Eavan O'Neill started running at 21 years old when she was diagnosed with Stargardt Disease, a rare degenerative disorder that leads to visual impairment and blindness. Although there is currently no cure and she can't slow the progression of her symptoms, Eavan leans into running as an incredible source of joy, and a powerful way to connect with the running community.
Eavan O'Neill started running at 21 years old when she was diagnosed with Stargardt Disease, a rare degenerative disorder that leads to visual impairment and blindness. Although there is currently no cure and she can't slow the progression of her symptoms, Eavan leans into running as an incredible source of joy, and a powerful way to connect with the running community.
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Eavan O'Neill:
That's how I see the world now is through running and races. Even though I'm not able to see my surroundings as perfectly as I might be able to if I had 2020 vision, I feel like I'm seeing with, this is so cliche, but my heart. I'm running, my body's pumping, it's working, and I don't really need my eyes for that. I have everything else.
Shelby Stanger:
Eavan O'Neill didn't start running until 2020 when she was 21 years old. It was the same year she was diagnosed with Stargardt Disease, a rare degenerative disorder that leads to visual impairment and blindness. Eavan describes her vision as a cake that someone has punched a hole in the middle of: the center of her field of vision is empty, while her peripheral vision is clearer. There's no cure for Stargardt disease and there's nothing Eavan can do to slow the progression of her symptoms. To help cope with her diagnosis, Eavan took up running. She started with just a few miles, and it quickly became an incredible lifeline and source of joy. Soon, Eavan had multiple races under her belt, and earlier in 2023, she ran one of the most famous marathons in the world.
I'm Shelby Stanger, and this is Wild Ideas Worth Living, an REI Co-op Studios production.
Eavan O'Neill, welcome to Wild Ideas Worth Living.
Eavan O'Neill:
Thank you, Shelby. I'm psyched to be here.
Shelby Stanger:
I'm excited to talk to you. I mean, I think most of us take for granted the fact that we can see, hear, feel, taste, touch. And in 2020 you were diagnosed with Stargardt Disease, which I understand from my limited knowledge that it means you're losing your vision, but you're still running, which is awesome.
Eavan O'Neill:
Yes.
Shelby Stanger:
Talk to me a little bit about first what happened.
Eavan O'Neill:
Yeah, sure. I had had poor vision my entire life. I was a very athletic, active child. And so I remember in eighth grade not being able to see the lacrosse ball very well through the cages that we were required to wear. And my coach pulling my parents aside saying, "I think Eavan might need glasses. She's not catching the ball. She's not seeing as well as the other girls." And then it started to get worse and worse with academics in high school. I started not to be able to see the board in class and I thought, what do you do when you can't see? You get glasses or contacts. So I got glasses freshman year of college. But unbeknownst to me those glasses weren't really doing anything. And I remember complaining to my parents, I'm still not seeing the board as well as I think I should be. And it was really sophomore, junior year of college, I was like, this is not working. I can't see the board at all. I can't barely see the books I'm reading. Something is not right.
And so I finally went to the optometrist again and she said, "Something's not right here. Your eyes keep changing. We can't really tell what is happening, but you need to go to Maine Eye Center," because originally from Maine. So my optometrist is in my hometown in southern Maine. And I remember feeling like it was more serious than not because they had me going to Maine Eye Center the next morning at eight in the morning, and I was there all day with my mom, and I was doing crazy tests that I had never done before. And it was December of 2019 that I was diagnosed with cone dystrophy. And lucky enough, my cousin happens to work at Massachusetts Eye and Ear, and I was able to get in to see Dr. Rachel Huckfeldt a month after being at Maine Eye Center, and I was officially diagnosed with Stargardt Disease a week before heading back to college for my senior spring.
Shelby Stanger:
Thank you for telling me that. So you were diagnosed your senior year in 2020?
Eavan O'Neill:
Yeah, 2020.
Shelby Stanger:
That must have been like... I mean, today, that would be shocking. As is a senior in college, I mean, your whole life is ahead of you. That must must've been challenging.
Eavan O'Neill:
Yeah, it was definitely challenging. I didn't understand how serious I think it actually all was until going back to school and my academics plummeting exponentially and realizing this is actually happening to me, like, oh my God, I am losing my vision and there's no cure and this is really scary. And I think 99.9% of the reason I am so open about my journey with Stargardt Disease is because when I was diagnosed, it was so isolating to the point that I didn't know what to do or who to turn to. It felt like jumping off a cliff.
