Let me start by saying this:
One major reason I’m writing this is to raise awareness for the disorder I have. I hope this helps other people with this disorder (and maybe other similar disorders) to feel more known and understood.
(I’ve met one person who has this disorder, and our meeting was digital, not in-person.)
The main reason I’m writing this: I feel led to. If God chooses to heal this “incurable” disorder, like I believe He can, then a few more people will know about it, see a miracle, and only be able to explain it by proclaiming that they really did witness a miracle.
Basically, I want to stomp on the devil.
I don’t think he wants me to raise up a community of people who have (and don’t have) this disorder.
Nor does he want me to be healed from it.
Here’s my response: 1 John 4:4.
You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world.
That doesn’t mean a miracle will happen, but I believe it can happen.
Either way, I want to give glory to God.
That’s what this is about.
. . .
I’ve been staring at this screen, chin on my fist…not writing. I wasn’t sure quite what words (if any) would come.
But, we got that out, so we’ve gotten somewhere.
I still don’t know quite how to start this, though, so I’m going to start and see where the Holy Spirit leads from there.
. . .
My Story: Just under two years ago, I started showing symptoms of Abductor Spasmodic Dysphonia (Ab-SD). I was finally diagnosed with Ab-SD in December 2018.
What Is Ab-SD? Basically, it’s a neurological disorder that causes your vocal chords to spasm when you try to speak certain sounds/letter combinations.
It’s Rare: According to NIDCD (National Institute on Deafness and other Communication Disorders), about 1 to 4 in every 100,000 people have Spasmodic Dysphonia.
In that group, ~90% of people diagnosed with SD have aDductor spasmodic dysphonia, rather than what I have: aBductor.
And in that group (~90% of 4 in 100,000 people), most SD-ers get diagnosed around age 30-50. Not age 22.
All that to say, I’m a bit unusual. (My friends are reading this, nodding profusely. Yeah…we knew that much faaaaar before December 2018.) 🙂
ADductor vs. ABductor:
Adductor: Spasms in muscles that close vocal folds, which interrupt speech and cause strained or strangled voice breaks.
Abductor: Spasms in muscles that open vocal folds, which interrupt speech and cause breathy or soundless voice breaks.
(Definitions from The Voice Foundation)
The Cause: Some say it’s trauma/stress-induced, but there’s no one ultimate reason for developing SD.
Botox is recommended as a possible, temporary cure.
Voice therapy is recommended, not to fix the SD, but to teach you to talk in a different register/in a way that’s less-affected by SD.
. . .
That’s the flyover view. If you’re an enneagram 5 and you’re like “Gimme ALL the info” (or you’re otherwise hungry for more details & science-y talk), here’s a good reference for Abductor Spasmodic Dysphonia.
Disclaimer #1: As you read above, I’ve officially known I have this disorder for less than a year. A lot of SD-ers have had this for far longer than me, and their experiences are undoubtedly varied from mine. SO, I’m not pretending to know everything. This is just this baby-SD-er’s experience.
I’m trusting God to help me explain this better than I can on my own, just being truthful about where I’m at in my short journey with this disorder.
Disclaimer #2: Countless people have disorders, diseases, abilities, etc. that are drastically and immeasurably more life-changing, tragic, and really just more awful, than this.
I’m not here to compare my disorder to any other. My goal is to talk about SD. I simply want to give you a transparent heads up on where I’m at right now, in this “season” of Ab-SD.
. . .
It’s changed my life. You may not know it, especially if you don’t talk to me much. Some moments, particularly when I’m in a loud, public setting where lots of people are talking and the attention isn’t all on me, it can be hardly noticeable. That’s a blessing.
Other times, sometimes when it’s a one-on-one, calm setting where conversation is pretty relaxed, every other word is a very uncomfortable struggle.
Painful? Thankfully, Ab-SD isn’t something that hurts all the time. It generally doesn’t cause physical pain in me except when speaking is especially hard and the struggle for breath control (and the resulting unnatural loss of breath from the spasms) bloats my stomach and generally strains my body.
Does it get worse? Also thankfully, SD isn’t known to develop into anything worse. PRAISE. JESUS.
The Deep Dive:
I, as a Quinn (what Annie F Downs would say as “For me, as an Annie”), focus a lot (too much) on what people perceive, both about me and others. As a result, I behave in a way that watches for and responds to the reactions of those I’m communicating with. This is pretty natural for most people, so I know I’m not exactly explaining rocket science here. However, as an actor and as someone who’s fascinated by psychology and human interaction, having a problem with communicating might hit me a little harder.
