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On Shame, Hearing Loss, And Finally Hearing My Son's Voice

On Shame, Hearing Loss, And Finally Hearing My Son's Voice

By Jennifer Pastiloff
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I was teaching a yoga class in my yard when my five-year-old son Charlie came over to ask me a question. His voice startled me. I must have looked shocked to anyone witnessing the exchange, as if I had never heard the sound of my child's voice. My eyes welled up, a rare occurrence because of my anti-depressants. I asked him to repeat himself, not because I couldn't hear him but precisely the opposite. I don't think I had ever really heard his voice before. The slight scratchiness, the pitch, the way he pronounced the words Halloween and Skeleton as if both words only had two syllables.

Hoween. Skelton.

I don't remember exactly what he said, but there was my son's voice. I wanted to stop time and memorize it. His exact words don't matter because the truth of hearing aids…and the truth of shame…is that we obsess over the details, but what really matters is what we miss because of them.

I have missed five years of my son's voice, what it feels like to hear him speak without sounding like he's underwater. I want him to talk to me constantly now so I can make up for all the lost sounds. Tell me about Kindergarten and what kind of spiders are poisonous and do you like persimmons. I let him go; I couldn't keep him captive simply to listen to the music of his cute little voice. I didn't sleep that night because of my excitement. His voice played in my head over and over and I was dumbfounded how technology can be so amazing and so weird. One moment I can't hear, and the next I can with the help of these little robotic things in my ears. I can hear my own voice. It's like I am newly born and experiencing the world for the first time (except I am in my forties and I have gastritis and I need bifocals).

Resound, a global hearing aid company, gifted me a pair of hearing aids. (In laymen's terms, they are paying me to share and promote them…which I will gladly do because they are amazing.) I can hear the enormity of the world because of these hearing aids. I also can hear my dishwasher running. There's a comfort in this. It catches me off-guard, how moving all of these new old sounds are.

I try to not let myself go down the rabbit hole of feeling bad for how much I've missed, but rather revel in what I can hear now. But in telling this story, I must look at one of the biggest obstacles I've faced because of my hearing loss: shame.

Hearing aids are ridiculously expensive. My first pair were donated after I wrote a blog post declaring that I was letting go of the shame surrounding my hearing loss and would wear hearing aids if only I could afford them.

The thing is, shame cannot be rationalized. It will evade all logic, throwing up its arms like the emoji that means heck if I know. I know women who have been assaulted and for years carried shame as if it was their fault. It was not. I know people who have said I hate you to a parent and then that parent dropped dead, so the person…me…thought it was their fault. It was not. I know people who wanted children and were not able to have them and carried shame as if they were not valuable members of society. They are. But shame will try to convince us of the lie. It is insidious. Shame will eat away at every area of your life as you scroll unaware through social media looking for reasons to keep carrying shame, looking for reminders of not-enoughness.

There is no reason to be ashamed. And yet. And still. Try telling that to shame. So yes, for most of my life…well into my thirties…I was ashamed and afraid of my deafness. So I hid it.

I need you to understand how tragic it is that hearing aids are so expensive. I dearly hope we can someday live in a world that provides them for everyone in need. Am I more deserving than someone else to receive the gift of this pair? Certainly not, but I do have a platform and can help spread the word about how these hearing aids gave me back clarity and detail instead of socks in mouths. I can preach the gospel of how you can suddenly understand a whisper. How going out to dinner does not have to cause a panic attack because you know you can't follow along. How I can now hear my son's perfect voice. I hate the words platform and following, but if I can do some semblance of good; well, my job is done.

I want to make hearing aids more accessible.

In fact, there's currently an initiative to make them more affordable with the Over the Counter (OTC) Hearing Aid Act. The FDA has been working on defining this for several years and the result will happen soon. Per The Washington Post: although about 38 million adults in the United States report hearing loss, few have tried the devices. Among adults over 70 with hearing loss, only one in three has ever worn them, according to data collected in the National Health Interview Survey. I would argue that a large percentage of those folks haven't tried hearing aids because of cost, or shame, or both. The shame around money and lack of it is another essay but they are deeply intertwined.

More than anything else, I want to help people let go of shame.

I want to take away any stigma related to things we are afraid to talk about out loud. The stigma of hearing loss. Of mental health. Of not having money. Of ADHD. Of living in a tiny, one-bedroom because that's all you can afford. To whatever you might be carrying…yes, you. I'm here to tell you: it is possible to lose shame. It's a day by day practice, so don't think I'm selling you a Shameloss pill. I wish I was!

Daily practices remind us that we don't need to carry shame. We get to put it down.

