Acts of speech hold power. When I was approximately 23, a simple utterance reminded me of this. The ire coldness of the air that carried it pierced me. And while the breath that carried it has long since dissipated, it emerged from me without its words.
“Get used to it.”
Funny, even anti-climactic, these words: this is because they are so simple, common, and unimaginative. Certainly, they can be insensitive. However, I never imagined what gravity they could wield. I never guessed that they could be so deleterious. At any rate, these were the words that an ear, nose, and throat (ENT) specialist dryly imparted to me near the end of my consultation.
Not long before this, I had begun to suffer from a cacophony of noises and ringing in my ears, and all over and within the inside of my head, without any clear precipitating event. Sometimes there were three, four, or five different tones, rumbles, or roars. My hearing had been faltering, which I had only discovered after attempting to enlist in the military, an action that resulted in me being rejected for my apparent deficits. Soon, I experienced dizziness and felt grossly overwhelmed, like I was alien in my own world. Phantom noises interrupted my sleep and triggered seizure-like bursts of adrenaline at random. Slowly but surely, my focus was slipping. Conversations became hard, tiresome. Words started to arrive to me as stones, devoid of meaning, heavy with force.
I told the doctor all of this. He conducted tests. Outwardly I was mostly still and tense. Mildly sweaty, I continued to attempt stoicism, not wanting to show weakness. Emotion crept through wobbles and cracks in my voice as I answered his questions. He seemed to register this, and rather intellectually, but he remained indifferent.
You are going to die from this. That was my thought in that moment. You have cancer, or a tumor, or something terrible. It’s obviously killing you.
“You have sensorineural hearing loss. The ringing is called tinnitus,” he said, rather pragmatically, at the conclusion of his short investigation.
“From what? Should I get an MRI or something?
“No, that’s not necessary.”
“What’s causing it?”
He shrugged. “There is no way to know.”
“What can I do?”
And then those words arrived. “Get used to it.”
Following this exchange, he offered me a prescription for an antidepressant with all the bearing of a lord offering a beggar some change. I refused it. Something was physically wrong with me, I remember thinking. I didn’t want a prescription. I wanted an answer, a cure. After explaining that I didn’t feel comfortable with an anti-depressant without knowing what was wrong with me, he simply shrugged. “See your primary care doctor if you change your mind. I don’t usually give these prescriptions anyway.” And with that, he promptly concluded the appointment.
The physical sensation in that moment is indelibly impressed in my memory. I cannot explain it, but it was akin to nausea and vertiginous emptiness. I was moving downward while my body stayed still and my auditory sensations engaged in a riot.
How could anyone live like this? I was slipping. No one can. I can’t do this.
To be fair, I don’t necessarily blame the doctor for his manner. I was his last patient of the day. He didn’t know me. Fatigue greeted me from the puffiness of his face, from the caving of his shoulders. As someone who later joined a helping profession, I know that we all have these bad days. Still, the affects of his callousness and silence on my condition were palpable. He offered neither an explanation of my symptoms nor words of encouragement, no hope nor referral. He did not even offer me a follow up.
Well, that’s it.
Time passed. Thanksgiving came. Hunched inward, I ate quietly, mechanically, somehow not used to my hands amidst other people. My family was conversing and laughing. Meanwhile, I was pretending to be the young man they once knew. In that moment, I remember estimating that I would definitely not live to see 30 years of age. Suicidal ideation occurred daily; however, I did not think that I would be dead so soon because I had any intention of killing myself. Instead, I figured that the sheer amount of stress that I experienced on an almost moment-to-moment basis would accomplish this thoroughly, either by heart attack or stroke.
And quite honestly, I did not mind the thought. There is no space here to properly explain my judgment, but I’ll try. Sensory deprivation and its consequences depress the mood and complicate every life challenge and developmental hurdle. Soon I was left without a relationship, without friends, and without hope. Bit by bit, I experienced my personality being deleted. I was not stimulated; I was still. Ruminated and ill. Who could live in those conditions?
Well, I did, and against my will. I kept on breathing to my own chagrin.
The journey was difficult. I had to fill the time. I had to distract my mind from the cacophony. So I wrote. Books, short stories, essays ― most of it terrible, obtuse, and didactic, and I knew this, but I wrote anyway. Loads of it was doggerel, but it served as life support for my imagination. Strangely, I became more spiritual and religious where I had previously been so staunchly unbelieving. I did not attend church. The thought of that overwhelmed me. Instead, I read a bit of Dostoevsky when I could focus, which made me love writing all the more. The man has been dead for over a century and his words helped save my life.
I had to get up in the morning although my spirit felt dull and my heart and mind felt dire. When I wanted to numb and wither, I walked, or ran, or boxed. When my mind began to slip and there was no escape, for elusion is impossible when your enemy is your own anatomy, in place of meaningless suffering, of odious stillness, again I wrote stories and fairytales.
I am thankful for my family and my few friends of this time period. I do not mean to convey that I did all of this on my own. They supported me in ways I cannot even cognize. They housed me, fed me, provided me with the invisible manifold of social support so crucial to anyone facing life challenges. They pushed me; they forced me to socialize. Never did they shame me, but they made me so angry, so irritable. And I love them for it.
