Another Summer
Walking around Astoria Park, she kept to the path. The long grass was getting threadbare, beaten down to yellow fibers by 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 brick arch of the Hellgate, down along the East River, to the blue steel pillars of the Triboro. A breeze was 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 melody, the theme song of countless summers. Mr. Softee was tootleing 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 his magic flute, the Pied Piper could never compete with the lure of ice cream on a summer day.
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.
—•—
Mr. Softee was on the northeast corner of Union Square, and the farmer’s market was in full swing. A tanned woman passed the ice cream truck with two bulging bags, celery and beets bursting from their tops. A young couple, lost in their own music, waited patiently for their ice cream cones while the sun poured down. One was thin and one was plump, 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 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 of the clinic, grateful for the support, until she had finished the last gooey bit, and walked carefully inside.
After the clinic, there was a fast trip to the ER. Then nine days at Beth Israel Medical Center, a complicated spinal tap, and multiple MRIs. Then two months on steroids while she buried herself in research, chat rooms and self-help books, before she finally got the diagnosis confirmed.
Dr. Harvey was was the director of the MS Center at a big New York hospital. He was a bulky man. In 1890, he would have been called ‘substantial.’ His expensive suit pushed open his casually draped white coat, 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 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? I’ve got what?”
“Multiple sclerosis.”
“Are you sure?”
“Oh yes. It’s classic."
He flipped up one negative and snapped it into a light-box on the wall. "See these lesions, here on the brain?" He snapped up another negative. "And there’s a clear one, on 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. Then 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 have. We need to get you started on one of the ABC drugs.”
“But you confirmed my diagnosis only now. That's why I came to you, and I’m just learning about this! I'm really concerned about side effects from the medications. I've read about injection-site infections, the headaches, vertigo, fatigue, and flu-like symptoms, and I'm experiencing these symptoms already from the MS.”
“Yes, well. . . You should talk to the nurse about that. She works with patients on managing their medications. "
"Aren’t there other things I can do? What about changing my diet, avoiding allergens, reducing inflammation? 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."
"Well, we do find that the placebo effect has some value. Patients who make the lifestyle 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 medications offer me?”
“Usually we see at least a thirty-three percent reduction in exacerbations of autoimmune activity.”
“But that’s almost the same benefit as the lifestyle and diet changes.”
“Yes, 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.”
What did he mean by "placebo effect?" Were the improvements real or not? Could she really improve her odds by 60% or more%? if she went on the injections and made the other changes? What would that 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.
Her research explained that soldiers in the army of her immune system had staged a coup d'etat. Their loyalty had been tested to destruction by an unknown combination of mysterious factors, or possibly suborned by a virus. Chronic stress, or allergic reaction? Venomous insect bite, inflammation, or exposure to toxins? She had all of the above triggers. But what had set the stage for some agent, possibly a simple virus, to reprogram her immune system? Nobody knew. And 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.
She quit an impossibly stressful job—starting a business in Manhattan with her husband and absentee partners who argued every decision and refused to approve health insurance. The hospital billed her $56,000 for the initial nine-day stay. With no job, no insurance, and no money, she applied for Medicaid. But Medicaid told her, "Miss, you will not get one dime." She asked the Legal Aid Society to help her fight for coverage.
Her future narrowed to a crooked path through a dark canyon. 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 each 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 seemed 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?
Exhausted, profoundly depressed, uncertain about how she could ever pay for MS medications, and worried about the side effects, she kept putting off the MS injections. Her new neurologist wrote, "Refuses medication" in his notes, and she worried that this would give Medicaid another excuse not to pay her medical expenses.
She stopped managing her non-profit community for artists, and eventually shut it down. She stopped checking her voicemail, and eventually both her email and voicemail filled up,. Friends actually mailed hand-written letters of concern, postcards from the land of health. For the first time in her life, she prayed. Sometimes, in the dark place, she would remember her mom saying, “You just have to put one foot in front of the other.” Her mother had survived abandonment, divorce, foreclosure, and bankruptcy, by walking forward.
After a few months, she ran out of misery. 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, the proteins in wheat and barley. No more crusty French bread or pizza Margherita. No chocolate cake. Or beer! She had to examine every label. Modified food starch was out. Most soy sauce was made of wheat. And no lactose or casein, the natural sugar and protein in dairy. No more cappuccinos or cream cheese on a bagel. 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.
She spent countless hours in health food stores, button-holing the staff with questions: which supplements really reduce inflammation, which ones are the best antioxidants, do any of them repair nerves, or improve brain function? What about ginger? Turmeric? A friend suggested Cat's Claw. A staff member at a health food store in Greenwich Village had medical training and offered thoughtful suggestions. She spent her remaining money and credit 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 the Hudson River Valley, a serious young man told her about Lion’s Mane, hericium erinaceus, a medicinal mushroom. Once treasured by Chinese emperors as a 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, but kept Udi's. She avoided GMO foods, buying only organic produce and meat, and soy and almond milk, discovering passable dairy-free yogurt along the way. Brown rice was a great alternative starch, so she learned to cook Thai curry, and made stir-fries with gluten-free soy sauce. Indian cuisine was fine if she avoided the breads (good-bye naan). Corn was another good starch, and she made tacos or fajitas, and discovered pao de queijo, a gluten free roll from South America.
While searching for answers, she pushed 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.
After a year, her neurologist said, "Looking at your MRIs, I honestly can't explain how you can be 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 at their joy. 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 at a Greek restaurant for 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
