by Amy B. Scher
When we finally get right up to the building that holds the tomb, we’ve been wandering around for at least forty-five minutes. I reach my hand out and the wall feels cool, like a bathroom tile floor first thing in the morning. The calligraphy inscribed on the surface of the Taj Mahal is remarkable, consisting mostly of verses and prayers from the holy Quran. To see the marble-carved floral imagery so close-up is to study the petals of a flower held gently in your hand after seeing the entire garden only from a distance.
The crowds that pile into the actual structure holding the tomb are packed like herds of sheep, only less polite. Our guide asks if we want to enter.
“You can enter, but I give warning,” he says, holding his hand out as a stop sign. “Your white skin may be appealing to others and therefore it’s possible it is dangerous! It’s best you don’t go in such tight quarters where you may be groped.”
“We’re gonna skip it!” Dad cuts in immediately, Mom and I nodding with utter approval. Getting felt up in a tomb would be wrong on so many levels.
After a few hours, I am pleased to be able to still be walking around, high on the validity of being part of thousands of culturally mature people who flock to the Taj each year. I feel like a champ for lasting this long and with less pain than expected; the continuous deep throbbing still exists inside, but it is no longer overpowering all of me.
As my physical pain becomes less of a focus, I am present in ways I’ve never been before. I notice blackbirds are screaming, flying high circles in the sky. I stop for long moments to take them in, listening to the click-click of Dad’s camera as he follows their flight. The breeze that blows my hair into my face feels sharp on my cheek. My awareness of my surroundings is heightened and I have less of an obsession about my body and what it is or isn’t doing. I am fully, and only, right where I am. I recognize this awareness as something I learned from studying Buddhism. I’ve tried to achieve it many times in my life, but especially since coping with physical pain and illness—this mindfulness of my current state, without being attached to it. At home, it’s always seemed unattainable. But in India, I am a natural wanderer, a drifter at heart, and able to be present without having to strive greatly for it. Although I am a Virgo to the core, often craving order, analysis, organization, and direction, there is a part of me deep inside that needs none of that. I need only to be. And that part of me seems to have a surprising and direct connection to total and pure joy. When away from home and my ideas of what should or shouldn’t be, it turns out, I do not freak out. Well, not always. Instead, I open up. I slow down. I give myself the permission to be free, to pay attention to what is right in front of me. Everything is new and vibrant, pulling me toward it.
The night is dark when we make our way toward the exit, and as we walk, I inhale the pure awesomeness of each step. There is no agenda in these quieter moments of my journey, no need for an urgent cure, and no immediate awareness of or thoughts about the stem cell treatment I came for.
Instead, I sense an unconscious, unprompted internal shift. Particles of my old self are being left behind on these cherished grounds. I do not have all the answers to who I am today, in these precious slivers of time. In fact, I am not even entirely aware how precious they are. But one thing is undeniably true: I am no longer willing to be the girl who holds on so tight that she breaks her own spirit to do it. Let go. Let go. Let go.
Under the remarkable towering marble and the black sky scattered with stars, the things that make me feel most alive become thoroughly clear: the glow on the crescent moon above me, the spark of a tiny new part of myself, and the brilliance of having a picture with my parents at one of the greatest destinations on earth. When life blows, I think, may I always return effortlessly to this day.
5
To Begin Again
WEEK FOUR
Party big or go home. This is the mood that welcomes us back from our trip to the Taj. The hospital, like the entire city, is an explosion of decorations, music, and festivities in preparation for Christmas and New Year’s Eve. Holiday spirit is in full swing.
I am awakened at 7 a.m. on the last Saturday morning of 2007 to the hammering and clanking of poles. Thanks to the rat, who is still winning, I continue to sleep in the empty room next door to mine. But there is no view from here, so I can’t figure out what all the commotion is about. I shuffle my way back to “our” room, where I can see out to the front of the building and all the action.
