Jean 1 Name: Jean Walsh

Age: 59

Where do you call home? Northern Massachusetts

Education (degree(s): I have two master's degrees: one in community social psychology and the other in social work.

Who do you live with? I live with my husband of, gulp, almost 27 years and our two dogs. One is my sweet service dog Wendy and the other is our kind of obnoxious pet, Sadie.

What's a typical day for you? I am not working right now. I am trying to stay focused on being as healthy as I can. So a lot of the day is working out and trying to eat clean. But I also do FARA Ambassador things and am a member of my city’s Commission on Disability Issues trying to make my city accessible.

How long have you known you are living with FA? I was diagnosed in 1981 when I was 19. This was pre-genetic test so it was confirmed by a genetic test in 1998. So, I’ve known I was living with FA for 40 years.

Are there any others with FA in your family? One of my two sisters has FA, but we have no known family history.

Describe your transition from walking to walker/wheelchair. I walked as long as I could, much to my mother’s chagrin. I think walking helped me stay strong. When I was 33, I transitioned to using a rollator. This was a relief, because people were a lot nicer! Instead of thinking I was drunk, they knew something was up. I transitioned to a manual wheelchair when I was 44…no more constant worry about falling. I transitioned to a power wheelchair about four years ago and now I go more places and do more with less fatigue. For me, each transition has been deeply considered and while I mourned what I could no longer do, I always found the equipment gave me more independence.

What do you like to do to stay active and what type of exercises work for you to stay strong? I like weight/strength training. My gym has a seated elliptical machine for which they can remove the seat so I can use it from my wheelchair. I also do adaptive yoga and ride my trike.

Do you have any hobbies or special interests? I am kind of obsessed with gardening, but I also love reading, podcast listening and movies. Covid has cramped this, but I love to travel too.

When FA gets you down, what do you think/do to feel better? I try to find something to laugh at. right now the podcast Smartless is working for that. Also, as per my obsession, being in my garden.

What is one way living with FA has POSITIVELY affected your life?I have met so many amazing people!!!

Jean 2 What is a favorite motivational quote of yours? This is part of a poem, so not a quote. Apologies for the length, but I love it. Naomi Shihab Nye excerpt from her poem “Kindness,” Before you know kindness as the deepest thing inside, you must know sorrow as the other deepest thing. You must wake up with sorrow. You must speak to it till your voice catches the thread of all sorrows and you see the size of the cloth. Then it is only kindness that makes sense anymore, only kindness that ties your shoes and sends you out into the day to mail letters and purchase bread, only kindness that raises its head from the crowd of the world to say It is I you have been looking for, and then goes with you everywhere like a shadow or a friend.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Happiness is an inside job. You can be unhappy with or without FA. So find your happy and don’t be afraid to let others help you.

What is piece of advice that someone with FA has given you that encourages and inspires you? I can’t remember who said it but…only compare you to you…it is universal advice really. A reminder to focus on doing the best you can with what you have and, you probably don’t know what resources others are working with.

What is the first thing you want to do when a cure/treatment to FA is found? Dance until I drop!

"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 guess, I try and live by my answer to 17. BUT that doesn’t mean I don’t have my share of sorrow. But per the Naomi Shihab Nye excerpt, that sorrow can help me know kindness to myself and others.

Interviewed by
Interviewed by Xhesika Peza