woman with cochlear implants

Self-perception has been on my mind lately. I’ve been thinking about how my cochlear implants changed how I see myself and my deafness. Before my implants, I was very tough on myself. I took full responsibility for communication and felt guilty when it would break down. I felt I should try harder to hear and socialize normally.

Truly, I had a twisted perception of my reality. Why did I think I could try harder to hear? I had profound hearing loss in both ears. Did I never fully accept my hearing loss? Had I not devoted my life to the treatment of hearing disorders, including counseling others on self-advocacy and overcoming limitations through communication strategies? After all, I tell patients all the time that hearing aids do not solve all hearing problems.

I think this knowledge and advice came too late after growing up hard of hearing. I was the only person in my school and the only child in my church or neighborhood that I knew to have hearing loss. I eventually befriended another child with hearing like mine later in my childhood. This was great for both of us, but one person is not a community. I was growing up primarily in a hearing world.

So, did I accept my hearing loss? I will say that I accepted it as a part of me, but I still believed it was something I had to completely overcome. I’m a perfectionist and I was very hard on myself in this regard.

Writing this, I’m feeling mixed emotions. On one hand, I think my refusal to excuse my hearing loss may have pushed me to be more successful. On the other hand, my chronic stress and guilt over failed social encounters likely imprinted on my personality in a not-great-kind-of way.

I struggled with many feelings, both as a child and as an adult, that I can now clearly label as anxiety. These feelings were with me for so long that it was as if anxiety is tightly woven into my life and I just assumed this was normal. How could I know I was carrying this anxiety if it was natural to me?

My parents always said I was never far away as a small child. I typically stayed glued to their side. Before seatbelts were well understood, I would sit in the center of the floor in the backseat with my head between the front seats, trying to hear everything my parents said. Was it childhood curiosity or anxiety? Maybe both. Certainly, later in life as my hearing worsened, my anxiety was amplified and undeniable.

Let me see if I can paint a picture of a typical day before my implants. For one thing, when I woke in the morning, I would insert my hearing aids immediately — not after sitting up in bed or after a trip to the bathroom. No, I had to be wearing them within moments of opening my eyes.

There were times I fell asleep with my hearing aids in and pulled them from my ears during the night. In the morning when I could not immediately find them, I’d frantically tear apart the bed and yell for help. My husband has saved many a morning by quickly locating the hearing aids in the covers or under the bed. Logically, I knew the hearing aids would be found but I would find myself near tears.

I lived in a state of constant alertness. Seeking out all the noises, often asking, “What was that?” for any sound, even the most mundane of noises. So anxious was I not to miss what was happening that I would drive myself and my husband crazy with inquiries. I didn’t hear well enough to recognize sounds from another room so I often would drop projects and seek out the sound. Looking back, it was a chronic issue. My husband would sneeze, cough, or drop something and I’d be in the doorway within seconds asking, “What happened? What did I miss?” After years of reporting mundane noises, impatience started to creep into his voice.

I remember feeling tired at the end of a workday and my husband would say, “Why not remove your hearing aids and relax?” I thought this was an insane idea. Why would silence be relaxing? I wanted to stay connected. I had to stay alert. I somehow convinced myself that it was my duty to be as aware as possible at all times. The only time I would release myself from this burden was when I took them off for bed at night.

As my hearing worsened, I developed the dreaded phone phobia. This anxiety was enough to cause some physical symptoms. The very sound of the phone ringing would cause my heart rate to increase. If I had to take a call, I felt so much apprehension, almost like stage fright. I was near nauseous. I didn’t find captions to be very helpful on the phone since they were so delayed, and I had less and less luck with phone modifications as my hearing declined. I prayed the other person would be kind. I would ask them to slow down, tell them about my captioning phone, and ask for an email or any written options so I could finish the call early. I would sometimes bow out in embarrassment saying, “I am so sorry, I simply can’t hear you, I’ll have to transfer you to someone else to get this information.” Even reminiscing about my phone anxiety now makes me anxious.

Another thing I experienced anxiety over is loss of awareness. As my hearing declined, I no longer heard softer or more distant environmental sounds. I didn’t hear approaching noises. I didn’t know people were in the room with me if I didn’t see them and I didn’t know how close they were. Often at home, my husband would speak loudly to get my attention. I proclaimed, “You scared me!” fairly often in our home. Outside the house, I would pick up on cues when people would stiffen up or look in another direction. When I didn’t hear anything, it would make me feel disconnected. This disconnection would just further fuel my anxiety. I can see why people have service animals — not just for safety but also for peace of mind.

I think about how that anxiety likely led to fatigue, depression, and social isolation — all of which I’ve experienced in waves throughout my life. As a child, I was admitted to the hospital twice due to severe fatigue. The medical staff could not deny the physical manifestation of it. Blood work and symptoms were first thought to be leukemia. Thankfully this and many other scary illnesses were ruled out. It took over a year of medical studies to reach the diagnosis by exclusion: Chronic fatigue syndrome. I now theorize this severe chronic fatigue was a result of adrenal burnout. It is still with me today but, as an adult, I’ve learned ways to manage it and I’ve built my life in a way that accommodates my needs.

Let’s circle back to self-perception. The reason I decided to write about this topic is that I’ve surprised myself with this seemingly contrary realization….

I am both more and less deaf, and I’m less anxious. I’ve started to recognize the lessening of anxiety over time. I ask myself, “How can this be, and does it even make sense?”

The device that allows my implant to work, the processor, comes off my head when I go to bed, take a shower, or just take a break from sound. Without the processor in place, I am completely deaf. Complete deafness is not something I have to fight. It just is. I can’t change it, and I can’t “try harder to hear.” When the processor is off, I’m deaf. I hear no sound. Somehow, it’s peaceful for me now.

When my processor is on, sounds of the world stream in and I am connected to everything at once. This connection far exceeds what hearing aids could achieve for me. It grounds me. It relaxes me. It is the sound I always craved but rarely achieved with hearing aids.

I won’t go so far as to say I don’t have anxiety around hearing anymore. I still have some. For example, I recognize that I still have social anxieties. However, I think they may stem more from a lack of experience than a fear of not hearing. I still struggle to hear in noise and get frustrated in situations that are challenging. Old phone anxieties creep in during a challenging phone situation because of a bad connection, rapid speech, or accents I’m not used to.

The anxiety of living with deafness is melting away day by day. I am more relaxed in silence and in sound.

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