by Amy B. Scher
On his way out, he closes a tissue-paper-thin curtain that is expected to shield me from the commotion of the rest of the facility.
For the next three-quarters of an hour, Hindi music blares in the background and the workers proceed to make more noise than I thought possible. They sing as they shuffle through the hallway area near me to get supplies, flipping the lights on and off repeatedly while yelling something in Hindi to the front desk. I imagine that they’re confirming, “Yep, light still works.”
There isn’t a minute of relaxation that occurs. It’s impossible.
When it’s time for the actual scan, I’m escorted into a room where the doctor I met earlier is waiting.
“Please remove your jewelry, jacket, and shoes,” he says in a curt tone, pointing to the table. I feel immediate relief. During my first week in India, I got an MRI with a technician who pointed to a sign next to my dressing room: PLEASE REMOVE ALL YOUR UNDERGARMENTS. What?! I’d never had to remove my bra and underwear for MRIs at home. This didn’t seem legit at all, but what could I do? I stared at my pink-and-teal-striped underwear, debating. With the door bolted shut, I followed the directions, the whole time hearing my mother’s voice shrieking in my head: “What, just because a man tells you nicely to take off your underwear, you do it?”
I lie down on the table. Back home, the directions for this test are simple: keep your head as straight as you can, and try to lie still. But here the technician trusts me with nothing. He straps my head into a cagelike contraption, tightening Velcro strips over my forehead and chin. He stuffs cotton beside each of my ears to keep me from moving. I don’t consider myself claustrophobic, but in this moment, I am. A radio station is full of static in the background, the printer is jamming, and the fluorescent lights are glaring through my eyelids. No one notices any of it. “Don’t move for the next forty-five minutes,” they tell me. “Stay frozen. It’s very necessary.”
The test is physically painless, but mentally exhausting. I can’t move my head in this cage, my jaw hurts from clenching, and there is a giant piece of machinery hovering so close to my face that it’s skimming the tip of my nose.
Eventually I am done and they set me free. “When you send me your last results, I will provide the new ones,” the doctor says. My mom and I leg it out of there as fast as we can.
It is later that evening, after I’ve e-mailed my part of the bargain, that he replies:
Ms. Amy, I have attached your updated report!
I am excited! Mostly to see proof of my progress, but also to have results this fast. At home, they are always sent directly to the doctor, who then discusses them with the patient. Patients never get this kind of service: e-mailed reports—on the same day—directly from the facility!
I’m about to see why.
My brain has gotten worse since last April, not better.
Last time, I had only a single area of reduced blood flow and oxygen to my brain. Now I have three.
My lungs choke. Heat rushes to my head. My brain is on fire with panic.
I have a severe case of scanxiety. Scanxiety: noun: an undesirable emotional or physical reaction to scan results. I am pacing in my room, reading and rereading the document, while erratic sobs leak out of me. I call my mom, leave a message for Dr. Shroff, and fax Dr. Harr back home. Then I disappear right back into my fear sphere, a place where I have absolutely zero inability to be calm, rational, or reasonable. This is where I go when it feels like there’s nowhere else to run. My worries, doubts, and most ominous questions wait for me there, tantalizing me with addictive worst-case scenarios and outcomes. For some reason, despite all efforts to avoid it, this crazy mental space is a familiar home that pulls me in.
I start asking questions that I have no hope of answering alone.
What does this mean?
Why are things worse?
How could this be?
Who is to blame?
Will this ever end?
“It’s not that bad,” Dr. Shroff tries to convince me the next day when she comes to my room. But what I hear is, “It’s that bad.”
Her consolation fixes nothing. My brain is still on fire.
Dr. Shroff reassures me. “The stem cells will start to help replenish blood flow to your brain and revive the tissue so it can absorb more oxygen. Just try to be patient.”
It is a few hours later that I receive a fax back from Dr. Harr’s office.
The note says:
Amy—
Different facilities perform and interpret the scans in different ways. You’re not comparing apples to apples. Use this scan as your baseline and get another scan before you go. Stop worrying.
Dr. Harr
I should feel comforted, but I don’t. I am angry with my body and the doctors. It’s easy for them to say these things, I think, because it’s not their brain. When you are twenty-eight years old, you don’t want anything wrong with your brain, even if it’s “not that bad.”
I think back on all the years of love, support, and compassionate words I’ve received, remembering how hard it is to know what to say to someone who is in pain. Before I got sick, I too spoke some of these questionable consolations to others. And maybe, accidentally, a time or two since. When we don’t know how to fix things for another person, we sometimes end up spitting out clichés, not as condemnations but as offerings of love. I’m guilty as charged. “It’s not that bad” is a well-meaning sympathy any of us might extend when we’re worried that it really is that bad. It’s not the worst offender I’ve heard, but it’s definitely on the list, and I have quite the list:
“I could never do what you are doing.”
