This Is How I Save My Life: Searching the World for a Cure: A Lyme Disease Memoir272
This Is How I Save My Life: Searching the World for a Cure: A Lyme Disease Memoir272
“An Eat Pray Love-like memoir.” —Pam Grout, #1 New York Times bestselling author of E-Squared
When doctors have all but given up, when a diagnosis eludes you, and when every test result raises more questions than answers, how do you save yourself?
By the time Amy B. Scher was twenty-eight-years-old, she had lived through almost a decade of misdiagnoses, excruciating pain, brain lesions, bone marrow biopsies, blood transfusions, and multiple hospital stays to treat her late-stage, chronic Lyme disease.
Taking forty-four pills a day and deteriorating rapidly, she consulted with more than sixty doctors, including the top experts in Los Angeles, the world-renowned Mayo Clinic in Minneapolis, and a state-of-the-art hospital in Chicago. When the best physicians in America labeled her condition incurable and potentially terminal, it was up to Amy to blaze her own path forward.
Then, in a stroke of serendipity, she heard about an experimental treatment only available in India—human embryonic stem cell therapy—which had as much probability of killing her as it did of curing her. She boarded a plane with no idea of what awaited her: culture shock, radical medical treatment, and most surprising of all, life-affirming love.
With warmth and humor, Amy’s powerful and uplifting story of sheer determination is for anyone who believes in—or doubts—the existence of miracles. It is for anyone who wants desperately to believe in the power of the human spirit when it seems that all hope is lost. For everyone who has suffered from chronic pain, grappled with an autoimmune condition, fought for a diagnosis, or trusted their gut and their body when no one else did, Amy is a living example of how our instinct to survive can propel us onward.
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This Is How I Save My Life
WELCOME TO DELHI, INDIA—IF YOU DON’T PAY ATTENTION, YOU MIGHT LOSE A LIMB. A sign with these words is not posted anywhere upon our arrival, but it should be.
I could have also used a sign that offered GOOD LUCK! or, equally appropriate, one that read, HAVE YOU LOST YOUR ACTUAL MIND? In fact, the signs I need at my first point of entry into the country are endless.
I am twenty-eight years old when I arrive in magnificent India. I am here with my parents, an updated vaccine record, and a visa, searching for something I cannot find at home: a cure. In a tiny hospital on the outskirts of Delhi, a female Indian doctor is offering experimental embryonic stem cell therapy to patients from all over the world. That is what I have come for.
For the past seven years, my body has been falling apart, sometimes via a slow decline and sometimes like an avalanche. It has been my full-time job to try, mostly unsuccessfully, to put it back together.
My medical diagnoses seem too many to fit in my petite, five-foot frame: inflammation of the heart, autoimmune thyroid disease, brain lesions, chronic fatigue syndrome, encephalopathy, arthritis, chronic inflammatory demyelinating polyneuropathy, fibromyalgia, hypotension, adrenal fatigue, connective tissue disease, leukopenia and neutropenia, endometriosis, and, finally, the reason for them all: late-stage Lyme disease.
But the formal names assigned to my suffering do not begin to convey the actual experience of it. Over the years, there have been hundreds of symptoms, some visiting for only days at a time and others making a permanent home in my body. Each of the symptoms has had a part in destroying not only my physical self but the rest of me as well: fierce, full-fledged body aches making it difficult to move and unbearable to stay still; exposed nerves in my limbs firing with pain and no rhythmic pattern to warn when the worst would come; extreme upper body weakness that kept me from lifting my arms above my shoulders; bottomless fatigue so heavy it was too much effort to move my lips and speak; dangerously low blood counts forcing my immunologist’s insistence that I not leave the house; unexplained night sweats that drenched my bedding; cognitive impairment causing me to jumble my words; joints so painful and swollen that lowering myself to the toilet or rolling over in bed put too much pressure on my hips, and was impossible to do alone; light and sound sensitivity that made me afraid of the world; unrelenting headaches that drill through every space in my skull; bouts of labored breathing that had me gasping for air to take just ten steps; patches of skin so sensitive that it felt as if I were being dragged across asphalt naked; and debilitating, painful menstrual cycles triggering dangerously heavy bleeding. No organ or system of my being has been spared.
