After a long six months wait, I learned that my submission didn’t make the longlist. It was my first submission, so I am hardly surprised, but a tad disappointed. Only a handful of people have seen this during the writing process, thanks to them, I put together a story I felt comfortable submitting.
Here it is:
Age 17: When I was visiting my mother in Chicago we watched a news piece one evening. The news segment was about doctors who were suggesting that one day it might be possible to cure deafness by replacing the entire cochlea. The cochlea is located in the inner ear and is a conch-like shape lined with hair cells that transmit sound to the brain. My cochlea is missing some of these hair cells, causing my deafness.
I remember her asking me, “If they could replace your cochlea, and give you full hearing, would you do it?”
With zero hesitation I said, “No”.
The look on my mother’s face was of bewilderment, disbelief, and perhaps a little disappointment.
“Why not?” she then asked.
“I am doing just fine as I am. I think that I will likely be in my senior years tottering around with a walker in a nursing home when they achieve that, and it might not even be during my lifetime. I don’t think my needs will ever change to the point where I’d require such a drastic procedure, or even want to.”
I could not imagine undergoing such a monumental surgery. I am Deaf, but it didn’t make me defective, inhuman, or incapable of handling my life like anyone else in the world around me.
Despite my reasoning, my mother didn’t understand and it didn’t matter it might not ever be possible. Nor was I interested in the cochlear implant, which was a very new technology, and in its infancy medically. (The first cochlear implant became available in 1984.)
“I don’t understand why you wouldn’t want a chance to gain full hearing. It would improve your life so much” she said with a tinge of disappointment.
It was the only time we spoke of it.
Age 32: I was now a mother, with my own perfect little daughter who is hearing. I still wore bilateral hearing aids but the pressures of life were getting to me. My ability to use the phone was slowly declining, and I was starting to struggle, even during face-to-face conversations. I thought my hearing was getting worse, so I made an appointment with my audiologist.
“Your hearing hasn’t changed, but your speech comprehension has a little. What would you think about getting a cochlear implant? I think you’d do really well with it. Their criteria is changing and you might qualify now.”
Oh the irony.
“I’m not sure” I replied. “I trust your opinions highly, you’ve never steered me wrong. Gord [my then husband] had a rough time with the recovery, he was dizzy for a long time, and he isn’t using it as much right now.”
“It would be different for you, you have always done well with the hearing aids I chose for you. You have a great potential to gain an almost normal hearing with it, with hard work, and your personality.” she replied.
Just fifteen years after declaring that I was fine as I was, there I sat talking with my audiologist about getting tested to see if I met the requirements for a cochlear implant. My husband at the time had received his in 1996 and I had seen first hand his recovery from the surgery. It wasn’t pretty. He had a rough time physically and his staples made his head look like a baseball. The scar now looks like an upside down Nike swoosh when his hair is short. I left the appointment conflicted.
I decided there was no harm in testing, and in getting information about what was available. After all, I thought, knowledge is power. I went to Ottawa and underwent the hearing and speech comprehension tests. I passed the test, or, more accurately, I failed. Failed because I tested too high on the comprehension scale. I went home upset. That was ironic because while I was coping pretty well, I was still upset at not meeting the requirements. My parents and husband at the time didn’t understand it either.
Age 38: When I said I was testing for the cochlear implant, my mother threw the words I had spoken when I was seventeen back at me.
“I thought you said you would never consider medical intervention.”
Gulp. I certainly set myself up for that hadn’t I?
Sheepishly, I replied, “I know I said that. I am just seeing if I qualify. I don’t have to do it right then if I do, I can wait as long as I want to until I am ready.”
The day I qualified for the cochlear implant I learned that my speech comprehension had gone from 79% accuracy to 64% in six years.
“What?” I said as I sat there dismayed, yet hardly surprised.
My audiologist explained, “It would have been lower if it wasn’t for the level of concentration I saw you exhibiting during the test. You worked hard for that.”
I went home that day armed with different brochures, and devastated that my speech comprehension had changed so drastically. When I said I had qualified, my mother was ecstatic, as was my father. For days after that appointment, I went through a myriad of emotions. I cried, I raged, I waffled.
“Should I get the cochlear implant?” I asked my ex-husband.
“I can’t answer that” he replied. “You know why I rarely use it now. You know how dizzy I was afterwards, but then again, maybe it is different now and will be better for you. I wish I had waited longer.”
A friend with a cochlear implant said, “Do it. It has helped me so much. You’ll do well with it.”
My parents were, of course, completely for it, believing that I’d benefit greatly from it. I was scared of the unknown, of the surgery, of it not working and it being for naught. My boyfriend was supportive, but said it was my decision and refused to even give an opinion.
Then they emailed me a surgery date, asking: did I want to do it that fall? I emailed back saying I thought I was pregnant, and would do it in the spring if I wasn’t. It turned out I wasn’t pregnant, but two months later I was expecting my third, so my surgery was held off until I was ready. I had already done the balance tests, CT scan and MRI, so all I had to do was let them know when I wanted to go ahead.
Age 40: The surgery was set for April 2012. I vacillated between fear and excitement. I started writing a blog to chronicle my experience because I needed an outlet and a way to express my thoughts. It became the vehicle to explain to my family and friends what was happening in my head. To explain what the surgery entailed, and even things I had never told anyone about my life as a Deaf person.
I nearly backed out of the surgery, even as I was wheeled in to the operating room. My audiologist was there, to my surprise.
“Are you ready? I will be testing to ensure the implant works before they close you up.”
I nodded, but right up until the moment the anesthesiologist placed the mask on me to put me to sleep, I was close to sitting up and saying, “STOP!” I was terrified beyond belief, but I couldn’t speak up as something was holding me back.
My mother passed in February 2011, before Wyatt was born. She never got to see the changes I’ve undergone since then or to support me through my subsequent grief over the loss of my residual hearing in that ear. (I had known I would lose it, but was unprepared for the emotional fallout).
It’s ironic, that twenty-five years after that news segment, after making such a confident declaration, that I now have a cochlear implant. It is not the medical cure for my Deafness, as I am still Deaf when it isn’t activated. It is, however, the right tool for me to gain access to the hearing world. It is proving to enrich all aspects of my life, particularly in my role as mother to my three children, and especially to my youngest, who, at two and a half, is benefitting from my improving speech comprehension.
The news is now filled with reports of a possible stem cell cure for Deafness, which still has a way to go, but shows promise. There are also articles and reports of developing an internal cochlear prosthetic, replacing the cochlea. These things may not happen in my lifetime, but if they do, the possibility excites me. Even if I am eighty years old tottering around a nursing home with a walker, I just might consider going for it.
The irony of this isn’t lost on me.
Never say never.
Here are the thirty five who made the list, and awaiting the five finalists.