Reaching New Heights With Running | Eavan O’Neill

Welcome to My Hero 360! In this impactful interview, Jillian Comstock sits down with Eavan O’Neill, a marathon runner who was diagnosed with a form of vision impairment just months before the COVID-19 pandemic rocked the world. She shares how her diagnosis and the pandemic resulted in the hardest year of her life, but running eventually helped her heal and become an inspiration for so many with vision impairment.

Key Highlights: 

• Hear how Eavan O’Neill used running as a coping mechanism for her Stargardt’s disease diagnosis.
• Learn how Eavan navigated the emotional toll of a recent health diagnosis at the same time the COVID-19 pandemic changed the world.
• Understand the stereotypes Eavan had to overcome in navigating her journey with progressive blindness.
• Be inspired by Eavan’s support group, Brightside, which is helping others live full, rich, and beautiful lives.

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Transcript:

Jillian Comstock:

Hi, everyone. Welcome to my Hero 360. My name is Jill, and today is a special day, as we are diving into the extraordinary journey of Eavan O’Neill. At My Hero 360, we’re all about amplifying the voices of heroes worldwide, those remarkable individuals whose stories ignite inspiration and drive positive change. Today, it’s an honor to have Eavan here with us graciously sharing her story.

Eavan, I’m just so excited that you’re here. I came across one of your TikToks totally by accident, although I think it was the universe stepping in for us to share this moment now. The TikTok I came across was one where you were documenting one of your runs. I remember being immediately impressed by you because you seamlessly ran 9 or so miles, and made it look like a piece of cake, first of all. But you looked like you had so much fun doing it, and I thought to myself, “Wow, that is incredible.” I then became so interested, and I was watching some of your other videos on TikTok. I figured out not only were you running 9 miles, but you were doing it with a vision disability, and that just floored me. You were so inspiring, and I feel so honored to have the opportunity to interview you today. Thank you so much for being here.

Eavan O’Neill:

Oh, my gosh! That was such a great introduction. It was so well-spoken. Thank you; I’m so psyched to be here.

Jillian Comstock:

Before we begin, would you like to introduce yourself to our audience, give us a little glimpse into your background?

Eavan O’Neill:

My name is Eavan O’Neill. I’m 26 years old. I’m a Maine native, but I live in Boston, Massachusetts. In my full-time career, my full-time work, I work at Massachusetts General Hospital in fundraising for the cancer department, which I can go into all about what that sort of means, but that’s the gist of it. I have, as Jillian said, a vision impairment. When I was 21 years old, I was diagnosed with Stargardt’s disease, which is a form of inherited macular degeneration, and it affects your central vision over time until you go blind. I know I post a lot about running, and a lot about my life with low vision, but it has turned out to be nothing but a silver lining for me, and has become absolutely my superpower, and sort of my, for the lack of a better word, eyes into life.

Running has become just one of those things that makes me feel really strong and helps me continue to build my confidence and resilience in having this condition. I could go on. I have 3 sisters. That’s a huge part of my personality; it has definitely shaped me. I have a little bit of that, because I’m the second oldest, I have a little bit of the oldest child protectiveness and want to do the right thing by my parents. But because I’m also the middle, I have a little bit of that nomad lifestyle, and do your own thing, and kind of off the beaten path. That’s a little bit about me, I think.

Jillian Comstock:

Your senior year of college marked a significant turning point in your life. Could you share some details about the events and circumstances that led to this pivotal movement?

Eavan O’Neill:

I went to school in upstate New York, sort of in no man’s land, middle of nowhere. Small, small liberal arts school. It was perfect for me because I was coming from a very small high school in Maine, coastal Maine. I didn’t want to jump into too big of a pool. It was 2,400 students undergrad, which felt perfect for me, and I got to know everyone on campus really well. That will become important as I tell you more about my story. But freshman year, I guess I should backtrack to senior year of high school is when I got glasses. I started not being able to see the board that well in class. I was a big soccer player and athlete in general—basketball, soccer, and lacrosse, all sports that involved using a ball, and having to catch, or dribble, or whatnot. That also became super difficult.

