by Amy B. Scher
He never found out, or he never said anything. Either way, I secretly owed him.
“Okay, I’ll try it,” I agreed.
My dad rolled a doobie, and I still don’t know which was glowing brighter, the joint or his face. His pride over our new father-daughter bonding experience was epic. I took three deep tokes, sucked all the THC I could into my lungs, and waited.
But it didn’t relieve the pain. Two hours later, Dad was snoring on the couch, having the deepest sleep of his life, and I was wide awake and bug-eyed, watching the divots in the ceiling come alive.
It was after nearly a year of oxygen treatments and a rigorous Lyme disease treatment protocol that it became clear that I wasn’t getting significantly better. I did experience some improvement in cognitive function—the ability to speak and think more clearly—but the rest of me didn’t seem to be following.
I spent most of each day using all my might to stay alive. I studied the blossoms on a bubble-gum-pink cherry tree outside my apartment window, wondering if I’d still be there the next day to see it. Sometimes I wished that I wouldn’t be. The treatments had likely done all they could do—the antibiotics killing the bacteria, the supplements helping support my organs and glands, and the oxygen detoxing me and bolstering my immune system. But it was not enough. What would repair the damage done to my body? What would turn me, an arthritic, exhausted mess, into the normal healthy person that I deserved to be?
The answer, at this point, was unknown.
That’s when we decided to slow all the treatment down to the bare minimum needed to at least try to keep any remaining bacteria at bay. I finished my ninety-ninth hyperbaric oxygen treatment and cut back to only the prescriptions and supplements that were essential.
Within weeks, I stopped vomiting. I could move around by myself with enough painkillers, antinausea meds, and sheer will. I never attained any version of the state of health that I imagined for myself; but without the same level of pain, fatigue, and at least a dozen intense symptoms burdening me, I had spurts of being more functional, waves of feeling slightly less horrible. It felt sometimes like I was living.
From this turning point until I set off for India would be a slow and steady march, coming out of a dark hole and into the tiniest light of day.
Even though I was now free to move away from Chico, I did something that felt surprisingly right: I stayed. I stayed because when I listened closely to my body, Chico felt like home. I stayed because the trees and the long grass called to me. I stayed because I had no reason to leave. And I stayed because something told me that this could be my chance to begin again.
I moved out of my apartment with the lackluster walls and shag carpet, and into a new, light-filled place with a sliding door that opened to a field that showcased the setting sun each evening. I spent time on my patio sipping lemon water, counted stones around my toes at the local creek, and strolled through the farmer’s market in Chico’s charming downtown. I bought bunches of sunflowers the color of canaries and blackberries so plump that they popped in my mouth when I ate them.
Each blistering summer afternoon, I let the 110-degree heat soak into my aching body and melt the pain into something less intense. I splashed around in the cool water of the pool at my apartment complex. I met Ajay, who would later introduce me to the world of Indian food. I had a friend, Sara, who walked slowly with me through the park. Matt, Chico’s favorite massage therapist, worked magic on my resistant muscles. Jeff, who moved here from my childhood neighborhood five hundred miles away, invited me over for barbecues with his friends and taught me how to make the best guacamole on earth. Once I went to a Colbie Caillat concert alone and attempted to dance like the cool teenage girls sitting next to me in tube tops. It wasn’t always easy being on my own, but the effort of independence was necessary, something I so desperately needed, even if I didn’t always do it well.
How things have changed in just a single orbit around the sun—the year of 2007. Watching the late-night smog dance over Delhi, I trace 2007 backward in my mind: starting with the call when Dr. Shroff said “Come to India now,” then to the enchanted island of Maui before that where I serendipitously met Amanda the Stem Cell Messenger, and even earlier than that to my beloved town of Chico when I finally received the Lyme disease diagnosis, and despite it, a little piece of spirit back.
