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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.

It’s Right in Front of You

I was 33 when Dr. Heckenlively told me I was going blind.   After dropping the bomb, he took a vial of my blood to, as he so eloquently put it, “rule out syphilis”,  gave me a list of vitamins that might slow the progression of my disease, and sent me on my way. I felt like I had been punched, like I was lying prostrate on the floor and couldn’t breathe.  I was overwhelmed, felt clueless and afraid.  I had no idea what RP was going to do to my life.

When I first heard about RP, it was from a TV show, and a million miles away from my reality.  The TV program talked about RP being genetic and introduced families with multiple people affected by the disease; the first time it was suggested that I might have it, I ignored it because no one in my family even wore glasses, except me.  I soon learned that RP is most often genetic, but not always; there are a handful of us that are the sole proprietors of RP in our families, and in my case, I was completely unprepared for it.

I did my share of online research in the months before my diagnosis, but a lot of it was about the genetic aspects of RP; this gave me a false hope that I didn’t have it.  I read countless simplified descriptions of RP symptoms: Night blindness, loss of peripheral vision and eventually central vision, resulting in total blindness.   I am not a particularly sciencey (yes, I know that isn’t a word) person, but I will try to throw a little bit in here.  Basically, the retinas are made up of 2 kinds of cells (photoreceptors), called rods and cones.  The rods are responsible for low light and night vision, while the cones are responsible for color and detail.  There are way more rods than cones, and the rods are the ones that begin to degenerate first in a disease like RP; that is why we experience night blindness and a loss of peripheral vision.  I am sure this is a very rudimentary explanation, but hopefully you get the sciencey picture.

When most of us think about peripheral vision, we think about stuff that is seen way off to the side, or out of the proverbial corner of the eye.  The truth is, because peripheral vision is dictated by the rods and the rods are pretty plentiful, peripheral vision is actually most of our vision.  It is what you see all around you, not just way off to the side.

About six months after my diagnosis, I remember looking for a coin purse that I had dropped on the ground; I was looking all around, repositioning myself, but I couldn’t find it. The person I was with was perplexed and said, “it’s right in front of you.” The thing is, that phrase, “It’s right in front of you,” means nothing to someone with RP.  When you have RP, right in front of you can shift and change and disappear completely. It can seem to an observer that I am looking right at something, but if my eyes are directed just slightly to the side of whatever it is I am looking for, it may as well be a grain of sand in the ocean. Peripheral vision is huge and complex.

I have searched for my husband in our apartment, walking past his desk 10 times, and it turns out he has been sitting there all along.  When my dogs are standing at my feet waiting to have their harnesses put on for a walk, I have to scan the area several times to locate both of them.  In a restaurant, I never see the waiter trying to hand me a  menu, and glasses of water seem to materialize out of thin air.  If I drop something on the ground, I often have to ask for help to find it. RP comes with so many challenges that I could never have imagined, but I am learning to be more patient; to take the time I need to find things and not allow my frustrations to take control.

I am sure that I leave stuff out that people might be curious about, and I welcome curiosity, so please don’t hesitate to ask questions.

You can also find me on Twitter and Facebook.

 

 

 

 

 

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Seasonal Voice

I wasn’t going  to write about Christmas, but here I am at 6am on Christmas Eve morning, reading lots of posts about Christmas, and I felt like adding my seasonal voice to the mix.   Let me start by saying, I love Christmas!

When I was a child, my Mom adored being festive; she had boxes of decorations for every holiday and made sure that the rooms, windows and exteriors of the house were appropriately adorned.  Christmas was her favorite; although Halloween did run a pretty close second.  Every year, upon the arrival of December, my Mom would open the plethora of Christmas boxes, overflowing with elf figurines, tiny trees, dancing Santas, lights, paper cutout snowflakes and every other (non religious) Christmas decoration you could imagine, and transform our house into a seasonal feast for the eyes.

During the first week of December, she would bring home the tree.  She lit a fire and made pots of tea and we spent the day decorating the fragrant branches with ornaments that had been around since before I was born.  My moms exuberance about the holiday was catching and we couldn’t help but be swept away in it; she made the entire month of December shiny and joyful and fun.  We celebrated the season and the month of December, not just one day.  It was a celebration of life and of love; it was a time to wrap up in the comfort of home and family.  We were lucky.

My Mom never lost her love of Christmas, even when she got sick.  I was 13 when she was diagnosed with cancer, but even in the years when she was the sickest, she had a magical ability to conjure up joy.  For her very last Christmas, my mom was in the hospital, but she insisted that we celebrate.  We brought Christmas to her hospital room and she, as always, brought love and light.

8 days after Christmas, my Mom died.  For years, I couldn’t celebrate Christmas, and when I tried, it felt empty and wrong.  It was as if the light of Christmas had been extinguished with my Mom’s light. After her death, I slipped into darkness; I couldn’t breathe or feel anything.  Christmas became something to dread, because she wasn’t there to make it beautiful, to bring it to life.

