December’s First Friday speaker was Joey Mullaney
. A native of Leominster, Massachusetts, Mullaney was diagnosed with a rare neurological disorder called Friedreich’s Ataxia (FA) at 13-years-old. Despite the challenges FA has presented in Joey’s life, he has persevered, constantly pushing himself to explore life outside of his comfort zone. He now speaks publicly about coming to terms with his diagnoses and making the most of time.
Joey presented his story in the template of the Hero’s Journey
, originally introduced by American professor and mythologist Joseph Campbell.
It has been interpreted in many ways since then, but Campbell’s original 12 steps are the most well-known. An individual starts out in the ordinary world, then makes their way the special world, ending up back in the ordinary world as a changed person.
“Before I begin, I want to preface I am not a hero. I have not completed all the steps, and I don’t believe I should anytime soon. Hopefully one day, but I think all of us here today have our own path along the hero's journey, and I am just trying to show you all that.”
As a child, Joey was able-bodied and athletic. He grew up with his twin brother Sean and two older siblings, Kayla and Ryan. Kayla, who is six years older, was also diagnosed with FA at a young age. Young Joey played all the sports he could, and had dreams of going on to the NBA as the next Kobe Bryant.
This all changed when he was diagnosed with FA.
“It was hard because I knew what it was from my older sister. She also suffers from it, so I saw first hand what she had to go through, especially in high school being tormented...giving up on certain things in order to survive. I knew I had a tough road ahead of me, and it was really upsetting to know that’s what I had to face.
FA is an extremely rare neuromuscular degenerative disorder that affects 1 in 50,000 people. It slowly gets worse as time goes on and although there are dozens of trials all over the world, there is currently no cure. Some of the symptoms noticed early in Joey were imbalance, slurred speech, and hearing complications. With FA, these symptoms start slow and become more evident with time.
Joey attended Lawrence Academy
in Groton, Massachusetts for high school. His FA was not noticeable at the time, so he went in with the mindset that no one would know about his condition. He was no longer able to play sports, which was particularly crushing to the then teenage boy.
“That was probably the toughest part. I tried to be a tough guy and not let people know I had FA. I didn’t want people to think less of me or feel bad for me or pity me, or just think I couldn’t accomplish anything in my life.”
A friend at Lawrence Academy noticed Joey was struggling to walk and asked him what was wrong.
“I froze, turned bright red and had no idea how to respond, so I deflected that and brought up something else. Later that week, my advisor, the current Dean of Students at Lawrence Academy, and my twin all sat down and realized the student body needed to know. We thought if they knew they’d be able to help. That was really hard for me. As I explained earlier, the fear of people knowing really took over me. But, I knew things needed to change in order for me to be me.”
The next step in a Hero’s Journey is finding a mentor. Joey says he can’t credit one mentor and that it takes a village. This village became evident at a school assembly when his diagnoses was announced to the student body.
At a normal morning assembly Joey’s twin brother Sean, his advisor and the Dean of Students told the student body that Joey had Friedreich's Ataxia. Joey decided not to be there, because he didn’t want to witness the possibility of a negative response. He credits that 15 minute assembly, that he didn’t even attend, with changing his life for the better. The student body helped him in simple ways, like holding the door when he would leave a building, moving backpacks out of the way so he wouldn’t trip, or helping him around campus. Once he realized the support around him, he was really able to shine and Joey’s confidence began to soar.
Senior year he served as basketball manager, and on senior day his coach asked him to shoot the ball at the beginning of the game. He originally said no out of fear, but 20 minutes passed and he couldn’t stop thinking about the offer. He decided he would do it, but under certain conditions: he wanted to dunk.
The coach drew up the play and, with help a 6’8”player who lifted him to the basket, Joey dunked for the first time. This breathtaking moment was picked up by news stations such as NBC, ABC, Sports Center and Good Morning America.
“I know it’s a weird brag saying all that, but it was really helpful for me to see the amount of support people were giving me from that. Social media really helped me out back then, because I saw people commented positively, sharing such great things about it and it really helped me out.”
His senior year of high school, Joey was chosen to give the senior speech. He credits this as the start of his speaking career. Although he was nervous going into it, he felt amazing and empowered after.
Joey brought all the confidence that Lawrence Academy had instilled to Quinnipiac University.
While every person’s first day of college is nerve-racking, his was especially so because it was also his first time using a scooter. Despite that, he went in with the mindset to be himself and not change. He joined a fraternity, was an orientation leader, and served as student body president
his senior year. Joey did all this with confidence and a large support group, including his family and great people he met along the way.
“My biggest enemy of all time is definitely FA. What I'm going through and what I have to deal with everyday. There are good times but, I’m not going to sugar coat it, there are bad times. It can be hard, but you have to really appreciate the pros in order to move on, because the cons can really bring you down. It’s really taught me to appreciate what I have, what I can do, and to be myself. FA has taught me a lot about stepping outside of my comfort zone, and I really implore doing that because you never know what can truly happen.”
When it comes to conquering things outside of his comfort zone, Joey is in no way kidding. He hiked a mountain with his fraternity brothers in college, officiated his cousin’s wedding, and traveled overseas to Colombia. Currently, he is in graduate school studying Communications. He runs a website where he writes a bi-weekly blog, and continues to give speeches about his journey. He is also working on the manuscript for his first book, which he hopes to publish in September. His dream used to be to change the world, but now he wants to narrow the scope down to his world in particular.
“I realize that the world is way too big to change. I’ve shifted gears and I want to change MY world, meaning I want to better the people around me - my family, friends, community, those people who support me and know me.
My story is far from over. I still have a lot to go. I didn’t realize it when I was in high school, but understand there is a lot to look forward to and a lot you can do. If you don’t know what you want to do don’t freak out. I still have no idea. I just take every opportunity with a grain of salt and go for it.”
Thank you to Joey Mullaney for sharing his story of perseverance with Tilton School!