Eavan O'Neill: Running for Stargardt Awareness

And today I have with me Evan O'Neill, who is a marathoner fundraiser and advocate for the blind and visually impaired community, and also a field team member with John G. Thank you for joining me today. Eavan O'Thank you so much for having me. I'm psyched to be here. Yeah. Well, I'm excited to have time to talk to you. You and I are graduates of Yarmouth High School, grew up in wonderful community. In fact, I'm pretty sure that your mom and I, we went to high school in the same general era. So I think there's lots of similarities. I'm so interested in the work that you've been doing recently as a result of something that you had absolutely no control over, which is a diagnosis that I think came into your life probably not entirely welcome. I'm just going to guess. And yet you've turned it around and you're doing good things with it. But talk to me a little bit about why you are doing the work you're doing now, and how do we get to this place? Eavan O'Well, that's a great question. So I can do a little bit of backstory in my diagnosis before going into sort of where it stands now and the role it plays in my life at this point. But I was, so when I was 21 years old, senior in college, my senior spring, I was diagnosed with Stargardt disease, which if you're not familiar with Stargardt disease, it's a form of inherited macular degeneration, juvenile macular degeneration. So basically your eyes are made up of rods and cones, your rods or your peripheral vision, your cones or your central vision and stargardt disease attacks the macula, which is the cones in your eyes. So your central vision starts to deteriorate over time. And currently there's no cure or treatment for the condition. So where I am, especially in Boston near MIT and Harvard, there's multiple clinical trials and lots of research going into a cure, but currently no cure or treatment. So long story short, I'm losing my eyesight over time with no cure, like I said. So senior spring of St. Lawrence, I was diagnosed and it was, came as a shock. I had struggled with my eyesight my entire life, and I remember bits and pieces of not being able to see and wondering why my glasses weren't working or B, my contacts working and what was happening and if I needed a stronger prescription. Eavan O'So being diagnosed with star disease made a lot of sense, but also no sense. At the same time, I had never heard anything like this. I didn't know diseases like this even existed, let alone that there be something that I could, could be this life altering and not have a remedy or a way to fix it. So immediately after being diagnosed, I sort of fell into a really dark place. My academics plummeted exponentially and I didn't know how to disclose the information to others, peers, family members, other residents of Yarmouth. And so the beginning of it was definitely dark and I felt super alone in it. And also it's very rare. So I should also say that it affects one in 10,000 people and finding, I didn't find a community around it right away. I always describe it as sort of jumping off a cliff. Eavan O'So when I was diagnosed, it was just my mom and I in the doctor's office, and they told us, and I was like, what do you mean I'm going blind? What do you mean there's no cure? This is, I'm 21 years old, I'm in college. This is the last thing I would ever expect. So I went home, COVID hit in March, 2020, as we all know, I went home from school and it ended up sort of being a blessing in disguise for me because I think being in the environment, the college environment at that time was just not suitable for what was happening with me, academics wise, socially, everything. So I went home and trying to find, I was trying to find something that would make me feel stronger again, make me feel more in control, make me feel grounded in myself and my body. I felt super out of control, and I had always been somewhat of an athlete. I played sports and that was my outlet growing up. But I never was a runner, never dreamed of running more than two miles. It was never in my, I actually at one point I remember saying, people who run marathons are crazy, and I would never do something like that. It's such a waste of time and it's not for me. Eavan O'But all that's to say, I went home, I started to run a little bit, just like a two mile loop around my house. And also, you can stop me at any point if I'm going off on a tangent because I am sort of telling a full story, but I can tell specific parts and whatever works best. No, you're doing great. Please do continue doing exactly what you're doing. Eavan O'Okay, that's great. So I went home, I would do this little two mile loop. I called it my mental health loop because obviously Covid was a little bit crazy. We weren't seeing anyone. So I would go in this little mental health loop, and I was also coping with the fact that I had been just diagnosed with Stargardt disease at this point. And one of the days I was doing a two mile loop. My neighbor, who at the time was furloughed from her job, she was home from New York City, caught me at the tail end of my run, was like, oh, I'm going to do four miles. Do you want to do two more with me? I was like, you're absolutely crazy. I would never