When I peep out the window with my squinty, swollen eyes, I see full-on party prep for tonight’s celebration unfolding on the front patio and sidewalk. Typically, things happen at a snail’s pace in Delhi. On the neighboring building, it’s taken six men two weeks to paint one wall; but this morning, outside the hospital, three workers have hoisted up tents, stages, decorations, and music equipment as if they were simply rolling out a Slip ’N Slide. If I hadn’t just heard the noise myself, I would have assumed it was unfurled with gusto overnight by magic elves.
It is still the very early hours of the day when, out of nowhere, Susan from across the hall jumps through my doorway. “Justin on the third floor just peed for the first time on his own!” she yells, running out before I can match her excitement. She has just heard this news from her neighbor, and it’s my job to keep it going.
“Justin peed!” I shout to my direct neighbor, and hear it echoing down the corridor in a morning chorus: “Justin peeed! . . . Justin peeed! . . . Justin peeed! . . .”
Justin is a twenty-five-year-old from Texas who was paralyzed in a tractor accident. For a paraplegic, being able to use his bladder on his own again is a huge accomplishment—one that most of us take for granted.
But Justin is not the only one who is starting the day with a bang.
Chavi’s face reads HAPPY from across the room when I arrive for my morning physio session. It seems that the hospital is abuzz with good news.
Mike, who is fifty years old and suffers from an extremely rare muscle disease (so rare that the chance of getting it is literally one in a million), has just received the news of a 20 percent improvement in his latest muscle enzyme test. With the help of stem cells, his body is reversing muscle deterioration.
Ravi, a one-year-old Indian boy with cerebral palsy, has never been able to make eye contact or reach for things on his own. Today he is proudly and successfully reaching for colored blocks. The whole room cheers him on as he drops them, one by one, with great determination and perfect hand-eye coordination, into an empty fishbowl.
When I finally make it over to Chavi, who is waiting by an empty physio bed, she is beaming. “Tonight will be your first big Indian holiday bash! You are going to really love it!”
Everyone is high on thrills today.
We have just increased my physio sessions to twice a day and have added Velcro strap-on weights to my arms and legs. Physio is getting less challenging because I’m getting stronger, but more challenging because Chavi keeps upping the ante. But since today is a celebration, we’ll all be let out of school early—only one physio session. Par-tay!
“This is the coldest snap in Delhi in nearly six years!” Chavi says, fake-shivering to make a point as she moves and stretches my calves on the table. She is bundled up in a jacket and two scarves, because it’s forty-eight degrees outside. Winter in Delhi starts in late November and peaks in January, with average temperatures around fifty-five degrees Fahrenheit. For the rest of the year, the city is stifling hot. Delhiites don’t adapt to this chill very well. The cold weather doesn’t compare to a New York City winter, but it is a big deal to them. Every night, the sisters bunch together in the nursing stations, wrap themselves in blankets, and cozy up to flasks of hot chai.
“Ooh my, your thighs have grown!” Chavi shrieks while using her pocket-size measuring tape. “Can you tell you have firmed?!” she asks me, grinning eagerly.
“Yes, I can, thank you,” I mouth in a whisper, signaling to her that we don’t have to share my increased thigh size with the entire room.
I love Chavi’s enthusiasm, but this is not group news in my opinion.
“Very thick and good!” she says, slapping them once more for good measure.
Although my many balancing tricks in physio don’t prove perfection yet, I haven’t tripped in weeks. Some days, when I try to walk along the tiled line on the physio room floor, one foot in front of another, I do it so well that I’d feel just as safe if I were on a tightrope. Other days, I am very thankful that Chavi is standing by my side to catch me when I fall. If Johnny Cash only knew how many times I hum his “I Walk the Line” in a single day.
