Eavan O'Neill: Running for Stargardt Awareness

Lisa Belisle: Hello, I am Dr. Lisa Belisle and you are listening to or watching Radio Maine. Today I have with me Eavan O'Neill, who is a marathoner, fundraiser, and advocate for the blind and visually impaired community, and also a field team member with Janji. Thank you for joining me today.

Eavan O'Neill: Thank you so much for having me. I'm psyched to be here.

Lisa Belisle: I'm excited to have time to talk to you. You and I are graduates of Yarmouth High School, grew up in a wonderful community. In fact, I'm pretty sure that your mom and I 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. 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'Neill: That's a great question. I can do a little bit of backstory on my diagnosis before going into where it stands now and the role it plays in my life at this point. When I was 21 years old, a senior in college, my senior spring, I was diagnosed with Stargardt disease. If you're not familiar with Stargardt disease, it's a form of inherited macular degeneration, juvenile macular degeneration. Your eyes are made up of rods and cones. Your rods are your peripheral vision, your cones are 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. Currently there's no cure or treatment for the condition. 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.

Senior spring at St. Lawrence, I was diagnosed, and it came as a shock. I had struggled with my eyesight my entire life. I remember bits and pieces of not being able to see and wondering why my glasses weren't working or my contacts weren't working, and what was happening, and if I needed a stronger prescription. So being diagnosed with Stargardt 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 could be something that life altering with no remedy or way to fix it. 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. The beginning of it was definitely dark, and I felt super alone in it. It's also very rare. It affects one in 10,000 people, and I didn't find a community around it right away. I always describe it as sort of jumping off a cliff.

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? I'm 21 years old, I'm in college. This is the last thing I would ever expect. COVID hit in March 2020, as we all know, so I went home from school, and it ended up being a blessing in disguise for me, because the college environment at that time was just not suitable for what was happening with me, academics wise, socially, everything. So I went home, 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. 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. 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.

But all that's to say, I went home and started to run a little bit, just a two mile loop around my house. You can stop me at any point if I'm going off on a tangent, because I am sort of telling a full story.

Lisa Belisle: No, you're doing great. Please do continue doing exactly what you're doing.

Eavan O'Neill: Okay, that's great. So 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 on this little mental health loop, and I was also coping with the fact that I had just been diagnosed with Stargardt disease. One of the days I was doing a two mile loop, my neighbor, who at the time was furloughed from her job and home from New York City, caught me at the tail end of my run and 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? At that point, my neighbor and I were close, our moms were close, but we weren't nearly as close as we are now.

She had me go on the four mile run. We finished up, and she said, all right, let's try and do the same time tomorrow, because the run felt great. I was like, okay, I guess I could do four miles. When you're talking with someone, when you have that partner with you, it goes by faster, as a lot of us know. The next day we ran the four mile loop. I was finishing up school, but I had one online class a day, so there was 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. 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.

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. 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 wouldn't be if we didn't share that love of running and willingness to move our body and be outside and connect in that way. She heard my story and she understood where I was with my diagnosis, what level of accepting it I was at, and how fearful I was of the future. Eventually our mileage increased. We were doing six, seven miles a day, and she was like, Eavan, why don't we do a half marathon?

At this point, most half marathons and full marathons in the United States and around the world had been postponed or canceled. She suggested we do our own DIY half marathon around Yarmouth, Maine, and make it a fundraiser, and have it be my way of telling my Maine community, my St. Lawrence crew, and everyone in between, that I had been diagnosed with this very rare kind of crazy thing that's really hard to explain to people. So I agreed. 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. Running had been something really positive for me, 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.

I had done a little bit of research on what foundations and organizations are doing for degenerative retinal conditions, and I was in contact with a few folks over at the Foundation Fighting Blindness. 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. So I chose the Foundation Fighting Blindness to fundraise for. Madison and I ran our half marathon July 3rd, 2020, and we raised $20,000 and ran around Yarmouth. Still to this day, I think it was one of the absolute best days of my life. I did not know what to expect telling people that I was diagnosed with this.

There can be some worry around how people will react and how they'll see you differently from how they previously saw you. That can be said for so many things, but especially as a young 21 year old woman at the time, I just didn't know what to expect. It was really positive. It completely altered everything for me. 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. That was sort of the beginning of it all. I don't know if that was a very long-winded way of answering your short question, but that's sort of how it all began.

