Red's Wrap
Happiness. It's relative.
Cochlear Implant Update
I wear this thing on my head. Looking at it now in the photo, it strikes me as enormous, a contraption. I wonder why people don’t just stop in their tracks and ask me what it is. But they never do. It’s like seeing someone with an artificial leg and wanting to inquire about how it works but being compelled to ignore it. What artificial leg? I didn’t see an artificial leg, did you?
This is the receiver (behind my ear) that captures sound that travels through the wire to the round thing (which is actually a magnet) and transmits the signals through my skull to a twin round thing inside my head which then sends the signals along several wires to 22 electrodes hanging out in my cochlea. The electrodes recreate the function of the nerves in my cochlea, sending the sound signals to my brain to be made sense of.
All of this is programmed electronically to fit specifically with the nature of my hearing loss. The system was calibrated and re-calibrated for a year after surgery by audiologists at the Medical College of Wisconsin. With the implant activated (receiver on) and the hearing aid in my other ear, my sentence comprehension is in the 90th percentile (having been in the low 20’s prior), single words are lower (60’s). Without the receiver and the hearing aid, I am very close to completely deaf.
You’d be surprised how at home with that I can be – the being almost completely deaf. I have a lot of practice living inside my head. It’s homey there. There aren’t a lot of questions or banter but there are no arguments either. Still, living that way, cut off from most sound after a lifetime of hearing sound, is isolating and difficult. So the cochlear implant has been like a hearing rebirth. I hear things. I hear people. I hear the car radio. I hear birds.
But I don’t hear everything. I still have to position myself in meetings so I am able to see people’s faces. Family dinners where everyone is talking at once are impossible. So I drink a fair amount to keep myself occupied. I ask questions that have long answers, stories are best. I have a dozen years of signals with my husband at the other end of the table so if I’m really lost and want not to be, he live captions the conversation for me. That’s rare though. I long ago decided I don’t need to know everything that’s going on.
One on one conversations are lovely. I can even have a conversation with someone while driving the car, sitting side by side. It’s hard to describe what a big deal that is. I don’t have to face someone to talk to them. That’s wild.
This also means I can use the phone. A single voice, faceless, I can hear that. They’ve tested me and my comprehension is terrific but years of having to abruptly end conversations because I couldn’t decipher what was being said have given me a phone phobia that won’t quit. It’s a residual effect of hearing loss — like phantom pain in an amputated leg – well, not really. A person gets used to being incapacitated and it can be strange giving that up.
Tonight at the ball park, my husband told me about a little boy he’d seen with two cochlear implants. I looked around in the crowd to find him – you know, show him he has a cochlear comrade in the world. Last year at the ball park, an usher took off his hat, turned around, and pointed at his cochlear implant and he immediately became my brother. But the little boy was gone. My husband told me he’d talked to his mom, explained that I had a cochlear implant and it cheered her. “You don’t see very many people with them,” she told him. No, you don’t. That’s true.
I am the only person I know with a cochlear implant. It’s a marvel of science and it saved me from being completely erased by my hearing loss. So I’m oddly proud of it, proud of the hole in my head the surgeon drilled, proud that I took this step to reclaim myself. I’m glad for all of it. I wear my brown receiver as a badge of resilience and pluck. And great insurance.
Millions of people have untreated hearing loss. They lose jobs and fracture relationships because they can’t understand what is being said to them. They become depressed and lost, erased. Hearing loss, the stuff of old people jokes, isn’t a minor, inconvenient thing. It’s cataclysmic.
My hearing loss isn’t cured; it has been compensated for with amazing technology that should be available to everyone. Think about that while you watch the endless health care debate at the national level. This miracle that enables me to hear and function in the world isn’t available to everyone but it should be. Everyone deserves to hear the birds singing.
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This post was written for my blogging friend Pat. Go visit her sometime – she’s an extraordinary photographer and often posts photos that are just startlingly beautiful. She blogs at A New Day: Living Life Almost Gracefully.
22 Comments on “Cochlear Implant Update”
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Oh what an amazing insight. Thank you so much for sharing. Years ago when I worked in the NHS I authorised Cochlear implants for children – it was at a time when they had to be funded on a case by case basis. It is therefore wonderful to learn how they transformed lives.
Reblogged this on SERENDIPITY and commented:
One of the most thoughtful pieces of writing on this subject and particularly relevant in this household. Few people really understand how much lack of hearing removes you from “real life.” Garry once commented that even if you are blind, you can still communicate, but when you are deaf — you lose the ability to communicate and that’s a massive personal loss.
They have come a very long way. There’s still further to go, but it’s a miracle that they come THIS far and I hope it’s a miracle for my husband.
Thank you for this article. My Wife, Marilyn, found it among several pieces she’s researched for me. I have had a profound hearing loss for most of my life. I wear two of the hearing aids pictured in this blog. My hearing has deteriorated in recent years. My sentence and word comprehension have deteriorated BADLY. Recently I was told i am a candidate for cochlear implant surgery. I’ve had a couple of consult sessions. I postponed the next session, frankly, because I’ve become very anxious about the surgery (cutting into my head. We’ve done all THOSE jokes.) and the estimated one year of re-learning and rehabbing. I’ll be 76 in a few days and wonder if the surgery and the lengthy re-learning period is worth it this late in my life. Marilyn has been a TOWER, coping with all the daily problems stemming from my hearing loss. She answers ALL phones. I have a captions phone but have that phone phobia hatred you mentioned. There’s a tremendous of pressure on my Wife because she has to accompany me on medical and social appointments as my “Guide” to make sure I can cope.
This article answers some of the personal questions I have about the cochlear implant surgery. I am grateful. THANK YOU.
