My story: What it feels like to go blind slowly

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“There must be something good about having tunnel vision”, a friend said to me one day, “It means you don’t have to see all the shit that’s around you.”

I was holding on to my friend’s elbow while we were walking down a side street and I asked her to elaborate. She said, “Well, you missed seeing the guy peeing on a tree about two meters from us and it was disgusting.”

But what my friend didn’t understand was that I would have loved to see that guy pee on that tree. The good the bad and even the ugly; I would like the chance to see everything again because going blind really sucks. I didn’t say this to my friend because I knew she meant well.

I have Retinis Pigmentosa (RP), which means that as I the retinas of my eye are deteriorating and I will eventually go blind.  I currently only have 8% of my vision left.

Everyone also living with RP may share similar challenges and each one may have their list of reasons why it sucks to go blind.

Here are mine:
1.    No longer doing what I love. It sucks that most of my enjoyment is around creativity that requires sight, such as painting, gardening and crafts.  

2.    Imagine looking at the world through a people hole.  When I stand directly in front of you, my 8% of vision allows me to only see your face, but your chin will be blurry and that is only for now.

3.    The uncertainty sucks. In a year or two, I may only be able to see your eyes. I don’t know how long the little I am able to see will last. I can’t enjoy a sun set, or my children’s faces without wondering how long I still will be able to see them.  

4.    Is there any point going to Egypt if I can’t see the pyramids? I no longer enjoy planning my bucket list for my retirement years or any other trips.

5.    I constantly bang against another surface and injure myself. It hurts and sends an adrenaline jolt through my body each time I bang my shins or split my head open.

6.    Being careful all the time is exhausting. It super sucks when people who love you tell you to ‘’be more careful.’’

7.    When people say ‘it’s over there.” It sucks when you ask your friends or family to help you locate something and they say, ‘’it’s over there.’’

They are probably pointing as they say it, but I don’t see that. So please, give me a bit more, like ‘’to the right of the kettle.’’

8.    At restaurants, people probably think I’m drunk. I can’t get through a meal without knocking over a drink or smacking someone on the face while regaling a story to them -I’m very expressive with my hands and I’m trying to change this.

9.    I am a hazard in public. I’ve pushed my shopping trolley into people, tripped over dogs, knocked over toddlers, and grabbed a stranger’s hand thinking it was my fiancé still standing next to me.

10.    I am terrified that one of my children has inherited RP and that there won’t be a cure in their lifetime.
Of course, much of this could be avoided if I used a cane. I sometimes do, but this has a whole new list of challenges.

I am terrified that I don’t have the wisdom, grace and positivity it would take to live happily as a blind person. Will I be reduced to depression, become bitter and unbearable?
I have found that talking about the challenges of RP is important. Not only to improve the understanding of friends, family and strangers but also to help advocate awareness and the continuation of research of finding a cure.

On a brighter note, this week I am joining two blind people for a mosaic workshop and will be blogging about how going blind doesn’t have to stop your creativity.  Watch this space for more.

YOU can make a difference by supporting the wonderful work that Retina South Africa is doing in raising awareness and doing research on finding a cure for retinal degenerative diseases which affect hundreds of thousands of South Africans and millions worldwide.

Check out more from Michele on her website or follow her on Twitter


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