Honest Thoughts on/Helps for SD

Dark clouds over the green countryside

“Let’s Groove” by Earth, Wind, and Fire is jamming.
Before you think I’m really cool, maybe I should say that my introduction and main reference point for this song is the movie Kronk’s New Groove.
Still cool?

I’m a little “feelingsy” tonight.

So I jammed to music in the kitchen while making chocolate-covered raisins. The sweet little turds are now in the freezer, setting.

I’m feeling said emotionssss because of a few things, partly due to SD (Spasmodic Dysphonia, which you can read more about in my earlier blogs or through the actual medical community.)

For whatever reason, speaking is harder today. If you have SD, your definition of “harder” might be different than mine. For me, it usually means that the muscle spasms in my vocal chords are so intense that my stomach is bloaty and uncomfortable as a result of the spasms messing up my breath control, etc.

The physical pain isn’t awful; it’s the emotional toll that hits me harder.
When I find myself unable to express myself vocally like I want to, it’s weirdly personal and guilt-inducing. It’s frustrating, yes, but it cuts deeper than an annoyance. Maybe it’s my personality, but it cuts into my soul when I feel like I’m not giving someone physical and vocal cues that help them interpret my meaning.
In simpler words, I don’t like feeling misunderstood, because it makes me feel like I’m not myself.

These are the feelings that the devil thrives on.

The farther down the sinister path of lies I walk down, the more excited the devil gets. If he can get me to hate myself, the further away from God’s truth, light, love, and power I am.

A decision must be made.

Do I lean into the tempting lies of self-hatred, defeat, and shame?

Or do I see those and run straight to my heavenly Father, who’s waiting for me with arms spread open in the safest embrace?

In my life group this week, we talked about the importance of noticing things like “triggers” and taking those captive to God, inviting Him into that and letting Him shift our perspective as a result.

When I invite God into that “I hate that I can’t express myself”–>”I hate my voice”–>”I hate–“, I suddenly feel not alone. The scary loneliness isn’t as intimidating when I’m safe at my Father’s side.
And not just that. I’m standing in the strong shadow of my Father’s wings. He’s got me. I have no reason to fear. He knows what’s going on–I don’t have to open my mouth and forge through the pain to explain it to Him; I can just be, submitting the fears and lies to Him. That’s the BEST place for them to be–in His strong, just, forgiving hands.

When I invite Him into that darkness, I remember that He has a plan for me.
Since I’m a Christian, I stand on His Word, which tells me that He’s going to work it all out for my good. (Romans 8:28)

. . .

It’s not easy.

But when I remember that I’m not doing it alone, that I’m here for God, and that He’s way big enough to work this out for my good…it’s richer.

And when the “mountaintop” experience comes after the valley, I’ll see it in a brighter light.

The more valleys we walk through with God, the more beautiful the mountains will be. And, while we’re on that mountain, we can praise Him with all that’s in us, remembering where we were and where we are now, thanks to Him. And, when we’re in another valley, we can remember what happened when we invited Him into it last time.

Another cool thing that comes from trials is that we can see ourselves grow. I love that God created us to be ever-learning and growing. That’s the beauty of life, isn’t it? Because our Creator is infinitely creative and intelligent, life is an endless adventure of growing and stretching.

Today, as I was noticing the extra bad spasms in my throat, God gently reminded me of how I’ve grown: “Hey, when these first started, that wouldn’t have been your response. You’ve grown! Did you notice?”
He’s the best encourager. ❤ Thank You for being an intentional, loving Father!

SO.

Some helps (with SD or your fill-in-the-blank burden):

Talk to God
Matthew 5:5-15
When you feel like you’re about to explode, pause. Talk to God. Be real. He can handle it. Let yourself feel what you’re feeling, and surrender it to Him.
JOURNAL
It helps me SO much. I can express what I’m feeling without using what’s hurting my body: my voice.
Have a dance party
Turn up the fun, uplifting music!
Having that physical positive distraction can be really freeing and therapeutic for me!
(Pretty sure this isn’t the first time I’ve given this advice, and it probs won’t be the last.)
Give yourself grace
Don’t beat yourself up for what you can’t do. Like I said, that’s probably the hardest part of SD for me. Whether it’s with acting or just regular communication, SD can really get in the way, and that burden can easily weigh on me.
For me, taking a beat and allowing myself to not respond, to not initiate conversation, and to be free with that hard decision makes a huge difference. That may not work in every situation, but if I’m talking with someone I’m really comfortable with, I can just motion to my throat and they know that I’m needing to revert to non-vocal communication. That can feel like defeat–I know–so ask God to help you see it as something beautiful. When you are weak, then you are strong. 2 Corinthians 12:10
Remember: We’re not here for us
I know I said that before, but it’s worth mentioning again. It kinda takes the drive to strive and master all the things off my plate; the pressure’s off.
Reminding myself of Psalm 37:4 is HUGE for me. Try it ❤
Play a game
Self-explantorily good, bro.
Watch a funny video
Some of my favs:
Trey Kennedy’s That Friend that does Wayyy Too Much
John Crist’s Pyramid Scheme University
Studio C’s Nintendo video
Tim Hawkins’ My Favorite Bible Verse
John Crist’s Millennial International
Nate Bargatze’s Netflix Special, The Tennessee Kid
Worship
Turn on “Waymaker“, “Awesome“, or whatever gets you in that worshipful posture and attitude, and let go. God sees you.
Stay connected
Get rid of anything in your mind that says you aren’t allowed to reach out for help. This is honestly a really hard one sometimes, so please rest in the fact that you’re not alone in not wanting to do this.

