I have this philosophy about my illness, that I’m not my illness and I’m not my body. It keeps me sane a lot of the time. It is easier to see it as something separate from me, an antagonist. It is easier to not feel complicit in all this.
I started feeling that way when I lost my hearing. I lost it in 2009, and never got it back. I have no hearing in my left ear, some in my right ear. The hearing in my right ear fluctuates. I stopped seeking technological interventions when I was accused in 2011 of Munchausen’s by a specialist and referred to a psychiatrist. The psychiatrist agreed I did not have Munchausen’s. I never tried to get a hearing aid again.
A few short weeks after the appointment with the psychiatrist, I was diagnosed with mast cell disease. “We’re not sure why, but a lot of people with this disease have trouble with their hearing,” the doctor agreed kindly. I cried when he told me. It felt so final. A tiny part of me had always hoped that once I was diagnosed, the treatment would give me back my hearing. But it didn’t, and it won’t. I am Deaf. I will be Deaf for the rest of my life.
It is impossible to describe how it felt to lose my hearing. It was like slowly bleeding with no way to stop it. There was panic and anxiety. I couldn’t focus on anything else. And then eventually, it stopped. I was damaged, and I moved on.
The thing about your hearing is that you use it for everything. I had never even noticed. Very early on in my Deaf life, I looked both ways and stepped into the street. A friend pulled me out of the way just before a car hit me. I had seen the car, but because I couldn’t hear it, my brain told me it wasn’t moving. It was a jarring realization that I used my hearing to keep me safe, and now it was gone. The whole world felt different. It felt alien.
Losing my hearing represents the first time in my life that I couldn’t make my body work through force of will. In 2009, I was having joint pain, tiredness, fevers, rashes. I had a few inaccurate diagnoses. In spite of that, I could still make my body do whatever I wanted, even it hurt. I could overcome the pain. I could not will myself to hear.
It was also the first time I had to demand accommodations. I had to tell people to look at me when they spoke. I had to get an earpiece to talk on the phone. I had to request interpreters for medical appointments. It was my introduction to self-advocating, and that has served me better in my adult life than any other quality. I am not afraid to fight.
I have adapted over the years to the point that I barely notice my Deafness. I can hear on the phone if it is quiet; I sign well enough to use a video phone. I watch the tv closed captioned, use a vibrating alarm clock and a lamp turns on in my living room when you ring my doorbell. Learning to function as a late-deafened adult was hard but not impossible.
In many ways, my hearing loss is hard to talk about. It is still a wound, one that comes raw with too much touching. The entire experience affected me and changed me in ways I could never have expected. It was a loss I felt more acutely than anything else that has been taken from me. It was the point of no return, after which I would never recover the health I had previously had. My life is divided into two epochs: before and after I lost my hearing.
But I owe a lot to my hearing loss, I think. It forced me to learn another language, to become a part of a culture I had known nothing about. I have made friends I would never have made otherwise. I found out who in my life really cared about me. It made me think differently about my health. It made me realize that deafness was not a disability, but an attribute, a facet of who I am. It made me realize that I could still have the same life I had before, if I wanted to work for it.
I recently went on high dose steroids to treat my mast cell disease. It was a treatment I had been given for my hearing loss, one that worked, but was discontinued due to terrible side effects. I woke up in the middle of the night a few months ago, and I heard a strange noise. It was sort of a soft ticking, a sound I didn’t recognize. I turned on the light and tried to locate the source. I eventually realized it was the fan. It had been so long since I had heard one that I had forgotten what it sounded like. It was like being visited by an old friend. My dosage decreased and this brief glimpse of my old life vanished. The blades spun silently now.
My life isn’t better or worse for being able to hear a fan. It is a reminder of both my damaged body and the ways I have learned to live with it.