Lisa Belisle: It's so interesting that you're talking about the importance of having that one person who cared, that you felt like you could open up to. 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. This person, Madison, who is friends with my daughter Abby. I have three kids, for people who know I live in Yarmouth. My oldest is Campbell, and then Abby is the middle child, and then Sophie is the youngest, who also went to St. Lawrence. Abby is also an athlete and friends with Madison. Madison is a wonderful human being. 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, this is a person, and we actually became really close friends, and having that connection, that validation, like, all right, I am still existing in the world in a way that makes sense to other people. So what can I do, not only with my relationship with this person, but the running piece? That's a lot of really fortuitous stars aligning, I think.

Eavan O'Neill: Yeah, absolutely. I wouldn't have done nearly half of what I have accomplished without Madison. So shout out to Madison.

Lisa Belisle: Exactly. She probably doesn't know that we're telling her story right now, but we're hoping she'll be all right with it.

Eavan O'Neill: Yes, she definitely will. I actually just saw her last weekend. We ran a marathon together, so she will be psyched this is happening.

Lisa Belisle: 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 completely, I don't want to use the word crazy, that's kind of a pejorative term these days, but it's not completely normal. People who run marathons, 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. It's hours and hours of training every single week. For you to say, I'm going to turn this thing that has impacted my life into 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'Neill: Yeah, absolutely. Like I said, I never dreamed of really running a marathon or doing anything remotely close to that. But again, back to that sense of control, I have no control over the diagnosis affecting me. I have no control over how fast it's declining. So getting up every morning and running and having that consistent schedule 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 needed, because I was really sad for a while.

Lisa Belisle: I think it's important not to gloss over the fact that at 21, everybody anticipates that as life goes on, something will happen to their health, but most people when they're 21, that's not an assumption that they make. To have something that really impacts your day-to-day living, and to have so much uncertainty around it, that's a lot to handle.

Eavan O'Neill: Yeah, definitely. 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, oh, maybe it's just macular degeneration, which I had no idea what that even meant. My mom was like, well, I hope not honey. It's interesting. Like you said, you just never know, but it's not what you expect. So how you react to it is what matters most, I think.

Lisa Belisle: On a day-to-day basis, 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? What does this mean for you? What kind of accommodations do you have to accept?

Eavan O'Neill: 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 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. Now, it's taken four years, but I've been able to embrace that it's an asset to the workplace. So I have accessibility tools in my computer. I would say the four hardest things for me to see, in no particular order, or maybe we can do an order.

People's faces are incredibly hard. Stargardt disease, like I said, affects your central vision, so the details in the center of your vision are completely gone. 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, TVs, even the buttons on my oven, my microwave, our fridge. I have accommodations for all of that. Those are all really difficult things to see. A lot of the times I'm like, oh, I could see that last year and I can't see it this year. That's when I'm reminded that it's progressing. With all of these things I've learned to adapt, just like so many of us do with things that are hard in our life, things that have happened to us without our control.

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 buddy, 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 or a crosswalk, I know I won't be able to see when it turns from stop to go. 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.

Every day I'm sort of still learning, and I know that's going to continue for the rest of my life, how to best be myself in the world with this condition. Honestly, that's sometimes what keeps it interesting. 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 in dim lighting. It's so interesting. And not only that, but it's also a really good gauge of if this person's right for me. So the whole thing is super interesting.

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 be 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.

Lisa Belisle: No, I think this is actually really important, and the fullness of your responses is so thoughtful. I really appreciate this, because most of us 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. 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? If you're saying that you have a hard time seeing faces, you really are also learning how to interpret communication in a different way. 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 I think about the way I communicate with anybody, because you don't really know who's out in the world who may need a 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'Neill: I absolutely agree. It's interesting you say that, because 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 disability aspect, is super interesting, because I think sometimes even my friends forget. If they're making a facial expression to me across the room, there's no chance I'm going to know what it is. They'll be like, Eavan, and I'm like, I can't see you. And they're like, oh, right, I'm sorry. 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 interesting. But again, like I said, it's all a learning curve. At the end of the day, sometimes I truly think there are good days and bad days, obviously, but sometimes it makes life even 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.

Lisa Belisle: I'm glad that you have a sense of humor about it, and it seems like you're navigating it in a way that is really appropriate to you and your situation. 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. As a mom, and knowing your mom and knowing your family, I know that that's a processing that occurs for kind of everybody. So if you say, I, Eavan, can cry with the people that I'm with, my family, my friends, that's a really supportive thing that you're all offering one another, this ability to say, yeah, this actually does impact all of us, and it doesn't necessarily always feel great. It's an interesting place of vulnerability that you end up finding yourself in, I would imagine.

