No Hungy – Living With Usher Syndrome
In the past couple of months I’ve taken my WPR No Hungy Pledge to the next level and the reason why starts with the degenerative sight and hearing disease I have called Ushers Syndrome.
The catalyst for my complete change in mindset was a little contest by the name of ‘A Gentlemans Call’ that was hosted by Ketel One Vodka and GQ on Facebook. $100,000 would go to the person who came up with the best, most innovative idea for a business/philanthropic/invention/etc that anybody could submit. You submit your idea and try to rally your friends and family behind you to give you idea Likes and hope you get enough attention to make it into the top 5 in likes and be shown on the front page. I ended the first round in 4th in Likes, but never got the call to enter round two, apparently my idea to create a foundation for Ushers Syndrome wasn’t innovative enough. Regardless, I spent a whole two weeks from when I first entered to when the first round ended nearly sobbing every day. The support from my friends and family was overwhelming as I watched my idea climb from 10 Likes to the nearly 700 that earned me 4th in the rankings. After waiting for an email from Ketel One to pop into my inbox in the allotted time they listed in the Contest Rules (yeah, I read it thoroughly) and getting nothing, I felt that there was still something I had to do because the people who rallied behind me deserved better than that for all their efforts. My Ushers Syndrome Foundation may not have started (yet) but I still felt I could try to connect with other people who have this disease and try to inspire them the way everyone did to me with their support.
Before I unveil that step, let me tell you what it’s like having Ushers Syndrome to give you a honest perspective. There are 3 classifications, I have type 2, which is basically that I’m born with hearing loss and develop sight degeneration in my late teens until worse case I go completely blind. I may never reach that point, but two specialists have given me until I’m “About 50” until I’m legally blind, or 20 years. I’ll tell you, it’s a sobering and crushing thing to hear, especially when you’re apparently in the prime of your life. The hearing loss I’ve been dealing with since I was 2 year old, I wear hearing aids, and get by pretty well, I don’t have a slurred or slowed speech (thanks Ms. Adams my speech therapist all through elementary school!) sometimes I get a pronunciation of a word wrong, but that just happens. It’s the change in my vision that’s been the hardest thing to deal with in the last 5 years. Right now my depth perception is shot, my peripherals are coning to tunnel vision and I’m basically night/low light blind.
For starters, I don’t drive a vehicle anymore. It’s not a mandate by a doctor, but I was getting pretty bad panic attacks when all of a sudden a car/anything would come into my field of vision even though it’s been riding beside me the whole time. And there was the time I didn’t notice the flashing lights and bars coming down over a train track until I zoomed under them with inches to spare. It was around that incident that I told my wife I couldn’t drive anymore, excused myself and then cried in my bedroom for a little while by myself. Giving up driving has been really hard, my wife takes me to and picks me up from work every day, I can’t just hop in the car to take the kids somewhere by myself or go for some excursion. I can’t drive to a friends house by myself to have some buddy time, I get dropped off like it’s middle school all over again, or like in high school where people had to pick me up all the time.
I also get something called “Island” or “Doughnut” vision, which is basically I get holes in my central line of sight. I might drop something next to my feet, stare down at my foot area and a minute later of looking down I’ll see whatever it was sitting an inch from my foot. I run into my kids/non moving objects all the time, sometimes knocking them over, it’s frustrating, especially if it’s my kids as the sometimes get upset or cry, I just can’t see the little buggers if my vision decides to block out a section for no good reason. I have to be cautious with stairs, I can be staring at them as I walk up and still miss a step because my depth perception or where my brain thinks the stair is according to my sight is off. If I do this at home, usually clipping a stair and falling at the top because I’m not going slowly and cautiously, my kids find it hilarious so I play it off as if I did it on purpose.
The first time after I was diagnosed when I tried to tell myself that everything wasn’t going to be that bad and took up on a friends offer to play some Basketball with him and his friends was also the last time until recently I said that to myself. I wasn’t the greatest Basketball player growing up, I played on school and club teams until my Sophomore year of High School. I was good at fouling people, defense, and rebounding, in that exact order. I made sure my friend knew beforehand to tell everyone that I had this disease, he did, and he was good about it, good friends are like that. Though, it became very clear to me as the games progressed that as balls were passed my way and I never saw it even though I was looking at the passer, or that my shots were extremely off, or the other numerous blunders that I accrued during the game that just left guys looking at me not with a face of mockery or anger, but just a sadness as they glanced at me. That was when I internally decided that unless I was playing around with my kids, I was calling sports quits.
Back to my original intentions of this post, I’m tired of feeling that way, tired of feeling like I had to wall myself up from doing things that I love or trying new things because of the effects this disease has on my life. So, after Ketel One decided I wasn’t good enough for their contest, I decided I was good enough for myself and others who may have this disease or being losing their vision and hearing but need someone to show them you CAN live a full life. I remembered our site leader Xopher Reed telling me about the Tough Mudder event, 10.1 miles and 25 obstacle course designed by the British Special Forces. This seemed like a good starting point in my new No Hungy life. After talking to the people at Tough Mudder, WPR is going to be covering and participating in the Utah station of the event. I’ve gone back into the gym for the last two months and while I haven’t had any weight loss really, there are huge dramatic differences in my body. It’s amazing what happens when you start burning fat and adding on muscle (which is why there is not much weight loss) I’m starting to see actual definition in my abs, my face looks like someone else to me in the mirror and for the first time ever, I realized I can do the chest muscle flex thing, very poorly, but still!
So, even though I was terrified a little while running through a hiking trail, I found myself wanting to do it again, just so I can get that awesome little view like I did in the video below that I took with a GoPro HD Hero2 strapped to my head. A many thanks to the people at GoPro for giving it to us to use for this very purpose, inspiring Geeks and people who think they can’t do it, that they can. I’m not going to let this disease define me, I’m going to let my experiences define me. This is my No Hungy life, and I’m living it how I want to.
Eat Less, Move More, Live Life: No Hungy