I noticed my eyesight was bad as I grew up, but that’s sort of when I first noticed that, okay, I really need glasses, and I really need my vision to be corrected, because it’s affecting the way I am, how I am as a student, and also how I am as an athlete. I got glasses. Unbeknownst to me, they weren’t really doing anything, but I went on to my freshman year of college, and sophomore year, and I decided to declare an English major and PCA major. I did a double major. Essentially, PCA is the liberal arts version of marketing and communications.

It was a lot of reading and writing. It was a reading- and writing-heavy major. That’s when, as I got deeper into my major and deeper into my life at St. Lawrence, my eyesight definitely was worsening and worsening. I started to not be able to recognize people as they passed me on campus. People would say like, “Hey, Eav,” or, “What’s up, Eav?” They’d be 5 to 7 feet away from me, maybe even closer, and I still wouldn’t know who it was. This was the fall of my senior year.

Junior year, my eyesight got really bad. I remember my friends and I would always joke like, “Oh, Eavan, you always say…” It’s funny now because of what my life has become, but we used to always joke like, “Eavan, you always call people by the wrong name, or this one’s interesting, you always look above me in order to look at me.” Which is what a lot of people with Stargardt disease do. But unbeknownst, I didn’t know that that was what was happening me at the time.

Long story short, senior fall, I went home, got my eyes checked by my optometrist that I had been seeing for years, and she said, “I think you should go to Maine Eye Center. Some things not adding up here.” I remember specifically asking her if she was worried, and she said, “I’m not worried; I’m more just perplexed. I haven’t seen really anything like this before.” I knew it was somewhat serious because they had me at Maine Eye Center the next morning at 8:00 a.m. I went with my mom, and we were there all day until 4:00 p.m., just doing tests that I had never done before, like dilating my eyes, and they have this crazy one that turns your eyes yellow. All these different tests that I had never done.

At the end of the day, the doctor sat me down and said, “You have Stargardt’s disease.” Or actually, the doctor sat me down and said, “You have cone dystrophy.” Essentially, cone dystrophy is like an umbrella term for an eye condition that has to do with your cones. Your eyes are made up of rods and cones. Your cones are your central vision, and your rods are your peripheral. They knew something that was going on with the cones in my eyes. They weren’t working properly, and something was not right, but they couldn’t officially diagnose me with Stargardt’s disease. They basically don’t have this machine, called an electroretinogram, that can look back at your retina, and take pictures of your retina, and be able to tell if you have Stargardt’s disease. She sat me down and said, “You are going blind. If you have Stargardt’s disease, which is what we think you have, there’s no cure. Have a nice day.” My mom and I were so terrified.

I had never heard of this. I didn’t know these types of things existed until the day I was diagnosed. I was super confused, and fearful, and felt super isolated. That’s essentially what happened my senior year of college. Then I went back to my senior spring, well, I went January 15, 2020. I was still, you know how when you go to college, I don’t know what it’s like at your school, but we had a month-long break for Christmas? A super long break. I was lucky enough to get into Mass Eye and Ear pretty early, because it’s pretty hard to get appointments there just because it’s such an amazing hospital. It was at Mass Eye and Ear on January 15, 2020, that I was officially diagnosed with Stargardt’s disease by Dr. Rachel Huckfeldt, [MD, PhD,] who is one of the retina specialists there, who’s amazing, and so talented, and kind, and just a great physician.

Then I went back to my senior year knowing I had this thing called Stargardt’s disease, not really knowing what that meant for me, and what it meant for my future. Then COVID hit, and I was like…

Jillian Comstock:

How did you navigate the emotional landscape upon discovering your diagnosis of Stargardt’s disease? Amidst the backdrop of, you just said, the pandemic, what were your emotions that surfaced during this time? I can only imagine.

Eavan O’Neill:

Yeah. Honestly, Jillian, I think back to 2020, so I’m 26 years old now, I was 21 at the time. Like you said, I’d just been diagnosed, and then 2 months later, the pandemic hit, and we were sent home from school, and all these things that were supposed to happen weren’t happening anymore. I think back to 2020, and I was so down. It was probably the hardest year of my life by far, for a multitude of reasons. I mean, I had a life-altering diagnosis to start the year off, but then a global pandemic a couple of months later. Then I had a few other personal things happen the late summer that I was just … It was a really, really hard year.

