In the spotlight: Ryan Coleman
Ryan attending a culinary school in Tepoztlán, Mexico.
CINDY: Ryan, thank you so much for taking the time to speak with us! To begin, I would love to hear more about your history with your diagnosis. I know that personally, for a long time, I didn’t want to tell people because I didn’t want to feel or be seen as different. In college, soon after I learned that I had Usher syndrome, I did all the things everyone was doing, I skied and traveled, and went to parties… It actually took me years to disclose that I had it, even to close friends. I’m curious about your experience with this.
RYAN: Cindy, a lot of what you say resonates with me and how I’ve approached life. To back up a little bit, I knew I had hearing loss around 5 years old, which is when I started wearing hearing aids. I was tested for vision loss around 13 and got my diagnosis around then. But, given the degenerative nature of USH3 I wasn’t noticeably affected by the full diagnosis until about 5 years ago, when I was 25. That’s when my vision started to impact me more than my hearing. Up until that point it always felt secondary, because I was focused on how to compensate for the hearing loss and how to position myself comfortably in social settings from a hearing perspective. Until about halfway through college I told practically no one, and I didn’t know how or when I was going to tell people or feel comfortable asking for more accommodations. My only goal was to be normal, to fit in.
My earliest memory of realizing that I couldn’t keep my diagnosis hidden forever was during high school football practice. I remember I was pretty good up through my junior year of high school and there came to be a point where the coach wanted me to play certain positions due to my athleticism, such as linebacker. During that trial period we practiced a common play called a “crack block.” This play is essentially a blindside block: if you’re a linebacker and someone is trying to blindside block you, your teammate is supposed to yell “crack crack crack” during the play so you know to turn your head, dodge the block, and avoid getting blindsided. It all happens quickly—in a few seconds— and during practice, maybe for 5 plays in a row I just got completely blindsided and beaten up physically (think ESPN Top 10 big hits, high school level!)—because I couldn’t hear the “crack crack crack” call. And, I just realized: this isn’t going to work.
That was when I first recognized that the system (whether high school football, or society at large) is set up such that without this condition, I felt I could be successful… but I can’t change the rules of football, or expect the other team to give me a break. It was like a little microcosm of the world, and a learning experience where I realized I could either look at that situation and get frustrated at the system, and ask people to work around me, or I could find a role within the system that would allow me to participate successfully and still contribute to a game I loved and a team I wanted to be a part of. So, I went back to being a lineman, blocking someone right in front of me. All I needed to do was track this one person, and I could do that and be a meaningful contributor.
It was a small lesson on accommodation and how you can—without really telling anybody—still be successful in a system just by changing the way you decide to approach the activity.
In college I was involved in sports and social activities… and nothing came up that I couldn’t explain away… but I found myself in this weird position where I realized I was really faking my way through a lot of conversations, especially in dim and loud rooms. I was probably only hearing 20-30% of what people were saying and I got really good at having those conversations at parties by paying attention to mannerisms as signals or cues for what people were trying to express, when they were done talking, and what kind of response they might expect. To be honest I felt like I had a robust social life the whole time, and it worked for me…
But, my last year of college, once I had my job and friends figured out, it happened to be the logical time for me to get my first—and only—cochlear implant, and that really changed things for me. Prior to the implant, during hearing tests, I could hear 20%-40% of words in a standard, quiet environment, word recognition test. (For anyone unfamiliar, this is where you sit in a quiet room with an audiologist, and they read you basic words like ‘hot dog, popcorn, ice cream’ and you have to repeat these back.) By the time I was done with my cochlear rehab I could hear over 90% of words in the same circumstances.
The cochlear implant fundamentally changed how I interacted with people. I could eat at a restaurant with moderate noise and if I positioned myself with someone on my right side (the implanted ear) or in front of me, I could actually have a conversation with them. It was really weird in hindsight, because I now realize that every time I went to a restaurant prior to that in my life, I could not hear much at all. It was like this whole new world opened up to me which led to a gradual transition where I started to see how I could actually enjoy and contribute in settings if I positioned myself properly. That eventually evolved into feeling comfortable asking my close friends to switch seats with me so I could hear, and, eventually, asking the same of people I had just met.
The last chapter of this evolution happened after college. The summer before I moved to Philadelphia to get my MBA, I was traveling with a friend who rather bluntly pointed out that I might have a really hard time in business school because of how much networking happened in large group settings, often in loud and dimly lit rooms. She was concerned that if I failed to ask follow-up questions during a conversation I couldn’t fully hear, or missed a handshake because I couldn’t see it, that my behavior could be misconstrued as rude. Honestly, at that point, I didn’t know what I was going to do.
But, an opportunity arose during orientation. Wharton offers students the opportunity over two days to give “60 second lectures” – a platform for people to tell different stories. Some are funny—some are more serious. You get varying levels of depth. So, in that moment— actually pretty spur of the moment—I thought, I actually want to give a lecture on my condition during tomorrow’s round. It was the biggest audience I had ever shared this with, roughly 250 people. I didn’t have a script, but I just said, “I have this condition, this is how it manifests, and here’s how you can help”. I asked people to spread the word. I wanted the whole school (1,700 students) to know and I didn’t want my condition to be mistaken for cluelessness or lack of social grace. That was the intent, and it worked, and the word got around.