The intensity of my symptoms has ebbed and flowed, altered by slight relief from treatments and sometimes inflamed by them. They have risen and fallen as tides, knocking me over and stealing my breath, or sometimes, in their gentle mercy, lapping against me with only mediocre force. But always their presence is an undertow; a more subdued reminder that it is never safe to take my eyes off the unsteady shore, off my defenseless body.
I am missing a chunk of my left thigh from a muscle biopsy taken to study my nerves, have faithfully swallowed forty-four pills every day, have listened to the sound of doctors chiseling through my bone marrow to look for clues, have seen all the best experts at the top institutions in the United States—from the Mayo Clinic in Minnesota to Northwestern in Chicago to the University of Southern California, and beyond—hearing the dreaded words over and over: “We don’t know how to fix you.”
I have suffered through experimental IV medications, rigorous physical therapy, almost a hundred hyperbaric oxygen treatments, self-administered daily antibiotic injections, countless medications, far-reaching alternative approaches, and life-threatening side effects worse than the original symptoms. Doctors often refer to me as a mystery.
By the time I land at Indira Gandhi International Airport in India, for what I believe is the very last thing on the very last list of things to try, I am thankful to be a bettered version of who I once was, during my worst days on this earth. Just two years before, I was mostly bedridden with pain in every inch of my body, in a semicomatose state from heavy-duty medications, and dependent on near-constant care by others.
In my somewhat rehabilitated stage, I feel a little bit repaired, like the first time after an epic cold when you are grateful just to breathe from at least half of one nostril again. I try to be thankful for what I do have. I can function at the most basic level of taking a shower and leaving the house, but I haven’t been able to work in years. My life is small and square. Still, I am living. In order to do so, I need a constant barrage of narcotic medications, nerve stabilizers, and antianxiety medications to try to control the symptoms that remain: excruciating systemic nerve pain, paralyzing fatigue, a broken immune system, heart complications, and the weight of an illness that feels heavier than my whole body. I have perfected the dosing and rotation of my prescription medications as a temporary way to experience a fragmented life—even, at times, a joyous one. I try to convince myself that where I am now is “good enough.” I keep my eyes glued on the bright side: that I am walking, talking, and driving again; that I live on my own; and that, even though things are not perfect, I am better than where I’ve been before. But the real truth is that I’m still a mother-freakin’ mess. Although looking at me, you might not know anything has ever been or is still so seriously wrong. I style my wild, curly hair every single day, I paint on my makeup, and I fake being seminormal in the very best way I can.
Inside the places that no one knows but me, my heart is split in a million pieces because I am a human being who is lodged in the in-between—in between living and dying. I want to be better than “good enough.” If I don’t move the goalposts for my own life, who will? I want not only to stay alive, but to be alive, to lead a life. I am more afraid of living in this condition forever than I am of dying from it.
I am also alone—partner-less—for the first time in eight years. I am struggling to adjust to life without Jay, the man who took care of me, but also to whom I carelessly gave away all of myself.
Because of all this, I am here in India. I am ready to let everything go and trade it for a life. I am here to get the cure. I am also here to gather the things I have no idea I need, but that is totally unknown to me at this moment. I am here, maybe somewhat irresponsibly, to risk my own life to find it.
It was only three months earlier, as I inhaled the sweet smell of sugarcane in Maui, that I first heard about this highly controversial treatment, which might give me the life I was looking for.
I had just finished a grueling Lyme disease treatment in Chico, California, a small Northern California college town dripping with greenery and hippies. That’s when my parents sat me down on my brown tweed rented couch, next to my rented TV in my newly rented apartment. After I’d left Jay and, with him, almost everything I owned, nothing in my life was mine anymore.
“It would be good for you to do some writing,” they said with both joy and hesitance, revealing a brochure from a writers conference on Maui. But I think what they might really have been saying was: This is no life for you. We don’t know if you’ll ever have one. You want to write a book. Go do the only thing that hasn’t been taken from you: your writing. “And we might have already signed you up!” they jumped to tell me, preempting my no way (which was exactly what I planned to say). I tried to reject the generous offer, reminding them it was a good day for me if I made it out of the house or just to the kitchen to make my own food, and that I hadn’t written a single thing in forever anyway. But I stared a few seconds too long into their hopeful eyes, and succumbed to the superpower of Parental Jewish Guilt.