Shelby Stanger:
Just curious. I've taught someone who's blind to surf. We've interviewed someone who's a blind Olympian, but they all have different amounts of vision. So what is that for you right now? When you go running, what can you see?
Eavan O'Neill:
The hardest things for me to see, running and not running, are people's faces. That's probably the hardest. I don't really truly know what anyone looks like until they're this close to me. I don't know what you look like at all right now. I really only see your hair.
Shelby Stanger:
Well, my hair is really not brushed, so that's okay.
Eavan O'Neill:
Your hair is beautiful.
Shelby Stanger:
Probably great.
Eavan O'Neill:
Your hair is beautiful. Phones, TVs, computers, faces, street signs are impossible. The oven, the microwave, really anything that is small and detailed up close or far away because that centered part of my vision is just... I describe it to people, it's like an abyss. So it's not black, it's not really gray or anything, it disappears. It's just not there. It's really hard to describe. But when I'm running, I usually try to keep my head down and watch my feet because if I look straight ahead, it's completely blurry. So if I want to take in my surroundings, I usually stop and then I can adjust, look around, take it in, because landscapes, because I'm using my peripheral vision, they're a lot easier to see than a stop sign or a streetlight would be. A lot of times while I'm running, I rely on my hearing if I'm running alone, but it's just taking the extra steps to be cautious and using my other senses when I can.
Shelby Stanger:
Eavan received her diagnosis in 2020, and at the time, she was going to school at St. Lawrence University. When the world shut down due to COVID, she went back home to Maine where she continued taking classes remotely. It was a difficult time for Eavan, but she turned back to sports to help her cope.
Eavan O'Neill:
COVID hit and I ended up going home from school early and I started running to kill time, but also get out of my own head, get out of my house. And at that time, it was like two, three miles. That was max what I would do. I would do this loop around my house in Maine. And I was on a run once, and my neighbor is an avid marathon runner. She had probably run 10 or so marathons at that point. And she was out on her four or five mile loop, something like that. And we weren't really that close at the time, but she was like, "Hey, do you want to do the couple more miles with me?" And I really didn't want to, but it was one of those awkward moments where I was like, okay, I feel obligated in some way. And thank god I did because I went with her, proved to myself that I could go that far. And then she showed up at my driveway the next day. I was like, oh god, I can't shake this girl. No, I'm just kidding. But I was like, okay.
Shelby Stanger:
I like this neighbor.
Eavan O'Neill:
Yeah, she's great. And I can't tell my story without mentioning her because she became such a huge part of my life. She actually... I'm running a marathon with her in two weeks, but we started doing it every day and I was like, oh, I actually can go this far and my body is capable of doing so. And it was really therapeutic because I was really depressed and I got to share with her what's happening with my eyesight, how I feel on the inside, while also having this physical outlet. When you're a runner, you know. There's something so special about running with someone else and sharing in that physical, mental, emotional experience and you just connect on a different level, I think.
So I think, at that point, I paired this physical outlet of running with, oh my God, this is helping me. I feel better about Stargardt Disease. I feel better about myself. I feel stronger. Because when you're diagnosed with something that doesn't have a cure, there's a really intense shift and lack of control, I think. And I had to find some sense of control back in my life because there's nothing I can do to help this. There's not a pill I could take, a surgery I could have, anything of the kind. And so I just felt like running gave me that sense of control back. It made me feel strong in my body. It reminded me that all my other senses are still working and they deserve love too. My ears can listen to Madison chat as we run and the ocean and the wind, and my body feels the pavement under my feet or the trail. I smell the different seasons. It changed everything for me.
So Madison convinced me to do a half-marathon. And at that point, it was the summer of 2020, all the races were either postponed or canceled because of COVID. So she said, "Let's do a DIY half-marathon and we will make it your way of telling your world that you have Stargardt Disease," because it was really hard to tell people. I didn't know how to describe it, and it felt super like I was dropping a bomb on people, and it was hard for me because it reminded me that I was going through it. And so Madison was like, "Running is so positive for you. It's becoming this way for you to feel strong again. Why don't we pair it with you telling people that you have Stargardt Disease?"
And we decided to turn it into a fundraiser. So I posted online, I told everyone in my life that I was doing this. I was diagnosed with this condition and we're going to do a fundraiser. And at that point I chose the foundation Fighting Blindness as the nonprofit of choice. And so on July 3rd, 2020, we ran our first half-marathon and we raised $20,000 for the foundation. And I told everyone what was happening. And that day it was one of the best days of my life. And that point, I feel like everything turned for me with the diagnosis.
