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.
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