Find out how one man transformed his physical weakness into a mental strength.
Tommy Rayis & his wheelchair are an iconic duo on Stony Brook’s campus—one you just can’t miss.
In fact, the only thing racing faster than his wheels are his ambitions and thoughts about life.
Upon graduating from Stony Brook University in August of 2021, he’s pursuing a lifelong dream:
To write a memoir called Rise Above, a story which reflects on his physical condition, known as Muscular Dystrophy (MD). While his muscles have shrunk; his mentality, faith in God, and positive outlook on life are stronger than ever.
Here’s his story.
Growing up with Muscular Dystrophy (MD)
Tommy, 25, has battled with MD his whole life, and faced his first setback when he lost the ability to walk at just seven years old.
“It was hard because, when I was young, I'd fall but not know what was wrong with me,” he said.
The condition is caused by a gene mutation in a protein called dystrophin. As his body grows, his muscles shrink, leaving him with about 50 percent of the muscle he needs to walk, stand, or swim. But Tommy’s still known around campus as the Tsunami — and for good reason.
“It’s a long story,” he chuckled, “In freshman year of high school, I took earth science and learned about how these waves can be destructive. But I want my vibes to be waves of positive energy, which make people happy and smile,” he said.
This mentality was instilled in him from his fifth grade teacher, Mr. McGlocklin.
“He taught me to never give up on yourself, don’t doubt yourself, don’t be afraid to be yourself.”
"But staying positive isn’t easy," Tommy says. “It’s hard to do, but I need to always need courage and to stay positive, no matter the circumstances. Life’s hard, so you’ve got to make the most of it.”
The toughest test came when he was 13 years old.
“My life has been difficult, when I finished middle school, life got really interesting,” he said.
“I got scoliosis correction surgery, which if I didn’t get it, my spine would push on my heart and lungs. I had to do it. Dr. Lebiack was great, he did the 7 hour surgery. They sent me home after 4 days, but at 6:00 p.m., I had a fever, we had to go back to the hospital. They found a staph infection, and had to reopen me,” Tommy explained.
“At one point, I was in so much pain, I couldn't get out of my chair. I needed a Picc Line in my arm, got Antibiotics, and had to get a transplant from my mom’s blood, because I was anemic. I learned to find inner strengths and positives through God, to pull through,” he said.
Family
It was then that he realized his mother, Lamya, was the most important person in his life. Since then, Tommy’s become a family & friends kind of guy. It’s a mentality instilled by one of his favorite film series, The Fast and The Furious, which prioritizes family over everything.
He has two older brothers, Pat and John. His pets are Misty, his 18-year-old cat, Lela, his 5 year-old dog. Home is huge for Tommy, because that’s where he receives the love and physical therapy of his parents and friends.
Friends
But lifetime friend Peter Morgan is also huge in Tommy’s life. He always takes photos and brings him to on-campus events like basketball games.
“When we played Delaware, my best friend for 23 years, he took me to that one, it was horrible getting in, the rain, they didn’t let us go the easy way, we beat them by 2 points, it was back and forth, it was sick!” Tommy said.
At Stony Brook, Tommy also met Tyler Alvarez back in December 2, 2018. Tyler’s become a dear friend, and always encourages him to follow his passions.
“Tyler, the way he keeps working, he knows what he wants to do, he knows so much about lacrosse that I don’t know,” Tommy said. “He’s awesome.”
Tyler also introduced Tommy to meet members of the Sigma Delta Tau sorority.
They helped Tommy join the Muscular Dystrophy Association (MDA) Muscle Walk back in October 2019 by fundraising for “Stony Brook Tsunami.”
Since then, Tyler and Sigma Delta Tau have become huge parts of Tommy’s life.
At Sigma Delta Tau, Tommy met another close friend, Halyna Sabadakh, who he went to basketball games with before COVID-19 hit last March.
COVID-19
However, it’s been about a year since Tommy has been able to take in-person classes at Stony. His condition weakens his heart and lungs, which are vital organs targeted by COVID-19. This puts him at high risk for developing COVID-19 symptoms. As a result, home sickness kicks in from time to time.
“I miss campus. Being in the library, meeting up with people, going to basketball games, it was a good experience,” he said. But this May, he hopes to walk during the commencement ceremony.
“My life is getting better because I’m vaccinated and I’m looking forward to warmer weather,” he said, optimistically.
Future
Upon graduating, Tommy wants to start a history podcast and work at a museum, spreading cheer and positivity along the way.
“I want to put history and science together. Go in a different direction. It’s not popular, but I’m assuming there’s a possibility to mix it together.”
To round up his three year journey, Tommy says his undergrad was full of networking, studying, and spiritual rehabilitation.
Faith
“My faith in God, my mother’s prayers, and the support from my aunts and uncles got me through this. It was tough, but music got me through it too. At Stony Brook Hospital, you could get a laptop for a few hours, music helped me.”
His favorite band is Muse, which he bumps to when traveling across campus. “My friend was thinking of putting a stereo on my wheelchair,” Tommy joked.
With the semester winding down, Tommy looks set to walk in the May commencement as one final hoorah in his undergraduate career. But moving forward, he’s got bigger goals.
While Tommy’s muscles are smaller than in years prior, his heart is bigger than ever. His desire to teach others about perseverance in life. So don’t be surprised when you see him working at a historical museum, holding his autobiography, Rise Above.
This is one Tsunami you don’t want to run away from.
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