My son's name is Charlie Mel. Mel was my dad's name, may that mensch rest in peace. I didn't think I would have kids so it's still surreal to write 'my son,” to hear 'Mommy.” But wow, imagine if we stayed open to what we don't know for sure? How magical life would be. How many of us have decided that something is just the way it is when we have no idea what the future may bring?

*raises both hands*

Charlie had a hearing test at school and when the results came in the mail my heart dropped into my stomach as I opened the envelope.

I'm grateful that they test our kids in school. Charlie's hearing range was 'within normal limits,” but if it hadn't been, I would know how to help so he wouldn't have to struggle like I did. Had I gotten hearing aids when I was younger my life would look completely different.

Those test results triggered a visceral memory in my body. I've blocked out so much of my younger years, specifically in regard to my hearing loss, but I always felt like I was on the outside. Like I was always just out of earshot. Like I had to rely on expressions and body language because words collapsed into themselves before I could reach them, or they could reach me. My whole life, a never-ending 'huh?” And 'what?” And 'excuse me?” And 'sorry?” And 'pardon?” And 'huh huh huh?” And letting go of comprehension because it was too exhausting. I always felt tired and then shamed myself for always feeling tired.

So much shame.

So what did I do to let go of that shame, specifically in regards to deafness? Daily practices became the key because this isn't a quick fix:

  • I sleep without my phone next to my head so email or work or news isn't the first and last thing I do every day.
  • I begin with a prayer I made up that starts with 'May I remember–” and list all the things that remind me of who I want to be in the world.
  • I keep a journal called OFF THE HOOK BOOK where I let myself let go of whatever needs letting go. I write in it specifically at night, a ritual of dumping anything before bed that's weighing me down.
  • I share my shame stories, not every last personal detail, but I refuse to hide anymore, be it about my hearing loss, my mental health, my home, my fears, my history of anorexia, and the grief that I used to think had a long-passed expiration date.

I share myself without the filter of shame. I speak about it in my speaking gigs, on social media, with coaching clients, and in the yoga classes and retreats I lead, making it abundantly clear that no, I have not figured it all out. I'm in the trenches of figuring it out, and I invite people to come along and, hopefully, put down their shame along the way.

I'm proud that I've let go of the shame regarding my own deafness. I created the ShameLoss movement last year when I felt overwhelmed with how it seemingly infiltrated the lives of so many people I know, including my own. As someone who nearly died from an eating disorder, it's empowering to declare shame loss instead of weight loss.

If you are pondering why this wacky lady would be ashamed of her hearing loss, I invite you to look at your own life: when have you felt like you did not measure up? Like you had failed, or were stupid or behind? Have you ever felt that? It's terrifying, to always be thinking: If it's this bad now what will it be later? Will I lose all sound completely?

I thought that if I denied those feelings, they would go away.

They won't.

I thought something was wrong with me.

There isn't.

I thought I was broken.

I'm not.

Neither are you.

Even if those test results showed that my son had hearing loss, he wouldn't be broken. That doesn't mean I'm not relieved he won't have to go through what I did. Both those things can be true at once.

My advice is this: Pause. Let go of what you think you know. Especially about someone else. They could be walking through the world with an invisible disability or trauma or grief and you might simply write them off as rude or entitled or arrogant. While that may be the case sometimes, we owe it to ourselves to cultivate compassion…towards ourselves and towards others.

Repeat after me: I am not broken.

Repeat as many times a day until it is tattooed on your heart.

You are not broken. You are human.

I hope you indulge in something you might not do or say normally because of shame. Go on a date or get in a bathing suit in front of people or try cooking a chicken even though you never have (again: me.) Get your hearing checked, even if you've been pretending that it's been fine, or you're afraid of what the audiologist may say. Ask someone to go with you. Ask for help. Let's say that twice since so many people struggle with it: ask for help, and…this is the kicker…allow yourself to receive it. Fall down in yoga class. Try writing something even though you think you can't write. Post a selfie. Admit you're happy. Admit you aren't. Take a mental health day from work. Tell someone how you really feel. Sing out loud, even off-key. Especially off-key. Play with Legos even if you are forty years older than the others playing. Keep letting yourself off the hook for not being perfect despite what shame tells you. Tell your story. Stop dyeing your hair. Or color your hair. Or shave your head. Raise your hand in a meeting. Learn TikTok, or get the hell off social media. Take yourself out to dinner. Let the world know what you're good at it. Be vulnerable in front of someone else. There's an endless list of things that shame keeps us from and yet, if you keep indulging in those things, the shame will get smaller and maybe one day you'll stop hearing it altogether.

One day you might wake up and hear the most beautiful sound you've ever heard.

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