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:

  1. 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.

  2. 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)

  3. 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.

  4. 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. 🙂

  5. 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! 🙂

  6. 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.

  7. 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 

Healthy Eats in NYC

Bryant Park, NYC

One of the many exciting things about big U.S. cities is their variety (& sheer amount) of cuisine.

And New York City is nick-named for being a giant fruit (*The Big Apple*), so it makes sense (with Quinnterested logic, anyway), for NYC to have a nice ole’ selection of healthy eats for us more limited folk.

With that, I bring you a sampling of some of my favorite NYC eateries! Enjoy!

 

  • Peacefood Cafe: Uptown (82nd St) & Downtown (11th St)

IMG_4867

My Peacefood Favs:

-GF Veggie Biscuit

It’s delightful. From what I remember of eating a whole gluten-y baked good, this is pretty darn close. Very comfortingly chewy–not dry like many GF things–and super well-seasoned!

GF biscuit

 

-Grasshopper Cookie Sandwich

I sort of can’t. It’s one of the best gluten-free, dairy-free desserts I’ve ever had.

Grasshopper cookie

 

-Chickpea Fries

They look like Jenga, so that’s just automatically a win, and they taste good, too. Plus they’re just so unique. Get ’em.

Chickpea fries

 

 

 

  • Hu Kitchen: 5th Ave. and 14th St

Hu Kitchen

This past trip was the first time I’d actual eaten a meal at Hu (rather than just salivate over their numerous unique snacks and baked goods.)

If you’re looking for a truly healthy meal to boost your system after
consuming all the–theater concessions? street food?–then Hu is the place for you. (#unintentionalrhymer…but also that could’ve been minimally planned)

My favorite part of the meal was (besides the restaurant aesthetic–see my artsy fartsy pic below, which some would *dare* call “blurry”) was the grain-free sweet potato bun, which was refreshingly filling without being heavily so. Does that make sense? It was like a “good” filling.

Picture of hamburger from Hu Kitchen with sweet potato fries

Picture of hamburger from Hu Kitchen with sweet potato fries

The whole meal just felt really good to eat, and it was also quite unique, which made it an important and worthy stop in my book.

Hu Kitchen
Aforementioned “artsy” pic

 

 

 

  • Bar Suzette (Chelsea Market): W 15th St (between 9th & 10th Ave)

Chelsea Market

My Bar Suzette Favs:

I regrettably (and embarrassingly) didn’t get any pics of the actual crepe I get when we go here (#bbm…bad blogger moment), but that doesn’t change the facts:

Bar Suzette has vegan/GF crepes made with lentils that are savory and slightly sour, and they pair well with a salty, fatty filling. Since they don’t have vegan cheese for a nice salty fat, I generally go with an egg, ham, and mayo or another condiment. They give it to you in a fan-looking wrap, which makes it super portable to eat while you walk the Highline (just a couple of blocks away).

One note: I’m not sure how seriously Bar Suzette takes cross-contamination, so if you have a severe allergy, I can’t say I’d recommend them as strongly (I believe they use the same crepe pans for GF and regular, and, at most, wipe it down in between.)

Anyway, if you’re more of a “you don’t have to change your gloves for me” type of sensitivity person and you’re looking for a solid eat-while-you-walk option in Chelsea Market, this is my recommendation.

 

 

 

  • Aunt Jake’s (Little Italy): Mulberry & Grand St.

Aunt Jake's

Wow, another #bbm…no pics of the actual pasta. To be fair, though, the last time I went was before Quinnterested was born, so *insert shrug emoji*.

Regardless, Aunt Jake’s was our Little Italy choice on this particular trip because we heard they had gluten-free pasta. (Always nice when you’re in a gluten-parading area like Little Italy)

What we also found out is that Aunt Jake’s doesn’t just have gluten-free pasta (not such a feat, honestly.) They have homemade gluten-free pasta.
*Interest level and appetite goes from 3 to 17*

So, if you’re currently wandering around Little Italy desperately looking for a way to gluten-free-ly partake in carb-topia, head to Aunt Jake’s and enjoy the extra-special treat of eating pasta that was made by hand.

 

 

And, while you’re in Little Italy, I think I’d be remiss if I didn’t include Erin McKenna’s Bakery as a round-the-corner dessert stop.

Everything is gluten-free and dairy-free, which is just YAY. While it isn’t my most favorite gluten-free bakery in the world (the fact that that means there are other options is just almost too much for my lil’ GF soul to take…thank You, God!), it’s magical nonetheless and worth a stop if you’ve never been.

