Sarah Profile picture
15 Sep, 20 tweets, 4 min read

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! 🤟🏻🧏🏻‍♀️

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More from @sarahlovesears

22 May 19
I had my last auditory rehab appointment with my SLP today, and I have some thoughts on that. (TL;DR: it was a positive experience, but it came with high demands on my time/energy. I love my CIs, but what I love more is having options for communication in 2 languages.)
I began auditory rehab immediately after my 2nd CI was activated in January. The day after I finished editing and sharing my activation video with commentary in ASL, which was about 3 days post-activation, I had my first session.
I’m lucky that my insurance paid for 4 months of sessions. I’m also lucky that because I’m an Au.D. student and know where to look to find SLP services in my area, I was able to see a SLP who knows ASL and is accepting of the fact that I communicate daily in both English and ASL.
Read 18 tweets
17 Mar 19
This is a thread about accuracy of information in both academic papers *and* media reporting on academic papers, and it's going to open a can of worms. I'm afraid people are going to be angry with me. Please read the whole thread before you start eviscerating me. 1/22
Because of that, I'm going to state a few things upfront: 1) I come to this conversation from the perspective of a 3rd year AuD student. 2) I come to this conversation as a deaf person. I wasn't born deaf. I have a progressive hearing loss and was hearing for many years. 2/22
3) I'm a bilateral CI user, and I've had 2 very different outcomes with my 2 CIs, but I'm glad I have them. 4) I'm a (clearly non-native) signer, and I am in 100% support of deaf and hard of hearing children having full access to sign languages. Those are my relevant biases. 3/22
Read 26 tweets

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