I know what you’re thinking…
I thought you said your first cochlear implant support group meeting would be your last.
And you’re right, I did.
Back in May I went to my first cochlear implant support group when they did a discussion on cochlear implants and dementia. It was extremely depressing and I felt the whole atmosphere to be rather negative. I vowed I’d never go again.
Well, things happen. I kind of lied.
It’s been a weird week.
I broke up with my boyfriend. If you read my blog on a regular basis, you’ll know I loved him very much. I still do. I think a part of me always will. I’m not going to go into the details about that here. Let’s just say it happened, it hurts like hell, and I needed to get out of the house.
A friend of mine, Wayne, helps to run the Cochlear Implant Support groups for the Haddonfield area (the ones closest to my home). We are friends on Facebook and Wayne and I talk on a regular basis. He knew that I had just broken up with my boyfriend and was really hurting, so he told me I should come to the next support group. He told me it would do me good to get out of the house and “you never know who you’ll meet” (I mentioned on Facebook how I needed to make friends. My boyfriend was not only my best friend, he was my only friend. Breaking up with him was more than just breaking up with a boyfriend, it was breaking up with my best friend, too). I kind of felt obligated to go after that. Plus, I figured it was a welcome distraction. Sure beats staying at home, feeling sad, and crying myself to sleep anyway.
The topic was actually pretty interesting. It was on hearing preservation after the cochlear implant surgery. You may remember me mentioning previously that I still had the same amount of hearing left in my ear post-surgery. I was interested in hearing what they’d say about that since the topic was definitely pretty relevant to me this time around.
Dr. Pelosi, assistant professor and otolaryngologist at Jefferson University, was the one doing the presentation. I have heard quite a bit about Dr. Pelosi especially when I did my early research for a cochlear implant surgeon. My first impression is what any newly single 20-something year old girl would think, “He’s really hot”.
Hottest doctor, ever?
But of course looks are not everything and I have a really weird thing with people who are highly physical attractive. I assume most highly attractive people are jerks. I’m not outright saying I thought Dr. Pelosi was a jerk. I didn’t think that at all, he seemed like a nice guy. I did however get the impression that he was a little coincited. But he was a nice guy and he was smart.
Dr. Pelosi made a lot of interesting points about hearing preservation post-cochlear implant surgery. There were many things I didn’t know like how the size and shape of the electrodes may play a role in hearing preservation. Also, the speed at which they insert the electrodes can have an impact. Dr. Pelosi said that thinner curved electrodes inserted more slowly may help with post-implantion hearing preservation as opposed to thicker, straighter electrodes that are inserted more rapidly. This is because there is a nerve by the cochlea that the electrodes are inserted near. Ideally, surgeons want to be as gentle as possible when inserting the electrodes so that they don’t hit that nerve. Hitting the nerve is what can cause a loss of residual hearing. With the thin, curved electrodes inserted slowly, there is a smaller chance of tearing or otherwise damaging that nerve.
The only thing I didn’t really like with Dr. Pelosi’s presentation was that he used a lot of really technical terms and big words. I felt like some of that was because Dr. Pelosi is a very young doctor — much younger than most of the people at the support group — and he may have done that to try to prove himself to them. But I would have rather he used less complex language that is easier to understand. I think had my surgeon who is older and more experienced, Dr. Wilcox, done the presentation I would have understood it a bit better.
At the end of the presentation a lot of people asked questions. I liked that the group of people were mostly different from the group that attended the first support group meeting I went to. They were more interested and less negative about cochlear implants. Most of the questions were about the electrodes and the hybrid cochlear implant which Dr. Pelosi also touched on. I realized that I didn’t know how many electrodes I was inserted with, so I asked Dr. Pelosi if that mattered. He told me it didn’t; all that mattered was that it worked and that I knew what kind of device I had which I did. I kind of figured that much.
Some of the people asked beyond stupid questions that I had to try not to laugh at. The whole “there are no stupid questions” can really be a lie sometimes. The stupidest question I heard was from a guy wanting to know why they couldn’t tune his cochlear implant electrodes to match that of a piano or something. Obviously he was a musician who lost his hearing later in life. He swore he knew exactly which sounds he was and wasn’t hearing and how it should sound.
Maybe I am being biased or unfair because I’m not a musician and I don’t know much about musical tones or piano keys, but this doesn’t seem right to me at all. No, you don’t know what you are or aren’t hearing. You’re learning the sounds. You can’t just pick and choose which sounds you do or don’t hear or receive. It doesn’t work like that.The whole cochlear implant thing is a process and you’ll discover new sounds over time.You can’t just wake up one day and be like “I want to hear this piano key today and this one tomorrow”. I feel like that should be common sense, which I felt this guy obviously didn’t have. Based on the look on the faces of others who attended the meeting and even Dr. Pelosi (who remained extremely professional and didn’t outright laugh in the guy’s face), they agreed.
After the meeting I made a point to talk to some people and connect with them. I won’t lie; half the reason I did this was for networking purposes…. I am writing a book about my experience, afterall! I need to build my connections so I can sell my book once I finish writing it and have it published. But I did genuinely enjoy talking to the people. They were all much older than me and most of them had very different stories. A lot of them lost their hearing later in life or had an illness that wiped out their hearing. I’m not sure any of them were born deaf or hard of hearing like I was. I swapped stories with them and also told one woman who was about to be activated good luck and not to be afraid. I reminded her that she might not like the way things sound initially, but if she worked with it, it would get better.
One thing I wish though is that more people my age would come out to these events. My mom told me that maybe I can help work on getting people there or maybe I can even look into starting my own group for people my age. I know that I’m not the only deaf or hard of hearing 20-something year old in NJ. I’m frequently told that deaf/hoh individuals are getting younger. I’ve seen them, too. When I worked at Walmart I saw many kids with cochlear implants. I always thought that was pretty cool. I also talked to a lot of people around town who have told me they have kids with cochlear implants. I think the reason why they don’t come to meetings or support groups is that they feel ashamed by it — they want to hide the fact that they even have an implant. That is sad to me. There is no reason to be ashamed. My cochlear implant is the best thing that ever happened to me. I talk about it all the time and I flaunt it because it makes me proud! I was given an incredible gift from God — the gift of hearing. I want everyone to know it. I just need to get more people my age to see things like that. I’ve always been deaf and loud, but maybe now I need to get a little louder.