My name is Ethan Morrobel and I have Usher syndrome type 1b, which means I was born with hearing loss, tunnel vision that's slowly fading to black, and balance issues that make me look like a baby giraffe learning to walk. I’m not going to sugarcoat it. Life gets uncomfortable sometimes. But that doesn’t mean it’s not good!
My mom, Pamela Aasen, actually wrote articles about our family journey with Usher syndrome (for example: EP Magazine May 2023 and other issues in archive www.epmagazine.com). This is the story of my brother and me from my point of view. This is my perspective of a life full of challenges and successes. Life has been like a rollercoaster, and I love roller coasters (I don’t get dizzy). There are ups and downs, good times and bad. We all want things to be smooth sailing, however that’s not reality. Everyone stumbles at some point, and for people like me with a disability, those bumps in the road can feel like mountains, but we need to navigate them the best we can.
I have known my whole life that I had differences, though I do not remember being diagnosed as deaf when I was 10 months old or getting my first cochlear implant (CI) at 13 months old. Getting my second cochlear implant at 5 felt like Christmas morning. I am 22 years old now and things are very different. Back then, it was one CI per deaf person. My brother got to be a guinea pig for a study on two CIs at a young age. My mom said they could only have him in the study if I got a second one too. Turns out, two CIs from a young age is better, and now that’s the norm for deaf kids who want to hear and speak.
I was diagnosed with Usher syndrome at 7 and found out that my eyes were messed up, too. I became a self-advocate early on, meeting with my Teacher of the Deaf (TOD) and doing a presentation for my teacher and classmates every year, about how to help someone like me in class. In second grade, I added vision and balance. In fifth grade, I wrote a speech about it for the school speech contest (You Tube: www.youtube.com/watch?v=XYq1sxEAOKw&t=34s) and won second place. The next year, I wrote a speech about public speaking and won first place. The more I explained my needs to others through presentations (with my brother, in middle and high school), the more comfortable I became. It definitely helped me understand myself better and how to advocate for what I need.
My parents were the ones encouraging these presentations. They taught me from a young age to not hide my disability, but to be proud, accept myself, and not be embarrassed or feel bad about who I was. I didn’t try to hide my cochlear implant processors as a kid, I decorated them, made them noticeable, so people would ask me about them. In my teenage years I kept them plain, but now as a young adult, I have white processors to make them more visible again. For me, it’s “this is the life I have.” In some ways, I am fortunate because I share this diagnosis with my brother. It’s been a massive help because Usher syndrome is a very rare disease, so there are not many people like me. Having one of the closest people to me have it as well allowed me to have more confidence. We go back and forth with one of us doing great and the other one struggling, so we help each other out. We’re always pushing each other to do better and to make sure that we’re both being accommodated in the ways we need. Having a great support system has been a huge help with the uncomfortableness of just trying to live life, but also doing all of the therapy from a young age.
Looking back at being uncomfortable as a kid, it wasn’t always easy, but it made me who I am today. It could be tough seeing other kids coasting, while I had to stress about different therapies and teachers, batteries, my FM system, the accommodations on my IEP, and a ton of other stuff. Some days you want to fly under the radar because kids can be jerks. It took time to develop the resilience, but I made the decision to just own it and embrace being “different.” DIFFERENT IS GOOD! Being deafblind means I’ve always had to work much harder than most people to do everyday stuff. Luckily, my parents always made me feel loved and accepted for who I am. No “fixing” needed, just me living my life. What I needed when I was young was for the other kids to understand and not make fun of me, so it was better to create chances for them to ask questions. When they thought I was somehow getting unfair advantages, I would try to explain it in terms they would understand. It’s like glasses; they don’t give an unfair advantage, they just help someone see what everyone else is seeing.
