by Amy B. Scher
I’ve been continuing my strength and balance training with Chavi. It finally seems my brain is beginning to get along with my body. I know this because my tendency to veer into walls and bump into mothers carrying small children has subsided. For the first time since I can remember, the left hemisphere of my body is flawlessly intact—no bruises, scrapes, or scratches.
Even though good things are happening, when I’m feeling sick all my improvements get buried. When I am already in a vulnerable place and then get scared, everything hopeful and positive I feel about my body’s healing ability seems to get erased. I end up triggered into fear and overwhelm, unable to separate what part of my experience is the symptoms of the disease, what part is the reactions from the treatments, and what part is the real me. Is there even a real me anymore?
The doctors here are kind, intelligent, and warm, but it is a challenge even for the best Lyme specialists at home to wrangle this disease. And now I am alone in this foreign land, where Lyme disease doesn’t even exist, trying to navigate everything by myself.
This time in India has been an unexpected emotional land mine, my feelings magnified as if they are on a dose of steroids large enough to kill a horse. And I am trying desperately to counteract this by doing what I always do—be stronger, and more in control, than my emotions. But I am ready to produce enough tears at any given moment to bathe a large village of children. I alternate between positive self-talk (It’s okay, you’ve got this) and a hearty dose of self-beration (Seriously, what is wrong with you?!). Neither is working. I am a mascara-sabotaging mess who should really buy stock in Kleenex. I feel as if some deep inner emotional beast, a side of myself that I’ve never met, has been unleashed, never to be contained again. I need a user’s manual to find its purpose, but am left to survive in these swells of unreliable emotion with no direction. I imagine my current state as an EKG graph where the doctor points to the erratic lines and says, “This line should be all within this range, but see how it’s going up and down and up and down?” Then he reaches his finger to indicate the parallel lines of the graph. “We want it more over . . . here.”
I am experiencing a discomfort I cannot seem to acclimate to or separate from. The most difficult part of this is that I have a legitimate fear of showing people my less-than-perfect self.
This emotional rawness is different from any physical pain I’ve ever endured. My body has coping mechanisms for the physical torment now. During some of my most excruciating medical tests and procedures, I managed to distract myself: eyeing the popcorn ceiling above the examination table carefully, trying to find a pattern; cooking imaginary meals in my head; or paying acute attention to each and every noise coming from the hallway. During a bone marrow biopsy years ago, I listened to the powerful, piercing click as the doctor penetrated my pelvic bone with a long hollow needle to take a sample. Despite the pain, I could still distance myself from it, visualizing the removed piece of me being replaced with the sun.
But me right now? I am losing my breath just from being stuck in my own company.
I am the easygoing one, the never-bothered one, the everything-is-great and totally together one. If ever there is someone in need, overcome with sadness, hurt or broken—I am their girl. I’ll drop, stop, and spin to light everyone else up and make them feel better. I can usually even hold myself together at the same time. But what I am just now beginning to recognize is that it sometimes takes every ounce of my effort for me to be this person.
It turns out that I am a closet control freak in serious disguise. Inside my head, I am not always so easygoing. I am constantly making plans, figuring things out, analyzing possibilities, and manipulating scenarios to be in control—because control equals safety for me. And my need for safety and stability has always taken precedence over everything else.
I believe that everyone is a mix of two people, or maybe even more: broken and whole, traumatized and fine, a mess and lovely, and, like me, carefully controlled and a free spirit. While I think some of us are born as sensitive souls, I also believe we go through life and things happen, things that make us crack. These cracks feel giant, lonely, as if we are the only one on earth with them. And when we don’t know what to do with those cracks, we do anything and everything to keep them buried. But they only grow.
The first real crack I remember is when my dad got sick. With him being up and down and our whole family living on an unpredictable wave, I turned to the conviction that if I could remain okay, we would all be okay. It was then that my need for safety, stability, and a very steady ship became most important, but also least possible to achieve.
