“Wait till you go out there, baby,” my dad says, out of breath, eyes full of sheer amazement.
My parents have just walked the two blocks from their hotel right off the busy main drag, and into the safety of the hospital lobby. Daylight has brought not only them to me, but the blank page of the first day in my new world.
“Oh boy!” my mom follows cheerfully. “I’m shvitzing from crossing that main road! It’s nuts!” Despite it being the Indian winter now, an average of about fifty degrees Fahrenheit, she is indeed sweating. In one sentence, my mom has brought New York to India.
The hospital is located in Green Park, sometimes referred to as the lungs of Delhi, because it is near one of the largest green areas in the city. But I see nothing green here. While Green Park was described to me as a posh area of the city, it so far feels more like an area of LA that tourists are warned to stay away from. There is trash every single place I look. Instead of there being bins, garbage is piled up on the curbs—except there isn’t even really a curb. From my own wide gaze out the giant glass windows, which reach from top to bottom at the front of the building, I can see why Mom and Dad are so discombobulated. It’s a perfect view into total disarray. A cow is stopped in the middle of the road and halting traffic; people are stuck in the three-wheeled taxis known as tuk-tuks waiting for the cow to move; families of four are stacked on motorcycles whizzing by the tuk-tuks; groups of men use brooms to sweep up tornadoes of dirt caused by the motorcycles; and a monkey in a dress is running in the center divider alarmed by it all. Yes, a monkey. In a dress. We’re definitely not in La La land anymore.
Inside the lobby, there is loud buzzing and chattering that you’d expect from any busy medical clinic. Patients are checking in and out at the reception desk, sharing their latest improvements with each other and squealing with excitement. Locals pour in from surrounding neighborhoods. Dr. Shroff treats many of the children for free—some with physical challenges, others with autism and neurological issues. The only patients who are living at the hospital during their treatments are foreigners, like me, who have traveled from other countries—Dubai, Australia, England, New Zealand, and America. Although I did hear that a patient from Florida flew here in his own jet and is staying at the decadent five-star Taj Palace Hotel.
Nutech Mediworld in Green Park is Dr. Shroff’s second hospital and opened only this year. Dr. Shroff began her career as an infertility specialist at her original location, in Gautam Nagar, another area of South Delhi that is about ten minutes away. But when she developed her stem cell technology and started treating local patients, word spread and demand grew. To accommodate the onslaught of new international patients, she opened this second hospital, in a newer, more desirable building and location.
I am one of the most able-bodied people at this hospital. The majority of patients have spinal cord injuries and are confined to wheelchairs. I almost feel guilty that I can walk with no assistance, albeit some rocky maneuvering.
Before I can process too much of what I’m seeing, I spot the infamous Dr. Shroff. She is strolling our way in flowing, gauzy clothes, beaming with serenity, in no rush to reach our stuck-together family. She’s a mix of saint and rock star—Mother Teresa and Mick Jagger rolled into one. She spells BOSS. Dr. Shroff’s very presence demands attention, which she seems completely unaware of. She’s turning from side to side, observing peripherally. Her smooth black bob-cut hair is bouncing as she glides in pointed-toe shoes adorned with multicolored beads and sequins. She looks like she’s walking down a runway. I’ve been waiting to meet her for so many months, but suddenly I can’t adjust to the reality of it before she reaches us. She is one of the most controversial doctors in the world: to some, a miracle worker, and to others, a peddler of snake oil. She is the last doctor on earth who I believe can help me.
With each new possible treatment or doctor, I’ve wrestled not only with conflicting opinions but also with my inner voice. I am scared to use my intuition, because I usually can’t hear it telling me anything at all, and when I have, it’s often been wrong; but I’m equally scared to make random guesses. Choosing to travel here could easily turn out to be my worst decision ever. There are too many reasons to count as to why this might end up being true. But I’ll start with this: I am the first Lyme disease patient ever to be treated at this clinic. When I told my Lyme disease specialist at home that I was going to do this, he bit his lip and said, totally straight-faced, “I hope it doesn’t kill you.”
Doctors in America who specialize in Lyme disease couldn’t cure me, and here I am hoping a doctor who has never treated someone with this disease can. I feel the failure of this plan drop in my stomach and smash into pieces.