That’s how I ended up on the lush island of Maui, where I met Amanda, a paraplegic who had just returned from a stem cell clinic in India after being treated for a spinal cord injury. Each of us having arrived at one of the conference sessions at the completely wrong time, we started chatting, at first mostly about how we both managed to screw up our schedules so perfectly in sync.
“I made my way here straight from India after receiving stem cells!” she explained in her singsongy Australian accent. “Look, I can wiggle my toes! Isn’t that wild? Eight weeks ago, I couldn’t move anything from here down.” She pointed to her belly button. We immediately bonded over our commonality: our struggling bodies and our desperate desire to heal them. “Ah! The doctor who treated me in India knows about Lyme disease. You should contact Dr. Shroff. Go get stem cells, maybe!” She said it like it was a casual suggestion for dessert. Go get cheesecake! And maybe get it with strawberries!
There was much that came during the short months between serendipitously meeting Amanda and the day I booked my flight to Delhi. First, the doubts: Maybe I really wasn’t sick enough for this? Amanda couldn’t walk. That was serious enough for an experimental treatment in India. Could I even survive a twenty-one-hour flight? Where was I going to find the $30,000 for treatment? Who would go with me? What if it was a scam? And OMG, again, where was I going to get $30,000?
When I got home from the conference and told my parents every thought in my brain, they said only two things: “We’ll figure out a way,” and, “If you’re going, we’re going too.” So I contacted Dr. Shroff, organized and sent my medical records, waited for the “Yes! You can come!,” started fund-raising, and had the Indian visas rushed (my first lesson about India: all things can be expedited for the right price). The only thing left to do after all that was totally ignore any practical rationale that told me I was absolutely and completely insane for doing this.
As I said, there was a lot that happened to get me to India—but compared to what felt like the weight of a thousand pounds I’d carried up to that point, the decision to go was a feather.
I needed India. I felt this truth in my bones. India might be my exotic healing miracle, my saving grace, the country that delivered me my long-awaited alternate destiny: health. After all I had been through, I believed I was truly ready.
I am a Virgo to the core—a logic-loving, process-of-elimination, pragmatic decision maker. These traits mean that I don’t make decisions quickly or gracefully. I’ve been known to agonize over where to go to dinner like it’s my last meal on earth, read hours of online reviews for something that costs five dollars, and obsess over which color to get my toes painted at the salon, even though I always choose an optimistic shade of blue, and it chips off in a week anyway. But for this, the most important decision of my twenty-eight-year-old life, I didn’t make lists of pros and cons or even give any decent consideration to what it might actually be like when I got there—easy, difficult, or epically scary. I only set my mind on a singular mission: to go get the cure in India so I could come home and get on with the rest of my life. This was Life or Death, not Eat, Pray, Love. There would be no epic spiritual crisis to endure, no humorous travel tales to tell, and there was zero chance of falling madly in love.
I couldn’t hear the Universe laughing in my face back then, but I am sure now that it was.
In reality, nothing could have readied me for what was to come, because India is not just another destination to prepare for, like Thailand, Mexico, Costa Rica, and all those I had visited before it. India is different. India is its own world. India is not for the faint of heart or for the takers. You do not go to India for what you want and carry it away with ease. But I had no idea about any of that. I had a blinding naïveté about what was about to happen to me, which in hindsight was possibly a very good thing. As I arrive at the Delhi airport, I am completely unable to foresee how fiercely India is about to shake me.
With what seems like no effort at all, I am being launched over broken floor tiles via a wooden wheelchair that is tilted thirty-five degrees to the left. My blond hair and white skin are calling attention to me. Mom and Dad are running behind us, desperately trying to keep up. People are pointing and staring at us as I attempt to deflect the discomfort of being a foreign sight. My own thoughts are quickly drowned out by the deafening buzz of Hindi chatter.
I have no time to process the enormity of it all as my wheelchair escort, whose name I don’t know, maneuvers me through my new world without caution. While I can walk somewhat confidently on level pavement now, when the ground is rough or I have to walk a decent distance, I use a wheelchair. My own legs are more stable than this wobbly wheelchair, though, and that’s not saying much. It has one rickety wheel and is missing its foot pegs. My ride has to be continually corrected and realigned in order to stay on course. When my wheelchair escort isn’t paying full attention, we veer into other passengers who are forcing their way outside.