How many individual moments created the tiny waves of motion that would turn the tides of my life? How many times in one year did my destiny quietly change its course, its direction? How many moments of this past year had to be orchestrated perfectly in order to get me to where I am right now? This is the work of the Universe: each junction a perfect culmination of mishaps and synchronicities.
Tonight I am reminded that years go by slowly, and they also move in invisible flashes without any foresight of what is to come. From my hospital room in India, an unknown future is awaiting my arrival.
When the clock finally strikes midnight, the city sets itself ablaze: the sky explodes into a rainbow light show, people rejoice, and dogs howl. From my prime spot at the window, I usher in 2008 with a warm welcome.
Tonight there is joy, and uncertainty, yes; but there is also this indisputable fact: No matter where one is in the world, no matter what has been or what might come next . . . as long as we are alive, there will always remain the purest, most simple opportunity—to begin and begin again.
6
This Brain Is on Fire
WEEK FIVE
It’s green! Everywhere I look is green. Lush trees. Vibrant flourishing bushes. And a large reservoir with green . . . murky water. But still, it’s green!
We are in Hauz Khas, a large neighborhood a little over a mile from the hospital, but a whole new world. This area can be traced back to the thirteenth century and is scattered with ruins of medieval architecture. At the heart of its centerpiece is a lake. Around the lake are scattered domed tombs of Muslim royalty. Ducks and geese from the reservoir mingle with the tourists who flock here. A group of elementary school–age kids are playing a spirited game of cricket as passersby cheer.
It is on a pleasant Sunday afternoon, under the warm sun, that I and a group of patients have made our way to this hidden sanctuary in the dusty Delhi metropolis, some of us by foot and some by wheelchair. I have no idea how this destination has been under my radar all of this time, but it is the best surprise of my trip thus far. I am in paradise.
I am not a girl who loves roughing it, but I am definitely a girl who loves nature. I grew up by the teal-green ocean in the palm-tree-studded Southern California town of Ventura. Our four-bedroom farm-style house in a middle-class neighborhood was packed with pets of every kind, books, music, and love, perfectly planted among the vibrant orange orchards that became our extended backyard. It was full of mazes that David, Lauren, and I got lost in as kids—and then later as teenagers, where we snuck out to smoke cloves and drink with our friends. As a family, we spent weekends in the nearby Shangri-la town of Ojai, where I was born, surrounded by eight different kinds of emerald-green oak trees. Green is my favorite color and my favorite feeling.
Making our way from the hospital to this glorious mecca, we draw endless stares from locals, and especially children. I am getting accustomed to this, hardly flinching when we weave in and out of dense, pushy crowds, and meet the eyes of people who seem shocked at our presence. Our fair skin is one anomaly in this city, but wheelchairs are virtually a sight unseen. Because of the extreme poverty in India, most disabled people can’t afford a wheelchair, which here costs approximately seventy-five American dollars. Our group has six sets of wheels, and it has not gone unnoticed. If my dad were here with us, I’m pretty sure he’d be offering demonstrations of how wheelchairs work. He loves to engage everyone he can find in every kind of conversation. But he’s not here, because he is stuck in bed a few blocks away at the bed-and-breakfast, in one of his mysterious depressive episodes. It seems that whatever has been stalking him for the past two decades crosses internat
ional borders with ease. As usual, there is no identifiable trigger that caused it, no sign as to when it’ll pass. But it will. Mom is holed up with him until it does.
We first arrive at Hauz Khas village, which is at the entrance of this neighborhood and lined with upscale jewelry shops and art galleries. The narrow streets are the color of sandstone and rust.
It is only once you’ve made your way through the village that endless acres of parkland suddenly open up before you. This part of Hauz Khas covers two levels with expansive green vegetation and terra-cotta-colored, dome-shaped buildings.
On the first level, we see various tombs of minor Muslim royalty from the fourteenth to the sixteenth centuries.