“Hello,” Dr. Shroff says quickly, approaching with a smile. “Please come.” Many people here, including some of the hospital staff, don’t speak English. Dr. Shroff’s is near perfect. She motions down the hall toward her office, and we all follow. We take our seats; I immediately sink deep into the chair cushion and feel it cradle me. Sitting down with Dr. Shroff is only a moment in time, but it weighs a million pounds. If I have led myself to the wrong place, a dangerous place, then there is really nothing left I can trust anymore. This time is different than all that has come before with doctors and treatments galore. There is more at stake—hope, finances, and, dare I say, my ego. I have agreed to blog about my trip on a health-care website that I’ve occasionally written for. This will make any potential win—or fail—a public spectacle. The pressure of it all suddenly feels insurmountable.
Dad is slightly reclined in his chair. Against his stomach, he is holding a Hindi newspaper that he can’t read. He has an insatiable curiosity. He loves people. He loves life. He is epically jolly. Except for when he’s not.
When I was ten years old, my mom’s dad—my poppy—was dying, and my parents said: “We are going to the hospital to say good-bye now.” We piled into our dark blue oversize van with two rotating captain’s chair seats, which my siblings and I fought over incessantly, and we set off for the good-bye. The navy velvet interior of the van made it feel like the funeral had already started, and I think it had, because Poppy was gone in a matter of days after that. It was not too long after Poppy died that my dad got sick. Or maybe depressed. No one ever really figured it out. He was so fatigued that he slept for days. He began to have episodes where he cried loudly and inconsolably out of the blue. None of it made any sense. He would be perfectly fine, the best dad in the world, telling his jokes, being my pillar of comfort—and then in a flash, his eyes would glaze over and he’d have to go to bed. Sometimes after only a few hours, and sometimes after long, sad weeks, he would spontaneously return to pure joy—a buoy in hopeless, rough seas—and he was back.
The episodes remain a mystery with no cause for their baffling arrivals or unpredictable departures. Over the years, doctors tested every possible diagnosis, checking them off the list one by one: bipolar disorder, depression, PTSD, chronic fatigue. All the doctors agreed to disagree. There were many theories, but no one could give us a definitive answer. Our family does the best we can to bounce with the ups and downs. But here, seeing the light in his face, his eagerness for life emanating from his entire being, I still find myself wondering, as if it’s brand new, how it’s even possible for someone so high on life to hit extremes so low. I’ve learned to go with what’s here today, though, and today he is good. Mom is sitting beside him, looking his way excitedly, and waiting for Dr. Shroff to kick off our meeting—the best sport ever.
“Welcome,” Dr. Shroff starts, through her friendly, fluorescent-pink-lipsticked grin. She is in her late forties, beautiful in a striking way, with giant brown sparkly eyes. After a long, silent smile, she gets straight to business.
Dr. Shroff is a bundle of contradictions, both everything and nothing of what I expected. She is sweet and kind, but blunt and precise with her words.
“Everything we do must be documented,” she says, thumbing through my medical records.
In one of my many e-mail exchanges with Dr. Shroff, she explained that the Indian Health Council only allows her to treat patients labeled incurable or terminally ill. Her patent-pending stem cell treatment has not gone through the testing and government approval that would make it widely available. Because of this, it carries great risks. For now, only those who cannot be cured by any other means are accepted. Lyme disease, at this stage, and in my case, is considered incurable. I am a person who the government says can take the risk. They agree—I am screwed, and therefore, government-approved stem cell worthy.
Stem cells are a special type of undifferentiated cells, meaning they have the potential to develop into many different types of cells in the body—to make muscles, organs, and more. They could be considered the “wild card” of cells, as they are so versatile. They continue to divide inside the body, providing an internal repair system for damaged cells. I need these cells and am relieved to be incurable, because that’s the only way I can get them. A ridiculous oxymoron.
“There is no Lyme disease in India,” Dr. Shroff says, “but I did have one Indian patient who had it. He probably contracted it in the US.” I wonder how this patient with Lyme is doing, if he or she is even still alive, but I decide against digging further. “Let’s just see what happens with you,” she says nonchalantly. My chest tenses at the reminder that Dr. Shroff might not know what she is doing with me. Mom, Dad, and I made an agreement before we left home, that if something didn’t feel right when we got here, we’d leave. I wonder if either of them is going to stand up now.
“We will get our own baseline and then compare later,” she says. Dad chimes in and jokes, “You need proof for your critics, right?” She smirks and looks up. “Oh, the world is my critic.” Based on my research about her, this is accurate. The scientific community around the globe is scrutinizing her.
“Nobody believes what I’m doing is real,” Dr. Shroff says, leading the conversation toward the specifics of her unique technique. “Just because they don’t know how I am doing this, they think it cannot be done.”