This unpredictable ride mirrors this life of mine, in which I always feel about three seconds away from being dumped right out onto the floor, left to struggle back up again while everyone else flies past me with ease.
When we exit the double doors of the airport baggage claim into the great wide open and I see my new world for the very first time—tattered, worn, tired, dirty, and clouded in debris—I see myself.
Everything in me comes to a screeching halt.
This is where that sign should go. WELCOME TO DELHI, INDIA—IF YOU DON’T PAY ATTENTION, YOU MIGHT LOSE A LIMB.
I am smacked by an assault on my senses. There is a blast of different noises coming from every single direction: construction equipment, loudspeaker announcements in multiple languages, and boisterous laughing. I see a man standing in the middle of the sidewalk singing loudly to himself. A cloud of smoke rushes toward me, but I can’t figure out where it’s coming from. My throat stings on contact. On the other side of the street, I see a huge parking lot. Most of the cars in it are white and Toyota-looking in size and style. I have no idea how people tell them apart when they come back to the lot. The asphalt of this parking area is buckled, with large parts completely missing, exposing patches of dirt that sit a full ankle-twist below street level. The night air is thick with a gray haze, but I don’t see a fire. People are yelling, and I can’t tell if they are angry at each other or screaming into the Universe just to be heard. It is total and utter chaos.
This is when I realize we have lost my parents. I can’t locate them anywhere in the sea of people. Trust me, if they were here, I’d spot them. You couldn’t miss two New York natives in this crowd if you tried.
My mom, Ellen, is two parts badass and one part stereotypical Jewish mother. She wears the pants in our family. But if you know a Jewish mother, you knew that already. She is full of love and funny as hell, and does everything in life with a determined-to-kick-some-ass stride. She walks fast and talks even faster with her thick Brooklyn accent. When a song from Dirty Dancing comes on, she can’t help but break out her moves as her blond ponytail swings along. When I was growing up, my mom and her best friend owned a boutique chocolate store. In the back corner of the store was a secret closet filled with their best seller: X-rated chocolates. Sometimes I’d come home from school and she’d be in the kitchen humming “Hungry Eyes” while pouring chocolate into nipple candy molds. This is my mother.
My dad, Abraham Solomon Scher, came into this world with a big name, a big weight (thirteen pounds), and a spirit to match them both. This bald, bearded Santa Claus lookalike tells the best Woodstock stories you’ll ever hear and has either wise advice or a wiseass joke for every crisis you might endure. He is obsessed with breaking and then fixing things, the super powers of Velcro, and befriending every stranger he meets. He often wears a red clown nose just to make people smile. When my younger brother, David; my older sister, Lauren; and I were growing up, Dad privately told each of us that we were his “favorite.” He’d whisper it in our ears, write it in cards, and sneak it into conversation whenever he could. Then he always added his P.S. Don’t tell the other kids!
My mom and dad are my very best friends.
Parked on the curb, without my parents, I am staring at the parking lot in total overwhelm. I have felt like a lost soul for quite some time, but feeling like a lost child is worse. Tears burn my tired eyes.
What seems like a decade later, but is probably only a minute, Mom and Dad appear out of nowhere with an upbeat young man holding a sign that says our last name, SCHER. He is in his early twenties with unblemished, milky cocoa skin. His teeth are so white that he must bleach them every morning and night.
“My name is O.P.!” he belts out with a huge grin. “I am here from hospital Nutech Mediworld to gather you, Mom, and Dad!”
My parents are smiling at their new hero.
Two men who are dragging our luggage accompany him with four suitcases for the three of us for eight weeks. O.P.’s wide and dazzling smile makes him look eager with his every word.
“The hospital has sent me to pick you up!” he says, motioning to me with a wink and a nod. He flips his perfectly parted thick mound of dark hair and we follow him.
O.P., our new leader, is speaking in Hindi to his team, laughing as he tips his head from side to side. He is a wave of joy. Weaving and dodging with no effort at all, he maneuvers us through hundreds of cars.
I watch with anticipation as Mom and Dad try to process and react to the shock of their disordered new surroundings. This is their first time out of the United States. They didn’t even have passports before I brought them here, on this grand undertaking, to this beautiful, messy, wild country. Back in 1976, they traveled across the country from New Jersey in a brown VW bus they named Bernie, and settled in California to start a family. This is pretty much the extent of their travels, up until this moment. What have I done to them, my sweet parents, who have come to the ends of the earth for me?
