Name: Anthony Monaco
Did your diagnosis impact your friendships and relationships? My diagnosis didn’t affect my relationships.
What do I wish people knew about FA? That FAers are resilient, and that we have to use so much energy just to do any simple tasks. And that a lot of us were different when we were younger, and it can be a struggle to slowly watch your abilities be slowly taken from you.
What did your life look like prior to diagnosis? Before my diagnosis, I was an artist all throughout school, a fine arts major, apprenticed to tattoo and worked in the industry for nearly 10 years, and grew up playing the drums and being on the drumline in high school.
Are the healthcare providers in your town familiar with FA? Is there support available from the healthcare system? I moved to Boston from Florida in my early 20s, partly because they have some of the best doctors in the country. I immediately found a neurologist who specializes in FA. I’ve been seeing him for over 10 years now. My primary doctor got me in touch with a social worker that was able to help me hire a PCA and move into a wheelchair-accessible apartment, since I’ve been using a wheelchair permanently since March 2017.
What is your favorite part of the day? My favorite part of the day is hanging out with my partner, who I’ve been with for almost four years. She helps me stand, makes me laugh uncontrollably, is so much smarter than me, and just brings me so much joy.
If I were traveling to your country to visit, what tips would you give me about your favorite attractions, activities, etc? As far as giving you advice on coming to [the United States], it would all depend on what your interests are. If it’s warm weather, beaches and theme parks, I would say Florida. If you like state parks, the West Coast, Yellowstone etc. would be a good destination. If you’re into sports and history, the Northeast is for you.
There is an upcoming CrossFit games competition coming up in September. When did you start with CrossFit games? I started working out with weightlifting in 2020 along with physical therapy but thought I could be doing more in a functionality sense. I found a gym that specializes in training people with disabilities called Fit to Function. I started in the fall of 2023. I found out that the opening for the games was in February, so I thought “I’m already doing these movements, so I might as well compete in the open.” Surprisingly, I made it to semis, and now I will be participating in the games less than a year after starting CrossFit.
If I had to give someone advice following their diagnosis it would be: [FA] does not define you. You can achieve things that you didn’t think were possible.
Interview by
Dragana Obadić