First, Dr. Shroff explains that her cells are pure human embryonic stem cells, meaning that there are no animal products used in her process. This is an anomaly in the world of stem cell technology. “None of my patients have shown any adverse side effects because it is pure,” Dr. Shroff says. I both like this and am suspicious of it as well, because based on my past experience, the promise of no side effects sounds impossible. Next, Dr. Shroff claims she is creating her stem cell lines in a way that no other scientist has been able to replicate: she is using and reusing a single embryo to create enough stem cell lines to treat hundreds of patients. “I only use one embryo for all,” she states with confidence, her pointer finger proudly displayed. Her technology involves using an original donated embryo over and over in its current phase, never destroying anything at all. “This embryo was given by a generous woman, who after conceiving her two children via IVF wanted to help others,” she adds.
Embryonic stem cells are a very controversial subject on their own, but add an Indian female doctor who says she’s doing something in a way that other scientists can’t figure out, and you have a firestorm.
When the average person thinks about embryonic stem cells, their brain may conjure up scary images of aborted fetuses, political protests, and religious arguments. But this is nowhere close to the reality of it. An embryo at the early stage during which stem cells are extracted is scientifically known as a blastocyst, which is only a few cells. The blastocyst is approximately 0.1 to 0.2 millimeters, the size of the period at the end of this sentence. Yes, that sentence you just read.
Unused embryos are discarded every day in fertility clinics. Britain’s Human Fertilisation and Embryology Authority (HFEA), which has recorded IVF processes since 1991, estimates 1.7 million embryos have been discarded thus far.
Scientists around the world warn that the biggest risk associated with embryonic stem cells is teratomas—noncancerous tumors made up of tissues such as hair, teeth, muscle, and bone. I have to ask her about this, even though I’ve read online that she says this is not a risk with her patients. Still, I do it fearfully, petrified of her response. If I don’t like the answer (I mean, teeth and bones?!), will I leave? I am trying to be responsible by being smart and assertive, but the truth is that I don’t think anything she would say could change my mind right now. Okay, except maybe teeth and bones!
“I’ve read that because of how you process the stem cells, there is no risk of teratoma tumors, right?” I squish my face in hope. “I keep reading warnings about them and I just want to—”
She jumps in quickly. “This risk is not so with my cells. These scientists are using mice for testing. They cannot know what happens in a human. How can they?” I don’t know and don’t answer. “By mixing embryonic stem cells with the genetics of a mouse, they are doing something unnatural. This is setting off the wrong reaction. The same would happen if we put mouse cells into our human bodies.” She reminds us that her stem cells are a purely human product, which is being transplanted into humans—and therefore, the body accepts it. Our conversation about mice and experiments feels ironic, because I seem like the real lab rat right now. But her explanation makes logical sense, so I let it go.
Next we talk about exactly how the stem cells might help me. The idea behind the treatment is two-part. By strengthening my immune system, Dr. Shroff predicts my body will finally be able to fight some of whatever infection I still have left, on its own. Up until now, my immune system has been so degenerated that it’s all been up to the various medications. The new stem cells will also help to reverse the years of damage done to my body from the Lyme disease: damaged nerves, tissues, organs, and more. But this is all theoretical, based on what we know stem cells can do. We don’t know what they actually will do. I am reminded of the words from my Lyme specialist now: “I hope it doesn’t kill you.” Dr. Shroff explains that the stem cells will keep developing, and working, for up to five years. So she says that even if I don’t see immediate improvement, there is still hope to look forward to. I am not sure how to interpret this—should I feel freed of some pressure to show immediate improvement, or worried that she is relieving herself of some responsibility? “There are no guarantees,” she says, and then moves on swiftly.
“Okay then. You will need tests so I get my own baseline. I do understand you’ve been tested thoroughly at home, but we’ll do them again. We’ll get those scheduled in the next days.” Dr. Shroff shows me a list of about fifteen tests, among them a spinal MRI, various blood tests including some special immune-function ones my doctor at home does, a “Doppler” (a.k.a. ultrasound) of my legs, a mammogram, and the list goes on. For the $30,000 I wired to her for the treatment—which, by the way, was the most frightening banking experience of my life—I get room and board at the hospital and all treatment included. Tests are extra. But I am comforted to find out that all the tests will amount to just $1,000. At home, an MRI alone is $2,500. I cannot believe the difference. While these costs may seem astronomical to those who aren’t stuck in the loop of the medical system, to me, they are a bargain. Even the $30,000 is a deal if it works. Each year, my family has struggled to pay the gargantuan price tag associated with Lyme disease treatment, which is often not covered by health insurance. If this is the last year we have to do that, I’ve just hit the jackpot.
