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How I Reclaimed My Life by Performing Onstage As Someone Who's Gene Positive for Huntington's Disease

I was standing backstage in a dimly lit holding area sectioned off from the audience by a heavy velvet curtain. I took a deep breath, trying to stop the trembling that was making its way through my body. Dan, the event organizer, caught my eye mid-breath and gave me an encouraging smile.

I could see the woman performing before me standing in front of a tall microphone illuminated by the bright stage lights. “This is really happening,” I thought to myself. I was about to do something completely out of character.

The countdown clock showed less than two minutes before I would climb up the stairs, walk across the stage and attempt to make a room full of strangers laugh.

I was so nervous I barely told anyone where I was going that night. I was sure my family and friends would think it was stupid. I didn’t want to risk hearing any negative comments that would deplete the little bit of confidence I had built back up.

Years before, I was diagnosed as gene positive for Huntington’s disease (HD), a degenerative neurological condition that causes cognitive impairment, uncontrolled movements and emotional issues. I used to ask myself, “What is the point of living if I am just going to suffer from this horrible disease?” 

I felt defective and had a hard time coping, knowing I would become a burden to my loved ones — especially my husband. Most nights when we were lying in bed, I would ask him, “Are you sure you still love me?” — tears rolling down my cheeks and onto the pillow.

“Of course I still love you,” he would reassure me, pulling me into his arms.

Along with my diagnosis came the knowledge that any child we conceived had a 50 percent chance of inheriting the disease from me. Despite the horrible news, we still wanted to have a family. Unfortunately, we suffered through years of undiagnosed infertility. I felt like my body had failed us again. I gained 20 pounds from a combination of fertility treatments and extreme stress. I lost my self-confidence and felt ugly and useless. I wanted to shrivel up in a corner where no one would look at me.

I was trying to gain back control of my life by going onstage that night. I had arrived at the bar two hours before the start of the show, along with 17 other readers. Dan welcomed everyone and briefed us on what to expect. We didn’t know when we would be performing, just that we would get a five minute warning when our name was called. We were each given a special pin to wear so we could pick fellow readers from out in the crowd to offer up words of encouragement and exchange high fives. We took a group photo and Dan gave an encouraging pep talk. I felt pumped and incredibly anxious.

At 7 p.m., a lineup of 200 people slowly filtered in through the front doors, along with my husband who was there to support me. We spent the evening sitting in rickety folding chairs, listening to the other readers and laughing at each story full of teenage angst. As we waited for the next person to walk onstage, I leaned over toward my husband and said, “Everyone is so amazing. Do you think my stuff is good enough?”

“Yes it’s good. Don’t worry about it,” he said, while squeezing my leg.

Even though we were in a bar, I didn’t have a drink because I wanted to be fully present, nerves and all. When my name was finally called as the fifteenth reader of the evening, my heart started racing. I looked at my husband and gave him a nervous smile.

“You’ll do great,” he said, and gave me a kiss before I got up and weaved my way through the audience to the backstage area.

A lot went through my head as I waited in the dim light for my turn.

What if no one laughs at my stuff?

“No, don’t think about that. You can do this!” I told myself.

I’ve never liked being the center of attention but when I had first heard “Grown Ups Read Things They Wrote as Kids” on the radio, I immediately knew I wanted to be on the show. I had never spoken in front of a large group of people but I was determined to prove I could do anything I set my mind to. The reader before me exited to applause and I gave her a high five as she passed by.

“Our next reader is Erin,” Dan announced to the crowd.

I climbed three steps and walked to the center of the stage. As Dan adjusted the microphone to my height, I looked for my husband in the audience. The stage lights were so bright, I couldn’t see anything past the first row of people, so I just smiled in his direction.

“Here we go!” I thought to myself.

Then, I held up my notes and tensed my arms as I tried to steady the piece of paper between my two shaking hands. With a firm voice, I read my opening line and then paused. A huge wave of laughter raced across the room and washed over me. The empty air around me was suddenly filled with the physical presence of people’s emotions. My arms relaxed ever so slightly with relief at getting my first laugh.

I moved on to deliver my second line and was engulfed by more laughter. I shifted my weight from one foot to the other and looked out toward the audience. All I could see was black. Even though I was reading my notes from a page, it felt as if I was blind. My sense of hearing was heightened. With each line I delivered, I was filled with the audiences joy and I started to laugh as well, especially when I knew a punchline was coming. I was completely tuned in to the audience and engaged in receiving their happiness. As I stood there waiting for the room to quiet down before delivering my next line, I thought to myself, “I don’t want this to end.”

I was onstage for a nerve-racking, joyful, laughter-filled five minutes. I had never experienced anything like it and immediately understood why performers would go back to doing it night after night.

When I was finished reading, Dan walked over to the microphone to thank me and announce the next reader. I paused for a split second to appreciate the final moments of laughter and applause from the audience before heading offstage. Those were the most exhilarating five minutes of my life and a personal turning point.

My gene positive diagnosis and struggles with infertility had left me consumed by depression and fear. I remember sitting on the edge of my bed one morning, staring at a dirty sock that had been on my floor for days. I really wanted to pick it up but I only had enough mental strength to get dressed. Small tasks were overwhelming. Even when I was struggling to get through the day, I had a vision of the person I wanted to become.

“I don’t want HD and infertility to ruin me,” I would think to myself.

I wanted to become a strong and confident woman who was not afraid of life — someone who could take on challenges and wasn’t afraid of speaking to people or being seen.

That night onstage, I took a huge step towards embodying that image. I was courageous and strong. I did something no one, including myself, expected of me and I felt ecstatic about my accomplishment. My performance made the podcast and every once in a while, I still listen to it to remind me of how far I have come.

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