The Price I Paid

It hit me square in the face during lunch with a colleague.

I’d given up so much to my hearing disability. Backed away from projects, steered clear of complex meetings, claimed I was too busy to work with anyone new. “I’m sorry but I’m not taking on any additional work right now because of other obligations.” How many times had I said that? Dozens. The consultant who would never turn down work became one who rarely accepted any. The customer had to be familiar, trustworthy, vetted, if you will, to be able to accommodate my limitations. Hearing aids helped but not a lot. My issue was more complex than volume. My brain couldn’t piece together what my ears heard.

I convinced myself that the humbling that comes with a disability would be good for my personality. It was time, considering my age, to tone it down, be more measured, let others move to the front, that’s what I told myself. But I was hiding and then I was hiding the fact that I was hiding by professing to love my withdrawal from the fray. What I loved was being safe from the humiliation that came from not hearing an important discussion, not understanding a question directed to me, being completely off the mark in a comment because I’d misinterpreted what was being said. I was very open about my disability, joking about it, deciding it was my mission to educate others about hearing loss. But at the same time, I headed for the hills. I had to. It was a survival thing.

Get me out of here. Let me be where I can just listen to the sounds in my own head.

I argued with my husband the other day when he called me unsociable.

“What? I’m the chattiest person in the world!”

“Maybe you are now but for years you never wanted to go anywhere if there would be people you had to talk to.”

It was true. I’d only wanted to talk to him. I could, somehow, miraculously, always hear him. It helped that he’d ginned up a special sign language – just between the two of us. We had a great system. He was right. I was unsociable. I hated being with most other people. I can remember entire dinners with groups of people where I couldn’t understand a single word anyone said unless my husband, pretty loudly, repeated it for me. It was like I was visiting from a foreign country and didn’t know a word of English.

Today wasn’t the first time I realized that important things were going on in my professional world without me. I’d taken myself out of the game so how could I be surprised new players had shown up. But it doesn’t feel right anymore to be on a permanent bench or, worse, high in the bleachers.

Over a year ago, I got a cochlear implant. Basically, this means I have a completely artificial, electronic ear. The receiver ‘hears’ sounds, transmits the sounds to electrodes in my cochlea which then sends the signals on to my brain. After months of adjustment and fine tuning, it means that my hearing comprehension has gone from around 20% of spoken words to over 90%. Not everywhere, not with all voices. Deep male voices are a problem. Movies can be challenging. But the contrast with my pre-cochlear implant life is incredible.

Do I get to reclaim my old self? Who is my old self? More to the point, who is my new self? How do I stop thinking of myself as disabled? Do I just tap people on the shoulder and say, “Hey, it’s Jan, I can hear now.” Because you know if I do that, there’s going to be all kinds of expectations, people thinking I can do things.

It could change everything.

Big Life Small Life

By the time I got my cochlear implant late last fall, my professional and social life had become a shadow of its former self.

Severe hearing loss so constricted my communication that I could only relax when I was alone. After all, I could still hear myself think. So I found ways to be alone, work alone, retreat. And who could blame me? The risks of not hearing correctly, especially in a professional setting but with family as well, were enormous. My strategy was to minimize risk, protect myself, shrink my life. Be my own lonely flower.


Then the cochlear implant happened, the surgery, the implant, the receiver, the programming, things getting louder and louder, more discernible by the day until I can go to lunch in a noisy restaurant and I can have a conversation with a friend without guessing what he is saying and hoping I’m right.

What an incredible thing!

I could have a big life again. I could re-inflate, re-hydrate, expand, enlarge, unfold and blossom. After all, I just got handed my big life back. What would be the excuse for staying small?

I’ve been thinking a lot about this. This will sound strange but I think it’s true. A person makes a new life when they have a disability and it can become oddly precious. Oh, it’s not the accommodations that make a disability precious, it’s the recreation of oneself that a disability requires. It’s learning to separate who one is as a human being from poorly functioning ears or eyes or legs and then creating a new identity that doesn’t include perfect hearing or 20/20 eyesight or legs that can run a marathon.

It took me years but I finally ended up liking myself with a disability. I taught myself to do without knowing what was going on around me; I lived in my own space, heard only what I made an intentional effort to hear, lived the ‘life of the mind,’ my mind. I took to regarding myself as just a ‘person in the world.’ I just wanted to be a person in the world. Intact. Moving through and beyond hearing people, living in my tiny house with soundproof walls. It was my way of coping, my way of keeping my integrity.

But now I need to let the small life go. It’s time to be a person in a world that has other people. I think I need to make myself a big life again.



The Daily Post: Pensive

Today at the Beach

Red's Wrap

Today at the beach, I saw something that made me glad and grateful and pretty right with the world.

A young woman, her husband, their little boy, who was maybe three or four years old, and their little white dog on a leash were heading to the shore. To get there, they had to walk through a couple hundred yards of soft sand. As we walked behind them, I wondered if the woman would be able to manage walking in the sand because she had a very visible disability, was able to walk but slowly and very deliberately, and used a cane to stay steady.

As we passed them, I saw out of the corner of my eye that she’d fallen in the sand. Her husband was holding her hand as she tried to stand again. Having watched her walk, it seemed unlikely that she would have the strength to…

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I wasn’t prepared for this. No one told me how to take my personality, my intelligence, my accomplishments, my ambition, my ego and put them all behind a gauzy thick wall that mutes most voices and distorts the sounds of everyday life. The siren could be a whistle or a baby screaming or someone’s worn out rear brakes, I won’t know until the ambulance crosses the street in front of me.

I wasn’t prepared for this. No one told me how to stop the waves of self-pity, the dejectedness I feel when I realize that once again I have missed the point of an important conversation or become the target of loved ones’ exasperation with my having heard them wrong one time too many today. Until death do us part skipped the part about the burden of a disability suffered by the partner who doesn’t have it.

I wasn’t prepared for this. No one told me how to breathe through my hearing loss like the nurse told me to breathe through contractions, how to accept what can’t be changed but not give an inch away too early, how to look at people when they are talking, how to fully concentrate on them, take each word one at a time, see it formed, watch hands showing, illustrating. I have been spoiled by the expectation of casual conversation, the challenge of finding the best argument, winning.

I wasn’t prepared for this. No one told me how to find other ways to be smart, different ways to be competent and capable, strong and steady, and how to resist the magnet of dependency, how to be honest about what I can no longer do well but courageous about what I can still do if I am not afraid, but I am always afraid, in my heart, of failing, of not being the person I was ten years ago or five.

But then I think who am I to think I should have been specially prepared for hearing loss? There are so many people who truly were blindsided by terrible conditions, limbs lost in war, speech lost in strokes, catastrophic blindness, extreme depression, all things coming out of the blue. That’s not what happened to me. My hearing loss crept up on me, a bit at a time, until the lines on the graph headed ever and ever more downward. In my head, a constant sound plays, like water running through a pipe, sometimes there is a humming accompaniment, a secret din. I look at people talking to me and want to say, you have no idea how loud it is in here.

Every day I remember that there are many worse things. I tell myself that it is up to me whether I see myself as broken. It is up to me to handle this in a way that keeps hearing loss from being the cancer that ends my career and hobbles my relationships.

It is my job to be stronger than the thing that is crippling me.