I’ve been lying to you all.
I’ve been introducing my hearing loss story thusly: “I failed my first hearing test at five but didn’t get my first set of bionic ears until I was twenty-three.” But that’s not true. I didn’t fail my first hearing test at five.
Because I never completed my first hearing test.
The Reeves School did hearing screenings for all students in the child’s garden. When it was my kindergarten class’ turn, my screening was cause for concern. So my mom made an appointment at Massachusetts Eye and Ear infirmary for wee Brad. No small part of her was expecting this. My father already had hearing loss. But that expectation didn’t mean things would be easy.
I don’t have any memories of that test. But boy do I have feelings. No, there I go again. Lying to you. I don’t have feelings. I have a feeling. Fear. I remember the fear spiking as I was separated from my mom and ushered into the isolation booth. I remember the fear rising as I climbed up on the chair. I remember the fear exploding as the air inside the booth popped when the door was sealed shut. I was a bawling howling panicking mess. And the test hadn’t even started.
I wanted my mommy.
She was on the other side of the window that I could barely see over. (Believe it or not I was short once upon a time.) I don’t remember if I could see her or not. Probably not. It’s tough to see through tears.
My mom had told me that she demanded to be allowed into the booth with me. My mother’s big anger belies her 5’2” stature. I’ve seen her dress down men bigger than my 6’2” with ease. But this was 1986. It was tough to be a woman in a doctor’s office (I imagine it still is). She was forced to compromise. She planted herself right next to the audiologist on the other side of the window.
Like I said, I don’t remember if I could see her or not. Most likely not. Because my crying soon reached a crescendo. That’s when my mom called it. She demanded I be freed from the box of silence that still makes my heart race, my palms sweat, and my breath hitch to this day. The dual challenges of a yelling mom and a bawling child were too much for the audiologist. She acquiesced.
That was just the first time my mom helped me with my hearing loss. The second time was mere minutes later. The doctor blamed me. He said I wasn’t trying hard enough. He said I needed to get back in that box and finish the test. My mom told him where he could stick that thought. And so we left MEEI with no hard proof but plenty of paternal and anecdotal proof.
What followed was a childhood of making Yoda mad. She tried. She tried her best. But I wasn’t having it. I wanted nothing to do with my hearing loss. I didn’t want to think about it. I didn’t want to acknowledge it. She got me an ASL book. I said nope. She looked for a lip-reading course. The world said nope. She had more success with my teachers. She would always speak to every teacher every year to tell them about my hearing loss. If the teachers tried, they could only do so much. But the challenges of having hearing loss in school is a topic for another day.
I still had a good bit of my hearing, I was starting to make friends around the neighborhood and at school, so a Deaf school wasn’t for me. Even if there was one to go to, most Deaf schools are residency schools. I was a timid kid and didn’t have the emotional resilience to go away to school. There was a dearth of support groups for hearing loss. The HLAA Boston chapter wasn’t founded for almost another 20 years.
My mom did the best she could.
She’s hardly to blame for my being recalcitrant to her help. She’s most assuredly not to blame for the support desert for hearing loss that we lived in. In fact, that still-arid atmosphere is one of my motivations for my hearing health advocacy. My mom didn’t know where to find the resources, to find the community she needed to help me. I’m now in that community, supporting the technology for the HLAA Boston chapter. I’m now a resource, talking about my hearing loss on Hearing Things with Julie and Brad.
Who I am is due, in no small part, to the lack of hearing resources, the absence of hearing loss communities that my mom struggled with during my childhood. We’ve both bemoaned that situation. But things have changed. I have changed. I think about my hearing loss all the time. I acknowledge it when I have the energy to do so. I also acknowledge the struggles my mom went through trying to help me. You could say I do what I do to honor my mom’s struggles.
The world needs to change.
Be the change you want to see.
It’s gotta start somewhere.
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