Healing From Head Trauma: How ACA Saved My Life

Possibly the last time I'll ever be on the aerial cube

Possibly the last time I'll ever be on the aerial cube

My name is Sophia Chang and I was an aerial acrobat until a traumatic brain injury ended my career, took my motor functions, and made me blind for months.

It began last fall with a neurological tremor and undiagnosed vertigo. By the time the vomiting began, I had already spent months with daily nausea so severe I developed gastritis from being unable to eat. I dropped to my Hollywood weight: a few pounds over 100.

WELCOME TO HELL

For months I couldn't walk. In the early days, my helper had to lower me onto the toilet, gently unlacing my pajama drawstring and averting his eyes. He never once wrinkled his nose. 

When I finally could venture out at a shuffle, clutching someone's arm tremulously, I was never without extra-strength ear plugs, because anything over soft whispers triggered my dizziness. To this day, I can’t sit in bright light (sun or artificial) without wearing sunglasses and a large hat.

This is what a head injury purse looks like:

  • ice pack wrapped in a T-shirt
  • two ziploc bags of medication (one labeled prescription in red marker to prevent overdose, the other OTC and safer) 
  • Biofreeze (in case ice pack melts)
  • lip balm
  • rollerball of digestion essential oil 
  • two scrunchies to keep neck cool
  • 2-4 hair clips clipped to the purse handles
  • cherry Cola Tic-Tacs (tip from an 11-year-old to help with anxiety)
  • iphone unlocked so someone can call for help if I collapse
  • two kinds of earplugs
  • wallet (friends verified I was paying with a credit card and not my Metro card)

Whoever escorted me had to carry this 800-pound bag of rocks since I couldn't so much as lift my own head.

OH WAIT. THERE ARE MORE RINGS TO THIS HELL. 

Then I lost my vision. First one eye, then both. It was a horrifying, helpless nightmare I could never wake from. 

I couldn't feed myself. Someone would put a dish in front of me and I would feel for each piece of chicken with bare hands. I felt humiliated and ashamed. 

The PPIs well-meaning doctors doled out for my gastritis resulted in even worse IBS and reflux. I woke screaming every night, doubled over with stomach cramps.

I begged God to kill me, to end this, don't let me wake anymore.

But I kept seeing the dawn.

So I knew I had to go on. There was something else He wanted to keep me here for, so now it was my responsibility to heal.

BUT FIRST, THE MAN TAKES ALL YOUR MONEY

I had to stop work as an English tutor and dance teacher. I didn't qualify for state disability because I'm a freelancer and federal disability is notoriously difficult to obtain (everyone gets rejected at least once, is the refrain). Bank of America charged me low balance fees for days, when I couldn’t read the statements, a salting in my wound for someone with an 800's credit score and impeccably on top of my finances under normal circumstances (I plan to switch to Chase, who hopefully won’t punish me for being blind.)

My ex gave me so much money to survive - including donating his work bonus, skipping most of the trips and events his friends invited him to, and canceling his own birthday party so that I could survive. My writer’s salary will never be enough in this lifetime to pay him back. 

"You'll pay me back when you get better," he said.

I cried and cried. Today, I work so hard on my healing, because his generosity and his sacrifice cannot be in vain.

AND THEN THERE'S HEALTHCARE

The two most frustrating parts of the recovery was not knowing what was wrong for so long and then not knowing how long I had health insurance. Like many head and neck injuries, the full symptoms don't kick in right away, and for so long no one could trace my failing body to my fall from the aerial cube.

I sought every specialist I could, from endocrine to optic nerve. Finding someone under my insurance who would see me within 5 months has been a nightmare that left me feeling uncared for and alone. After 11 months of recovery and counting, I have seen a grand total of ONE. I'm genuinely curious how bad off the other patients are if going blind doesn't warrant an appointment within this century.

At least I have health insurance. But it was a tenuous knowledge, at best.

Every week came news of ACA being snatched from us at any moment. I felt huge pressure to recover before I lost the means to. I prayed constantly and tried everything a health professional recommended - from medication to acupuncture to cutting out gluten - if it meant I could get my life back.

THE ROAD BACK FROM HELL

My nearly year-long recovery has been as smooth as an exorcism. For the first six months, I cursed at a Tourettes level and cried until I burst blood vessels. I hated every second of the pain, and I was pretty sure God hated me too, and especially me.

But I also sang when I could. Worship songs. Katy Perry songs. 

I signed up for Audible and I'm listening my way through the entire Jack Reacher series and a women’s bible study.