do four miles. But she was like, why don't you try? And at that point, we were close, my neighbor and I were close, our moms were close, but we weren't nearly as close as we are now. Eavan O'And she had me go on the four mile run. We finished up. She said, all right, let's try and do same time tomorrow, because the run felt great. I was like, okay, I guess I could do four miles. And when you're talking with someone, when you have that partner with you, it goes by faster as a lot of us know. And so the next day we ran Four Mile Loop. And again, I was finishing up school, but I had one online class a day, so there's plenty of time to add in this running routine with Madison. Her name is Madison Hinz, she's in Abbey's grade, I should say that. And we continued to run every day and started to form a really unique relationship in that she was going through her own things, having been furloughed and had other things going on in her life. Eavan O'And I had this huge diagnosis and I was able to share with her things that I might not share with my sisters or my parents because it's too hard. And I think when you're moving your body in that way and you're having this physical, emotional, and mental connection with someone, it's so unique in that you're able to open up and express in a way that I think I wouldn't be if we didn't share that love of running and willingness to move our body and be outside and want to connect in that way. So she heard my story and she understood kind of where I was with my diagnosis, what level of accepting it I was, and how fearful I was of the future. And eventually our mileage increased. We were doing six, seven miles a day, and she was like, Evan, why don't we do a half marathon? Eavan O'And at this point, it was most half marathons and full marathons in the United States and around the world had been postponed or canceled. And she suggested we do our own DIY half marathon around the Yarmouth, Maine and make it a fundraiser and have it be my way of telling my main community, my St. Lawrence crew and everyone in between that I had been diagnosed with this very rare kind of crazy thing that it's really hard to explain to people. And so I agreed, and I was very fearful at first because the half marathon was crazy, but I knew that I wanted to tie my diagnosis to something positive. And running had been something really positive for, made me feel strong again, made me feel comfortable in my skin. I felt like I had some sense of control back that I had lost through my diagnosis. Eavan O'So I had done a little bit of research what foundations and organizations are doing for degenerative rental conditions, and I was in contact with a few folks over at the Foundation Fighting Blindness, and I really liked what they were doing. I really liked how they explained exactly where my money would go, how much would go to research, how much would go to education. And I chose a foundation fighting Blindness to fundraise for. And Madison and I ran our half marathon July 3rd, 2020, and we raised $20,000 and ran around Yarmouth. And it was the best still to this day, I think one of the absolute best days of my life, I did not know what to expect telling people that I was diagnosed with this. Eavan O'There can be some worry around how people will react and how they'll see you and how they'll see you differently from how they previously saw you. And that can be said for so many things, but I just knew, especially as being a young 21 year old girl at the time, woman at the time, I just didn't know what to expect. And it was really positive, completely altered everything for me. And from that point on, I was like, this is absolutely a silver lining. This happened for a reason and it has to become something bigger than me. And that was sort of the beginning of it all. I don't know if that was a very long-winded way about answering your short question, but that's sort of how it all began. Well, it's so interesting that you're talking about the importance of having that one person who cared that you felt like you could, I'm sure everybody else cared. I'm sure your mom cared and your family cared, but for you, you actually needed somebody who was just kind of adjacent to all the people you knew. Who cared? This person, Madison, who? Yeah, my daughter Abby. So I have three kids, for people who know, I live in Yarmouth, my oldest Campbell, and then Abby is the middle child. And then Sophie is youngest who also went to St. Lawrence, but similar, Abby, also an athlete and friends with Madison and Madison, wonderful human being. But I love the fact that what you're describing isn't like, this was my best friend and we went out and ran because we were best friends. You're like, oh, this is a person. And we actually became really close friends and having that connection, kind of that validation, like, alright, I am still existing in the world in a way that makes sense to other people. So what can I do with not only my relationship with this person, but the running piece? I mean, that's a lot of really kind of fortuitous stars aligning, I think. Eavan O'Yeah, yeah, absolutely. Absolutely. And I don't, I mean know, I wouldn't have done nearly half of what I have accomplished without Madison. So shout out to