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Shelby Wright

Sandra Johnson Name: Shelby Wright

Age: 25

Where do you call home? Southern Missouri

Education/Career: I have a BS in Political Science from Missouri Southern State University (graduated in 2019) and I start law school at University of Missouri in August (2021).



Who do you live with? I am single without kids. I live at home with my parents currently, but I am about to move to Columbia, Missouri for law school. I am close to both my sisters, but they are older and have houses of their own.

What is a typical day for you? The last year has been somewhat unscheduled since I haven’t been in school. But I have spent time writing as a journalist for an online publication and worked on a campaign making phone calls to possible voters.

 

 

How long have you known you are living with FA? I was diagnosed at 12 so, over half my life I have lived with FA. At 12-years-old, my parents noticed I was showing symptoms of something (mostly imbalance and general lack of coordination). It was relatively simple; my first visit with a neurologist, I was diagnosed.

Sandra Johnson Are there any others with FA in your family? No

Describe your transition from walking to walker/wheelchair. I didn’t get a custom wheelchair and use it all the time until I started college in 2015. Before that, as it got more difficult to walk longer distances, I simply wouldn’t go to the event/activity or was attached to a family member’s arm. Looking back, I was just hard-headed and should have adopted a walker and/or wheelchair sooner.

What do you like to do to stay active and what type of exercises work for you to stay strong? I go to physical therapy twice a week and try to work out one other time during the week by myself. Then, I enjoy riding my ATV (I imagine it gives me some physical training). To get my heart-rate up quickly (to begin my workouts) I throw a weighted ball or do an arm bike. Strength training is something I enjoy. Lifting weights or pulling weight on a machine is a good option for those of us with coordination and proprioception problems. Lat pulldowns with resistance bands give a great back workout. Back workouts with scoliosis might hurt, but scoliosis without a strong back is worse. I adapt it because I don’t have enough control of my legs, but the rowing machine is a fairly good full body workout. It works your lower back and makes you focus on posture.

Do you have any hobbies or special interests? I like to read, follow politics, write, ride ATVs, and hangout with friends/family around the bonfire.

What is a good trick to make daily life easier? Life is not meant to be easy, but you might gain a special perspective from your hardships. Artists who make beautiful things, entrepreneurs who make technological progress, and those who are motivated to achieve in all sorts of ways are many times inspired in uncomfortable, less-than-normal backgrounds or environments. A good thing to remember to keep your pains in proper perspective is what Mark Twain said, “The world owes you nothing. It was here first.”

When FA gets you down, what do you think/do to feel better? I’m not sure if it’s ever only FA that gets me down. Sometimes, personal relationships, concerns about my future career, or politics plays a role in getting me down. Whatever the main reason for a bad mood, I like to read, listen to music, and write. Note: my Spotify playlists are legendary.

What is one way living with FA has POSITIVELY affected your life? FA has given me opportunities and perspectives that I wouldn’t have otherwise. I think people find me easy to talk to and I’ll take the time to listen because everyone has their own burdens to bear. I’ve seen the world and experienced it in differing states and different levels (walking v. wheelchair). I’m Southern, Mid-western, but I love the East-Coast and the only reason I ever came to that region was my FA doctor.

Sandra Johnson What is a favorite motivational quote of yours “My dear fellow, who will let you? That’s not the point. The point is, who will stop me?” -The Fountainhead, Ayn Rand

What is the best advice YOU could give a person who has been newly diagnosed with FA? You won’t always like it, there will be many times when you say, “it [life] shouldn’t be this hard.” But life is not supposed to be easy and if anyone ever told you that it would be, they were lying. So, go on with what you want to achieve in the world and if an accessible ramp is not there…build it.

What's the first thing you want to do when a treatment/cure is found? Ride a dirt bike, again. I gave it up when I was diagnosed and miss it a lot.

"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I live life even if it isn’t perfect. I think everyone does; there’s no other option.



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