“Let’s go,” she says. It’s time for the next part of the orientation tour! “We will go to physio.”
I am still processing all the information as we take the stuffy elevator down to the basement physical therapy room, called physio here. It’s a large room, dripping with cheery colors that tend more toward neon than primary—fluorescent yellows and brilliant blues that could blind the disease right out of you. Hindi rap music sets the mood, reverberating through the floor, up through my feet. There are other patients well into their sessions. Nyla, a young Indian woman who is rail-thin and frail, is getting this therapy for a heart condition. She doesn’t speak English, but smiles when we’re introduced. Brian, a twentysomething guy from Australia, is trying to regain use of his legs after a motorcycle accident. He dances with his shoulders and chest, the rest of his body paralyzed and lifeless. An older man, Bob, is using calipers (the Indian version of leg braces) to stand for the first time since he was paralyzed, admiring his accomplishment in the full-length mirror.
The room is busy—the patients and staff are laughing, some are sweating, and I am tired just looking around. I haven’t exercised in longer than I can remember. In fact, the last time I did physical therapy, I was too sick and weak to do anything on land so I was prescribed aquatic therapy—a.k.a. “pool school.” Five days a week at the physical therapy center, I climbed into the pool, four feet deep and a delightful ninety-four degrees. It was pure relief to my aching body. My pool mates were sick and mostly over seventy, except for the teacher, whose job it was to make sure we didn’t drown, and to direct us toward the proper way of doing leg lifts and shoulder shrugs. There was always someone in class cheating, which seemed a total waste of cheating to me. It was pretty much a chlorine melting pot of complainers: Gretchen, who hated her grown kids and had two bad knees; Tom, who hated Gretchen; and Sally, who drove fifteen minutes to get there and spent the first fifteen minutes complaining about her ride. I was not a fan of the group format. In fact, I had only one comrade: eighty-two-year-old Art, who towered over me (although that doesn’t take much) and was built like a linebacker. The first time I met Art, I kind of fell in love with him—which is awkward, because when you meet people at pool school, you’re both half-naked. He called our pool school buddies “a bunch of hoodlums,” and I agreed. He reminded me of Poppy, never taking himself or anything too seriously. Art sported a huge scar from his belly button ascending into the middle of his chest. “I survived some crazy shit,” he told me that first day in the locker area. “Almost died,” he said, as if the issue were no bigger deal than the weightless leg lifts we’d just done. “Then, after open heart surgery, they finally sewed me up, and I had the most powerful sneeze ever. Those damn stitches unripped like a zipper right up me.” Art laughed deeply, like he was hearing about his own ridiculous bad luck for the first time. Every day when we said good-bye, he’d tell me, “Wear your sweatshirt, kid. Things can change pretty fast out there when you least expect it. Life can be funny that way.” Still some of my favorite advice.
Here in this physio room, I am happy to see the crowd is mostly under seventy and no one is wearing a bathing suit. I heave a deep sigh of relief when I realize each patient has his or her very own physical therapist, and there are no group lessons! I am winning already.
Dr. Shroff introduces me to Chavi, who will be my physical therapist for the entire eight weeks I’m here. She is almost exactly my height, with long, jet-black hair, perfectly aligned teeth, and a round friendly face. She shakes my hand lightly and giggles.
“Let’s see what you can do. Fine?” Chavi directs, patting the bed next to her for me to lie down on. Every time she moves my legs even an inch, she smiles at me and says, “Fine?” People here use the word “fine” in abundance, just as we say “okay?” I’ve already caught on. They understand that “fine” means move on, all done, it’s all good, and a host of other things. It gets the point across for almost anything.
The truth is that I haven’t been fine with anything for a long, long time—my life, my body, or especially my legs. These legs that are supposed to keep me up have only dragged me down. Their message: You have no hope to stand on. It was early 2006, only two years earlier, that I wanted nothing to do with them ever again—my own legs, my mortal enemies.
My parents’ back bedroom, which used to belong to my older sister, had become an infirmary where my failing body and the fiercest part of my spirit were housed. Jay and I had moved in when we realized we needed help—financially and emotionally—to be able to survive this new life with my illness.
