a darkened room, but this time we had to go directly to the event.  The venue was beautiful, with windows facing a lake and sun reflecting off the water through the windows. A totally beautiful nightmare for someone like me.  Sunlight reflecting off water through windows is akin to having lasers beamed directly into the center of my eyes; even with my oversized sunglasses, it hurts like hell.

So, there we were, sitting in the front row closest to the windows, my eyes already feeling sore from the 6 hours in the car, and I am feeling like a full-blown freak because I am the only person in the room who is wearing sunglasses.  Did I mention it was a religious service?  We were there to celebrate my niece’s Bat Mitzvah and between my tattoos and my big Jackie O sunglasses, I don’t think I made a very good impression on the Rabi.

The service itself was absolutely beautiful and I shed many proud Auntie tears, but it was also over two hours long and by the time it concluded, my tears were partly from pride and partly from pain.

If you have ever attended a bat mitzvah (this was my second and my husband’s first), you know that a huge party always follows the lengthy service and as family we were expected to stay.  I knew I wouldn’t be able to make it to the end and started planning the quickest possible exit.  My eyes hurt so much I could barely keep them open.  I decided that a quiet retreat would be the best way to leave, so Joe and I went off as if to take a walk and disappeared into the early evening.

I have to admit I was incredibly relieved to be out of there, away from the pressure of being the dumpy blind black sheep in a family of diamond studded song birds, and away from the assault of sunlight reflecting off water.

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