. . .

In an effort to tie up the beginning and end, I’m now eating the chocolate-covered raisins. And now “Jump (For My Love)” is playing. Wow, I guess it’s 80s night. I’ll take it. 🙂

. . .

I’m relatively new to SD. What helps you? I want to learn from your experience!

7 Things about My SD Experience & BONUS responses!

First off:

If you haven’t yet, please check out
UPDATE: I have abductor spasmodic dysphonia (whattheheck is that?)

Then read this 🙂

In short:
Ab-SD (abductor spasmodic dysphonia) is a neurological disorder that affects your vocal chords that I started developing about 2 years ago and was diagnosed with in December. It sometimes makes “regular” communication extremely challenging & physically and emotionally exhausting.

7 Things about My Experience with SD:

I don’t always know how/when to tell people about Ab-SD.
The thing about my SD is, it’s not always super noticeable. As a result, if I’m not having regular (verbal) conversations with you, particularly in quiet settings (where it’s often worse), you may not have noticed it. And, if I think you haven’t noticed it, I probably haven’t told you. Getting the disorder in my young adulthood, rather than being born with it, has its own unique set of questions and such, and I don’t want to necessarily let having Ab-SD become a defining part of my identity. Therefore, “To tell or not to tell?” often remains.

And, unlike a more obvious health “difference,” like a cast on a broken arm or hearing aid for a deaf ear, SD doesn’t have a visual clue. And, because certain words are easier for me to say, without having major vocal chord spasms, than others, my brain has kinda re-programmed itself to be my personal mobile thesaurus, subbing in easier-to-say words for the ones that’d come most naturally to me but cause spasms. SO, you may not notice, but I usually do. My mind is busy with it’s new thesaurus business and I sometimes try to appear as if I’m unsure or lost in thought as a stalling method while retrieving the alternate word.

All that to say, SD is still new to me, and I’m still learning how to communicate and avoid any misunderstanding.
Listen, don’t fix.
This is one I write with a grimace. Because I’ve been that person. And probably still accidentally will be again. The one who hasn’t experienced the fill-in-the-blank hardship you’re going through but wants to make it better. And, with good intentions, I minimize what you’re going through.

If you don’t know what I’m going through, you don’t have to say, “I totally get it,” or “I know exactly how you feel.” Because, honestly, you don’t. If you have allergies…those seem to be really rough, annoying, and sometimes debilitating, BUT, allergies and SD are just two different avocados, so I (and my blessed lack of allergies) can’t truly relate to you, and vice versa. And, in my unrelatability, I need to learn how to express sympathy and empathy without saying I’ve gone through what you’ve gone through, when I haven’t. Comforting someone doesn’t mean having to know exactly what they’re experiencing. Jesus does. Leave that to Him. You can just be with them, listen to them, and encourage them.

I was at a party last night and had the honor of talking with a family who illustrated this beautifully. They inspired me to be more like them. When I told them about my SD, they just genuinely listened. And they said, “I’m sorry.” And when I tried to minimize it, saying it wasn’t as bad as fill-in-the-blank, they actually stopped me. They reminded me that this is a part of my story, and that, frankly, it’s one of the hardest things I’ve gone through so far. Basically, we’re all gonna have our “thing”, so let’s just be Jesus to each other.

Each person has their own story. Our job, particularly as disciples of Christ, is to listen and love.

Also, I hesitate to include this, but careful listening/hearing is so helpful when I’m communicating with you. If you heard me the first time, or figured out what I said after thinking for a sec, that just takes a load off of me. I know that’s not exactly the easiest thing to ask, which is why I barely added this part, but because this is about me being real and trying to bring awareness for this SD community, I’m including it anyway. I can’t expect everyone (for sure incl. myself) to have perfect hearing, but I do want you to know that a carefully listening ear is a blessingggg.

