Another Summer
Walking around Astoria Park, she kept to the path, where the long grass was already threadbare, worn down to yellow fibers by the beat of countless feet, strolling, running, or heading to the pool. Her goal today was to walk circles around the massive piers of the two bridges, from the Hellgate’s brick archway, down along the East River to the blue steel pillars of the Triboro. The wind had picked up, freshening the humid air, and clearing a wide prairie of sky between storm fronts. Manhattan stood clear and sharp across the water.
Making her second circuit along the waterfront, she heard a familiar tootling melody, the theme song of countless summers. Mr. Softee was singing the ice cream song, “Doodle-a doodle-a doo-doo-doo. . .” Kids were running and skipping up the sidewalk to the truck window, jumping around, dragging a parent by the hand. Even with a magic flute, the Pied Piper could never compete with the lure of ice cream on a summer day.
She suddenly recalled seeing Eddie Murphy onstage, sweat pouring onto his shiny, red leather suit, doing a bit, rhapsodizing about the siren call of the ice cream truck in the projects. “Kids could hear it from blocks away, and they would lose they minds. They couldn’t hear they mother callin’, but they could hear the ice cream truck. ‘Ice cream! ICE CREAM! Maaaa! Throw-me-down-some-money! Throw. Me. Down. Some. Monnnnneyyyy!’”
She knew what he was talking about. When she was growing up on the furnace-hot streets of Chicago summers, she could hear that melody from two streets away, and would sprint home for spare change, heart pounding, hoping that she could reach the truck before it drove away. One time, she earned a quarter by sweeping out the stoop and concrete yard of the apartment building next door. After sweating for a very long hour, the super gave her a friendly pat on the back and enough for two cones.
But the last time she bought an ice cream cone was exactly two years ago today. It was the last one she would ever eat. That Mr. Softee was on the northeast corner of Union Square. The farmer’s market was in full swing. A tanned woman in pedal pushers walked past the ice cream truck with two bulging bags, celery and beets bursting from their tops. An older Asian couple cradled boxes of basil. Two people lost in their own music waited for ice cream while the sun poured down. One was skinny, and one was fat, but they ordered the same thing.
When her turn came, she asked for a small chocolate cone, no sprinkles, and immediately began rotating her cone to keep the drips in place. She used her clumsy left hand to steady her right, and slowly limped towards the clinic, putting off the appointment as long as she could. The melting ice cream tasted so much richer than when frozen hard. It gathered in the bottom of the cone, in the waffle-like inner chambers, and slowly softened the crunchy shell. She leaned against the brick wall outside the clinic, grateful for the support, until she had finished the last gooey bit.
—•—
It was a short step from wishing for an ice cream cone to remembering why she couldn’t have one. After the clinic, the ER. Then 10 days at Beth Israel Medical Center, a complicated spinal tap, and multiple MRIs. Then two months of steroids while she buried herself in research, chat rooms and self-help books. She finally got her diagnosis.
Dr. Harvey was was the director of the MS Center. He was a bulky man. In 1890, he would have been called ‘substantial.’ His expensive suit pushed aside his white coat, casually draped open, as if he was much too busy to button it. Dr. Harvey quickly flipped through the large pile of negative films on his desk, not even bothering to clip them to the light box. He plucked six black sheets out of the pile and held them up to the ceiling light.
He said, “Yep, you’ve got it.”
“Huh? What? I’ve got what?”
“Multiple sclerosis.”
“Are you sure?”
“Oh yes. It’s classic."
He flipped up one negative and snapped it into a lightbox on the wall. "See these lesions, here on the brain?" He snapped up another negative. "And there’s a clear one, in the cervical spinal cord.” She peered over his shoulder anxiously. They were just faint, cloudy spots. They looked like distant galaxies.
Dr. Harvey sat down behind his very large walnut desk and leaned back comfortably.
She waited a minute, in case he had more to add. She asked, hesitantly, “Okay. . . What’s the next step?”
