Name: Katherine O’Connor
Age: 30
Where do you call home? I live in an apartment near Boston
Education (degree(s): I have a bachelor’s degree in engineering from MIT
Who do you live with? My boyfriend of 5 years
What’s a typical day for you? I work in software, so I work from home most days, but occasionally get a ride into the office. Either way, I try to spend at least an hour a day moving my body in some way.
How long have you known you are living with FA? When and how were you diagnosed? I was diagnosed in high school – I thought I was just a clumsy nerd, but I failed the presidential physical fitness test so bad that they realized I should get checked out.
Are there any others with FA in your family? Nope, just me
Describe your transition from walking to walker/wheelchair. I was doing pretty okay (not actually okay, I fell all the time) before the 2020 lockdowns. Then I didn’t leave my house for several months, and when I next tried, I realized I couldn’t really walk without support.
Do you have any hobbies or special interests? Reading/writing fiction, mostly scifi and fantasy
When FA gets you down, what do you think/do to feel better? I’ve realized that being in a negative headspace makes all my symptoms noticeably worse, so I have a “happiness” playlist and a collection of videos that make me laugh, to break me out of negative thought spirals.
What is one way living with FA has POSITIVELY affected your life? When I look back at my life before I was diagnosed, I realize that I spent a lot of time looking for excuses not to work too hard or try anything too difficult. Now that I have an excuse, I’ve realized I don’t want it, I actually want to work hard and accomplish things.
What is a favorite motivational quote of yours? “Dying is easy, living is harder.”
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Don’t put your life on hold until they find a cure. Learn to live the best you can in the reality we have now.
What is the first thing you want to do when a cure/treatment to FA is found? I will dance and never stop dancing.
Interview by
Erin O’Neil