Monthly Archives: November 2009
“You don’t sound like you’re deaf.” Since I’ve gotten my cochlear implants, I get this a lot.
A few weeks ago, Dave and I were talking with someone about hearing loss. I was explaining how my CIs worked and that when I take them off, I’m totally deaf. He looked amazed and said, “If you hadn’t told me, I would never have known you had any type of hearing loss at all.”
“Hang on” I said, as I slipped the magnets off my head and let them dangle down to my shoulders. Then I continued speaking. “I can’t hear myself talking now, but Dave and Paige tell me that my voice changes when my CIs are off. They can tell when the battery dies or I’m not wearing my CIs at all. Can you tell the difference now?” He looked stunned. He could obviously hear the difference.
One of these days I’ll have to tape-record myself talking with and then without the CIs, so I can hear the difference too. It’s like my little parlor trick, to actually prove that I’m deaf. Does anybody else ever do this?
I think I’ve been cursed with “what do I write about?” syndrome. I’ve noticed it seems to hit most people who started a blog when they began researching cochlear implants. First you’ve got the research and testing to go through, then the surgery, recovery, activation, mappings, hearing new sounds…and then what? After a while your hearing (or lack of it) is no longer the focus of your days. What is there to say?!
When I started my blog, it was a way to express the many different ways I was affected by suddenly going deaf. I felt like I was adrift, all alone, not a part of regular hearing society or the culturally Deaf community. It’s not a common occurrence so I didn’t have people locally to reach out to who could really understand what it was like. So I wrote, and it helped more than I ever imagined.
Now my life is just day to day stuff, no real drama. But I’ve always enjoyed writing, and I had to make a choice: do I keep writing, just not always about hearing loss related topics? Or do I just leave this site as-is, for people who are just starting their own research into cochlear implants?
It’s funny because I’ve read so many similar posts recently on other blogs I keep tabs on. I know I’m not alone in this dilemma. And anyway, I’ve decided to just keep on writing. If I’ve got something to share that relates to my CIs or hearing loss, it will be here. Otherwise I’ll just be writing about my day to day life. I think this may make my site drop off of the aggregator sites that are deafness-related but I hope you’ll add this site to your feed reader or bookmark me and check back, to keep in touch.
After all that explanation, the ironic thing is that I do have something hearing-loss related to share!
I’m sure we’ve all heard plenty about the flu this year, especially H1N1. My daughter is 15 and in high school, and they’ve been sending home all kinds of information about the flu. So far they haven’t closed her school for flu-related illness outbreaks, but according to her there have been lots of students and staff coming down with it. A 14 year old girl in a neighboring town died recently after coming down with H1N1 so the schools around here are being really cautious. And of course, Paige came down with the flu at the end of October. It was really inevitable, considering all her friends were sick around the same time.
One thing my kids inherited from me is the fact that we always run high fevers; none of this 101 F stuff…we run them around 103 or 104. This is exactly what happened to Paige; her temperature hovered around 103.5 and she was just miserable. But for the first time ever, she was afraid of it affecting her hearing. She was laying on the couch, nearly in tears from discomfort and just distraught in general. I heard her say, “What if I lose my hearing because of my fever?” It just broke my heart.
My kids have never seemed worried about losing their hearing; if they have, they’ve never expressed it to me. We really don’t know what caused my hearing loss, which as far as I know has occurred in three separate incidents (as a toddler, in 1993 and in 2008). It was always assumed my original hearing loss was caused by a high fever I had when I had roseola as a toddler. It was high enough to land me in the hospital, on a bed of ice. My mom still talks about how she would sneak me off of the ice (when the nurses weren’t around) and hold me to her body to warm me up, because I was turning purple from the cold. I think my temperature was around 106. Paige remembered this, and for the first time ever, I saw the fear on her face as she considered the possibility of losing her hearing.
I reassured her, of course – we don’t even know if the fever caused my initial hearing loss, and the fever I had was much higher than the one she currently had. Still though, I had a fleeting glimpse of what it would be like, as a parent, to find out your child has hearing loss. Even just knowing she was scared of the possibility made me want to protect her.
She came through just fine, by the way – she ran a high fever for two days, had another day of very low-grade fever, and then it was over. Amazing how kids bounce back!