Honestly, I’m no superhero. You could totally rock this too, if you had to. In fact, we could all do anything if we absolutely had to. I once thought I could never do what I’m doing either, except for now I don’t have a choice and that’s exactly how I’m doing it in the first place. Some nights when I go to bed, I think to myself, I cannot do this, not even for one more day. Eventually I fall asleep . . . and then . . . I wake up with a life that is just waiting for me to wade through all over again. You do it because even when—especially when—you think you can’t, you’re somehow still making it happen. And you do it every minute of every day—no breaks allowed—because if you don’t, every single thing that you’ve barely just been holding on to might fall apart too.
“You’ll see, one day we’ll look back and laugh at this.”
We might think it is funny one day—but, depending on how this goes, we also might not. So unless we are truly experiencing a serious humor drought, let’s not count on laughing just yet. If anyone gets to laugh at this one day, it’s gonna be me—but I’ll invite you over to help if I need it. For now, though? This is still so not funny.
“It could always be worse—just look at so-and-so.”
Sometimes we just need to have a guilt-free pity party for ourselves—tissues, sappy movies, and ice cream in abundance. We need to cry and scream, even if there are other people out there who have it way worse. If you want to be a real friend, just bring over all mint chocolate chip ice cream, please?
“This time in your life was meant to be.”
I can so get on board with “meant to be.” I truly can. But the thing about “meant to be” is that most of us apply that one only when we feel like doing so. And lately, I seriously don’t feel like it. I cannot see how physical and emotional torture is meant to be. Not yet, anyway. If I find out that this crisis is really awesome sauce in disguise, I will be super stoked. But for now, the only thing I can believe is meant to be is getting my life back or winning the lottery.
“God doesn’t give you more than you can handle.”
I love this idea. But if God is even really up there at all, he certainly doesn’t feel like a great judge of who can handle what right now—especially if there’s any chance God thought it was okay to hand this horror to me in the first place. I respectfully think he might have to sit out for this call.
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“Attending church or finding spirituality might help.”
I know some people find great solace in religion, and I honor that completely. I’ve always wanted to be one of them. But in the midst of crisis, I can’t do it. So, no. Just no. Also, if I go to church, I might find more people who insist that if only I’d been attending all along, this might not have happened. Plus, I’m Jewish.
“Tomorrow will be better.”
This is unlikely, based on my experience yesterday. Being miserable today, it’s hard to see how twenty-four hours could change all that much. If tomorrow is better, I’ll come back to you and apologize for rolling my eyes; but unless you hear otherwise, assume it turned out the same as the day before. And the day before that.
But here’s the thing. There’s something funny about this list that I think you should know. Years from now, when I’ll be less adamant about what I know and more open to what I don’t, I will believe everything on it.
In the meantime, while there are endless wrong things to say, it was my friend Anita who taught me that there is always one right thing we can try instead.
It was many years ago, during my IVIG treatment, when she asked with genuine concern, “How are you feeling?” “Horrible,” I decided to say truthfully, out of character for me, and with guilt for doing so.
“Well, that fucking sucks,” she replied without a filter, leaving her statement there in the air with a huge space of awkward silence looming behind it. This silence gaped . . . wide . . . open. If this were me, I would have run to its rescue and said something else. Quick! Fix this space! It needs help! Say more! It’s drowning and only I can save it! Anita just left it alone, teaching me that when someone is in pain, the best and most unexpected consolation is to simply meet them right where they are.
The next afternoon, no matter how hard I try to convince myself that things are “not that bad” or that one day this will be funny, none of it is true. Everything still sucks and my brain is still on fire.
I have just woken up from a nap when I hear a sharp knock on my door.
An older Indian woman makes her way in, flipping on the light as she enters. She has long, thick, silver hair pulled back in a low ponytail, and is carrying a huge silk purse and wearing intricately patterned Indian attire.
“Dr. Shroff has sent me,” is the first thing she says, in a raspy voice. Then, “I am Dr. Nittali. I have been a physician for thirty years.” She starts pulling the plastic chair from the corner of my room right over to the foot of my bed. She feels closer to a presence than a person—like a spirit, wrapped tightly in a sari.
I sit up in my bed, relieved that Dr. Shroff has sent another doctor to evaluate me and confirm that we have nothing to be concerned about.
“Don’t worry. I know you are going to get well,” she states. “It must be hard to feel so sick and look somewhat normal, yes?”
I have no idea why she is here, but as she relaxes into her chair, I can tell that she’s crystal clear about it.
“Yes,” I answer. I don’t think about it often, but what she says strikes me deeply. Doctors have often commented on how “healthy” I look as an addendum to why they are so confused about my dismal blood tests and dysfunctional body. “I’d never be able to tell you were sick if I didn’t know your medical history,” they’d say. I never leave the house without my hair and makeup perfected and my nails painted. I think a lot of that came from always wanting to look good for Jay, to play the part; but then it became my signature. Feels like hell, but looks great. Falling apart on the inside, but at least still pretty on the outside. It was the only thing left I could control.
“I am here to teach you,” she says. I am beginning to feel like I am in a made-for-TV movie. I see at this point that she is definitely not here about my brain, or to talk me out of worrying about it.
“Never forget the power of self,” Dr. Nittali continues.
I am slightly suspicious of Dr. Shroff’s motives in sending this mysterious, wise woman. Still, I am sitting cross-legged on my bed, a good, attentive student. Dr. Nittali is disarming, gentle, and receptive.
