Scott Adams and Spasmodic Dysphonia
Dilbert creator Scott Adams was stricken in 2005 with a rare condition called Spasmodic Dysphonia, which prevented him from speaking in a normal voice. The condition is somewhat bizarre, because sufferers can sometimes sing or speak in unusual circumstances, just not with their normal voices. The condition has struck a variety of famous people (according to Wikipedia), including Darryl McDaniels of Run DMC, and Diane Rehm from NPR.
For Adams, the condition meant he could still speak publicly, sing, or speak to himself while alone. But in normal circumstances his vocal cords would seize up and he simply couldn't speak. And to make it worse, Adams reported that no one has ever recovered from the condition. In late 2006, Adams noticed that he could speak perfectly in rhyme. So he repeated a rhyme ("Jack Be Nimble") over and over, and then...something changed. Since then, he has been able to speak semi-normally. It's not perfect, but he reported in January that he is still in a state of partial recovery.
After the jump, read Adams's report of his original recovery. I would just link to it, but his blog entries from that period have disappeared.
Good News Day
As regular readers of my blog know, I lost my voice about 18 months ago. Permanently. It's something exotic called Spasmodic Dysphonia. Essentially a part of the brain that controls speech just shuts down in some people, usually after you strain your voice during a bout with allergies (in my case) or some other sort of normal laryngitis. It happens to people in my age bracket.
I asked my doctor - a specialist for this condition - how many people have ever gotten better. Answer: zero. While there's no cure, painful Botox injections through the front of the neck and into the vocal cords can stop the spasms for a few months. That weakens the muscles that otherwise spasm, but your voice is breathy and weak.
The weirdest part of this phenomenon is that speech is processed in different parts of the brain depending on the context. So people with this problem can often sing but they can't talk. In my case I could do my normal professional speaking to large crowds but I could barely whisper and grunt off stage. And most people with this condition report they have the most trouble talking on the telephone or when there is background noise. I can speak normally alone, but not around others. That makes it sound like a social anxiety problem, but it's really just a different context, because I could easily sing to those same people.
I stopped getting the Botox shots because although they allowed me to talk for a few weeks, my voice was too weak for public speaking. So at least until the fall speaking season ended, I chose to maximize my onstage voice at the expense of being able to speak in person.
My family and friends have been great. They read my lips as best they can. They lean in to hear the whispers. They guess. They put up with my six tries to say one word. And my personality is completely altered. My normal wittiness becomes slow and deliberate. And often, when it takes effort to speak a word intelligibly, the wrong word comes out because too much of my focus is on the effort of talking instead of the thinking of what to say. So a lot of the things that came out of my mouth frankly made no sense.
To state the obvious, much of life's pleasure is diminished when you can't speak. It has been tough.
But have I mentioned I'm an optimist?
Just because no one has ever gotten better from Spasmodic Dysphonia before doesn't mean I can't be the first. So every day for months and months I tried new tricks to regain my voice. I visualized speaking correctly and repeatedly told myself I could (affirmations). I used self hypnosis. I used voice therapy exercises. I spoke in higher pitches, or changing pitches. I observed when my voice worked best and when it was worst and looked for patterns. I tried speaking in foreign accents. I tried "singing" some words that were especially hard.
My theory was that the part of my brain responsible for normal speech was still intact, but for some reason had become disconnected from the neural pathways to my vocal cords. (That's consistent with any expert's best guess of what's happening with Spasmodic Dysphonia. It's somewhat mysterious.) And so I reasoned that there was some way to remap that connection. All I needed to do was find the type of speaking or context most similar - but still different enough - from normal speech that still worked. Once I could speak in that slightly different context, I would continue to close the gap between the different-context speech and normal speech until my neural pathways remapped. Well, that was my theory. But I'm no brain surgeon.
The day before yesterday, while helping on a homework assignment, I noticed I could speak perfectly in rhyme. Rhyme was a context I hadn't considered. A poem isn't singing and it isn't regular talking. But for some reason the context is just different enough from normal speech that my brain handled it fine.
Jack be nimble, Jack be quick.
Jack jumped over the candlestick.
I repeated it dozens of times, partly because I could. It was effortless, even though it was similar to regular speech. I enjoyed repeating it, hearing the sound of my own voice working almost flawlessly. I longed for that sound, and the memory of normal speech. Perhaps the rhyme took me back to my own childhood too. Or maybe it's just plain catchy. I enjoyed repeating it more than I should have. Then something happened.
My brain remapped.
My speech returned.
Not 100%, but close, like a car starting up on a cold winter night. And so I talked that night. A lot. And all the next day. A few times I felt my voice slipping away, so I repeated the nursery rhyme and tuned it back in. By the following night my voice was almost completely normal.
When I say my brain remapped, that's the best description I have. During the worst of my voice problems, I would know in advance that I couldn't get a word out. It was if I could feel the lack of connection between my brain and my vocal cords. But suddenly, yesterday, I felt the connection again. It wasn't just being able to speak, it was KNOWING how. The knowing returned.
I still don't know if this is permanent. But I do know that for one day I got to speak normally. And this is one of the happiest days of my life.
But enough about me. Leave me a comment telling me the happiest moment of YOUR life. Keep it brief. Only good news today. I don't want to hear anything else.
SOURCE: The Dilbert Blog (link currently dead) 10/24/06.
See also: an MSBNC article on the situation.