My family arrives to the evening holiday party with excitement, but no particular expectation. Mom and I have hands covered in mehndi, intricate designs created from the powdered leaves of the henna plant. The markets are often dotted with artists offering books full of these gorgeous patterns to choose from. While mehndi was originally only applied on the palms, it now most often covers the hands and feet, and sometimes backs and shoulders. Traditional designs are created from representations of the sun and are typically applied for Hindu weddings and festivals. “We liiiiike!” Sahana says as the spokesperson for the group of sisters who greet us at the party.
The lobby is packed with folding chairs, wheelchairs, hospital staff, and patients and their families. About twenty locals outside have noticed the commotion and press their faces up against the large windows to look in.
The evening’s party begins with a form of classical dance called Bharatanatyam, originating in the Hindu temples of the South Indian state of Tamil Nadu. The name of the dance is formed by combining the words bharata and natyam, which translate loosely to dance and emotion.
The dancers are wearing gorgeous saris in splendid purples and deep reds, with pleats that fall in the front coming down from the waist. They move perfectly to the band’s music. When they twirl and twist, the saris widen like paper hand fans. Their henna-tattooed feet only highlight their fancy footwork. Gorgeous jeweled headpieces sit like crowns on their heads and flowers look to be blooming from their hair. The women’s faces are painted with bold makeup, totally captivating us with constantly changing expressions that capture the mood of each moment.
This party is full-on Bollywood-style, and everyone is loving the treat.
When the dance is over, Dr. Shroff grabs the mic to make an announcement about the special meal waiting for us. She points toward the buffet-style tables outside.
“We have the authentic meal . . . and also the nonspicy for the wimps.” She seems uncomfortable being in the spotlight as she laughs with her dainty giggle.
A few minutes later, she approaches me outside where I am trying both the food for wimps and the authentic food (gasp!). Dad is at a table nearby chatting to the doctors. Mom has linked arms with the dancers as if they’re about to do the cancan, having her picture taken like she’s one of the girls.
“Are you sure you don’t want to try the Indian food for daily meals?” Dr. Shroff asks, using the moment wisely. She has not forgotten the food drama of late. “You may begin to like it with an open mind! Look! You are eating it already.”
Let go, I think, before I can muster up any resistance to this idea. I’m not sure if I’m tricking myself, but I actually feel my body wants this food.
“I think it’s a great idea,” I reply, grinning and proud of myself. “Thank you.”
The party is finally winding down when I hear my dad’s voice on the loudspeaker system. He and the daughter of another patient have gotten hold of the band’s microphone and are performing a rookie rendition of James Blunt’s “You’re Beautiful.” They are taking turns pointing and singing to each person left sitting in the folding chairs. This is karaoke at its worst, but everyone is having a blast. My dad was born to be an entertainer. He was the annual Santa Claus at the local nursing home in our hometown, dressed up as Elvis for his Vegas-themed fortieth birthday party, and is the enthusiastic joke-teller of any group when he can steal the floor.
When I get back to my room after the party is really finished (it’s not over till my dad sings, apparently), I receive an unexpected evening surprise.
The sisters arrive to tell me that I am getting an especially large IV infusion of stem cells tonight. “We begin to increase your dose tonight! Every ten days you will receive large amount,” one of them explains, shaking the glass bottle in front of me. This is huge compared to the typical small shot in my thigh or arm. This is a megadose.
Sahana hangs the bottle with stem cells and saline by my bed and hooks me up to it. For the twenty minutes it takes to infuse, I visualize the cells like glitter in a snow globe, lighting up my body. I enjoy every minute, eyes closed, my iPod serenading me with Smokey Robinson songs to drown out the rest of the world.
Two hours later, I have a horrific feverish feeling and body aches so severe they feel like spasms. Stabbing pains in my toes are shooting up through my legs at double the intensity they normally do. Every inch of me feels like it is throwing an urgent fit. Sweat is gushing out of me. I call for Sahana and she immediately summons Dr. Ashish.
