Donald Rumsfeld once said:
There are known knowns; there are things we know that we know. There are known unknowns; that is to say there are things that, we now know we don’t know. But there are also unknown unknowns – there are things we do not know we don’t know.
He may have been derided at the time, but watching his speech I know exactly what he meant. 28 days from today I’m embarking on a journey of known unknowns and unknown unknowns.
On Tuesday 6th November at around 7.30am I’ll be in a hospital room while a surgeon uses a marker pen to draw a line behind my ear. Soon after that, I’ll be wheeled into an operating theatre where they’ll make a small incision behind my ear, following the line of marker pen ink.
Once they’ve opened a flap of skin behind my ear, they’re going to drill into my skull, until they reach my inner ear. They’ll then hollow out a small cavity in the flesh beneath the ear flap, where they will insert a piece of technology worth about £10,000. Into the hole in my skull goes a tiny electrode extending all the way into my inner ear, with around 20 or more individual contacts stimulating my cochlear. Hopefully the general anaesthetic will do its job and I won’t feel any of this while it’s happening, because I’ve seen pictures of this procedure and it looks pretty painful.
It’s called a cochlear implant, and it’s supposed to help me hear better than I currently do now.
How much better will I hear than before? That’s a known unknown.
I never had much hearing to begin with. What I do have is now slowly deteriorating with age. Lipreading is getting harder. I don’t feel as sharp as I used to. But it’s deteriorating so slowly that I don’t notice. Like a slowly melting ice cap, one day I know I’ll realise I’ve lost far too much and I’ll never get it back.
I could easily muddle along with what I have, but I want to know. I have to know whether this might change things for me. I know I’ll regret it if I don’t.
Now, here I am. One month to go. How do I feel?
Confused. Nervous. Unsure. Excited. Frightened. Confident.
Why the hell am I going through with this? That’s a known known.
Ask me how I feel about having a cochlear implant once, and I’ll give you my answer. Ask me how i feel about having a cochlear implant again, and I’ll give you a completely different answer.
Ultimately I want to do it because I want to hear better, rely less on lipreading and be better at everything I currently do, in small ways and in big ways. But it’s not as straightforward as that.
The staff at the hospital are actively trying to manage my expectations. They tell me that my speech won’t improve, that I won’t be able to use the phone or listen to the radio, that the best I can hope for is to improve my lipreading and to distinguish background sounds more clearly.
Then I meet people with cochlear implants who tell me that it’s changed their life. Then I meet other people with cochlear implants who don’t seem to hear or speak.
Some people are switched on and immediately listen to a live orchestra and make out each and every instrument. Some people are switched on and all they feel is a faint vibration in their head.
Why do implants work well for some and not so well for others? That’s a known unknown.
When I was diagnosed as deaf, my mother gave up work. She worked with my Grandma Phyllis (a teacher at a village school) and my Granny Connie (a teacher of the deaf at Mill Hall) to devise The Game, a complex scheme of cue cards, pictures and toys. The Game helped me to learn speech, lipreading, reading and writing.
When I’m switched on six weeks after the operation, I have no idea what will happen. Either I’ll feel a faint buzzing in my skull, or hear consonants for the first time. Either way, the hard work starts after that. I’ll start playing The Game again with my mother, my wife, and my son. It’ll be fun.
One thing I won’t do, that I’ve promised myself I won’t ever do, is be dishonest either with myself or with others to make myself feel better about the implant. I’ve met my fair share of deaf people who like to exaggerate their lipreading or hearing ability, with or without an implant. I used to be one of them too.
If I don’t hear music, I don’t. If I don’t hear birdsong, I don’t. If I find it hard or I find it’s not what I wanted it to be, I won’t pretend otherwise. No pretending that I can suddenly judge people’s singing voices, that I can hear accents or other people’s conversations. It will be what it will be, and I’ll work at it.
In the midst of all these known unknowns and unknown unknowns, there is one known known:
I’m having a cochlear implant operation in four weeks. Wish me luck.
First published on William Mager’s blog: http://wlmager.com/billy-2-0-starting-a-journey-of-known-unknowns/
William Mager is an award-winning director for film and TV, who made his first film aged 14 when he “set fire to a model Audi Quattro and was subsequently banned from the school film club for excessive pyromania.” He’s made short films, dramas and mini-series, and works for the BBC. Check out his blog and if you’re on Twitter, follow him here.
The Limping Chicken is supported by Deaf media company Remark!, provider of sign language services Deaf Umbrella, the Deaf training and consultancy Deafworks, the RAD Deaf Law Centre, and BID’s upcoming 5th anniversary performance by Ramesh Meyyappan on 12th October – don’t miss it!
hearinglink
October 8, 2012
Thanks for sharing your feelings at this point in your cochlear implant journey William. It’s really helpful to read and explore other people’s experiences. One of Hearing Link’s members is sharing her cochlear implant journey through her blog http://www.hearinglink.org/blog/cochlearimplant and vlog. She is a little further on than you (switched on at the beginning of September).
Good luck- we hope you’ll be giving us an update!
