I am lying facedown in a hunter-green gown on a long, narrow table. Huge round lights that hang from the ceiling are glowing over my body. My arrival at Dr. Shroff’s other hospital in Gautam Nagar came after a wild ride through the city and ended in a dusty alleyway blooming with brightly dressed children at play, wandering dogs, and men pushing carts full of papayas. I have been moved to Gautam Nagar because the Green Park hospital doesn’t have an operating theater.
A heater is blowing gentle warmth into my face while three medical assistants stand at attention by my side. I am shocked to see that one of them is the handsome, cheerful O.P., who picked us up at the airport almost two months ago. Apparently, he is a jack-of-all-trades. I balance my happiness at seeing him against the sobering fact that my airport greeter is going to help during my surgery. I am relieved to find out that this is his real job. Picking up patients from the airport is only something he does in his downtime.
Dr. Ashish enters the room wearing the universal operating room attire: baggy mint-colored scrubs and a surgical mask that covers most of his face. I can see the smiling expression in his eyes. He’s completely relaxed as always, but looks even more so since he’s not in his usual dress pants and button-up shirt.
It’s time for my big moment, my grand finale—The Procedure. The Procedure is a common term around Nutech and refers to the injection of millions of embryonic stem cells directly into the spine.
The hospital is always abuzz with talk about who is getting The Procedure and when. This way of administering stem cells is highly coveted because patients often see dramatic results afterward: a notable boost in strength, moving fingers or toes that didn’t move before, and increased stamina. It is mostly used for patients with spinal cord injuries in order to direct the stem cells directly to the area of injury. But once in a while, Dr. Shroff and Dr. Ashish will have another type of patient they think could benefit, and schedule them for one. Today, I am one of those lucky ones!
Even though all of us are so grateful for each and every stem cell we receive, it’s hard to avoid being greedy about tomorrow’s dose. When it comes to stem cells, there is never too much of a good thing. We discuss treatment schedules, comparing who gets what and when, and are disappointed when we hear that someone else has gotten more than us. We are kids on Halloween night sizing up our sacks of candy. To a stem cell junkie, The Procedure is an overflowing plastic pumpkin bucket full of extra-large chocolate bars.
Dr. Shroff and Dr. Ashish are not sure exactly how much the Procedure will help me, if at all. What they hope it will do is empower my lower body even more before I leave in less than two weeks. But since I’m the first Lyme disease patient they’ve actually treated, we never really know what my reaction to any of the treatment protocols will be. This is something I try not to think of too often.
My pink-and-orange-striped fleece pajama pants are pulled down, midbutt. Dr. Ashish tilts the operating table so my head and upper torso are tipped down toward the floor. The table now feels more like a balance beam than anything else. I double-check with Dr. Ashish that I won’t slide forward—and off. “No no!” he says, laughing. I wonder if I’m the only one worried about this. One of the sisters places her hand on my butt to secure me, and I convince myself that, if she had to, she could catch me by one cheek if I should slip.
Dr. Ashish feels intently for the right spot in my spine and injects a local anesthetic at my tailbone. It hurts, but I know it will be over soon. A few minutes go by and the anesthesia sets in. I am remarkably calm, but one clear thought does cross my mind: Is it okay to let them do this? I once had a test done at home where fluid was removed from my spine to be analyzed, but maybe I should be more cautious about allowing someone to put something into it? In another country? Where we don’t know how I’ll react?
The thoughts of panic are too late as I start to feel a deep ache and an intense pulling in my lower back. I wince, and Dr. Ashish tells me he is pushing the first syringe full of stem cells into my spine. It’s happening! I can’t see his hand, but I feel his arm is steady as an iron rod. I breathe deeply, eyes closed, while I try to inhale the new cells into me.
I feel them being infused. A weighted sensation quickly coats my sacrum. If I knew what it was like to have a gorilla sitting on me, I imagine it would feel like this. I wiggle my toes to comfort myself. I know nothing is wrong, but the feeling is so strange that I want to check that everything still works. A lot of my new friends at the hospital are paralyzed, and I think about them now. I came here feeling my legs and I want to leave the same way.
