TTR: Jonah, will you tell us something about yourself and your disability?
Jonah: My name is Jonah and I am 48 years old. I live in DeWitt, Michigan with my sweet wife Megan and my unbelievably wonderful baby girl Amelia. I have devoted my career to the Disability Community, mostly because I have always found people who face challenges to be more interesting. I have a disability called Charcot Marie Tooth and am currently serving as the National Youth Programs Manager for the CMTA. CMT is a neuromuscular condition that affects the extremities of my body. From my elbows to my fingers and from my knees to my toes. Due to nerve damage caused by CMT, I have muscle weakness in my hands and feet. I wear leg braces to help me with balance and stability. And I ask my wife and friends to button my shirts for me as well. 🙂
TTR: What would someone not know, or assume, about you with regard to living with a disability?
Jonah: This is a really good question. I think because of my outgoing personality and because I mostly accept my disability well, people might assume that I am not emotionally affected by it. But I am. Dealing with weakness every day takes a toll. I have a spirit that is strong and fast but my body does not consistently keep up with it. And that is a source of frustration for me.
TTR: The TTR staff misses you since your move across the country. One in particular wants to know: who is your favorite TTR Team member, whose name rhymes with “cat”?
Jonah: I had to think about this, but no question, it’s Pat!
TTR: We’re about to get real here. If you could change an incident from the past, would you not:
a. fart in front of your sister’s beautiful college roommate when you lifted
something heavy for her
b. have eaten that second fried Oreo in Vegas, that one (now infamous) time
c. have crashed the TTR Van
Jonah: I’M GOING WITH “C”
TTR: Last question. (We know you are hoping we don’t pull out another college reference.) What is the silver lining of living with a disability?
Jonah: I could write pages to answer this question. There are so many ways that my disability has brought good things to my life. I appreciate strength differently because I deal with weakness. I get the chance to see how caring and supportive people can be as a result of my disability. I get to know the amazing feeling of breaking through perceived barriers. I am physically and mentally tougher than I would be without this disability. I get the opportunity to teach others about what I have learned from this disability. I do appreciate the fact that this disability makes me unique. It’s funny to me how most people, myself included, spend the majority of their younger years trying to fit in and be like everyone else. And yet, as I have grown older and weaker, I have come to appreciate being different. I value the lessons I have learned from my difference. I teach others about those lessons and I am always quick to want to learn the lessons that others have to teach me from their differences. Most of the people I value in this world, especially the ambassadors at Tall Tales (and the staff for that matter), are completely unique. Weird and wonderful. That is a blessing. Normal, it turns out, is pretty boring. I always sum it up like this, If a genie came out of a bottle and gave me the chance to go back and take away my disability, I would say no. The lessons I have learned are too important. The gifts that I have received are too valuable. The benefits have outweighed the challenges a thousand times over. I wouldn’t trade my disability for the world.
