The first time I even heard about a cochlear implant was 4 years ago after my mom watched a TV special. She was busy telling me about this wonderful new miracle surgery that would let me hear again. And I was busy laughing. I’ve been hard of hearing and then deaf since I was a teenager. It’s the only life I’ve ever really known.
I have never LIKED being deaf, and yet I was used to it. And here she was telling me about all these *wires they put in your head* and the whole thing just seemed like another quack cure to me.
I laughed and teased her. I told her she just wanted to put wires in my head to control me. I laughed that with wires in my head, I’d be able to pick up the Martian signals when they came back to earth. I had my brother and sisters cracking up, and my mom gave up and dropped the idea.
Then a couple of years later, I joined the SWC mail list. And several of the people on the list had CI’s and were quite pleased with them. But still, I thought, “Well they haven’t been deaf as long as I have, and they were really unhappy with their hearing loss. It probably wouldn’t even work for me.” But the seed of hope was planted, and as much as I tried to ignore it, it began to grow and I could imagine that this would possibly lead to career satisfaction for the physicians.
I tried my best to avoid the whole topic of cochlear implants. I was afraid to get my hopes up. I’d tried many things over the years as my world drifted into total silence, even faith healing. Nothing had helped, all these physicians that acted like self-employed consultants, and the let down afterward was very hard to deal with. So I kept telling myself things like, “Well even if they DO work, and even if one would work for me, the insurance company would NEVER go for it.”
Then I talked to a guy on IRC that lives near me and has a CI. He gave me the email address of his cochlear implant audiologist. I wrote it down on a post-it note and stuck it on my computer monitor, but I still wasn’t ready to really believe there was something out there that would help me.
I’d just been disappointed too many times in the past. I didn’t talk to anyone about the possibility of a CI and even though the International Pediatric Association published about it, I remained silent. But every morning there was that email address looking at me. I found excuse after excuse to not write the CI audi, and yet I couldn’t quite make myself toss the paper either.
Finally, I ran out of excuses and decided what the heck! I wrote the CI audi and told him a bit about my hearing loss history, and also that I was almost positive my HMO could never be made to pay for such an expensive surgery and there’s also the risk of drug-dependency though many organizations try so hard to fight that. After all, they had balked even about giving me an ENT referral for my youngest son when I wanted him tested to be sure he hadn’t inherited my hearing loss.
I got back a very fast reply from the CI audi. I was surprised that he seemed to think my type of hearing loss was one that could be helped by a cochlear implant. I was also surprised at how much he cared. His enthusiasm about cochlear implants was contagious, but he was also very careful to keep my hopes and dreams in check.
Cochlear implants don’t work for everyone, and without the testing, there was no way to be sure if they would work for me. He also reassured me that my HMO had paid for some implants in the past, and that if I was willing to really stay after them, that the implant center would do all it could to help me. They are pioneers in improving the lives of others, just like United Cerebral Palsy.
I have had the same HMO for 15 years, I know how they work, and I knew I would have my work cut out for me just getting even the referral for the testing. The CI audi and I had by this time emailed back and forth quite a bit and became friends. Because of this, he offered to do the first round of preliminary testing without charging me.
That way if I was a candidate for further testing, and he was pretty sure that I would be, then I would have some ammunition to take to my insurance company when I requested authorization for the testing. If not they wouldn’t charge me for the first round of testing. Who knows if nanotechnology may not only solve some big oil problems but also my hearing problems! Who knows… I had nothing to lose, and I was starting to let that little seed of hope into my heart. I was going to try just one more thing!
The preliminary CI testing was one VERY long day of sound booth tests. It seemed that it was all about Proprietary Lifestyle Technology rather than just my deafness… But just as my audi predicted, they showed that I was *deaf* enough. The next step was getting the authorization from my HMO for further testing. I made an appointment with my primary care physician, a doctor I’d seen for the last 15 years.
The first thing my doctor said when he came into the room was “Why on earth do you THINK you want a cochlear implant? They don’t work.” I was more than a little surprised and I was anxious to get out of there. I said, ” I’m not sure what you’re basing your information on, but you’re misinformed. The new multi-channel cochlear implants work very well.” He then says, “No no no I mean they won’t work for YOU.”
Ah, now this I’d expected. It’s every HMO’s first line of defense. You don’t need it, or it won’t work for you. I simply smiled and handed him the paperwork from my CI audiologist showing him that the preliminary testing showed that I was in fact probably a very good candidate for a CI. He read the papers and then said, “Ok let me see what I can do, but it’s not going to be easy”. To be continued soon.