I didn’t start out as a mom with hearing loss. But ever since I can remember, I have always been fascinated by and drawn to anyone that used sign language. It started when I was in first grade and my teacher, Mrs. Shahan, would sign to us all day long at school. She would talk while she signed, but sometimes it was like complete immersion. I loved it and my parents were completely supportive of my interest in this other language. When we would go to church, I would go out of my way to find a seat right behind the interpreter because I couldn’t get enough of it.
The interest in sign language never faded as I grew older.
When I went to college I had finally decided what I wanted to be when I grew up: an interpreter! I took all the appropriate classes and began to research the next steps to taking my certification test. All the while that I was taking ASL classes, I was working at a Montessori school.
Once a month I was going to doctors because of severe ear pain and sinus issues. It seemed like every other month I was given steroid shots and a different type of antibiotics to try and get rid of my double ear infections and sinus infections. At one point, I was told to go to my dentist because the antibiotics don’t seem to be treating this and it may in fact not be infections at all but rather TMJ.
To be honest, I was beginning to feel a little frustrated by how often I was getting sick. Working at a school can definitely take a toll on one’s immune system, but this seemed to be a bit ridiculous.
Fast forward a few years to 2012. I had just stepped out of the shower and had my hair flipped over my head to apply my curling cream product and to scrunch it with a towel and that’s when I caught a whiff of mildew. I didn’t think too much of it at first because I was a mom to an 18-month-old boy. To get wet clothes from the washer to the dryer before mildew sets in is a miracle. I smelled the towel, but oddly enough I didn’t smell the odor anymore.
So the hairstyling continues, and then it’s time to do the best part of post shower rituals: the ear cleaning. There is nothing like a good deep brain scratch via the ear canal. Cleaning out my ears always seemed to help to alleviate my ear aches. So I insert the Q-tip to my right ear to scratch and dry it out and grab a new one for my left.
That’s when it happened.
When I removed the Q-tip, the air around me was filled with a mildew smell again. I nearly barfed when I realized the smell was coming from my ear! I immediately called an ENT specialist and asked to come in right away.
She irrigated my ear and removed so much wax build up that a new wave of nausea hit me in her office. She told me to come back in a couple of months to make sure everything was fine. Two months later I was back in her office. I felt like my hearing wasn’t what it used to be. My ears still always hurt, especially after first waking up, and my left ear was still insanely itchy.
So Dr. Huang went in again to see what might be going on.
My son was happily playing with his cars while this doctor dug into my ear, when all of a sudden she stopped, rolled her stool back toward the door, and called for her nurse.
“I need you to cancel all of my appointments for the rest of the day right now! Call the imaging center and tell them to admit Ashley in immediately. I will be going with her to the center.”
My heart sunk. I wasn’t sure what to expect, but I figured if a doctor immediately cancels all her appointments and is going to give me a personal escort for a CT scan, it probably wasn’t a good thing. Dr. Huang told me to find immediate childcare for my son because I would be needing a CT scan and a possible MRI.
She told me, “I don’t know if what I am seeing is your brain, your skull, or something else, but I’m not touching the inside of your ear until I know what it is we’re looking at.”
After meeting my husband to pass off my son, I headed inside the imaging center to wait. I had a CT scan with and without contrast and I had an MRI. It was determined that I had a cholesteatoma on the left side of my head and what seemed to be the beginnings of a glomus jugulare tumor on the right side. I needed to have surgery as soon as possible in order to save the rest of my inner ear from being destroyed by the cholesteatoma and to try and save my ear drums.
The day came for my surgery.
I had reconstructive surgery in my left ear. The doctor removed the cholesteatoma, removed my diseased inner ear bone, inserted a prosthetic bone in its place, and rebuilt my eardrum by using a skin graft from inside my cheek.
Recovery was no joke. Because so much work had been done, the crystals in my head had been moved so much that the slightest thing could set off vertigo. So for a solid week I did nothing but sleep while my mom and husband cared for my son.
Today, the only visible signs that anything ever took place in my ear is the gnarly scar behind my left ear. I have had continued declining hearing loss because of the permanent damage left behind from the cholesteatoma that I now have to use hearing aids.
I became a mom with hearing loss.
The COVID-19 pandemic showed me just how much I rely on reading lips. Between plastic
barriers, masks, and muffled voices, I miss more spoken than I ever actually pick up. At first, it triggered me and took me back to the beginning of my hearing loss journey. Trying desperately to understand what people are saying while piecing it together and hoping it makes sense or laughing and smiling because I wasn’t sure what I missed. There’s a sense of frustration and embarrassment of asking a person to repeat themselves numerous times.
So here’s what I’ve taken away from my hearing loss journey:
I’ve learned to have patience with myself as I once again try to remember all that I learned in my ASL classes. There are many accounts that I follow on instagram, like @itssarahjaynee, @deafjourney, and @deaffamilymatters. I’ve learned that there’s a beauty in silence.
You can also read this moving post from a fellow mom with hearing loss at the Vermont Mom page.
There’s even some awesome benefits to losing my hearing!
My kids get too loud in the car? Oops, did I just take my hearing aids out? Insta-mute! I’ve even learned to find beauty in sounds that, before having hearing aids, I didn’t know even existed. The first time I heard a humming bird, I cried.
I’m grateful for this journey of being a mom with hearing loss.
It’s been hard at times, but I’m so grateful for all that I’ve learned. I’m grateful to my friends in the deaf community that have been patient with me as I learn.
And I’m grateful to Mrs. Shahan for giving me a love for a language and a community that I didn’t know I would need in my life one day.