At long last, I received my first key to healing this year through a neurological physical therapist I like to call, The Messiah of PT.

The first day I could walk by myself again, I thought I had gone to heaven. Soon after, my ex said, "Hey! You just read that word!"

One eye was coming back.

HOW ACA SAVED MY LIFE

The year is almost over. I just choreographed my first wedding client since my injury. I had to sit down a lot during our lessons. The young couple were kind and understanding - and they performed the steps I gave them beautifully.

My vision hasn’t fully returned yet and I’m still light sensitive.

The last few months have been terrifying. Fear stole my breath when I saw the report from my alma mater that 44,000 people will die every year, beginning immediately, without affordable health care.

My options, which I've been weighing since Election Day 2016, are slim. I can't move to Canada and get a job in time. I can't suddenly switch to Taiwanese citizenship in time. And anyway, I wouldn't want to.

I'm an American. I live here. And I want to keep being alive here. I want to work fully again, and pay way too much in taxes again. I want to see again.

Some days I dance in the kitchen while I rinse the dishes. Other days I’m so nauseous I can’t sleep through the night.

Every day, I prayed. Please turn the hard hearts that don’t seem to care about people like me. I am very much in need.

Today is October 1st. The GOP repeal is officially over - so they say. I'm still cautious, a Handmaid tentatively walking into 2018, asking every step of the way, "Is it true? I'm allowed to live next year?"

I still can't believe it. But it seems, in the end, good triumphs over evil. And no matter how much the old, white men of the government want us to go away, it seems a higher power wants us to stay.. 

Thank you, God, for letting me live.

Thanks for reading about my year in hell. If it moved you, please click Share below!

Best of 2016: Sophia in Review

The last 4 months were some of the worst in my entire life and I have never been so happy to say welcome a new year!

2016 was a 9 year, which completes a 9-year-cycle (of horrific pain, apparently) that signifies endings, letting go, and forgiveness. 2017 is a 1 year and I'm already ecstatic!

Despite the utter hell, there are still amazing moments in 2016 to honor:

SOPHIA'S SUPERLATIVES: 2016 IN REVIEW

1) BEST Moment of 2016:

I usually celebrate my birthday for a week, but I crammed all four parties (including a baptism!) into 2.5 days. It took me about a week to recover. WORTH IT.

Here's 80% the footage from the weekend crammed into less than 4 minutes. Watch for the gift of a lifetime - something unicorns use to poop rainbows...

 

2)Best New Project 2016: Griot good

Lee-Sean Huang has been collaborating with me to use our Harvard degrees to completely ruin the Asian American reputation for more years than we would like to divulge. 

This year we filmed an Asian fusion cooking show called Griot Good, where we coordinate our outfits to the theme and cuisine.

I hope my dad is glad he pushed me so hard.

3) BEST WRITING FROM 2016:

Apparently people love when I share how unbearably painful my life is in gory detail, so here you go - Sophia's latest piece on the endless regrets that make up my life! Click the photo

4) Best Trip in 2016:

I spent an amazing week in Philadelphia before my annual trip home to NYC, and Nick Lachey even made my pizza:

Full post from Facebook:

Most of you know that SYTYCD was instrumental in my becoming a pro dancer way back in my Hollywood years. What I haven't mentioned is that the Sing-Off is what inspired me to finally audition for an a capella group, which took me around SoCal performing for awesome events. (see celebrities HERE)

Last night in Philly I got to tell Nick Lachey what that show inspired me to do and he thought it was super cool.

5) single Best Thing About 2016:

Becoming a Christian. Two weeks ago I celebrated my one year (re)birthday in Christ. My life has changed irrevocably - I've healed in ways I haven't been able to for 3 decades, and I broke a dating addiction I've had for over twenty years (articles on those coming soon).

I also started a personal blog and some of my best articles are there about my spiritual and relationship lessons from my (painful) life. Visit FiftyTwoFaces

6) honorable header mention - COSPLAY OF 2016:

The mysterious redhead in the lower header photo is me performing live band karaoke at the Hard Rock Cafe as Black Widow. <--yes there is a video

 
Captain Asian America, Yellow Widow, and Spider Pinoy at the MARVEL Avengers premiere. I rode the gold line like this and nobody batted an eye.

Captain Asian America, Yellow Widow, and Spider Pinoy at the MARVEL Avengers premiere. I rode the gold line like this and nobody batted an eye.

 

Like the vids on this post? Click Like and Share below:

3 Things I Can't Wait to Do When My Toe Heals

Ah, injury. The marker of a dancer's life more common than they show.