“This is fantastic!” he says with excitement. “Your sleepy immune system is waking up! We are also correcting your nervous system. The large concentration of cells circulating through your body in a very short period of time has a stimulating effect. This is the repair work!” He is ecstatic that I am in bed, in a fetal position, pleading for relief.
This is not the first time I’ve been in this position, and it’s also not the first time a doctor has rejoiced over it.
It was 2005 when I got my first really terrible diagnosis—the diagnosis that would kick off the worst years of my life. The ones that came before it seemed hardly anything compared to this one. I had just turned twenty-five years old.
Even though my late teens and early twenties hadn’t afforded me perfect health, I always thought physical symptoms from one thing or another were just a part of life. In the years before the Puerto Vallarta trip with Jay, when the pain struck my legs, I had seen my doctor for various complaints: migraines, waves of random nausea, problematic periods, unexplained fatigue, a case of shingles, and a flu that lingered for months. But these were things that he described as “maybe hormones” and “probably nothing.”
Jay and I had just gotten back from Mexico and I returned to work at Harley-Davidson, the icon of freedom, stuck not only in my cubicle but in my declining body as well. My job sounded glamorous, but I was secretly most attached to my title of marketing director and not the job itself. I told everyone how much I loved it when they asked. “It’s so fun! It’s great!” I’d say. But the reality was that my car reeked of leather from carting jackets and chaps to events, I worked almost every weekend, and my boss was the human version of autocorrect. Whatever I did or said, she’d steamroll it with whatever she thought I should do or say. I stayed out of her view, hidden away in my corner overflowing with flyers for specials we were running. I was trying to ignore how much I hated my job and how my legs were failing me—always in pain, weak, and causing me to trip when I walked. I was also trying to ignore that even though I was in love with Jay, the fractures that had already started were only getting deeper. Still, I pressed on. I treated it all like I treated my credit card bills. Ignore and it does not exist. Nothing to see here.
That’s when my feet and legs started tingling. A brand-new symptom. This was when I knew that whatever had happened in Mexico was definitely not a fluke. Even a twenty-five-year-old knows that tingling is not “hormones” or “nothing.”
A month later, when I finally made it to the neurologist, I was that girl begging her boyfriend to cut her legs off.
Dr. Ourm, a gentle man with a thick Persian accent, did several tests that involved sticking needles in my legs and measuring the electrical activity of my nerves. And when he was done, he explained that my body was eating away at the covering of my own nerves, called the myelin sheath. I had a disease called chronic inflammatory demyelinating polyneuropathy, CIDP for sho
rt; and it was going to take a lot, he told me, to try to stop it.
This is the kind of diagnosis that turns your normal life into an out-of-control, spiraling mess. This is the kind of diagnosis that takes you from the person who knows nothing about your body and how it functions to the person who has to know everything. This is the kind of diagnosis that heaves you hard and fast into a whole new world—of medical terms, merciless insurance companies, and statistics—ready or not, here you come. Published reports estimate that as few as 1 in 100,000 people have CIDP, this type of neuropathy caused by an autoimmune reaction.
“I’ll fill out the disability papers. You’re not going back to work, Amy,” Dr. Ourm said to me.
“But I have to be back after lunch,” I argued.
Dr. Ourm knew what was coming.
At each follow-up visit, he would show me a laminated pain chart, a line of smiley faces from happy to sad, and numbers from one to ten. Number one on the chart, accompanied by a very chipper smiley face, meant you were in only a small amount of pain. Number ten, accompanied by an overdramatic sad face, meant you were living in misery. That ten was me, almost always, despite strong medications, including handfuls of narcotic painkillers each day.
That pain chart became the gauge for my day-to-day life, and provided a much-needed lighthearted game for Jay and me.
Jay would wake up in the morning and say, “Good morning, honey. I’m a two today. And you?” I’d often reply with something like “I was up with a nine all night, but I’m feeling a bit better now. I am hoping one day I can be a two like you!”