Pressure rises up my spine as the second syringe of stem cells is slowly injected. I imagine the red line in an old-fashioned thermometer heating up rapidly. But it soon stabilizes and holds still in one place, about halfway up my rib cage. I am giving Dr. Ashish a play-by-play of what I’m feeling as he explains what he’s doing.
“Good, good,” he keeps repeating. “Verrrrry good.”
My right leg and foot start to tingle as the stem cells reach them. “My left leg doesn’t feel quite the same as the right one,” I report to Dr. Ashish. He slowly tips the table to the left, and almost instantly, that side floods with equal sensations. I imagine my spinal cord now evenly coated with stem cells, thick like molasses. Gauze is placed on the injection area, and it is over.
Within minutes, O.P. helps me roll over onto my back and moves me to a gurney. As we pass through the double doors that lead to the tiny gated elevator, I am totally and completely overwhelmed with emotion—pure contentment. I look up to see a sign that reads LABOR AND DELIVERY and remember how this hospital was originally home to Dr. Shroff’s infertility practice. It is the right place for new beginnings.
From my recovery room, I hear kids running and jumping in the school playground next door. The sound of their laughter is louder than the traffic. The purple curtains swing in the light breeze. It is finally warm enough to have the windows open.
Bricks have been placed under the foot of my bed to keep the top half of my body tipped down toward the floor, mimicking the position I was in on the operating table. “We lower your head toward the floor,” O.P. explains, “so that gravity will help some of the stem cells to travel toward your brain.” It could use all the help it can get at this point, I think. O.P.’s final words before he leaves are: “Stay like this for five hours, and then we will slowly lift you.”
Within one hour, I have to pee and my appetite is raging.
The TV is small and far away from the bed, so I don’t bother asking any of the sisters to turn it on. There are no English channels or Internet at this hospital, not that I’d be in a position to enjoy them anyway.
When Dr. Shroff comes to visit a couple of hours later, I beg her for food. “I will send something,” she says. A few minutes later, I am lying flat on my back, but am somehow managing to funnel my favorite spinach chicken and yellow dal into my mouth. I am now not just eating Indian food; I am devouring it. This is a contact sport. Sauce drips from the corners of my mouth onto my gown, but I don’t ease up.
Five hours go by s-l-o-w-l-y before I am finally allowed to turn on my side for an hour. Once I conquer that with no dizziness, I am allowed to sit up. After I do that successfully, I have completed all phases of The Procedure. The only thing to do next is let it work.
It is after dark when I’m driven back to Green Park, my lower back achy and still bandaged up. No position that I choose feels comfortable, but I try to focus hard on all the potential of my new stem cells. I imagine them as sparks that are igniting throughout my entire body, celebrating my last hurrah of healing here.
I cannot believe that I will be departing Delhi soon. I am the same person who arrived here and yet am so vastly different. The pounds of heaviness have been lifted from my being and bright new light has flooded into me. India has done this for me as I think only India could. Because it is here that I’ve learned it is possible to be free wherever I am. I am by no means perfect at this, but perfection too is something I am learning to be free from.
I search for some way to express my deepest gratitude to all who helped make this happen. How can I thank my two doctors here in India for this experience? How can I repay this country that shook me to the core but still didn’t let me crack? How can I express gratitude to my parents, my family, and my friends who said “you’ve got this” when I wasn’t sure that I did? And finally, what do I say to my own spirit, which helped me survive this when it felt so impossible? The answer comes to me: I can live. I can leave India and I can just live.
Dr. Shroff has suggested I return in six months for a booster treatment of stem cells, and I cling to this. Although I’ll be here for only three weeks next time, I find some solace in knowing I’ll be back. This is not something I expected I’d feel, especially when I think back to being that girl who refused Indian food, couldn’t get through the day without tears, and thought every whiff of smoke in India meant that there was a fire.
I have become attached to this city now—its kind souls, the simplicity of my life here, and the spark of myself that I feel walking through the streets, even in the face of some very harsh realities. I might even go as far as to say I’ll miss everything here—well, everything except the overzealous honking of endless horns.
The truth is, I am also afraid to go home. I am afraid because going home means having to embrace the complexities of life once again. Here, my home is my tiny hospital room, my food is already chosen, my friends are built-in, and my life is self-contained in this neighborhood. There are no big questions about life to answer, no grand plans to be made, and no expectations to rise to.