If you want to chat further, my email is jwilberg@wi.rr.com.:)
My husband is up for a cochlear implant is is very worried about it. I have sent him your link as well as a link to this post — to which i am sure he will relate. We are “shopping” for the right place for the surgery. NOT happy with our local hospital … but it is heartwarming to at least know it works. I’m hoping he can get one without the external hardware. I know they are beginning to do that surgery, especially here in Boston, but it’s still relatively recent.
Hi Marilyn,
Wishing your husband well. It is a bit of an undertaking but it is well worth it. The surgery itself is a little intimidating but less of a big deal than you might imagine. There was very little pain although I did have to sleep upright for a few days. The several weeks of silence is a trip but it was okay bc I still had some hearing aid assisted hearing in my other ear. The activation of the implant was a total surprise and for weeks I was hearing strange things, like birds chirping and paper crinkling, that I hadn’t heard for years. I remember the first time actually making out what was being said on the car radio. It is a long process, however, to adjust to the implant – several months to a year. Go somewhere where this is the central thing they do and where there is really good follow-up and technical adjustments, the latter being key. He will have several full-blown hearing tests in that first year as his brain adjusts to the new sounds. Repeating again – it is well worth it. Cochlear implant has given me a new life.
I just forwarded this to my husband. He has been very concerned about it. Partly because he is 76 — a very healthy 76 and he could easily make it to 100 — but he wonders if it’s worth it. And also, we needed to find a hospital we trust. I think we have, though it is a lot less convenient than our local hospital. But Boston Eye & Ear is about as good as it gets for this kind of thing and I think he will feel a lot better about everything just having them to talk to.
He has gotten used to the world being quiet. I sometimes wonder if he really wants all that noise back again. Telephone calls — he really hates telephone calls and not ONLY because he’s deaf, but because he was a working TV reporter for 40 years and the phone always meant they were calling him into work. He still jumps when the phone rings even though he has been retired for 17 years. Tomorrow when he turns on his computer, he will see all the links i sent him and I expect he will be in touch.
I just want him to make whatever decision makes him happy. I’m happy to be with him, deaf or hearing 😀
Jan, I have just written a lengthy comment after reading your article. THANK YOU, again!
Jan, This is a brain and heart issue for me. My brain knows the surgery will hopefully lead to hearing that I’ve never had in my life. My brain also knows it will hopefully improve quality of life which is very low right now. Quality of life especially for Marilyn and me. I know it is infuriating for her to work around the problems and misunderstandings directly attributed to my hearing loss. It’s not fair to her, I really get it.
My heart wonders whether a soon to be 76 year old retired TV News Reporter needs this new adventure at this stage of life. I’ve fought so many battles in my professional and personal life — my hearing loss the biggest adversary — that I wonder if I have enough left to handle the surgery and lengthy relearning process.
As a TV news reporter, Stress was with me 24/7 for more than 40 years.. I’m just not sure what I have left. I am not sure if many understand what I am saying. THANKS AGAIN, for the article.
Really interesting, thanks.
Thanks for reading about this.
I’m really excited for you! Birds singing is lovely and no matter what life a person has lived, everyone should be able to hear a bird sing (especially in the morning).
Although I can’t relate to the idea of being unable to hear, I thought you should know that I, too, love one-on-one conversations and by the time I’m able to have one with a person I trust, I tend to let loose all kinds of crazy, built-up mumbo jumbo. I get a little overwhemled around too many people. Not because I’m socially incapable, but because my mind is everywhere and there’s too much talking. Sometimes sip on a little bit of coffee, swing my legs a little bit, and imagine something else. lol Maybe I find the conversation dull or inappropriate, but eh, it’s whatever! Not sure what it is. I am positive that the beautiful things you hear in the quiet far outweigh those that you hear in the not-so-quiet. Enjoy! Maybe one day they will have pink ones you can wear. lol 😛
I found this really interesting. I do recall seeing this on someone, but I wasn’t sure what it was although I suspected to do with hearing. I am experiencing some problems with my hearing and I do have tinnitus which is annoying but I don’t let it get to me, because there is no point. It is what it is. I also popped over to your friends blog – her photo’s are gorgeous, a lovely blog which I followed.
Well done you. Being a wearer of dual hearing aids for about 10 years I can empathise with everything you describe. I always make a point of speaking to cochlear implant wearers, especially the youngsters. They are normally very happy to be special, and to talk about their experiences.
Hurrah for you – I feel so much joy when I think of what you have gain. And know that it took so much tenacity and fight to make it work for you. Thanks for writing the update as I’ve been wondering how you have been doing with it.
Very informative. Thank you
Such a positive enlightening post. Modern technology has given you back so much and I’m really pleased for you and all the others that these devices can and will help. – *smiles*
– Esme upon the Cloud
Reblogged this on Praying for Eyebrowz and commented:
Wonderful piece by Jan Wilberg at redswrap.wordpress.com
Congratulations on getting your implant! My son was born deaf, and for a while we considered getting him one. In the end, with all his other health complications and the fact that he’d likely never speak due to tube feeding and not developing his tongue muscles in infancy, we chose to immerse him in the Deaf community instead. I often wonder what his life might have been like with implants though.
Thanks for this eye-opening article! 🙂
This has been nothing short of a miracle for my mother-in-law and her twin sister, both of whom were nearly 80 and had profound hearing loss for the last 30 years. It changed their lives and ours. Now in a nursing home and unable to remember to turn her implant on, when we visit my MIL (nearly daily) and connect the coil to the magnet, her face lights up – like she’d been sitting alone in the dark and someone turned on the lights. Although when they visit each other, we have to make sure they don’t get their devices mixed up!
Reblogged this on O LADO ESCURO DA LUA.
It is good to read about what it is really like for people with cochlear implants. I am one of the millions who do not want to say and feel it would be very rude to ask. Thank you for this post.