Exactly. She probably doesn't know that we're telling her story right now, but that's hoping she'll be all right with it. But Eavan O'Yes, no, she definitely will. She definitely will. I actually just saw her last weekend. We ran a marathon together, so she will be psyched. This is happening. Well, and I have to say that as somebody who also runs marathons, and I sometimes run two marathons if I'm really motivated every year, sometimes just one this year is going to be a one marathon. It is a completely, I don't want to use the word crazy, that's kind of a pejorative term I guess these days, but it's not completely normal. I mean, people who run marathons, you actually, you put a lot of time into training in Maine or in Boston, you're getting up or you're going out, and it's probably going to be dark part of the time, depending upon what time of year you run your marathon. Sometimes it's cold. It's also just really long. I mean, it's hours and hours of training every single week. So for you to say, oh, I'm going to turn this thing that has impacted my life into, I'm going to do something that's actually quite a bit of work. I love it because I'm somebody who relates to it, but not everybody would. Eavan O'Yeah, absolutely. And like I said, I never dreamed of really running a marathon or doing anything remotely close to that. So it's interesting. But again, back to that sense of control, the diagnosis made me feel, I mean, I have no control over. It's affecting me. I have no control over how fast it's declining. And so getting up every morning and running and having that consistent schedule, I think brought some sort of sense of stability back into my life and made me feel really strong and in control and honestly happy, which I think I was really sad for a while. Well, and I think that it's important not to gloss over the fact that at 21, I mean, I think everybody anticipates that as life goes on, that something will happen to their health, but most people when they're 21, that's not an assumption that they make. And to have something that really impacts your day-to-day living and to have so much uncertainty around it, I mean, that's a lot to handle. Eavan O'Yeah, definitely. And just like I said, I had no idea that this even existed, that this could even be a possibility for me. I remember saying to my mom in the doctor's office, like, oh, maybe it's just macular degeneration, which I had no idea what that even meant. And my mom was like, well, I hope not honey, but is just interesting. Like you said, you just never know, but it's not what you expect. So that's how you react to it that matters most, I think. So on a day-to-day basis, I mean you obviously went in because your eyes weren't functioning the way that they had before. Now you have a diagnosis and you're still fully functioning in the world on a day-to-day basis. How does this impact your ability to do the job that you do and to go out running? And what does this mean for you? What kind of accommodations do you have to accept? Eavan O'That's a great question. I honestly sometimes feel like I learn something new about it every day and learn something new about what I need and what would work best for me every day, accommodation wise, accessibility wise, et cetera. When I was first diagnosed, I was pushing all of that off. I didn't even want to think about it. I didn't want to Google it. I didn't want to know anything about it. I remember my teachers sort of discussing the option of having online books with me so that I could zoom in and I hated it. I didn't want to deal with any of it. And now I have mean it's taken four years, but I've been able to embrace that it's an asset to the workplace. And so in that regard, I have accessibility tools in my computer. I would say the four hardest things for me to see in no particular order. Eavan O'Or maybe we can do an order. People's faces are incredibly hard. So Stargardt disease, like I said, affects your central vision. So the details in the center of your vision are completely gone. And so the details of people's faces, recognizing who people are is incredibly hard. It's probably the hardest thing. And then computers, phones, books, street signs. So I'll go into that further because of running TVs, even the buttons on my oven, my microwave, our fridge, I have all accommodations for that. So those are all really difficult things to see. And a lot of the times I'm like, oh, I could see that last year and I can't see it this year. And that's when I kind of remember that or not remember, but I'm reminded that it's progressing. And so with all of these things I've learned to adapt, just so many of us do with things that are hard in our life for things that have happened to us without our control. Eavan O'And whether that's putting these dots on my microwave or oven that are red for stop green for start purple for popcorn, whatever that means, I do that. I have accessibility tools in my computer. I have special stickers in my computer so I can see the buttons. I usually tend to run with a bunny, but if I'm running alone, I just go on a route that I know is safe. I stay on the sidewalks, I use my other senses. So if I'm at a stoplight, I know I won't be able to see, or a crosswalk, I know I won't be