I had a cold. Then laryngitis. Then my whole world changed. Lest that sound like hyperbole, let me explain. Once I was a single mother of four young children. They were the smartest, most beautiful children on the planet. They deserved great schools, beautiful things, limitless opportunities, a mom who was always there after school with cookies and milk. Instead they got poverty and…well, that’s another blog post entirely—let’s just say not the sparkling life I had envisioned for us. We were poor, really poor, but through sheer determination and hard work, I managed to work my way up in local television to a dream job. I remarried; we bought a house, my kids had clothes, a computer; I went to their plays and games. Then one day I lost my voice. Just like that. It broke, it dropped out, it cackled, it caught in my throat.
My professional position was twofold: Director of Operations and Director of Marketing and Public Relations. In those roles, I led meetings, made presentations to corporate, served on community boards, interacted with the press and sold clients on ad campaigns. I led a creative team to produce local programming, commercials and promos. My job was communications, and suddenly I couldn’t communicate. At department head meetings, the other managers lowered their heads and looked away when I spoke. My role in presentations was reduced and then eliminated. My boss spoke sharply to me, critical of my affliction, as though I should be doing more to fix it. I had, of course been to doctors, had tests, spent months in voice therapy—all to no avail.
I have a vocal cord condition called spasmodic dysphonia. It is a neurological movement disorder, in the family of such conditions as Parkinson’s Disease or Huntington’s Disease. Though it affects the vocal cords, they are not the cause. Neither is it caused by stress, diet, or failure to embrace Yoga. It is the failure of the correct brain signals to reach the vocal cords that causes them to go into spasm and either close up, not allowing through the air necessary to form words, or stay open, so that sounds come out breathy and unformed. The voice loses volume, articulation and expression. People with spasmodic dysphonia have to squeeze their voice out; we push and struggle to speak. It comes out sounding like anything from a whisper to a squeek. At present, it is not curable.
For some reason, spasmodic dysphonia is at its worst when speaking on the phone. I remember the time, long after I had left the TV station and joined my husband in his photography business, when I answered the phone and was asked if I was all right and did I need help. Taken aback at first, I soon realized that my voice sounded as though I was crying or terrified or both. I reassured the potential client that I simply had “lost my voice.” After that, I stopped answering the phone without first checking caller ID.
People with SD tend to create circles of safety around them. Their worlds become smaller as they stop using the phone and communicate with only a select few. Many depend on spouses and family members for making reservations, dealing with sales people and even communicating with friends. Email was a blessing for me, but voice activation is a nightmare—and Siri is my declared enemy. I hate her. The Bluetooth idiot in my car is no better. My small grandchildren break into peals of laughter when I try to activate a phone number. “Call Chris,” I will say, and she will respond with, “Calling Ginny.” Sometimes the kids try to help, shouting out, “No, call KEVIN, call EMMA, call GRANDPA,” totally confusing the Bluetooth idiot, and we all laugh, but I think, what if I had to call 9-1-1?
No one knows exactly what causes SD—in some cases, it may stem from an injury, in others it may simply be a trick of our DNA. The most common treatment is botox injections. With some trepidation, I gave it a try. Patients are injected through the throat and into the vocal folds. The botox relaxes the vocal cord muscles, much like it relaxes the lines on your face. The idea is to prevent the spasms that make speech so difficult. When the shot proves successful, the result lasts on a curve of two- three months, during which the voice gets better, better, nearly normal, not as good, back to spasms. My first time, either the needle missed, or the muscles didn’t respond—nothing changed; the second time, the result was a relatively normal speaking voice for a short period of time; the third time, my voice disappeared entirely for several weeks—and I mean disappeared, i.e. no sound at all. Not to mention difficulty swallowing. My great fear was no longer inability to call 9-1-1—it was choking to death!
I like to think that every malady has a saving grace, and mine has several. For one, it is not life-threatening. And, I can still see, hear, write, read and walk. But the greatest grace has been my grandchildren. They don’t care. They laugh at me when they think my voice is funny and protect my feelings at critical times. My fourteen-year-old still wants me to sing to her at bedtime, though I can barely cackle out a note, but my five-year-old covers her ears when I sing a song in the car. “No, stop,” she shouts. “Awful!” My seven-year old says simply, “Grandma, I love your voice.”
In Secrets of Bari, Amelia Allegra develops spasmodic dysphonia just as her carefully constructed world falls apart. She has dealt with physical disability as long as she can remember, but, in some ways, the less visible malfunction of her voice is a more critical loss. While writing Amy’s story, it was important to me that my readers understand the impact this new setback had on her sense of self in relation to the speaking world around her.