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Own the Equinox 2017 | Look Left

September 5, 2017

by Sarah Turner

I used to think I was just clumsy. Bumping into things, tripping over things - can't walk and chew gum at the same time, I would joke. Who knew there was a reason. I'm still just a few years out from my Usher syndrome diagnosis, and I still sometimes have a hard time believing that it's true, that it's my life.

I'm grateful to have had so many decades of my life completely unaware of Usher syndrome. But now that I know that I have it, I think often about how Usher syndrome isn't something that everyone knows about. Most people have never heard of Usher syndrome, and beyond that, they likely don't know that it's the leading genetic cause of deafblindness...maybe they don't even know that "deafblindness" is a thing. I didn't. Not really.

I think of the things I know now that I didn't know just a few short years ago, and things that I am aware of now that I might have brushed off years ago. I have nightlights in almost every room of my home. I carry a flashlight in my purse. When I get back to my office after a walk outside during lunch, I never take the stairs because the lighting is too dim and you can only trip up the stairs so many times before it gets old. And I didn't realize that my peripheral vision was beginning to decline... but then again, how would you know what you're not seeing? You're not seeing it.

While I'm still lucky to have a decent field of vision in well lit situations, I know that my peripheral vision on my left is... less great than my right. That is what inspired my awareness project for the Own the Equinox campaign.

While the average person without Usher syndrome has about 180 degrees of vision... I do not. So for every day of the campaign, I've taken a picture of something directly in front of me, then pivoting the camera (usually my phone, because it's always with me) directly to the left to take a picture of what is in my periphery. Then I fuse the two pictures together. These Look Left photos aren't precise - they don't fully identify what I can and cannot see - but it's representative of what may be out of my sight because of this disease.

This thing that I had never heard of just a few short years ago has become something that I think about every day, at least once a day. While I try to remain hopeful about the research and about the possibility of treatments and cures, I also try to keep myself grounded in the here and now, and try to keep myself from dwelling too much on what I thought would be and what may actually be. I am grateful for my independence, and I am grateful that the progression of retinitis pigmentosa is slow. I am grateful that through the Usher Syndrome Coalition I have been able to connect with people just like myself, people who have become friends. I think if I had to face this news without the advantage of connection, it would be so much harder than it already is. I have found ways to challenge myself over the past few years to prove to myself that I can do hard things (I'll be running my second half marathon in October). I have tried to keep myself from repeatedly drowning in the muck of my feelings about it - though some days I'm more successful than others.

I have no idea what the next year will bring. Or the next five for that matter. But I'm trying the best I can to make an impact. I'm trying the best I can to not get overwhelmed with what I don't understand. I'm trying my best to raise awareness, make a difference, and to even remain hopeful. That's really all I can do.

This year's Own the Equinox campaign has been a big struggle for me - not because I don't want to shout from the roof tops about Usher syndrome and ask people to please listen, to learn, to help me spread awareness. It's been tough because there's a fundraising component to it. Raising funds to keep these vital programs running is essential - some of these programs have been a huge benefit to me.

Of course, I want people to donate.

I also know that there's a lot going on in the world right now. If you're like me, you're watching the news and feeling like you can't possibly help all the causes that need financial support right now, such as organizations doing a lot of heavy lifting to get people safe and cared for in Texas. If you are feeling the fatigue in the wallet: I get it. What I'll say is this: If you are compelled to donate, and you can, I would appreciate that so much. Please visit my link and support this great organization. If you are compelled, but just cannot right now - please bookmark this page. When the time is right, I hope you'll visit and support the Coalition - every dollar counts. Truly.

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