I've Lived Without The Sense Of Sound For 25 Years
It took 16 years of self-hate, low self-esteem and anger before I reached a point of gratitude for my hearing loss.
Dean Drobot, samxmeg | Canva I have lived without the sense of sound for 25 years. Mine is a world of silence where all my adult life, I've been oblivious to all that goes on around me. My world is quiet and peaceful just as it's limiting and discomfiting.
I don't sign. I speak and lip-read. I don't use assistive devices of any sort because it's profound so no help there. It's a kind of existence where you're more or less stuck in your head, and have to constantly rely on your wits and instincts. You don't know the art of listening or the beauty of music. You don't even know what your voice sounds like, which is pretty dull if you ask me. And yet I'm grateful that I'm this way.
I contracted acute bacterial meningitis at age nine. It started as a mild fever which quickly shot up. I remember feeling drowsy most of the time, my head pounding, neck stiff and painful. My stay at the hospital lasted two weeks, and I was almost a goner by week two, having fallen into a coma. When I eventually came to after three days there was confusion all around.
My head was pounding wildly, my eyes felt heavy and dim. The doctors were doing everything to save my life including stuffing me senseless with antibiotics. They succeeded to some extent but it was too late, the effects of the diseases could not be reversed. The disease had altered my sensory nerves leaving me with balance issues and near visual impairment.
I still remember the events of that early October morning. When I came to, it marked the end of the old me and the transition to a different character. The old me was a carefree preteen, a happy outgoing child who loved music and art. The new me felt like an alien in a strange place. All around me was movement and silence.
I remember that morning clearly. My mom had stepped out briefly to go pick up some stuff from home. I had been moved from the intensive care unit to the children's recovery ward. I opened my eyes expecting to wake up to the usual bedlam, one of wailing babies and tired, frustrated mothers and shuffling feet of hospital personnel in white coats and glittering stethoscopes and glasses. Instead what I woke up to was typical yet strange. There were wailing sick and dying babies with their distraught parents looking as anxious and helpless as ever. The doctors and nurses moved around trying to save lives.
The sights remained the same. It was the sounds that had changed — or rather had ceased.
I opened my eyes slowly squinting at the bright lights that flooded the room, eyes that were almost partially impaired from the onslaught of the disease. The instant my vision adjusted, I knew something wasn't right. Something in the atmosphere had shifted. It was in the way the people moved without so much as a sound.
It was how a mother attempted to feed a sick toddler, placating him with sweet words, words that didn't come out. It was how the baby contorted his face and let out a soundless, angry cry.
It was how he violently pushed her hand away, sending the spoon falling on the floor. It was the silence, not the clanging sound that accompanied the metal hitting the tiled floor.
It was how two doctors and a nurse soundlessly rushed past me to yet another bed where a boy who was about my age had been admitted.
It was how the mother was screaming hysterically as the doctors pumped the boy's chest trying to revive him. After several attempts, they gave up. The look on their faces said it all. The poor woman fainted. I stared at all this in horror.
Horror at watching the boy die a few feet from my bed and horror at a new realization: I couldn't hear. The world had suddenly gone silent, everything moving as usual but without sound. I tried to scream then realized that I had lost my voice too. I sat there in utter shock and helplessness.
My mom was dumbfounded. Then came more tests and assessments and then the final report: the disease had destroyed my hair cells, the cochlea, and auditory nerves. Sensorineural deafness, the doctors said. Both ears were affected. It meant my hearing senses would forever be lost. I would also need therapy to restore my speech and mobility since my physical balance would be unstable for some time. I went home broken and disoriented. The transition came with so many personality trait changes like unbridled anger, societal alienation, and depression.
But the difficult part of living with hearing loss was not dealing with bullies — those children, my peers, who were so creative at giving me a brand new nickname every waking day. It was not swallowing their painful sneers and remarks, it was not the satisfaction they derived from torturing me mentally and alienating me from their play groups.