able to see when it turns from stop to go. And so I rely on my hearing. Normally those crosswalks are supposed to say, walk, sign is on, and if not, I wait for someone else to come and see when they go. And I base it off that. Eavan O'So every day I'm sort of still learning and I know that's going to continue for the whole rest of my life, how to best be myself in the world with this condition. And yeah, I think honestly that's sometimes what keeps it interesting. I mean, imagine dating at 25 with being visually impaired and legally blind. I don't know what these men look like. I don't know how I'm going to find them at the restaurant or the bar, especially Dimm lighting. It's so interesting. And not to mention not only that, but it's also really good gauge of if this person's right for me. And so it's just the whole thing is super interesting. Eavan O'And yeah, I guess that's how I would answer that question, but I just make sure that people know. For example, I just got a little side hustle job at a workout studio, and the first thing I think of is how am I going to check people in? How am I going to be able to see the iPad? I'm definitely not going to able to see people's names, but in those moments, I just have to bring myself back down to equilibrium. I'll disclose that I have a disability, we'll find accommodations. That's why Zoom exists. That's why Apple and Dell and Mac, whatever, they all have accessibility tools on the computer. It's because people like me exist in this world and they still are going to live full rich, beautiful lives regardless of that, because there are ways to do. So another long-winded answer to your short question, but No, I think this is actually really important, and I think the fullness of your responses is so thoughtful. And I really appreciate this because I'm not sure that, I think most of us, we just have the perspective of where we're coming from. So we don't think to ourselves, well, what would it be like if I actually couldn't see somebody and I was dating and I couldn't use visual cues? There's a lot of communication that does occur visually, just for example. So it goes beyond just what does somebody look like and will I like them because they visually appeal to me. It is also when they're saying something with their voice, what are they saying with their face? And if you're saying that you have a hard time seeing faces, I mean, you really are also learning how to interpret communication in a different way. And so for people like me to understand that is really helpful because maybe I think about the way that you and I might communicate differently if I were having a regular long-term friendship with you, or maybe not. Maybe I think about the way I communicate with anybody, because you don't really know who's out in the world who may need different kind of communication tactics. So trying to be more universal in the way that we think about interacting with one another I think is really important. Eavan O'I absolutely agree. And it's interesting you say that because I, it's technically, you wouldn't look at me and know that I have Stargardt disease. You wouldn't look at me and know that I am losing my eyesight or that I'm legally blind. So navigating that piece of it too, this invisible illness or this invisible disabilities sort of aspect is super interesting because I think sometimes even my friends forget or tend to, if they're making a facial expression to me across the room, there's no chance I'm going to know what it is. And they'll be like, Evan, and I'm like, I can't see you. And they're like, oh, right, I'm sorry, blah, blah, blah. And so it's funny because it's not like I have to remind people, but sometimes I have to be like nudge, nudge, wink, wink. I need you to read the menu to me. I need you to tell me when the crosswalk is changing. If it doesn't speak to me, I need you to do things that I wouldn't have ever thought I would have to do. So it's just, it's interesting. But again, like I said, it's all a learning curve. And at the end of the day, sometimes I truly think there are good days and bad days, obviously. But at the end of the day, sometimes it makes life even just more interesting and more funny and entertaining because my friends and I can laugh about it together and we can cry about it together in my family as well. I'm glad that you have a sense of humor about it, and I think that it seems like you're navigating it in a way that is really appropriate to you and your situation. And also, I'm glad that you say that you can cry about it together because I think about the fact that you're my daughter's age, for example. And I mean as a mom and knowing your mom and knowing your family, I know that that's a processing that occurs for kind of everybody, right? So if you say, I, Evan can cry with the people that I'm with, my family, my friends, I mean, that's a really supportive thing that you're all offering one another is this ability to say, yeah, this actually does impact all of us. And it doesn't necessarily always feel great, Eavan O'I don't know. It's an interesting place of vulnerability that you end up finding yourself in, I would imagine. Eavan O'Absolutely. And when I was first diagnosed, like I said, it was jumping off a