Discover more from Breathing Space
The "Hi!" that broke me.
How the pandemic helped me let go of shame in my disability
[NOTE: We will be back to our regular newsletter content next week! This week is a personal essay I’ve been wanting to write for a while now.]
The first thing that left me was the voice of my son.
It was gone. His lips moved. Sound waves vibrated through the air to their destination only to find their home was a pair of ears that no longer recognized them.
The second thing that left me was my own voice.
The sound I once knew as, well, me—the real me, not the computer-amplified me I hear through hearing aids—became a low vibration that rumbled in my throat. But in my ears, only silence. Someone had muted me and threw away the remote. What did my speaking voice sound like in real life? I no longer remember.
The third thing that left me was the flitting of book pages.
I’d relied on my Kindle for so long that when, after more than a year, I took a physical book to bed and turned the page—the page. The page. Wait. Page. Page. Page. PagePagePage. Didn’t that used to do something? Make a sound? Register to me in some way? Page. Page. Page. Silence.
And I think that’s the one that stunned me. Because it was sneaky. My son’s voice had been leaving me for years along with lots of other sounds. My own voice had gradually been drowning inside of me. I didn’t mourn them for I’d watched them leave for a long time, growing smaller as the distance stretched. But those pages? Those pages that got me through my whole life as I immersed myself in story after story? Well, they’d gone completely quiet with no warning of their demise. Realizing I had lost them and in need of comfort, I reached out to my nightstand to frantically find and put my hearing aids back in my ears. Then I flitted those pages again and I let their song soothe me. Breathe. There it is. And there’s my voice. And there’s my son’s voice. The sounds are all still there. Even when I don’t hear them.
That’s the state of my existence today. Since birth, I am profoundly hearing-impaired and that’s something I’ve only come to terms with in my 40s. That’s something I’ve only truly reckoned with thanks to the pandemic.
It’s a hard thing for me to express what my relationship with my disability was prior to Covid because I’d never looked it in the eyes. I avoided doing so as much as I’ve always avoided being truly open about it. As much as I’ve lied to myself about it for decades. Every claim I made that I was unashamed of my hearing aids was etched in stark contrast to my constant efforts to hide them with my hair. My constant efforts to pass as hearing. My constant efforts to pretend I heard that thing you said.
Because I spent my life embarrassed to ask for things to be repeated, I have become such an expert at reading faces that I can hold a full conversation and react in the expected manner to everything said despite not truly comprehending anything that was said. It’s the most ridiculous superpower ever.
After college, I worked downtown in the marketing department for PNC. One coworker regularly chided me when I didn’t hear him—when he spoke to me with his back turned or in his usual indiscernible mumble. It became borderline abusive. Day after day. “You can’t hear.” “Get your ears checked.” “God, are you deaf?” I laughed. I evaded. I excused. I pretended. I dreaded interacting with him. Why didn’t I just say, “I’m deaf?” Why didn’t I advocate for myself? Tell him the truth and ask him to face me when he spoke? To enunciate? Why did I choose shame? To this day, I don’t think he knows about my disability. That’s on me.
In a later role, I was the communications director at a nonprofit and, guys, Franco Harris is about to make an entrance in this essay. Franco was on the board of directors and I needed to have a phone conversation with him on the very day both of my hearing aids broke. The actual nerve. Were I less ashamed, I would have merely emailed him to let him know that perhaps we could have that call another day. But it was Franco Harris. So I put my office phone on speaker, maxed the volume, and stuck my ear up against the speaker like a deranged alien that doesn’t know how phones work. (Beep-Beep-Beep. Hello, Mr. Business. Are we businessing now zeep zorp?) I managed. It stressed me out to the point of nausea. But I managed. Maybe? Maybe I didn’t, and to this day Franco Harris actually thinks I’m an idiot.
Those are perfect examples of the shame I attached to my disability. I wish I had been stronger. Prouder. More badass. No. Instead I was just pretty damn weak. For decades. I truly can’t think of a moment in my life from birth to my mid-thirties when I verbalized to a person, other than my now ex-husband, that I wore hearing aids. Not a date. Not a boss. Not a coworker. Instead I’d try to pass as hearing. Did my best to hide it for as long as possible. And I’d know the second a person would spy the molds in my ears or the aids tucked behind them. I’d see it in their eyes. Their surprise. I’d hear it in their voice. Their sudden enunciation. Their increased volume. And instead of recognizing that as an extension of their grace, the VERY THING I NEEDED, I saw it as a manifestation of my shame. That’s on me.
When I revealed my identity to Pittsburgh in 2009, I was forced to come face-to-face with my disability for the first time in a long time. How could I become a person revealing her face and name while attempting to hide her deafness? What if a kind reader spoke to me and I didn’t hear and they believed me to be rude? So I revealed that shameful part of myself out of fear. Fear of offending. Fear of being misunderstood. Me and shame and fear. The three Musketeers.
But even then. Even then. Every time a family member had to intervene. “No, they didn’t say that. They said this.” “Oh, she didn’t hear you.” I’d play it cool, but that shame and embarrassment always lurked low, reminding me they were there. Waiting.