“You have to do it . . . pleeeease,” I begged, lying in the bedroom one evening. That day felt so long it seemed that three days had been crammed into one.
My eyes barely open, thrashing my helpless legs around hard in the tangled sheets, I wailed. I tried my plea again, with added determination. “Cut them off!”
Sitting on the edge of the bed, Jay stared somewhere beyond me. His emotional pain matched my physical pain, but he didn’t respond to me at all.
“Do it for me . . . you have to,” I sobbed. “I need you to do this.”
I don’t know what kind of woman begs a man to cut off her legs. I only know that I would have never imagined myself to be her. But somehow, in my desperate and daring state, removing my limbs seemed the only solution to end my unthinkable, atrocious, dire pain.
Searing, slashing, stabbing, burning, without warning. It felt like a villain from a horror movie was hammering nails into my legs, deeper and harder to test my ability for survival. This agony was caused by a rare form of neuropathy, which is, essentially, damage to the nerves. For months nonstop, I’d been taking eighteen narcotic painkillers in each twenty-four-hour period, yet they hardly touched this pain. The outer sheath of my nerves was unraveling, and doctors couldn’t figure out how to stop it. Life was a brand-new kind of impossible.
Removing my legs, I was convinced, was the only logical option. The only option left, really, to save me from the torture. I was fully aware of what I was asking—the seriousness of it, the grossness of it, the sadness of it—but that didn’t slow me down. This dramatic episode was not new in our bedroom, but it is the worst I will ever remember.
This man had helped me take baths and restitched my leg with his bare hands after a botched muscle biopsy, and was just as terrified as I was about my future. If anyone would get it, it would be him. He would see my logic, I believed, because I am a logical person and because there was no other choice. He would find solace in the fact that I didn’t want to end my life. I didn’t want to die. I was only asking for my legs to be removed. The only thing I needed was for him to do it.
Turning to me, he finally met my eyes and seemed to absorb what I was asking. He broke. A tear rolled out of each eye. The wetness of his face unexpectedly woke me into reality. I put a halt to my pleading, spontaneously and involuntarily, as if a wall with the word STOP moved quickly to meet me. Stop. Just stop. Stop it, I heard in my head.
“No,” Jay said, the tears coming faster and faster. He would not cut off my legs.
What I realized in that moment is that there are many things we do for love. We will forgo our lives to help another person go on. We will sit by and watch the demise of another’s lovely body, anchoring ourselves into happier memories just to survive it. We will tell ourselves that one day, soon, everything will be fine!, even though we know it probably won’t be. But there are many things, because of love, we just cannot do. His tears hit my calves, and for only a few seconds, I was grateful I still had them.
In a lifetime of moments, we accrue many ugly ones. It is these moments—the ones that immediately jump to mind in a mental review of our lives—that carry the most shame with them. This is not because we necessarily behaved badly or wrongly, but because we allowed our scariest human insides to show on the outside. The unfiltered-ness of ourselves seeps out. Jay was the person who witnessed the deepest and most desperate parts of me at the exact same time that I discovered them for myself. When there is another person to witness the ugly, you are forced to stare yourself down, right where you are—out in the wide-open, bare to those beside you. Those moments become a crack in your heart, a nail in your coffin, a smudge in your otherwise shiny past. Begging Jay to cut off my legs with his own bare hands will always be my most glaring queen of ugly in a timeline of many. His witness to my insides still shakes me as I watch Chavi twist my legs and measure my nonexistent muscles. Jay and I hardly speak anymore, but I still feel that day strung between us.
Here in physio, I am forced to face the legs I have felt so resentful toward and detached from. As I watch Chavi bending and stretching my deconditioned body, I suddenly understand. When you really love something, you have to be Jay. You have to say no to removing the parts that are ugly. You have to say yes: yes to acceptance, yes to the ugly, and yes to love.
When Dr. Shroff asks if I can get off the physio bed and stand, I do it. I own each foot as it hits the floor. These are my first moments of forgiving my legs, in all of their hideous glory. After years of wishing them away, I take them as mine, just as Jay did.
I try to walk in a line with my eyes open, then with my eyes closed. I fail horribly—veering to the left like a drunken sailor, without the hat or the fun of a drink. The left side of my body is full of bruises from the constant deviations when I can’t quite control my stride and accidentally bump into parked cars, unsuspecting furniture, or walls. This impaired balance is caused by decreased blood flow and oxygen to my brain and is a common neurologic symptom in patients with late-stage Lyme disease. Over time, it can cause irreversible brain damage. The symptoms include memory loss, sleep disturbance, fatigue, depression, and, as is on show here, wonky balance. I lean on a chair to catch myself and cock my head with a smile at Dr. Shroff. I’m taking this balancing defeat more lightly than usual because I’m hoping it will be fixed soon.
