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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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falling

Everyone Falls

Everyone falls.  Everyone daydreams and falls into states of preoccupation, falls into the arms of another person, falls to the ground.  Can you remember the last time you fell to the ground?  I know it happens, but how often?  Is it a story you tell about that one time you fell and were so fucking embarrassed?  Or maybe you cried?  Did you hurt yourself?  Were you drunk?  There is no judgement here. I have fallen and been embarrassed and cried and hurt myself, and yes, I have been falling down drunk. But, the falls that shake me the most, are the falls that can only be blamed on RP.  Continue reading “Everyone Falls”

Earth and Sky

The sky offers me value, a sense of worth, a shroud to cover all the secrets that can never be told. The old thoughts, the familiar ones, appear like petals that soften the earth, give a fragrance that draws me into the glory of falling.  The landing is all barbs and voices tinged with rage.  The ground reminds me of the failings of my flesh, the rot of my mind.  It exposes my dying eyes to spikes thrown like lightning from the sun and flays my hope of becoming.  My breath is heavy and putrid in my mouth.  I balance on breaking feet and knees that hold the weight of being nothing. I swallow my words like wine, desperate for euphoria and meaning.  Desperate to be anyone but me.

Eating Barbequed Iguana

I fell a few weeks ago, on the sidewalk, while gawking at another new group of hideous town houses that are being built in our neighborhood.  When I fell, I cried, not because it hurt, but because I felt humiliated, broken, slapped in the face yet again by RP.  My depression and self loathing voices took center stage and told me I was useless and really shouldn’t even be outside if I can’t manage to walk a block without falling down and scraping my knees.  I wanted to hide, from the RP and the day and the world.  I wanted to hide from myself, pretend I was graceful, dream I could float.  My sadness turned to anger and I stumbled home, terrified that every step may be the one to send me back into the unwelcome embrace of the pavement. Until very recently, this had been my usual response to falling.
Continue reading “Eating Barbequed Iguana”

Road Burns

I shared a Facebook post this morning from a fellow RPer which joked about inanimate objects exhibiting hostile behavior toward humans.  I often post these kinds of things, in the spirit of camaraderie and to give some understanding, through humor, to those who don’t know what it is like to live with RP.

I know that everyone has accidents.  Everyone bumps into things, trips and even falls on occasion.  I often get the, “that happens to everyone” remark when I talk about my collisions, bumps and spills.  But, when you have RP, it isn’t the same; it happens way more often and every time it happens it is as if  the door, floor, wall and RP are all slapping you in the face.  I have been cut, bruised and even broken bones because I didn’t see something that came upon me as if out of nowhere.  Today, it was the curb.

I was walking my pugs, Blossom and Jade, to our neighborhood park, and to get to the park you have to cross a busy street.  There is a stoplight, so it isn’t usually treacherous and I have crossed at this particular intersection so many times, I thought I could make it across without a major scan of my surroundings.  So, I started to cross the street, double dog leash in hand, when my youngest (only 10 months) decided it was play time.  I rushed to separate the dogs and get out of the intersection, and before I knew it, I was doing a tango with the curb and falling like a steel brick onto the sidewalk. The irony of my earlier Facebook share was not lost on me, even as I picked myself up off the ground.

My injuries were pretty minor this time.  I got a couple of skinned and bloody knees and a solid dose of reality and shame, but I still went to the park and got to watch my girls play.   it was just another day in the arms of RP and another intimate moment with the pavement.

Wounds

When you have RP, you literally become one of the walking wounded.  Walls, chairs, tables, foot stools, fire hydrants, small children, shopping carts, wet floor signs, shoes, cupboard doors, store mannequins and so much more, jump out at you from seemingly nowhere and the result is often injury.  I am almost always bruised from bumping into things during the day, and often have scrapes as well.  Most recently, I seem to be on a roll of injuring my head and face.

My lower field of vision seems to be where I run into the most trouble. Just to clarify:  If I sit with my hands in my lap and slowly raise them in the air, I don’t see even a glimmer of them until they are level with my bottom lip.  I am told that most people can see their hands in their laps while looking straight ahead.  So, as you can imagine, when the world below is pretty much non-existent and the world above and to the side is just barely there, disaster is imminent.