William Mager
October 10, 2012
Thank you for that link – I’ll keep looking at it. And yes, I think there’s a few more blogs in this yet! x
Linda Richards
October 8, 2012
Warm wishes to you Billy. Or Gareth?
When you said “no pretending that I can suddenly judge people’s singing voices”, I thought, yes, has anyone else noticed the likeness between William Mager and Gareth Malone?
In fact, there are many lookalikes in the Deaf world – Doug Alker with the Brookside actor, (forgotten his name) was probably one of the most notable to he identified in this way.
Billy, thanks for your honesty. Hope it goes well for you. Hugs.
newfilmblog
October 8, 2012
Gareth Malone?! That’s a new low for me after Danny from The Script and Peter Andre 🙁
Linda Richards
October 8, 2012
Sorry to offend. Not intended!
Editor
October 8, 2012
I’d be honoured to be compared to Gareth Malone, but maybe that’s just me 😉
Jules
October 8, 2012
Good luck William 🙂 I was implanted 18 years ago (10 yrs after 100% bi-lateral hearing loss due to meningitis), so I’m quite far along on my own journey. Happy to share my experiences with you 🙂
Emma
October 8, 2012
Hi William – personally I found the last 4 weeks of waiting awful – the decision made and nothing else happening.
I’ve been implanted for 20 months now… mostly good.
You can read my countdown here: http://lifeinparts.blogspot.co.uk/
Emma
William Mager
October 10, 2012
I thought I replied to this before – sorry. I thought your countdown was excellent, particularly the advice to other implantees. I’ll definitely take a lot of that on board.
Robert Mandara
October 9, 2012
Good luck William! I look forward to seeing your honest opinions after the operation. It seems to me that your opinion will still be rather subjective. Perhaps you should try to list the things you can/can’t hear now (with hearing aids if you use them) or the places that you find most challenging? For example, how close does a car need to be before you hear it? Then, once you have the CI, you can compare more directly. In the ideal world you’d be able to say that CI is X% better than a hearing aid but, of course, it’s not nearly that simple. The more accurate your measurements though, the easier it will be for others to decide whether or not to go with CI.
WLMager
October 9, 2012
That’s a very good suggestion – I’ve got a couple of experiments lined up before D-Day to help me work out the before and after…
mmostynthomas
October 9, 2012
Good luck Billy. Have you read my blog? In it I reveal that I can distinguish singing voices a few months after having my CI operation: http://themostynthomasjournal.com/category/a-mothers-ci-journey/#!/page/1
But I still need to lipread and use subtitles, and watch videos rather than switch the radio on. Frankly, I could do with more hearing-and-no-lipreading practice. My CI has transformed my life, but it’s no exaggeration either that a lot of work goes into learning to use it effectively, at least from my point of view.
Different people have different experiences with their CIs, but to be honest I haven’t come across a CI user who pretends to hear more than they really do. How do you pretend to hear something you haven’t heard before in your life? When a sound comes into a new CI user’s life for the first time, don’t they try to describe it to others and find out or confirm what it is?
I recall once talking about how Elvis sounded on Jailhouse Rock and, rather than get excited, my colleague was almost indifferent – indicating that, in fact, my experience correlated with hers. The only difference was that hearing Elvis was nothing new to her, whereas for me, it was a new discovery.
Of course, it’s possible for deaf people to imagine what someone sounds like just by watching them in action. But actually hearing them – for the very first time – is something else.
Again, good luck, Billy. I look forward to reading more of your adventures with a CI. It’s good to try and approach the journey with low expectations, so you can work your way up without too much disappointment.
deaflinguist
October 10, 2012
Welcome to the CI adventure.
CI teams are careful to manage expectations, in common with all hearing-related professionals, as we know! In my case, my expectations were so low after over 30 years of complete silence – think blank audiogram even when specially stretched to 140db – that they actually had to haul me in and tell me that I was being a bit pessimistic about my chances!
I’ve honestly been blown away by it and don’t mind telling people so.
A friend sent me a card wishing me good luck with learning “hearing language” as she knew how fascinated I am by languages. It was more perceptive than she knew, because the ‘this could be interesting, let’s learn “hearing language” ‘ approach was a good way to manage my expectations and keep myself motivated, being realistic but committed, and just going with the flow – absorbing it all.
I’ll never be a native “hearing language” speaker, but I’m now fairly fluent. As with all languages, there comes a period when you move beyond the nuts and bolts of the words to the culture, and it’s been fascinating to me to pick up all the nuances I’ve never heard before, and how poor hearing people actually are at communicating, among other things.
Good luck with it all.
William Mager
October 10, 2012
Wow – thanks for that lovely comment deaflinguist. I’m certainly trying to balance pessimism with optimism – in fact I remember one of the speech therapists stopping one of my listening tests mid session and asking me, exasperated, ‘Why do you want a cochlear implant?!’. A lot of the assessment process and interviews have felt a bit like part of a greater test that I wasn’t sure I was passing or not… having to think twice before answering every question, and coming out of each assessment feeling unsure as to whether I was doing the right thing…
Maybe all will become clearer nearer November! I’ll keep thinking and writing about it anyway. Writing about it, like a lot of other CI bloggers, seems to help with the process of having it in the first place.
Billy