by Amy B. Scher
I’m hanging on to the threads that connect me to home, hoping they’ll be enough to hold me together: the Skype calls where I watch Zach eat mac and cheese and practice saying “pasta” from his high chair; the encouraging comments left on my blog posts by loved ones, but also strangers who have stumbled onto it; and e-mails from my friends providing updates on the drama in their lives at home. But as grateful as I am for these things, they hardly anchor me. There is only one reason I have not begged my parents to get back on that plane with me and go home: faith.
It was only a year earlier that I was prompted to seriously contemplate the idea of faith, because I needed desperately to believe that there was some greater agenda to my existence than just my suffering. It was essential for me to find some kind of belief that my mess of a life had any order or meaning at all.
Jay and I had landed in Chicago for yet another extreme but promising treatment option. When it turned out to be a dead end, I was thrown into a state of despondency. While I had managed to maintain a mostly decent mind-set up until then, it became apparent that I would need more if I were to survive with any grace. Or survive at all. The big problem was that I wasn’t sure exactly what faith was or how to get it. I had always struggled with the idea of faith: unfettered belief that is not based on any proof. I speak the language of logic and science. I often wondered how people develop the blind trust that faith requires. Where does it come from? And more important, how do I find it?
Friends from my childhood went to church every Sunday and asked God for his help before bed, sleeping soundly because they knew all their prayers would be answered. They said grace at the table before meals, while I impatiently waited for the “Amen!” and could eat already. They sang songs about Jesus and how much he loved and cared for them.
Growing up Jew-ish (a.k.a. not super-religious), I learned the basics about Judaism in temple. I learned about Jewish culture and food. Food! Food! Food! I learned about our people’s history and the Holocaust, which my grandparents and uncle had survived. I learned the Hebrew language for my bat mitzvah.
In my midteen years, I became a self-proclaimed Jewddha (a hybrid Jew and Buddhist) and delved into the world of spirituality. I read Be Here Now by Ram Dass over and over, burned sage in my room (and sometimes accidentally through my carpet), and learned to count mala beads in a corduroy chair from the 1970s that I bought for twenty dollars at a thrift store. I didn’t necessarily find God, but I did find something that felt like a hint of safety—a deep connection to something sturdier than I was. Somehow, though, I drifted away from the magnetic pull to spirituality before I would need it most.
When I was an adult and out in the real world, I had coworkers and friends with an abiding confidence that everything was happening in their lives perfectly (even when it seemed anything but). It was faith, I think. I watched them navigate challenges with ease, knowing God was working round the clock for them. I questioned often, but never out loud, how these people could fly on faith, believing some invisible man in the sky had their back. Because that’s all I understood of what God was, or what he did. I wished I too could hand over the pressure of managing my failing, flailing life to someone or something else. If I could know God, he could surely help me with my shit show.
I wanted to believe that message everyone else around me was hearing: God’s got this You can relax now.
It was not long after that trip to Chicago that my grandpa Leon—my dad’s dad—said something to me in his last days of life. “I’m going to make sure you get better, even if I have to knock down God’s door to do it,” he croaked to me through the phone. And the first thought that came to my mind was, How in the freakin’ world does he believe in God? Grandpa Leon had escaped the Nazis and built a bunker in the woods of Poland to save eighteen Jews from death. Grandpa Leon had seen almost his entire family be killed. Grandpa Leon had survived the Holocaust, but carried all the brutal memories with him when he left for the United States. He grew up believing in God, and not even all of that shook his resolve. He never blamed God for letting something so horrific happen, or started to doubt if God really existed in the first place. Perhaps his own survival only strengthened his conviction. Grandpa Leon, even in the face of humanity’s greatest struggle, had mad faith. There were no ifs for him. Everything was going to work out. There was infinite order to everything, he seemed to know.
