In My Own Words: My electronic scare

By Rabbi Rachel Esserman

Electronics make our lives wonderful – that is, when they work. Those of us who depend on them due to disabilities can start to take them for granted, at least until they don’t work. That happened to me the other month with my cochlear implant.

Since the pandemic started, one of the first things I do in the morning is get dressed. As soon as my clothes are on, I put on my CI and my hearing aid. It’s so automatic I don’t think about it. But that morning something different happened: I hooked the CI behind my ear and connected the magnet to the one inside my head. Nothing. That’s what I heard: nothing! It’s important to remember that without the implant, that ear is now completely deaf. If the CI doesn’t work, I would be completely dependent on my other ear, which has a profound loss, even with the hearing aid. (The next category after profound loss is deaf, meaning no hearing at all.)

I told myself not to panic. Maybe something was wrong with the processor and the CI came with a second one. I switched it and I could hear! Big sigh of relief. But a moment later, I couldn’t hear anything. Then I could and then there was no sound again. That’s when I realized that it wasn’t the processor, but the cable that connects it to the side of my head that wasn’t working. That’s when I began to panic a bit, but I held myself together and called the company (using my captioned phone) that makes the implant. They told me there was another cable (but a different looking one) that should be among the things I was given with the implant. Fortunately, I found it.

Now, all I needed to do was order a new cable. The two pieces cost more than $300, but the person said my insurance should cover it. That’s when things started to get Kafkaesque. My ear surgeon’s office closed this past summer: he retired unexpectedly due to ill health. But my general practitioner could help put the order in. Fine, except my GP is a nurse practitioner. The person said that it has to be someone who can prescribe medicine. I said she does everything for me, including prescribing medicine, but that still wasn’t good enough. I needed to have a relationship with a medical doctor since the insurance required the person to be an M.D.

So, I called my doctor’s office and explained the situation. Sounds easy, right? But they aren’t making any appointments for the M.D.s in the practice. Ah, but my NP can talk to the M.D. about my problem and he’ll sign the form since he’s her supervisor. I think I’m all set until I call the company back and am told that I also need an audiologist to sign off on it. Ah, but when the ear surgeon’s office closed, the audiologist had to find a new job. Even though I was able to contact her, she no longer works at an office that does CIs so she can’t sign off on that.

Thus, I arranged a trip to Syracuse to meet with a new audiologist. I’d been planning on doing that in the spring because I’m going to need to get a new processor. (Yes, it’s like a computer and next September it will no longer be supported. In real-people talk, that means I won’t be able to get it fixed or buy new parts for it.) The new audiologist was really nice. He downloaded the programs on my CI so they would be there for when I come to see him next year about the next processor. He also arranged for the new cable to be sent to me and quickly answered an e-mail I sent, so I’m really pleased.

While I was there visiting him, I asked the receptionist about seeing a new ENT because my local doctor’s office had sent a referral and I hadn’t heard anything. (You can’t make your own appointments. They get the referral and then call you.) It turns out that, although this was a big medical complex, the doctor connected to it only does CI surgery through his private practice. And no, they don’t share referrals, so my local doctor had to send one directly to his private practice. Guess what? I got turned down! He isn’t accepting new patients. Sigh, I only saw my previous ear surgeon once a year, but it really pays to already be a patient of one in case anything goes wrong.

The big problem is that there are very few surgeons who perform CI surgery. I decided not to deal with this now because the winter months are coming, but next year I’ll try to connect to a doctor in Rochester, if one of the doctors there will accept me as a patient. Why does having to go to Rochester make me sigh? I can easily do the trip to Syracuse on my own. Traveling to Rochester takes twice the amount of time. Oh, well, I’ll deal with that in 2022.

Living with the CI makes my life easier, but it’s also been vital during the pandemic. Before I depended on lip reading even more than I did on the sounds that came through my hearing aids. But you can’t lipread when someone is wearing a mask; without the CI, I would have to ask people to write down what they were saying. I’ve amazed myself and other folks by sometimes understanding what a person wearing a mask says, which would have been impossible before. I’m sure, at some point, I’ll take the CI for granted again. But right now, I am so grateful every day that it works.