As a hacker, I thought other hackers might be interested in my journey to getting a cochlear implant. It’s still the early stages, but I thought I would document this wonderful journey to the land of being able to hear.
I was born in New Zealand, in 1988 and had moderate hearing loss since birth. The reason that my ears refuse to work lies in a mitochondrial disease (mutation A7445G). In the last 5 years, my hearing loss has progressively moved to the ‘severe’ level.
This specific mitochondrial mutation causes people in my family to go progressively deaf and there’s a chance for a severe skin disorder, known as Palmoplantar Keratoderma.
My family was quite lucky that we have a wee bit of research into our specific genetic mutation (A7445G) thanks to Marion Maw and Denise Allen-Powell who worked for the Biochemistry Department at the University of Otago. From their studies, they found that there were four generations of my family with the A7445G mutation and the pattern showed that it is a maternal mutation, i.e. it is carried out by the females of the family and passed from one generation to the next.
The most interesting thing about myself and other family members was that none of us relied on hearing aids. We are all master lip-readers, and body-language experts. Growing up, it was natural to pay closer attention to someone and concentrate harder to understand them than it was to “listen”.
Quite recently I applied for a cochlear implant here in New Zealand and went to my first appointment with the Southern Cochlear Implant Programme. Here, my eyes were opened to exactly how deaf I was.
In the appointment I was asked to sit in front of a television and repeat sentences of what the person on the screen said. I got 90% right. Silly deaf person, you’re not supposed to be able to hear! So they turned off the picture, and still I got 90% right. (the funniest one I repeated was, “the farmer hates broads” but it was pests or something… oops)
The disbelief came when it was time to listen to singular words. With the screen turned off, I got 0%. With the screen turned on, I got 8%. That’s crazy!
The audiologist, who has had some extensive knowledge of my family (other members have had cochlear implants) explained to me that, the way I communicate is quite different. Because I don’t *use* my ears (because they’re borked) I make up for it in lip-reading, body-language and the big one: context. She said, that I am probably overworking myself just to understand context. I may well understand 8% of what someone has said, but based on the few words I heard, the way they said it, my brain would make up the rest.
I was flabbergasted at the insane level that my brain was helping me. (probably explains why I’m so dog-tired all the time). All this pointed me towards being a cochlear implant candidate, and because of the amazing success rate that the surgeons and this specific programme have had with my family members, I was told I’ll be the “ideal” candidate.
By candidate, I mean I’ll be on a waiting list (it’s a maximum of 3 years) but it’s all free. Paid for by the taxpayers (thank you my fellow kiwis).
My goal by documenting this process is that one day, when I have had a foreign body (shudder) inserted into my head, is that I’ll be able to hack it. Not the processor per se, but I can simply imagine the possibilities of somehow hooking it up to my Android… augmented reality cochlear implants anyone? Way better than Google Glasses 😉
If anybody has any experience with Med-El (Austrian) or Cochlear (Australian) … brand cochlear implants, please let me know. Choosing brands isn’t quite the same as choosing between Adidas or Nike shoes.
P.S. Google, I’ll be happy to test your new Google Ears when you make them!