We humans like to prove to ourselves that there is good reason to believe something before we commit. But Grandpa Leon made me really question: What if we don’t actually need to understand in order to believe? What if we don’t need to make sense of every little detail before we take something on as truth and carry it forward? And what if faith only shows itself to us once we already believe?
It was then that I decided I would have faith. Just like that. Grandpa Leon was enough proof for me that faith was not only possible, but worth it. If he could have it, so could I. For me, maybe faith wasn’t to be found in God, or any particular religion, but in believing in something bigger than me. I began to trust that some greater power, maybe even the entire Universe, had my back.
I am slightly disappointed that my faith seems to be wavering now in the midst of my epic Indian meltdown, although luckily I’ve learned that faith is fairly forgiving. It is not something that requires my constant attention and promise of loyalty. It often disappears, waiting for my call to it from desperate places like this, before it will come back and sustain me again. But, always, it returns.
“We are getting out of this hospital room, babe. Let’s go see some cows!” my mom declares one late afternoon when I am hiding in bed, drowning in my own snot, sorrow, and self-pity—because, once again, I’m insatiably hungry, homesick, and can’t stop crying. She is sitting next to me on the floor and has already offered all the things she always does when I’m a mess: tissues, hugs, and food (although there is not much to propose on the latter, we never stop trying).
That’s how we end up walking around Delhi, with scarves wrapped around our faces to prevent us from coughing up sediment later. On cooler days, when people are trying to stay warm, the pollution is unrelenting, and the doctors warn us not to even go outside. We are still new at crossing these crazy erratic roads, so we hang on to each other tight when we do. If the situation looks extra-precarious, we do what a friend from home, a frequent visitor to India, taught us: find a friendly-looking local, grab an arm, and follow their expert lead to the other side. By the time we are a few blocks and ten minutes away from the hospital, we’ve seen three cows sitting in the street, two shoeless Indian children dancing in the traffic for money, a tuk-tuk overturned in front of a building, a mailman on a bicycle hurling the day’s deliveries at front doors without stopping, and a chair salesman trying to shoo away a group of stray dogs fast asleep on his furniture. When I see my favorite grocery store, I light up. As much as I am inconvenienced by having to make my own teapot meals, I find some comfort in the normalcy of shopping. We walk in and I immediately begin rummaging through a giant disorganized shelf of food and paper products.
It is now, outside the hospital walls and energized by the world around me, that I recall a conversation I had with Dr. Shroff in the first days after my arrival.
At the request of one of the sisters, I had given the staff at Nutech a list of foods I could and could not eat. On the could list: protein and veggies. On the could not list: everything else. Over the past years, my brain has been programmed with messages like dairy is bad because it causes inflammation, sugar feeds the Lyme bacteria, and carbs are evil. And while maybe some of that has truth to it, being ridiculously strict about my diet only causes me more intense stress. And now, unstoppable hunger.
When Dr. Shroff saw the list, she came to my room with it and asked, “But what about your healthy cells? They need some sugar. Dairy is not bad for them. Carbs are okay in moderation! Each night, you can have a small amount of red wine and chocolate. You need some pleasure too.” All I could think was, Are you trying
to kill me?
It isn’t until I am squatting on the mud-smudged grocery store floor that what she said begins to sink in. My whole existence for years now has been dedicated to “killing” Lyme. I have built my entire life around Lyme disease, the one thing that I don’t want. What about the rest of me?
“Mom! Look!” I scream as I hold up a box of Kraft mac and cheese that was wedged between a bag of lentils and a box of basmati rice.
“Oh my Gaaaaawd, babe!” She runs over in disbelief. I keep digging and soon find a packaged chocolate lava cake, the kind where you add hot water to the plastic tray full of batter and it magically puffs up into dessert. It’s inflatable chocolate cake, and it’s a frickin’ miracle! Where is the genie granting me these wishes? There is nothing GMO-free, organic, or natural about this food jackpot, but I am thrilled!