So, on the surface, I was projecting the persona of being a strong woman overcoming her disability kicking down doors hear me roar boss ass bitch mic drop boom. Under all that? Just embarrassment and embers of shame that refused to fully burn out. My still surface hid the most chaotic of undercurrents.
And then came Covid. Ah, you brutal bitch, Covid.
Covid changed my life in a lot of ways and forever and ever. It took some things from me. But it gave me some things too.
I won’t lie. I avoid crying and I’m good at avoiding it. It’s one of my more useful superpowers. I don’t watch sad movies or shows and I don’t read sad books and I avoid discussions that involve emotions and when I feel emotions, I kick those bitches directly into the sun. But with Covid, my attempts at passing as hearing no longer worked. I was a stranger in a strange land. Me trying to understand a masked person was no less frustrating than trying to understand a person speaking a foreign language. I avoided any conversation. I no longer volunteered because I’d have to interact with masked people. I’d find myself sitting in my car with tears dampening my mask, frustrated that I had become even less of a functioning human than I already was. I remember one particularly frustrating incident that left me sitting at an airport gate crying in my seat. Because I hadn’t been able to understand the cashier at Cinnabon. And I wouldn’t just tell her the truth so she could find a way to help me. That’s on me.
Finally, about six months into the pandemic, I had to take my daughter to a new dentist to get a troublesome tooth looked at. At the end of her first visit, the dentist came out to the waiting area. Younger than me. In his thirties. Masked. And began to tell me—well, I’m guessing he was telling me about her treatment plan and next steps, but I couldn’t decipher a single word—and I did the unthinkable.
I held up a hand.
I don’t want to not hear this. I don’t have anyone to hear for me. It’s only me.
“Wait. I’m sorry. I don’t want you to keep talking only for me to then tell you that I didn’t understand a thing you said to me. I’m mostly deaf. I read lips.”
Full. Stop. No excuses.
I felt the familiar shame and embarrassment swirling—ready—but I had no choice. For my daughter, I needed to know what this man was saying to me. His eyes crinkled in what I assume was a smile and he said something—what? How the hell would I know? Have you even been paying attention? And then he walked away.
But he returned and handed me a notepad on which he had written, “Hi! I’m Dr. T_____.” And then he wrote out—with no shorthand—everything he had been about to verbalize to me.
I was as stunned as I was that day the pages died. It was the “Hi!” that got me. That got through.
Because inside of that “Hi!” was the first time I recognized the grace. Not the shame or the embarrassment. The grace. I didn’t cry about it until that evening, moved as I was by the gesture that—to him—was probably a nothingburger in his long day of somethingburgers (coming soon to Wahlburgers). That one incident—that one extension of kindness that finally stomped down the shame—was weirdly life-changing and if you somehow know this dentist please don’t tell him I wrote that because I’ll die of embarrassment because that bitch will always live inside me even after the shame dies. But that dentist, doing that one small thing—not just writing the note, which in and of itself was a huge deal for me, but taking the time to write Hi?
Man, that got me. That changed me. That was my Chidi-pondering-the-dot-over-the-I-in-Jeremy-Bearimy moment.
That “Hi!” made me realize that I had been so focused on my own shame that I never bothered to give people a chance to show me their grace. To show me how THEY would alter themselves for ME. To show me that they didn’t think I had anything to feel shameful about. I had denied others that chance my whole life. That’s on me.
So because of Covid, because of my daughter’s tooth, because of that dentist, I went from attempting to pass as hearing to not even letting a person get half a syllable out behind their mask before I hold up that hand.
Bup-bup-bup. Wait. Just.
And then I do wait. I wait to see what they will do. Some pull their masks down. Some write me notes. Some take me outside and chat mask-free in the open air. Some talk louder and … LOL. It’s not the volume; it’s the comprehension. Turning up a Spanish-language TV show doesn’t make you automatically understand Spanish does it? That’s what happens when you turn up your volume behind your mask. Indecipherable, but louder. Nice try.
It has been a year and a half since I found the grace of others and let go of the shame in myself. It has been a year and a half of real freedom. It has been a year and a half of giving people a chance to show me they understand that once I verbalize my disability, the onus falls on them to make our interactions work. I can’t make myself hear, but they can make themselves understood. It has been a year and a half of me more openly sharing my disability and my ongoing journey with new hearing aids that have opened previously shut doors.
I don’t know the next thing that I will lose and to be frank, there isn’t much left to lose. There are only a few tones I can still hear unaided. A few clings and clangs. Without my hearing aids, I’m in silence now. Sometimes that silence comforts; sometimes it scares. But I’m comforted knowing the sounds are still there. With my hearing aids, I’m doing pretty well. But I’m comforted knowing that should I need it, there is grace out there to make my going easier, but the only way I’ll find it is if I let go of the shame.
And that’s why I write this. For you. Whatever you’re hiding. Whatever card you’ve been dealt that you’ve written SHAME across that you keep tucked in a deep pocket. Whatever hurdle, disability, mental health struggle, disease. Whatever chaos is running under your still waters, there is freedom in letting the shame of it go and there is grace to be found in others when we do.
It’s on me and you to forever give them a chance to show it to us.
If they do, onward we go. If they don’t?
Well, that’s on them.