Name: Mekayla Holm
Age: 26
Where do you call home? Cottage Grove, MN
What is your education [degree(s)]? What is a current goal you have with your education? How will FA add to your future [career]? I have a Bachelor of Science degree in Data Science! No concrete plans as of yet, but would love to get my Master’s someday. FA has led me to be an advocate for the disability community in the workforce.
Who do you live with? I live in my own accessible apartment! Couldn’t do it without the help of my family and friends.
What’s a typical day for you? I work full-time from home as a Global Business Analyst! After work I like to workout, read, or binge the latest tv series.
How long have you known you are living with FA? When and how were you diagnosed? I was diagnosed 9 years ago at the age of 17. It started with a simple physical where scoliosis was discovered, and FA was confirmed by a genetic test in the months following.
Are there any others with FA in your family? Yes I have an older brother with FA, forever wishing he didn’t have it too!
Describe your transition from walking to walker/wheelchair. I was extremely stubborn for the transition from walking to using a wheelchair. I wanted to fight it, but ultimately it is much safer and has allowed me to be independent!
What do you like to do to stay active and what type of exercises work for you to stay strong? I love riding my trike with my brother, and also go to physical therapy once a week! I do a lot of core exercises like sitting on a bosu ball, and I do standing exercises as well.
Do you have any hobbies or special interests? I love practicing makeup and watching sports! Not your typical combination but my makeup collection and love for sports will tell you everything you need to know!
What is a good trick to make daily life easier? A good trick is investing in some long grabbers. I use them to get my laundry out of the back of the washer all the time!
When FA gets you down, what do you think/do to feel better? When FA gets me down I like to surround myself with friends. If they’re not available, there’s always dark chocolate 🙂
What is one way living with FA has POSITIVELY affected your life? I have met some of the most resilient people that I look up to every day!
What is a favorite motivational quote of yours? “She believed she could, so she did.”
What is a piece of advice that someone with FA has given you that encourages and inspires you? Someone once told me that I should celebrate all the little wins throughout the day because life with FA is pretty hard compared to the average person. I do that all the time and life is so much better because of it!
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Life does not stop after diagnosis. We quickly learn to adapt and achieve our goals, even if it may look a little different.
What is the first thing you want to do when a cure/treatment for FA is found? More than anything I want to dance again, so that will be first on my list.
“I have FA but FA doesn’t have me.” What does this statement mean to you? This statement means that I will continue living and thriving despite FA!
How do you live your life in the face of adversity? I definitely like to prove people (or FA or myself) wrong. So that gives me motivation to keep fighting when adversity strikes.
Tell us a little more about you. I love being with my friends! A night on the town is how I like to spend my weekends, and being outside as much as possible when it’s nice out!
Has FA had an influence on your course of study or work? If so, in what way? Definitely. I started out in Respiratory Therapy but was told I wouldn’t be employable after finishing 57% of my degree. I ended up in Data Science where the math department took me under their wing. It ended up being a good fit for a girl who’s a bit of a nerd when it comes to math & statistics.
Are there any modifications that have made it easier for you to pursue your education or work in your job? Working from home has been the biggest blessing. Not having to commute has saved me so much energy!
What is your favorite part of your education or work/career? My favorite part of my career is getting to exercise my brain in analytics.
How long have you had your hobby/special interest? How did it start? Why is it important to you? My interest in makeup started from competitive dancing when I was 6. It was just stage makeup back then, but it evolved into watching YouTube video after YouTube video until I did my best to perfect it. We can’t control how FA manifests but I can control how good my makeup looks 🙂
What is your favorite movie or book? Ooo this is hard! I would say my favorite movie series are the Hunger Games.
If you could live anywhere in the world, where would it be and why? Tampa, FL. Hands down. Everyone knows I want to get out of Minnesota!
Are you a night owl or an early bird? I am a night owl — if it wasn’t for work I wouldn’t be up before 10 am 😉
Interviewed by
Seth Holm