 

 

  • Erin McKenna’s Bakery (Little Italy/Chinatown-area, with additional locations in L.A. and Orlando): Broome St (between Orchard and Ludlow)

IMG_1328

I generally go for the cookie sandwich…

IMG_6124

 

…or maybe a cupcake.

Cupcake

Fun times.

IMG_1322

IMG_1326

Erin McKenna's
This was actually taken at the Orlando location, so some flavors may be only regionally available
Erin McKenna's
This was actually taken at the Orlando location, so some flavors may be only regionally available
Erin McKenna's
This was actually taken at the Orlando location, so some flavors may be only regionally available

 

 

. . .

 

And that concludes our (first) NYC GF culinary tour!

Honestly, there’s so much more, and so much that I have yet to try, but hopefully this will prepare you enough for your next trip 🙂

Have fun!

 

 

Soli deo gloria!

“It’s better heated up!”

IMG_6200

If I had $5 for every time my mom has passionately interrupted my caveman-like focus on eating a cold chicken nugget after work–“It’s better warmed up” spoken with a passive-aggressive smile, through clenched teeth, as she nudges past me to the fridge–and I’ve rolled my eyes or groaned in response…

…I’d be quite rich.

giphy

 

I was thinking about that today, as I journaled about my future husband.
(If PSLs–that’s pumpkin spice lattes to non-millennials–with UGGs and scarves are the epitome of a basic white girl, then journaling about your future husband, adding in an ankle-length skirt for good measure–is the epitome of a basic Christian homeschooler girl.)

I’ve entered that season where pretty much every peer I know is either engaged or married (I’m exaggerating, but sometimes it does feel that way).

It’s great for them, and I hope their marriages are truly blessed! But it’s also like, “Hey, I’m just sitting on this bean bag chair eating peanut butter pretzels and listening to Single Ladies…just put a RING ON IT,” too.

I might feel ready. And I might see a guy who might not meet the necessary standards (for me, loving and following Jesus) but has a couple really cool qualities, and I might feel tempted to settle. But it’s like God’s standing next to me, holding open the microwave door, shaking His head at my settling-ness. He knows just how much better the man He has for me is (but not that He doesn’t love the one I might consider settling for), so watching me give little pieces of my heart away to others is just sad. (A little eye-roll-y, too, I bet.)

Every time I let my desire for marriage get to a point where I’m emotionally giving away those little heart chunks to guys who just don’t need it, that’s one less whole part of me that I’m offering to my future man.

Pause. There’s a whole message about saving yourself for your spouse in here that I’m not really going to hit on today. Just know that, as Christians, we serve a God of grace and truth, who loves us more than anyone. If you’ve done things–or things have been done to you (and there’s a world of difference there)–that you feel make you less “whole” or less worthy, just know that God doesn’t love you any less for that, and you are no less of a person. Just begin again, confessing to Him (if needed–see “world of difference” above), covered in His grace, today.

 

This floated around Facebook a while back. Think what you will about the physical depiction of Jesus…it still impacted me.

jesus-teddy-bear-675x381.jpg

I thought about how, the more I’m like, “Okay, God! Go ahead and bring that man to me now, por favor,” and then I feel my heart start to settle for someone who doesn’t hit the main future hub goal, the more I miss the better gift God has for me. And, to clarify, sometimes that “better gift” doesn’t look like something that I think I want or even need. But, news flash, God knows and loves us better than we do ourselves, and I’m incredibly thankful for that.

Also, waiting (not just romantically; in so many aspects of life) is a gift: waiting on the reply, the post-graduation job, the [insert your scenario here]. It totally doesn’t feel that way sometimes, but, hey, we’re learning to embrace and learn from it, aren’t we?

 

So, back to the metaphor-type thing from before.

Those cold chicken nuggets are edible, yes. (This metaphor is kinda eww now.)

But, when I wait 20 seconds for the microwave to heat them up, they’re loads better. (My mom is screaming in victory.)

My okay-ness with settling for the lesser nugget is laughable and not a little embarrassing. Thankfully, someone who lived a LOTTA years before me struggled with that first.

Back in Genesis 25, there were two brothers who knew a couple things about food.
One–Esau, the older–knew it would satisfy his outta-control hunger pains.
The other–Jacob, the younger–knew Esau’s hunger pains would overshadow the older’s common sense…or lack thereof? (But also, being hangry is a THING.)

The moment Esau got home from a hard day’s work, he wanted sustenance PRONTO.

And, in that moment, Jacob wanted a really big thing from Esau, but he figured he probably couldn’t get it unless he outsmarted (and majorly manipulated) his older brother.

SO, Chef Jacob made some “red stew” (sounds tempting, amiright? I’m guessing the author of Genesis 25 wasn’t a menu-writer…but I’m just spit-balling here), knowing that Esau would be SO stinkin’ hungry that he’d do anything to get that stew.