I turned my back on Christmas, rejected its trappings and merriment, but time and love eventually brought me back into the arms of the season.  I came to a place where I could feel grateful for having known and loved someone as magical as my Mom, rather than just feeling the pain of her absence.  I started thinking about how lucky I was to have had a Mom who made Christmas so special. I was slowly coming around, and then, 9 years ago, I met my husband and found myself actually getting excited about Christmas. With my husband, I found joy and home, and I wanted to share a little bit of my Mom’s magic, which, I realized, had been with me all along.

 

 

 

The Light Conundrum

One of the first signs of RP is night blindness. The retinas are responsible for registering and responding to light, so when you have RP and your retinal cells are dying, they can’t tell your pupils to contract or expand according to the amount of light in the room. For example, most people walk into a dark movie theater and, at first, can’t see much, but in a few minutes their eyes adjust; RP eyes don’t adjust.

My first experience with night blindness happened not long before my RP diagnosis.  I had been in a bookstore for hours, day had become night, and my car was parked on a side street a couple of blocks away.  The first part of my walk was on a busy, well lit and heavily trafficked street, but when I turned the corner onto a darkened side street, the sidewalk in front of me disappeared.  It was terrifying.  It was like walking into shadows and not being able to escape.  Eventually, I walked carefully toward the light from a street lamp about a block away, and found my car.  It can sometimes be hard to understand, but another writer with RP, (Ryan Knighton) described it perfectly; he said that he could see the lights, but not what they were meant to illuminate.

That night, the night the sidewalk disappeared, I was freaked out, but I thought I just needed new glasses; I had no idea that I had RP.  I also had more than twice the amount of healthy retinal cells than I have now, so my retinas worked a lot better and the night blindness happened in brief patches.  I got in my car that night and drove home, but I began to notice that I was having increased difficulty driving at night.  It wasn’t just the darkness, it was also the lights.

On the flip side of night blindness, there is light sensitivity. Just like the retinas don’t respond to things getting darker, they also don’t respond to things getting brighter. When most people walk outside into a super sunny day, their pupils will contract to protect their eyes from the light; RP eyes let all the light in.  For me, light sensitivity has always been a bigger problem than night blindness.  I call it light (as in, man, that is a bright light)  blindness with spikes.  That shit hurts.  You know when you get your eyes dilated and any little bit of light feels like knives in your eyes?  That is pretty much how I feel all of the time.  I can’t go outside without sunglasses and a big hat.  Occasionally, I will be rebellious and leave my hat behind, but the minute a hint of sun blasts through the top or sides of my sunglasses, I am totally blind and in pain.  And, it isn’t just sunlight, it is any bright light.  I can remember coming home from work, after a day under fluorescent lights, and collapsing on my couch, in tears, because my eyes hurt so much. I can’t read for long periods of time on any device that is back lit, because the light is too hard on my eyes; there are some days when I have just used my eyes too much and I pay for it the next day. Basically, sun and bright lights are my enemies.  Give me an overcast day full of rain, and I am a happy girl.

I have talked to other people with RP who don’t have the level of light sensitivity that I do, and those whose night blindness is much worse than mine.  I think it is important for me to stress that every case of RP is different; we experience symptoms in different ways and the rate of vision loss is different for everyone.

If you have any questions, about the RP light conundrum, or about my RP experience in general, please don’t hesitate to ask.  I actually really like having the opportunity to address specific queries, if I can.  Thank you for being a part of my story.

You can also find “Stories from the Edge of Blindness” on

Twitter and Facebook

 

Tiny and Immense

When I was first diagnosed with RP and thinking constantly about what it would be like to be blind, I was gripped by the spikes of claustrophobia.  I imagined that the world would become tiny, the darkness choking me and snatching my breath; the term tunnel vision, which is used liberally in describing what it is like to have RP, absolutely terrified me.  The thought of it was constricting; even writing this, I am holding my breath, as if doing so will stave off the inevitable. The day of my diagnosis was the day I started waiting for the world to close in on me.

I have always been somewhat addicted to darkness, prone to seeking out its path and wrapping myself up in the comfort of its fingers, but in the 15 years since my diagnosis, darkness has taken on new meaning and form; it has left the confines of my mind and heart, and settled into my eyes. I have come to realize that the reality of darkness, in relation to blindness, is the opposite of what I originally feared.

Now, the darkness feels immense. It makes me vulnerable and exposed rather than protecting me, like it did before RP showed up.  The darkness swallows the edges of everything and comes into a twisting life of its own.  In the dark, I feel as if I am always about to fall and whatever space I am in loses its definition and its structure.  It is unsettling.

The most recent experience I had of total darkness, was during my ERG, which you can read about here. During the ERG, the darkness came to life; I could see its tendrils twisting around me, escaping boundaries that only exist in the light.  I realized that the darkness is limitless; it has no parameters and nothing about it is predictable.  It takes something compact and at once expands and erases it.