School was a constant grind. It took so much out of me just to hear, see, and move around the building. All that effort built up and I’d end up totally wiped out, in a way most people don’t get. The fatigue affected my memory, made it hard to participate or finish my work... basically everything. Some days, I’d need extra time on a test, other days I was okay. It was all over the place. I needed to know that I had the option for help through my accommodations if things got rough. The sessions with my Teacher of the Deaf were a lifesaver. It was a relief to step away from the classroom chaos. She’d explain information from class, one-on-one, and if there was time, we’d kick back and talk about what I was interested in, like space and geography. All of this was hard to explain to friends. For my 18th birthday, I had my group of best friends over for a “dinner in the dark.” They fumbled around with masks and earplugs, trying to serve themselves in dim light. Even with me explaining stuff over all those years, it finally clicked for them, a tiny glimpse of how tough it is being me.
My life wasn’t “regular” with all the therapy, trainers, and counselors, but my parents made it about the people, not the appointments. They turned them into adventures, making everyone feel like friends. Plus, there was usually a sweet reward, often a new toy airplane. It’s a reminder that even when things are tough, the right people can make all the difference. It wouldn’t have happened without those amazing professionals who supported me. I feel incredibly fortunate to have had such a supportive team around me. Each and every one of them made a huge impact. They didn’t just see me as a patient; they treated me like a person. Now, as an adult, I know it’s called “family-centered care,” but all that matters is it worked out pretty well.
Being deafblind and balance challenged can make things uncomfortable. Being in an unfamiliar environment, a dark place, or the fear of falling and bumping into things is no fun. But I grew up with a “no fear, embrace the uncomfortable” mentality. My parents basically instilled in me the belief that my limitations shouldn’t dictate my potential. My motto has been “DO WHAT YOU CAN’T,” a quote by one of my favorite YouTubers, Casey Neisstat. This philosophy has been the driving force behind my life. I actively sought out experiences that challenged me, pushing past my comfort zone and embracing the unknown. Whether it was learning a new sport, participating in a public speaking event, or embarking on an independent adventure, I never let my limitations be an excuse to hold back. There have been some moments of doubt and fear, things got uncomfortable and at times I stumbled, both literally and figuratively. But that “embrace the uncomfortable” spirit always kicks in, reminding me that the most awesome stuff often lies just beyond my comfort zone. Every challenge I overcome, every fear I conquer, just proves that pushing through the uncomfortable is key and helps me grow.
It’s not just about the attitude, you need to put the work in. Practice at anything you do is important because success doesn’t come easy for anyone. I’m incredibly grateful for all the support I’ve received. While having two cochlear implants was crucial for my speech and listening development, it was only one part. My appointments (with my brother) were enjoyable thanks to my therapists’ creativity, and my mom was a master at turning our home into a language practice ground. Family dinner games are still a favorite. The same goes for sports and other activities. In some ways, I am never off the clock, because it always takes more effort, more practice, more attention to detail. Riding a bike took years, but I never gave up trying.
Knowing my life couldn’t just be about appointments, my parents finally signed my brother and me up for baseball. It was a natural fit, as baseball was my childhood passion and I loved going to Toronto Blue Jays games. While hitting wasn’t my initial strength, my dad, brother, and I persisted, practicing whenever possible. My coach asked me to try pitching, something I’d never done before. I decided to give it a shot. Stepping onto the mound, it felt like where I belonged. Baseball dominated my early years, then swimming became the focus, but my interests have been all over the map. I’ve tried it all: from chess to hitting the slopes and nailing jumps. I’m currently putting my balance to the test on the ice rink with hockey. Let’s just say I’m learning and keeping things interesting.
Life throws curveballs. My dream was always to be a fighter pilot, but reality said no. Thankfully, my family has this “closed doors, open windows” thinking. I figured if I can’t fly them, I would design them. Now, I’m an aerospace engineering student! In Canada, I joined air cadets and even went to a camp at an airbase. When we moved to New Jersey, I found Civil Air Patrol – basically the same thing, but American. They have awesome Orientation Flights where you get to co-pilot. I’m not in CAP anymore, but I still fly virtually with the same apps real pilots use.
