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Disability depresses.

It struck me today how deeply I sank into a chronic state of melancholia over the past few years. My ever-worsening hearing disability ate away at my optimism and tested my ability to right myself. I became an Emily Dickenson figure in blue jeans, not quite confined to my bed but confined to my tightening world.

It was a cell.

I think I alternated between putting my head in my hands and trying to decorate my cell.

So now, after my cochlear implant, I am gathering up the things I’d left by the side of the road. Like having coffee with old friends. Like inviting people to lunch. Like discussing an issue with a group of people. Like going to a public hearing on police-community relations. Like being part of the talking world.

I feel like I am reclaiming myself from an old cardboard box in the attic, layers of old birthday cards and photos on top, clothes I wore ten years ago, books I read and loved. Reclaiming a time of confidence and certainty. A robust time.

I want to stand up. I am standing up. This is who I was. This is who I still am.

Jan Portrait 3 (2)

 

 

Five Thoughts On Tuesday Night

Office window winter

  1. It’s 3 degrees here and getting colder tonight. There is frost on my office window so thick I can barely see the street though the streetlight and Christmas lights on the house across the way are shining. Like I have 500 times before, I see the frosted window and remember the frost on the hospital windows the night my daughter was born. I couldn’t see much that night either – what I would do next, how it would work out – but it was fine in the moment and it’s that fineness that I remember most.
  2. We had dinner with an old friend and her ex-husband who are still friends who live down the street from each other. We used to spend a lot of time together, our kids grew up together, but that was then. The ties that bound us got used for other things. But on the table was the big pewter salad bowl we’d given them as a wedding present. I thought when I saw it, there’s something that has really endured. But thinking again, I realized we all had.
  3. Today at lunch, a friend remarked that I was speaking too softly. She has a hearing issue which, because I always thought it minor compared to mine, I never much attended to. Why would I worry about your limp when my leg is broken? So now my leg is mended, insofar as the cochlear implant has improved my hearing so much, and it’s my turn to watch how I am speaking and to check in to make sure she is hearing me. It’s hard, I realized right away, to really know when I’m saying what can be heard.
  4. My little exercise of writing about race was difficult but worth it. I think I’m one of the least racist people I know, but that’s my opinion. Even so, I’ve got “it,” the nugget, the kernel, the gene. Writing the three blog posts sorted that out. You know the Flannery O’Connor quote, “I don’t know what I think until I read what I say.” What comes next is always my question. I don’t know.
  5. My New Year’s resolution to keep showing up works in small and larger ways. Regained hearing is physically and intellectually empowering in ways I hadn’t guessed so showing up has right away meant a lot more than moving my formerly potted plant self from one venue to another. My brain apparently still works in public. It’s fun to see.

 

 

Happy to Come Home

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I am just running around town hearing things like a fool.

Maybe I could be happier but I’m not sure how.

A colleague said to me at the end of a meeting today, “You’re back!”

I am. I’m back.

I started to remember today who I used to be and I started being that person again.

My old clothes still fit. What a nice surprise.

 

Birds on a Wire

I made a phone call today.

And when my husband answered, we had a three-minute conversation during which I said the word “what” only once. He seemed a little flummoxed. It has been at least five years since we’ve talked on the phone. Since I’ve talked on the phone. With anybody.

The type of hearing loss I have is an awful combination of conductive (things not being loud enough) and sensorineural (things not making sense even when I hear them). The latter has always been the killer, particularly not understanding what people are saying even when they are speaking loudly. So deciphering speech gradually became impossible unless I was seeing someone talk. Yes, this means I was speech reading although I was rarely conscious of that. Disembodied speech (as I call it) was impossible to understand. So bad that I couldn’t discern whether my husband said Yes or No to a question when he was in the next room. If he came down hard on the Sssssss, then I might get it.

You can see what a problem this was from a functioning, having a life, doing anything with other people, making a living perspective.

Anyway, enter my cochlear implant. It has, in the space of about six weeks, increased my comprehension of disembodied speech (in the form of sentences) from 21% to 85%. Essentially, my ability to understand people without looking at them has quadrupled.

Sometimes I’m startled by what I hear and sometimes I don’t notice. Today, walking into the grocery store, I thought about how I didn’t need to dread the once inevitable dunce act at the check-out where the cashier would say things and I’d ask her to repeat herself a dozen times. I could just chitchat with her or not. You know, depending on how I felt and whether she was the chatty type. I didn’t have to prepare for the encounter.

Today the audiologist, trying to figure out why the new phone attachment wasn’t working, asked me whether I wanted my phone to still be on vibrate or did I want it to ring when someone called.  “I want to do what a normal person would do,” I said. And for the first time, I felt like I was suddenly becoming normal again. Even with my hearing aid in one ear and my cochlear implant receiver on the back of my head, I feel like I’m rejoining the normal world. But then what is normal, if I’m more normal now, was I abnormal before? I don’t know. They’re just words I’m using to describe. The ethics/politics of it is a finer slice that I’ll take later.

