Last May I started having trouble with my voice. I figured it was allergies. But it didn’t get better when allergy season ended. Eventually I went to the doctor and he told me it might be acid reflux. I popped the anti-reflux pills and waited for the cure. But it only got worse. On the next trip my doctor diagnosed it as bronchitis, which I think it probably was at that point. No problem. I popped the antibiotics, and waited for the cure. But my voice kept getting worse.
After a few months of worsening I could only talk in certain situations. I could speak perfectly when I was alone. And I could speak perfectly when I gave a speech to a crowd. But I couldn’t speak intelligibly on the phone or in one-on-one conversations. I’d try to talk and literally nothing would come out. The best I could do was a whisper. Obviously I was nuts.
So I consulted my doctor again and he referred me to the “obviously you’re nuts” doctor who said, essentially, “Obviously you’re nuts.” She thought maybe Paxil would help, since my problem seemed to have a social trigger. I said “no thanks” and continued down the specialist trail.
My trip to the ear, nose, and throat doctor was an adventure. His job was to look for polyps. My gag reflex was too strong for the “direct route,” as he put it, so he said he would need to look via the “indirect route.” He pulled out a two-foot long tube thing with a camera on the end and started greasing it up. At the sight of this device, and not knowing exactly what the “indirect method” involved, my sphincter slammed shut and I started yelling “Nooooo!!!” But it turns out you can get to the throat via the nose. This is not pleasant, but compared to the alternative I was delighted.
There were no polyps in my throat, and so that possibility was ruled out. However, my nasal passage was described as “10 miles of bad road,” so I had surgery to straighten that out just for good measure. That hurt a lot, but it worked out great as far as breathing. Unfortunately I still couldn’t speak, and it was getting worse. And I had a bunch of speaking engagements upcoming. Could I still speak in front of a crowd? I didn’t know for sure because my voice had worsened since the last time I tried.
I don’t know how many of you fear public speaking. It normally doesn’t bother me. But when you’re standing back stage while a thousand people are waiting to hear you speak, and you don’t know whether you’ll be able to utter a peep, that’s some scary shit. But amazingly, I would go from barely able to whisper back stage to normal voice on stage. Obviously I was nuts.
That’s when Google saved my sanity. I was taking a shower one day – that’s where all my good ideas are born – and I started to wonder if my bizarre throat problem was related to my bizarre hand problem. My right pinky goes into spasms when I try to draw on paper, yet I have no problem drawing on a computer even though I hold the stylus just like a pen. I knew from experience that this too had seemed like I was nuts until I found the right doctor to diagnose it.
I dried off and Googled “dystonia” – the name for my hand problem, plus “voice.” Bingo. There’s a rare neurological condition called a spasmodic dysphonia with voice symptoms identical to mine. When I played the online voice samples of people who have it, they sounded just like me. The symptoms are amazingly specific, as in “can speak clearly while yawning but can’t speak on the phone.” And “can sing but can’t speak in normal voice.” There’s even a propensity for this condition to pair with another dystonia, like the one in my hand.
Now all I had to do was convince my doctor(s) that I wasn’t nuts and that I had a very rare condition. As you might imagine, when you tell a doctor that you think you have a very rare condition, that doctor will tell you that it’s very unlikely. Your first impulse might be to point out that “very rare” is a lot like “very unlikely,” but you don’t do that, because doctors have wide latitude in deciding which of your orifices they will use for various medical apparati. So you go with the protocol which involves systematically eliminating all the things that are more likely.
The next speech doctor had access to better technology than the first and determined that I almost certainly did not have the rare neurological disorder that both I and Google insisted I did. She based her opinion on how I sounded and the fact that it was very unlikely that I would have a very unlikely condition. But she did notice a facial tick that might indicate a brain tumor as the culprit.
So off I went to the neurologist who tapped me in various places with a rubber hammer and stared at me for a while and didn’t see any ticks. But she thought maybe an MRI was in order just to eliminate the possibility of a brain tumor. That test came out clean.
By that time, I don’t mind saying I was fighting off a powerful cloud of depression, partly because so many people assumed I was nuts, and partly because I couldn’t have any sort of normal social interaction. It was like observing life as a ghost. I was there, sort of, but I couldn’t speak in most situations. My entire personality depends on being witty and charming. Relying instead on my good looks isn’t a good Plan B. I learned that loneliness is only solved by speaking, and not by listening. I was dying inside. If this problem wasn’t fixable – and so far my doctors were stumped – the quality of my life was going to plunge about 80% for the next 100 years that I planned to live. I’m an optimistic guy, but there’s no amount of positive thinking that can fix that sort of thing.
Eventually, as the medical protocol worked its way out, I found my way to a neurologist who specializes in my alleged rare neurological disorder. She listened to me for about 30 seconds and said essentially “Yup. That’s it.” Google was right. The good news is that I wasn’t nuts. The better news is that there is a well-established treatment. The bad news is that the treatment is not fun.
The treatment involves Botox™ injections to the vocal cords several times a year. Botox temporarily deadens the muscles that cause the spasms that choke off the voice. Apparently those muscles aren’t good for much besides misbehaving, so you can stun them with minimal side effects.
If you’re squeamish, skip this paragraph. I’m going to describe the process. The neurologist sticks two electronic sensors on my neck so she can determine when the needle is in the right spot. Then she gives me a local anesthetic on the neck below the adam’s apple. This is just preparation for the bigger and nastier needle that will deliver the Botox. The Botox needle goes through the front of the neck and then she works it toward the inside back of the throat where the vocal cords are. When she’s near the right spot, she tells me to say “eeeee.” Then when the needle touches the right place, her electronic gizmo goes all static and she plunges in for the first shot. The needle stays in the front of my neck as she maneuvers it to the other side of the inside of my throat and repeats. It doesn’t hurt as much as it would seem, but the creepy factor is through the roof. You can feel the needle inside your neck the whole time. The “bad part” takes about 60 seconds, and believe it or not, you can actually get used to it. Kind of.
A week after the first shot, and right on schedule, the nerve endings in my neck took a holiday and my voice returned. My voice isn’t perfect, and I need regular booster shots, but the treatment works, especially when giving speeches. I’ve given two speeches since starting the treatments, including one this afternoon, and everything was terrific.
I learned that different parts of your brain process speech depending on the context. My telephone speaking context is still a challenge, but my giving-a-speech context works well. I’m not so nuts after all.
On my follow-up appointment, my doctor asked if the Botox worked and I just hugged her. Speaking seemed redundant. Now when I speak to people – for any reason – I am so freaking happy I can’t even describe it. And when I speak to a packed ballroom, like today, I feel reborn. It is pure joy, and I feel like the luckiest guy in the world. Every day feels like a gift now. And that, my friends, is the rarest neurological disorder of them all.