Punched in the throat by a metal bar

Punched in the throat by a metal bar

A month ago I had my first aerial fall - off my beloved cube, hitting my throat on a metal bar on the way down. I had whiplash and some concussive symptoms.

2 days later, I went in for my Level 2 Pole Teacher Training, because I'M SHE-HULK.

I taught from the ground, and my master trainer said I was made to teach and that any studio would be lucky to have me. It was heart-filling to hear that.

Snapchat: making injuries glamorous

Snapchat: making injuries glamorous

Just when I recovered enough to get back on aerial, I went to a nail salon to get an ingrown toenail removed. Using rudimentary tools and no anesthetic, they butchered my nail bed in a procedure that made me feel like I was in a third-world country and my passport had been stolen. 

It was infected within the hour.

After a week of antibiotics, my doctor properly removed part of the toenail and the horrifyingly large ingrown section. Though I'm limping again, the nightmare is finally over.

Here are the 3 things I'm most looking forward to doing when the gaping wound on my toe closes:

  1. Hip-hop! I finally went back to a Beyonce-video style class involving lots of shade and requiring knee pads before my toenail's dignity was taken away.
  2. Getting into that gorgeous poolIt's summer. We're having a heat wave. I should have been LIVING in that pool, instead of staring resentfully at it from the concrete.
  3. Blues/Fusion Dancing. I can't remember the last time I had a full-body hug. #churchpeopleproblems

Asian Pacific American Bachelor 2016: Daryl Iijima

My favorite feature of the year is here! This month's search for APA Month 2016's Bachelor of the Year took a little longer than any of the previous years - and it's worth it! 

Daryl is 4th generation JA so I had to Asian him up with bamboo and milk tea

Daryl is 4th generation JA so I had to Asian him up with bamboo and milk tea

Daryl serenades the ladies on his ukulele  

Daryl serenades the ladies on his ukulele

 

Daryl is an EDM DJ who combines his passions for music and his faith. And since I know you ladies appreciate a James Earl Jones basso like do, I have a special treat - APA Bachelor's first ever VIDEO interview!

Name:  Daryl Iijima
Age: 29
Height: 5'8"
Profession: Toy Licensing

Do you cry at movies: If it Hits Home

Boxers or Briefs: Boxers

Instant turn-on: Funny & Genuine Smile

Dealbreaker: Entitlement/Smoking

Karaoke song of choice: Rather Play the Uke/Sing or DJ :)

Boba flavor of choice: Brown Sugar Milk Tea

On a Friday night you'd prefer to: If it's a Long Week, I'll Rest at Home. Otherwise, I Enjoy a Great Food Adventure/Movie/Game/Show/Trip.

Last Friday you actually: Packed for my DC Trip.

Message to your future wife: I'm not the Biggest, Fastest, Strongest, or Smartest, but I will give you All of Me. All the Love, Care, & Respect that I Possess will be Yours. At the End of the Day, I Hope it's Enough.

BONUS QUESTION: If your entire life was an EDM track, which songs would be mashed in: Alesso & Swedish House Mafia - Pressure Remix VS Don't You Worry Child

Daryl's original mashup:

Is Daryl your man? Leave a comment below and I'll deliver him to you!

APA Month Charity Spotlight: The Animal Hope & Wellness Foundation

Marc Ching is not just a dad, husband, and powerful herbalist. He also flies to Asia repeatedly and physically carries dogs out of slaughterhouses into safety. Many die on the way to the emergency room.

It's hard for me to watch some of the videos, and they don't even show a fraction of what Marc sees when he rescues these dogs - but the videos have happy endings.

If you have even $3 to spare (I scraped that much in coins from the car), please DONATE - and if you have time or love, consider FOSTERING or volunteering.

And if you really don't have anything to spare, or are just a heartless person*, consider making them your charity of choice when you shop at Amazon. It's completely FREE and effortless for you! 

*Yep. I'm Asian guilting you because it's APA Month. #tigermom

Know any animal lovers? Please hit SHARE below and spread the mercy:

Filming Griot Good in Phoenix

© 2016 Lee-Sean Huang and Sophia Chang

© 2016 Lee-Sean Huang and Sophia Chang

#nomad2015 has concluded!

Introducing Griot Good

I spent the 13th and final month on the road in beautiful Arizona shooting the first season of my brand new cooking show with fellow storyteller Lee-Sean Huang.

Griots are West African traveling storytellers and musicians. LS and I have wandered the world eating and singing since our Harvard days (much longer than we care to remember) and now we're bringing you the goods in food culture!