I am also worried about being without these daily injections of stem cells. I have spent years challenging a disease that, despite some triumphs, has left me always wondering what will be. It’s ironic that no matter what is going on, whether good or bad, I always feel I’m a stranger to my future.
In spite of missing India and wondering what will follow my departure, I am also grateful to be near the end of my stay. I want to brush my teeth with tap water, know my clothes will come out perfectly clean after being washed, and see the faces of those at home I love so much. There is nothing I want more than to kiss Zach’s plump little cheeks until he screams.
The last weeks here in Delhi become like the last week of the school year—when you can’t focus on work, because the fun things are constantly calling your attention away. I spend every minute I can out at the lively markets, strolling through the broken-up paths of Hauz Khas, and gathering my last moments in the city’s playground.
The feeling of health is still with me the week before my departure. It is still with me, because now, it is me.
Two days before my flight home I begin to pack, but it is the kind of packing where you just shift things around so it feels like you are doing something, even though nothing is happening. It doesn’t matter to whom or what I have had to say good-bye; I am not good at it. I think maybe ever since Poppy died, I’ve been allergic to good-byes.
The hardest good-bye I ever said was the day in 2007, only one year earlier, when I said it to Jay. It was one of the biggest, scariest, leaping decisions of my life.
Despite my reluctance, Jay and I had recently bought a house with the generous help of my parents, and, to go with that new house, had adopted an adorable but wildly untrained four-month-old Rottweiler puppy. Because when things are already hard, I like to complicate them even further. Every day of that first summer in our new home, we lounged by the pool and sipped beer on the patio, watching the pink sunsets over the mountains behind our house. We painted the grand wall in the living room pinot noir red and hung a giant flat-screen on the wall. If you were looking in from the outside, it would look like everything was great. But the biggest lie that we tell ourselves is that everything is great It’s great! Really, I’m great! Life is great! Our relationship is great! We can lie to other people for a long, long time, but the clock on lying to ourselves runs out a whole lot faster.
The real story was this.
It had taken a long few months after the infamous “you’re fine now” Mayo Clinic trip to realize that no amount of physical therapy was going to cure me, no matter how intent I was on making it so. I was still sick. The pain and weakness was a slightly lesser version of before, but only thanks to a new medication. I could drive myself. I was gardening when I could. And I was living some kind of life, even though what I had been through, and was still going through, made my entire world feel like I was trudging through thick mud.
It was not only breaking Jay and me individually, but our relationship too. What had started as warning signals that we weren’t going to last had now become giant flashing neon signs. It was officially clear that the couple built on fun was not made for the life we had. He was telling me less and less about his life, and shutting me out more. I was doing the same. Sometimes we’d sit and watch TV and I could feel his resentment just billowing toward me. He made little comments and digs, and it was obvious that he wasn’t happy. Sometimes it was more pronounced when he drank, but it was always there. One night while Jay and I were walking home from our neighborhood bar, he deliberately and forcefully shoved his shoulder into mine. It wasn’t an accident and he didn’t offer an apology. As I stumbled and then recovered, he just kept walking. When I asked him why he did that, he begrudgingly said that I was in the way.
Maybe his angst toward me had been there from the start, covered up most of the time with the fun we used to have; and maybe it had only grown with all we had been through, a life that he never signed up for. We tried to hit reset all the time, with date nights and promises of better communication; but our attempts almost always ended up in fights and more misery no matter what we did. The more we seemed to fall apart, the harder I pushed myself to be more perfect—I made sophisticated meals, tried to be more fun and spontaneous, and acted unbothered by the upsetting things he did or said. Maybe I did this in order to fix us or maybe it was to ensure that whatever happened to us wouldn’t be my fault.
What I eventually discovered is that there are two ways that human beings move on from things that our souls know we need to be finished with. Either, a) we go of our own accord, making decisions that rise from deeply centered conviction and confidence; or, b) we go kicking and screaming, because despite all signs that point us to the viable option of going gracefully, we can only go when we have to go.
