A few days ago, an acquaintance of mine called me up. She's a volunteer with the non-profit organization I used to work with and a very warm and involved person. She's the kind of person who's the first to volunteer her house for a get-together, a kindness I have personally often felt bordered on pathology, but that's just because of the usual state of my house.
She had heard, she said, that I'd had the implant surgery and it had been successful. Now, she had a close friend who is scheduled for the surgery herself, who's anxious and a little confused and facing a very great unknown. Would I sit down and talk with her?
Would I? I was instantly transported back to February of this year when I was the one facing a surgical experience I couldn't get my head around (pardon the pun) in pursuit of hoped-for results I couldn't begin to comprehend and which nobody could accurately describe or demonstrate for me. Yes, I said, I'd be happy to talk to her.
Tell her to make a list of her questions, I said. I guarantee she'll forget some if she doesn't. And tell her not to be shy. I'll talk to her about anything she wants to know.
So our mutual acquaintance set up a meeting today and I met "Linda", who'll be having her surgery in October.
She's a woman a bit older than me who suffers from
Ménière's Disease. As a result, she is wholly deaf in one ear and wears a hearing aid, which is becoming increasingly useless, in the other.
Linda has some issues to cope with that I don't. Most importantly, her Ménière's means that her surgeon (she has a different one than I had) has told her he simply cannot predict the effect the surgery will have on her balance. She already has balance problems and has had to stop, for example, riding her bicycle. In fact, there was hesitation to offer her the opportunity to have the implant at all, due to the fact that for her, a potential side effect could be a dramatic loss of mobility.
I told her a bit about my background and that I couldn't comment at all on things related to her Ménière's, or how it might affect her experience. I told her that I'd had little or no balance problems, but that they hadn't anticipated that I would, because it just wasn't part of my history.
But I told her I could share my own experience and let her add that to her pocketful of knowledge.
To my delight, she had a great big list of questions, all right. The first thing she noted, excitedly, was that the
processor model I wear is the same one she has ordered. I told her I was glad to hear that, because I adore my processor - it's light, it's easy to care for, it's comfortable, and daily use (from battery replacement to volume control to dehydration) is a dream. I took off my unit and took it apart, let her handle it and ask questions about the various parts. I showed her the direct-connect earhook and explained how I could plug it into a discman or computer.
"It looks so scary and complicated," I said. "But within a couple of weeks it's as natural as putting on your glasses in the morning and about as hard to take care of."
She had many questions about the surgery itself, of course. How much did it hurt? How soon did I leave the hospital? When was I able to drive and get around on my own? (Linda lives alone with her beloved dog.) Was I dizzy after the surgery?
I answered all those questions and was able to offer advice on some of the unexpected things I'd encountered.
- Realistically, she was going to need some help to clean the surgical site, I said. (It's a simple task - clean it a few times a day with a Q-tip, first with sterile water, then with an antibiotic ointment. Simple - and critical to prevent devastating infection at the surgical site.) I'd tried using two mirrors to do it myself, but it was just too awkward, and Husband had taken on that role. Fortunately, Linda will be staying with a relative in the Halifax area for awhile after her surgery, so they will be prepared that the relative will need to take on that role.
- When you leave the hospital the day after the surgery, I said, they'll cut off your bandage and compliment you on how great things look and tell you to keep it clean and let it get air and shake your hand and bob's your uncle! Off you go! And your hair is gonna be shaved and full of ... staples and stitches and bactine and blood and polysporin and ...stuff and you're going to look in the mirror and say to yourself, "I cannot go into the lobby of this hospital, much less the streets of Halifax, frightening housepets and small children and alarming pensioners like this." Make sure whoever picks you up has a scrupulously clean cotton scarf for you to wrap loosely around your head.
- Yeah, they shave a chunk of your hair, I said, but wearing a scarf for the first month or so takes care of any embarrassment. I was back at my desk job a week after the surgery, I said, but a full work day tended to do me in.
"If you like, if it wouldn't bother you," I said, "would you like to feel where the implant is?"
"Oh, YES!" She was very eager and I took off the processor and then had the incredibly bizarre experience of having two middle-aged ladies (my friend the volunteer was
'satiably curious as well) poking around behind my left ear. It is, my friends, a most interesting experience to volunteer, in the interests of philanthropy, to have people poke at any part of your body and go "ewwwwww". But I understand, I honestly do. When you touch me behind that ear now, you can feel the implant under the skin. And the first reaction is an "ewwwww". But I told her that her own head wouldn't feel to her like an "ewwww". It would feel a little bumpy. And fascinating. And she would love every lump and bump that meant that she could hear again. And she was pleasantly surprised - to find out that you couldn't see a scar, to find out that the skin was all clean and smooth and normal and enclosed and that the headpiece just attached with a magnet. To see how it really works.
She had a dozen more questions about activation. What did I hear right away? What could I hear now? Could I hear music? Could I hear my own voice?
We discussed the electronic 'beeps and boops' that you are told to expect. I described my results - understanding full sentences immediately - and told her that they were apparently super-good, and that she shouldn't be discouraged if hers were much less dramatic. But... I said... if things were working well, there would be an ongoing improvement (which I myself am still experiencing). I warned her about the "Micky Mouse voices" and told her not to panic - they'd start differentiating after a short while.
As for music, I said, I enjoyed it enormously now.
"I... used to sing," she said. "In the church choir. I - had to stop. I couldn't hear myself."
"You know there aren't any guarantees," I said. "But...
if your implant works properly, which statistically it should... I think you will definitely be able to try singing in the church choir again."
"Do you sing?" she asked eagerly.
"All the time," I said.
"And you can hear yourself?"
"Oh, yeah. I mean, I think I sound a lot better than I really do, but so does everyone," I said. "You ever see someone singing into a hairbrush in front of the mirror? Of course, I sang when I was deaf, too. That must've been a nightmare. The cats are still traumatized."
I told her how it felt, learning to hear again. I told her that it felt like the process, initially, goes
- I hear that sound and -
- I see a dog barking and -
- my brain says, in a flicker, "I see a dog barking and that must be the sound the barking dog is making. What did a barking dog used to sound like? Oh, yes, that makes sense, that connects and it does sound like I remember 'a dog barking' sounded. It fits."
And your brain does that faster and faster and more and more smoothly and more and more automatically and better and better without visual cues until you are
hearing.
Since she has been a hearing person until recently, I hope that the dots connect for her real quickly, the way they did for me.
We talked for almost two hours and when we parted we exchanged email addresses and I know that I will follow up with her and probably end up visiting her and/or taking food to her when she gets back after her surgery. (I can't help it - I'm from Newfoundland. Any significant life event results in showing up at the door with food. In this case, I know that after surgery you don't feel like cooking, but dammit, you often feel like eating.)
I'll let you know what happens...
Washington University School of Medicine Ménière's PageMénière's Disease Information CenterMénière's Disease support organization siteronnie