How did I navigate the emotional landscape? It was hard. It was really hard. I rely heavily on my family and my friends. What made it more difficult is that no one knew what I was going through. Because Stargardt’s disease is so rare and so different for everyone that has it, it kind of manifests itself in people differently, and no pun intended, it looks different for every person that has an impairment or is blind. This was my first few months knowing that I had this thing, that was irreversible and incurable, and it was hard to explain what that’s like to a friend or family member. I think there are things that are universal that people feel like grief, and loss, and sorrow. It was hard because I had this intense feeling of loss, but it’s like a slow burn, because I was losing this, but I knew it was going to be years of loss.

At first, I’m not going to lie, I was really down. When the pandemic hit, I went home, and I felt super low, and really, for the lack of a better word, depressed. I always remember that feeling, that I use today, that drives me in my support group. Anytime I feel worried about posting on TikTok or Instagram, I think back to that 21-year-old girl who was so terrified, and alone, and really isolated. I know that if I had had someone like me now at 26 when I was 21, then it would’ve made the world of a difference. That’s something that drives me to continue to do what I’m doing now.

Jillian Comstock:

It’s interesting, because as I do these interviews, sharing people’s stories who are going through a similar experience such as yourself, I’m learning that this feeling of isolation is at the forefront of the emotions that people deal with. I think it’s a main reason why so many people like yourself come to social media to share their journey, because you’re helping others feel less alone, but you’re also garnering support for yourself. I think it’s crucial in navigating these experiences and finding strength in each other’s shared experiences, for sure.

Eavan O’Neill:

Absolutely. It’s such a common ground. I think you’re right. I think you have to feel this intense feeling of isolation and loneliness, and you can pick a path. I think you can pick a path of wanting to share that with others and be vulnerable. Or you can pick a path of continuing to be isolated, and you have to go the right way, of course. Build yourself back up.

Jillian Comstock:

During this period of profound isolation in your life, you turned to running as a coping mechanism. Could you delve deeper into how running specifically impacted your journey? What was it about running that resonated with you and provided such significant support?

Eavan O’Neill:

Yes, I would love to talk about that. Like I said, when I came back from school, we were in the depths of COVID, and no one was seeing each other; no one knew what was going on. I had always been an athlete. I had always enjoyed movement. I loved soccer the most, by far. I loved basketball, and lacrosse, and other sports. I love my sisters, and they would definitely come in the backyard and play with me, but if I wanted to kick the ball around, or pass a lacrosse ball or something, but … One of them was in Boston on the front lines as a nurse. We were all kind of all over the place. I knew I needed some sort of movement that didn’t involve other people that I had to do on my own. I had always been fine with running, but I never ran more than a mile or 2 miles, because when you’re on a sports team, you run, but you’re doing more sprinting than running.

Anyway, I went out for a run a couple of weeks after I got back from school because of COVID. I did a little 2-mile loop, came back to my house, and the next day I did it again. My neighbor, her name is Madison, she was furloughed from her job in New York City at the time. She is a huge runner and was a big marathoner, and she had done multiple marathons at that point. She and I grew up across the street from each other, and we were close, but we weren’t nearly as close as we are now. She caught me at the tail end of my 2-mile loop and was like, “Why don’t you do 2 more with me? I’m doing 4.” I was like, “No…” But I wanted the company and appreciated the company. I was like, “I’ll just try it.”

Anyway, I ended up doing another 2 with her, and I was like, “Okay, I can do 4 miles,” that’s a big accomplishment for me. She was like, “Why don’t we meet again tomorrow and do it again?” Anyway, we met again the next day, and the next day. When you run with someone, by default you talk to them, unless you’re both putting headphones in. But one of my favorite things to do is run with people and talk, because I think it can be, A, it makes the run go by faster, and B, you get to know people really well through movement and conversation.

