MILWAUKEE — Sounds are all around us. From bagging groceries to friends laughing to birds chirping in trees. But how much do we really notice these things? For many, the sounds probably just go in one ear and out the other. However, one 17-year-old from St. Francis is paying close attention to the noises around her.
“I’ve been wanting to listen to this for a long time," Ella Coonen said before crossing a big experience off her list.
She wanted to hear the bells of The Basilica of St. Josaphat in Milwaukee. Not from far away but up close. So she climbed up to the top of the bell tower and heard the sound she was waiting for.
"It’s like the sound is a circle," Coonen said.
The way she experiences sound and can describe it is with visual cues. That's why she characterized the bells as the sound of a circle.
"I've never had sound experiences before, so I have to experience everything through feeling and visual experiences. So certain sounds that are more, I guess you could call them sharp, are more like triangles. Like certain sounds that are more bland and kind of boring are squares. No offense to the square lovers. And then sounds that kind of enclose you are more circular," Coonen said.
Watch the story to see Ella Coonen's first experience with church bells...
For the majority of her life, Coonen has been hard of hearing. It was so bad, she never heard the sound of the wind. So when she got hearing aids in March of 2025, she needed to find a way to describe what she was hearing. Overall, the bells felt joyous. But it was a bittersweet moment.
“Who knew that something could feel so much like it’s breaking a part of me and putting me back together all at once," she said.
This is the first and likely last time she will ever hear something like church bells.
“A once-in-a-lifetime experience for more reasons than one," Coonen said.
In February, doctors gave her bad news. They said she had a genetic disorder and was going deaf fast. That explained why she grew up not hearing well.
"Knowing that you're losing something as you lose it, I imagine, is worse than suddenly losing it and never really knowing. But at least now I get to say goodbye," she said.
So even though her hearing aids allow her to listen to the sounds she couldn't hear before, they are only a temporary fix. Her hearing will get worse every day. So to say goodbye to her sense of hearing, she created a bucket list of sounds - things she wanted to hear before going deaf.
There are 16 things on that list, including church bells, an orchestra, a baby laughing, a choir, opera singers, and a race car. Since she was at the Basilica, she got a bonus sound too, the organ.
“I feel like I was just chewed up by the sound and spit up, and I’m trying to put all my body parts back together so I can like articulate," Coonen said about the sound of the organ.
It has been a difficult journey since learning she would completely lose her hearing. Doctors said it could be a few weeks or a couple of years.
“How to cope with loss before it happens," she said.
On top of hearing loss, doctors gave her another diagnosis.
“I have hypermobile Ehlers-Danlos syndrome, so another genetic disorder. I got a two-for-one deal," Coonen said.
It means she has joint instability and chronic pain. Walking up or down steps can be difficult. Coonen easily dislocates bones and frequently has gastrointestinal issues. She will be in physical therapy for her entire life.
“I’ve had a lot of periods of like going through the full stages of grief.”
But the sound bucket list keeps her spirits up.
“I’m going to be okay," she said.
Because the memories of these sounds will stay with her forever.
“I plan to remember things through the experiences, but more so through how they show me who I am," she said.
As she goes through this process, she is also recording it all. A documentary crew has been following her from experience to experience capturing each moment. The documentary will be called 'The Sound of a Bucket List'. It will likely be completed in the Spring of 2026 in time for the upcoming film festival circuit.
The last sound on her list is hearing the waves on the ocean. And when that’s done, she just wants to listen to everyday sounds until she can’t anymore.
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