“Next? Oh. . . well, I’m sure you’ve done the research. I find that most patients do. We need to get you started on one of the ABC drugs.”
“But you just confirmed my diagnosis, and I’m just learning about this! That's why I came to you. I'm really concerned about side effects from the medications. I read about injection-site infections, the headaches, vertigo, fatigue, and flu-like symptoms.”
“Yes, well. . . You should talk to the nurse about that. She works with patients on managing the medications. "
"Aren’t there alternatives? Other things I can do? What about changing my diet, and avoiding allergens? I already gave up wheat and dairy after I was hospitalized. I’ve been reading about how critical vitamins and essential fatty acids are. Which ones really help? And what about exercise and dieting? I could lose weight."
"We do find that the placebo effect has some value. Patients who make the changes you’re talking about, and really follow through on them, often see some improvement.”
“How much improvement are you talking about?”
“It could be as much as thirty percent, maybe more. That is, a reduction in the number of actual exacerbations of the disease. But there’s no guarantee. So you really need to start the injections as soon as possible. You can talk to my nurse about getting started.”
“Ummm. . . How much improvement could the drugs offer me?”
“Usually we see at least a thirty-three percent reduction in exacerbations of autoimmune activity.”
“But that’s almost the same as lifestyle and diet changes I mentioned!”
“Well, yes, okay. . .you can see that if you do the math. . . if you combine those approaches, you could theoretically have a greater chance of improvement.”
Thirty-three percent was a significant number. It echoed in her head. But what did he mean by "placebo effect?" Were the improvements real or not? Could she really improve her odds by 60% or 63%? But what did that really mean in terms of the weeks or months she could gain before she was crippled for life? Her hands and feet had already become distant objects, her legs and torso were encased in invisible ice, vertigo was constant, and her cramping feet made walking a torture.
Research explained that the soldiers of her immune system had staged a coup d'etat. They had been pushed over the edge by an unknown combination of mysterious factors, or possibly suborned by a virus. Nobody knew. Chronic stress, or allergic reaction? Insect bite, inflammation, or exposure to toxins? What had set the stage for something, possibly a simple virus, to reprogram her immune system? The troops were now attacking their own government and tearing down the palace! Instead of defending their queen, they were dismantling her brain and spinal cord!
The future narrowed to a crooked path through a dark canyon. Having quit an impossibly stressful job—starting a business in Manhattan with partners who micromanaged her every move remotely—she spent the rest of that summer indoors, left her phone off, and watched every single episode of Babylon 5 and Firefly back-to-back, sitting in the dark. Then she moved on to every Star Trek episode in every generation. Between shows, she wept over her withered dreams. Plans for painting and teaching seemed pointless. Winter had come early.
Her husband drove her to doctors, but otherwise felt helpless to help. He too had seen the dark canyon and the bleak future beyond. Would he still care for her—in all senses of the word—if she were confined to a wheelchair? Who would?
She stopped managing her non-profit community for artists and eventually shut it down. She stopped checking her voicemail. Eventually her email and voicemail filled up, and old friends actually mailed hand-written letters of concern, postcards from the land of health. For the first time in her life, she prayed. Every so often, in the dark place, she would remember her mother’s voice saying, “You just have to put one foot in front of the other.”
After a few months, she ran out of misery, and thought again about how her mom had gotten through abandonment, bankruptcy and divorce, just by walking forward. She clenched her fists and clenched her teeth and began staying up all night, sifting the internet for causes and cures. Nobody had an answer, but everyone had ideas. She figured that the real trick would be keeping her army of immune cells on stand-by, instead of on red alert, for the rest of her life.
