Hearing Elmo welcomes, Wendi Tirabassi Kast, fellow blogger and cochlear implant buddy. Wendi writes at “Sudden Silence” (http://suddensilence.wordpress.com/). I have been a big fan of Wendi for years now. She writes about LIFE – life with hearing loss and cochlear implants. Life with other kinds of struggles – but her posts remind me that this is LIFE. Her positive attitude and quirky sense of humor connects with me – and I think will with you! You should check out her blog – she frequently updates and every read is worth the time to check in!
In 1993, when I was 28 years old, I lost all of the hearing in my right ear.
I grew up with a hearing loss that was discovered when I was four years old. I never expected to lose more hearing; nobody knew why I lost some of my hearing to begin with, but a high fever from roseola was what we suspected. (Knowing what I know now, I would also suspect the antibiotics used to treat it back in the mid-1960s.) I always thought my hearing would stay the same; in fact, I never really gave my hearing (or lack thereof) much thought at all. I treated my hearing aid like I did my glasses … just an aid to help me with one of my senses. I certainly never thought I might lose all of my sight some day, so why would I think I might lose all of my hearing?
Finding out that all of my hearing had vanished virtually overnight, for no known reason, rocked me to my core. I was absolutely devastated and terrified. Suddenly a whole host of worries was presented to me, including the possibility of going completely deaf someday. I woke up terrified every morning, wondering if I would lose the rest of my hearing that day. I lived in the hearing world, not the Deaf world. I didn’t know sign language; none of my family or friends knew it.
I spent two weeks without my hearing aid, because I wore the aid in my right ear and it was suddenly unaidable. They made an ear mold for my left ear and ordered analog bi-CROS hearing aids for me. While I waited the two weeks for my left ear mold to be completed, I had to navigate my hearing world using nothing but the hearing that remained in my left ear. I did word processing for an industrial parts supply company; I could still type and do my job, but communicating with my coworkers was very, very difficult.
When my new ear mold and hearing aids were fitted, I was weak with relief. Things sounded normal again. The bi-CROS aids picked up sounds from my now-deaf right side and transmitted them to the left. My hearing remained stable; I slowly began to stop worrying and started taking my new level of hearing for granted again. I mean, this couldn’t happen to the same person twice, right?
When I realized the hearing in my left ear was getting a little strange, in early April 2008, I chalked it up to an illness. It was that same kind of faint ‘hearing things from the bottom of a tunnel’ type of hearing that I get when I’m fighting a fever or virus of some kind. I wasn’t sick but still assumed I was on the verge of something. Well, I was … but I was on the verge of total, profound deafness, not a virus.
My husband scheduled an appointment with my otolaryngologist. The day before my appointment, I woke up and realized I was completely deaf. I could not hear anything. My teenage children were leaving for school and I tried to keep it together until they left, but I was so scared. I burst into tears in front of them, wailing to my husband, “I don’t want to be deaf! I can’t believe I’ll never hear you guys talking to me again!” I was completely hysterical.
Well, I gave in and let myself grieve. It was only a few days before I realized I could only do so much crying and feeling sorry for myself. I was still sad and scared, and I used my blog to express my feelings during this time. But I also decided I had to move on and decide how I was going to live my life as a deaf woman.
My first concern was communicating with my family. I had remarried in 2002 and my husband knew some sign language, so he began teaching signs to me and the kids. We rented DVDs, bought books, and learned to fingerspell the alphabet. We never did learn ASL but we learned enough signs to communicate and get the message across. My speech reading skills kicked into high gear, and these really saved me. My family was very, very patient – they made sure to face me, to speak at a rate that was easy for me to lip read, and would repeat words or fingerspell until I got it all. They never said, “Oh never mind” or “It’s not important.” They knew I wanted to be part of the conversation, important or not.
After a few big scares, my husband put up mirrors around my desk so I could see if someone was approaching from behind. (It’s pretty terrifying to suddenly feel a hand on your shoulder when you aren’t expecting it!) We ordered a free TTY from the state and got a flashing light for the phone. I used online relay for phone calls as well. I already had a bed shaker alarm clock and, of course, we were already using captions on the TV. (My husband has a hearing loss as well so we both use these accommodations.)
I found out that I qualified for cochlear implants, and began the process of testing and insurance approval. My hearing tests were easy; I sat in the soundproof booth, listening to nothing, until they opened the doors and said I was done. I asked if I could get a cochlear implant in each ear at the same surgery. Although it wasn’t done very often, they said it was no problem as long as my insurance approved it … which they did. The whole process was quick: I had my testing in May, my insurance approval in early June, and my simultaneous bilateral surgery was on July 22, 2008.
On August 20, 2008, the hearing world came back to me. The sounds that came into my brain that day were nothing like anything I’d ever heard before … but it was sound and I was speechless with delight. If someone had told me back in 1993 that someday I would have little computers in my head, and I would hear sound again in an ear that hadn’t worked since before 1968, I would’ve just laughed.
As my brain learned how to hear with my new cochlear implants, my tinnitus faded away to nothing. Every day, I asked my family to help me identify what I was hearing until finally I could identify sounds on my own. With each mapping, things sounded more and more the way I remembered them. I heard the voices of my husband and children, music, my cats meowing and my dog barking. One day, as I was leaving the audiologist’s office, somebody asked me for directions. They were behind me, and I heard them clearly without lip reading!
It’s been over five years now and I never, ever take what I hear for granted. It’s been gratifying to know that I can deal with my deafness even if something happens to my CIs someday. But every day that I wake up, put on my processors and hear the rush of sounds once again, I am thankful, amazed and humbled.
One thought on “When Lightening Strikes TWICE”
Denise, thanks for the very sweet intro! I’m so glad we’ve gotten to know each other online, and I can’t wait for the day when we get to meet in person … I know it will happen someday (hopefully soon)!