Removing My Cochlear Implant
many other misinformed parents here in North Carolina, my parents were told that sign language would interfere with the development of speech. I started by learning a spoken language and then sign language later on. I was receiving speech therapy three times a week at the age of 3 which continued the next 14 years. My parents had me enrolled in public school from K to 12. Sign language was never used in the home and my life revolved around the importance of speech. I grew up, miraculously surviving without having access to the Deaf Community.
From three years old, I was wearing my hearing aids up until adulthood. I had it in my mind that I would be happy and do better if I had the cochlear implant. Never did I expect the journey to turn out the way it did.
Some years prior to my cochlear implant surgery in 2005, I remember attending conventions for the Deaf such as the NC Association of the Deaf conference and the National Association of the Deaf conference. In between those events, I quickly resumed to the life that I’ve always known. I really did not know anything else. Looking back, I wish I was more exposed to how greatly diverse the Deaf Community is. The resources that are available to the members of the Deaf Community are endless. Growing up, the opportunity to be a part of the Deaf Community was not presented to me as an option. In many ways, I feel cheated. If only I had Deaf peers in school and Deaf teachers, it would have made all the difference. The journey that I - not choose to embark on but was given - was a hard one. It was a long road to finding my way home.
Not deaf enough but hearing enough
You must understand, I stayed confused for years. There was a serious denial where I thought I wasn't deaf enough simply because I could communicate in a spoken language fairly well. But something was...amiss and that started a search. I've always felt disconnected. There's nothing harder than being rigorously honest with yourself. I did not want to accept reality as it was incongruous to what I believed about myself or the life I was accustomed to.
Yet I got the cochlear implant. And, I was still convincing myself that I was happy and doing better because I was hearing enough.
Before the implant, my eyes were always tired from straining to read lips while wearing the hearing aids. The implant enhanced my hearing but it still was not a cure. Before then, I had never experienced such mental exhaustion in my life. Even years after having the implant, I still could not get used to the change. I still had to have my daily afternoon nap. What the implant did for me, no...what it did to me - the mechanical, electrical stimulation in my head was constant. I felt like a hummingbird on crack. Or, like a car engine that runs 125 miles per hour and never quits. My brain would constantly spin like a slot machine for many hours straight. I was always in a mental fog.
A whole host of health issues gradually showed up after the implant surgery, from having severe migraines to occasional blurry vision. There were mornings where I’d wake up in sheer pain. The worst was the muscle spasms which occurred 2, 3 times a week. The pain was excruciating. From time to time, the soreness of the skin would come from wearing the intact device from the inside and the magnetic device on the outside clamping together with the skin in between.
What most people don't know is this - once the device is turned on, it starts out with a screeching sound every single time. At times, I could not sleep at nights comfortably where my brain doesn’t shut off from reminding myself to not sleep on one side due to discomfort where my implant was for an extended period of time. The pressure against my skull would feel like it was dented in and my jaw muscles would tighten up to the point where I nearly could not open my mouth in the morning. Have you ever tried opening your jaws with your bare hands? The aftermath was even more exhausting - dealing with severe anxiety and depression. It worn me down.
Yet I kept visiting doctors and specialists. I could feel that the implant was losing its position in my head. The surgeons saw that the implant had moved south to directly behind my ear instead of above my ear in which it tilted sideways. I could feel it poking inside from the behind. Discussions went back and forth about having it surgically removed and re-planted.
A new perspective to life
In between the struggles, I found hope and joy in my newfound circle of friends who prided themselves on being culturally Deaf. Even the notion of it at the time seemed so far-fetched to me but I felt right at home. I just didn't understand what it meant and how important it was - this idea of establishing a Deaf Identity by learning to be comfortable in my Deaf skin. It meant a 180 degree mind-set shift.
September 1, 2019 - I decided that I will no longer be silenced. I wanted people to know what happened to me. I posted a video log via social media, sharing my raw experience about the removal of the cochlear implant surgery three months prior. In my vlog, I explained how I came to the decision of having the implant removed and the great impact that it has had made for me. My vlog immediately went viral. So many people came forward, sharing similar stories. I was astounded that there were other testimonies. I had no idea that I wasn't alone. I was no longer in denial as I had time to alter my perception of myself.
Despite the long list of health problems, my health insurance would not cover the removal of the implant. I paid that out of my pocket and it was worth every penny. Most of the symptoms have subsided although I am still in recovery. Going from experiencing intense daily pain to occasional pain is an immense relief. I would do the cochlear implant removal surgery all over again in a heartbeat.
In the emotional health sense, I have known refuge since I've found my place in the Deaf Community. Embracing myself as a culturally Deaf person has meant feeling confident in the knowledge of who I am and what I want. I have found my path to contentment and a great sense of belonging. I am home.
By Rachel Tubiolo-Brafford
