Search

Stories From the Edge of Blindness

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

Category

Fear

How Do I Get Out Of Here

I didn’t start this month thinking I would be writing about mental illness, but I have been so encouraged by the bravery of other writers sharing their experiences, I feel the need to share my own, with the hope that it may help someone, somehow.  My experiences are not unique, but that is the point; there are so many of us out there who suffer from depression and anxiety, and we should not feel ashamed.
Continue reading “How Do I Get Out Of Here”

By Your Side

I have been in a bleak place lately.  It is a familiar place, a place of introspection where I can try to figure out what is bringing on the sadness.  I thought it was because of the shit storm of rejections I have been getting, but they were just the cap on feelings that were already dragging me under.  I have been feeling overwhelmed for so long.

After coming to the conclusion that it isn’t the rejections that are pulling me into the clutches of sorrow, I had to stop and breathe and look behind my eyes to see what has been troubling me.  This can, at times, be a herculean task, as I seem to be troubled far too often, and it is never just one thing. But, I have become good at peeling away the layers, seeing what lurks beneath.
Continue reading “By Your Side”

Adding My Voice to the Mix

I have been wanting to, and feeling afraid to, write this post.  I wasn’t going to write it today; I was going to write about being sick and how I have been sick the past few days and how I just don’t do sick very well, but then I read something this morning and I think it is time for me to write the post I have been so afraid to write.

Since the school shooting in Florida, I have read a number of posts, some about the shooting specifically, some about guns, some about the fear that comes out of living in a gun culture, some about the violence and atrocities around the world that we know so little about or turn away from because it hurts too much.  They have all had a huge impact on me, in different ways and from different directions.  Please read them.  I think they are vital and important.  I think what they tell us and teach us is crucial.  “Guns” from Tom Being Tom, “The Marriage of Heaven and Hell” and “The Good, the Bad and the Ugly” from Bojana’s Coffee and Confessions to Go, “An Unburdened Childhood” from A Light Circle, “Scariest Thing that has ever Happened….Terror at the Movies from Visions and Giggles, and the post I read this morning, “We are so Clueless” from Brandewijn Words.
Continue reading “Adding My Voice to the Mix”

Fraud

I am a lazy blogger.  It probably isn’t a secret.  Most of my posts are unpolished and clearly just an unwinding of something within me.  Lately, they aren’t even new, just links to things I have already written that are appearing elsewhere.  In truth, I haven’t been writing a lot the past few weeks; I write every day, but some days the words are few and feel miles from anything remotely palatable.

Most often, here and outside of the blog, I write without direction.  I don’t do research or develop plot lines.  I put in the time and the work, but I let the words themselves guide me. I revisit them and change them, smash them and polish them, especially with my poetry, but I don’t approach them with forethought.  I suppose the unwinding is simply my writing process, but this saturates me with self-doubt; I always return to the idea that I must be doing it wrong, that I don’t have the tools to do it right.  I am terrified that I will finally discover what I have feared all along, that I am a fraud.
Continue reading “Fraud”

Sidlak Poetry

Sidlak poetry (sid/lak) is a structured poetry consisting of 5 lines with 3-5-7-9syllables AND A COLOR. The last line must be a COLOR that describes the whole poem or the feelings of the writer.

I just learned about Sidlak poetry from the love blogger, https://mukhamani.wordpress.com and I thought I would give it a go.  I am not sure if I am totally following the form, but this is my attempt:

She sinks down

Under the deluge

Safe in the branches of earth

The black threads of noise falling silent

I love exercises like this! Anyone who wants to, please give it a try, and post it in the comments section!!!

 

Isn’t that Something Only Old People Get?

RP is anything but straightforward; it comes with lots of extras that you wouldn’t expect. A year after my diagnosis, I thought I had become pretty versed in the language of RP and what I might possibly be faced with as the disease progressed.  Night blindness had become a part of my fabric, light sensitivity was something I was constantly dealing with and I was learning how to become a vigilant scanner while walking down the street.  But, I had only skimmed the water.  And, at that time, I still had about 50 degrees of vision.  This diagram may help with the whole degrees of vision thing.

IMG_0445

As I understand it, normally sighted people have about 85 to 110 degrees of vision, well into the far peripheral.  At the time of my diagnosis in 2002, I had about 50 degrees.  Now, I have between 15 and 20 degrees, and in the RP world, that is actually pretty good. I think this diagram also shows how much of what we see is considered peripheral vision. This was a bit tangential, but I hope it gives some clarity.

So, back to 2003.  I was due for my annual visit to the retinal specialist; Dr. Heckenlively had left UCLA to work in Michigan and his patients had been split between 2 other Retina guys.  It would be my first time meeting Dr. Sarraf, and despite the fact that he would inform me of an RP extra I hadn’t expected, I loved him.  Dr. Sarraf is an incredibly kind and gentle doctor, who gets genuinely excited to give good news and is insanely smart; he is one of those serious research guys and I am lucky to be in his care.

The day I met him, he walked into the darkened room, shook my hand, chatted to me for a while and proceeded to examine my eyes.  I can’t lie, I don’t look forward to this eye exam; it hurts, a lot.  My light sensitivity is extreme on a regular day, even with sunglasses, so imagine how much a bright light aimed directly at my dilated pupils feels; it’s like someone is poking my eyes with hot needles.  Not fun.  Anyway, I digress.

Dr. Sarraf does the exam, sits back down in his chair and, in his soft and comforting way, tells me that I have cataracts in both eyes.  What the Fuck?  Cataracts?  Isn’t that something only old people get?  Apparently not.

Here is a simple explanation of cataracts: A clouding or loss of transparency of the lens in the eye as a result of tissue breakdown and protein clumping. Cataracts affect most people who live into an old age. Symptoms include double or blurred vision and sensitivity to light and glare.

Cataracts are commonly seen in RP patients, but doctors and researchers don’t seem to know why.  When Dr. Sarraf told me I had cataracts, I felt devastated, which was difficult for some people in my life to understand.  I remember my step mom telling me that it wasn’t a big deal because cataracts can eventually be treated, but for me, it was a huge deal.  Of course I knew that cataracts could be removed, but I was 34 years old and I sure as hell hadn’t met any other 34 year olds who had fucking cataracts. It was one more thing piled on top of everything else that RP had brought into my life; it was one more thing that made me feel defective, broken and different.

Almost 16 years later, the cataracts are still there, slowly ripening, but I don’t give them much thought. They are just another thing that comes with having RP, an added challenge to an already challenging disease. I don’t love that I have them, but I have accepted the cataracts as part of my RP journey.

 

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.

 

 

 

 

 

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.

Create a free website or blog at WordPress.com.

Up ↑