Soon enough, I enrolled in school. New friends arrived in bundles. Slowly, things improved, but not in any linear fashion. I would go to class, do my work, and socialize but I became known for ceaseless, misplaced smiles and endless head bobbles. Every moment of every conversation required conscious effort, inference, and risk. People always had to repeat themselves or I would make a mistake and slow down the flow of dialogue. Despite their best efforts, I would always notice their agitation, their tiredness of me. I was lost, alienated. My speech became pressured, insecure, rambling. Still, my head rang and I often staggered. Reclusion thus became more comfortable. I lived for years like this, without hearing aids.
Why did I live without hearing aids for so long? Good question! Hearing aids are considered cosmetic in the United States and are not covered by most insurances. Decent ones cost in the thousands of dollars. This is unconscionable. Not only do they improve the quality of life, they are medically necessary. The more time you spend without hearing aids, the more your brain forgets how to process sound ― words ― social cues. Disability can soon pursue, precluding your ability to work and afford them, which, again, only hastens the decompensation.
Finally, I obtained them, but only after I managed to rebuild my life to some major extent, with my family’s help and my own perseverance, and procure a job that allowed me to finance their purchase.
Surprisingly enough, during this time, I also had to quest after my diagnosis and recovery plan. None of the litany of medical professionals I ever consulted with ever helped me find an answer until the last. In fact, only two years ago was I finally diagnosed with “cookie bite hearing loss,” a rare auditory condition that affects the processing of mid-frequency sounds, and educated on exercises to help preserve my balance. I’m supremely and inexpressibly thankful for this last doctor who cared enough to do a full workup and name my condition. A good mystery might be entertaining when it is found in a novel, but I can assure you, it is hardly fun when it is found in your health.
Now, for the positives. Obviously, I have not died. Although, if I have, at least this would be rather exciting for paranormal enthusiasts. After all, that would mean that I was a revenant and solid proof of the existence of an afterlife. Perhaps this could also land me a role in a future Ghostbuster’s movie. Call me, Leslie Jones.
Anyhow, all humor aside, I am 33 now. I smile a lot. I am neither ruined nor deleted and while I am indeed a different person, I am also a better one, emboldened in new ways and capable of loud and annoyingly boisterous laughter.
I am a clinical social worker, having obtained my Master of Social Work. I have started my own business and I am involved in a nonprofit that seeks to enhance the quality and accountability of mental healthcare through evidence-based practice and quantitative methods. Presently, I spend much of my time being of service to individuals who are struggling with life changing illnesses, obstacles, or situations, helping them to recover and/or grow.
Importantly, as deprived as I was, I am conscientious that I was fortunate to have access to the resources that I did. Paying this forward is an ethical mandate and I have a debt to remunerate. Innumerable individuals suffer from even more complicated forms of deprivation on top of mine, be it for reasons related to poverty, to institutional racism, or to so many other factors.
Such injustices can transform a Kafkaesque horror story into a Lovecraftian nightmare. This is also why slogans such as “Black Lives Matter” are so important. I can’t imagine what my life would have been like if I was born into different circumstances. Perhaps I would not be alive.
To this day, life isn’t perfect. I continue to lose my hearing. There is a marked probability that I will be legally deaf within a decade and a half. My dizziness, my nausea, are common companions. More and more, I find myself lost and aloof in the same social situations that I once enjoyed. Strangely, while I have forgotten what the experience of silence is like, I have at least trained myself not to be swallowed by the wormhole in my head, which can so readily estrange me and sap my sense of wellness.
The loss is unutterable. The feeling of a personal death is real. I thought I was dead—and in many ways, more spiritually speaking, I was in part. There are many things I am not sharing. I am irrevocably different.
However as long as you do not give up you will adapt and grow. You will be given opportunities to experience life again in ways you never imagined.
Many days will temporarily block out the sun. Nonetheless, if this experience has taught me one important lesson, it is that regardless of the pain, regardless of the hopelessness, it is invariably ephemeral—it does pass, it does fade, and days of happiness and accomplishment follow.
I can honestly say that I think I am happier than I ever would have been otherwise. Irrevocable difference is not irrevocable or universal loss. Again, the loss is indeed there, but the gains can also be just. So please, don’t give up. Now, I want to breathe. There will be life again.
Although this article is about hearing loss and its associated conditions, I hope that the message is also helpful for individuals who are suffering from other life changing illnesses or situations. Moreover, many soldiers experience hearing loss, tinnitus, and other similar and/or related symptoms as a consequence of their service, in addition to the burdens of injury, trauma, and post-traumatic stress. I can never speak for them, but I still hope that a facet of my experience is of use.
The American Speech-Language-Hearing Association (ASHA) is an institute that advocates for individuals experiencing communication-related disabilities and supports professionals and research in these areas. ASHA also has a list of institutes and foundations that are dedicated to researching and combatting these conditions as well. Please visit and/or support them if you are interested in furthering research, advocacy, and services for those in need.
If you or someone you know needs help, call 1-800-273-8255 for the National Suicide Prevention Lifeline. Outside of the U.S., please visit the International Association for Suicide Prevention for a database of resources.
Have thoughts about this article? Tweet them to the author at @marquisdefolie!