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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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Cataracts

Telephone Phobic, Demoralised and Smudged Out by Middle Age

I have to start this with a bit of a warning; it is possible I am getting a tad obsessed with ageing; aka, I may be in the throes of a mid life crisis.

For the minute, let’s just say I am in a bit of a contemplative space, steadfastly refusing to accept that I am no longer thirty five while complaining to my husband about my aching hip and arthritic knees. I am also about to have cataract surgery, which despite my knowing it is because of RP, still seems like an old person thing. But, I am thirty five (right?), so what the fuck? Fine, I am not thirty five. It feels like an affront that I am now officially middle aged, no longer desirable, and probably losing my memory earlier than I should because I spent so many years in and out of drunken stupors. But, I can’t deny that I also feel happy. How can one person possibly deal with such an opposition of emotions at once? I wish I could say I do so gracefully and with an open mind, but the truth is that I am not sure I really deal with the emotions at all. I hide under a rock, live inside a shell of inappropriate delusions, pretend I am not afflicted with a myriad of health issues, and sometimes, as the cherry on top of the denial cake, get completely smashed. It leaves me with one very burning question; why the hell doesn’t anyone tell you how fucked up getting older is and how it leaps on you overnight and out of nowhere? I would reject this whole ageing thing if I could, but time is stubborn and cruel and clearly in charge. I am merely a demoralised and somewhat sad woman who is being systematically smudged out.

I have learned however, in my years of acquiring wisdom in some pretty crazy ways, that there is always a flip side. Did I mention that I also feel happy? I do. I am living in a place I have dreamed of living for most of my life, I have an amazing husband and a wonderful family and I am alive. I am lucky; for all of my complaining, I do know that I am incredibly lucky. I am also angry sometimes and sad and confused and frustrated and joyful and playful and lacklustre and droopy and, well, you get it; it’s that human condition thing. At the moment, I feel disbelief about the avalanche of middle age, terrified about and grateful for the impending cataract surgeries, and insanely fortunate to be able to walk down my street and see the beautiful landscape around me. I am also feeling sad because it is getting increasingly harder to read, but hopeful that the surgeries will remedy that somewhat….a post for another time.

Hope

Ever since my RP diagnosis, I have shied away from hope. Not a coquettish kind of shy, but a hand in the face, get the hell away from me kind of shy. I didn’t see the point of getting into bed with hope; I was all about getting on with the business of being blind, dealing with what was real and imminent. I saw hope as a tease, a liar, a villain. I refused to be prey to its allure. Until now.

Hope is still a mind fuck, but for the first time, I really want to be fucked. I want to be taken by hope, my thoughts flooded in it, my skin saturated by it. I want to fall into the surrender of hope, run barefoot, fly, forget.

When RP came into my life 19 years ago, cataracts came with it; in those 19 years, I have seen lots of eye doctors who told me that the cataracts couldn’t be taken out.; they were too small, not ripe enough, needed to be watched. I figured they were here to stay, just like RP, and I didn’t let the sexy face of hope tell me different. Then I moved to Ireland.

A couple of months ago, I saw an ophthalmologist in our town who had something different to say about my cataracts. She asked why they hadn’t been removed and told me that she didn’t see any reason why they couldn’t be removed. She said they must be driving me crazy, and gave me the name of a cataract specialist.

The cataracts are right in the centre of my visual field. Everything I see is blurry because of cataracts. They increase my light sensitivity so much, some days I am in tears from the pain. They give me double vision and fuck up my focus so I can’t read regular books. They have stolen colour and texture from the world and I am not ok with them anymore. I want them out.

I want to see all of the vibrant shades of green that cover this country I now call home. I want to turn the pages of a real book, discover what’s inside. I want to go outside without a hat, open the blinds and the windows on a sunny day and not be in pain.

Next week, I see the cataract specialist, who will decide the fate of the quality of my remaining vision. I know he may say what all the retinal specialists before him said, but this time I am bringing hope along for the ride.

I Don’t Do Sick Well

I am sick.  Nothing serious, just a cold that won’t seem to go away, but I don’t do sick well.  No one likes being sick, I get that, but when I get a cold, I act like the world is crumbling.  I wasn’t always like this.  I used to get sick and ride it out and never talk about it.  Now, I am not only talking about it, but writing a blog post about it.  I must sound pretty crazy, or like a total princess.  Either way, it’s not cool.  I need to figure out where my tenacity and grit escaped to.  Thanks to my Dad, I think I have an idea.

I was visiting my Dad 4  days ago, the day the beast cold started attacking my throat, and I mentioned that I felt like I have become super sensitive to just a simple cold, making a huge deal about a sniffle or two.  He told me that he thinks I may feel like any physical ailment is just one more fucking thing on top of the big thing, the blind thing.  And, yes, he did say the F word; I come from a family who use expletives freely.
Continue reading “I Don’t Do Sick Well”

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.

 

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