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