cliff. I had no idea what this meant for me or my family or my future, anything like that. And I remember feeling super isolated and really alone, and my mom and I on the drive home, and in the weeks, months, years now after my diagnosis, we always said to every doctor that I've met with, if any other family is going through this, please send them our way. Or you have anyone that you want that needs someone to talk to, or whether it's starer disease or there's other retinal conditions of retinitis pigmentosa, which is like when you lose your peripheral vision and you keep some of your central. So anything remotely close to that, I wanted to be someone that someone else could talk to. And that's where this whole, that's what the entire running thing has sort of spiraled into is not only attaching something positive to my condition, what running has done for me, but also being able to be vulnerable, like you said, on social media and be vulnerable with my friends and family and be vulnerable in situations like this, speaking with you on this podcast, because when I was first diagnosed, that girl would never have done any of this. Eavan O'She wouldn't dream of telling people that she's dealing with this A, because she probably wouldn't want the limelight, but also B, because it was somewhat, it was terrifying and embarrassing and weird. And I didn't know that it could be anything other than those things until I was vulnerable. I remember first posting on social media about it. I was like, I don't know what people are going to think of me after this. And I have to continue Lisa telling myself that, well, it doesn't matter because the whole point of this is that others can see that I'm struggling with this too. But you can still live a full rich, like I said, beautiful life regardless of this. You can still have, sorry, there's a car beeping outside. I dunno if you can hear that. Eavan O'You can still have an amazing experience in life with this. And I, the messages from parents and young adults my age and younger people of all different ages and backgrounds that messaged me that either asking questions about stargardt disease or asking who my doctors are, what my doctors are saying, asking about how our family has dealt with X, Y, and Z, asking, I have these special TV glasses that have this. They're so horrendous looking, but they're hilarious and they have this thing on the side, and you can alter how close the TV is to your eyes. It's sort of like a giant magnifying glass. But the amount of people that have messaged me about those asking where I got them that have either sarrow disease or something similar or something in that same vein, matters to me so much more than anything else. And that never would've come if I wasn't open with this or vulnerable with this online. I think that's why I continue to run. That's why I continue to openly discuss my blindness, and that's why I'm not afraid anymore to I guess be myself in that way. But it's the vulnerability piece I think is so important. And that's always been important to me. But this is just a completely different version of it, I think. Well, and I think about what you in being vulnerable, but also in sharing your experience, I think about what benefit other people who have done something similar have brought to the type of accommodations and creating of the glasses. I mean, if people aren't willing to come forward and say, yeah, I'm not experiencing life the way that everybody else is and I need a little assistance, then we don't build glasses and we don't have Zoom and Apple and Google working on adaptability measures. I mean, I think it would be great if we got to a place where universal design meant that everybody has access to what they need online and otherwise. But the way that that happens is by people coming forward like you and others who have done so beforehand and say, alright, so let me tell you a few things that I am really challenged by and how could you help me with this? So we of really need people like you to do that. Eavan O'Yes. No, I agree. Absolutely. I think I would rather go through life being vulnerable and open like that. And whether it's helping one person feel more comfortable in their own skin or a bunch of people, I would rather go through life like that than any other way. And I know that there are people that have started a disease that don't want anyone to know, and it's not a part of their life that they want to share. And that's completely respectable too. I think whatever you want to do with your journey is okay and fine. And it's just one of those things I think for me that I know when I was first diagnosed, my mom said, this will become a superpower. And I knew I had to harness that in some way, whatever it is. And even if it's, I have no following, I am so glad that it has become a superpower for me in that way. And sort of going off on a tangent now, but yeah. Yeah, exactly. Well, and I want to reiterate something you just said, which is that there is no expectation, I think for me, to you. I don't expect you to be vulnerable. I would never expect anybody with Stargardt's disease or any sort of other issues that they want to process and experience in the own way. I would never want them to do anything that's