This is going to be the first of many posts. I’ve decided to write about my cochlear implant journey, partly so I can help others who, like me, are always looking for answers and anecdotes, and partly for my own sanity, because this has been an emotional and somewhat gutting experience. To write it out, well, I’m hoping for some kind of catharsis. That maybe the Sword of Damocles will ease off. (I cuss a lot but will contain myself for these posts. For those with a sailor’s mouth and mind, imagine another word starting with “f” and ending in “k” in lieu of “ease.” For those who don’t cuss, disregard.) I’ll try to add some humor too. What’s tragedy without comedy, after all?
Some background: my hearing loss is bilateral sensorineural. My mom has the same loss, so does my sister. Mom wears hearing aids, although she’s a cochlear implant candidate, I’m sure. My sister has a cochlear implant in her left ear, and I wear hearing aids in both ears. We are all “late-deafened.”
I feel fortunate that until my early 30s, I had perfect hearing. I could hear leaves rustling, my first whispered “I love you,” and someone speaking to me from another room. Now, you can stand right in front of me, and depending on your tone, your volume, male/female/child, I might not hear you at all. Well, I’ll hear you, because I still hear sound with my hearing aids in, and even some without. But my speech discrimination is so poor in my right ear it’s like listening to Charlie Brown’s parents day in and day out.
I’ve prided myself on hanging on to my hearing. As recently as 5 months ago, I was doing okay. But then I noticed my right hearing aid was acting up. Indeed, it was broken. But when I got it back from being repaired, it didn’t seem that much better. My hearing had gone down. Way down. My doctor gave me prednisone which helped. But then I got sick and it wiped out what I had gained back. Another dose of prednisone helped again but gave me tinnitus in my left ear. It now sounds like a snake charmer is playing a clarinet in my ear canal.
The phone is nearly impossible without captions. Restaurants or coffee shops are my worst nightmare. Forget about hardwood floors and high ceilings. And I now realize that for years I’ve been living in a low-level state of constant fear and anxiety, never knowing if I’ll hear someone or not. I used to be the person with the snappy comeback. Now, it’s a victory if I hear the joke at all.
More background: I swore I would never get a cochlear implant. The main reason being, when I used a device called the Pocketalker, I had near-perfect hearing again. It was so incredible I found a doctor who agreed to test me. My speech discrimination jumped from 0% unaided to 95%. It was astounding, and I went in search of a similar device that would be wireless. I was excited, hopeful, even cocky. See, doctors? I have found a way to hear without you drilling into my skull. Ha!
There is something about the FM frequency that works startling well for severe-profound hearing loss. But when I told doctors this, they shrugged. And as of right now, there is no such wireless device. Bluetooth does not share that frequency, or what I term “magical unicorn frequency.” The doctor who tested me said he thought this was a fleeting moment because my hearing would continue to deteriorate, and to some degree, he was right. I still hear amazingly well with the left ear using the Pocketalker. The right ear needs a bump in volume, and it’s still pretty distant and tinny.
So now I’m faced with the inevitable, and I’ve decided to move forward, although I’m completely terrified. I have tinnitus and suffer from brief bouts of vertigo, both which can worsen with an implant. And if you think hearing aids look dreadful, the implant is worse. Luckily, I have been blessed with a head of hair that makes many a grown man cry. So in six weeks, I’ll go to my first of two consults along with getting an MRI.
My sci-fi-loving husband promised me bots are sexy. I hope so. But what I really hope is that I’ll hear well again in my right ear. That the fear and anxiety will diminish or disappear altogether. And that instead of saying, “What?” all the time, I’ll once again have a snappy comeback.