The easiest place to start is to say that this year has 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 these past several months have been a rocky journey of denial, frustration, admittedly some anger, and a constant forward lean toward acceptance. Fortunately, triathlon has been a stable force in my life 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 sounds like a swarm of a thousand mosquitos, constantly buzzing. It is 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 stressed, maybe I wasn’t getting enough sleep, maybe I had an inoperable brain tumor and it didn’t matter anyway. 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, inappropriate 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 refuted the possibility that my condition was worsening. I was adept at making excuses: I couldn’t understand my students during lectures (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 World Championship spots at ITU Standard distance and Ironman 70.3, as well as a lifetime of SCUBA diving. However, my repeat 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 such 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 concept of facing something that is progressive and worsening that I have no ability to control can sometimes feel overwhelming.
Hearing loss is an invisible disability. It is hard to appreciate the significance of the loss unless you experience it personally. It is 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 is 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 is easier to walk away then not be able to be included. In the end, it is easier to simply not engage in the first place, avoiding conversations before they even begin. It is exceptionally isolating, and I can readily see how those who do not have strong social connections can find themselves withdrawing from social interactions and succumbing to depression.
In February, right around my 44th birthday, I was fitted with hearing aids (HAs). That has been its own learning curve, but ultimately the HAs have 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 one who loves music, being unable to hear the full range of frequencies leaves music sounding hollow, incomplete and ungrounded. I miss the fullness and richness of the musical experience; that loss has been particularly emotional. Likewise, HAs 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 $4000 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 HAs have become a welcome reprieve. During my day to day, it is rare that I forget that I have hearing loss. But when I am exercising, that 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, my sport is very much my escape from something I cannot 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 cannot 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 and startling. You cannot help but to 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 cannot 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 training with others; I’m not great company and I worry that others 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 that 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 cannot 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. And I now feel justified for all the teasing I endure for rarely smiling or interacting when racing is likely because I don’t hear anyone cheering.
Has losing my hearing affected my life? Absolutely. And profoundly. Can I say that I have triumphed over hearing loss? 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.