The Blind Zumba Lady: A Retinitis Pigmentosa Story

Who knew one could go blind slowly? 

I've had eye problems for as long as I can possibly remember, but it wasn't until May 2010 that I found out I was living with a degenerative condition called Retinitis Pigmentosa, basically a swelling of the retina that allows pigment to seep in and kill off the rods and cones.

My friends and family teased me about my eyesight for the longest time. I knew I was seeing differently but I didn't know how to explain it. My optometrist never mentioned any abnormalities. I finally decided to see a new doctor. The only way I could explain it was like this -  If I dropped something on the floor, I had to step back and look at the floor as a whole to find it, so my new doctor ran some tests.

Image courtesy of phanlop88 at
When I went back in for the results he pulled out a text book. Now, let me tell you it is not fun being compared to text and seeing first hand what the problem was. The image of my retina showed a smattering of black spots. These spots were killing off my rods and cones, affecting my peripheral vision, night vision, light sensitivity and a host of other things.

Being that it was a slow progressing condition (I don't like the word disease), I thought I had all the time in the world to continue on with my life the way it was. January of 2012 I finally contacted my specialists office to ask specifically what my peripheral vision was at. Come to find out, at the time I only had 10 degrees left, and that was based off the initial testing in 2010. Needless to say my life changed drastically from that point on. I stopped driving immediately, and became completely dependent on other people. It was a major life change.

It's been nearly 4 years, and I have learned how to live with and make the most of it. I am a military spouse, and our new base has allowed me the opportunity to have much more independence. We bought a house in a small town right off of the "downtown" loop, a half mile road that has everything I could possibly need. I'm within walking distance of a grocery store, post office, library, gym as well as the dance studio I teach Zumba at.

Last summer I read an article about how high levels of cardio could potentially slow the progression. So the moment we bought this house I signed up! I was feeling the health benefits for more than just my eyes, so I decided to get certified and teach Zumba myself. About 8-10 weeks into my cardio program I started to get spots of light in my peripheral that I haven't had in who knows how long. 

Now, it's most definitely not a permanent fix, or getting better. In fact my peripheral has actually deteriorated even more. Last years appointment showing I had 0 degrees left. But it gave me hope. 

There are so many treatments in trial testing right now that I'm confident there will be a treatment before I lose my sight completely.

I've taken this as an opportunity to learn and advocate for those who are visually impaired. 

I've walked multiple times in the VisionWalk for the Foundation Fighting Blindness who fund research for degenerative conditions like mine. 

Photo from Foundation Fighting Blindness 

I'm the first one to crack a joke at my expense to ease others uncertainties, and I'm happy to answer any questions people have about my condition.

I currently use a white cane to get around. It helps keep me from tripping and falling, and it lets others know that my eyesight is limited.

 I can't tell you how many times people thought I was rude because I didn't know they were near or shook hands.

 Most people don't understand why I can look them in the eye but be legally blind.

The central vision I have left is decent. 20/50 in both eyes with contacts, but things become harder to see in low lighting.

My view on an airplane...

Similar colors have a tendency to blend together, and the brain likes to make you think you can see more than you can by filling in the gaps where there's large amounts of color. 

You can see how this would be dangerous while driving.

I'm happy to report though that I was recently approved for a guide dog. I'm looking at late spring, but I'm sure the time will just fly by! I'm happy and I'm thankful for the vision I do have left to enjoy with my family.

Today's guest poster is Sarah... The Blind Zumba Lady. She has been dealing with her vision loss with such grace I am grateful she has shared her story with us. You can connect with her @Sarah_VIPwithRP via Twitter. 

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