© 2016 Sophia Chang

© 2016 Sophia Chang

There could not have been a better way to start 2016.

We cooked and ate until I had heartburn, did yoga, watched Melrose Place (the original) late into the night, hiked the stunning Sonoran desert in a desperate attempt to lose what we were gaining, and made mochi versions of everything.

Episode 1 is live now! We're dressing up in traditional Chinese wear and making Beer + Chocolate Short Ribs on a Spicy Slaw. It takes 100 subscribers to get us a personalized URL so we'd really appreciate if you subscribe to our Youtube!

 

We are @griotgood on all social media:

Instagram

Facebook

Youtube

Twitter

Website

JaNoWriMo and Other Exciting News

Happy 2016!

For 3 years I ran a highly interactive blog about Young Adult Fiction that I just LOVED called Sophia the Writer.

I hosted book giveaways and did 50% of the book blogger memes in the world, which meant I did about 8 million.

I'm happy to announce that I'm returning to my roots and refocusing on my novel writing this year.

Which means it's time for

JaNoWriMo!

That's right, NaNoWriMo in the month of January! 30 days to write every single day. You can choose to hit 50,000 words if you like, but JaNo has the flexibility of setting the simple goal:

Words on a page. Every day.

If you'd like to join, just comment below and let us know what you'll be WriMo-ing this month! If you want a word sprint partner, follow me on Twitter @thesophiachang where I'll be announcing (usually nightly) #wordsprints.

The Great Facebook Break

I started ramping down social media last fall and took a blessed Facebook fast at the end of the year. It was so peaceful it reminded me of the 90's.

As part of my refocus on YA fiction for 2016, I've begun separating out my personal Facebook profile for family and friends only. I'm now directing all business contacts to my business page. Since Facebook's algorithm is as reliable as a Tindr date, the best way to stay in contact with me is by subscribing to this blog - you'll also get my short cheatbook 3-Step Brand for free!

As a bonus challenge to joining JaNoWriMo with me - who's also going to have a Facebook purge or fast? Let me know below!

2015 Blog in Review

2015 blog in review (2).jpg

I've been blogging for 8 years (starting with a very pink, secret one on blogspot) and my favorite meme is to take the first line of the first post of every month to form a review. Just click the pink titles to read the full articles!

Sophia's #nomad2015 Blog Review

January - Happy 2015!

February - Happy Chinese New Year eve!

"Wishing the world an amazing Chinese New Year eve from Sun Moon Lake here in Taiwan."

March - Behind the Great Firewall

"China is the hardest leg of my world travel so far."

april - Fooling the Asians

"Someone asked me last week if I was Asian."

may - The View from Vegas

"One year ago I posted my article Measure Your Success By Lifestyle, Not Numbers."

June - San Diego County

"Food safety question: if you leave an omelette in a warm car for 4 hours is it still safe to eat?"

July - Sophia Battles the Ramen Burger (and crawls home sobbing)

"I'm supposed to be on a diet, which means I work out everyday and end up famished every night."

AUGUST - Bi-country Birthday

"It's my birthday! This is the first year I get to celebrate in two countries. I am full of gratitude for my beautiful friends and the adventure I'm on! XOXO"

september - Nomad Truths: Travel Weariness

"It's that time again. Travel weariness sets in."

october - Last 24 Hours in New York

"I took this photo leaning against the tiled wall of Penn Station, sitting on the speckled linoleum alongside hundreds of New Yorkers waiting for the track number of our train to Jersey to pop up on the screens."

november - The Real Sisterwives of the Citadel: Sophia on the Fury Road

"#nomad2015 has brought me on poles all over the world, but never did I expect it to bring me to the Thunderdome on the road to Valhalla!"

December 

I won't get too meta - it's this post.

Feel free to steal this meme - just link back to this post and let me know when it's up so I can see your year in review!

The Real Sisterwives of the Citadel: Sophia on the Fury Road

#nomad2015 has brought me on poles all over the world, but never did I expect it to bring me to the Thunderdome on the road to Valhalla!

The 5 Wives of Immortan Joe from Mad Max: Fury Road © 2015 Sophia Chang

The 5 Wives of Immortan Joe from Mad Max: Fury Road © 2015 Sophia Chang

Yeah. My Halloween was epic.

Saved by Mad Matt - The Road Courier © 2015 Sophia Chang

Saved by Mad Matt - The Road Courier © 2015 Sophia Chang

Coma the Doof Warrior © 2015 Sophia Chang

Coma the Doof Warrior © 2015 Sophia Chang