Honestly, this story is so dramatic. But, like I said, hangry-ness is real. You thought that was a 21st century term. Oh, no–it’s pretty much biblical.

What happen next? Jacob asks Esau for the thing–Esau’s birthright–and Esau (did I mention drama?) says, “Look, I am about to die. What good is the birthright to me?”

So Esau gives Jacob his birthright in exchange for the ole stew.

 

Once again, this is kind of an “Ew” metaphor, but my thing is, I’ve been convicted to put a better guard on my heart for my future dude. Those chicken nuggets just shouldn’t be the satisfier of my hunger when I’m seconds away from making them exponentially more tasty. (Still ew, I know.)

 

I’m not sure how to end this, so I’ll just do so in the very most cheesiest way, just for funsies.

Wait for your nugget. He’s better warm.

 

(I’m dying)
laughing

 

 

Some good nuggets (oh, nuggets of truth *cringe*):

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
Galatians 6:9

…we know that suffering produces perseverance; perseverance, character; and character, hope.
Romans 5:2-4

Be joyful in hope, patient in affliction, faithful in prayer.
Romans 12:12

 

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
-Ephesians 3:20-21

 

 

Happy waiting!

*Cue simultaneous playing of “We’re All in this Together” and “Single Ladies”*

 

Alive on Purpose

Little girl walking expressively

This can go two ways.

 

The first way:

If you’re breathing today, you’re alive on purpose. Not of your own accord, but because of the Creator of the world who’s put breath in y-o-u.

V. cool.

His timing is perfect, He loves you, and you’re not a mistake. Trust the God who made you.
(In all seriousness, that’s much easier said than done most of the time, and I’m not trying to belittle tough circumstances. Just sharing reminders of truth in the midst.)

 

The second way:

My relationship with Ecclesiastes (relationship’s a strong word for a book I read ~once/a few times a year) is…interesting. There are some parts, like the one below, where I’m like, “Yes yes yes yes.

There are other parts where an eye roll doesn’t quite do it.

In heaven, if people are recognizable, Solomon (author o’ Ecclesiastes) may not be the first author whose book signing line I’m in.

Gif of Gene Wilder

BUT. Read the below verse, and then we’ll chat.

So I commend the enjoyment of life, because nothing is better for a man under the sun than to eat and drink and be glad. Then joy will accompany him in his work all the days of the life God has given him under the sun.

Ecclesiastes 8:15

This may not be the greatest pre-game inspirational speech by any means.

But, when I’m feeling defeated about “not doing enough,” or I’m nearing graduation and if I get asked one more, “So what do you want to do with your life,” I’ll possibly sneeze viciously on them (what?), verse 15 kind of throws a strong hand out in front of me, guarding me from running through life too fast or too stressed.

 

When was the last time you ate and drank with someone, no phone in arm’s reach, no “Only five more minutes until this is overrrrr“?

 

For me, the answer would be, not nearly enough.

 

However, there was a recent night where a few very dear friends and I took a low-quality pic of a fun and food-filled evening that was so, so needed.

It was us simply meeting up, shopping for food that we’re blessed to be able to splurge on for spontaneous occasions like this, and rejoicing in quality time with quality food.
(Food–specifically food that I can eat–is one of my love languages, I’ve decided.)

Friends posing with food

I’m thankful to have friends that go on spontaneous Sprouts runs for an exorbitant amount of “healthy” junk food with me. I think that’s a gift from our good Giver of perfect gifts. (James 1:17)

 

 

If we’re alive on purpose, then let’s live on purpose.

Joy is too precious a gift to miss, to not fully embrace.

 

I need this reminder. If you do, too, then yay! If not, share it with someone who does. Life is too sacred not to.

 

Go live! Jesus loves us!

Karissa Wheeler Check-In: Dream Big pt 2

Karissa Wheeler

Hi friends!

 

Do you remember my friend Karissa Wheeler? We got to hear from her experience being a Christian and an actress who was moving in NYC in Dream Big: A Chat w/ Karissa Wheeler.

 

Well, she’s awesome.

 

And now she’s living in NYC and doing that acting thing. And I’m so proud of her!

 

Let’s check back in with her to see how her 1-month acting conservatory at Michael Howard Studios went!

 

. . .

 

 

 

Quinnterested: How long have you been in NYC now?

Karissa: 3 months!

 

 

 

Quinnterested: Tell us about your acting school experience!

Karissa: It was INCREDIBLE!!! I really can’t even put into words how transformative the experience was. It pushed me mentally, physically, artistically and emotionally in all of the best ways. I was able to make lifelong friends as well, which was a cherry on top of the sundae.

