“I began singing in choirs at the age of 16, my sophomore year in high school. If I’m honest, it took me finally getting up the courage to do something that wasn’t “cool” in my teenage mind, and I’m so glad I did. Joining the concert choir was the start of thirty years of finding connection and belonging in communities across the country and even abroad. I’ve been a part of chamber groups, musical theatre, a college concert choir, and in adulthood I’ve found community in Indiana, Wisconsin, Washington, and even a small village in Northern Italy. Wherever I’ve lived, I’ve found a choir to sing in and a community of people with whom to connect.

I’ve found that singing in a group and blending one’s voice with others brings a connection you simply cannot replicate anywhere else. So when I faced losing half of my hearing after my acoustic neuroma was diagnosed in summer of 2023, it raised an important question: would I be able to experience that connection and blending in the same way? I don’t remember looking to answer that question so much as fearing that, at least to some degree, I would never experience choir music the same way again.

The worries and concerns that come to mind for those newly diagnosed with an Acoustic Neuroma are likely as varied as the outcomes and processes our AN journeys follow. When I learned that I would most likely lose my hearing, it hit me the hardest because of a fear of losing some or all of a vitally important part of my life.

Anticipatory grief is what our minds and bodies do to prepare for an impending loss. While some friends and loved ones urged me not to focus on what I might lose before anything was certain, avoiding it never felt quite right to me. I knew life would be different, and waiting until after the surgery felt neither realistic nor practical to me. I knew I would be going through something big, and I knew that my life would be different to some degree at least. While the ways each of us experiences grief (anticipatory or otherwise) vary widely, we will all deal with it at some point in our lives.

Though how much of my experience with music would change was unknown, I felt the need prepare myself and to soak up as much live music as I could. Conveniently, at the time of my diagnosis I was living in Appleton, Wisconsin, home to the Mile of Music Festival. Each August, 200 artists come to the Fox Valley in northeastern Wisconsin to perform 700 sets in four days. The acts vary so widely that you might experience a quiet solo folks artist in a coffee shop or a thrash metal band in a club. So the month before my surgery I made the most of it and even made friends with a couple of artists whose music meant so much to me. Rather than avoid thinking about the looming loss, I did my best to bring it along with me.

Being relatively new to Appleton, choral music wasn’t as available to me, so I would take walks and listen to some of the beautiful pieces I’d sung or heard over the years. Sometimes it was joyous, other times it was heart wrenching, but it was always beautiful. I recall making it back to my house after a walk, sitting on the steps, and letting myself fall apart. Though I couldn’t be certain what would happen, I could allow myself to feel and sit with the fear that was so very real.

During an intimate performance at Mile of Music, the audience was invited to sing along and I was once again surrounded by voices blending. It was a stunning moment, and I let myself feel the overwhelming beauty and my sadness right next to it. As author Emily Nagoski says, emotions are like tunnels: the only way to the other side is to go through them. I walked away from that performance raw with emotion, but also feeling a deep sense of appreciation.. Gratitude isn’t a monolith. Pain, fear, and sadness can stand right by its side.

Having an Acoustic Neuroma invariably means facing potential loss or changes. My advice would be to balance hope and optimism with acknowledgment and self-compassion. Yes, we should hope for the best and keep our minds in a positive space. However, it is also important to recognize that healthy coping and living means being able to integrate all parts of ourselves, our experiences, and our emotions. Fear is not weakness, and as Franklin D. Roosevelt put it: courage is not the absence of fear, but concluding that something else is more important. In this case, what may be more important than “good vibes” is compassionate acknowledgment that this is a scary, uncertain time.

So take the space you need. Journal about it. Talk to trusted friends, loved ones, a counselor or spiritual leader. Cry when you need to cry. Courage will still be there when you’re done. And know that, no matter what happens, you will find your way to your new normal – that’s our human nature.”

– DJ Hilley