Hearing provider comforts patient during Cochlear implants

Where will I go with this map? My first trip was to hell and back.

Until I became a cochlear implant user, the term “mapping” was a pretty mysterious word. I understood that it basically meant that the implant was programmed and fine-tuned but I didn’t know how it was done or what was involved. I admit I was ignorant of the practice of mapping implants as I’d never seen one even in graduate school. My first experience was a personal one and it was terrifying.

Some may wonder if the YouTube videos with people hearing for the first time are accurate, and maybe for some they are, but in my case, my activation video was a sad and depressing watch. In fact, we deleted it — quickly. I received my first map on activation day — July 10, 2018. While I sat with my implant processor plugged into a pod attached to a computer, I started to feel more and more anxious. I was deaf to all around me, my hearing completed gone from a “natural hearing” standpoint in my left ear, my other ear unaided — during the mapping activity, my hearing aid was turned off — and my processor was not yet attuned to environmental noises. I was alone in my silence and my thoughts were not heading to a good place.

All I could do is wonder was, this normal, am I doing well, am I hearing, what do all these beeps mean? All I could hear were tiny electronic sounding beeps getting progressively louder. For a span of time that felt like an eternity, but was probably around 30-40 minutes, I sat and rated the loudness level of these tiny weird beeps. I was quickly feeling fatigued and almost lightheaded from the effort of focusing on these buzzy beeps. I started to fear that I was not doing well because it took so long. It seemed like everyone in the room was staring at me waiting for me to do something. I felt the weight of their stares. I started to just look straight down at the table and try to ignore that there were other people in the room. I was surrounded by people but felt alone. I thought I might cry and I almost did when the processor was finally turned on.

Finally, the mapping was completed, and the processor was turned on but all I could hear was a loud buzz and feedback. The buzzing overwhelmed me like a bright light. It was as if I exited a dark theater into the brightest summer sun, only I wasn’t adjusting, and it wasn’t getting any better. I felt a lump in my throat that got even bigger when my audiologist started talking.

To this day I don’t know why I didn’t break down and cry when I was activated. A rush of dread set in and I was falling farther into my regret by the minute. The audiologist sounded so far away, so thin and squeaky… her voice did not even seem human! Was she even talking in English? It was hard to know. I didn’t hear any speech sounds, only weird electric hisses, buzzes, and squeaks.

I hated it. I don’t think I’ve hated many things in life as much as I hated the sound of my implant.

I focused hard on her lips and realized she was trying to encourage me, trying to get through the haze of negative feelings that she probably read on my face like a book. She wanted me to know it was normal to not understand speech, that it takes time, and that it’ll get easier. I did not believe her because, I am sorry to say, I lost faith. I remained without faith as I walked out of the audiology office and got into the car to leave. I was numb, dumbfounded, angry, and feeling alone.

My husband was beside me the entire time, holding my hand, encouraging me, going with me to all my appointments and yet it felt as though I was alone. Why? I guess I felt that he can’t know, his hearing is normal, he won’t understand. It’s not really fair to him but it was a reality in my mind at that point. I wondered: will anyone know what I feel?

When faced with this type of challenge I figure there are two ways to go… panic and depression or persistence and faithfulness. I am ashamed to say when I left the office that day, I was in panic and depression mode. I felt pangs of regret. I recalled failure stories of people telling me it didn’t work, and people saying they never used it and wanted to explant. Thankfully, I jumped into action. I think I knew instinctively that my emotions were not serving me well and I started to reach out to others. I left messages with family, friends, audiologists, other implant users, consumer support groups, and my business networks. I posted my need for support on Facebook. My inbox flooded quickly with replies. Each reply helped me gain footing and climb out of the dreadful pit of despair I had dug for myself. The loneliness started to fade. I quickly bonded with others who felt the way I felt and experienced similar results with cochlear implants.

Admittedly, I can be willful, and I can put on emotional armor but I soften fast when others push. I received the push I needed. I am blessed to have a support system in many places. My husband and family, friends, audiology network, my patients, allied peers, and neighbors all rallied for me. They lifted me up. I had my ugly cry and after that, I turned a corner. I felt renewed faith. The side of me that knows all about hard work and persevering reclaimed my mental space. I decided to face this come what will.

How long did it take me to make this switch you might ask? It took 12 hours. That may seem like a short amount of time, but it’s a span of time that still lives vividly in my mind.

Part 11: Adjusting

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