O.P. halts and turns to address us. “Now!” he announces with gusto. “You”—he points to the three of us—“will go in thiiis car!” He pauses. “Aaaaand . . . your bags”—he points—“will go in thaaaat car.”
My mind is blank. Whaaaat? I can’t make any words go to my lips to respond, but am not sure what to say anyway. He wants us to part from our belongings. He is sporting an extra-extra-huge smile, to assure us that his plan is a sound one. In front of us are two white minivans, but far less superior in size to those we see in the States. They are something like mini minivans. Everyone knows not to go with unknown men in unmarked white vans, especially without any of your stuff. And while I certainly know better, I somehow completely trust him.
I make eye contact with my parents in an effort to have a nonverbal conversation that brings some clarity about what we should do here. I can hardly think straight, between my narcotic painkillers, antianxiety meds, no sleep, and it being first thing in the morning California time. I half-smile toward Mom, asking with my face, Do you think this is okay? She turns her eyes away and stiffens her body. Read: What did you get us into? When I look at my dad, he is clenching the travel pouch holding his all-important documents that is dangling around his neck. He has a look of sheer terror in his eyes, his rosy, plump cheeks glowing. I think he is planning to tie himself to his luggage to make sure it goes with us.
O.P.’s face is frozen in sheer delight, as if he’s about to hear wonderful news in response to his proposal.
“Let’s go then?!” he questions excitedly. In the quick second that I look away to privately contemplate, I spot an Indian man’s leg become pegged under a moving car and his army-green luggage flies from his cart and hits the gravel. The white four-door car stops and reverses slightly, the victim’s leg is released, and no one seems to care. He gathers his dust-covered bags from the ground and limps away, waving his hand at no one.
I realize I need to make an executive family decision about this luggage, because although I am the child, I feel like the parent at this moment. They are here because of me. I owe them at least the appearance of bravery. But I am terrified.
I was thirty thousand feet in the air on the plane here, fourteen hours into our twenty-one-hour journey, when I experienced my first real moment of massive doubt about this whole thing. The plane, and my destiny, were already well in flight.
It all started with having to pee. I unbuckled my seat belt and shimmied down the aisle to the bathroom. I didn’t have far to go because I was only three rows away from it—the worst possible section to be in on an international flight. I kept my sweatshirt hood pulled loosely over my head, feeling a false sense of privacy. I was fourth in line among my fellow full-bladdered passengers. But the thing about this line was that there was no actual formation. Two beautiful Indian women draped in saris plus one Indian businessman in dress pants and a half-untucked shirt were gathered in the short galley way, arranged in no particular fashion. When I joined the congregation, they moved closely toward me, their eyes fixated on my face, their clothes kissing mine.
I read many travel books before leaving home, all of them touching upon the cultural differences between India and America in some way. Personal space, as they all described it, was not as important in Indian culture. This was the first time I experienced this truth for myself, but it most certainly wouldn’t be the last. One by one, the Indian passengers drew in around me, and soon five people were questioning why I was on this flight.
“I’m going for medical treatment that I can’t get in America,” I said, giving minimal details. “The nerves in my legs are damaged and it’s very painful.”
I had lost the energy to explain my condition in its entirety. Lyme disease can be complicated to understand and, especially in its chronic form, difficult to cure. It is caused by the bacterium Borrelia burgdorferi, which is most commonly transferred by certain types of ticks and, some believe, by mosquitoes, flies, and fleas. If the infection is caught early on, it may require only a short dose of antibiotic therapy. However, like me, the majority of people never find the tiny tick that bit them, see the bite itself, or get the bull’s-eye rash that’s commonly associated with Lyme. When this happens, and the infection goes undiagnosed and untreated, it can become incredibly dangerous, especially for those with weakened immune systems. The bacteria can attack the immune system, burrow in the bone marrow, hide and evade treatment, and destroy multiple body systems. This is called chronic, or late-stage, Lyme disease. That’s where I am.
But to this audience on the plane, I left it at the legs.
“Oh! You are so brave. It’s a rough city.” The flight attendant clapped nervously. “Actually, my mother had very bad leg pain. She drank tonic water and it was a success!” I giggled silently in my mind. Ahhh, if only tonic water really did the trick. But then I thought, Wait—did I try that? Tonic water cost seventy-five cents, and I was on my way to a “rough city” for a $30,000 medical experiment in the most vulnerable state of my life.
