Thread by @sarahlovesears

Thread

3 years ago today, my first cochlear implant was activated. This is what I wish I’d known then.

Context for those who don’t know me: I’m a deaf audiologist who uses 2 CIs. Before that I was a long-term hearing aid user. I communicate in spoken/written English & ASL. 1/

I got both of my CIs *while* I was studying for my AuD. I spent well over half of my AuD program learning how to hear with CIs. I wish I’d known how hard that would be. Completing an AuD program is challenging enough without getting implanted twice along the way. 2/

I wish that I’d known how frequently some person would tell me, “Of course I don’t expect you to hear normally!” and then a few days later be frustrated with me for not hearing things. I’m glad to have so many supportive people in my life who don’t expect that of me. 3/

I wish that I’d known my second CI would turn out much better than my first. My right ear, which I got implanted first, is more medically complex than my left. The outcome for my right was still much better than what I had with a hearing aid, and now I’m okay with it... 4/

...but at the beginning I had a lot of frustration. I knew about CIs as an AuD student, but many other people were telling me that certainly I’d be “almost like a hearing person” with my first CI because I already had spoken English fluency. 5/

Having to explain to people constantly that spoken language fluency isn’t the only ingredient in a successful CI outcome... that became tiresome quickly. I wish I’d known how many people would tell me dismissively, “At least you don’t haven’t develop language with a CI!” 6/

I wish I’d known that my not-so-great CI outcome for my right ear wasn’t my fault. I used my audiology knowledge and tried everything. I heard more than I did with a hearing aid but still not as well as others expected me to... 7/

...and I was told in subtle and not-so-subtle ways by some that maybe I was signing “too much” and not listening enough. Or that maybe I didn’t want a good outcome and I got my first CI for the purpose of being negative about CIs and saying that they “don’t work” when they do. 8/

It wasn’t until I had a great outcome with my second CI that those same people started to believe my difficulty with the first CI. I wish I’d known that I’d get all of those messages from people in my life. I wish that I hadn’t blamed myself for what I couldn’t control. 9/

I wish I’d known that my first and second CI activations would be opposite experiences. Although activation for my second CI went well and was a positive experience overall, activation for my first CI was a stressful and upsetting experience. 10/

Problems beyond what is usually expected at a CI activation came up, it took a long time to get me to hear anything at all, and I spent most of the appointment crying because I thought I’d been through surgery for nothing. And the sound was not what I was expecting. 11/

I wish that I’d known I would have a much better experience with my second CI and that in time I would feel better about my first CI. I wish that I’d known how challenging all of the hard parts would be to explain to other people when seeking support. 12/

Most importantly, I wish I’d known at the time of my first CI activation that: 1) I need no one’s permission to use CI technology in the way that works best for me rather than someone else’s way, and 2) I am still me and still deaf. 13/

At the time my first CI was activated, I *told* myself that a lot. I said it often to other people too. I think I was trying to make myself believe it because I was regularly encountering the opposite message. But believing it emotionally took a while. It wasn’t automatic. 14/

The social-emotional aspects of using CI technology: that’s something I wish *other* people knew and understood. This technology is great, but using it can bring up identity issues, difficult changes in family dynamics, and other challenges. I’ve experienced all of this. 15/

At this point in my life, I’m happy with my CIs. I still don’t hear very well with my right one, but it’s still better than having a hearing aid on that ear. And binaural summation makes my right one worth continuing to use. I’m very happy with my left. 16/

At the same time, taking my processors off at the end of a day is like a slice of heaven. Such a relief to have silence after a long day of listening. In some ways, my CIs make me feel more deaf: I like the contrast between the audibility they give and my natural silence. 17/

What I hope for most on this anniversary of my first activation is more nuanced conversation about CIs. Too often, this technology is discussed in extremes: CIs are wonderful or CIs are harmful. Neither of those perspectives tells the whole story. 18/

If you see this thread as negative, take a moment to think before commenting. CI users shouldn’t be afraid to discuss CIs realistically: good and difficult parts. Being realistic doesn’t hurt anyone. It helps people who are considering CIs to develop realistic expectations. 19/

Anyway, happy third birthday to my fake hearing. That first activation day is a day I’ll always remember with mixed emotions. Probably will always be meaningful in a weird way. Not as meaningful as my memories of learning ASL, though! 🤟🏻🧏🏻‍♀️