Shelby Stanger:
Running long distances helped Eavan overcome some of the emotional challenges that came with her diagnosis. In the moments when she feels scared or frustrated, running makes her feel strong, capable, and empowered. After that first half-marathon, Eavan was hooked on running and she was ready to take on an even bigger physical feat. She trained consistently with her neighbor Madison, and eventually ran the main marathon in October of 2021. When we come back, Eavan talks about the next big marathon she took on, Boston.
A few years ago, Eavan O'Neill found running as a way to cope with her Stargardt Disease diagnosis. Stargardt Disease is a rare hereditary disorder. Only 30,000 people in the US have it. Because it's so uncommon, the research is limited and it can be hard to get an accurate diagnosis. Eavan spent hours in doctor's offices and clinics as they tried to figure out what was going on with her vision. Luckily for Eavan, she was introduced to Dr. Rachel Huckfeldt at Massachusetts Eye and Ear, which Eavan calls Mass Eye and Ear.
Eavan O'Neill:
At Maine Eye Center, they weren't able to officially diagnose me. And they came in and they were like, "You are going blind. There's no cure. Have a great day." And yeah, it is what it is, but I was 21 and I was freaking terrified. And my parents were also terrified because they're like, "We gave this to you." I also have three sisters. I'm the second oldest of four girls, and they were all terrified too. They're like, "Do we have it?" My parents and I went to Mass Eye Ear and Dr. Huckfeldt sat us down. She was with a resident at the time, and they both were like, "We looked at your charts. We know you have Stargardt Disease. We have race car drivers that have this. We have horseback riders that have this. We have professional athletes. You're going to be totally fine. You will have a full beautiful life no matter what, and we are going to do everything we can to try and find a cure." And it was just like... I mean, I could literally cry talking about it. People come from all over the world to see her for a reason.
Shelby Stanger:
In 2022, Eavan applied to run the Boston Marathon. There are a few ways to get into this famous race. You can qualify by achieving a certain time in another qualifying race or you can apply through the charity program. Runners who go this route use their run as a way to raise money for a cause of their choosing. Eavan knew that if she was accepted, she would use the opportunity to support the amazing work that Dr. Huckfeldt is doing. Ultimately, she ended up running Boston and raising over $17,000 for Massachusetts Eye and Ear.
So you ran Boston this past spring. What was it like?
Eavan O'Neill:
I mean, Boston was just uniquely special because of the fundraising aspect too. And I live in Boston, so I think you really feel that strong Boston strong feeling, especially it was the 10th anniversary of the bombings. And you just feel like that tried and true feeling, I think, of being a part of the city. Even if you're not from here, I think you feel it. But I think mile 13 of Boston, the halfway point in Wellesley sticks out to me because that was the first point of the race that I saw my family, and Madison was there, my neighbor and best friend who kickstarted this whole thing for me, and I just felt it. You just feel the most whole you could ever feel like, oh my God, all my hard work over the past four or five months is paying off. I raised the money. I'm on mile 13 of the Boston Marathon and it's like a drug. I think it's like you're on your highest cloud nine. And having experienced one of my lowest points after being diagnosed with that, to go from that to this was like, there's nothing like it.
Shelby Stanger:
So were there ever parts of the marathon where you were like, okay, this is getting really hard?
Eavan O'Neill:
Yeah, definitely. My AirPods died at mile 20 and that's when you hit Heartbreak Hill. You're going uphill for three more miles. We had a coach and he told us to treat mile 20 like the halfway point of the marathon, which I think could be said for a lot of marathons, but especially Boston, just because right when you hit mile 20, you do hit those hills. And he was definitely right because you're on this high and then mile 20, AirPods died, it was raining, uphill. I was like, how do I have six more miles? I was like, oh God. I was like, there's no way.
Shelby Stanger:
So what did you say to yourself?
Eavan O'Neill:
You made it this far. You have to keep pushing. I thought to myself, and this is what I think to myself a lot, how lucky am I to be able to move like this? And although there are other parts of my body that might not be working as well as they should, my arms and legs do. So for that, I'm really grateful. And that definitely came through in my 20.
Shelby Stanger:
Eavan told me that the progression of her disease comes in waves. Her vision will be the same for a while, then it'll get worse, then plateau again. Every time it gets worse, she gets scared and depressed. She calls these days bad blind girl days. And when they come around, it's extra important that she get outside for a run. Still, she stays optimistic. Both running and her diagnosis have taught Eavan a lot. She's learned to speak up for herself, to push herself, and to be grateful for the things she can do.