Dr. Shroff isn’t shocked, bothered, or intimidated by any of what I cannot do. She doesn’t compare me to the other patients, tell me I’m the worst case of this-or-that that she’s ever seen, say that this will be difficult to fix, or anything I’ve heard from doctors in the past. She also doesn’t compare me to my old self, because she has no idea that I was once a person who would hike every weekend, with stamina that my now twenty-pounds-underweight body could never endure. She makes no comments and shows no emotional reactions as she watches me fail, exercise after exercise. Instead of being self-conscious, I find comfort in her blasé observation of me and my dysfunction.
The first days in physio will begin the rebuilding of many things: my muscles and my strength, but mostly the slow awakening of my own self-acceptance—the subtle sense that something inside of me is already more okay than I ever thought.
“I’ll see you here tomorrow, fine?” Dr. Shroff says, jotting down a quick note. “Fine!” I confirm. She smiles at Chavi and me and walks away.
• • •
“ARE YOU READY?!” Dr. Ashish asks with almost a song, holding the golden needle with a dose of stem cells in his sturdy hand. I am surprised at how fast things are moving here. India does not allow for gentle acclimations. Everything is rushing toward me. I just got here yesterday, am admittedly still slightly worried about tumors, and am jet-lagged beyond recognition. I am not by any means ready. But I agree because it is both too early and too late in this game to not be ready.
Dr. Ashish is buoyant. His glasses magnify the excitement in his eyes as he gives the needle the attention it deserves, holding it to the light and beaming at it proudly. It is already time for my very first dose of stem cells and apparently Dr. Ashish is The Man when it comes to this department. Following him is a gang of sisters to assist. I’m excited! I’m hopeful! I am nervous this could kill me!
My parents are sitting in the corner of my hospital room, Dad aiming his camera at the significant moment that is about to occur. He bought a new camera for this trip and has three different manuals and six lenses laid out in front of him. He tells me that he is using both the constant shooting mode and the filming mode. He has prepared to capture this momentous occasion in every way possible. Dr. Ashish is impressed. “Isn’t that clever!” he says. My mom is overwhelmed with emotion, lips pressed tight, as if she’s about to witness a birth. She could care less about the camera’s advanced functions.
“We are doing a test dose only to make sure there is no reaction,” Dr. Ashish says. He delivers this news with a look of concern, brow furrowed, and I feel myself worry. “We are looking for a rash at the injection site,” he finishes. A laugh breaks through my lips. After all I’ve been through, a rash would be the least of my problems.
There are three parts to making sure these cells have the best chance, Dr. Ashish explains. “They will be influenced in part by physiotherapy, part will be your mind and spirit, and the rest will be how your body reacts on its own: fate.” He is counting the parts off on his fingers as he speaks. “Your attitude, nurturing, and positivity must be there! You have an approximate twenty percent influence,” Dr. Ashish specifies deliberately with great intent.
“These cells are immature and need to be trained to function properly. Embryonic, if you will!” Dr. Ashish waits for us to laugh at his joke. I feel Dad zoom in on my face with his super-lens.
“I understand,” I promise. I don’t take it on, but I do take it in. “These cells will have a good home.”
I feel a twinge of emotion in my chest and a sting in my throat like I might cry. I hold back. I can’t wait until he does the injection and they are mine to keep.
Slowly, Dr. Ashish wipes the inside of my right bicep to prepare for the injection. “This will be a prick,” he explains. I feel my dad zooming in from behind the camera. Dr. Ashish finally, slowly injects a syringe full of clear liquid into my arm. “Fine?!” he asks. I feel nothing and am slightly let down by how fast the moment passes. There is no rainbow that appears over me, no Oompa-Loompas who come out singing, and no confetti that falls from the sky.
“Fine!” I tell him.
“Now, we cannot know exactly where these cells will go!” he says. “They will find homes in the tissues where they are needed to begin regeneration. Very intelligent.”
I hope this isn’t like when you lose weight and try so hard to direct any fat-burning to your hips, thighs, and stomach—but your body decides to target it all to your boobs. I send a silent message to the stem cells in case they are listening: Ignore my boobs. Please go directly to my legs.
