Remembering

I did it. I got back into the pool to swim laps. It was the first time since that fateful day last July when I broke my ankle. Between ankle healing, an exhausting schedule at school, a perpetual sinus infection, SSHL and the ensuing Microwick procedure, a couple of short trips, and sinus surgery, I just couldn't find enough energy to haul my lazy arse to the gym where I could share my swim with the half-dozen splishy-splashy lane jumpers who think swimming will be their answer to fitness. I hate the gym pool, but it's a necessary evil until my backyard pool warms enough each season.

I began swimming a few years ago as an alternative to fitness when my knees and ankles began to protest too much -- partly from age and partly from injury and scarring. I took to it rather begrudgingly, and I counted my laps and time precisely to the desired amount. I don't know exactly when that changed for me. Somewhere along the way, swimming became my muse. It was serendipity.

A sweet lady at the gym once told me I had a lovely stroke. She had no idea. When I am gliding along with the water rushing through my fingers, I find myself almost transported into another plane -- a hypnotic transformation where nothing in the world matters except my metered breath and stroke; my muscles and mind working together; my thoughts relaxing into a world of my making; a serene and solitary place for focusing energy and strength into my body, my soul.

I needed to swim.

The weather was beautiful and the pool was at that perfect temperature between being pleasantly refreshing and not having to "get used to it." I donned my mini-fins, swim cap, and kick board and decided to start off slow and leisurely, thinking I should ease myself back into it. I cleared my first hundred meters in a snap, so I ditched the kick board for my goggles and finished in free style.

Swimming 'almost deaf' was different than before. The quiet, muffled trickling of the water splashing past my ears and the steady rhythm of my breathing seemed amplified a thousand-fold inside my head -- pulsing and pressing me forward in a soul-weariness that discouraged my siren song. I didn't like it. I pushed past the despondence and the too-tired muscle twitches of the first five hundred and neared the thousand meter mark in just over a half hour. I decided to stop there - not because I needed to, but because I knew I would be paying for it later in sore muscles and sunburned thighs. I stepped out of the pool all wobbly and wet and smelling of chlorine. I remembered the smell of chlorine, and I remembered how much I loved it. I would swim again tomorrow.

And then I wondered -- will my ear be able to remember what it's like to hear as much as my nose remembered to smell? What sounds will it remember it loved and want to hear again? I wonder. And I hope.

The Hostage

I knew the road to cochlear implant wouldn't be smooth. Yesterday, the office manager at my otologist's office called to let me know that my insurance carrier had denied the request for candidacy evaluation testing for a cochlear implant. Their reason was that my doctor stated that I was satisfied with my hearing aid results. Apparently, because I chose to try hearing aids first, I am satisfied with them. They ruled that my hearing aid results were "acceptable." I wonder if I had chosen cochlear implant from the beginning, if I would be facing this issue at all.

The term 'acceptable' is a multi-faceted word. According to my dictionary, acceptable may mean capable or worthy of being accepted; pleasing to the receiver; satisfactory; agreeable; welcome; meeting only minimum requirements; barely adequate; or capable of being endured.

I wonder which term my insurance carrier wishes to convey. Is it 'acceptable' that I am profoundly deaf in one ear and must rely on the other ear to hear everything the world throws at me? Is it 'capable' that I miss a third of conversation and must ask friends and family to repeat themselves over and over? Is it 'pleasing' that I cannot hear bikers and other runners approach me from behind when I am on the trail? Is it 'adequate' that I cannot use the drive-in feature of restaurants or pharmacies because my deaf ear faces out? Is it 'agreeble' that I must use closed captioning to understand television and movies? Is it 'satisfactory' that I avoid social events and venues that are noisy and confusing for me? Is it 'adequate' that I can no longer hear the students I teach without great effort and external amplification? Is it 'welcome' that I worry constantly that another SSHL will take the hearing of my better ear as suddenly and profoundly as my left? Is it 'worthy' to endure because my insurance company has made an impersonal decision about what I should be willing to accept and endure as a result of my hearing loss when a cochlear implant could significantly improve my quality of life?

I think not. If they mean that my hearing aids are 'barely adequate' when they say they are 'acceptable', then I suppose they are right. They are minimally adequate, and they are better than nothing. But that's not good enough for me.

I will not be held hostage by a company whose main objective is to protect their pockets and determine what is "acceptable" for me. They don't know me. We have appealed.

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.