Clutching these boxes as if they are solid gold, I rush them to the register and pay a total of 200 rupees, or three American dollars. I have only a tiny bit of guilt about the quality of this food, but even that will be obsolete soon. The perspective I am about to gain is priceless.
What if, in my furious effort to find the cure, I have been missing something critically important all along? There is no question that I need these stem cells to work for me. There is no debate that I need my legs and my health back. And no one would argue that I also need to stop bursting into tears and get my act together. But until that happens, what if I also need something that has been completely within my reach all along? My own permission to save myself any way I can. What if I loosen the death grip I have on my own life? What if true faith means grabbing on to whatever you can in each moment, and letting that be enough to carry you on? What if there are a hundred opportunities to save your life every single day? And none of them look like the cure, but actually are essential fragments of it. What if everything that came before now did not seem like healing, but was a tiny step toward it? And what if today, when I can’t change any of my circumstances, I can save a little piece of myself WITH THIS INFLATABLE CHOCOLATE CAKE?
After dropping Mom off at the bed-and-breakfast, I go back to my hospital room, boil the kettle, pour water into the plastic dish, and seal the lid back on quickly. I think of Zach and our favorite ritual—pretending it’s his birthday on just any random Tuesday. We bake a cake, pour the entire container of sprinkles on it, light the candles, then giggle through a verse of “For he’s a jolly good fellow” before making as many wishes as we want. There are no rules in our world, especially on fake birthdays.
When four minutes have passed, I uncover the container with care. I scoop each bite out of the tray, moving it slowly to my mouth and savoring it, as if Julia Child has prepared it especially for me. Some food is good for your body, but this food is good for my soul. With every rich chocolate morsel, I sink deeper into the faith that somehow, I will be okay. Maybe, hopefully, even better than that.
Sitting on my bed, full of the best unhealthy thing I’ve eaten in a very long time, I hear a man with a strong, low voice calling out in Hindi from the back alley behind the hospital. The voice is moving, waxing and waning, amplified by a megaphone. I can’t understand what he’s saying, perhaps a prayer of some kind, but the rich tone soothes me. I peer out the side window of my room, but can’t spot him. I imagine him as a gray-haired, white-robed guru on a slow-moving bicycle, weaving through people and cows to deliver his message. God on a loudspeaker, maybe.
I grab my Hidden Messages in Water book and ask into thin air: What do I need to know in this moment? Please say it’s that this all might be turning around for me.
I flip to a random page for a sign and see the striking images—groundwater before and after an earthquake in the western part of Japan’s Honshu Island. Immediately before the earthquake, no crystals were formed, as if the water sensed the impending doom. But after the earth’s rumble, ah! Once some time had passed, the ability of the water to form crystals returned yet again.
Yes, the truest kind of healing comes from the quake that causes the cracks.
4
Pierced
WEEK THREE
“Babe, I want to get my nose pierced like the Indians!” my mom announces excitedly out of the blue.
We are strolling down the main drag in the hub of our neighborhood when she drops this bombshell. It is a brisk and bright afternoon and the smog is unusually absent. I have just purchased my usual two marigold garlands from a woman selling them off a fuzzy blanket on the sidewalk. These garlands, called varmala, have an unpleasant smell—a little bit like rotting fruit—but I can’t stop buying them! The fluffy pom-pom suns, strung like necklaces, brighten the whole street and my hospital room. We visit this area of Green Park almost daily now, and it’s starting to feel like any Main Street in America to us. We know which shop to visit for the best Indian sweets—multicolored glutinous gifts, made with rich flavors of sweet syrup, cardamom, saffron, and mango. We’ve also discovered a coffee shop with the perfect cup of chai. It has a cozy bookstore in the back with a great variety of Indian books, some of which are in English. We feel worldly and cultured when we shop there. I sink into my chai and a book called Q & A, which will later become the blockbuster movie Slumdog Millionaire. Mom always gets a latte, which tastes like those at home but is made with soya milk, and another Nicholas Sparks book. She’s going through them both at record rates. We have a book exchange at the hospital, and Nicholas Sparks books are a hot commodity.
