Medical Mystery Tour
By Katherine Macfarlane
The left side of my face felt strange. I pinched my left cheek. My fingers could feel the skin I was pinching, but from cheekbone to jawline, the skin was numb. I tried to smile. The left side of my mouth moved, but more slowly than the right.
I was 32 years old. I was sitting at my desk. In front of me were case printouts, yellow tabs marking key passages on every other page, a half-eaten avocado sandwich, a Diet Coke, and an argument outline I was committing to memory. I was due in court in an hour to argue a motion.
I called my doctor’s office and said I was experiencing “facial numbness.” I was taking a medication that had, in some studies, caused patients to develop multiple sclerosis (MS). Though not a hereditary disease, across four generations on my mother’s side of the family, there were ten known cases. My uncle died of MS in his 40s. Doctors advised me to watch out for muscle weakness or numbness.
So when I couldn’t feel the left side of my face, I dutifully called my doctor. But the receptionist wouldn’t put the doctor on the phone.
Thirty minutes passed. I reluctantly decided I wouldn’t make it to court. I walked into my boss’s office, interrupting a meeting he was having with my co-worker Elissa.
“I’m so sorry to interrupt,” I said. Manners mattered.
“I’m not feeling well. I need to see my doctor.”
“Barry,” I said to my boss, “I have that hearing in front of Judge C. Can you call chambers and let them know?”
Barry nodded. He looked worried.
Barry was calm and kind. On weekends, he ran miles around the city. He took yearly trips to a cabin in the wilderness. He supervised an army of junior lawyers, gently tweaking our briefs and shaping our case strategies.
Elissa, my sweet, patient friend, said she’d go with to the doctor. “No, no. I’m ok . . . call Tom.” I was weak and didn’t want anyone but my husband to see me this way.
I let Elissa wait with me for a cab. We stood on the corner of Church and Park in downtown Manhattan, blocks from the rebuilt World Trade Center. A yellow cab pulled up. I gave directions to my doctor’s office. I fished my phone out of my purse and called the doctor again. The call went straight to voicemail. My hand trembled.
Why didn’t I go to a hospital? I don’t know. This didn’t seem serious enough given everything I’d been through in the past year.
I’d had two glaucoma surgeries on my left eye. The first one was meant to stabilize my intraocular pressure so I wouldn’t go blind. But post-surgery, my pressure was precipitously low, and my vision crashed. I was legally blind.
My perfectionist surgeon couldn’t accept that her procedure failed. She switched up my drops. She tightened some stitches and removed others. Recovery was supposed to take six weeks. Six months passed.
“You need to be patient,” she said.
A “corrective” surgery was scheduled. I was awake throughout, numbed only by eye drops for three and a half hours.
The second surgery worked. My pressure and vision stabilized.
But why was I having glaucoma surgery in my 30s?
Eh, long story. I was diagnosed with Rheumatoid Arthritis (RA) at 13 months. Most kids with RA have joint issues. Some, like me, have eye problems too.
RA causes joint swelling, deformation, and even organ failure. Its management requires a team of specialists, a mountain of medication, and meticulous bookkeeping to keep up with the piles of paperwork.
The RA drugs suppressed my immune system and made it very easy to get sick. How easy? I once got a staph infection in my left nostril. Which is almost funny.
My steroid eye drops caused cataracts. I had cataract surgery at 23, right before law school, and my second one at 27. Long-term use of steroid drops can also cause pressure problems and glaucoma. I’d been on steroid drops for most of my life.
At the time the left side of my face went numb, I was taking the oral steroid prednisone, the anti-inflammatory plaquenil, methotrexate, a chemotherapeutic drug that hurts your liver, and Remicade, which can trigger MS.
I was losing weight. I told my GP that my stomach hurt.
“Eat some yogurt,” she said.
I told my rheumatologist I was dizzy.
“Take some Mucinex. You’re just congested,” he said.
I told my shrink that managing all my doctor appointments was exhausting.
“Hmmmm,” was his response.
The day the left side of my face went numb, my cabbie took the Brooklyn Bridge out of Manhattan. I thought of the people who walked across the bridge for the first time. I loved how it towered over the water, majestic and solid, built for the ages, like the bridges that cross the Tiber in Rome, where I’d lived as a little girl. You could still hear Italian in Brooklyn, down on Court Street, where men in belted slacks smoked cigars outside their social clubs.
I was wearing a black business suit and patent leather heels. My hair was pinned into a tight French twist. I entered the doctor’s office suite and calmly announced that I was on Remicade and that my face was numb.
Next time, I’m just going to yell “Emergency!” and get on with it.
A nurse rushed to my side. My GP, who happened to work in the same office suite as my rheumatologist, took charge. My blood pressure was high. She agreed that the left side of my face was slack.
“Call an ambulance,” she told the nurse.
“You might be having a stroke, Katherine.”
I tried to breathe my way through it.
EMTs arrived. In the ambulance, they lifted me onto a stretcher, even though I told them I didn’t need to lie down.
We’re all accustomed to the sound of an ambulance siren getting louder and then quieter as the ambulance moves closer and then farther away. Inside an ambulance, the siren’s scream never softens; it stays loud in your ears. Which makes you realize that you are the emergency the siren is for.
We arrived at the Brooklyn Hospital ER. The EMTs abandoned me in a sea of stretchers, a crowd of patients waiting to be treated.
