Monday, June 24, 2013

A Rare Goose

Last August, I experienced deafness in my left ear and lost about two-thirds of my hearing in my right ear in an instant. I had suffered sudden sensorineural hearing loss, a disorder that affects approximately 4000 people in America each year. Most people aren't even aware that they have experienced SSHL because the loss is too small to notice or they chalk it up as "getting older." For the few who seek medical attention, it is a rare and disturbing event that has mostly unknown causes. About 90% of SSHL cases are unilateral, or affect only one ear. The other 10% experience a bilateral loss, like me. Most suffer minor to moderate loss of hearing. A few are deafened, like me. I am a rare goose, indeed.

Last Monday, I had another event. I had been experiencing what I thought was the start of an ear infection. After showering that morning, I put some swimmer's ear drops into my right ear to remove the moisture that I thought was compounding the possible infection. After I put the drops in, I heard a loud, screeching squeal followed by a loud POP in my ear. The pain was intense, but immediately relieved by the pop. I noticed that I could taste the alcohol drops in the back of my mouth. My tongue grew numb, and I thought I had ruptured my eardrum and the drops had leaked into my mouth, dulling my tongue. I was aware that my hearing was diminished, which, of course, happens when an eardrum is ruptured, right? I panicked. I called my otologist's office right away. I'm sure the nurse thought I was a crazy, freaked-out woman. (An otologist is a doctor who specializes in hearing loss and disorders of the ear.)

"I know this is not what you want to hear," my doctor says. "Your eardrum is not ruptured and I can't see anything that is wrong with your ear at all. Your hearing test shows that you've had a significant decline in your speech discrimination, however, and that can only be explained by another sudden sensorineural hearing loss event. I'm sorry." Speech discrimination is what makes conversation possible. Without it, vocal sounds are heard, but take on a garbled quality. I had dropped over 25% in my ability to hear words! He went on to talk about some other things, most of which I had to have him repeat because I was reeling from the thought of not being able to understand when people talk to me.

"You've been dealt a sh**** hand, I know," he says. (He tells it like it is.) He said he's only had a handful of patients who've been deafened by SSHL and even fewer who've had bilateral loss. The rare goose thing again.

"The symptoms you've told me about are classic SSHL," he says. The tongue thing is actually a facial nerve that runs near the inner ear and is sometimes traumatized by the event. It will most likely get better with time, he tells me, but I ask him to please not give me any odds on that. "I'm not so good with odds," I say. (It has gotten better, I can tell, but it's not back to normal yet.)

It hastens my need for a cochlear implant. I've been wearing a hearing aid for nine months with meager results, so I knew that I would eventually be faced with the decision to implant my ear. I just never expected it to occur so soon. "If I sound urgent, it's because I am," he says. He wants me implanted by September. "October, at the latest," he says, shaking his finger at me. Another SSHL event could leave me totally deaf, and he doesn't want that.

So here I am today, flush with high-dose steroids and crossing my fingers for some miracle that could restore my hearing, or at the very least, stop the onslaught of this SSHL attack and keep me from losing any more. The only known treatment for SSHL is large amounts of steroids. It's believed that SSHL is an attack on the immune system of the body, so steroids are used to boost the immune system and reduce any inflammation in the inner ear. The steroids can perk up the cochlear hairs that were slightly damaged and have actually restored full or partial hearing in many patients. A few have no improvement at all. My left ear was the latter during my first event. (Can you hear the goose honking?) I am hoping for better results for my right ear. 

A cochlear implant isn't a magic cure for my deafness. It is only a tool for helping me overcome communication problems I face as a result of my deafness in a world that requires hearing everywhere you go. I will have to have many, many hours of rehabilitation and therapy to teach my brain how to interpret the input the implant will give it. It will be exhausting, and trying, and I know there will be many days I will question if it was even worth it.

I am being propelled into unknown territory by forces I cannot control. It's scary. I'm angry. I'm worried. I'm overwhelmed. I'm lost. I have to trust that my medical team will guide me safely and faithfully through this. I am surrounded by friends and family who are empathetic, caring, and supportive. My husband and daughters have shown great comfort and compassion. 

I will persevere. Not because I want to, but because I have to. It's the hand I've been dealt, as my doctor said. And I'm not really one to give up. Never was. This is just not the place I ever imagined I would be in my life. My life journey never included this path - this trial - for myself. But I will persevere, and I will prevail, mostly because of the wonderful people in my life and my faith in God, and by things greater than I can humanly see or hear or imagine. 

So on I go, walking the road less traveled. Or maybe I will fly. I am a goose, after all.


  1. I can't imagine what this must be like for you. Just know that your friends are here and that we love you and will do what we can to support and care for you. We'll weep when you weep and rejoice when you rejoice. And in between we'll still call you a goose. ;)

  2. Bonnie's journey inspires me. She is courageous, and I learn from her a great deal about how to live this life of ours.

  3. A lovely entry Bonnie, thanks for sharing! I look forward to reading more about your experiences as you start out on this new journey. I'm old hat at being deaf (39+ years) but new to CI! (implanted in January this year). Good luck with everything.