It was not the many days I spent at school isolated from everyone and feeling like a freak. It was not the lack of a strong support system or the disorientation that comes with social gatherings where I always felt left out and out of place.
It was not the funny stares at the checkout at the mall or grocery store when communication with the cashier became a problem. It was not the embarrassment of stammering in public when called upon to speak. It was not the awkward stares in the streets when getting almost hit by a vehicle, the driver cussing and hurling unprintables.
It was not the pain of meeting a man I liked and instead, they'd focus on the facade and not try to understand the real me. It was not how they treated me like an invalid and other times like an object of lust, a source of amusement. No, those weren't the most painful bits of living with this limiting condition.
The most painful part of it was that I hated myself. I hated that I couldn't hear, that I couldn't express myself, that I was always treated differently. I hated that men were attracted to me because of my killer figure and not because of my character. I hated that I couldn't fit in among peers, couldn't fit in the society.
At school or other social events, I was always reminded that something was wrong with me when I couldn't keep up with or contribute to conversations. I hated it when people used pathetic gesticulations and signs to talk to me. I refused to admit that I had a handicap, always imagined I was my old self: vibrant, outgoing, talkative. I embraced denial for 16 years.
Sixteen good years of low self-esteem, of living reclusively, of anger, of bitterness and resentment. That was the most painful bit about it. It took the realization that nothing was going to change the situation, the old me was never coming back. That no science or medicine or any human invention was ever going to rectify the handicap. The realization that I could make peace with what happened, pick up the broken pieces, and try to live as much a normal and fulfilling life as I could. It took that long and that much pain to accept that I am a meningitis survivor living with hearing loss.
Looking back I believe so much of what I went through could have been avoided if I had made the decision sooner or if things had been different. If my parents hadn't been selfish and separated and became emotionally unavailable, I could have retained my confidence. If they had been there for me I wouldn't have had to deal with abandonment issues.
Perhaps they could have taught me a thing or two about standing up to bullies. I was a child who had endured a life-threatening and altering condition. It was their love, care, and support that was vital in helping me fit into society, and in shaping who I'd be. That's why their absence made the world appear more cruel than it was.
If people had been kinder, if those kids had been more considerate, if those men had been nicer or more understanding my self-esteem would have been intact. I wouldn't have been the angry, bitter teenager I was known to be. I'd have led a more fulfilling life.
However, this is not a story of self-pity, it's a story of making peace with life, taking charge, and finding acceptance. I came to realize that 25 years is a long time to keep blaming people and the world for my problems, for my brokenness.
I've come to learn the world can be as harsh as it can be kind. I may have been unlucky but it doesn't owe me anything. I survived and I'm alive. It's up to me to make the most or worst out of my life. It took a long time to accept that I was responsible for my happiness which led to acceptance. Now I can confidently say I'm grateful for my hearing loss.
It could have been worse. Many children died in that hospital ward. Children who never had the chance to live to adulthood, who had their lives snapped violently from their innocent selves. Children like that boy who died the morning my hearing also died. I was lucky I made it alive albeit with near damage to the optic nerve, impediment speech, and mobility issues.
I may not have a perfect speech but I can express myself nonetheless. I can speak and I can lip-read and that's far better than if you consider the alternative. Yes, I learned sign language but I did it as a formality, not out of passion or interest. Acceptance is something I did for lack of a better choice; being deaf was never a badge of honor I wanted to wear. Speaking is something I'll always enjoy because I was born speaking.
I'm grateful it's my hearing senses that were lost and not my sight or my mobility for that matter. Those could have been worse. Then I'd have ended up a burden to my family, especially my mother. I'd never have been independent, would never have beheld my child’s beautiful face, would never have experienced the beauty of seeing. I'd have needed others to move around. I'm glad I can see, walk, express myself, work, raise my child independently, and live a fairly normal life. I'm grateful I retained the power to do all these things even if I can't hear.
Teri O'halo McMahon is a professional memorial writer and author who writes about technology, lifestyle, parenting, hearing loss, and other human interest topics.