Below that, down several uneven flights of stairs made from brick, sits the murky green lake, originally built as a reservoir to supply water to the local community. Hauz Khas itself was named after this body of water, and the name translates to Royal Lake. The towering trees instantly transport me to the deep forests of Northern California in Mendocino, where there is abundant fresh air and silence. It reminds me of the few months I spent there living with my parents after Jay and I fell apart, trying to heal my tired body and a broken heart. Each day I would walk for hours, ever so slowly, through the woods, trying to see meaning in my new life of incomplete change. It was there among the green canopies, when I felt stripped of everything I knew, that I saw actually quite a lot existed. I found contentment in the little things, like the lizard crossing a fallen log, the tree stump someone had painted pink, and the woodpecker insistent on his work. Sometimes, when you have less, you’re able to see more. There had been times in my past, when things were going effortlessly well, that I felt like I should have appreciated what I had more—paused just to feel thankful and maybe even spoke my gratitude out loud. But you can only take it in when you can take it in. And in that very difficult time after Jay and I split up, I was surprised by what I was able to appreciate quite easily. The gaping holes of what I had lost only helped to illuminate the beauty that was still all around.
The scattering of buildings that dot the property are an explorer’s dream—steep steps and sharp corners that reveal stone and brick hideaways—but none of my wheelchair-bound friends can access them. Even the flat areas of dirt are uneven with jagged rocks sticking out of the ground, a danger to vulnerable wheelchair tires. Those of us on foot enjoy being tourists and explore, while the patients in wheelchairs marvel at the view and wave to us from the top tier.
Our afternoon trip is long and feels arduous on my muscles that otherwise only get a workout in physio, but it is worth the delights of greenery in a city seemingly made of dust. It surprises me that on our journey home, I am able to push the wheelchair of a patient to give his caregiver some relief. It feels good to exert myself. My body responds with added strength instead of collapsing under the pressure. But this is not only good for my muscles; it’s good for so much more. This world I am living in is beginning to feel like life. Today I am just a girl, out with my friends, leaning into the pull of the city. My city.
It is this excursion that sets the tone of the first week in the New Year, which unfolds like a leisurely, enjoyable meal. Everything feels simple, slow, and uncomplicated.
That is how I should know things are about to take a turn. Because in India, whether it’s times of bliss or times of battle, nothing remains stagnant.
When I see Dr. Shroff the next day in physio, she approaches me with a proposal: “I think we should send you for a brain scan to see what is happening. Your balance is getting better, so it is possible that the oxygen flow is improving! It would be wonderful to take a look and have proof of the efforts.”
Since my last scan almost a year ago, I have completed months of heavy-duty antibiotics and hyperbaric oxygen therapy sessions, which should have helped address this exact problem. And now I’ve had the added benefit of stem cells! I immediately agree to the test, because who doesn’t want to see pictures of their healing brain?
The scan turns out to be a four-hour extravaganza, which, if not for my dear mother, would have sent me to the mental ward.
Outside the facility, a two-man floor-washing crew greets us. This is a constant sight in India: men who are washing and sweeping. It happens in buildings and on sidewalks—I’ve even seen people determinedly sweeping the dusty streets. Nothing ever gets clean here, but it is definitely not for lack of people trying to make it so. Every building has designated staff washing the floors nonstop. An area will be washed and rewashed over and over for the entire day. Sweep, mop, scrub, rinse, then repeat. It happens at the most inopportune times in the most random places.
These two men outside the clinic are painstakingly scrubbing the steps that lead down to the entrance. These steps are a danger already, as the handrail is only a few feet tall, far too low to rest a hand on for support. The stairs are slick with soap and water, adding insult to possible injury. I guess they don’t have slip-and-fall lawsuits here. “Take a picture, babe!” Mom screams. She hunches over, reaching for the handrail, which is down by her knees, and ducks into the frame of the camera with a funny face. What I have always loved most about my mom is her ability to see the humor in every situation.