But I had mostly only known one way my whole life, and this time was no exception. If I had acted on any of my gut feelings about leaving Jay before then, it would have been some version of going gracefully. But I did not act on them, because at that point, I was convinced that I didn’t know what to do.
“If you don’t know, you know. Just trust your gut. It’s that simple,” my always sensible brother once told me when I begged him for relationship advice. But for me, it wasn’t simple. “I don’t know” had become a very good cop-out in my life, and an escape from many things: making hard decisions, hurting people’s feelings, and having to figure out what was way down inside. Ignore and it does not exist. Everything is great.
I have always loved the idea of trust your gut and you already know. But what do you do when your gut is so damn good at hiding everything from you? I realize now that I probably always did have the answers. I was just not yet ready to tell myself the truth. Because telling yourself the truth is hard, but acting on your truth is even harder.
Jay and I had each been to therapists in the past, but we’d never gone together. So when Jay suggested we go to couples therapy, I agreed, even though I think a part of me recognized that it would only prolong what was already on the horizon.
Diane, our middle-aged and cheery therapist, spent the first five minutes of each session telling us about the joys of new motherhood with her adopted baby boy. In our sessions, I’d complain about Jay, he’d complain about me, and Diane would help us complain in a productive way. Using a ball of yarn, she would make circles around each of us, marking visual spaces in which we could safely express ourselves. I held back tears and struggled to speak my mind, sometimes waiting all week to say things I could only do with the safety of Diane and my circle of yarn. “Nothing I do ever seems good enough for him. . . . I’m just not the person he wants me to be. . . . It feels like he gets mad at me for everything, and is resentful toward me for being sick.”
Jay, when prompted by Diane to respond, would always be loving, understanding, and sexily self-aware. Nothing pairs with a bad boy better than emotional intelligence. Listening to him talk about us always made me doubt my own feelings. “But remember how much fun we had at the zoo last weekend?” he’d ask me, the question tinted with amnesia. And “Things really aren’t that bad. There are still many more good times than bad,” he’d assure Diane. If our relationship were a trip to the county fair and each of us were asked to recount our experience of it, I’d remember the whole picture, including the exorbitant cost and long, arduous lines. Jay would remember only the thrill of the rides.
About two months into our adventures in couples therapy, Jay got stuck at work and couldn’t make it to our session. I decided to go anyway. I heard about the new words Diane’s baby boy had mumbled that week (“Mama! Ba ba! No!”). When she asked me how things were going, I told her the more transparent version of what I said every week in front of Jay. “I’m not happy. . . . I can’t be myself with him. . . . I love him and am so thankful for all he’s done, but this just doesn’t fit.”
“I have to tell you . . . you are playing the victim,” Diane said matter-of-factly as I sat alone on her couch made for two. “You know, you don’t have to stay,” she went on. “Every week you’re upset by the same types of things, and rightfully so. But this is who Jay is, and if things aren’t changing, you don’t have to stay. You get to go.”
I was stunned into silence and a little bit angry. This isn’t my fault! I’m the sick one, the hurt one, I thought. It’s not that easy to go!
Playing the victim. Diane’s comment sank into me over the next few days. I didn’t know exactly what it meant, but I somehow felt her words as a secret truth of mine. I knew in my heart that we really didn’t fit, and I really did want to go. But a voice was screaming Not now! in my head.
He’s been so supportive. Not now.
He’s my best friend. Not now.
It’s not his fault. Not now.
He can’t help who he is. Not now.
You are sick. Not now.
He loves your family. Not now.
Maybe things really aren’t that bad. Not now.
A week after my solo appointment with Diane, the tension in our house was combustible. The things that were already bad got worse. The pressure I felt to get better, to save our relationship, to be the person Jay wanted me to be, was breaking me. Then one day a series of events unfolded in such a perfectly disastrous way that all my wavering disappeared.
Based on some hunches and other terrible feelings that drove me to become that crazy person I never wanted to be, I became heroically stronger than Jay’s password-setting skills and broke into his e-mail account while he was at work. Not my finest hour, I know. I looked through this window into his life with a sinking stomach. What I saw was not the loyal Jay I knew.
And for the first time ever, something inside of me whispered, Now, now.
I called only three people when I decided to leave. These are the people you call when you sound the alarm for your own life—these are your “fire people.”