Much of my life was about being perfect, mature, compassionate, and good—the quintessential middle child. I am not only the middle child in age, but also smack-dab in the middle of the spectrum between my siblings’ personalities. David is the baby of the family—sure, blunt, and unafraid to speak the harsh truth. He is also colossally sweet and exceptionally creative and intelligent. He was always the smartest person I knew, reading books nonstop, even while walking to his friend’s house just a few blocks away. We spent our childhood catching lizards and putting on talent shows for our parents. When I was old enough to babysit, he went with me to help. Lauren is the classic older sister. She rules the roost always, rolls her eyes often, and is the kind of sarcastic that gets you addicted to having conversations with her. We have the same cheeks and mannerisms, and laugh hysterically together until we can’t breathe. Lauren is authentically friendly, gets shit done, and plays by the rules. You won’t meet a person in the world who doesn’t say “She’s the best!” when you speak her name.
I always strived to be the perfect one, to make my mom and dad happy and proud. I had an incessant worry that I would disappoint them. This, even though they so freely poured unconditional love my way no matter what I did or said. They always made me feel like their special little girl. Smart. Funny. Uniquely me.
I admitted to no one, even myself, what was really going on in my house with my dad, or within myself. You’ve got this, my body decided without any conscious approval from me. This ship shall not rock.
It created an involuntary chain reaction within me where I lived my life in a managed, calculated way to ensure my success. I kept the cracks sealed. I started to unconsciously hold my breath. I stuffed all my feelings deep down in my body and I tried to move along with life so nobody would notice. I had anxiety about everything—that my parents would forget to pick me up from school, that our house would get robbed, that we’d get in a car crash—believing, I think, that if I worried enough, I’d catch things before they went wrong.
But there was also another side of me that coexisted, covering up those cracks. And this part of me was just as real as the other. This is the part of me that I almost always am, especially to the outside world, until now, when I’m unraveling at the seams in Delhi.
I was a fun and funny kid and made my parents laugh. I danced around to sixties music and never looked up to see who was watching. I wanted to become a veterinarian, and then be a housewife, and then decided on medical school, all by the age of eight. I had lots of friends and chased the ice cream truck with neighborhood kids. I was confident with adults, somewhat cool at school depending on whom you ask, and cheerful. I was brave, artistic, and self-assured. I genuinely loved helping people. The only requirements I had for perfection were in my own head.
I grew up and became much the same adult, splitting myself in two. I was about to turn twenty-one when I met Jay, who was older than me by seven years, the same age as Lauren. He had spiky dark hair, a pierced tongue, and a huge upper-back tattoo that announced his last name in ALL CAPITAL LETTERS.
Jay was bold. He was edgy. His feelings were big and he wore them on the outside. He drove his convertible too fast and drank his beers even faster. But for every cool, bad-boy character trait Jay had, there was an intelligent and sensitive one. He painted my toenails and watched B movies on the Hallmark channel with me all weekend. We contemp
lated deep existential questions: the meaning of life and the concept of karma. His grandma had taught him how to cook, and in turn, he taught me. He also made the best Bloody Mary you’ve ever had with just the right amount of kick and double the celery, no olives, just the way I like them.
Jay didn’t care what anyone thought about him or what he was doing with his life. He was the opposite of everything I want to run from in myself, because Jay was not worried about being safe and perfect. Jay was just Jay. He was the opposite of me, which made him a magnet for me.
He showed me that life is meant to be fun, from our very first date on a weeknight when we didn’t keep track of our beer tab, the number of chicken wing orders, or the clock. We kissed like we were the only two people at the pub. He said no to friends and family without guilt, left work at exactly five o’clock, and treated every day like Friday. Life was a party boat! I jumped on board like it could not capsize.
I decided I would be free, like Jay. I would not worry, like him. I would not care, like him. I would even occasionally forget that my dad, who was now sometimes suicidal from the depression and fatigue, might or might not be alive at any given moment.