I so remember this feeling – so dejected and worn out. Walking out of meetings or social gatherings where, because of the number of people or the height of the ceilings or that there were glass windows, I couldn’t understand anything and saying to myself “I AM SO FUCKING DISABLED.” It became my little private yelling, self-pity and truth in capital letters. It was killing me, I’ll tell you that. This hearing impairment thing, hearing loss, going deaf. It was all fucking killing me.

So when I got home, I decided to make a second call. I called my daughter in California. She didn’t pick up. I kind of knew she wouldn’t because she’s in wall to wall meetings every day. So I left a message. A brief message because I wanted to finish before I started to cry.

It is, I guess, my new normal. That I can call my daughter on the phone and talk. It seems incredible.

What other people have, I have again.

I can’t believe it.

Thinking and Rethinking

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I came down the stairs from the ear surgeon’s office and sat on the bench by the front door.

“My time as a pitiful person is coming to an end,” I wrote on my phone, wanting to capture the unbelievable, the incredible in one sentence.

I wasn’t sure what I wanted to do with the sentence but it was part of marking the passage from being such a seriously hearing impaired person to a person with a cochlear implant that was working better every day. I can hear so much more.

I can function so much better. Well, it feels so much better but it’s not ‘normal,’ not effortless. I don’t think hearing for me will ever be effortless. But it isn’t maddening anymore.

In the car, I thought about that sentence again. “My time as a pitiful person is coming to an end.” And I drove through town, listening to Christmas carols on the car radio and, for the first time, knowing which was being sung by Bing Crosby and which by Nat King Cole.

At a stop light, I thought again. Is that what you were, Jan? A pitiful person? What does that say about all the people in the world who are hearing impaired or having some other struggle with their minds or bodies? Are they pitiful? What does it say about you when you take off the receiver/processor at night and put it in its little drying chamber and take the other hearing aid out and put it in the jar and become almost completely deaf in an instant?

No, I’m not pitiful. I wasn’t pitiful. Many times, I was self-pitying, I will admit and, many times, I was overwhelmed with the burden of hearing loss but I wasn’t pitiful. People with disabilities aren’t pitiful.

At the gift shop at the botanical gardens, there was an older man with two hearing aids who was a volunteer. “How do you like your digital hearing aid?” he asked me. I told him that I’d just gotten it but it was making a big difference already.

He told me that he was a disabled veteran and how he had other implants to get before thinking about a cochlear implant. He joked that when he died, they’d have to plant all his implants. He told me how his hearing aids were better than the ones he’d had before but he still became “so frustrated sometimes” when he couldn’t understand what was going on. Yet, he was working in the store and talking to people, talking to me, trying to sell me a game about Milwaukee history in a giant box with a bigger price tag. Nothing about him was pitiful.

No, we’re not pitiful. I’m not pitiful, then or now. We are all just forging ahead.

And I am proud to be in that number. The folks who just forge ahead.

Just When

Old Seven.jpg

Just when I started sinking, just when it became clear that the cochlear implant surgery was a mistake, just when I started planning my days around long walks by myself, just when I’d resigned myself to having my children speak to me in three-word sentences repeated dozens of times, just when I’d started charting out the rest of my life as a non-hearing person, I heard the weather forecast on the car radio.

After that, I ate a cheeseburger and listened to talk radio. Then I had a conversation with my husband without looking at him. Then I rode in the car with him looking straight ahead and listened to him as we drove in the dark. Then I went to a fancy place for dinner with friends. Then I ran into an old friend and we laughed and chatted about getting together to have lunch now that I could hear her. Then I had a three-hour dinner with people at other tables and Christmas carolers making a lot of noise. And then we said good night to our friends and came home.

And I thought right away of this picture I took of the old Seven Mile Bridge in the Florida Keys. I thought about how trapped I have felt. How I have felt trapped behind the fence.

I’m not anymore. It’s working. The cochlear implant, my brain, the technology, it’s working. It’s early yet and there is a long way to go but it’s working.

I’m not trapped anymore. I am getting free. And I am so glad I can barely speak.

 

My New Life with Adele

 

IMG_3763What am I going to do when I can hear better, when my cochlear implant is activated and I’m getting all kinds of sound and decipherable speech in my ear, when I might know what instrument is being played without seeing it and catch a new melody, something I’ve never heard before?

I’m going to figure out the deal with Adele.

I bought her CD yesterday. I stood in front of a big rack of Adele CD’s, the one that has already outsold everything in history, and I thought, hey, it’s time to learn what everyone is so wild about. I can do this now, I thought, I don’t have to continue to be a popular music moron.

I am on the precipice of being hip. In the know. I will be humming a tune created within the past year. I could be swaying and beating a rhythm. Singing in my car, my new CD smokin’ in the CD drive. I could maybe get one of those CD holders that go on the visor and go to concerts. Smoke something. Maybe get a new Bic lighter. Mine went dead ages ago.

So I think all of this is pretty darn cool. I can’t wait.