Life always has a way of reminding you to not get too comfortable. I’d been playing baseball for many years as a pitcher, and even made my high school freshman team. Then it started to become more dangerous, as I lost more vision, and I had to switch gears. Instead of being sad that I stopped playing baseball, I moved my attention to swimming, worked hard at it and became a high school varsity swimmer. I think the proudest moment of my life to date was receiving our county’s Scholar Athlete Award in my senior year, even beating some D1 athletes. I joined a paralympic sports club and competed nationally in swimming, and track and field events with other visually impaired athletes. I won some titles and broke a few records along the way. To add another cliché, life gave me lemons and I made lemonade.
I’m no stranger to overcoming challenges, but the pandemic really tested me. It was the first time something felt completely out of my control, something I couldn’t work around. It was a real low point, like being stuck in quicksand. I have always had a high level of motivation, have learned to be a strong advocate for myself, and I have always had a positive attitude. But this one really took the wind out of my sails. Senior year in Scotch Plains was supposed to be the culmination of all my hard work. I was making plans with my friends and dreaming about the epic time we were going to have: graduation, prom weekend, senior ditch day, the whole shebang. Then, March 2020 rolls around. Lockdown hits, and my dream senior year vanishes. Every single event was cancelled. I was crushed.
It totally messed with my head. I lost my curiosity, motivation, and felt like giving up. As if weathering the pandemic storm wasn’t enough, the universe threw a series of additional punches: my girlfriend broke up with me, my grandfather passed away in another country, and my swimming dreams stalled. To top it off, I faced three separate COVID isolations while starting a locked-down college experience, all while recovering from wisdom teeth removal and battling mono. Dealing with all this while adjusting to college and my disability, including not driving anymore and figuring out my readiness to use my cane, was a whole other level of hard. I had orientation and mobility training all through school, but with the vision I currently have, I don't necessarily need to use the cane on a day-to-day basis, except maybe at night. The scariest part about training with a cane is thinking about how much vision I will have when I do need to use it. It’s just another uncomfortable part of my journey that will continue to evolve. During that time, I didn't make use of the resources or accommodations available to me. Eventually, I got back on track and got through the tough times with the support of my family and talking to mental health professionals. From the people I looked up to in the USH community to connecting with my peers at the USHthis summer camp, everyone’s unwavering belief in me helped me find my way back.
My life has has been uncomfortable, which is why the title of this article made sense to me. It came out of a conversation with family friends about how people are obsessed with comfort. I said, “My life has never been comfortable.” But, I’ve learned to see that discomfort as a chance to grow, not something to avoid. I share my story so that maybe it’ll help someone who’s going through something similar, see where I struggled and messed up, and avoid those same mistakes. It’s about seeing each other’s wins AND the tough stuff. We all need support sometimes, and there’s no shame in admitting that, or asking for help when you need it.
I don’t want anyone to feel sorry for me, and I definitely do not feel sorry for myself. That would imply that my life sucks, and also pushes this idea that you have to be “normal” to have an awesome life. Usher syndrome has shaped who I am, in a good way. I wouldn’t be the same without it. It has led to being a part of starting a camp for kids with Usher syndrome in the United States and United Kingdom, as well as, travelling the country to compete in Paralympic swimming competitions. My whole life has been about showing people what I’m capable of and not making excuses. Usher Syndrome has definitely shaped me. It’s about grit, not letting obstacles break you. My path is winding a bit differently than I expected, but I’m finally realizing that there’s no one “right” way to do life. It’s MY journey, and that’s what matters.
ABOUT THE AUTHOR:
Ethan Morrobel is an engineering student at the Rochester Institute of Technology (RIT) studying Aerospace Engineering. He has been educating and spreading awareness about Usher Syndrome type 1b since he was diagnosed in 2009. He is an Advocacy Ambassador for Ava’s Voice, an USHmentor at the USHthis camps for youth with Usher syndrome, in the US and UK. In 2023 he was named a National Inspirer by the Cochlear Foundation Achieve Anything Program for his advocacy efforts. He has competed across the country in para-athletic events, and now participates in a variety of intramural sports at RIT.
Read the article here.