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?
My speech has improved over the years. I almost sound normal. But I still get anxious about my voice, and I still carry all those traumatic experiences with me. It took me more than a year to get to a point of comfort with my Dungeons & Dragons group. I still have bad days, days where I hardly say a word. I’m incredibly uncomfortable around strangers and tend toward silence during group activities. It’s not just the fear of being misunderstood; it’s the exhaustion associated with screaming myself hoarse, all to be heard in a room full of people. It’s dreading that blank stare, half-hearted nod — sorry, I just can’t understand you.
An important part of the admissions process for the master’s program I’m interested in is the faculty interview. This Wednesday, I will meet with someone in clinical mental health counseling, and, in many ways, my career depends on how it goes. My speech has improved over the years, but instant messaging platforms hardly do my voice justice. I’m worried they won’t be able to understand me. I’m worried my anxiety will get the better of me. I’m worried my fear of embarrassment and humiliation will prevent me from doing my best.
I tell myself that if I was able to endure the entirety of middle school, I can do this. I have no choice. Like in primary school, there is only one way out: Get through it.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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