Name: Katie SneadAge: 19
Where do you call home? Vancouver, Washington
Education: I have an AA degree and am currently in school to get my Bachelors Degree in Psychology.
Who do you live with? I live with my parents and my sister.
How long have you known you are living with FA? I was diagnosed with FA when I was 9. When I was about 7, my parents began to notice that I had trouble with my balance and keeping up with physical activities compared to other kids my age. I received testing for a brain tumor and numerous other genetic diseases before being diagnosed with FA after 2 years of testing.
Describe your transition from walking to walker/wheelchair: I started struggling a lot with walking in my freshman year of high school; when I was 14, a few months into the school year, I was having a very hard time walking independently. A teacher and great friend of mine, Tim Dibble, started letting me lean on him for support as I walked between classes; he saw my commitment to walking and did everything he could to support my wishes! I then had to go down to half days at school as I became too exhausted to get through a full day. I started doing half days every other day, all to keep walking. I was coming home after just a few hours at school and collapsing onto my couch. My relationship with walking had become incredibly toxic. I began using a wheelchair in my sophomore year, when I was 15 and I was able to attend school every day – rebuilding my mental and physical health.
What do you like to do to stay active and what type of exercises work for you to stay strong? I like to use a standing frame, push my manual wheelchair around my college campus, and transfer independently as much as possible. These three things combined together daily help me keep my body moving and help me to maintain my strength.When FA gets you down, what do you think/do to feel better? I honestly don’t have many “bad FA days.” I have days where I’m exhausted and emotional from the constant battle with my body in my day-to-day life. I just “get on with it” every day, I get up, care for myself, care for my dog, go to school, and treat myself with kindness every step of the way.
What is one way living with FA has POSITIVELY affected your life? In many ways, FA is the most positive thing in my life. I have traveled all over the country to participate in research studies, I’ve met amazing people, and I’ve gained such a unique perspective on life. I wouldn't have any of these things if I didn’t have FA, and I couldn't imagine that.
What is a favorite motivational quote of yours? Let life be what it is instead of what you think it should be.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Life will work out. You will always find a way to adapt to your circumstances. It’s okay to have to reevaluate things and live life differently than you expected to.
How do you live your life in the face of adversity? When you reach a point of accepting that you have FA, you will see life in the best way possible. The moment you realize that there is no one to blame for FA, it’s a random genetic sequence; you learn that things don’t need to be so incredibly heavy, you don’t need to harbor any anger, only acceptance and commitment to being grateful for all that you do have in this life!
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