Eavan O'Neill: Absolutely. 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. I remember feeling super isolated and really alone. 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. If you have anyone that needs someone to talk to, whether it's Stargardt disease or other retinal conditions, retinitis pigmentosa, which is 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. That's what the entire running thing has sort of spiraled into. 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.

She wouldn't dream of telling people that she's dealing with this, because she probably wouldn't want the limelight, but also because it was terrifying and embarrassing and weird. 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. I have to continue, Lisa, telling myself that 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, beautiful life regardless of this. You can still have, sorry, there's a car beeping outside, I don't know if you can hear that, you can still have an amazing experience in life with this. And the messages from parents and young adults my age and younger, people of all different ages and backgrounds that message me, either asking questions about Stargardt disease or asking who my doctors are, what my doctors are saying, asking how our family has dealt with X, Y, and Z. I have these special TV glasses, 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. The amount of people that have messaged me about those, asking where I got them, that have either Stargardt disease or something similar or something in that same vein, matters to me so much more than anything else. 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 be myself in that way. The vulnerability piece, I think, is so important. That's always been important to me, but this is just a completely different version of it.

Lisa Belisle: 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 the creating of the glasses. 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 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 saying, all right, let me tell you a few things that I am really challenged by, and how could you help me with this? So we really need people like you to do that.

Eavan O'Neill: Yes, I agree. Absolutely. 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. I know that there are people that have Stargardt disease that don't want anyone to know, and it's not a part of their life that they want to share. That's completely respectable too. Whatever you want to do with your journey is okay and fine. It's just one of those things, 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. Even if I have no following, I am so glad that it has become a superpower for me in that way.

Lisa Belisle: 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 disease or any sort of other issues that they want to process and experience in their own way, I would never want them to do anything that's outside of their comfort zone. Because I think the fact that you're choosing to show up and be vulnerable and be courageous, that requires a certain amount of energy, and it requires a decision that you've made about your own life. Other people who have other issues, 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. At least that's what I choose to believe in my political beliefs.

Eavan O'Neill: I agree. I agree completely.

Lisa Belisle: So one thing I'm interested in, this field team member for Janji, because I know Janji is a running organization company. What has that meant for you?

Eavan O'Neill: 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 Maine Marathon. 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. So I had that 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. I ended up moving to Boston that following summer. I live in Boston now and work in Boston. If you know Boston, then you know 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.

I decided, it 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. I should also not continue without mentioning that I was diagnosed at Maine Eye Center with cone dystrophy, which is an umbrella term for different types of retinal conditions that have to do with your cones, your central vision. But Maine Eye Center doesn't have these machines called electroretinograms that look directly at your retina and would be able to tell if you have Stargardt disease. So after being diagnosed at Maine Eye Center with cone 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.

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. Rachel Huckfeldt, and a resident at the time. And they said, listen, we looked at your charts. We know you have Stargardt disease. We have race car drivers that have Stargardt disease. We have artists that have Stargardt 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. The bedside manner was just a world of difference. My family and I left that experience with Dr. Huckfeldt feeling much more positive about my future. 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 for, I will tell you. So I felt better.

I felt safer. All that's to say, I knew I wanted to fundraise for Dr. Huckfeldt when it came to the Boston Marathon, if I was going to be running. And so that happened. It was really exciting. I applied, and I was lucky enough to be accepted onto this team of runners, and they asked what area I would like to fundraise for and what department. Dr. Huckfeldt has a discretionary fund, which basically means that she can use that money for whatever area of research she thinks is most important. 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. 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.

About four months after being diagnosed, I knew I wanted to get away from the Northeast, I knew I wanted to get away from everything that happened that spring. 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. Sam had just 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. I would love to chat more about it. It's super early stages. And I was like, whoa, someone thinks this is interesting. This is crazy. I went over and said hi to Sam. Sam and I were acquaintances in high school, but never close. I told Sam the whole story, and he said, okay, let's brainstorm, let's come up with some ideas. So Sam technically started filming my journey in 2020. Sam's family still lives in Maine, so he came home the following summer and filmed me in Maine. From 2020 through 2022, he was filming at different points in Montana and Maine. So he had a ton of footage. We weren't really sure at that point what the story was going to become. He just knew he wanted to get film of me running, and eventually tell the story however we decided that it should be told.

