Notes from my Knapsack 2-6-20

Notes from my Knapsack 2-6-20

Jeff Gill

 

My voice, public and private

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I've been asked about this enough in the last few weeks I thought I'd write a bit about the situation regarding my voice, and the spasmodic dysphonia (SD) that is affecting it.

Yes, I still have SD. It's not something that goes away, you just have to learn how to work with it. It's a neurological disorder, not organic/physical damage to the vocal cords. In fact, my vocal cords are just fine! It's the response of the muscles that work the vocal cords, the spasms of spasmodic dysphonia, which is my disability.

In normal functioning, it comes and goes. SD is most problematic in the normal speaking voice. Ironically, singing -- which uses a different neural pathway -- is almost entirely unimpaired. So I can sing, and I can hyper-project (also known as bellowing) in a normal vocal tone. But there's a price to pay, as normal as it sounds, once I'm back to speaking in a softer tone of voice. In fact, the quieter I try to be, the more likely the spasms will take over.

SD is very in keeping with something you might have heard of: spoon theory (you can look it up on Wikipedia - https://en.wikipedia.org/wiki/Spoon_theory). In spoon theory, you have a finite number of spoons or spoonfuls you can use during the day. I have received some training in how to work around the SD, after the spectacular failure of the Botox treatments injected into the vocal cords that marked the last two years of my vocal recovery. I can with attention and effort make my voice fairly normal . . . up to a point.

But after I use up enough "spoons," even the vocal therapies I've been taught run into the wall of the spasms that are the issue in having SD. I can sing, but it uses up some of those spoons; I can shout and call out loudly, but it burns through spoons. And the total amount of speaking, plus the amount of stress in the day, uses up spoons to where I'm out of options, and the spasms are most of what you hear.

As I've said to many who've asked: the great thing about SD is that in the entire medical history of the world, no one has ever died of spasmodic dysphonia. So it's poorly understood medically, and has few treatment options. That may change in the future, but I'm told not to get my hopes up. I just have to balance out my use of my voice, and how, as well as manage stressors to mitigate the impact on my vocal cord muscles.

Compared to many other disabilities, I am very blessed. This is a small price to pay for age and exertion and likely overuse. But it creates its own problems: foremost being people worrying, when my SD is in full flower, that I'm sick and contagious with something. Sometimes it's that people get the impression I'm getting choked up about something, even though we're just talking about casual matters.

I am scaling back, and making choices, day by day. My speech therapist says it's not likely to get worse, and I'm not doing damage to my vocal cords (even if it sounds like I must be), so I can carry on. It's not painful as much as it is simply uncomfortable to speak sometimes, and that itself is a reminder to be careful, to be cautious, to count my spoons and use them wisely. For everyone who has asked how I'm doing, thank you; for those who catch me in a good moment and assume it's cured, sorry but no; and for those who are helping me deal with this unexpected complication in a highly verbal life, bless you all -- I have more to say, I just have to think through how to say it, and when.

 

Such as in columns such as this one!

 

Jeff Gill is a writer, storyteller, and pastor in Licking County; he's saying "no" a little more often, and hopes you don't take it personally! Tell him how you deal with limitations at knapsack77@gmail.com, or follow @Knapsack on Twitter.