I told Madison everything that had happened about my diagnosis, how isolated I felt, how terrified I was. She just listened, and learned, and was really open with me, and that’s exactly what I needed at the time. Thinking back to it now, I think I put running and vulnerability in the same category for me, and I was like, wow, it feels so good to move my body, but also to get this off my chest and feel like I have this confidant who’s listening to me and wants to share this burden with me, pretty much.

Madison and I continue to become closer and run every day. Then she suggested that I do a half-marathon, because I had told some of my friends in college, and I had told my boyfriend at the time and his family, and obviously my family, but no one in my circle in Maine and at St. Lawrence and other parts of my life really knew what was happening, and maybe why I wasn’t saying hi back to them at the coffee shop, or why I wasn’t saying hi back to them as they walked by me on campus. I knew I needed a way to tell people. I knew I wanted it to be something positive, not like, “Oh, I was diagnosed with this thing, and woe was me.” I needed it to be uplifting because that’s how I wanted to move through life with this.

She suggested we do a half-marathon and turned it into a fundraiser. I had never dreamed of running 13.1 miles, but … Well, I think she suggested a marathon, and I was like, “No.” I was like, “Okay, let’s do a half-marathon.” Anyway, all the half-marathons were postponed or canceled because of COVID. We decided to do our own around my town, and we ran 13.1 miles. I told everyone in my life what was happening, and we raised $20,000 for the Foundation Fighting Blindness, and it was best day of my life, best experience ever. It’s now led me to the career I’m in now and also to my life now as a marathoner. I guess I could say now ultra-marathoner.

Jillian Comstock:

Wow, that’s wonderful. First of all, we’re partners with the Foundation Fighting Blindness, so that’s wonderful to hear. My second thing was, talk about the universe stepping in and bringing you guys together. Because you guys seem to really both meet each other in those times of your life, and I think that’s just absolutely beautiful. Did you run in the Boston Marathon this past week?

Eavan O’Neill:

No, I wish. No, I ran the Boston Marathon last year, so I ran 2023. I spectated this one in 2024, and I need to run again 2025. But yeah, I ran 2023.

Jillian Comstock:

That’s awesome. The more I learn about your story, the more inspiring you are, genuinely.

Eavan O’Neill:

Oh, my God! Jillian, that’s so nice.

Jillian Comstock:

It’s true. Your senior year of college looked a lot different than most, and yet you persevered and didn’t let your vision impairment stop you from living and achieving milestones. I think that’s a huge testament to your strength and resilience. It needs to be noted.

What are your goals as you enter this new part of life as a 26-year-old? There’s so much that changes during this part of life. These experiences can be both exciting and challenging for any person. I know myself, I’m navigating entering the workforce and seeing life outside of school. I’m just curious what your goals are as you continue.

Eavan O’Neill:

I have a lot of goals that probably all filter up to a main goal for me, which is to … This has been sort of the same I goal I’ve had for a while, but it just gets more and more important to me, and it takes different forms, I think. That is basically to be the person that I needed when I was first diagnosed for others. It was like jumping off a cliff when I found out that I had Stargardt’s disease. There was not much out there. I didn’t see a lot of people that were living life with this, that were living these full, beautiful lives. It was hard to find. It wasn’t like I could go on social media and see a blind person out there in the world like I want it to be. I think now with the influx of Instagram and TikTok, and it’s gotten bigger and bigger even since I was in college, I find more of it, which is amazing.

But I just want, my main goal is I want anyone out there, with vision loss of any kind, to feel like they have a friend in me, and someone to look up to, look next to, look down on. Someone to be their beacon of hope and light. Not only that, but someone that will respond to them and answer them and get on the phone with them if they need. Anyone that’s experiencing the same thing, to talk to.

That’s why I started Brightside, my support group, is because I saw this need of, there was this gap. It was like there’s the Stargardt’s Disease Support Group on Facebook, but it’s so condensed, and there’s so many people, and I think it can feel a little bit daunting. When I was first diagnosed, I didn’t really know, what do I post? How do I get in touch with people? I needed a smaller avenue, and I needed positivity, and people to tell me that everything is going to be okay.

That was my main goal, is just to make sure that others know that you can live this amazing, full, rich, beautiful life, and you can do anything that anyone else can do, no matter what your limitations are.

