(RNS) — In May, I came down with a virus just as we were set to travel to Italy for a long-awaited vacation near the Mediterranean with friends. The doctor cleared me to travel after I tested negative for strep, COVID-19 and the flu, but I still had trouble speaking for a week after that, which was weird.
I whisper-joked that if you have to travel somewhere in the world where you can only communicate by pointing at things and wildly gesticulating to get your point across, Italy is totally the right destination.
Bonus: lots of medicinal gelato.
One day in Florence I suddenly woke up and could speak again, which was cause for celebration. I had no problems for the remainder of the trip.
But then in June I lost my voice again for a couple of days with no explanation, and later that month a third time for a longer period. I made an appointment with an ENT and got tested at the beginning of July. This is where they stick a camera through your nose to scrutinize your whole sinus system while you do various awkward-sounding vocal exercises.
I was expecting to be told that I’d developed a new allergy. Instead, the ENT said my vocal cords weren’t closing enough to vibrate against each other and produce sound, which was likely a neurological problem.
Soon, I had been diagnosed with spasmodic dysphonia, or SD, later confirmed by a speech pathologist wielding a more sophisticated camera system.
I didn’t understand what this was until I got home from the first appointment and began reading about SD and saw alarming phrases like “no cure” and “lifelong condition.” SD is rare, though no one seems to know exactly how rare. Estimates range from as few as 1 in 100,000 people (which would be only 3,400 people in the U.S., and sounds way too low) to something like 30 in 100,000.
I also learned that most SD patients — notably including NPR journalist Diane Rehm — have the “adductor” type, which is treatable with quarterly Botox injections to the vocal folds and sometimes with surgery, as with Dilbert cartoonist Scott Adams. I, however, have the rarer and less treatable “abductor” type, known as ABSD.
Lucky me. Treatment for ABSD sounds a bit Wild West-y: One 2019 study found that surgery was successful for all of the ABSD patients in the study. Great news! How many patients were in the study, you ask? Why, a grand total of six.
I spent part of the July Fourth weekend curled up in a ball, ostensibly to comfort my dog Zeb, who was also curled up in a ball because of all the firecrackers going off day and night. My husband spent the weekend trying to comfort the two of us and also asking me to please, please stop Googling my diagnosis since doing so clearly wasn’t helping my emotional health.
Right now I’m in a holding pattern of sorts, where sometimes I can speak normally and sometimes I’m reduced to barely whispering.
It’s hard to explain how that feels. It doesn’t hurt, exactly. My voice sounds like I have the worst sore throat of all time, and people are often sympathetic when they hear it (or else terrified that I should be masked because I’m probably super-spreading some virus). But my throat is fine — no inflammation or impediment at all.
The problem is with the way my brain is communicating with my vocal cords, something I’ve taken for granted for 55 years without ever once thanking my workhorse of a brain. (Reader, have you thanked your brain today?)
So, it doesn’t hurt, but it’s challenging even to whisper. It reminds me of what yoga instructors say when a particular pose is crazy hard: that it is “effortful.” Speaking requires a lot of concentration now, and can leave me feeling exhausted or even dizzy and lightheaded. I find myself doing a new kind of calculus: Do I really need to say that? How much will it cost me to be part of this conversation?
I’m starting to understand what I’ve been reading about the social isolation this condition can cause, and how some patients become anxious and depressed. I’m an extrovert. I love being around people, and I crave that interaction. Yet now I find myself withdrawing when I can’t speak. There are new humiliations each day, like having to get someone else to order for me in a crowded, noisy restaurant. Or having my voice give out completely while reading a story to my grandson.
I’ve been working hard these last few weeks on a couple of things. The first is just the pragmatic stuff, like researching my condition and possible treatments (not encouraging), joining an online support group (much more encouraging) and learning more about the possibility of using artificial intelligence to re-create a reasonable facsimile of my voice (very encouraging).
As I write this, my voice sounds fine — a period of “remission” that could last weeks or could end later today. I have no way of knowing.
Which leads to the second thing I’m working on, which is staying curious. I have been learning a lot about the human brain! One of the strangest things I learned after my diagnosis was that many SD patients can still sing even though they can’t speak. WTF, I thought. So on Sunday of the July Fourth weekend, when I still couldn’t speak much at all, I experimented by singing along to my Sunday playlist in the car on the way to church. And I could still sing! I arrived at church crying with joy at this discovery.
The speech pathologist told me that singing is processed in different regions of the brain than most spoken language is, and apparently that wiring is not short-circuiting. I’m so grateful. I can also still laugh, cry, sneeze and cough at regular volume. (My sneezes continue to be pretty epic, actually, not to brag.)
As part of staying curious, I have been praying about my disability. I’m not praying for healing, just for a little more understanding and gratitude, a little less raw grief. I’m fortunate to live in a time when there are so many communication options beyond verbal speech. I’m fortunate that I had a doctor who recognized this rare variant of an already rare condition right away.
SD is a condition that primarily affects middle-aged women, a group whose medical concerns are too often dismissed out of hand. As I’ve read some of their stories of how long it took to get diagnosed — and how often they were told just to gargle or drink ginger tea for what turned out to be a neurological disorder — I’ve realized how lucky I am to have had an ENT who knew exactly what he was looking at and took me seriously.
And I’m grateful that even though SD is rare, I actually have a friend who has it. (My husband, on learning this, said, “Of course you do.”) I was able to drive right over to visit with author Sarah Stankorb and share my fears with someone who has successfully managed this condition her whole adult life. People like Sarah and Diane Rehm inspire me because they’ve shown how to live with SD and not become voiceless, which is my greatest fear about the disability.
I will not become voiceless either, no matter what lies ahead.
Related posts:
RNS interview with Sarah Stankorb about her book “Disobedient Women”