“Will you do it with me? We can have matching piercings!” my sixty-two-year-old mother asks.
Something is happening to my mom in India. She is not typically conservative by any means, but here, she is more carefree than I’ve ever seen her. India has brought out her inner flower child and she seems to be fully embracing it. In this crazy city, she is automatically 10 percent more fun, willing, and even a little bit wild.
I think this is true about me too. What I love about travel is how you can and will do things you’d never do at home. There is a freedom of some sort that cannot be captured in your typical environment. Something about being away from home makes the not-normally-okay somehow okay. The rules of home fade across borders, perhaps because no one is keeping score—not even me. The order of daily life is absent, and therefore all my inclinations to adhere to it are as well. Here, it’s all YOLO (you only live once), all the time.
“Come on, babe, I came all the way to India for you,” Mom jokes—or maybe it’s not a joke. Her head is tilted to the side and her ponytail is swinging with hope.
“Let’s do it!” I agree, rolling my eyes with a playful smile.
We walk only a few blocks before spotting a fancy-shmancy jewelry shop.
“Over there.” I point, already embracing the adventure. There is an armed guard outside and gold chains hanging in the window.
We enter the store and I approach the suited man behind the counter to ask if they do nose piercings.
“Ahh, yes, suuuuure,” he says, making no eye contact, but sizing up our noses from a few feet away. He claps in the air and a barefoot teenager appears from the back room almost instantly. His hair is growing in all different directions and his shirt is torn. In his hands, he holds a pair of rusty pliers, a little container of jewelry, a blue pen, cotton balls, and a canister of alcohol. I guess he is the piercer.
“You’re first,” I say to my mom, caught somewhere in between a this is stupid and a this is hilarious laugh. I should stop us both from letting a shoeless stranger put permanent holes in our faces, but it’s too entertaining. Mom sits down on the stool and closes her eyes, and the boy puts a blue pen mark on her left nostril. Women in India are always pierced on the left side of the nose. According to Hinduism, this is one way to honor Parvathi, the goddess of marriage. A large nose ring, joined from the nose to the ear with a chain, is an integral part of bridal jewelry. It is also said that the left side corresponds with the reproductive system in women, so the piercing allegedly reduces pain during childbirth. Some also say it can alle
viate endometriosis, a painful condition where the uterine lining grows on other parts of the reproductive system. This is another disease on my never-ending list. Since I first got my period at thirteen, I’ve had several surgeries to ease my agonizing and heavy menstrual cycles. None of them have worked. Maybe this is my ticket to monthly serenity. No pressure, piercing guru!
There is no consult or pleasantries before he lines up a long, thin needle to Mom’s nose. He never asks about her preference for sides, but I don’t think she cares. She is fidgeting in her seat with anticipation. I’m the nervous mom here and she’s the excited teenager. Capturing the entire thing on video, I watch through the camera. When the boy makes the puncture, her only reaction is a slow, tight blink of her eyes. She says nothing and is done before she can even tear up. He removes the needle, inserts a thin gold rod, and pushes it through. Bending the piece of metal into a hoop, he finishes and then tips his chin up for her to get out of the seat.
“Woweee, I love it!” she says, admiring herself in the mirror.
The piercer doesn’t speak English, but when he sees my mom standing proud in all her boldness and bejeweled glory, he finally cracks a smile.
He waves me over to brave the stool next. It is with my butt in the seat that I feel the weight of what a truly stupid idea this could be. My immune system can’t even handle a cold, let alone an infection from a piercing gone wrong. I glance down at my right hand, which has an IV line inserted and taped down. I cover it with my left hand as if to shield it from seeing this irresponsible act. The piercing hurts more than I imagined but not enough to make me cry. I move to touch my nose gently when it’s over, as confirmation that I really did it, but the boy swats me away. The man behind the counter claps once more, and the boy leaves as quickly as he appeared.
