I have always struggled with my voice.
Spinal muscular atrophy (SMA) causes muscle degeneration and weakness. In this case, it means that my voice is quiet. Soft. And not just my voice, either. People rarely notice when I sneeze, because it’s such a tiny, forgettable sound. My laugh is practically silent. My mom claims she can tell when I find something uproariously funny — I don’t cry with laughter or clutch my stomach, but I do make a sound, even if that sound is the gentlest of croaks.
I was in speech therapy as a child. I don’t remember any of it, but I do remember the effect my voice had on my childhood. A lot of people in primary school — classmates, teachers, even paraprofessionals — had a hard time understanding me. I would be asked over and over again to say that again, please, sorry, I just didn’t catch it, it’s so loud in here. Here would be the cafeteria, the halls, the library. Sometimes people were so embarrassed that instead of asking me to repeat myself, they would just nod blankly. Or, I’d get uh-huh or yeah, for sure or definitely, which they considered to be relatively safe responses.
My voice became a great source of anxiety for me. You often hear people say they hate their voices, or that they can’t stand to listen to themselves talk, but it was different for me. I sounded like a child. My words were blurry — slurred, almost. Talking in front of a group was embarrassing, which made school presentations difficult. Few people could understand what I was saying. I didn’t understand the point of humiliating myself like that, and most of the time just opted for silence. I never raised my hand in class. I begged and pleaded my case managers to include some sort of presentation exemption in my individualized education program (IEP). I did whatever I could to avoid situations in which I might have to, heaven forbid, talk.
Part of it was adolescent melodrama. I freely admit that. But a lot of it was because of trauma. I can think of several situations that scarred me as a child. Reading a poem I wrote as an eighth-grader to an assembly of classmates and their parents, only to realize that no one understood a word of what I said. The applause was delayed, stilted, and accompanied by a ripple of confused looks. Speaking in front of my high school youth group, only to realize that, again, no one had understood a word. (My crush was in the audience that time. That was fun.) A few years later, when I shared my personal testimony in front of that same youth group, I decided to write the whole thing out beforehand and include a transcript as part of a PowerPoint that would be displayed behind me on the big screen.
It worked. The applause was genuine. But it didn’t soften the humiliation. Why couldn’t I have been like everyone else, I wondered, just once?