To keep inflammation down, known allergens were now off-limits. She gave up gluten. That meant wheat and barley. No more crusty French bread or aromatic pizza Margherita. No chocolate cake. Or beer! She had to examine every label. Modified food starch was out. Soy sauce was made of wheat. And no lactose or casein, the natural sugar and protein in dairy. No more cappuccinos, cream cheese on a bagel, no more brie. Certainly, no more ice cream cones! But really, the sacrifice of becoming a picky eater seemed pretty small, with her mobility or her life hanging in the balance.
The hospital billed her $56,000 for an eight-day stay. With no job and no money, she applied for Medicaid. They told her she would not get one dime. She asked the Legal Aid Society to help her fight for coverage. Exhausted, profoundly depressed, uncertain about how she could ever pay for MS medications, and worried about the side effects, she put off starting the injections. Her new neurologist wrote "Refuses medication" in his notes. She worried that this would give Medicaid another excuse not to pay her medical expenses.
She spent countless hours in health food stores, button-holing the staff with questions: which supplements really reduced inflammation, which ones were the best antioxidants, did any of them repair nerves, or improve brain function? What about ginger? Turmeric? A friend suggested Cat's Claw. A staff member at LifeThyme in the Village had medical training and offered thoughtful suggestions. She spent her remaining money on supplements—Vitamins C and D, calcium, alpha lipoic acid, evening primrose oil and omega 3. She bought weekly pill organizers and filled them up for herself and for her husband, too, reasoning that everyone needs to reduce inflammation.
In a health food store in Upstate New York, near the Hudson River, a serious young man told her about Lion’s Mane, hericium erinaceus, a medicinal mushroom. Once treasured by Chinese emperors as literal food for the brain, some Chinese studies claimed that Lion’s Mane actually promoted nerve growth factor. Nothing else, including pharmaceuticals, could make that claim! She looked up the studies, puzzled through the bad translations, and added medicinal mushrooms to the mix.
Living in New York City made it easy to explore alternatives to an inflammatory American diet. She tried twenty types of gluten-free bread and tossed most of them as inedible, but kept Udi's. She stocked up on soy and almond milk, and discovered passable dairy-free yogurts. Brown rice was a great alternative starch, so she ordered Chinese meals, learned to cook Thai curry, and made stir-fries with gluten-free soy sauce. Indian cuisine was fine if she avoided the breads. (Godd-bye naan). Corn was okay, so she made tacos or ordered fajitas. She started buying only organic produce and meat, and avoided GMO corn and soy like the plague.
While searching for answers, she started pushing herself to walk a little further every day. At first, around the block with two canes. When she could walk eight blocks with one cane, she returned to teaching.
Her neurologist said, "Looking at your MRIs, I honestly can't explain how you are as functional as you are. Tell me again about these supplements you're taking."
—•—
A sporty red convertible rolled past, top down, pounding out rock and roll. She shook off the past two years, like a dog shaking off cold water, and kept walking.
By now, all the kids were clutching colorful ice cream cones and cups, covered with dips and sprinkles. Some were running around, precariously balancing cones that seemed far too large for them. She smiled. A sugary, air-conditioned chill wafted from the window as she walked past the ice cream truck.
Dads and granddads sat in groups against the wall, with their backs to the East River, and spooned up sweet treats from paper cups. They gossiped in Spanish while following sports on the radio. A copper-skinned mom in a purple sari rested her dimpled toddler on her hip, and thoughtfully licked a fruit pop. An athletic young couple jogged right up to the truck window, but reconsidered and kept on jogging.
As if their departure were a sign that the sidewalk market was already saturated, Mr. Softee started the engine and slowly pulled away from the curb. “Doodle-a doodle-a doo-doo-doo.” The melody moved up the street and faded away, lost in the sounds of kids shouting, the happy beat of salsa on a radio, the horn of a tugboat on the water, and the oceanic murmur of traffic on the bridge.
The sun was lower in the sky, and she was late to meet her husband for a Greek lunch. A cool breeze off the river lifted her shirt. The freshening air rustled bright leaves overhead. She laughed out loud, picked up her pace, and started running.
© Li Gardiner
July, 2009
