Jake Thompson: Living with Friedreich’s Ataxia

My name is Jake Thompson. I was diagnosed with Friedreich’s Ataxia when I was 24 years old. Growing up, I loved to play sports. I played baseball, hockey, and football competitively but also enjoyed water sports, downhill skiing, tennis, and pretty much anything else with a ball and competition.

Towards the end of high school, I began having trouble performing athletically at a high level. My max lifts went down, my 40-yard dash got slower, and it was difficult for me to track fly balls in the outfield and make accurate throws. I had always been one of the strongest and fastest kids in my school; as a junior in high school, I even placed first in my weight class in a tri-school lift/run/jump competition.

As I started struggling to perform I also struggled in my identity. I didn’t know who I was since I had always just identified as an athlete.

My dreams of playing a college sport became just that: dreams. I went off to college and wasn’t good enough to play on any of the teams. It turned out that God had other plans for me. In high school, I was part of a ministry called Young Life that made a big impact on me; my leaders had been my freshman football and baseball coaches.

By my sophomore year in college, the doors had opened for me to lead Young Life and coach high school football. I also began making music and doing spoken word poetry to bring hope and light to people who were in a dark place. Little did I know, my music and poems would soon be speaking to me.

Through college, I had more and more difficulties performing physical functions that had been easy for me in the past. I couldn’t skate or rollerblade. I couldn’t slalom ski. I didn’t know what was going on but I also didn’t think too much about it because I was still playing pickup football, basketball, and tennis.

The final straw came when I was 24 and trying to paddleboard in the ocean. I tried again and again but couldn’t keep my balance. I decided to see a physical therapist, wondering if maybe I had too many undiagnosed concussions that were now impacting my balance. This led to several appointments with a neurologist, a CT scan, and many blood tests which eventually confirmed a diagnosis of Friedreich’s Ataxia.

After being diagnosed I struggled with feeling depressed and hopeless. I felt like no one could relate to my experience. I felt like all my dreams, goals, and aspirations had died. I felt defeated thinking about all the things that I won’t be able to do with my wife and kids. What I came to realize is that I had two choices. I could sit around and feel sorry for myself about what I don’t have or I can make the most of what I do have.

Through all of this, my faith in Christ has shown me that no matter what happens, God has a purpose for my life. This purpose is what I aim to fulfill.

I have since put my experience with Ataxia into a hip-hop album called Pressure Makes Diamonds. I am also working on several new creative projects in which the songs, poems, and videos have a two-fold intention. On one hand, they are meant to encourage those who are facing trials, especially involving Ataxia and other rare diseases.

I know that my experience of feeling hopeless is common among those with such a diagnosis. I want to encourage people to make the most of their situation and pursue their passion and purpose, even if it looks different than what they may have imagined.

On the other hand, I hope that my songs and poems will raise awareness around Ataxia and other rare diseases, leading to further developments of treatments.

I’m not sure what this will all lead to, but my ultimate vision is a foundation that both uses multimedia to raise awareness and takes action against rare disorders.

Thank you for taking the time to hear my story.