outside of their comfort zone. Because I think that the fact that you're choosing to show up and be vulnerable and be courageous, I mean, that requires a certain amount of energy and it requires a decision that you've made about your own life and other people who have other issues. I mean, that's completely within the realm of their own decision making and back to their own control about their own lives. So I think you are on a spectrum. I'm grateful that you've chosen this path, but equally I value the people who have made their own decisions to do it a different way because we all get to decide what to do with our bodies at least. Eavan O'At least that's what I choose to believe in my political beliefs. So Eavan O'I agree. I agree completely. Definitely. So one thing I'm interested in this field team member for John G because I know John G is a running organization company. What has that meant for you? Eavan O'So after I ran the half marathon, I loved the way I felt and I knew I wanted to do a full, I mean directly after, probably not, but a few months after I decided I think I would like to do a full, so the following year I did my first marathon, which is the main marathon in, I don't know if you've done that one, but it's in Portland and it's really beautiful. I did it with Madison. And so that had first one under my belt and it went really well and I loved it. So I started thinking about the next one, what that might look like. And I ended up moving to Boston that following summer, and I live in Boston now and work in Boston. And if you know Boston, then the Boston Marathon, and if you know the Boston Marathon, it's one of the most special, unique, oldest, most exciting marathons in the world. Eavan O'And I decided I had been three years since I did my half marathon at this point, and three years since I did a full round of fundraising. And I decided, okay, I'm going to apply for the Boston Marathon through Mass nine year, because I should also not continue without mentioning that I was diagnosed at Main Eye Center with cone dystrophy, which means that technically it's like an umbrella term for different types of retinal conditions you have that have to do with your cones, your central vision. But Main Eye Center doesn't have these machines called Electroretinogram that look looked directly at your retina and would be able to tell if you have Stargardt disease. And so after being diagnosed Eavan O'At Main Eye Center with colon dystrophy, my family and I had traveled down to Massachusetts Eye and Ear a couple months later, and it was there that I was officially diagnosed with Stargardt Disease. And my experience at Massachusetts Eye and Ear was amazing. I walked in there with my family, again, a terrified 21 year old woman, and they sat me down. It was my doctor, Dr. Feld, Dr. Rachel Feld and a resident at the time. And they said, listen, we looked at your charts. We know you have star art disease, we have race car drivers that have star art disease. We have artists that have star art disease. We have educators, we have entrepreneurs. This is not going to ruin your life. This is not going to make you not become what you want to become. And the bedside manner was just, it was a world of difference. And my family and I left that experience with Dr. Huck felt feeling much more positive about my future. And she said to me, you're in my hands now and I'm following the most promising clinical trials in the nation. And if there's a clinical trial that you're eligible, I will tell you. And so I felt just better. Eavan O'I felt safer. And so all that's to say is that I knew I wanted to fundraise for Dr. Huckel when it came to the Boston Marathon if I was going to be running with Mass Senior. And so that's happened. It was really exciting. I applied, I was lucky and lucky enough to be accepted onto this team of runners, and they asked what area I would like to fundraise for and what department. And Dr. Huckel has a discretionary fund, which basically means that she can use that money for whatever area of research she thinks is most important. And so I fundraised for her discretionary fund in the winter of 2022 into the spring of 2023, and I ran the Boston Marathon in the spring of 2023 and before running it. So again, the story is sort of all over the place sometimes. But after I was diagnosed with Stargardt disease, I moved to Montana sort of on a whim in the fall of 2020. Eavan O'So about four months after being diagnosed, and I knew I wanted to get away from the Northeast, I knew I wanted to get away from everything that happened that spring. And I also wanted a chance to see the mountains and ski and be out there before maybe I wouldn't be able to do that. So I moved to Montana and another Yarmouth resident, Sam Ruda messaged me when I moved out there. He went to school in Bozeman and he said, I saw your story because this was after I had done the half marathon, and I think it would make a really cool film. And Sam had just quit his job at Harley Davidson or left his job at Harley Davidson and went full-time, freelance videography and photography. So he sent me a little message, I saw your story. I think this would make a really cool film. Eavan O'I would love to chat more about it. So it's sup