“I am not my vocal disorder”

Project Description:

One summer day when I was twelve, I woke up and my voice sounded horribly broken and strangled. I thought I was sick, but my voice didn’t get better that week, that month, or that whole season. In fact, it would be seven years before I sounded normal again. I had developed adductor spasmodic dysphonia, a rare neurological disorder that I was told was incurable. I was told I would sound this way for the rest of my life, and that crushed me. My new voice was part of me that I just could not accept; it sounded awful, and, whenever it escaped my mouth, people would stare at me, laugh at me, or tell me I sounded weird, as if the voice in my head didn’t already offer that criticism and harsher every time I spoke. My self-esteem was destroyed, and I began a seven-year process of extreme withdrawal into myself, a quick downward spiral into deep depression, and the development of debilitating social anxiety.

Life became a nightmare. Everything that I had taken for granted before – ordering food at restaurants, going out to movies, asking store clerks for help, raising my hand to answer a question, speaking to relatives on the phone, making small talk with strangers – was, at best, anxiety-inducing to the point that I developed gastrointestinal problems and my heart would beat so fast I’d nearly pass out, and, at worst, impossible. There were times when I literally could not get the words out. School, which I’d always loved, was the bane of my existence. I hated the teachers who would still call on me and considered every possible excuse to miss class on the days I had to give presentations. I lost a lot of friends and couldn’t make new ones, both because I struggled so much to speak, and also because I was so wrapped up in my resulting misery. I was utterly alone.

This past summer, at nineteen, I came across an article in an online medical journal detailing the success of an operation called a Selective Laryngeal Adductor Denervation-Reinnervation (SLAD-R) in curing patients of adductor spasmodic dysphonia. In disbelief, I showed my parents, and just over a month later I was on an operating table in UCLA having the procedure done. Exactly three months after my surgery, my voice came back. It sounded normal, which to me was the most beautiful way it could sound. Today, it has been seven months since my surgery, and my voice is still music to my ears. Everything about my life has changed in the most positive ways.

As odd as it is that the otolaryngologist I had seen for my spasmodic dysphonia throughout much of my adolescence did not tell me about SLAD-R, it is hard for me to be upset about that when I am so overjoyed and relieved to have my voice back, even if it is seven years later. However, despite my joy and relief, I am still haunted by the memory of the shell of a person that I let spasmodic dysphonia turn me into. For me, the most horrific part of the experience was the dark place that I slipped into, and the fact that, if it weren’t for my surgery, I might never have come out of it.