When I got accepted to the Boston Marathon, I called Sam and said, I just got accepted to the Boston Marathon. I think that it would be really cool to get a brand involved. At first I was like, Asics or Hoka or something big. And Sam was like, I think you should take a step back. What about Janji? Have you ever heard of Janji? And I had never heard of them at that point. He said, why don't you take a look at their website. I do freelance for them, and I know the content marketing director, and she's great, and I think that you would really resonate with their mission and their values. So I took a look at their website, and I absolutely resonated. Sam was a hundred percent right. They have this group of athletes called the Field Team, and it's a group of individuals from all over the world. We have people in Hawaii, someone I think is in Singapore. It's all over the world. They are individuals who have faced or are facing adversity in some way and are wanting to do something about it and wanting to be active and out in the world regardless of what's happening in their life. All very positive, unique, amazing individuals. I was like, Sam, first of all, I'm honored that you think I could even be a part of a group of people like this, because this is insane. All these people had huge followings, and I'm like, I have my Maine crew and my friends in Boston that know that I even exist. So Sam was like, well, let me get in contact with Kyla, who was their content marketing director. And basically it all sort of unfolded. I met with Kyla. Janji headquarters is actually in Somerville, Mass, so right outside the heart of the city.

Kyla had come up for an e-commerce shoot, and I met with her, told her my story and what I just got accepted to, Boston, and that I would love to represent Janji. It all fell into place, and it was great. I joined their field team that spring. Since then, I ran the Boston Marathon and wore all Janji. Their clothes are great. I have to plug, they have great high quality running clothes, hiking clothes, lounge, whatever you're interested in doing. It's been an amazing experience. I've been able to connect with other people who, although they may not have a retinal condition or be experiencing exactly what I'm experiencing, they're all going through and battling their own unique thing. We've been able to connect on that level and in those shared experiences. It's been amazing, and I have no plans to not be involved with Janji in the near future.

Lisa Belisle: I give you a lot of credit for running Boston. I've run it twice, and I wouldn't say it's the easiest marathon. If you want an easy marathon, maybe try something flatter, but it is a great marathon, and certainly if you're somebody from New England, it's just iconic. So the fact that you were fundraising for this really important cause, and also you are running this marathon that all runners aspire to be in, it sounds like you've continued on this really interesting journey that five years ago you wouldn't necessarily have thought that you would've found yourself doing. You wouldn't have been probably running the Boston Marathon, I'm guessing.

Eavan O'Neill: Yeah, no, definitely not. It's so interesting, because sometimes I think of my life in two, and I think of the Eavan pre-diagnosis and the Eavan post, and it's really interesting. My perspective has just completely shifted. Human beings go through a lot. Like you said, there's a lot of instances that happen in life where you're hit with something really hard, or you have to deal with grief in some way or hardship that you do not expect. I think a lot of people change when that happens, or their outlook on life changes, or some aspect of who they are is altered. So it's funny, because I sort of look at myself in two nowadays, and I love the Eavan I was before my diagnosis, and I absolutely love the Eavan I was after, but they are different. I think I have a lot more empathy, and I look at individuals differently when I meet them, and my friendships have changed. Just the way that I understand individuals has changed too. So it goes so much deeper than you ever could realize. I don't really know how I got off on that, but...

Lisa Belisle: It's a great way to end our conversation, because I often have had the same reflections, that you can live in the world in a surface way, but there's a lot that goes on under the waters. If you're either forced to or just kind of inclined to go a little deeper, then it does just change the perspective that you have on your entire existence. So I think what you're talking about seems really appropriate as we wrap up our conversation today. I can see the sun's starting to come in on your shoulder, so it's like telling you, hello, get back out into the day and enjoy the light. I've been speaking with Eavan O'Neill. She's a marathoner, fundraiser, and advocate for the blind and visually impaired. She's also a field team member with Janji, and she is a fellow Yarmouth High School graduate. So go Clippers. I really do appreciate your taking the time to have this conversation with me and to let everybody else that listens to Radio Maine have an insight into your world. So thank you.

Eavan O'Neill: Well, thank you so much, Lisa, for having me. It's been an honor being on the podcast and an amazing opportunity getting to tell pieces of my story and just chat with you this morning. So thank you so much.

Lisa Belisle: I'm Dr. Lisa Belisle, and you've been listening to or watching Radio Maine today with Eavan O'Neill. Thank you for joining us.