Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


May 2011


We all have heroes; people we look up to for their courage, kindness and strength.  One of my heroes was just three years old when I was born.  He is my brother John.

John has always been one of the smartest and sweetest people I have known, but he is also the person who taught me what it means to be truly strong in the face of adversity.  From the time he was a little boy, my brother has been faced with more challenges than you would imagine anyone could handle. He has had too many rare illnesses to mention and through every battle he manages to stay positive.  He keeps his sense of humor and he soldiers on no matter what.  And he survives.

When I was diagnosed with RP, I thought about John and how strong he has remained through all of his hospital stays and mystery illnesses.  I looked to his example to help me weather the storm of the unknown that is RP.  I feel blessed to have him for a brother and so grateful for the strength and support that he has given me.  In the moments when I have felt so alone with my RP and so misunderstood, I have always been able to turn to him knowing that he get’s it….and then some.

I love you big brother.

Tiny Terrors II

So, it seems my Tiny Terrors post was a bit unfinished; sometimes I forget that just because I know the conclusion of something, doesn’t mean other people do.  Where did it end…….ok, on the bed in the dark, panic attack, no more Top Chef………

I stayed in the dark for what felt like hours; eyes shut tight and mind racing.  I was so afraid to open my eyes to that demolishing light; so afraid that this time the change would be permanent.  I imagined having to adopt my sunglasses as a full-time appendage rather than just a means of fashionable protection from the sun.  I wondered if I could get used to watching the television or reading with half the images distorted and burned white.  I wasn’t ready to face such a blatant change to my vision; the distortion was somehow so much more terrifying than the darkness.  In darkness I can hide, but in the bright distortion I felt impaled and vulnerable.  Trapped.

I knew I would have to open my eyes sometime; face whatever reality waited for me.  My husband was texting me from work.  I had to answer him.  I rolled over and grasped for my phone on the side table.  I opened my eyes.  My gorgeous blurry room had returned to normal.  The tears poured down my cheeks.

Little House

When you get hit, as an adult, with something like RP, you inevitably start to reflect on your past and possible signs that might have been there to indicate something was amiss; both physical and psychic signs.  As a child, I was obsessed with Little House on the Prairie.  I loved the little schoolhouse and the joy of life’s daily triumphs, but I really got hooked when Mary started going blind.  I remember watching as a kid and waiting with bated breath during the week between shows.  I needed to know what was going to happen to Mary.  Would she need new glasses?  Would she have to go to the big city on the train to see the specialist?  Would she go blind?  I felt somehow connected to her plight and I had no idea why.

Years later, in my late teens and early twenties, I started watching Little House re-runs with my friend Lisa.  We would drink cheap wine and smoke cigarettes and watch Mary going blind over and over again.  At the time, we both concluded that going blind was definitely preferable to going deaf because a life without being able to listen to music seemed to be pretty much not worth living.  And, blind chicks got to have hot blind husbands like Adam (Mary’s husband).

Little did we know I would be facing the reality of going blind just a decade later.  Maybe I unconsciously knew that blindness would weave itself into the fabric of my future as it had woven itself into the fabric of my childhood fantasies.  Or maybe I just loved the drama.

Tiny Terrors

There are periods of time in the Purgatory of Sight when weeks can pass without event and you seem to be settling as comfortably as possible into your current state of vision.  Then boom, something comes (literally) out of your blank and seemingly empty left field and knocks you flat.  The other night I was working out in my back room (I don’t do the gym thing)  without my glasses on; after a while you learn the routine so well, you don’t have to see the instructor anymore.  I finished the work out, took a shower and settled in for an enlightening evening of American Reality TV, but when I turned the tv on I couldn’t see it.  Well, I couldn’t see all of it.  No matter what channel I turned to or what angle I watched from, the whole left side of the screen was masked in a bright light, obscuring faces and words and colors.  I was terrified.  I started thinking that this was the beginning of total vision loss, or perhaps I was being punished for not wearing my glasses while working out to one of my many DVD’s (which by the way I could see as well as I can see something without my glasses).  So what happened between the workout and the TV?  Was it a sign that I shouldn’t be watching reality TV?  Had I been exposed to toxins in my shower?  Was I getting a sneak peek at what my future was literally going to look like?  I turned off the TV and fell into a mini panic.  What would I do without Top Chef?

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