Name: Shay
Age: 33
Where do you call home? Cobb County, Georgia
What is your education [degree(s)]? I have an associate degree in Drafting Technology and I’m considering going back for a Bachelor’s in BIMM (Building Information Modeling Management) this fall. Honestly, I would love to go back to school for a degree in Graphic Design, but those courses can’t be completed online, and I don’t drive, so I don’t have a way to get to & from the campus yet. A current goal I have is to be able to inspect buildings, enforce codes & become an ADA coordinator. I think FA helps me look at the world through an accessibility perspective. At the end of the day, I want to make the world more accessible, one building at a time.
Who do you live with? My parents, my youngest sister (14), my twin sons (15), my boyfriend (40), and my pets (3 dogs & 2 cats).
What’s a typical day for you? My daily routine is typically, I wake up, look at my phone for a minute, use the restroom (either by bed pan or my partner transferring me to the chair & then bathroom), taking meds, my partner makes me something to eat & does insulin injections, I might get dressed (I can do everything from the waist up by myself, but I need help with pants, socks & shoes) and go walk the dogs in my power chair while listening to music, or sometimes me & my partner go run errands. Sometimes, I ride my chair down the street and chill with my neighbor in her garage & occasionally I make digital art. I also meet up with my friend group to play Dungeons and Dragons a few times a month at my neighbor’s garage. I’m currently unemployed. Even with a degree, I’m finding it difficult to find remote employment opportunities because I have no prior job experience.
How long have you known you are living with FA? I was diagnosed in 2009 when I was 16. I went to doctors frequently throughout my early life and never got any answers, I just “had a funny gait” and really didn’t know what was going on with my own body. I just remember always having a hard time balancing/walking but trying my best to keep up with everyday life. In 2009, I was seen by a few different neurologists and finally had an answer.
Are there any others with FA in your family? No, I’m the only one, but my dad’s mother did have MS and used a wheelchair.
Describe your transition from walking to walker/wheelchair. I had my kids in 2011 via c-section, and it seems like that woke up the FA. I started struggling with mobility a lot in 2012, started using a walker in 2013. During 2016, I stopped being able to navigate stairs on my own & had a lot of falls. I’ve been using a chair full time since 2017. I live in a split-level house and haven’t been upstairs since 2018.
What do you like to do to stay active and what type of exercises work for you to stay strong? Sometimes, I use a resistance band on my legs or lift myself up repeatedly on the grab bars I have in my bathroom.
Do you have any hobbies or special interests? I really enjoy going antiquing and the creative process of planning tattoos. I also hang out with my dogs a lot. I don’t know what I’d do without them lol. I really like to nerd out and read about/listen to YouTube videos about mythology & cryptids.
What is a good trick to make daily life easier? Taking your time with things, like getting dressed or preparing food. Basically, energy management lol. I used to have a grabber stick.
When FA gets you down, what do you think/do to feel better? For one, I’ve realized that it’s okay to have a moment and cry sometimes. I used to suppress my feelings and not let out any sadness or frustration, but over time I’ve learned that it’s healthier to feel those emotions in the moment and do some deep breathing and release those feelings instead of bottling them. Also, having some time outside or listening to music, or even combining those helps me.
Another thing is you just must have a lot of patience with yourself and develop a great sense of humor with FA. You gotta roll with the punches & be able to laugh at yourself from time to time.
What is one way living with FA has POSITIVELY affected your life? I think FA has given me the opportunity to look at things through a few different lenses. I would say I’ve developed quite a bit of patience. I’m empathetic and I try to be as understanding as possible. Plus, FA has contributed to my interest in accessible infrastructure.
What is a favorite motivational quote of yours? “If there is no struggle, there is no progress” – Frederick Douglass
What is a piece of advice that someone with FA has given you that encourages and inspires you? I’ve actually never met anyone with FA, so I can’t really say.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? You don’t have to make yourself smaller to exist in this world. Don’t let anyone try to make you feel otherwise and do what you can while you can. One day you’ll appreciate the memories.
What is the first thing you want to do when a cure/treatment to FA is found? [Instead of thinking about a treatment,] I try to focus on living life as is and trying to have good times despite FA.
“I have FA but FA doesn’t have me.” What does this statement mean to you? I have FA, but FA doesn’t have me” means that although I have been diagnosed with FA, I refuse to let it define who I am or control my life. I acknowledge the illness, but I choose not to let fear, sadness, or the disease take over my identity, hope, or determination. I am more than my diagnosis, and I still have the strength to live with purpose, courage, and dignity.
How do you live your life in the face of adversity? I just try to live the best life I can & keep on pushing through even with life’s difficulties.
Tell us a little more about you…. I was born in Tucson, Arizona in November of 1992. I lived in Tucson until I was six. Both of my parents were in the military but decided not to re-enlist, so we moved to Georgia where my mom was originally from. Growing up, I didn’t have accommodations for my mobility challenges. In fact, it wasn’t until the last semester of my junior year in high school, that I was allowed to leave my very heavy textbooks in each classroom, and I was given an elevator key. Up until then, I had no accommodations and was struggling daily. I was constantly bullied and that made me really insecure about myself, so I tried my best to “hide” my mobility problems.
My little sisters were born in 2000 and 2011. Ironically, my youngest sister and I share a birthday (we are literally 19 years apart to the day). She was born when my twins were 10 months old, but she’s their aunt. When I was 16, I met my first boyfriend who would later become the biological dad of my kids. In 2010, I completed 11th grade, but never showed up for 12th. I was already pregnant & since my doctor said I was high risk, the school wanted me to use a wheelchair and have a student aide push me to & from each class. For fear of humiliation and bullying, I decided not to go back for 12th grade. So, I didn’t graduate high school, but in 2018 I completed the GED program. In the summer of 2019, I began courses at Chattahoochee Technical College with the help of some scholarships & grants. In the fall of 2023, I graduated from college with an Associate Degree in Drafting Technology. I met my current partner online in 2022 and he moved in with me in 2024.
Some other things about me: I love 80’s music. Depeche Mode is one of my favorite groups. My favorite color is green. I love spooky season, and Halloween is my favorite holiday. I like classic horror, indie movies, and some older anime (think Vampire Hunter D: Bloodlust). Some of my favorite shows are Community, Broad City, Insecure, Workaholics, and Yu Yu Hakusho. I’m an animal lover, and my favorite animals are sloths, raccoons, and bats. I really want to have a sloth interaction one day or go to Raccoon Island in Japan!
Interview by
Jamie Plourde
Edited by
Bree Lessard