The Voice That Soars

“First, you’ll lose your voice. Then your ability to breathe,” said the neurosurgeon in the same matter-of-fact tone that a waiter says, “First your salad will arrive. Then you’ll get your steak.” This is how I learned that I had a massive brainstem tumor and three months to live.

At 45 years old, I was married, the mother of two, a champion ultrarunner. I was also medically “boring.” No health or genetic history of any kind. Previous conditions: none. Previous surgeries: wisdom teeth removal. The news was a shock. I stared at the screen with the black-and-white images of my skull and tried to make sense of this white growth, shaped like storm clouds, pushing into the dark spaces around my tongue and vocal cords.

“How does your voice feel now?” the doctor asked. “Are you able to use it whenever you want?”

“Yes,” I said, but the question hung in the air for a moment.

Usually, when the topic of using your voice is mentioned, it’s about permission. I feel lucky to be born in a time and place where I am free to speak out. But that doesn’t mean I have always known how to find my voice and how to use it to author my life.

The idea that I might die young and without a voice made me wonder, When was the last time I genuinely used my voice? All I seemed to say were words that I thought a good mother or a good wife or a good colleague should say.

Take the other morning as an example. I woke up with a bad headache and I felt raw and cranky. In the kitchen, my husband, Kurt, heated up the cast-iron skillet and cracked eggs into the hot pan. Instead of saying, “I feel terrible,” I said, “Should you really be having two fried eggs for breakfast again?”

Later, a neighbor asked how I was feeling, and I said, “I’m fine,” when really I felt exhausted and overwhelmed. At work, I was sprinting to meet an unrealistic timeline. Colleagues asked, “Are you going to make the deadline on that project?” I wanted to ask them, “Can you help me with this one piece?” But I didn’t want them to think I couldn’t handle it on my own, so I said, “It’s going great.” When I finally arrived home and felt the build-up of not using my true voice all day, I unleashed on my children. They were quietly playing a video game. I didn’t say hello or ask, “What are you playing?” I used my voice to scream, “Get off that f*&?#@!! screen!” They left the room, sobbing.

I was raised to be nice, to avoid conflict, to keep the peace. For people outside the house, I am calm and kind, generous and positive. I use my voice to say what I think others want to hear. Then later, at home, the volcano inside me erupts as resentment or rage. My husband, my children, and I suffer the consequences of my reluctance to use my true voice all day long. There is nothing peace-making about avoiding saying things that might be uncomfortable. There are only the consequences: strained relationships and a lost, unused voice, maybe forever.

The voice I want to find in me and in you is the one that sings, the one that moans, the one that trembles and cries and howls and roars—a voice that is primal and real…one that will make me soar and others stop in their tracks and listen. It is not the voice that hedges or hesitates, judges or gets jealous. The voice I want to find is the one that has the passion of that angry voice when pushed to the edge, but without the helplessness. Can you imagine if that voice was tamed, or if we exercised its muscles more often? It would come out as song.

Now, using my voice is a matter of life or death. What if this tumor moved into the place near my vocal cords because the area seemed available or abandoned?

Time is running out. What if using my voice might be as effective as flipping on a light switch and letting the tumor know, “Sorry. No vacancy: This space is occupied and home to a powerful, wild voice that cannot be silenced.” I am determined: From now on, I will say what I feel without fear, and knock this hobo tumor right out of my brainstem railcar.

The next thing that happened was that some friends invited me out to a movie. I didn’t want to go, but I thought it would hurt their feelings if I said no. So I went. Well, the movie that was labeled a comedy was grim; the whole thing was filmed in dark green and brown. People died senseless, graphic deaths. No one smiled. I sat there in pain, but to get up and walk out of the theater felt strangely not obvious. It felt like I had to stay, because that is just what one does. But with the courage of my new experiment, I leaned over to my friend and said, “I’m going to leave now.” Then, when people on screen started kicking dogs to death and blinding themselves with steak knives, I crawled over my friends and left the theater.

I went for a walk and watched the sunset over the mountains. I had a strange sense of exhilaration, so different than the dread I felt in the dark theater. I had walked out. I would never have done that before—it would have felt weak or just rude. But the idea that I could, and that I did, felt like freedom. And you know what? Another woman sitting behind me walked out right after I did. I wonder how many of us were sitting in that theater, waiting for it to get better and not doing anything.

It shouldn’t have to take a diagnosis of a massive tumor to recognize that there is nothing benign about not expressing ourselves. The question I am living with now isn’t, “When will I lose my voice?” but rather, “When did I let it go?” When did I ignore it so much that it walked away, opening the door for something ominous to move in?

Maybe someday soon I will use my voice to end violence and inequality or save lives in a big way. But beginning small feels like a form of deep listening and discovery. Now I check in with myself moment to moment. How do I feel right now? What do I really want to say or create with this, my only voice? Then I make a choice. In my life, I choose courage over perfection, joy over fear.

Now I close my eyes and imagine that every time I open my mouth to express myself fully, the force of my truth rips the tumor storm clouds off my vocal cords, and blows them out of my mouth. I keep my eyes closed and start to sing, feeling these tiny tumor clouds rolling like tumbleweed down a dusty dirt road, far away.

Previously posted: https://www.thewomansnetwork.com/tumor-cant-take-my-voice/

About the Author | Susie Rinehart

Susie Rinehart is an award-winning writer, champion ultrarunner, and mother. She writes about how she had to abandon the safe harbor of perfectionism to risk living her best life. Susie’s forthcoming memoir, Brave over Perfect, is a powerful meditation on how to face adversity and the unknown. She lives in Boulder with her family.

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