A doctor who looked like Dr. Susan Lewis from ER asked me what was wrong.
“I get infusions of Remicade to treat Rheumatoid Arthritis. The left side of my face is numb and MS is a side effect of Remicade. And . . . I had glaucoma surgery in my left eye.”
“You get infusions . . . in your eye?” she asked.
I sighed. I tried again.
“I get IV infusions in my arm. My face is numb and I’m worried this is MS. Or a stroke.”
“Is anything else numb?”
“My right arm is tingling.”
“STROKE PROTOCOL!” Not-Dr. Susan Lewis yelled.
Then she disappeared.
I did my deep breathing. I craned my neck to scope out my surroundings. Young people with bloodshot eyes were shaking and hugging themselves. But it wasn’t cold.
“I NEED XANAX!” yelled an old man in soiled clothing. He screamed for Xanax for hours. Every so often an exasperated doctor would tell him to shut up. Otherwise the ER staff pretended he wasn’t there.
I felt a gentle hand on my arm.
“I’m here.” Tom.
“What’s going on?” He ran his left hand through his hair, which he did when he was worried.
“Go find a doctor and tell the doctor your wife is having stroke symptoms.”
Tom got things moving.
I had blood tests and x-rays and a CT scan. A neurologist dragged a pen up and down the bottom of my feet and asked me to memorize four words and then repeat them back to him.
I was not having a stroke. But I couldn’t go home yet.
Seven hours passed before I was admitted and deposited into the hospital’s only empty bed, in the ICU. My neighbors were on respirators, recovering from operations. Some would never recover.
The doctor assigned to my floor, Dr. Sammie, would enter my room, pat his coat pockets, and discover each time that he’d left his stethoscope elsewhere. I reminded Dr. Sammie to wash his hands before touching me.
“Ok, you’re right, hah hah,” Dr. Sammie would say.
The morning after I was admitted, a neurologist stopped by.
“It may be MS. We’ll know as soon as the test results come back. You’ll know today,” he said.
It was Wednesday morning. I was desperate to leave.
The tests began. I was wheeled off to different departments by an orderly who’d leave me on a stretcher he’d push up against the wall of an empty hallway. Florescent lights flickered overhead.
I tried to imagine that it was summer and I was back in Michigan in my grandparents’ backyard. That the flashing lights were fireflies I’d chase after. The grass would feel cool beneath my bare feet.
No one should be left alone while waiting for tests that might reveal you’re dying.
I had MRIs with contrast, which means that a dye was injected into my blood before I entered the coffin-like MRI chamber. I had MRIs without contrast. Each MRI took forever. To pass the time, I mouthed the words to the only songs I could sing from beginning to end: La Isla Bonita, Cherish, and Right Here Waiting. I guessed that it took me about three minutes to get through each song. About ten songs per MRI.
I threw in the Lord’s Prayer and a few Hail Marys. What the heck.
The tests were over by late morning. Wednesday afternoon came and went. The nurses changed shifts at 5:00 p.m.
At 9:00 p.m. we asked a nurse to page the neurologist.
“He’s gone home,” she said.
“Then call him at home,” Tom insisted.
“He won’t be reading the tests today,” we were told, “he’ll read them first thing in the morning.”
We tried to sleep.
I woke up around 5 a.m. I thought I’d ducked MS because I had RA, but now I might have both. I imagined dying in a nursing home, just like my uncle.
My lips were cracked. My hair was greasy. I didn’t like how I smelled. I didn’t like how I felt.
The results didn’t matter, I told myself. I had to leave. I had to get out of there.
Dr. Sammie strolled in at 9:30 Thursday morning.
“You can go,” he said.
“What? You mean I don’t have MS?” I asked.
“You show no signs of MS,” he said.
“So what do I do now?”
“Follow up with your doctor,” said Dr. Sammie. And then he left.
Tom pushed me out of the hospital in a wheelchair. Outside, the numbness crept back into my face and arms.
Two months after the left side of my face went numb, I ran into one of my ER doctors at a dinner party. I was still shaky, but good at hiding it. The doctor recognized me, but didn’t ask how I was.
“What’s it like to practice medicine in a Brooklyn ER?” our host wanted to know.
“If they’re not dying, I’m not interested,” the ER doctor said.
People laughed. The air felt heavy.
I never figured out why the left side of my face went numb. It still happens. I still try to breathe through it. Maybe someday some doctor will care enough to investigate.
I’ll never go back to an ER, even though it could have been much worse. Strip me of my privilege, my assertiveness, my money, and I’m no different than the teenagers left twitching and unattended for hours in an overcrowded ER, or the man begging for Xanax whose screams every doctor ignores.
Who takes care of them?
Who cares about them?
It’s a mystery.
Katherine Macfarlane teaches Constitutional Law, Civil Rights Litigation and Civil Procedure at the University of Idaho College of Law. She studied Latin American Lit and Women’s Studies at Northwestern University and received her J.D. from Loyola Law School. When she's not law professoring, she writes about her experiences with chronic illness and rude doctors. Her essays have appeared in Hairpin, the Intima, BUST, the Ms. Blog, the Observer, the Huffington Post, The Mighty, and Northwestern Magazine. Her blog "Bones Drugs and Pharmacies" was featured on the Creaky Joints website. Katherine was born in Toronto, Canada, grew up in Rome, Italy and Kalamazoo, MI, and now lives in Moscow, ID. Follow her @KatAMacfarlane.
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