by Amy B. Scher
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.
3
A Solid, Unshakable, Pragmatic ROCK
WEEK TWO
I am losing my ever-loving mind. This is code red, full-on freak-outs-ville. To put it nicely, my honeymoon period in India is over.
I am the person who can get through any crisis. I am a tree. I am steel. I am unbreakable. I am a solid, unshakable, pragmatic rock. Except now.
I am falling the fuck apart.
There have been days with no hot water, which stops me not only from showering but also from washing my dishes and my underwear—both of which I have to do in the shower. The intermittent Internet access cuts me off from my lifeline to home. Then there is the noise. Ohmyholycow, the noise. Even after dark, there is not a second that’s quiet. Honking horns. Yelling people. Beeping trucks. Howling dogs. Screaming children. Cars backfiring. Motorcycles skidding out. For someone whose own thoughts are loud and disruptive enough, this external pandemonium has posed quite a challenge. I have always had impeccable hearing. When I was a kid, I could hear the dog-training devices that are supposed to be silent to the human e
ar. In the past few years, I have become even more noise-sensitive—another symptom of Lyme disease. I register everything at what feels like a billion decibels.
I am also totally unable to find any kind of peace with the food here. The stem cells are kicking my appetite into high gear, and I can’t get full or satisfied no matter how hard I try.
The hospital chefs do their best to accommodate the foreign patients by serving “American food,” but the spaghetti Bolognese has curry sauce on it, there is corn in everything, and I often cannot identify what the spongy carb on my plate is. When meals are served in my room each day, I pick at whatever of it I can stand to eat, even though I am starving. My friends at home often call me Sally—as in When Harry Met Sally. Everything I eat is ordered on the side, without this or that, or altered in some way. This is just not a great place to be Sally. I am my own worst food enemy.
Dr. Shroff has kindly offered to have Indian food sent from her other hospital in Gautam Nagar, where they only care for local patients and only serve authentic food. She promises the chef is fantastic and everyone there is pleased with the meals. I have no doubt about this at all, but the problem is that I’m not a big fan of Indian food. When I decided to come here for treatment, one of my first thoughts was, Why, oh why can’t it be in China? I love Chinese food.
I had never even tried Indian food before I made the decision to come to Delhi. After I booked my flight, my friend Ajay, whose family is from Udaipur in southern Rajasthan, said, “Amy, the first time you eat Indian food cannot be in India.” Thank goodness for Ajay. He took me out to his favorite local Indian restaurant, where the hammering Hindi music and pungent waves of cardamom fought for space in the air. The dining room was draped in gold-colored curtains and scattered with silky burgundy pillows. The set of shelves behind the hostess desk showed off several framed pictures and figurines depicting Hindu gods and goddesses. Everywhere I looked, there was something to see. Except on the menu. When we sat down at our table, I couldn’t find a single dish that could be ordered Sally-style. Ajay did the ordering: saag aloo, potatoes and spinach cooked with garlic, ginger, and chili; butter chicken, tender pieces of chicken in a rich butter and tomato sauce; and tandoori seekh kebab, ground lamb cooked on skewers in a special clay oven. While I did end up kinda liking my meal, I still only ate half the plate. I should have known I’d be in trouble when I hit the real world. I wish now that I had tried harder not only to be okay with Indian food, but to love it. I regret not going back every week to try another dish as if I were training for a marathon . . . of Indian spices. By the cash register, there was a small bowl of fragrant colored confetti that people were scooping into their hands with a tiny spoon and putting in their mouths. Mukhwas is a type of breath freshener and digestion aide that includes candy-coated fennel seeds, called saunf in Hindi. It’s like eating perfume, but better. This, I loved. But surviving on breath freshener for my entire time here is less than ideal.
In an effort to meet the goal of satiety, I’ve had to get culinarily creative, making food in the electric kettle in my room: rice, boiled carrots, and soup. Desperation is the mother of invention. I get my vegetables from a man selling them from a wooden cart on a street corner. I clean each of the ingredients with antibacterial wipes before eating or cooking them, just for extra protection against bacteria and food-borne illnesses. I buy the rest of the items I need from a grocery store close by. It looks like a corner store you might see in New York City, but with a seriously Indian twist. Food items are literally piled on top of each other from floor to ceiling—boxes, bags, and cans—in no orderly fashion. When I pick something out, everything around it falls down. I’m clearly not yet skilled enough to navigate the Jenga puzzle of the shelfless markets. Cartons of eggs are piled five feet high and labeled “Keggs.” The “Keggs” have a sticker on them that says “nearly organic.” My parents and I have gone around and around trying to figure out what the “K” in Keggs stands for (Kreative, maybe?), but we’re no closer to solving the mystery than when we started. I eat three or four of them a day anyway.