“Nothing is by chance,” she adds, with no further explanation. “Do you know Buddhism?”
“I do,” I say, flashing back to my teenage years when I counted mala beads and my favorite books were Be Here Now and The Jew in the Lotus. I feel its soft comfort, its familiarity, its goodness. I wonder how I drifted so far from that time in my life when I had something of such substance to cling to.
“The essence of Buddhism is the understanding that we all have the ability to transform our suffering. I study Nichiren Buddhism,” she explains. “We use daimoku, the chanting of specific words to activate joy and freedom even in the face of suffering. This chanting can reveal one’s state of inner Buddhahood: enlightenment in your own life. It is freedom. It is already there and always available. Chanting awakens us to it.”
I nod and try to take it all in.
“First, I want to share something with you to demonstrate its power,” Dr. Nittali says, launching right into a story I’m totally unprepared for.
She starts, “My husband died, twice.”
Died twice?
“He was suffering terribly with ALS, a terminal disease,” she goes on.
She explains that she tried to fill him up with love and stem cells and everything in between, but he was still declining.
She began to chant vigorously each day. But in the early morning hours of October 13 of last year, Dr. Nittali’s husband suffered cardiac arrest and died—then was miraculously revived and put on life support, with little chance of recovery and the likelihood of severe brain damage.
“But my daughter and I were confident in the power of daimoku, so we chanted with faith and conviction. We based our practice on a quote from Nichiren’s writings: Life is the most precious of all treasures. Even one day of life is worth more than ten million ryō of gold. Based on this, we prayed to prolong his life.”
They chanted for miracles.
Members and leaders of their community came to the hospital to chant with them. The group chanted in shifts around the clock to keep the energy, and him, alive.
Her eyebrows perk up at the climax of the story.
“Slowly and steadily, he began to come back to life. His faith began to regenerate. He began to chant within his heart,” she tells me. “He was released from the hospital on a small portable ventilator with no brain damage whatsoever. He had a glow on his face that was completely out of proportion to someone in intense suffering. A miracle.”
He was then transferred to Dr. Shroff’s stem cell clinic as an inpatient. And from his room, Dr. Nittali shared their practice of faith and chanting with hospital staff, other patients, their families, and visitors.
This past October, exactly one year after he beat the odds and survived, Dr. Nittali’s husband died again.
“It was not until after his second death,” she says, “that I understood he could leave only when he was sure that my daughter and I had grown in faith, enough to face the world without him.”
Faith. Appearing and reappearing. Over and over. Showing up in different forms, different words, and different offerings. It always comes back.
“Nothing is by chance,” she reminds me, finishing a story that has me caught between heartache and joy. “The Universe is shifting to bring you what you need to heal yourself, so then you will be able to move on and do bigger things.”
When she says this, I actually feel that somehow, already, she is part of my shifting.
There is no space to ask questions or express emotion before she invites me to practice.
“Now we will chant,” she says, with a slight intonation in her voice as if it could be a question. “The words are Nam myoho renge kyo.”
I don’t know what it means, but I follow her lead. We chant, first slowly and then much faster. I feel the energy shift around me. Our synchronized chanting creates a steady hum in the room, and the presence
of something transformational is palpable.
I lose all awareness of time, and when I finally open my eyes, it feels as if I’ve been somewhere else all along. Suddenly, and without much effort, I feel a sort of peace I’ve never felt before. I am no longer obsessing about the brain scan. Actually, I am hardly even thinking about anything at all—a rarity for me.
“I suggest you continue every day and stay aware of miracles,” she says as she begins to get up.
“Thank you, I will,” I promise her.
I don’t want to let this guru walk out of my room and my life forever. But I do, because it also feels wrong to clutch on to her when she has just given me what feels like everything she has.
Nam myoho renge kyo translates to “I devote myself to the Lotus Sutra,” often referred to as “the king of the sutras.” It is a scripture of hope that reminds us we all have an inherent Buddha nature, the ability to access our own deep inner wisdom and live an enlightened life.
I immediately begin to follow Dr. Nittali’s advice: chanting every day as I stay aware of miracles. And then I start to see them.
First, the terrorist rat that has been invading my room is finally caught. Thankfully, it is captured with a humane cage and let free outside—probably to return soon, but I am happy for the momentary success. It has now been proven that people and animals have at least one solid thing in common—they can’t resist a good piece of cheese. Finally, a win for the humans! It is with this accomplishment that I am able to move back into my room full-time, and can rest easy.
Second, I have discovered a microwave—on the hospital roof! I can’t believe that I’ve been struggling with food for almost six weeks now, and the answer to my problems has literally been six feet above my head all along. Up one flight of stairs, with no elevator access, and directly above my room, I’ve discovered a rooftop deck with a view of Green Park. In the far right corner, there is a small afterthought of a room that sits empty, except for a few stacks of dishes and the food-zapping wonder from home. Good-bye, one-dish kettle creations! I can now reheat my Big Chill leftovers and even make popcorn for my evening TV marathons of Family Ties, Friends, and Seinfeld. My inflatable chocolate cake can save me now in two minutes or less if I need it!
