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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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sunlight

Tunnel Vision

I hate the term “tunnel vision”.  It has always scared the crap out of me, and until recently, I really had no idea what tunnel vision felt like, even though I supposedly have it. As I walk around Hollywood, I don’t get the sensation that I am walking through a tunnel; I just walk and scan and suffer the occasional spill that brings my RP crashing down on my heart.  As I have said again and again, I don’t know what I don’t see or what to expect from my surroundings; but that is when I am walking.

During the summer, I had the opportunity to go swimming in a pool with some friends.  I loved to swim as a child, but hadn’t been in years; since before my RP diagnosis. I thought  I would never be in a pool again, because of being unable to be outside without my Jackie O’s. But, I found a pair of over sized tinted goggles that ended up protecting my eyes beautifully. I was elated to be going back into the water.

Looking at the sparkling pool, I was a bit nervous so ventured slowly into the soothing depths. I felt 9 years old again; excited, I dove down into the water and the silence and for the first time I knew what tunnel vision was.  Under water, the pool became a narrow passage through which I swam, holding my breath, until my out- stretched fingers grazed a wall. It was like sinking into a hole filled with shimmering silence; I lost my direction and my bearings. The walls disappeared and the tunnel closed in around me. The feeling was both terrifying and curious.  I dove down again and again to embrace the sensation and a new understanding of my disease. I had finally experienced tunnel vision.  I understood and I was no longer afraid.

Preparing for Blossom

There are so many things that have to be done to prepare for bringing a puppy home. The house has to be puppy proofed so she won’t get into cupboards she shouldn’t and all the necessities have to be purchased, like food and bowls and toys and a harness and a leash and a crate and beds and the list goes on.  If you have RP and are partially sighted, there is a whole other set of considerations and extra things that have to be acquired to make sure that the puppy will be safe.

When we started talking about getting a dog and then specifically Blossom ( she is a ten week old pug puppy that we rescued from a great local rescue organization called Pug Nation), I had to think about what it would be like being partially sighted and responsible for a dog.  I decided that I was up to the task and that I wasn’t going to let RP get in the way of something I had dreamed about for a very long time.  I knew that my two major issues would be keeping visual track of her while she tears around the house and being able to see her when walking her outside.

Inside, I knew that I would have to rely heavily on my hearing to keep tabs on her whereabouts; thankfully, pugs are cute little snorters and I can hear her sniffing around when I can’t see her.  I will also be getting a little bell to attach to her harness so I can hear the bell when she is moving around.  Sometimes, I do lose track of her because she is super fast, but it doesn’t happen often.  This experience is teaching me how adept I have become at being hyper aware of my surroundings and keeping what I have left of my sight, “peeled”.

We haven’t been able to tackle the outside issue yet because Blossom still has to get her final series of shots, but I am ready for it when the time comes.  I bought an array of baseball caps to help protect my eyes from the sun when I am walking her and I will take it slow and always keep her on leash.  I will make sure she is always safe.

We have only had Blossom a week, but she has already changed our lives in the most amazing way.  I love my new little girl and I look forward to all the amazing years we will have together.

Between the Barbs

While reading over some of my more recent posts, I kind of wanted to tell myself to stop bitching.  I suppose that I have been in a bit of a barbed mood lately, but there are wonderful things that happen between the barbs.

On the day of my RP appointment, my husband had jury duty and so couldn’t come with me.  He was waiting to hear if he had been selected and I was waiting to hear if he would be able to pick me up after the myriad of eye tests.  After the final eye exam with Dr. Sarraf and just before my last test ( an OCT), I got a text from my husband telling me he had been released from his civic duty and would be able to pick me up.  I was so happy and so excited to tell him of the positive outcome of my appointment.  I also got a text right about the same time from my dear friend Patricia, telling me that she was thinking of me and sending her love.  I felt loved and supported and I knew I wasn’t alone in my bizarre vision journey.

When my husband came to pick me up, I got into our truck and told him the good news and he became very emotional.  I have never felt so loved and cared for in my life. He seemed even happier than I was to hear that my vision is stable. I know that no matter what happens in this life, I have him with me to share all of it and I feel like the luckiest woman in the world.  He makes me feel like I have value, sighted, blind or in between.

When I checked facebook later that evening, another of my very close friends had posted something asking how my appointment went and two of my other dearest friends wrote the most beautiful comments here on wordpress.  I knew they were thinking about me and were genuinely happy to hear that all was as good as could be expected.

I feel loved and blessed and so fortunate.

Regarding another subject, The Sun: I know I write a lot about the sun and the heat and not entirely loving my current city, but I also have to say that all the time I spend indoors is in an apartment that I love.  It is the home that I share with my husband and it is my very favorite place to be.  I also have a lot of people in my life who are super generous and always offering to pick me up or drive me places, and my husband would be there in a heartbeat if I needed him.  And, my husband also hates the sun and the heat so we are entwined in a joint mission to move to a cooler climate.

Although I sometimes feel so very alone in this slow trek to blindness, I know that I am not really alone.  All I have to do is reach out and there will be arms to comfort me.

I Feel Sweaty, Oh So Sweaty

After I surrendered my driver’s license and was forced to become reliant on the completely unreliable transit system in Los Angeles, I  discovered that my days of dressing up and actually arriving places looking and feeling nice had disappeared right along with my sight and my ability to drive a car.

Los Angeles is hot and the damn sun never seems to stop shining.  Most days, I avoid going outside while the sun is raging its assault on the dusty streets, but venturing out is sometimes necessary.  The venturing days usually require some lengthy exposure to the sun and the heat, which offend not only my eyes, but also my skin and all the beautiful artwork that covers it.

Getting ready to go out always seems to take me forever, and it isn’t because I am getting dolled up but because I am trying to swallow my dread. I don’t like the feeling of sun on my skin, so when I go out, I get covered up. I prefer to wear long sleeves to protect my tattoos and a hat to protect my eyes.  I usually procrastinate by the door because I know the minute I open it, I will begin to sweat.

By the time I reach the bottom of my stairs and head out into the street, I already feel like I can’t breathe.  The sun overtakes me in a wave of utter misery and begins to suck the moisture out of my pores.  Every part of me feels sweaty.  I know my face must be taken over by a total look of disgust and the only thought in my head is getting out of the sun and into the air-conditioned shop or bus.

I know there is no possible way I will arrive at my destination looking anything other than damp and miserable, so I don’t even try to look good.  I don’t put on makeup or wear nice clothes. I don’t bother doing anything with my hair because even my head sweats and the hair sticks to my face under the constraints of my hat. I have forgotten what it feels like to dress up and go out to have a day of shopping or a quiet lunch by myself.  I only know the sun and the heat and the sweat.

I don’t mind sweating during appropriate activities like working out or gardening, but arriving at a restaurant in a pool of sweat just doesn’t seem right to me.  I know that there are more important things than dressing up and going out to lunch, but I miss feeling good about doing it.  I miss feeling pretty.  And most of all, I miss feeling free of all that horrible sweat.

 

 

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.

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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