“Daddy, I have to go. What should I do?”
“Call Jay at work and tell him,” he said. And then, “Come and stay with us, baby.” I heard my mom next to him, trying to figure out what was going on. It felt like my parents, who now lived nine hours away, were on the other side of the world.
“Melissa, please come help me pack.”
Melissa and I have been friends since we were twelve years old. She makes the best funny faces, but appears in two seconds with all seriousness if you ever need her in a crisis. About a year before this, Melissa had called me to help her with some rescue kittens she took in. “I know this is gross,” she said when I arrived, holding up cotton balls in one hand and a kitten in the other, “but we have to stimulate their anal glands.” Even though we laughed through it, I promised I’d get her back one day. So when I called her, I think she was comforted to find out it was only to pack.
“Jay, I have to go.”
This was the hardest call, because he was still one of my fire people and also my best friend. All he said was “Okay, Ames” in a quiet monotone voice. I thought I heard relief, but I didn’t question it.
There were things I always knew about our relationship and things I never knew. I always knew that Jay had the most tender, loving, sensitive heart. I always knew how I deeply loved him. I also knew, although it took me a long time to realize, that the hurtful things Jay said and did were not my fault. Like me, he had his own cracks.
What I never knew was that none of that mattered.
I never knew that there was only one thing to know, which was that I couldn’t be me around him. It didn’t matter why that was true; just that it was. And I never knew that while someone might be your very best friend, the person you love, and the person that you really really really wish fit, you might still have to go.
Melissa and I packed only what could fit in my super-cool vanilla Dodge Magnum, which Jay had helped me trade for my not-so-cool green Ford Explorer. Then I explained to the dog why I couldn’t stay. Bob, with his sad Rottweiler eyes and his stout stature, stood there, ears back, whining as I closed the door behind myself. Making the decision to go is hard, calling your fire people is big, but the moment of truth actually comes when you tell the dog.
I made it only two hours north in my overpacked car before I realized the hugeness of my decision and couldn’t drive anymore. I stopped at a hotel, checked into a cozy fireplace room, and climbed into bed with my shattered heart. It was 6 p.m.
I cried until my eyes ran dry. I called my parents. I tried to avoid texting Jay, which I was not so great at, so I locked my phone in the glove compartment of my car. I took a bath, wishing for it to wash away my old life.
The next morning I continued on to Mendocino, another six hours up the California coast. I can’t tell you how I got there, though, because it seemed like the car just drove itself. Surely I helped, but I don’t recall any actual details of the road or other cars. I think I was still wearing my pajamas. I pulled the car over every so often to get out, perch myself on the edge of the forest that met the road, and dispel my anxiety through my tears. The dampness in the air matched the density of grief in my lungs.
Even though parts of me ached more deeply than ever before, I could feel that part of my healing was in the leaving.
I have that same feeling now, crouched on the dirty floor of my hospital room, cramming my belongings into three dusty suitcases. India has become an unexpected safe haven that now feels like home. But if I want to grow into a new life, I cannot stay suspended in this temporary one.
The zipper on my largest case is busting open, even as I try to sit on top to contain it. It quickly becomes clear that there is not enough room inside for all the belongings from my new life.
What I have collected includes: enough Ganesha and elephant figurines to open my own shop, several packets of Indian spices, a plethora of bangles I was told (after my proud purchase) certainly contain toxic lead, and a few dresses that I couldn’t say no to.
I also have drugs. Lots of drugs.
Over the years, I’ve gotten accustomed to needles, nasty-tasting pills, and messy powdered concoctions. But what I’ve never quite gotten accustomed to is the MUST PAY CASH notes when I pick up my prescriptions at the pharmacy. More often than not, my insurance doesn’t think I need these medications, even though my doctors do.
In India, these same prescriptions cost about a third of what I pay in the US. And the pharmacy delivers to my room for free. I have taken several different antibiotics here while we try to figure out what’s best for my body and the stem cells. This is likely to continue for some time at home, so I’m leaving with everything I might need . . . and I’m taking it for a bargain.
At home, I fork over $500 each month for a common antibiotic called Zithromax. Here, the exact same brand and dosage comes in just shy of $14. The IV antibiotic I’ve been receiving in India costs more than $70 a day at home. Here, it costs $5.
