I’m 15. It’s lunchtime and I'm in a school canteen permeated with the smell of sweat, bacon and fried chips. I’m patiently waiting for my turn. I have enough coins for a salad roll and strawberry milk. The woman behind the counter smiles and asks what I would like to order. I open my mouth and say ‘I vud liikke sa-aaa-laa-d roll’. Upon hearing myself, I turn red and feel my ears burning. I know that she could not understand me so I try again but the muscles around my throat tighten and I can’t get the words out right. The syllables disappear in my mouth and I sound breathy as if I have just run around the block. When the people behind me in the queue become impatient, I point at the ‘salad roll’ and don’t bother asking for the milk.
At first, I assume that it is a symptom of the common cold but as days go by I figure that the choppy voice and breathlessness are here to stay. Teachers often ask if I am nervous or have a sore throat and some of the students at school call me ‘the hiccup girl’. I become withdrawn and start spending lunchtimes in the library instead of hanging out with friends. After a decade and a half, doctors diagnose me with spasmodic dysphonia, a rare neurological disorder affecting 2 in 100,000 people and put an end to my suffering. Well, kind of.
Our larynx, the triangle shaped organ that houses our vocal cords, is located on top of the neck and functions a bit like an accordion. When we speak, our vocal cords vibrate more than a hundred times per second to create sounds. Mine don’t because they have a mind of their own. Spasmodic dysphonia occurs when vocal cords experience sudden, involuntary movements and interfere with the voice quality. It mostly affects women between the ages 30 and 50 but the cause is still undetermined. Some doctors believe that it is triggered by stress or anxiety which is a likely story in my case.
When we speak, our vocal cords vibrate more than hundred times per second to create sounds. Mine don’t because they have a mind of their own.
When I was a student in Turkey, my teachers used to say that I could talk under water. I was loud, well-spoken and a proud member of my school’s oratorio team. I often hosted the school events on stage and told people that I was going to become a news anchor someday.
At the age of 14, I moved to Australia with my family. My English vocabulary was limited to ‘yes’, ‘no’ and 'I love you’ which was not enough for communication. Straight away I disliked the idea of living in a country where I could not convey my thoughts comfortably. There was a lot of pressure on me to learn English and it was around this time that my vocal cords started to betray me. I felt that I was stripped off my words, my voice and my identity.
My English vocabulary was limited to ‘yes’, ‘no’ and 'I love you’ which was not enough for communication.
Even after I became fluent in English, I still found it difficult to pronounce certain sounds such as ‘D’ and ‘K’ due to the spasms. I developed bad speech and many people thought that I had a ‘strange’ accent from an exotic distant land. What they didn’t know was that I was experiencing the same problems in my native tongue. Being an outsider in a foreign country where I was constantly told that I had sounded like an alien really took a toll on my mental health. I spent a fortune on throat specialists who referred me to speech therapists who said that it was all in my head and that I should see a psychologist. Nobody knew why I spoke the way I did but I was often judged as someone over-emotional or incompetent.
In my mid-twenties I went back to university to do a degree in journalism. Taking part in class discussions was compulsory and it required fast and fluent speech. I was too scared to open my mouth in front of my classmates and whenever I did, I had to repeat myself. During a consultation session with one of my lecturers, she commented on my quietness and said that nobody was going to employ me for being nice. "You've got to learn to be loud" she said. "Get involved in radio. Get some experience."
I left her office thinking that I didn’t have what it takes to be a good journalist and dropped out of university. That very same day, I sat in front of my computer with a bottle of wine and started Googling my symptoms. Hours of research led to a YouTube video. When I clicked on it, I broke into tears. The young man in the video was talking about having a condition called spasmodic dysphonia and it was the first time ever I had heard anyone who sounded like me. I finally knew that I was not the only person in the world who choked on her words and there was even a name for this condition. Soon, I was formally diagnosed and it was one of the most empowering experiences of my life. I felt like I was freed from having to lie about being sick or constantly explaining myself.
The only treatment available is having botulinum toxin (Botox) injected to the larynx every three to six months which weakens the muscles and helps with the spasms.
Unfortunately, there is no cure for spasmodic dysphonia. The only treatment available is having botulinum toxin (Botox) injected to the larynx every three to six months which weakens the muscles and helps with the spasms. On the downside, injections soften my voice and I end up sounding like a six-year-old child for the first few weeks. Because it is such a rare illness, most people are still unaware of its existence. Very often, I find myself in a position where I educate others about my invisible condition so that I won’t be judged.
After my diagnosis, I re-enrolled into university but I had completely given up on the idea of studying journalism. This time, I chose a course in teaching and when I opened up to one of my lecturers about my condition, she told me that I should have picked something else to study. I did not listen or quit. I have worked as an ESL teacher for seven years, until I lost my job recently because of the pandemic. With the help of the Botox injections, teaching English to the international students has become a way for me to reclaim my voice and help those who are in a similar position.
Only recently, I have noticed that the years of silence have led to the accumulation of a lot of anger and grief inside of me. I still have days when I find it difficult to express myself through speech and because of that, I have turned to writing. Right now, I am doing a master’s in creative writing and trying to unearth the voice that has been hiding in me for decades. Negotiating who you are through writing is a tough job and I know that I have a long way to go but my characters have so much to say. And I find that very motivating on its own.
Deniz Agraz is a freelance writer.