Ryan celebrating his MBA graduation from the The Wharton School of the University of Pennsylvania
C: I think it’s so courageous that you did that… how did you feel?
Ryan celebrating his MBA graduation from the The Wharton School of the University of Pennsylvania
R: I was especially nervous before I gave the lecture. It just so happened that I was the last person to go since I was the last person to sign up, so there was quite the anxious buildup. The first thing I noticed after I spoke was this huge outpouring of support and interest. People came up to me immediately after, and over the next two years: telling me they wanted to share something they were dealing with, or let me know they wanted to help, or that they had family dealing with something similar. It just opened up so many more opportunities and I met so many close friends as a result of that day because my disclosure set the stage for us to feel comfortable sharing really interesting, personal stories later on.
C: That’s really inspiring to hear. What a huge leap of faith! I’m very happy—though not entirely surprised— that people responded in that way. In my experience, the worst part of telling people about the diagnosis is my own anticipation of it. People have always reacted with such support and encouragement when they find out, that over time it’s gotten easier and easier to say something. I’m so glad you had that experience early on because it took me a long time to learn that lesson!
On a different note, as you know, all of us have different rates of progression and severity and I just thought it would help our audience to hear about your personal experience as your hearing and vision loss progresses.
R: I notice it most in personal settings. From a social perspective, entering a dark room (restaurant, lounge, etc.) there is an orientation that has to happen, and that’s hard especially if you’re with a group of people who you don’t know well. But, to handle that situation, all it takes is one person who knows about your condition to help you
When I was first diagnosed, I wasn’t consciously aware of having any visual problems. In hindsight, though, there are moments I can look back and see how my vision was impacting my life from early on— for instance, when the sun was setting and it was really hard to pick up the cones after soccer practice, or how I was always really bad at laser tag, but nothing notable occurred to me until after my diagnosis. Throughout high school and college my vision continued slowly deteriorating
At night, now, I’m fairly comfortable if I’m walking by myself in the city at my own pace and can scan my environment. For instance, it’s easier for me to walk to a restaurant at night by myself to meet someone, rather than to meet that person and walk to the restaurant together… I have a slightly harder time walking with other people because they tend to set the pace (especially in New York!) and I don’t have the whole sidewalk to myself so it’s more difficult unless it’s a close friend helping to guide me.
I also choose to address my vision in a certain way— by memorizing how spaces are organized and following routines and patterns… I really like to cook and in culinary school they teach you mise en place, “everything in its place.” In theory when cooking, you should be able to handle most activities with your eyes closed because your station is clean, prepared, and well organized. I apply this to my life generally. For example, at a restaurant I’m always memorizing everything in front of me—where the menu is, where the glasses are going etc.
C: Most people focus on what’s lost to this disease, but I want to ask about your experience with USH3 from a different angle and talk about what you feel you have gained from living with it.
R: When I think about what I gained from this disease, it’s learning to really only focus on things I can control. You can choose to define Usher as something that takes part of you away, or you can choose to see it as something that’s a part of you. You can take the condition for what it is and recognize that there are positive things that come with it.
I wouldn’t be where I am now without USH3. I know that’s kind of a funny way to look at it, because no one imagines that a condition that takes your hearing and vision away [could also give you anything positive]. But, I’m very happy with most aspects of my life, and having to learn those difficult lessons at an earlier age was really formative. Angela Duckworth has a fantastic TED talk (~6 minutes!) on grit and the positive nature of the quality. I do believe that an USH3 diagnosis— and all that comes with it—is a strong source of grit. If I could snap my fingers and fix this now, I would. But if I could go back in time and fix it when I was 13? I’m not so sure.
Of course, there are so many little moments and regular, humbling, reminders where I could choose to be frustrated. For instance, a few weeks ago, I actually got a concussion. I bumped my head because I didn’t see a pole—I was rushing to dinner at night and it just never entered my field of vision. I remember when it happened, of course I was stunned. But I also took note that I didn’t feel a single ounce of frustration towards Usher, towards my condition, because I recognize it’s not something I can control, and I wouldn’t change my lifestyle or choose to ‘live scared’.
That being said, there are situations like this interview, where it’s important to examine the hard times: what drove me to be the person I am, and how I can help other people navigate through a situation that can be unknown, scary and frustrating. I fully recognize that there are a lot of negative aspects to this condition. It’s a very human reaction to fixate on those and I recognize that people might be at different stages of dealing with or thinking about their diagnosis. Not that I’ve gone through all the stages by any means!
Depending on the day, the month, the year, there are times when that concussion could have been the final straw in terms of my frustration quota for that time period, and the emotional response could have boiled over. But on a day-to-day basis, when I knock over a wine glass at dinner or bump my head on an open kitchen cabinet, I just let the frustration wash away immediately. For me, it’s not worth expending emotional energy on these moments because I can’t change the terms of my condition right now and I know we’re in the capable hands of the people who have dedicated their lives, whether through fundraising, academic research or pharmaceutical development, to addressing this.