My other little goals would be just to continue posting, and continue speaking on behalf of the visually impaired community. It’s interesting, because I have my experience, but I’ve also connected with so many other young men and women, and older, and even young men and women that have completely different experiences. They’re diagnosed at age 7; some are diagnosed at 77. That’s what makes the condition so crazy and so unique. But yeah, Stargardt’s disease is my superpower, and I believe that everyone else that has it, it can be theirs too if they let it.

Jillian Comstock:

I love that. I love that you turn it into, like you said, a beacon of hope, instead of seeing it as something that’s happening to you; it’s happening for you.

My next question. My Hero is all about recognizing those that have embraced life’s challenges and turned it into something powerful and hopeful for others. Can you share ways in which you have not let your own obstacles define you?

Eavan O’Neill:

I love that question. Yes. Like I said, when I was first diagnosed, which I think a lot of people do, I had an idea in my mind of what a blind person was. I had this stereotypical image of someone holding a white cane, or having a seeing eye dog, or wearing dark glasses in a brightly lit room. All those things that you think of when you think of blind, because as we grow up, we’re fed images, and pictures, and ideas of what blind people look like. The same goes for, I’m sure, people with hearing loss and other disabilities. But I know that with hearing loss, you don’t necessarily have to have a hearing aid or cochlear implant. Hearing loss can look different too. Just like blindness. You don’t have to have that cane, or a seeing eye dog. It’s such a spectrum.

I just decided that blindness is going to look exactly what it needed to look like for me. That I wasn’t going to let myself, now identifying as a blind woman, be any different than what Eavan O’Neill would be as a fully-sighted woman. I’m still going to do all the same things; I’m still going to act the same way. I’m still going to pursue the same career and strive for things that I think maybe could be so far out of my reach but still going to strive for them. Regardless, if I wanted to be a race car driver and I was diagnosed with this, I would still try to be a race car driver. If there’s a will, there’s a way.

I never want it to define me except for the ways that it made me a better version of myself, and a more open and understanding and kind version of myself. I think it has just made me a better version of who I am. I think I can now see the world and see people sort of in a different way. You never just never know what anyone’s going through or dealing with. It doesn’t matter what they look like, or how they act. There’s always a story behind each person that you see. I’m only going to let it continue to bring positivity into my life.

Jillian Comstock:

Absolutely. You hit it right on the head. When I came across your TikTok, I had no idea that you had Stargardt’s disease at all. I just was like, “Oh, this girl is running 10 miles. I can never do that. I wish I could.” Then I read the description, I was like, “Oh, not only is she running 10 miles, she has a vision impairment.” It’s just really inspiring. What would you tell your younger self knowing what you know now?

Eavan O’Neill:

I would tell my younger self, “Eavan, everything’s going to be okay. I know you feel really sad right now, and confused, and scared, and what is this, and what’s going on, but it’s only going to bring the best opportunities, people, and positivity, and silver linings into your life. It’s going to change your life, yes, drastically. There are going to be bad days. There are going to be days that you wish this was never happening, and that you feel like, why me? But I promise you, the good days are going to outweigh the bad days. Just keeping yourself, keep powering your life with kindness, fueling your life with kindness and openness. Don’t be afraid, because you’re going to live a full, beautiful life because of this, not because of the limitations it brings. Because of the positivity it brings.”

Jillian Comstock:

That’s beautiful. Thank you for your authenticity and vulnerability today. You’re truly a hero. Here at My Hero 360, we’re looking forward to seeing all the marathons you run in the future, and seeing the rest of your journey unfold. We value and appreciate the impact you’ve made on the world. Thank you.

Eavan O’Neill:

Thank you. Thank you so much, Jillian, for having me, and for asking the most beautiful and eloquent questions. I appreciate it so much, and I appreciate this opportunity more than anything. I hope I can come back. I want to come back and give more information.

Jillian Comstock:

Yeah, we would love to collaborate with you in other ways, for sure.

Eavan O’Neill:

I would love that.

Jillian Comstock:

Yeah. Thank you.

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Connect with Eavan O’Neill:

• Instagram: @eavanoneilll

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