Stories From the Edge of Blindness

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


October 2012

Glasses for Every Occasion

I got my first pair of glasses when I was 19.  It was a revelatory experience.  I had gone through all of my school years looking at blurry chalk boards and the shapeless faces of my teachers, and then suddenly the world came to life.  Street signs and expressions were readable, trees and leaves had texture and everything took on a crispness that I hadn’t ever really seen.  You may wonder why I waited so long to get glasses; the truth is that it had never occurred to me.  No one in my family wore glasses, so getting eye exams wasn’t something we ever did, and because I had seen the world through foggy eyes for years, I didn’t know it wasn’t normal.  Putting on those first pair of glasses was amazing and I kept the frames for years, saving them like a found treasure.  I don’t remember when I finally parted with those glasses, but there have been many pairs since.

I got my first pair of prescription sunglasses when I was 23.  They were beautiful dark tortoise frames with a bit of cat eye shape and flare.  It was an amazing thing for me to be able to see the world clearly and keep out the glare at the same time.  It must seem silly that this sort of thing was a novelty to me,  but paying a lot of money for sunglasses was an extravagance that would have been very looked down on in my family.  And, as I mentioned, I was the only bespectacled member of my family and still years away from my RP diagnosis.

When I was finally diagnosed with RP, I made a deal with myself that I wouldn’t ever feel bad about buying glasses.  I now have a drawer full of them.  Glasses for distance and for the computer.  Sunglasses with a very dark grey tint, with a dark brown tint and a pair with lightly tinted lenses for wearing indoors under bright lights.  I can’t function without my glasses, so I make sure I won’t ever have to be without them; I have back up pairs and pairs I only wear when  I am exercising.   I carry a big bag and at least three pairs of glasses at all times.

I leave the house worrying about being prepared for any circumstance.  What if I go out at night and get stuck somewhere until morning?  I can’t go outside during the day without sunglasses, so even at night, I make sure I have them just in case I get stuck.  Twilight is the most complicated because there is a period of time during the day when it is just too dark for sunglasses, but too bright for my clear glasses; I try to avoid being out at that time, but just in case, I have my lightly tinted glasses to get me through the hour when the day creeps into night.  I also keep the lightly tinted glasses with me because I never know how bright a store or restaurant will be.  I truly need and have glasses for every occasion. My days of small cute purses are long gone; good thing I always preferred a big bag.

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.


I haven’t been writing, but my mind is ablaze.  My life feels so heavy and my voice feels choked and uncertain.  I may, at times, wish that I could disappear, but I wake each morning and find that I am too much flesh and creaking bones and a head filled with words that long to be freed.  I will get there.  I need to believe I will.  Even the few sentences that get released are a beginning.  I am beginning again.

Lost Vision, Lost Voice

I haven’t been writing at all lately.  No blog, no poetry, no stories….just nothing.  I feel as if I don’t have much to say and when I search for my voice I find only silence and an emptiness that holds the weight of the world.  It is as if my voice is disappearing along with my vision and no matter how I grasp at the light, it flows, barbed and cruel, through my useless fingers.  I am trying to find ways to re-discover myself, but all that I see is unrecognizable and unwelcome. I am void.  I am a scar and a memory.  I am darkness.  I have no idea who I am.

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