Name: Jamie Cusick
Age: 46
Where do you call Home? Southern Maryland
Who do you live with? My parents
What are some of your interests or hobbies? I love listening to books. I love music, especially mixing my favorites and making MP3 discs. I love summer, floating in the pool, and listening to music.
What is your education? I have an Associate’s Degree in Criminal Justice.
When were you first diagnosed with FA? I started having symptoms at age 7 but was officially diagnosed through DNA testing in 1998 at age 19.
What are some life hacks that you use daily to make life easier living with FA? I have an audio book reader from the Maryland State Library for the Blind and Physically Handicapped. It is a special reader because you can download the books from the Library onto a thumb drive. The reader “reads” the books to you and you are able to change the volume, the speed at which it reads and the tone. You can also rewind a few minutes at a time if needed. This reader has saved my life.
What has living with FA taught you? That other people take their healthy bodies for granted.
When FA gets you down, what makes you feel better? Books and music.
What are some things that you are struggling with now that you haven’t in the past? Communication. I have a hearing deficit and cannot always understand what is being said to me….I cannot communicate with a noisy background. It is also very frustrating when most people can’t understand what I am saying to them.
What is one way living with FA has positively changed your life? I have been told that I am an inspiration to others, but to me, that hasn’t helped me.
I have FA, but FA, doesn’t have me, What does that statement mean to you? That means to me that you should continue to do all the things that other people do. I personally have “used” my FA to challenge situations that are unfair for wheelchair users and to educate others about FA.
What is a favorite inspirational Quote you remember? “An unexamined life is a life not worth living”…. Socrates
Interview by
Michael Gambino