On Saturday evening, I received a text from a friend asking if I wanted to travel to Sharpsville, PA with him, his mom, and a girlfriend to watch a mutual friend of ours perform in the play, Noises Off, at the Pierce Opera House the following afternoon. I told him that I was planning on taking a vow of silence for Project ALS and their “Don’t Talk A-Thon” campaign, and wasn’t sure if my silence would put a damper on their plans. With the words, “We support each other no matter what the other is doing,” I hopped on board. And boy, what a day it was.
To start, I’d be completely lying if I said that my day of silence was anything but challenging. That, and mentally exhausting. At first, I felt very peaceful knowing that I was supporting my dad and those that can no longer use their voice due to motor neuron deterioration. Being a rather expressive person, and having experience traveling to various countries where English wasn’t a primary option, I was anxious to see how I’d manage myself in public. At first, I found it easy to communicate with my friends through extreme gestures and facial expressions in the car. I brought along a pen and paper to use when I wanted to scribble something down, and although I felt a little self-conscious, I was thankful to be around supportive friends who encouraged my efforts.
And then we got to the Opera House, a place where people didn’t know me, my dad, or my story. Slight panic set in as I tried to purchase my ticket at the box office, and the gentleman standing before me asked, “Adult or Student?” I looked at my friends. HELP ME my eyes pleaded. They didn’t catch my drift, and understandably so. They’re used to hearing me speak.
“Adult,” I whispered, disappointed I had to use my voice for the first time. “Keep quiet,” said my mom’s friend. “I’ll talk for you.” Easy enough, I thought. I was relieved to know that I wouldn’t have to break my vow again.
It didn’t turn out to be that easy. It’s amazing how many times a day we talk to random people without even noticing. Standing in line for the bathroom during intermission, a man approached me to ask how I was enjoying the performance. I was thankful that he phrased his question in a way that I could just smile, nod, and silently laugh along with his comments. I later found out that he was the director.
After the bathroom line incident, I tried to avoid eye contact with people for the rest of the play. When I went to purchase a bottle of water at the makeshift concession stand, I simply pointed to what I wanted, nodded, smiled, and gave my money to the employee. When the performance ended, and our friend came out to say hello, I distanced myself slightly, letting everyone else give him praise for a job well done. Smiling along, I started to feel a swell of anxiousness growing inside me.
On the way home, we decided to stop at an Italian restaurant right down the street from the Opera House and grab dinner. While we were waiting to be seated, a man approached us. He said he recognized us from the play, and wanted to introduce himself. Apparently he had some connection to the production. As he made his way around the table, I prayed he wouldn’t notice me. But he did.
“Hi, what’s your name?” he said as he extended his hand towards me.
I reached forward to meet his hand. Open mouth, not sure what to do, I remained silent.
“GABBY. Her name’s Gabby,” my friend almost shouted. I was grateful that our host came and got us after I let his hand go.
When we got to our table, I grabbed my pad and pen to write down my order. Last minute, of course, I changed my mind, and re-wrote the new order on another page for my friend to use. When our waiter came, he looked at me first to speak.
So my friend started talking. “She’ll have the gluten free pasta with pink sauce, and . . .”
NO, I expressed, waving my hands wildly. She was reading from the wrong page. I flipped the page for her, and she continued, apologizing. After everyone finished ordering, I couldn’t help but wonder what our waiter thought of me. Being a retired waitress myself, I know what it’s like to just go with the flow no matter what happens at the table. But for some reason, this whole scene made me very self-conscious.
And then I realized what I felt – loss of autonomy. I felt the natural frustration that comes with the inability to do things for yourself. I was relying on other people to help me, talk for me, order for me, to say what I was thinking. During dinner, I felt myself growing more and more impatient. I just wanted to speak. To not have my friends guess what I was trying to say. I was sad that I couldn’t interject with my usual side comments during funny conversations, and writing took so long that I eventually gave up. I was surrounded by amazing and supportive friends who included me in all their conversation, but I still felt like I was losing my identity. Normal, lengthy statements were reduced to simple head nods, or drawn out gestures. To make things more complicated, the cast from the play we had just watched made reservations at our same restaurant, and many performers approached our table, even recognizing us as cast members from Beauty and the Beast. I sat there, smiling and nodding, trying not to draw attention to myself, and avoiding eye contact.
I felt terrible. I couldn’t interact with people in my usual, friendly way. I was quiet, and shy. I started to think how exhausting this must be for my dad. To be part of the conversation, but not really part of the conversing. To be in, but also be out.
My friends must’ve sensed my frustration because they told me how brave I was being.
I never occurred to me before that I was being brave. I thought I was just trying to support my dad. But maybe they were right. Maybe it was brave to go out in public knowing that I could talk, just making the decision not to.
During the car ride home, I thought about my dad and how he does what I did one day, everyday. He doesn’t have the choice between speaking and not speaking. It’s my dad who’s the brave one, not me. I did 16 hours, he does everyday. I was challenged one day, he is challenged everyday.
When I got home, I wrote down a note and took it into my parent’s bedroom for my dad to read.
“Wow. This is challenging,” it read.
He smiled, and wrote back, “I’ll say.” We laughed.
“Love,” I wrote, underlined.
“You,” he wrote.