Even though the doctors reassure me that hunger is a side effect of the stem cell treatments, I wonder if my struggle with it is also a deeper message from my soul. What am I really so hungry for? At this rate, the answer could be . . . everything. I am hungry for the comfort of my own bed, the silence of nature, and socks that aren’t permanently stained from the soot on my hospital room floor, for some kind of control over my food, and for my former mental stability.
Living with a rat in my room has not been helping matters either. The first time I heard its nails scurry on the windowsill, it was just after midnight and it was inches from my head. I shot out of bed in terror, deciding what I should do. Call the front desk? Sleep in the bathroom? Instead, I was kept awake in distress and starving, listening to her eat my crackers. I assume only a she would be so perpetually insistent.
Instead of reporting this intruder to the hospital staff, I do what I always do when I can’t figure something out—try to see if maybe it’s some kind of sign from the Universe.
It was while I was visiting my brother, David, in New York City that I had my very first phone meeting with Dr. Shroff—the one that would close the space between me and my wide-open future. “You may come to India as soon as possible,” she confirmed after studying my medical records. Her approval felt like the equivalent of a never-ending ladder in a game of Chutes and Ladders. Was I really getting to climb ahead of science and time toward a cutting-edge medical treatment I couldn’t get in the US? Just that morning, David had had to help lift me up off the bedroom floor when I couldn’t get up on my own.
The following day on my way back to the airport, my cab encountered an ugly construction mess, which detoured us one quick street over. As I looked out through the fogged-up backseat window, my jaw fell in awe. As far as I could see, the entire street was lined with fuchsia flags that danced in the wind and read: Incredible India!
That’s when I became hyper-cognizant that in the little flashes of life, there are signs everywhere. I’ve been looking more closely ever since.
The interpretations I find online about rats are actually quite intriguing. First, that a rat has scurried across your path may mean you need to assert yourself in new ways. Hmm, could be true. Another possible symbolism is “new beginnings.” Definitely feels right. Then I find something that has been observed for centuries: the proverbial notion that rats can tell when a ship is sinking and possess a mystical power to anticipate disaster. Seriously, Universe? This is terrifying. Is the rat here to tell me to hurry up and flee this place before it’s too late? Or has she made a home here because she’s telling me I should stay? Now she is not only my annoying roommate, but a cryptic messenger. It’s been a week now and the point of her presence is still not clear. After I finally tell the front desk about my new hairy sign from the Universe, the staff, unbeknownst to me, set a makeshift glue trap. But the only thing it catches is my now-sacrificed furry and jeweled purple slipper. The rodent still runs free, so now we are roommates during the day, but at night I sleep in a safe zone, the hospital room next door. The rat is clearly winning.
But all of that—the lack of hot water, the noise, the food drama, the rat—is only what’s going on outside of me. The inside of me is also in complete chaos.
I feel like a massive contradiction, parts of me healing and surviving and other parts synchronistically coming undone. At this time in my life, I have not yet learned that this is almost always how we get from one place in our lives to the next: very, very messily.
Despite my goal of getting off all of these medications I take, I’ve had to start several new antibiotics to protect my new stem cells from getting infected with Lyme. I feel even more heavy and exhausted than before and am not sure if it’s the Lyme getting kicked up, or the new meds dragging me down.
There is a common phenomenon that occurs with Lyme disease treatment called a Herxheimer (herx) reaction. This reaction happens w
hen the Lyme bacteria die off and other toxins are released in the body. During this time, symptoms may flare while the body works hard to eliminate the toxins and recalibrate itself. The process feels terrible, but is seen as a positive indication that the treatment is working. No pain, no gain?
Dr. Ashish has also told me about a concept called retracing. “When you are getting well, you may go backward, often re-experiencing symptoms in the opposite chronological order they first appeared!” he explains. He is fascinated and excited by this process. “The first symptoms to come will be the last to go, but you may endure them each one more time,” he says, raising his eyebrows. So now I am constantly confused about whether the “getting worse” is actually happening because I am getting better. Or maybe I’m just getting worse.
In good news, some of my symptoms are clearly improving! My pain has faded ever so slightly, enough that I’ve been able to decrease my narcotic pain medication by half a pill per day. When your body is constantly pulsating with pain, any improvement is a huge deal. Like, mega-big. I’ve also been able to cut back my sleeping medication, and as an extra bonus, I haven’t had to take my prescription for heart palpitations, which used to be my constant companion. Since I’ve been sick, I have only ever added medications. Never have I decreased them—except when they were making me worse or not working at all. When I glance over at my nightstand overflowing with bottles of pills, a small part of me is finally able to entertain the idea that a day might come when I don’t need them—or at least, not every single one of them. Every morning and evening when I get my stem cell injections, my muscles begin to twitch, responding with what feels like a happy dance. My heart swells and I’m engulfed with thanks. But still, I am cautiously optimistic. Could I really be improving this quickly? The other day, a group of disgruntled patients who don’t think they’re getting results fast enough were touting a conspiracy theory that we’re getting apple juice in our IVs. But if that’s true, those are some damn good apples.
