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Mary Bircher

Mary BircherName: Mary Bircher

Age: 31

Where do you call home? Durham, North Carolina

Education (degree(s): I have a BA in English from the University of North Carolina at Greensboro and an MA in Victorian literature from the University of London.

Who do you live with? I live with my boyfriend who I've been dating since high school! We also have a corgi named Finn.

What's a typical day for you? Well I am a pretty boring person! I sleep late and then I find whatever needs to be done around the house. I'll play some video games, and I really like to read. I do exercises and twice a week I have PT. My boyfriend's job allows him to be home most of the time so that's really helpful.

How long have you known you are living with FA? I was diagnosed when I was 9. It was a pretty straightforward thing. A teacher noticed a few things were off about me, and I was diagnosed pretty quickly.

Mary BircherAre there any others with FA in your family? Nope! My dad thinks his grandmother may have had it because she was in a wheelchair and died young, but of course we'll never know.

Describe your transition from walking to walker/wheelchair. I walked until college. By the end of high school, I was holding onto people and I barely walked independently but I kind of refused to do anything about it out of vanity. I never spoke about having FA, so I just pretended there wasn't a problem. Looking back on it, it seems pretty stupid but once I got to college I really had no choice, I would never have been able to walk around a campus. I got a scooter that year, and it was the best thing that ever happened to me.

What do you like to do to stay active and what type of exercises work for you to stay strong? I have an amazing physical therapist who has actually become one of my closest friends. She challenges me a lot and is full of ideas, but also lets me come up with some crazy things of my own. We do just about everything, even a little bit of walking. I do puzzles and Legos for dexterity, handcycling, and recently I got my own stander. Oh, and stretching. Lots of stretching.

Do you have any hobbies or special interests? Reading and horror movies. I like to build Lego sets but I am out of room right now!

When FA gets you down, what do you think/do to feel better? I'm sure this isn't a healthy coping mechanism but... I'm southern and... they call it comfort food for a reason! :-) But really! I usually turn on a sitcom or something that will make me laugh without having to think much. That usually does the trick!

Mary BircherWhat is one way living with FA has POSITIVELY affected your life? I know everybody says this, but it's the friendships that are the best. One of my best friends in the whole world has FA and I would never have met her otherwise. We have lived close enough to scoot to each other's houses and it's crazy to think we may never have met without FA.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? I always recommend that people don't focus on FA. It's easier said than done, but I think the decisions you make have to come from who you are, not just your physical condition.  Some things might be challenging, but you don't have to give things up. (Unless you're weird like me and wanted to be a neurosurgeon! Probably should stay away from that one).

What is the first thing you want to do when a cure/treatment to FA is found? Walk my dog independently.

"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? FA isn't my dominant feature. I like to think I'm more defined by my personal interests than my genes, but it's hard when the rest of the world just sees you as a talking wheelchair.

Tell us a little more about you... I have a huge collection of Cheshire cats. I'm a little obsessed with corgis and Stephen King. I like tattoos and I go to Disney World every 2 years (I also used to work there!).


 

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