This talk of tonic water triggered one of my greatest fears: that there is something silly and uncomplicated that I’ve missed—the elusive, unturned stone. I have heard stories about Lyme disease patients who struggled for years, and then found a straightforward missing piece—something like vitamin B12 shots, a detox supplement, juicing, or an additional antibiotic to add to their regimen. It did the trick and then they were on their merry way to healing! Just like that. These are the stories that haunt me; driving me back again and again to the thought of What am I missing? It is this simple question that stalks my every move, doubling its force and persistence when I try to resist it. Why can’t my thankless body take one of the hundreds of things I’ve offered it and actually use it? But at this point, it’s been pretty well confirmed that that’s not going to happen.
In fact, it was only the year before this trip that I turned my life into Mission: Try-Everything. Because you just never know. The first thing I ever tried, the Carrot Juice Cure, caused my hands to turn orange from a beta-carotene overdose. All that juicing was colorful but not very effective. I then moved on to drinking cow colostrum via the brags of an online group swearing the early secretion of bovine breast milk was a miracle. One word for that experience: gross. I also saw various psychics and intuitives who gave me vague information like “It seems your legs don’t work” (thank you!) or offered cryptic messages such as “Your body is full of toxic oil!” (what?) and “You have a terrible relationship with your mother, yes?” (um, no). At one point, I had a session with a healer, whose specialty I never really figured out, who swirled his hands over me and talked to my body in a gibberish language. He seemed as broken and confused as I was. To this day, I still love all things metaphysical—intuitives, mediums, healers, astrologers, crystals, angel communicators, and palm readers—but it’s pretty clear that at that time I did not gravitate toward the most talented guidance out there. There was also the Master Cleanse (a.k.a. the Lemonade Diet), which has been around since the 1940s. For twelve days straight, I would drink lemonade only: homemade with cayenne pepper and agave. But several days in, I choked from accidentally sniffing cayenne pepper up my nose and called it quits.
After all that, it seemed stupid to not try the tonic water. Because, well, what if? That tonic water might be it.
On the next beverage round, I asked for a glass of it. I drank it with my fingers crossed, a superstition from childhood I still sometimes honor in times of great need. I waited. It did nothing. I still had electrocuting pains in my legs and felt exhausted as if I were a million years old. I hated to be relieved by this, but to find a cure on my way to India would seriously suck.
That is why, when I see my mom’s face in that ramshackle Delhi airport parking lot, blatantly unsure about our next move with O.P. and the white vans, I force my bravery. I am fueled by the confidence that I even tried one last thing (again!) on the way here. Whatever happens from here on out needs to happen. I commit to this for the foreseeable future and decide not to look back.
“Let’s go!” I tell O.P., confirming that we will indeed part with our luggage in a foreign land, at night—based on the promise of a man we met ten minutes ago, because he acted like it would be totally fine. I have not had any luck with prayers so far, but I close my eyes and say a short one for kicks: Dear Universe, please help make sure that our luggage meets us at our destination. Thank you and amen! If Nutech Mediworld hospital embraces the arrival of both my family and all our luggage tonight, I will consider it a miracle.
Mom and Dad cannot pile into the van fast enough. Once O.P. closes the door to seal out the chaos, we all collectively exhale, forcefully enough to signal cautiously optimistic relief.
“Shit,” my dad says with a laugh, breaking the silence, his big lovely belly jiggling like it does when he’s thoroughly entertained. Mom and I laugh too, because from the assumed safety of inside this van, things actually start to seem pretty funny.
O.P. acts as a tour guide, talking on and off for the entire bumpy ride into the night. He turns around from the front seat often, taking his eyes off the road. “So, here you are!” he declares. “You like India?” So far I only like it because I have survived it, I think. “Yep!” my mom chimes in, the perfect student, or maybe just startled with fear. The half hour of rough and rugged driving thrashes my digestive system and rattles my nerves. The van bounding over the uneven street sounds like falling rocks. We are thrusting in and out of traffic (how is there such terrible traffic at ten o’clock at night?), and the noise of honking horns is so constant that, after a while, it’s just a background roar.
