If the Affordable Care Act existed in 2004, I could've gone straight to the emergency room when I needed to. My coverage under the ACA would've likely included Cedars Sinai, a top hospital in the area. There's a solid chance my injuries would've been discovered within hours. I could have avoided losing my job and my apartment.
But it didn't exist then. So here's how it all went down.
I hear Daniella scream. "I'm sorry," I whisper over and over to my roommate, as I shield my eyes from the mid-day sunshine streaming through the windows of our West Hollywood apartment. I always apologize. It's embarrassing to pee your pants as an adult.
I have epilepsy, and I experience generalized tonic-clonic seizures. They used to be referred to as grand mal (which, in French, translates to "great illness") seizures. But I guess they decided that was too sexy-sounding.
I was fifteen when I had my first one. I was at a sleepover at my best friend Krystal's house. We stayed up late watching a Friday the 13th marathon on cable and sneaking hits of pot from her older sister's stash. While walking through the sleeping house at 4 am, I fell to the floor. I opened my eyes to Krystal screaming my name, and her father's terrified face.
My seizures follow a typical pattern. I am overcome with a swift and intense wave of nausea and utter, "Um, I don't feel so good." Within seconds I lose consciousness. I crumple to the floor and convulse, my jaw clenched, limbs flailing. My face turns blue, and I appear to stop breathing. And yes, I pee my pants.
The origin of my epilepsy is a mystery, which according to Joseph Sirvin, professor of neurology and chairman of the department of neurology at the Mayo Clinic, is not unusual. "We know in about 50 percent of the cases there is no perfect cause," Sirvin says.
Ever since my first seizure as a teenager, I've soiled the plush carpet in a towering estate in Beverly Hills, I've seized on a snowy hillside of a quaint German city, and even executed a not so graceful dismount off a Stairmaster in a run down gym in Akron, Ohio. These are just a few of my greatest hits. Hits that were followed by me resisting a trip to the ER, would have bled my wallet dry.
One seizure stands out, though, for the havoc it wreaked on my life. It was 2004. Imagine a warm spring evening—the scent of Jasmine and desperation hang in the air. Daniella and I sip cheap Chardonnay with the porch door of our apartment propped open. We lean on our washer and dryer passing a Marlboro Light back and forth. A wave of nausea grips me. "Um, I don't feel so good," is the last thing I remember before plunging into darkness.
When I'm finally able to sit up, Daniella informs me she is taking me to the ER.
"No, no, no. I'm okay," I insist.
"You hit your head on the dryer and the floor. Hard. You turned blue. You need to see a doctor."
I had no health insurance. Health insurance was a luxury I couldn't afford, like major car repairs and an overdue root canal. But now I needed to see a doctor. I found a "cheap" plan—an HMO—and used my credit card to sign up.
My assigned neurologist took a detailed history, ordered an EEG, and an MRI of my brain. My MRI and EEG results were normal, which the neurologist explained was "not unusual in a person with epilepsy." This was also the moment I learned I was a "person with epilepsy." Sirvin explains that epilepsy is defined as "more than one unprovoked seizure." I had ten under my belt. I began taking an anti-seizure medication called Topamax.
My seizures were under control, but my life began to crumble. The crushing pain in my head, neck, and shoulders made daily activities like work, showering, and changing out of pajamas impossible. I spiraled into a dark depression. The HMO I was in meant I needed referrals from my primary care physician to see other doctors. And her brilliant opinion was that my issues were "all in my head." I didn't have the option of shopping for a doctor with a clue.
In my quest to find out what was actually wrong, I was told I had clinical depression, chronic fatigue syndrome, fibromyalgia, TMJ, migraines, a gluten allergy, and cluster headaches. I began to conjecture myself, since all this diagnosis were being thrown around. I was probably suffering from an acute case of massive credit card debt.
I made an appointment with yet another pain specialist. He pored over X-rays taken after one of my seizures. "You have two herniated disks in your neck," he said. I cried, but not because I was sad. It was rage.
I spent a year and a half in excruciating pain convinced that I was crazy, and even contemplated suicide. I maxed out my credit cards due to shoddy insurance that didn't cover the doctors I needed to see. The medical system chewed me up and spit me out. Overwhelmed with medical bills, I filed for bankruptcy. It's a feeling I thought others could avoid, especially since I watched the vote to repeal Obamacare fail last week. But it looks like Trump may bring my nightmare into so many others' reality.
The GOP's continued efforts to "snuff out" Obamacare don't just affect me, some random white lady who has an esoteric brain disorder. "The president has few options left at this point, but he does have power over one crucial part of the ACA marketplaces: payments covering cost-sharing discounts (or CSRs) that insurers must offer to the lowest-income customers," said Paige Winfield Cunningham in the Washington Post yesterday. "These payments are estimated to total $7 billion this year—making up about 15 percent of all federal subsidies on which marketplace plans are counting. Millions stand to have their health insurance pared down to its core—many will be one health crisis away from bankruptcy."
Watching rich white guys chip away at our healthcare—and potentially cause insurers to leave the market, leaving its members shit out of luck—makes me ashamed as an American. And as an adult who used to pee her pants on a regular basis, I'm pretty hard to embarrass.
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