When I was ten, we went on our annual trip to New Jersey to visit all our extended family. My parents surprised us with a side trip to the Amish country in Pennsylvania, where we stayed on a working farm. One afternoon, David and I herded the roaming goats from the field, quietly coaxed them toward our building, and stifled our laughter as we lured them into our room. But they didn’t just walk in; they RAN, jumping on the bed and over the furniture, spraying pellets of poop everywhere. When Mom saw the commotion, she didn’t yell or put us in time-out. Instead, she buckled in hysterical laughter, tears rolling down her face, motioning for my dad to break out the video camera. When we were kids, she used to tell us, “The family that laughs together stays together!” Dad would then interrupt to say, “No, no, the family that farts together stays together!” And we’d all giggle, arguing back and forth about it.
We manage our way down the steps to the scanning facility, planting our feet carefully on each one, and enter the building to hurdle our next obstacle: another bucket of water and another worker, this time bathing the tiles in cough-inducing pine-scented cleaner.
At the front desk, I check in for my appointment, pay my fee, and wait while the receptionist stares at me with no further direction. In this country, to be stared at means one of a few things: hi, sit down, I don’t know what to say, or go away. If you don’t get a stare here, you will likely get the infamous Indian headshake, or head bobble, a repetitive side-to-side tilting of the head. The head bobble is the nonverbal version of Chavi’s “fine,” meaning it’s all good, okay, I understand, and yes. I’m finally getting a handle on the subtle idiosyncrasies of the culture here.
I walk away, sitting down with Mom in the waiting area. Eventually a man comes out from the back and calls my name. I follow him on a zigzag path, around yet more mopping, and into a dark, cramped office where a doctor sits in a swivel chair. He doesn’t offer me a seat.
“Soooo?” he asks as he spins himself around, hands folded on his stomach, then waits for me to talk.
“I’m here for a SPECT scan. I had one last April in California and need another one to see if anything has changed,” I explain.
“Yessss, I know,” he confirms. “Dr. Shroff has given me the details. Now, where are your last SPECT results?”
When I explain I don’t have them, he lowers his eyes in grave disappointment and says “Ohhhh, that would have beeeeen niiiice” several times in a row. I stand there awkwardly smiling, while he makes his point.
“Yesssss, that would have beeeeen verrrrry niiiice. Verrrrry niiiice.” He shakes his head, dragging out each and every word, testing my already short patience.
“I’m sorry. Can I e-mail the records when I get back to the hospital?” I offer, trying to fix it.
“Okaaaaay,” he agre
es, content with this compromise. “Now we will begin!”
Thank goodness. I’m ready to get on with this and outta here. But then he explains that we will begin with a lot of waiting. First, I have to wait forty-five minutes while they “boil” the dye solution. I immediately wish I didn’t know they are going to boil whatever goes into me. I want to ask the doctor why they didn’t prepare the dye before I got here, because that would have beeeeen niiiice; but I cannot hear it one more time, not even from my own mouth. Next, a technician will inject the dye into my veins, which will take another forty-five minutes to work. This is the “tracer” that will go to my brain and will show up on the images of the scan. Then they will finally perform the scan—which takes another forty-five minutes.
I am starting to worry about all these forty-five-minute time blocks, because in India time is just a suggestion, everything is more relaxed, and things happen when they happen. Dr. Ashish tells the joke that IST (Indian Standard Time) actually stands for Indian Stretchable Time. He is not wrong.
Back in the waiting room, Mom and I sit and watch the floor-mopping crew circle around and around. When they get to our section, they slowly approach us and then push the mops up against our feet as a cue to pop our legs up and allow them to wash underneath. We oblige. When this happens a second time, we smile and do our duty. But by the third time, we are paralyzed with hysterical laughter, and completely unable to cooperate.
Finally, when it’s my turn, I am led down a hallway to a small alcove, where the tech administers my injection and directs me to lie still with my eyes closed for forty-five minutes. “No movement, ma’am. You must be very relaxed for accurate test,” he tells me.