“We’re here!” O.P. exclaims as we stop without slowing down first. We are outside a modern-looking three-story building faced with mostly tinted windows. I tilt my head to look up from inside the van. Directly behind us, van number two arrives, canceling the possibility that we’ll be dubbed the idiots who let strangers steal our belongings. At least, not tonight.
Climbing out of the mini minivan and into the mildly cool winter air, I hear at least fifty dogs wailing. Horns are angry and ambitious. People are walking and shouting to each other across the busy street. The sky is dark, but the entire city is high with energy. The smell of a fire has followed us.
This twenty-bed facility in South Delhi, squished between a small hotel and a bank with an armed guard stationed outside, will be my new home. The hospital’s entrance has a wheelchair ramp alongside the stairs, which we make our way up. We are greeted at the doorway by a group of smiling staff. It feels like we’ve arrived at Disneyland for a special event. The hospital, humble in appearance, looks clean, smells neutral, and is actually nicer than I had envisioned. The chairs in the lobby area are wooden and clunky, like those you might see in a doctor’s office where the furniture hasn’t been replaced since the seventies. The royal-blue cushions paired with the wooden frames offer an almost exotic, resort-style feel. The floors are shiny, freshly mopped and maybe waxed.
“Miss Amy?” one of the young women questions, edging toward me in a shuffle. She is dressed in a pressed white nurse’s outfit, her hair pulled back in a perfect bun. She is petite, with a tone that is quiet and kind.
“That’s me,” I respond, raising my hand just to be clear. All the other nurses, who are about her same small size and look to be in their twenties, are grouped around her just watching.
“I am Sahana,” the nurse says. I am bad with names and usually forget before the person is even done telling me. I focus hard and review in my head where I am so far: O.P. Sahana. Two is easy. “Ready for your room? We show you now.”
Mom and Dad are staying at a small bed-and-breakfast a few blocks away for the six weeks they are here with me. For the final two weeks of my treatment, I’ll be in Delhi by myself. This plan seemed fine when we made it at home, but I am, all of a sudden, nervous about it now.
“Can I take you to your new place?!” O.P. asks them, putting his hand out to offer them a lift. We wrap our arms around each other for a lingering hug, and they are gone.
Sahana and her gang of “sisters” (sisters is the term for nurses in India) lead me to the elevator, which delivers us to the second floor. Two, my lucky number. Well, twenty-two is actually my lucky number, because two twos are obviously better than one. But I take two when I need it most. Now, I need it most.
Through the walls in the corridor leading to my room I can hear patients watching TV. A few are mingling in their doorways and stop to smile. Sisters bustle about, walking around with blood pressure cuffs that are reminiscent of another era.
When we get to the end of the hall, Sahana points to the left corner room: my new home for the next two months. I enter, the girls following and observing my every move closely. As it turns out, my new home is a pleasant surprise. I take a quick inventory of the space. My room is decorated in bold blues; the walls match the chair cushions downstairs and the sheets are a more subtle shade. A plasma TV is affixed to the wall. Score! I have wired Internet—it will be slow, but definitely better than none. Email has been the only consistent lifeline to the world these past years, and I don’t want to lose it now. The hospital bed is smaller than my bed at home, but after sitting up in a plane seat for so long, it’s as good as a king-size at a luxury hotel. There is a small royal-blue fold-out mattress pad next to it that converts into a chair for extra seating. I have a million different lighting options, although when I flick them on and off, none of the switches correspond correctly to the closest bulbs. In the corner of my room, there is a mini refrigerator. On it are a loaf of bread labeled “brown,” Indian crackers, cereal, and bananas. There is a stack of sunflower-yellow-colored bowls, two forks, two spoons, and a knife. Next to it is an electric teakettle, more modern than the old-school stovetop teapot I have at home. Inside the fridge I find a box of milk labeled “soya.” At home, I eat mostly organic. Here, I don’t recognize the brands and can’t read the ingredients. It’s probably for the best.
After I inspect my room in its entirety, I go straight to the large window over the bed and peek out from behind the thick blue fabric roll-up blinds. From here, I have a perfect view of the wide-open main street. I see a monkey on the roof directly across from me chasing and jumping around for trash that is blowing about in the wind.
