My artwork accompanies an interview with Elizabeth Gilbert in Spirituality and Health magazine's Nov/Dec 2015 issue.
I gave a speech at Spirit United Church on Nov 15th. This is the story I shared:
My name is Liza Sylvestre. I’m 32 years old and I work as an artist professionally. At the moment I am also 29 weeks pregnant with my first child and I am very aware of the transition of my thought process, my body, and my life as I become a mother. I also grew up loosing my hearing. Although right now I may seem to function (and mostly sound) like a normal hearing person, I am medically deaf. I am completely dependent on this little device behind my ear, which is called a cochlear implant. When my battery dies, or a when a small part of my implant is in need of repair - I’m immediately plunged into deafness.
My parents first discovered that I was loosing my hearing when I was 6 years old. At that time I had only a mild hearing loss affecting the very highest of pitches - things like birds singing or whistling. It took us a while to figure out that my hearing loss was actually a progressive one, and it took us even longer to figure out that it was my own immune system that was causing this loss.
The anatomy of the human ear is amazing. Beyond your ear drum there is this really beautifully shaped crevice called the cochlea. It looks exactly like a snail shell. The cochlea is lined with hundreds of thousands of microscopic hair follicles. Each one of these hair follicles responds to a certain pitch of sound from high to low. When a sound wave, or frequency, enters the cochlea the corresponding hair follicle will also wave and that movement sends a signal to your audial nerve and then your brain. When you listen to really loud music these little hair follicles literally get flattened by the force of that music. Eventually, most of them perk back up and function again but several hundred of them will stay trampled and flattened and non functional - which is how you loose your hearing going to lots and lots of rock concerts.
Now, in my case, my own immune system was killing off these amazing little hair follicles. This discovery was followed by several years of unsuccessful medical intervention - I was given medications to surpress my immune system, I had biopsies to make sure this defect of my body wasn’t affecting any of my organs, I had vials and vials of blood drawn and tested, and I had lots and lots of appointments with immunologists, ENT docs and of course monthly (and sometimes weekly) audiogram tests to chart and record everything.
My family and I spent a lot of time at the doctor’s office.
Looking back - I can see my parents desperately fighting the inevitable. It was a really emotional time, and I was very aware of the effect that my medical problem was having on my entire family. At the same time it was hard for me to grasp what was really going on. What does it mean to be loosing ones hearing? How does an elementary school aged person understand something like that? What can you do to make your mom and dad happy again? What can you do to make sure your younger sister isn’t bored while you wait for your test results? How do you prepare? When would this “deafness thing” happen anyway? What would the world be like without sound? How would I communicate with my family and friends? How would I communicate with strangers? How would I be able to work? How much does one really need their hearing anyway?
I still don’t necessarily have the answers to any of these questions.
What I do know is this:
- There are far worse things that can happen to a person than the loss of their hearing. - I’ve never fought cancer or any other life threatening illness, I’ve never witnessed, or lived with extreme suffering. I grew up with supportive parents and doctors who wanted to “help”, even if they couldn’t. Overall, I’ve had it pretty good.
- Some things are going to happen no matter what you attempt to do to prevent them from happening. The best doctors in the world, and the most expensive medications and treatments were not going to stop me from loosing my hearing.
- Growing up beneath the shadow cast by my impending deafness has made me sensitive to the world and to others. I am aware of my surroundings in a way that I wouldn’t be if I were a normal hearing person. I sense other’s discomfort, I know who is listening and who is not, I know when people feel excluded. I can read lips from across the room - a tool my classmates utilized in the lunch room to unearth the latest gossip. I also trust and appreciate people who slow down enough to actually listen, as opposed to just going through the motions of communicating.
- Language equals culture. When you grow up as a hard of hearing person in a hearing family, in a hearing school, and in a hearing world, it is easy to feel alone and excluded. I do know American Sign Language but I don’t really have anyone in my life to use it with. What good is a language if it isn’t shared? When I do hang out with deaf people I feel like I’m visiting another country. Although there are exceptions, and times when I do make connections with deaf people - overall I don’t belong to the deaf world any more than I belong to a room full of football players.
I grew up with one “solution” in mind - my family and doctors drew up a plan - when my hearing got bad enough I would just get a cochlear implant. It wasn’t exactly presented as “problem solver”, I knew that there was a good chance that everyone in my life would sound like Daffy Duck after receiving my implant, because that was exactly how post-implant sound was described by my doctors. But the overall consensus was that cochlear implants were what you got when you became deaf. It was your lifeline to the world and all of the people you know that live in the world. And so in 2003 I bit the bullet and underwent a 4 hour long surgery and woke up with a cochlear implant.
I love my cochlear implant. I love that in certain settings, with minimal background noise, and a voice that is familiar to me I can communicate almost like a normal hearing person. But when one signs up for a cochlear implant they are also signing up for a lot of work. Make no mistake - people with cochlear implants are still profoundly hard of hearing and when you are hard of hearing attempting to function in a hearing world the weight of communication always lies on your shoulders. It’s always going to be easier for the other person. Always. So in a very real way living life with a cochlear implant is like signing up for a daily battle. It’s exhausting. Communication is mentally exhausting. At the end of the day someone with a hearing loss has certainly worked harder to understand and get through their day than a normal hearing person.
Don’t get me wrong, like I said I love my cochlear implant but I often wonder if I would have a more whole sense of belonging if I had not gotten it. In a way a cochlear implant is like a big band aid - it enforces a certain type of communication that exists only in the hearing world and it allows you to just hang on to that world. But in many ways it doesn’t allow one to deal with their deafness, because they just continue communicating they way they always have. It also feels confusing to the person receiving the cochlear implant - are they a deaf person or a hearing person? If they are a hearing person, why is it so hard to communicate? And if they are a deaf person, why is it so hard to communicate? And where are all of these deaf people to communicate with?
If I hadn’t received a cochlear implant then I would be 100% a deaf person and I would use American Sign Language with ease and I would have people to use that language with. Maybe even my parents would have picked it up! I want you to think about this next time you see one of those emotionally charged youtube videos that circulate the web. The ones that show people’s cochlear implants being turned on for the first time. Those videos upset me because they paint a picture about cochlear implants as being miraculous problem solvers. Hearing a sound with a cochlear implant is very very different from hearing enough sounds to put together a word or a sentence. The reality is more complicated and a lot more work.