Meet Tommy "Tsunami" Rayis. At age 24, he's a transfer student at Stony Brook University who is set to graduate May 2021. He is close with his friends, he is grounded by his faith in God, he enjoys history, and he has muscular dystrophy.
Muscular dystrophy (MD) is a chronic illness that weakens an individual's muscles over time. The culprit is a deficient gene that is supposed to promote muscle growth.
I had the opportunity to chat with Tommy, who was very eager to share his story with me, over the phone. An in-person interview could have put Tommy at high risk for developing worse COVID-19 symptoms because, as Tommy explained to me, MD weakens muscles in the heart and lungs. He was very down to earth and often spoke without me having to prompt him. I could tell he was very appreciative of life, in spite of having MD. He has worked hard to get where he is now, and he was a pleasure to talk to.
For our readers, could you briefly explain what [muscular dystrophy] is?
Well, it's a gene mutation... there's a protein called dystrophin. It promotes muscle growth, so I only have 50 percent of muscle. Like, my body grows, but my muscles get weaker as I age. First, I lost the ability to walk at age seven, and then it takes over your lungs and heart. My mom does everything for me. Most of what I do is drive in my wheelchair. When I do work, I do it with my aide. I dictate to her what I want her to write. At first, I didn't like school when I was little. It was hard being social because I didn't know what was happening to me. But also, I had a good support system... I was actually supposed to move to California, but it didn't end up happening, and I ended up going to Suffolk [Community College]. When I was transferring to Stony Brook [University], it was hard because I had [people] with me who [weren't] motivating me, so I went to the transfer advising office with my mom late that night, and luckily the guy actually made a phone call for me to Stony Brook Admissions and told them about my 3.8 GPA, so I got accepted to Stony Brook. I was so happy.
How long have you been at Stony Brook University?
Two years, I'm starting year three.
How was it being a student on campus? Did you find that Stony Brook was very accommodating?
Yeah, it's very accommodating. The [Student Accessibility and Support] services gave me everything [I needed], and I made a lot of friends. I did the [commuter assistant program] where I met somebody, and he was really nice. The people were great. I met a few people from organizations, and they did an event with me last October: the Muscle Walk for the [Muscular Dystrophy Association].
What kinds of clubs and organizations are you a part of?
I wasn't part of anything... I met [people from] the Sigma Delta Tau sorority, and they became my friends. I don't really do any clubs because I have PT (physical therapy), so I have to be home at a certain time.
Obviously, [the COVID-19 pandemic] is going on; what has that been like for you?
It's tough but I'm staying home. I'm still healthy. My [physical therapists] are coming to me, but I just can't go out. [My] doctors tell me to be extra careful. [School] is gonna be different online, but I like how [Stony Brook University] is doing Zoom session classes.
Are all your classes online this semester?
Yeah.
So, you are a high-risk individual [for COVID-19]... how is everyone else at home? Are they scared to go near you?
Everybody's good. My mom's taking all the precautions.
Do you live with anyone else besides your mom?
My two brothers. One's 26, the other is 28.
How are they? Are they also a part of your support system?
Yeah, they're good
And you're the only one in your family who has [muscular dystrophy]?
I'm the only one in my family with it. It's usually people in the family who have it, but nobody else [in my family] has it. I used to be really shy. I used to be in special education until fifth grade.
Tell me about that.
Well, I didn't believe in my abilities to do as well as other students, and I didn't like reading. I had a fifth grade teacher who encouraged me. He said, "believe in yourself, you can do it." In middle school, I transitioned to [regular classes], and I got all As. I worked really hard. I got all As in high school. I still get As and Bs at Stony Brook.
What are you studying at Stony Brook?
I'm a [history major]. I'm learning a lot.
What do you want to do with that? Do you want to be a teacher, or do you just like history?
Maybe work at a museum, or some career like that.
Do you intend to stay in New York, or do you want to put yourself out there more?
I have to stay in New York because when you change services [regarding MD] to other states... it takes a while to clear.
What do you think will be the first thing you're going to do once [the pandemic] is over?
I don't know. Maybe go somewhere. I would definitely go to Stony Brook. It's going to be interesting checking on my friends there.
Are you still keeping in touch with them, like through chat, text, and stuff?
Yeah, we do all that.
Have your friends ever visited you?
My friend came over, but he wore his mask. He's actually in grad school at Stony Brook; he's doing finance. He graduated in 2019, he's really nice. I'm supposed to graduate in May.
Do you think you're going to get an online graduation, or do you think it's going to be in person?
I don't know, actually. I hope they have something.
Hopefully... even if [commencement] is online, maybe some departments will do something special later on.
There's not that many students in the history department, either.
Are there any hurdles you've endured due to your condition?
I had spinal fusion surgery, but I had four infections. It was rough. I spent a lot of time in Stony Brook Hospital. They sent me home [after my surgery], and I had a fever. They said I had an infection. They had to reopen me to clean me up... I had to be on antibiotics for seven months.
How old were you when that happened?
I was 14 or 13. I couldn't get up because I was in so much pain. I missed the first half of freshman year of high school.
Were you able to catch up okay? Were teachers accommodating for you?
Yeah, they were. I got homeschooling. My faith in God got me through it... I worked so hard and I graduated high school [and now], I'm at Stony Brook. And I was at Stony Brook Hospital. The university is not that far from the hospital.
Do you want to talk a little more about your faith?
Jesus, Christ, God, all that, it got me to focus on something that I can [use to] help others be happy, you know?
So would you consider yourself a religious person? Or spiritual?
Spiritual.
Do you usually attend [religious] services?
I do, sometimes.
Has that been rough with the pandemic? Are you able to go to online services?
Not really, but my mom teaches me, and all my aunts and family [members] are faithful. I'm actually really happy because I can't believe it's already the end of August.
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