Stepping cautiously into the square bathroom, I am shocked into new territory. I’m immediately confused by the shower because it has no door, curtain, or lip. The floor of the shower is the same floor that extends to the rest of the bathroom. The toilet sits right next to this shower and the drain for the whole bathroom is in the middle of the floor. It reminds me of an outdoor beach shower that you have to wear flip-flops in, but this has the added awkwardness of the toilet. I can’t imagine how I’d use this without getting the entire bathroom soaking wet.
“It is not like your home?” one of the girls asks, perplexed by the amount of time I spend staring.
I smile and sit on the toilet to demonstrate. From this position, I reach over a few feet and playfully grab the detachable showerhead, holding it over my head. “You see, at home, I couldn’t pee and wash my hair at the same time.” They look horrified, as if this is something I will actually do now that I’ve discovered it. “Very different,” I say. I privately rename this combination the “shoilet,” because it’s a little bit of a shower and toilet sharing the same space.
“Rest. You need sleep,” Sahana instructs, now that our bathroom lesson is over. I nod. “Tomorrow, nine a.m., you go downstairs. You will meet Dr. Shroff. We will ring Mom and Dad.” I know I desperately need sleep, but there are so many questions: When will my treatments start? What will the protocol be? Did my parents even make it to their hotel? And, oh crap, if they didn’t, how would I ever even know?
When the caravan of sisters leaves, I am alone for the very first time in this unfamiliar world. Everything feels still and I am surprisingly at ease, except I can’t seem to ignore the strong smoke odor permeating my room. I begin to investigate for a short circuit somewhere along a wall. In my early twenties, I worked at a newspaper in the editorial department, and even though it’s almost a decade later, experiences in my life still sometimes cause story headlines to involuntarily flash in my head. Right now, it is: Girl Tries to Beat Incurable Illness, Perishes in Hospital Fire.
After no defect is found inside, I look outside once again. I see a barrel full of smoke, but no fire. It seems several men across the street are huddling over their burned-out bonfire to stay warm. The smell of the outside world is leaking in through my unsealed concrete walls. Looking more carefully, I can see light through the cracks where the corners meet and spaces where the windows don’t quite match up.
Climbing onto my bed, I sit erect, completely motionless for a minute, trying to fasten myself into my new reality.
I am not sure what to do with my first empty moments here, worried that if I stop for too long to think, I will be afraid. I feel like I should be freaking out, but I am somehow okay. I feel like being somewhere new gives me something new. Refreshed optimism, perhaps. Or maybe it will ultimately be only a distraction from the inevitable—that I can’t be cured.
The wailing from the dogs outside begins to grow louder and then retreats. I finally dig my crumpled pajamas from my suitcase and huddle in the bathroom to change, not confident that my room is totally private from the outside world. The morning is soon approaching, and if this bed feels as uncomfortable to sleep in as it is to sit on, it might come much too soon.
Unpacking my medications, I quickly cover the night table next to my bed. I can only fit on it some of what I need to tend to my high-maintenance body. I have various kinds of oral antibiotics that I take for the Lyme disease. I have a whole set of medications for the coinfections—additional infections from ticks that often come along with Lyme disease. I have good-bacteria probiotic pills to try to cancel out damage from the antibiotics, and supplements that help my liver detox. I have gallbladder pills to prevent gallstones—a side effect of one of the drugs. I have antacids to offset the gallbladder medication and a special drink to help flush my kidneys. I have horse-pill-sized vitamins for when I can’t eat. I have needles, syringes, and vials of antibiotic powder that need to be mixed with lidocaine for my injectables. All of this, to try to stay ahead of the Lyme disease and its symptoms, is a process reminiscent of the Whac-A-Mole game of my youth. As soon as I smack down one pop-up monster infection, virus, set of symptoms, or endangered organ, another appears out of nowhere. This is my life, a constant monster-smacking mess—so confusing and exhausting that I have spreadsheets to help me keep track of symptoms, dates, and intensity so I can accurately relay everything to my doctors. I think it’s pretty clear that the monsters have the upper hand.
As I sit on the bed in a cross-legged position and ten thousand miles away from home, with everything at stake, the feeling I had when I made the decision to come here returns to me. I need India. I still feel this truth in my bones. But all the reasons I think I need India will turn out not to be any kind of truth at all. India, with all its guts and glory, will take me, overtake me, undertake me, and painstakingly spit me out. It turns out that India will also love me, care for me, and cradle me in ways so magnificent it will be worth every mile.