Ryan with his family in Philadelphia.
GEORGIA: Listening to you, I’m thinking about how difficult it can be to convey the lived experience of this disease through words. But these small, vivid anecdotes do so very effectively. Your perspective is extremely informative, and I really appreciate your openness and willingness to share it with us!
On a related note, I’m wondering if you could talk a little more about how telling people about your condition has changed the nature of your relationships?
R: Vulnerability is such an important component of establishing relationships with people. Vulnerability is personal, it’s something you’re afraid to share… and everyone is afraid to share something, whether they have Usher syndrome or not. No matter what the vulnerability, whether it’s USH3, a relationship problem or professional issues, it’s that feeling of sharing something that makes you uncomfortable and trusting someone enough to not judge you for it. That establishes a closeness and a feeling of safety that enhances relationships, and it’s a big part of many of my relationships today. Being the first to be vulnerable is incredibly powerful, and being willing to do so is incredibly empowering.
C: I think that sentiment is so important, and definitely resonates with my own experience. On a related note, has your diagnosis had an influence over your career choices?
R: My gut reaction is no, though I guess there are some things that I know fundamentally are closed doors. But, I never really thought about them as tough to reconcile… I was never going to be an NBA athlete, for instance, and there are not any tears shed around that. I suspect many unaffected people tend to feel the same way about having an unlikely path to the NBA. I’ve been fortunate in that many of my interests have aligned with things that are accessible to me, so I don’t feel that something I’m passionate about has been taken away from me. That being said, you tend to like things that you’re good at, and I never was that good at basketball.
C: And what about your free time and or hobbies? What do you like to do and how does Usher syndrome factor in?
R: USH3 has played a role in the sense that certain social atmospheres, like clubs or large parties, were never really fun for me, but human connection has always been really important. As I got older, I started to be pickier about how I wanted to spend my time. I am genuinely interested in people, in their experiences, in what makes them tick, in who they are… I think everyone is interesting in their own way, so I started finding and creating environments that enabled me to have more enriching interactions than I would if I attended a live music venue or loud bar. I really started to enjoy hosting, having people in my own space - which I can control. This has evolved from potato chips and cheap beer when I was 23, into a wine tasting or a dinner party now.
C: On the topic of evolving and changing as you get older, when/ how much do you think about the future?
R: Medically, I am hopeful because there are people working on this condition from several angles. I’m also hopeful outside of the context of Usher syndrome…. I’ve found a way to fit into the world and really get a lot of enjoyment out of it. I feel like I’ve had a very full life to date and I don’t think I would have this perspective or appreciation without USH3. It has shaped a lot of the ways that I look at the world and approach problems, life experiences, and relationships. I look forward to tomorrow.
That’s not to say USH3 is not a big factor in my life and how I think about the future, but there are so many other considerations. If there are 10 things I weigh when thinking about what I want professionally, or where I want to live, or out of relationships, USH3 is of course one of the 10, but I don’t let it be the singular factor that dictates how I choose to live.
G: As we wind down here, I wanted to ask one last question: if you were speaking to someone recently diagnosed, what would you tell them?
R: I can only speak from my own experience, and I’ve been very privileged to have very supportive family and friends. That being said, what has helped me the most is focusing on things you can control… trying to find ways to steer things to your benefit. If for instance your friends want to go to the movies, but it’s easier for you to just go to the mall: try to find a way to suggest that! That’s not to say I haven’t sat through dozens of movies totally clueless about the plot, but those everyday adjustments are there and you will build your confidence in asking for them.
USH3 is a really frustrating and scary thing to navigate if you don’t feel like you have control over any part of your life. You might be worried that you’ll continue to have negative or limiting experiences because of the way society is set up. I would say to try “reframing”. Try to think about how to make personal relationships, professional relationships, and social interactions work on your terms. You can take a really active role in choosing the life you want to live, and you may find that the way you choose to interact with the world is exactly what other people are looking for.
Next, I would say to not be afraid to ask for help or letting someone know what you’re dealing with. I have often been hesitant to share my diagnosis, as I always thought that once someone knew, I’d scare them away or be a burden to them. The reaction is nearly always the opposite. Just like my experience in sharing my story with my classmates, the reaction is almost always an outpouring of support. I’ve learned that most humans want to be helpful and want to feel useful. Many people are also finding themselves in this world, and when you ask for help, you are giving them an opportunity to feel good about where they fit into society too.
Finally: it is important to reconcile that you are the person you’re going to spend the most time with. Educate yourself on what you can expect, find all the resources that are available to you. You can have a full life, but it starts with you taking an active role in shaping how you want to, and can realistically, experience it. There are times when you’ll feel sad or angry that you’re excluded from something that you feel you ought to be allowed to experience, but… the reality is that everyone feels that way to an extent, regardless whether or not they have Usher syndrome. Some are just better at hiding it than others.