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The easiest place to begin is to say that these past few years have been a journey—one that is certainly not over and, frankly, will never be. At the beginning of 2019, I was diagnosed with moderate to severe progressive hearing loss—and that diagnosis led me on rocky trail of denial, frustration, admittedly some anger, and a constant forward lean toward acceptance. Fortunately, triathlon has been a stable force that has helped me keep that focus on the positive.
My hearing loss was insidious. Initially, I was focused on the ringing. Roughly four years ago, seemingly overnight, I developed profound tinnitus—a never-ending high-pitched ringing in both ears. It sounded like a swarm of 1,000 mosquitos, constantly buzzing. It’s the loudest when I am trying to concentrate, for instance when writing or reading, or when it is quiet, like trying to sleep at night. It is unrelenting and there is no escape. I kept it secret for years because I felt like a crazy person. Maybe I was just stressed, maybe I wasn’t getting enough sleep, maybe I had an inoperable brain tumor and it didn’t matter any way. All these nonsensical thoughts clouded my mind.
After realizing it was more than just tinnitus and that I wasn’t hearing correctly to boot, I made an appointment with an audiologist, who diagnosed me with bilateral otosclerosis, a rather uncommon hereditary disease. In otosclerosis, bone remodeling occurs within the bones of the inner ear, preventing them from vibrating, thus rendering them unable to conduct and transmit normal sound. Historically, surgery has been the treatment of choice, but the post-operative limitations—like an end to scuba diving and protracted exercise limitations—made surgery an unappealing solution to me.
That was 2017.
Things started unraveling a bit after the otosclerosis diagnosis. Initially, my response was one of relief: I had a diagnosis. I didn’t have a brain tumor, I simply had a condition that could be rectified with surgical intervention if I felt my quality of life was being compromised by my hearing impairment. But soon that relief turned into denial: I’m too young to have hearing loss. I care for my body, I never listened to loud music in headphones, it’s not fair, I’ve done everything right.
And with that denial, I refused to accept the possibility that my condition was worsening. I was adept at making excuses: I couldn’t understand my students during class—it must be the acoustics of the lecture hall; I couldn’t hear my clients in the exam rooms—they must be mumbling; I couldn’t engage in conversation at cocktail parties—I didn’t really know what they were discussing to begin with. It wasn’t until I couldn’t hear my children when they were talking to me that I outwardly acknowledged that I was having significant and progressive hearing impairment.
Emboldened by the drive to hear my boys’ voices clearly again, I made a pre-op appointment at the beginning of the year to have the surgical correction (stapedectomy), prepared to give up several months of triathlon training and my hard-earned World Championship spots at the ITU Olympic distance and at Ironman 70.3, as well as a lifetime of scuba diving. However, my audiogram indicated that I now have a secondary condition, sensorineural hearing loss, on top of the otosclerosis, that effectively takes the surgical option off the plate. This was the moment when I found out that my hearing loss was untreatable, permanent, and would steadily progress to deafness. And this was the moment when I really had to dig deep.
I would love to say that I am so tough and so strong that I have overcome it and I won’t let it beat me. But that would be disingenuous. In full transparency, from time to time, I mourn the loss of my hearing—and then I chastise myself for those moments of weakness, as I know there are so many people out there with greater losses. As an athlete, I am accustomed to confronting hurdles and setbacks—challenges that I can overcome if I work hard enough. The whole idea of facing something that is progressive and worsening that I have no ability to control can sometimes feel overwhelming. There’s no amount of working hard that can change my hearing loss.
Hearing loss is an invisible disability. It’s hard to appreciate the significance of the loss unless you experience it personally. It’s a loss of your means of communicating with others. You start to feel like a lesser person, like you are broken. It mucks with your self-esteem and self-worth. You lose your confidence, because you start to doubt everything you hear and question if your responses and reactions to others are appropriate, and that diminished confidence leads to anxiety.