My two most recent head injuries occurred while attempting to pick up dog toys from the floor.  The first was when the huge black dresser in my bedroom jumped up and smacked me quite hard on the forehead.  The room spun round for a minute and stars danced in front of my eyes and then the pounding began.  Luckily, I was left with only an unsightly bump and a lingering headache.  The crazy thing is that I know the dresser in there, I just have some serious spacial relationship issues and of course that pesky blind thing.

The second collision was with a wrought iron chair in the living room.  I bent down (apparently quite quickly) to retrieve a stuffed dragon from the floor and the next thing I knew, the bridge of my nose had become intimate with the cruel iron of the dining room chair.  It wasn’t the first time this particular chair had jumped rudely into my path, but it is usually my toes and feet that suffer injury from the chair’s legs.  I have been meaning to get rid of that damn chair.

The culprit involved in my face injury was a glass cat food bowl.  I suffer from a touch of OCD and I have to pick up the cat food bowls and put them in the sink as soon as the cats have finished eating, and I sometimes do this with a bit of panic.  On the morning of the collision, my husband was home and wanting to help out; little did I know, he had already gone to pick up the cat’s bowl and because he was bent down I of course didn’t see him.  I was bending down to pick up the bowl and he was standing up with the bowl and the result was a collision between my eye and a glass bowl.  I have to admit, I freaked out a bit about this one.  Because I have such an array of issues with my eyes, any injury, no matter how small, to either of my eyes makes me freak out.  When the edge of the bowl made contact with my eye, I remember feeling a burning pain and pressure and everything went blurry.  I immediately started panicking and crying and my poor husband felt terrible, even though it was so not his fault.  Eventually, I calmed down and my vision cleared and the burning stopped and all I was left with was a cut on my nose and a bruise in the corner just outside my eye.

Sometimes, especially at home, I move through the rooms as if I can see normally; I am going to have to seriously start thinking about moving more slowly through the world.  My face and head will thank me, not to mention my toes, feet, fingers and hands.

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.

Signs

Whenever a person discovers something about themselves as an adult that has been present or growing since childhood, they inevitably think about the signs they may have missed; things that would have tipped them off sooner, given them a clue to the journey ahead.

A few months ago, I was going through some old photos from when I was a small child.  I came across a picture that was taken on a beach in Mexico when I was about three years old.  My eyes were squinted against the glare of the sun and I was reaching for a pair of sunglasses that were perched on a rock nearby.  I looked desperate to escape the bright sunlight and it is a look I recognize.  Growing up in California, my family was always going to the beach and wanting to bask in the sun, but I always preferred the cloudy days.  They all thought I was strange or moody, but even then, the sun actually hurt my eyes.

As I got older, I was called clumsy because I was always tripping and stubbing my toes and knocking things over. I couldn’t hit a softball in P.E. class or catch  the ball when I was forced into the outfield.  I appeared careless, unathletic, always in a day-dream, but I was actually going blind.

When I was learning to drive, I remember being in the car one afternoon with my mom, who began shrieking that I was driving too close to the edge of the road and that we were going to go off the cliff.  My mom was prone to drama and there wasn’t really a cliff, just a five-inch drop off the road into the dirt.  She thought I wasn’t paying attention, but I actually couldn’t see the side of the road.

Into my 20’s I continued to trip and fall and live up to my reputation as either the clumsy day dreamer or the girl who has had too much to drink.  I had a friend tell me I was the only 24-year-old she knew who actually fell down and skinned her knees.  I missed curbs and crashed into street lamps and nursed the bruises that peppered my skin.  I thought perhaps I was drinking too much, but actually the edges of the world were disappearing and I didn’t even know it.

Today, the signs are of things to come rather than pre-cursors to what has arrived.  I wait for the markers of my deteriorating vision, notice how the glare of the sun gets meaner and how once effortless tasks are becoming more difficult.  And some days I am moody.  Some days I am careless.  Some days I dream.  And some days I drink too much.

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