Some people think Mother’s Day is a worthless fiction designed to sell cards, flowers, and slinky nightgowns. I’ve always had very special feelings about the day, however, probably because I think motherhood is the toughest job in the whole wide world, the one for which we have the least amount of training and the one to which society as a whole has paid, until recently, only lip service. I love every minute of the day: receiving cards and flowers, talking with adult children on the phone, and celebrating with friends. That’s the way it’s been every year since I first earned the title.
This Mother’s Day, however, will probably stay in my mind as the most memorable I’ve ever experienced. It’s the first one when I couldn’t talk. When I went to church this morning, I couldn’t say prayers along with the rest of the congregation. When the music began, I couldn’t sing. When it came time to shake hands with and greet our neighbors in the pew, I could only mouth the words. When the rector asked how I was, I had to struggle to whisper in his ear. It was not only frustrating, it seemed like a bad joke, since, for the past 20 years, I’ve earned my living as a radio talk show host.
This lack of voice is not simply the result of a bad cold or laryngitis. It’s a more complicated problem called spasmodic dysphonia, a neurological disorder of unknown origin that affects the muscles that control speech. It causes my voice to break and crack and creates difficulties in pronouncing certain words. At times it even prevents me from getting a word out.
It started in a very small way several years ago, with an occasional minor tremor. But as I heard it more frequently my anxiety began to grow, compounding the problem. I hoped that no one else was hearing it but, at the same time, I knew I was fooling myself.
I sought out speech therapists, who explained to me that my breathing habits were incorrect. I wanted to believe that that was all that was going on, but the problem just continued to get worse. Finally, after years of concern about what was happening, I was diagnosed last week at Johns Hopkins University Hospital in Baltimore. No one seems to know why spasmodic dysphonia begins or precisely how many people suffer from it, since many who are afflicted are too embarrassed to seek help. Having a diagnosis is a relief, though the suggested remedy is not particularly attractive.
In my case, the recommendation was for injections of botulin (a bacterial toxin that paralyzes muscles) into the overactive muscles controlling the vocal cords. This will be repeated every four to six months, depending on how successful the toxin is. The immediate result, and exactly what I am experiencing now, is a total loss of voice. Even my whisper is barely audible. The vocal cords are wide open, so all that emerges when I attempt to talk is air. It’s very tiring even to try to talk, since I must take so many more breaths within each sentence.
I once sprained my ankle out in California and, when I returned home to Washington, had to emerge from the plane in a wheelchair. The view, as I quickly realized, was very different in that confining device, and people looked at me with curiosity. I wanted to explain to each and every one that this wasn’t the way I normally got around. I found myself, for the very first time, understanding what it feels like to be different.
In the same way, the absence of my voice has shifted my way of thinking, in that I now have greater appreciation for silence. Of course my voice is absolutely necessary if I am to continue my work for WAMU and NPR. But there’s a curious contradiction going on. The less I say, the more I hear. Someone’s sending me a message, and maybe Mother’s Day was precisely the right day for me to hear it.
Diane Rehm,
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