Name: Anthony Monaco
Where do you call home? Boston, MA
Education (degrees): Some College
What is your relationship/living status? I live alone in a wheelchair accessible apartment. I have a girlfriend. It’s a new relationship, and it’s going wonderfully.
What is a typical day for you? I guess it depends on the day really. On Mondays, I run all my errands (food shopping, etc). The rest of the week, I relax at home, stretch, light yoga. I recently got into cooking so I’m honing my skills. Most of my friends are scattered across the country so we’ll play the PlayStation together to hang out. I also go to a lot of shows in the Boston area.
How long have you known you are living with FA? I was diagnosed when I was 19. I was always very active (soccer, wrestling I even ran XC!), but I was always somewhat awkward physically and I never knew why. I ran funny, kids made fun of me, no big deal. I learned to go with it and laugh at myself. As I got older, my physicality lessened and I became a bit more awkward and wanted to find out why. I went to an ENT (because I thought it was an inner ear/equilibrium thing). They checked my ears and to my surprise, they were fine. I then asked, “Well then why do I walk funny?” He watched my gait and referred me to a neurologist. After a few blood tests, I was told I had FA. No one in my family has it; I had never heard of it until I was diagnosed.
Describe your transition to walker/wheelchair? My transition into a wheelchair was long and drawn out due to my stubbornness. In my early twenties, I could walk on my own without assistance (albeit weird looking). Around age 24, I started to hold on to whomever I was with. By my mid-twenties, I had gotten a cane but I would still need to hold on to someone to be able to walk. I knew that I should be in a wheelchair, but I wanted to walk for as long as I possibly could. Knowing that time was near, I was fitted for a wheelchair. Still walking at age 27, I was with my best friend and he was having a difficult time walking with me so he said: “You know, you could really start using a wheelchair.” Hearing him say that, I knew it was in fact, time to start using one. So I started to use a backup wheelchair permanently until my fitted one was made a few months later.
What do you like to do to stay active and what kind of exercises work for you to stay strong? Well, to be honest, I don’t really do much to stay active. No reason other than I don’t want to? Maybe that sounds bad, I just don’t feel like it. I can probably work out, but like I said, I don’t want to (lol). I’m still pretty strong regardless. All upper body, but hey, it works for me.
Do you have any hobbies or special interests? I played the drums for ten years (ages 8-18), but FA has prevented me from continuing my passion for drumming. I also draw and paint. I went to Art School but didn’t finish. My control has gotten much worse in the past few years so I haven’t really done much recently. I should get back into it, but it’s hard to find the motivation. I used to draw as a hobby and now it’s just not as fun as it was. It’s all about your mindset though, so really I’m just making excuses (haha).
What is a good trick to make daily life easier? Having a good support system (friends and family).
When FA gets you down, what do you think /do to feel better? It can be frustrating at times. When that happens, I usually let out a loud grunt or just yell a little bit (not directed at anyone, just like a loud “UGHHH”). I also remember that a lot of people have it much worse than me, and given the circumstances, I do all right.
What is one way living with FA has POSITIVELY affected your life? This is actually a very good question. Since I started using a wheelchair, I get preferential treatment almost everywhere I go; whether it’s VIP parking (handicapped parking lol), I get into places for free, people get out of my way in crowds, I get to skip lines almost everywhere, people hold doors open for me and are just overall nice to me.
What is a favorite motivational quote of yours? “When the power of love overcomes the love of power, the world will know peace” Jimmy Hendrix. “You miss 100% of the shots you don’t take - Wayne Gretzky” – Michael Scott
What is the best advice you could give to a person who has been newly diagnosed with FA? Research FA and do what you think is best for you.
What is the first thing you want to do when a cure/treatment is found? Besides walk (lol)? It would definitely be to play the drums; play basketball.
“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? To me, it means that I control my life and my situation. Honestly, I don’t really feel like I live my life in the face of adversity. I mean, I guess I do, but I don’t see it that way. Every day presents new challenges, but just because something is/may be difficult doesn’t mean I’m going to shy away from it.
Tell us a little more about you… I don’t know if you can tell by reading this, I’m a very happy guy. I’m funny, check that, I’m hilarious, check that, I am literally the funniest person ever (not really but you get the idea).