The Butterfly Effect
Every so often, I get a request from Advanced Bionics to mentor a person who qualifies for a cochlear implant and has questions, or would just like to talk to someone who already has one. It’s strictly volunteer; I don’t get paid for doing it and I can choose whether or not to accept the mentoring opportunity. The majority of my mentoring has been done online, via email. This past weekend, though, I got the chance to talk with a fellow who lives in the area and was hoping to talk to a CI recipient face-to-face.
He and his wife came by and spent a few hours talking to me and Dave. We really enjoyed talking to them, and we found that we had a lot in common regarding this invisible ‘disability’ of ours. We were the first hard of hearing/deaf people he had ever met in person. I can remember what that was like, meeting my first hard of hearing (HOH) friends. Growing up, and into my early 30s, I had no friends or even acquaintances with hearing loss. I was the only person in school with a hearing loss (that I knew of, anyway). All of my family members, friends, boyfriends and my first husband were all ‘hearing people.’ It is such a relief to finally talk to someone who gets what it’s like to have people assume you’re stuck up or rude because you don’t respond to them, someone that knows what it feels like to have people assume you’re doing fine because you can hear a certain sound…but they don’t get that just because you hear it doesn’t mean you understand what you’re hearing.
In late 1996 through 1997, I was a single mom with two young children, working full time and getting used to doing things on my own. I was going along okay, feeling pretty proud of myself for my coping skills, when I got a raging, horrible ear infection in my good ear. (At this time, I had a severe loss in my left ear and was profoundly deaf in my right ear; I wore a hearing aid in my left ear, which was my ‘good’ ear.) I used to get periodic middle ear infections from having an ear mold in my ear all day long; they were painful but I could deal with them. This one, however, was beyond anything I’d ever experienced. I was running a high fever and in so much pain that all I could do was cry. I saw my ENT, and he actually had to place antibiotic-soaked cotton down inside my ear with some kind of instrument (I cringe just remembering this!) because my ear canal was so swollen that drops would not go down inside to where they needed to be. He also prescribed antibiotics, as well as Vicodin for the pain. Usually I can’t take Vicodin; it makes me sick to my stomach. I broke the pills in half and, let me tell you, it was the only thing that would even bring me a touch of relief.
I was off work for a week as I dealt with this, and my parents took the kids for me. The cotton deep inside my ear, combined with the fact that I couldn’t wear my hearing aid, rendered me completely deaf during that time. It was my first experience with total deafness, and it scared the crap out of me. I realized I was not really that far away from being deaf, and that I had no coping mechanisms in place for it. That’s when I got my bed shaker alarm clock, and started looking into online support groups for people with all forms of hearing loss. That’s when I got my first deaf and HOH friends.
I joined a mailing list, which still exists today, called the Say What Club (SWC). When I introduced myself, I explained my hearing history and what I was currently dealing with, and expressed an interest in learning sign language. Everyone was so welcoming and friendly, and I was amazed at how good it felt to talk to other people who knew what it was like to deal with hearing loss. One of the people who welcomed me was Dave, and that is how we met. He sent me a huge box filled with books and videotapes on sign language, since he used to teach it. I was blown away by his thoughtful gesture, and I really liked the way he expressed himself in writing, so we became fast friends.
At the time, I was casually dating (a couple guys from work, a couple people I’d met online) and really having no luck with it. I was getting fed up with dating in general and was about to swear off any kind of love life for a few years, until the kids got older. It wasn’t worth the hassle. Dave was just a few years out from his bone marrow transplant, and he felt it wasn’t fair to get into a relationship with someone because who knew if his leukemia would come back or if he might have some other complication. So we were just friends, writing emails and meeting up with other SWC friends in chat rooms. I can remember kind of yelling at him about his reason for not dating somebody – I mean, we could all die tomorrow…is that a reason to pass up an opportunity for love if you find it?
As 1998 came along, I could tell he was starting to like me as more than a friend. We hadn’t met in person, and I tried to discourage him because I knew what it was like to meet someone in person after knowing them online. You kind of fill in what you don’t know with your ideal image of what you want in a person; once you meet them for real, it’s kind of hard for them to live up to that imagined ideal. He basically blew off my warnings, sure that everything would be just fine. I was nervous, worried that he’d meet me in person and be truly disappointed, and then our friendship would be awkward and weird. I didn’t really tell anyone about our burgeoning relationship; this was back when meeting someone online was fairly rare and everyone was convinced that the only people who would do that were serial killers and psychos.
We made some tentative plans, and then our actual meeting ended up being really spontaneous. It was the end of March, and my plans with a friend from work had fallen through. It was early Friday night, the kids were at their dad’s for the weekend, and Dave called. As we talked, I mentioned my now-free evening and he said, “How about if I come over?” I thought he was joking, but that’s exactly what he did! He drove from his apartment in Michigan which, at the time, was over four hours away. He got a little lost so he didn’t arrive on my doorstep til nearly 11:00. This was before the days of cell phones (especially for hearing impaired people) so I just had to wait and wonder if he would ever show up.
When I opened the door, I was so scared. I mean, what if I hated this guy in person? And he was there, in my house…how would I get rid of him? It wasn’t like a date in a restaurant, where I could make an excuse and leave. My first thought was that he was shorter than I pictured; I was standing a little above him in the doorway, while he stood further down on the porch. When he stepped in, smiling broadly, I realized he was actually the perfect height for me (I’m barely 5’1” and he’s 5’8”). We hugged, he proudly showed me the WebTV device he’d brought along (this was how he accessed the internet — no computer for Dave) and we started talking. It took me about five minutes to realize everything was going to be just fine; he was basically the same in person as he was in email – funny, articulate, interesting and kind.
That was nearly fifteen years ago and the rest, as they say, is history. We dated long-distance for a couple of years, and then Dave moved here from Michigan. We got married Feb. 2, 2002 – we’ll be celebrating our eleven year wedding anniversary in just two weeks. All of that from one chance gesture, reaching out to connect with people in the same boat as me. Ain’t life grand?!
Posted on January 18, 2013, in Cochlear Implants & Hearing Loss, Family and tagged Advanced Bionics, hearing loss support, meeting online, mentor, Say What Club. Bookmark the permalink. Leave a comment.