Billy 2.0 – Starting a journey of known unknowns

Donald Rumsfeld

This is Donald Rumsfeld. He 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.

22 Replies to “Billy 2.0 – Starting a journey of known unknowns”

  1. Wishing you all the best of luck Billy. It’s a scary jump and I wonder if you’ll look back and say “I wish I’d done this sooner”?

    1. It’s certainly possible Tina. I wanted to thank you anyway – you’ve been really supportive when I needed questions answering and I appreciate it.

  2. Good luck on a safe operation. 🙂 Stay in touch and take care of yourself. 🙂 🙂 I’m glad you could make an informed decision on something as sensitive as this. 🙂

  3. I’m looking forward to playing The Game again! (The capital letters make it sound very formal!) I think Barnaby will be particularly good at it don’t you – and he’s very comfortable with all the unknowns still!

  4. This is really interesting, You’re a very skilled blogger. I have joined your feed and look forward to seeking more of your fantastic post. Also, I have shared your website in my social networks!

  5. To add to Rumsfeld, before long you’ll know unknown knowns. I wish you a glitch-free upgrade and may your only headaches be the settings on your Canon XF305.

  6. Amazing weblog! Do you might have any suggestions for aspiring writers? I’m hoping to start my own weblog soon but I’m a little lost on everything. Would you suggest starting with a totally free platform like WordPress or go for a paid option? You’ll find so several choices out there that I’m completely overwhelmed .. Any tips? Appreciate it!

    1. Hi there – I’d start with a blog, or perhaps buy a URL and host a blog there. Either way, it’s worth writing something on a weekly basis and seeing how it grows from there.

  7. All the best with your surgery your activation date will be here before you know it
    : )
    I was switched on last week next week I am starting telephone training eek

  8. Hi Billy,

    Good luck in your journey – I’ve had mine since 1993 and it still rocks nearly 20 years later. Welcome to Cochlear Implant Experiences too 🙂


  9. Hi Billy,

    I lost my hearing earlier this year and I had the cochlear implant surgeon in April. I am still adjusting but I thank God, I can hear a lot better, I am not 100% but working towards getting there. Stay positive and best of luck to you!

Leave a Reply