These cells will be administered daily, first by injection like now and then by IV so they can give me larger doses. As he leaves, Dr. Ashish gives me a list of directions: eat more than normal, don’t do anything that might harm the stem cells, and get plenty of rest. I am already nervous that I’ll tilt the cells the wrong way or something and screw this up. This treatment has to work.
I lie perfectly still and try to settle into the moment, listening to my parents’ comforting chatter in the background, but the rambunctious street below is roaring. I picture it celebrating with me. India is calling me out of my room, out to meet my brand-new city.
Two extra Percocet and twenty minutes later, the three of us are jammed in the bench seat of a tuk-tuk for a windblown, loud, wild ride to a local market. When I was growing up, we would set off on family drives with no predetermined destination, sometimes getting lost in exploration. As we kids started to get nervous about being in the middle of nowhere, my dad would lighten the mood and say, “It’s just a zoomy ride!” But this ride has been a zoomy one from the start and Dad is holding on for dear life. I guess a zoomy ride is not as fun when you’re not behind the wheel. This open-air cart feels like it could tip every time it turns a corner, and none of us know our way. The sky is black, full of soot, as if a chemical storm is brewing, and the only discernible marker of where we are is the sun behind it, which is a vivid blood orange.
The market has the look and feel of a traditional rural village bazaar. There are rows of colorful stalls squished right up next to each other, arranged around a dusty courtyard. Children hustle beaded necklaces that hang from their arms, men sell roasted sweet potatoes, and women chat. Every woman in India is draped in gorgeous fabrics and jewelry, with perfectly done hair. I am wearing jeans, a hoodie, and a backpack. None of me is sparkling, shining, or shimmering.
The market allots stalls to craftspeople from different parts of India on a rotational basis of fifteen days, so there is always something new for visitors to marvel at. Inside, people are busily shopping for handicrafts and the vendors call us into their stalls as we meander, offering us a variety of things they are convinced we need.
“Hello, ma’am! You must see my stepstool!” one woman hollers, stepping up and down from it repeatedly as if it’s the perfect makeshift exercise stair-stepper. Another lady, holding a giant men’s T-shirt, calls to me: “Ma’am, this shirt has been waiting for you! Take a look, ma’am.” I am overpowered and underprepared for this experience. There are people coming at me from every direction. When I turn around to find my parents, I see my dad playing a flute in front of the next booth—a crowd of Indian families with children encircling him, jumping and cheering. This geeky and totally charming American is the most popular attraction at the market.
I kindly say “No thank you” to several different food vendors for what feels like at least four hundred times. The authentic food from various regions in India smells . . . interesting, or spicy, or something that I can’t really identify. A sweet older lady urges me to try the momos from the hilly state of Sikkim, India. Momos are a South Asian dumpling, often filled with onion, garlic, and coriander. I’m tempted, but I’ve been warned against eating the street food here, even though I probably have enough antibiotics in my system from treating Lyme to kill any foreign invader—well, except the Lyme, which seems to survive everything and anything.
As I roam through this market, it is all brand-new. Here, I am an outsider with the unanticipated relief of already not fitting in. I don’t even have a chance of doing so. No one expects anything from me, which makes me less aware of how bad I feel—the shakiness in my legs from fatigue, pain contracting my entire body, and my heart beating at what feels like twice the normal rate.
In the days after I first got sick, and when I was trying hardest to hang on, to both my legs and my sanity, my friend Mandy would drag me out to the bar to watch football with our group of friends. I sat at the table and chased my painkillers with beer. I tried to be the girl I once was and the girlfriend Jay had signed up for.
It was usually not long before I ran out of patience for the struggle it was to survive outside the house, but I continued to do it. I am still not entirely sure why. Either I recognized that practicing life, even when you feel shut out from it, is an essential part of not completely losing your footing in it—or I was determined, despite my lack of ability, to still be who I wished I were. This practice felt both simultaneously healthy and also like an enormous self-imposed extra pressure.
In those days, it was difficult to identify how I was really feeling because as I’d always been, I was most concerned with how everyone else was feeling. My worries about how my being sick was affecting my family and my friends were pulling me apart inside. I was, in many respects, desperate to stay in the game and show the people around me that I was fine. But what I really wanted to do, and very much needed to do, was curl up in my bed, guilt-free. I spent my life oscillating between two realities: a force who was drawn to taking care of and pleasing others; and a person who was constantly making failed efforts to say a hard-and-fast no to things that I kept saying yes to: social obligations instead of the copious amounts of alone time I craved, helping people when I was drained myself, and generally forcing myself to be whoever I thought the world needed me to be. Either I was never aware of what I needed or I was willing to forgo it at all costs. Probably both. At that time, though, the pressure of all I was trying to keep up with was not only causing inner turmoil but also crushing me further into physical decline.