I feel a driving urge to take requests from Lyme-disease-sabotaged friends back home and even new friends following my blog. I want to bring candy-colored pills and liquids to all in need. If US Customs would let me, I could be the Santa of sick people, bearing a tiny reprieve from one of the challenges of managing uncontrollable, chronic disease. In this cost-effective country, I am so overjoyed at my “found” money, I almost lose sight of the unfairness of having to take home all this medicine in the first place.
I decide the only way to deal with this packing crisis is to ditch one of my medium-size suitcases and get a brand-new, larger one to take home.
I hit the streets, which are, as always, bubbling with action. Delhi’s winter has finally passed, and even though it’s not officially summer yet, it’s hot enough to make me sweat. The sisters have put away the blankets in their nursing stations and are now using hand fans to stay cool.
I make my way down the road, past a man selling coconut water, around a corner where a woman begs for rupees, down another street full of children playing cricket, over a center divider where a giant black cow is lounging, through a pungent food market, and finally over two more lanes of insane traffic.
That’s when I see a luggage shop with every size and type I could ever need: rolling suitcases, duffel bags, and backpacks galore. They are spilling out onto the broken dirt paths that barely resemble sidewalks, and passersby are kicking dust on them.
Examining my choices, I find one with a sticker made from masking tape. This is my bag—a new container for my new life. It reads: 2XL.
I name it Big Blue 2XL and buy it for a bargain.
Heading back to the hospital, I decide to take a new route, even though I’m not totally sure it’s even really a route back at all. Instead of sidewalks, huge ditches run along the storefronts, allowing only an extremely narrow path beyond to walk on. And I now have an enormous suitcase to balance. It must be lunch hour because it seems everyone in the city is on this street with me. There is no room to carry my new purchase by my side. It is now clear why Indians carry things on their heads: bowls, food, bundles of sticks, you name it. If you don’t, you risk getting knocked down, tipped over, and pushed against a car.
When in Rome . . . I flip the suitcase up onto my head, one arm strapped around each side, and begin to make my way back to the hospital. I revel at my awesome balance, my confidence in navigating the streets, and my ability to perform both these tricky tasks with ease. I hear deep belly laughs from some of the locals as I walk through the streets. Turning, I see I am actually faring almost as well as the lady next to me, who is carrying a huge pile of produce on her head. I can only imagine what I look like: white skin, long blond curly hair, pink lip gloss, oversize sunglasses, and a gigantic suitcase on my head.
When I get closer to the hospital, I cut through the back alley. A dog in a sweater sleeps at the entrance of a hidden Hindu temple, children throw peanuts at each other, and a monkey skips through the crowds. That is when I hear the voice. It’s him. His prayers are echoing through the air clearer than I’ve ever heard them before. It is only one more minute before I see my guru with the megaphone. He is younger than I imagined, clean-shaven with slicked-back hair, and is gliding on a black bicycle with crooked handlebars.
I can finally understand some of his words. I keep reciting the first part over and over so I don’t forget it—“Aum shreem hreem kleem klowm gum . . .”—but the rest dissipates into the chaos around me. He turns my way with his dark chestnut eyes and offers the start of a smile, as if he knows me in the same way that I know him. It’s the last time I will ever hear his voice.
I will later learn that these words I have come to love are from the Maha Ganapati Mool chant. This chant is used to invoke Lord Ganesha, the elephant-headed god, the remover of obstacles. It is chanted before beginning new projects as a way to remove obstacles and aid in the success of one’s efforts.
Out alone in dusty Delhi, I feel fear and freedom simultaneously. This mystical land has pushed me to the brink of insanity, but has also carried me into the depths of a love I’ve never known. It has been both everything I despise and exactly what I have needed. Without India’s insistence that I survive it, I am stagnant, safe, like a boat hugging the shore and wasting my sails.
The obstacles of this life are plentiful, but so too are the opportunities to find peace. I feel this out in the city, but even more so in the wild uncertainty of my own unsteady heart.
With the suitcase on my head and this new life before me, I ask myself, How does it feel to be on my own?
The answer that comes surprises me.