I’m sure people must think of me as aloof, rude, or even unfriendly. Truthfully, it’s exhausting to try to carry on a conversation when you know that you are not hearing the majority of what’s being said. It’s demoralizing and embarrassing to ask over and over for things to be repeated. People get frustrated having to repeat themselves and the compromised listener feel like she must apologize for her hearing loss. In fact, it’s pre-conditioned: “I’m sorry, I missed what you said.” You find yourself trying to participate, smiling politely and watching others to gauge their responses. Then you simply excuse yourself from the conversation, because it’s easier to walk away than not be able to be included. In the end, it’s easier to simply not engage in the first place, avoiding conversations before they even begin. All of it can be exceptionally isolating, and I can readily see how those who do not have strong social connections can find themselves withdrawing from interactions and succumbing to depression.
In February of 2019, right around my 44th birthday, I was fitted with hearing aids. That has been its own learning curve, but ultimately they’ve profoundly improved my life. I can interact with my students during lectures, I can better hear my patients’ owners in the exam room, I can better interact with my co-workers, I can engage in conversation in social settings, and I can hear my children at the dinner table. And I can hear birds—birds, and so many other sounds I hadn’t realized I was missing. But hearing aids have their limitations as well. The ranges of sound I have lost to otosclerosis cannot be recovered. Categorically, I have lost the ability to perceive bass tones, and as a musician and someone who loves music, being unable to hear the full range of frequencies leaves the music sounding hollow, incomplete, and ungrounded. I miss the fullness and richness of the musical experience; that loss has been particularly emotional. Likewise, hearing aids are simply amplifiers. While they do a great job of amplifying the sounds you want to hear, like voices, they also magnify all the ambient sounds—the clinking of silverware, the tapping of dog nails, the jet engine roar of the microwave, other people’s conversations. Trying to actively filter out the information that you need from the overwhelming amount of incoming auditory stimulus can be mentally straining and exhausting. I just want to retreat, to pull away, to escape.
And this is where triathlon comes back into the picture. Hearing aids and exercise do not mix. They cannot get wet or be exposed to sweat. Plus, even if you weren’t planning on sweating (which is never the case for me), the prospect of a $4,000 piece of technology, not covered by insurance (fodder for another essay), flying out of your ear on a ride or a run is not a gamble worth taking. So, those large swaths of time when I am training and not wearing my hearing aids have become a welcome reprieve. During my day-to-day, it’s rare for me to forget that I have hearing loss. But when I am exercising, it all slips away. Plus, my tinnitus is masked by the sound of my breathing when I am swimming, biking, and running. So, in many ways, triathlon is very much my escape from something I can not control.
But nothing happens in a vacuum. Hearing loss does affect my training and racing, especially in cycling. I have now come to understand why I have such a generalized fear of road cycling and an aversion to group rides. I can’t hear cars approaching until they are right on top of me. To be unaware there is a truck barreling past you until you feel its pull and sense the wind it generates is jarring and terrifying. You can’t help but react by tightening up. It is immensely frightening, and my car-induced crash last year has made me even more reactive. I rely on all visual cues, so I am always moving my head around, scanning my surroundings. Trying to relax into my aerobars and maintain excellent aero position is a challenge.
Group rides also put me in an uncomfortable position. I can’t hear people coming up beside me, nor can I carry on casual conversation. If I try to, it takes so much concentration that I am unable to ride safely. This also applies to running and any training with others. I’m not great company and I worry they’ll think I am rude. So, I would rather go solo on all my training adventures. Exercising alone in the vast silence that is hearing loss is the only time the silence is truly peaceful.
Racing is also unique for the hearing impaired. Many of my friends and fellow competitors comment on my focus before races. Perhaps this is one superpower that hearing loss has given me: the ability to cancel out everyone else’s nervous chatter and focus solely on my own race. During the swim start, I watch the other competitors for cues to see when to start, since I can’t hear the countdown. Fortunately, I am quick out of the water, so the number of “on your lefts” I don’t hear on the bike are few. I feel justified for all the teasing I endure for rarely smiling or interacting when racing—it’s likely because I don’t hear anyone cheering.
Has losing my hearing affected my life? Absolutely. And profoundly so. Can I say that I have triumphed over it? Not at all. Will I allow it to defeat me? No, but it will require sustained effort, and I am not too proud to acknowledge that there will be days when it gets the better of me. But I will always maintain a constant lean toward the finish line. Because life is an endurance event. And even if my steps may falter or my pace may slow, I will always keep moving forward.
Hearless triathlete. Working on fearless.