When I started experiencing Ab-SD “symptoms” (I don’t like that word “symptoms” rn…too medical-y), the way I felt I was being perceived in communication changed. Not a gigantic change, but a small, grinding change that may rarely leave my mind during a conversation.
Why? Because, when my body anticipates that a certain word/sentence I want to speak will induce unwelcome spasming, my brain has trained itself to know what sounds/letter-combos trigger the spasming. As a result, I sometimes wait for my throat to catch up to the speed of the words & thoughts forming in my head. Because of that, I sometimes make it appear as if I’m lost in thought or can’t think of a word. But, pretty often, I’m actually just waiting for my vocal chords to be ready to say the word with less spasming than if I’d said it a few moments earlier/with different words.
Acting: As an actor and communication student, I focus a lot on the impact and importance of communication through vocal intonations, pitch, and other fancy, subtle things. (Communication really is a fascinating art.)
When you have Ab-SD, though, your control of manipulating the way your words are perceived through the social norms/communication hints (intonation, pitch, etc.) is pretty much gone. With Ab-SD, speaking in a higher pitch (for me, at least), is easier, so I sometimes speak that way, whether the emotion and meaning behind what I’m saying quite matches that or not.
As a result, I haven’t auditioned/submitted for many speaking roles since I’ve gotten this disorder. To be honest, I really miss acting. Some days more than others. It’s a passion I sometimes took for granted. It’s a beautiful passion that God has used in so many precious open doors to film and theatre jobs that I’m insanely thankful for.
Clear Communication: This thing has taken a rather heavy toll on me. I love truth. I really value honesty. And knowing that my ability to communicate clearly, through social norms of subtle vocal communication techniques, is compromised due to this disorder that I have little control over is incredibly frustrating for me. I feel like I’m not capable of showing my true self, or that I’m being perceived to be different than I truly am. Transparency feels like it can only go so far when I can’t speak with the natural timing that I spoke with before SD.
There’s a weird shame in that, that sneaks out from the shadows and creeps into your mind, taunting you with lies of low self-worth and deception.
In short, it sucks. It sucks immeasurably less than a thousand other things people I know and people I don’t know have to deal with,
But, it’s where I’m at, and sometimes it really, really sucks.
But, I also know that…
1) God is using this for my good
2) God’s not done with me yet. I’m still breathing. He just might use me in a way that’s different than I expected.
And I recently got to a place where, with God’s help, I’m starting to thank Him for this. It’s honestly taken a while for me to actually say that, but He’s with me in that. And I’m really, really blessed by that.
What You Can Do For SD-ers:
This sounds kind of selfish, but I also think that, if the “shoe were on the other foot” (so cliche…not to mention uncomfortable-sounding), I’d want to know what I should expect and how I could help. We don’t all have every disorder/illness, PRAISE THE LORD, so we sometimes simply can’t know what to do until someone who understands it tells us!
I’ll be posting soon about that, so keep an eye out. (Eep, sorry to keep you in suspense like that…*grins sheepishly but also smugly ifthatispossible*)
For now, I ask for your prayers. That’s a big ask, but I’d be SO grateful. Please pray for healing, but also for God to use me and this, too.
Thank you ❤
. . .
Thank you for listening. I feel kinda weird and kinda selfish, but I also think I’m supposed to do this, so…thanks for reading it.
And thank you to the amazing people in my life who have encouraged me to do this, knowingly or not. God uses you, and I’m really thankful for that!
Soli deo gloria.
Stay tuned. Miracles might be just around the corner, for you and me.
They may not look like what we’re expecting, but let’s not pretend to know more about miracles than the Miracle Worker.
I’m just gonna end this with a prayer.
God, You are perfect, holy, and the definition of awesome. Thank You for promising to work everything for the good of those who love You, who have been called according to Your purpose. (Romans 8:28) Thank You for wisely letting us experience life-changing roadblocks that allow us to see You and the world, and even ourselves, in a fuller, more beautiful way that we ever could’ve before. Thank You for being the One who knows us better than anyone else ever will. That’s so, so cool, God. You’re the best Best Friend anyone could ask for. You’re awesome. Please bless every person who reads this, and please use this–the SD and these words–for Your glory. Amen.
You’re here for a reason, and Jesus sees you. Right now.
You’re not alone.
Side Note: Writing has been a therapeutic gift from my Creator. Journaling is…MMM…thank You, GOD! When I feel like no one really understands me, sometimes including myself, I can turn to the One who actually made me, the One who knows me better than anyone EVER could, and loves me because of & despite that, and that’s one of the greatest gifts of all. Sometimes it doesn’t immediately make me feel better, but it does soothe my aching soul.