Here, without my own or others’ attachments to who I was, am, or should be, I can be anything. Here, I am nobody. I am new again—free, just as I am.
After a loop through every aisle of the market, I circle back to a booth selling hundreds of elephant figurines—made from wood, clay, and metal, painted in bright rainbow colors. Elephant statues of all sizes are a common sight in India, strong symbols of wisdom, good fortune, new beginnings, and success. They are especially prominent in the form of the Hindu elephant-headed god Ganesh (or Ganesha), who is said to be the remover of obstacles. I see them prominently displayed in the hospital lobby, in the windows of shops and restaurants, on the steps of temples, and sometimes on the side of the street where they don’t belong to anybody at all. I feel like I need my own little elephant—a declaration of overcoming obstacles. I spot one just a few inches high, staring right at me. She is firmly planted on all four feet, her body painted in blue, orange, pink, and green, with her trunk shooting up toward the sky in unwavering confidence. I buy it with the help of two friendly Indian women who teach me how to bargain; the shopkeeper wraps it in tissue paper, and I walk off proudly with my very first Indian souvenir.
As we exit through the gates of the market, a woman and her baby follow us, asking for money. They trail for blocks and blocks. I try to continue walking, ignoring the constant calls and tugs at my heart, but they see through me and call directly to the natural-born saver and obsessive-compulsive rescuer at my core. I empty all the coins from my pocket, which feels like not nearly enough, and without notice five more beggars appear out of nowhere, telling us different stories at once: they need food for their baby, mother, brother, dog, or goat. They must have a secret code for Hey, come quick because we’ve got a sucker on our hands.
My first full week here is much like this first outing. Everything is moving lightning fast and none of it is familiar, but I am okay anyway. I am completely calm, present, and surprised at this comfort I feel in my new world, and even in my own skin. Each day, I get my morning stem cells either by shot or via IV. Chills flood through my lower body like sheets of rain. I imagine the cells fixing every inch of me. After my stem cell dose, I go to physio, where Chavi cheerleads me through even the smallest accomplishments. I tire after five leg lifts, but she is still proud. Some afternoons I rest, and some days Mom, Dad, and I sneak back out onto the streets when I feel well enough. The sisters love to see what treasures we come back with so they can determine whether we got a fair bargain. I lay the items out on my bed and they examine each carefully, either with pleasure or great disappointment. I now have a new dress (“Smart!” they say, which means fancy here), dangly earrings (thumbs down, as they tell me cheap jewelry here is full of lead), and a small terra-cotta Ganesha figurine (they approve).
Having made it to this point, I do not have any desire to change my priorities or wishes about the future. I still don’t want anything grand or spectacular for my life. I long to wake up in the morning and get out of bed without aching in the deepest parts of my bones. I want to have enough energy to do more than one errand at a time. I want to roll over without excruciating pain following my every move. I want to travel without worrying about taking an entire suitcase for medicine, and having to arrange wheelchair service. Mostly, I want to feel strong enough to play with my two-year-old nephew, Zach—who has Lauren’s shiny brown eyes, her husband Craig’s patience, and a heart full of joy. He is the first baby in our family and the little light of my life. I want to be fully engaged in life with him.
I often look around and wonder what it would be like to feel healthy again. I never realized, until I was without it, that health is not a state of being or a goal to be attained, but rather a distinct feeling. Chronic illness does not delete who you are, it covers up who you are. It lays upon you hundreds of pounds of useless weight, crushing something deep inside. Being sick does not change the person you are—but it does make being that person a whole lot harder. For now, the feeling of health is elusive and something I can only imagine; but it is not something I’ll ever give up on finding.
When dusk arrives each night, smoke floods the grayish-pink sky and erases the receding sun. I am hypnotized listening to people chant from the Sikh temple at the end of the street. In my ocean-blue room on the other side of the world from all that I know, I am both wildly chained to my circumstances and also freer than perhaps I’ve ever been. If I could be doing anything in the world right now, there is nothing I’d choose over this. Absolutely nothing.
I feel full of life in a new sort of way. My emotions seem slightly closer to the surface, a place they do not normally sit, forcing me to acknowledge the bigness, hopefulness of what is happening to me. If I could freeze moments in time, these would be them.