What are some of the things you've learned about yourself and other people in dealing with this thing that is a little invisible?
Eavan O'Neill:
That's a great question, and I appreciate you asking that too because it is, it's an invisible illness. You meet me and you wouldn't necessarily know that I have this. I mean, I try to look people in the eye when I meet them, but I have no idea where their eyes are. I can't see their face at all. It's one of those things, it's like it's really, really hard, but it also can be really funny and light. I mean, Shelby, think about dating. I'm 25 years old.
Shelby Stanger:
I was just thinking about that.
Eavan O'Neill:
I know. I'm 25. I live in a really big city with a lot of young people. Dating is hilarious. If I'm going on a blind date, this person, unless they follow me on social or whoever's setting them up with me had told them, they have no idea. So the amount of times people have been at restaurants like, "Over here," because I will not know what they look like. Even from their picture, if I stare at for an hour before meeting them, I still am not going to recognize them in person. So it's like you have that side of it, but then you also have, and that's the funny side, but then you also have this side of how many men have been weeded out of my life because of the way they react to this. So it's, like I said, really hard, but really just hilarious.
And I feel like you can't take yourself too seriously. No one can. But also, and I always tell people this too, it's a really great way for me to know who's going to be there for me through thick and thin, because having a blind partner is going to take someone really special and someone really sparkly. So my person will just be extra special.
And aside from the dating thing too, telling new friends is also really hard. I moved out west after I graduated and after I was diagnosed, partly because just I wanted to escape the northeast and everything that had happened to me in the last few months, but the other part's because like, oh, I want to see a lot of things if this is happening to me before I might not be able to see them anymore. So I met a lot of new people, and it's so funny telling people about this. It's just like, they're like, "What? What is this? What do you have? You would never be able to tell, Eavan." And I'm like, "I know." It's a blessing and a curse. But also I can't read people's facial expressions at all. So I rely a lot on my hearing, obviously. And at the end of the day, there's not much I can do other than be like, "I have no idea what your face looks like right now." I say that to my friends all the time.
And then, if it's dating, it's hilarious because there'll be like... One guy I remember he stuck his tongue out at me and I didn't see it. He kept doing it and he's like, "Why aren't you not reacting to this?" I'm like, "Little does he know?" I'm like, "Oh, what were you doing?"
Shelby Stanger:
That's so annoying.
Eavan O'Neill:
It's hilarious, though. But yeah, with my friends who know about it, I'm just like, "Dude, I can't see your face at all right now. I need you to be... I don't know how you don't know that at this point. I cannot see you."
And my friends... It is also hard for my parents, my friends, other people in my life that don't have this to know what I can and can't see because, like I said, it's a spectrum and I think sometimes they forget. It's easy to forget. We'll be at a restaurant or at a sandwich shop, menu's up on the top. I cannot see that at all. So my friends will either read it to me or I'll take a picture with my phone and zoom in really closely, but sometimes they'll be like, "Oh my God, I totally forgot. Do you want me to read it to you?" that kind of thing because it's invisible. But I think some of the biggest lessons have been you never know what anyone's going through, no matter what they look like, no matter how they act, and you have to be really kind. Kindness goes such a long way. Not that the Eavan before the diagnosis wasn't kind. I think just my eyes literally and figuratively opened to the world, and I see it in a softer way now.
Shelby Stanger:
When she was diagnosed with Stargardt Disease, Eavan felt very isolated. She didn't personally know anyone who was blind, and she certainly hadn't heard of this illness before. That experience has fueled her to share her story so that other people dealing with invisible struggles know that they're not alone.
Eavan O'Neill, thank you so much for coming on the show and sharing your story. You are truly one of the kindest people we've ever interviewed. You can follow Eavan on Instagram @eavanoneilll with three Ls. That's E-A-V-A-N-O-N-E-I-L-L-L. Eavan is also a member of the Janji Field team, and she made a beautiful short film with them called Acuity. You can watch it on her Instagram profile or on YouTube.
Wild Ideas Worth Living is part of the REI Podcast Network. It's hosted by me, Shelby Stanger, produced by Annie Fassler, Sylvia Thomas, and Sam Peers Nitzberg of Puddle Creative. And our senior producer is Jenny Barber. Our executive producers are Paolo Mottola and Joe Crosby. As always, we love it when you follow the show, take time to rate it and write a review wherever you listen. And remember, some of the best adventures happen when you follow your wildest ideas.