Although I am still afraid of  what continued vision loss will do to my life and to my relationships,  I arrived at a place of acceptance a long time ago.  I suppose I have grown to both love and fear the darkness.  RP has been a part of my life for a long time; fighting it is futile and although I never welcomed it, blindness is a part of my fabric and I accept its texture.

I want to help expand peoples understanding of what it means to be blind and how a disease like RP works, so I am going to write a series of posts about the mechanics of RP and how it has manifested itself in my particular case. The first in the series, called, “What do you See?“, I posted a few days ago, and I will continue the series next week.  I hope that anyone who reads “Stories from the Edge of Blindness” feels free to ask questions; if there is something you are particularly curious about, please let me know and I will write a post about it. Thank you for reading and for being a part of my crazy road to blindness.

You can also find me on Facebook and Twitter

And, if you are in the mood for some pictures of some seriously cute pugs, you can find my babies, Blossom and Jade, on Instagram.

Poem in Literary Juice

I am super excited to have one of my poems in the December issue of Literary Juice.  Thank you editor, Sara Rajan, for including me in your amazing magazine.

What do you See?

Most of the time, I find that people seem reticent to ask about my vision; I don’t know if it makes them uncomfortable or if the concept of someone being partially sighted is just too hard to grasp, but the presence of my blindness often takes up a strange space in the room. When people do ask, I actually appreciate it because it gives me an opportunity to explain how RP behaves, and also because it offers a window into what I am missing visually, by seeing what others see.

Sometimes, I’ll be walking down the street and it will occur to me that I am seeing something in a way that may be different from other people. The other day, my husband and I were out walking the dogs; he was walking about 5 feet in front of me and I was looking at the back of his head, when I realized I could only see the back of his head and a bit of the tops of his shoulders.  I asked him to stop and look at me from behind at the same distance; he could see all of me and cars parked across the street and buildings to our left and a whole lot more. When you have RP, but still have some usable vision, it can be easy to forget how much you are missing visually.  I find myself lulled into a false sense of security, so I think it is good for me to get a good kick in the pants from reality when I slip off into space.

When asked what I actually see, there are a couple of tricks that I use most often:

  1. Look straight ahead.  Stretch your arms out to the side as wide as they will go, thumbs pointed up, then slowly bring them in and stop when you can see your thumbs.  You may not have to move them at all, or maybe just a little bit, before your thumbs come into view.  When I do this exercise, I see my thumbs when they are about 7 inches apart.
  2. When you are sitting in a chair, put your hands in your lap. Keeping one hand flat, palm parallel to your lap, start raising it and stop when you can see it.  You may have to raise your hand a little bit to see it, or you may see your hands resting in your lap. When I do this exercise, I don’t see my hands until they are in line with the bottom of my nose.

These exercises are by no means definitive, but they do give an idea of what it’s like to live with diminishing peripheral vision; and, in the world of RP, I actually have a good amount of vision….I think. Every case of RP is different.

I thought I might write a series of posts that give a better idea about the mechanics of RP.  If you found this post interesting or helpful in gaining a better understanding of RP, and you would like me to write more, please let me know.  If you have any specific questions, please ask.

You can also find me on Facebook and Twitter.

 

Embers

The thing with fire is that it is unpredictable.  An ember can become a rage of flames that devour hillsides and homes, a torrent of fear that reaches its fingers into the sky and covers the landscape in ash.  Fire doesn’t discriminate; it can’t be reasoned with or cajoled.  But, it can be contained, by the tireless bravery of fire fighters who battle an enemy that knows no mercy.  I am so very grateful for all of the men and women who have been fighting the fires that filled Los Angeles with smoke and fear; it is because of them that the beast has been quelled.

My parents are safe and the home that they have shared for 41 years is intact.  It was a terrifying few days; first waiting for them to evacuate and get to my apartment.  I was so glad to see them safe when they pulled into our driveway.  Then we waited for news about their house and for the announcement that they could finally return home. My parents are in their 80’s but they are strong, resilient and incredibly stubborn; when they left my apartment last night, they were pale with exhaustion, but so relieved to be going home.

Fires

I live in Los Angeles and in case you didn’t know, we are basically on fire.  My parents live in one of the areas that was evacuated and they are staying with us, in our apartment with our 2 cats and 2 dogs, safe from the fires.

My thoughts are a bit scattered right now and it is chaos here, so I will be away from the blog world for a few days.

I hope everyone is having a lovely start of winter, and if you are also in California, please stay safe.

 

Stories from the Edge of Blindness is Spreading its Wings

I have been making some changes to the blog lately, as well as trying to give it more of a presence outside of WordPress.  In case you hadn’t noticed, the look of the blog has changed; I had been using the same theme I began with in 2010 and it was time for an update.

“Stories from the Edge of Blindness” can now also be found on Facebook.

On Twitter, I am @floweringink

And, if you just want to see some pictures of the cutest pugs on the planet, you can find them on Instagram.

Spread the love!  Follow, like and share me (does that sound dirty?)!!!

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