 

 

Quinnterested: What did a typical weekday look like for you, while you were in the conservatory?

Karissa: I would wake up at 7am to get to the subway station with my friend Connie by 8:10am and then make it to the studio by 9.
We had three classes a day of everything from improv to clown to animal to Meisner to Alexander…all technique focused. It was really all-encompassing and concentrated at the same time. Incredible training and fantastic instructors.

 

 

Quinnterested: That’s so cool! Now that you’ve graduated from Michael Howard, why are you staying in NYC?

Karissa: I really feel like the Lord has called me here. I am ultimately just being obedient to what I feel like He’s telling me to do at this time in my life.

 

 

Quinnterested: Love it. Ok, how do you balance being in such a busy, wild city with maintaining decompression time for God and yourself?

Karissa: I’m still in the learning process honestly. I’ve surrounded myself with faith-based relationships, so that’s been a huge source of encouragement to stay rooted in the Word. My new church home is FANTASTIC! Worshipping and the teachings on Sundays have gotten me through the past two months. I’m still going through the Annie Downs devotional “100 Days to Brave” which has been encouraging as well. OH! AND THE DAILY BIBLE READING I’m doing with you!

 

Quinnterested: Yes! If anyone wants to join us in the daily Bible reading, check out the “Read Through the Bible” plan on YouVersion!

 

 

Quinnterested: Now that you’re living in NYC, how do you make friends/build community?

Karissa: I was really blessed to have a community through the studio, but outside of that, I have a really good friend, Allie (also from Nashville), who has been the biggest blessing throughout this season! She and I got plugged into an awesome church which has made Sundays our absolute most favorite days. Aside from that, I’ve moved in with some incredible roommates who have taken me in under their wings and showed me so much love. I’m super grateful!

 

 

Quinnterested: If/when you have bad days, what do those look like, and what gets you through them?

Karissa: This last week was really difficult. I was coming out of conservatory and didn’t really have a strict schedule throughout the day, so I really had to turn to my community–my family, friends and mentors. I probably called like 5 or 6 of my mentors and kind of word-vomited my feelings. They were all so gracious and supportive, as were my friends and family. My friend Suxin actually drove into the City to have dinner with me which was super needed–definitely a God thing!

 

 

Quinnterested: What advice would you give to someone who’s just getting to the city to pursue acting, like you were three months ago?

 Karissa: Just do it…get up, go to the audition, go to the class, meet the people. There will be really hard days…and really good days, but you just have to remember why you’re doing what you’re doing. Keep a vision of your purpose and your end goals in mind. Remember your why.

 

 

 

 

 

 

I hope you’re inspired by this sweet friend’s step of faith! I know I am.

 

I’m thankful to know and be encouraged by you, Karissa!

 

 

Hey guys, show Karissa some love and encouragement today!

You can find Karissa on Instagram:@karissawheeler16

You never know how God can use you sharing a Bible verse or a “You and God got this!” message!
What next step will you take to pursue your dream?

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.

Healthy Eats in Nashville, Part III

Vegan Vee

There are a lotta fab things about Nashville.

One of them is the amount of gluten and dairy-free food that’s becoming more broadly available.

It’s a joy.

Food: 1
Sad things: 0

(What? I don’t know…it’s been a long day, so you’re just going to have to ride the Quinnterested-Brain-Train with me.)

 

Here’s one of my new Nashville favs:

  • Vegan Vee Bakery: West Nashville
    Vegan VeeVV was on my summer bucket list to try.

    Well, *smiling smugly* try it I did. (#feeltheYoda)

My Vegan Vee Favorite:

-Jam Filled Donut Muffin (just let those words, combined into ONE dessert, sink in for a sec)

Jelly-filled gluten-free donuts are, well, in short supply.

The remedy: Stock up at Vegan Vee.
Vegan Vee

 

 

 

  • Koko’s Skoop Shop: West Nashville (pair with your trip to Vegan Vee, which is less than 2 miles from Koko’s!)

Ice cream with a cone on top

Koko’s menu isn’t available online (yet), but we really enjoyed the fact that all of their ice cream is dairy-free, in addition to being nut & peanut-free and plant-based! And the gluten-free waffle cone was a mega-added-bonus.

It’s also just a really cute (dare I say “aesthetic”) location, right by a sand volleyball court, so bring your friends and work off that ice cream!

 

 

So go have a cute lil’ trip to West Nashville, eat some *actually healthy* ice cream, a jelly filled donut muffin (becausewhereELSE?), tour Vanderbilt or something smart like that, jaunt around music row real fast, and then go grab some din-din in the Gulch (Burger Republic is really good and has GF buns!)