Welcome

Thanks for joining me.

I am not sure where this journey is going to take me, but I've a sense from others that it isn't going to be an easy ride. There will be setbacks, periods of slow progress, maybe even lapses into depression, and moments (I hope) of reward and elation. I can't tell what, when, how quite yet.

I'm going to be writing quickly and when I can, so don't expect great prose!

Sunday 2 December 2007

The way ahead

First things first. I needed to have a fair degree of audiological assessement. Notwithstanding the fact that a consultant at one hospital had told me to 'come back in December', at least that hospital [whose ENT Department shall be nameless] did take the hearing loss seriously enough to look to step up through the hearing aids.

So on November 1st I moved to using a Sprint 2 hearing aid, and then - on reassessment on 23rd November - up to a Senso aid, both magnificent hearing aids but increasingly not powerful enough to cope with the hearing loss.

We had at that stage completed NO - note, NO - tests other than one lonely pressure test in September and a series of pure tone audiometry tests at 'nameless ENT Department'. There had been no ABR test, no stapedial impedance test...nothing. Zip.

So seeing Tony Wright at 150 Harley Street on 5th October, in which he readily posited a significant progression of my SNHL (and kindly gave me an intratympanic steroid injection to help...the first act of intervention other than a few betahistamine tablets from 'nameless ENT Department') was both a shock and a relief.

I left the consultation reeling. It was as bad as I suspected, but what were the options? Tony has shown me a photograph of a section through the cochlear, pointing out with a move of the hand that many hair cells were 'gone', and that that in all probability - to be confirmed - was the cause of the hearing loss. He had suggested that I needed, quickly, to get referred to the Cochlear Implant programme at the RNTNE Hospital.

I knew about cochlear implants of course, but not enough. My usual mode when faced with anything new is to search the literature (a good academic impulse!) but I also made my way to the bookshops. I bought Michael Chorost's book 'Rebuilt: How Becoming Part Computer Made Me More Human' (Houghton Mifflin, 2005) [Michael's website at http://www.michaelchorost.com/] is helpful for the uninitiated].

That book completely shocked and disoriented me. At once amazed at the technology, fearful of the implications (a CI is a one-way bet; if it doesn't work, you can't just take it out and return to your deaf-but-still-getting-a-tiny-bit state...) and surprised by Chorost's evident love of the 'cyborg' state that implantation produces, I was genuinely thrown by it. I sat up, night after night, hoping that having a CI did not demand this kind of celebratory acceptance, even love, of the technology. I couldn't find it in my heart to feel warmth and gratitude to the bioengineers and software developers...it seemed inhuman, even a denial of the human.

I remember sitting at the kitchen table, at half two in the morning, sobbing quietly at the thought that this was likely to be the one option. That it was not going to produce a return to 'hearing'. That it would mark me as profoundly deaf so totally I'd wear a processor and hook-up on the outside of my head like a sherriff's badge in a western movie...A CI may be a wonderful thing technologically, but it is not a perfect solution.

That, however, is breakthrough thinking. Once you accept that even this brilliance - or the technological brilliance to come as CIs improve - is not going to make you whole again, you can begin to face it, even embrace it, then (possibly) yearn for it with realism.

I will be honest here. I cannot love the prospect of a CI yet. I need it, it is my only option, but I cannot (yet) love the thought of the thing.

2 comments:

Jennifer said...

Hi Mark!! I have been reading through your blog and wanted to just extend a warm welcome to the CI blogging community :) I'm sorry you've had to come to this point...your last statement that "I cannot love the prospect of a CI yet" is perfectly natural. I always knew that it was in my future, but I didn't want one either, and was never prepared to love one. It took coming to the very end of the road, as you have (that SNHL is a bugger, isn't it?), for me to accept that I had no other options. And now...yes, I love my CI. It's not perfect...but it's amazing how much I've gained from it in just four weeks...the possibilities are exciting!
Take time to mourn your loss...I went through all that last year. I had always lived fairly normally in a hearing world, but had suddenly been forced into quietness...and it was painful. I hadn't ever wanted to think of myself as "deaf"...and a CI would, indeed, make me completely, totally deaf. It's a lot to take in.
Hang in there...e-mail if you have any thoughts or questions. I may not be able to answer them, but would welcome the opportunity to be a cheerleader as you go through your journey into hearing again!

Mark Gray said...

Jennifer, thanks so much for that comment. I've read your blog as a hopeful sign that, while the going can get tough, the journey gets (increasingly more) worthwhile. If anything the prospect of reaching the two year mark at which, as far as I can see, most people are happy with progress is urging me on. I'd love to count on you as a cheerleader - being further down the track, you will have seen many of the hurdles (to push the metaphor!) that I'll have to take on.

Meanwhile you are right about 'loss'. It is a loss worth mourning, isn't it? I've been totally deaf in one ear since birth and, for the last eight years or so, dealing with mild/moderate loss in the other - but the hearing aids always helped and allowed me to get by. The sudden loss of most - or almost all - hearing in the right ear does impose a sense of loss, and I'm finding that strange and tough.

My real concern is about the future, I think. That is to say, how I will continue to do a worthwhile job, continue to develop what I do and do more interesting things? How can I continue to help the organisations I work with, and the people I love? More than anything, there are the things that have now gone that I can't get back - just yet. Like being able to hold a conversation with my eight year old son. He is (God bless him) inventing his own sign language just for us two. It's at the times when you least expect it - the moments when something simple and normal - happens that depend critically on hearing - that the 'loss' asserts itself most.

Last week my son's School held their carol concert in the chapel of Wellington College as they do every year. Alex sings in the Junior Choir. The fact that he knew that I couldn't hear him sing was tough.