Note: I’m not asking you to pretend you understood me when you actually had no idea what I said. Ask me again–it’s ok 🙂 (Also, how many times have I done this? In the last week? A.LOT. #hypocrisyisathing)
Spasms are fairly unpredictable.
Thus, we could be talking, and I’ve decided to revert to whispering to ease my tightened/stressed stomach from the affects of the spasming or to just not talk altogether. And yet, the next moment, my talking could be nearly perfect. I’m not trying to gyp you out of a quality conversation…that’s just how it goes sometimes, and I wish I could totally explain that.

In my experience with SD, loud settings where I’m one of many sounds/voices tends to relieve the spasms and allow me to talk more comfortably. On the other hand, if we’re having a one-on-one in a quiet house, I’m probably struggling more. As a result, I’m extra into having music (classical/Christian/etc.) on in the background of quiet locations to help ease any anticipated spasms and resulting chest/stomach uncomfortableness.

If you have SD, I’d love to hear if you’ve experienced something similar.
I want to talk to you.
Know that, if I’m quiet around you, there’s a pretty good chance I want to/feel like I should be talking to you, but, to protect my stomach and chest from very uncomfortable and unhealthy-feeling pain that comes from pushing through vocal spasms, I’m not talking. But that doesn’t mean I don’t want to listen to you and nod along! I just may not be giving you verbal reactions to your story (i.e: “Mmm” “Wow” “Huh”), because nodding is SO much easier, but there’s a pretty good chance I’m up for listening if you’re up for my nods. 🙂
I’m still learning.
Like I said, I’ve had Ab-SD for about 2 years. Since my initial SD post, I’ve been blessed to connect with other SD-ers who’ve had it far longer than me. (See below for quotes from them.)
I’m new to this, I’m still figuring out how to operate with it, and I’m still learning about it. If you know about it, teach me! 🙂
Pray for healing!
As I said in my initial post, SD doesn’t have a permanent medical cure. However, I 100% believe God can completely heal me of the SD, if He chooses. He may not, and, if that’s the case, I know it’s for my good and for His glory. (Romans 8:28)
But, please still pray for a miracle! I’ve seen and experienced them before, and I believe God is QUITE capable of pulling off another one.
It’s changed my life.
I don’t think I’m the same today as I was three years ago. And we could all say that. And that’s, in general, a good thing. As humans, we’re meant to grow. As children of God, too, we’re given the opportunity to experience life to the fullest. (John 10:10)
But, because of the sin in this fallen world, sometimes that means we experience really crappy stuff. And the devil wants to use that to break us. But God wants to use that to make us stronger.

As a wise Bible study friend once said, experiencing the valley makes the mountain so much better. And so, we secure our armor of God (Ephesians 6) on a little tighter in the “valley” seasons and keep on fighting the good fight, all for God’s glory, trusting that we’ll be at the top of the mountain in His perfect timing.

Not only that, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.

Romans 5:3-4

Yes, this season is hard for me. But I also see glimmers of hope around me. I know (and am continuing to “learn”) my God. I’ve seen His power. If we’re created in His image, then the people around me have shown me a little taste of the massive, unmatched beauty, intelligence, and wonder of my God.

I am in His hands. The hands that are fully capable of working a miracle and defeating this neurological disorder, in the Name of the resurrected Jesus. (Mark 16)

I miss acting. A lot. But I trust God more. And, when that’s hard to say with confidence, then I want to trust God more.

Ultimately, I’m here for Him. What He wants me to do, He can do through me, with His strength.
Because…

God doesn’t call the equipped — he equips the called.*

I’m planning a separate post about the many things I have to be grateful for with SD, namely the INCREDIBLE community God has put in my life–PARENTS, dear friends, home group loves, and more, I’m looking at you.

For now, thank you, thank you, thank you.

I want to end this with BONUS responses from a couple of SD-ers I’ve been blessed to connect with since my last SD post:

Heather shared: ‘”It’s always best to not make a general assumption that we are “sick” or contagious. It ISN’T always appropriate to comment on someone’s health or to suggest people “feel better” or “take care of themselves.”‘

Milad shared: “Sometimes I get very sad about having SD, but still I have got many valuable achievments in my life. It is true that I cannot speak properly and my voice is different from others, but still I can teach people a lot…I can speak English, German, Persian, and Arabic, but only with my unique voice.”

If you have SD, want do you want the world to know? Comment below!

*Author may be Rick Yancey, but sources were unsure

UPDATE: I have abductor spasmodic dysphonia (whattheheck is that?)

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.

. . .

The Basics:

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.

A Cure?
Medically: None.
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.

. . .

Zooming In:

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.

Be blessed!

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.