I was never without a drink in my hand after work and on the weekends—champagne, Malibu rum, or both. At Jay’s encouragement, I stopped flat-ironing my hair, let it curl wildly, and bleached it blond. I traded in my clear gloss for dark crimson lipstick. I wore tighter and trendier clothes. This new life worked. I had never felt so free. But the catch was that I had to keep it up. And the problem that I couldn’t see at the time was that this wasn’t me. The free girl inside, she was all me. But what I had to do to get her out was not.
It was the summer of 2005, five years after Jay and I started dating, when my life busted open at every possible seam.
Mexico and margaritas: the perfect combination. I was sitting in the bubbling hot tub at our gorgeous hotel in Puerto Vallarta, a frosty pink salt-rimmed drink in my hand, watching the sun kiss the beach and sweep the sky. The soft breeze was carrying all my worries away as I swirled my legs around in the water, admiring my cotton-candy-pink nail polish, which matched exactly how I felt. Jay was by my side sipping his own drink, brimming with genuine contentment. Latin music hummed at just the right volume.
This is usually the time in the story when the narrator says, I never saw it coming. I think, though, I actually did see things coming, but was a well-trained expert at ignoring them. I have always been very good at not noticing things that I am noticing, if by actually noticing them, my life might get too hard.
It was there in that Jacuzzi in Mexico that my body was about to hijack my life; I’m sure, because I never would have done it on my own.
I was suddenly startled by stabbing pains, from my knees down to my petite feet. “I can’t move!” I screamed to Jay, becoming quickly frozen in temporary paralysis. Heat rushed up through my head, making me dizzy, my entire being burning with pure, raging panic. My mind couldn’t keep up with what I was feeling—fear, pain, confusion. And in the two minutes we were nervously discussing what could be going on (dehydration! muscle cramps! too much tequila!), the overwhelming pain began to pass. I lifted myself from the water, never releasing my drink from my fingertips.
I think that all the cracks I’d been avoiding for my whole life showed up in my legs all at once. It was only six months later that I was bedridden and begging Jay to cut my legs off.
Here in India, even my cracks are cracking. Everything is erratic, uncertain, and unsafe—including myself. The unstable, sensitive me that I wanted no one to see is pouring out uncontrollably. I am the opposite of what I’ve worked hard for my entire existence.
What I wish I’d known at this time in my life is that everyone is perfectly fractured. The cracks that I thought were only inside of me are the same cracks that everyone has. And both the cracks and the repair work are half the point of life itself. There is really nothing to run from, nothing to resist at all. But I don’t have a clue about any of that in the moments that I’m bawling in the shower louder than the barking dogs in the alley, staring numbly out my window into a world full of tuk-tuk madness and monkeys, and being sent away from physio because I can’t stop crying long enough to complete even a single leg lift.
I hesitantly divulge to Dr. Ashish how I feel and find the slightest sense of relief when he tells me, “It is common to have exaggerated emotions with stem cells!” I almost cry (surprise!) at his confirmation.
But I can feel that this is not just stem cells. Maybe the stem cells have pushed open the floodgates, but there is a deep well of emotion that has been sloshing around for a long, long time. Perhaps it is only some ten thousand miles from home that I am finally willing to let it rise.
“Keep your eye on the prize of health!” Dr. Ashish exclaims through his pearly white grin. He reminds me that I have to be gentle with myself, remain positive, and nourish my cells in every way I can. I’ve always considered myself a positive thinker, proud of how I tend to see, or maybe force myself to see, the glass half full. But I am not great at being kind and gentle with myself. I am not sure how this happened, or when, but the names I call myself and the things I tell myself are not anything I’d ever say to another person. In fact, I never allow myself any slack, a break, the luxury of changing my mind, or an excuse to fall off the perfection wagon. Even so, Dr. Ashish has a way about him that convinces me being softer is the only way to proceed, so onward I’ll try.
In fact, I have already started this mission. I’ve been reading The Hidden Messages in Water by the Japanese scientist Masaru Emoto. I tucked this thin book in my suitcase before I left, as a “maybe I’ll finally get to this” token gesture.
In the book, Dr. Emoto collects water from various environments and looks at it under a microscope. He takes pictures to show how the molecules react to heavy metal music, positive words, and more. The results are freaky—negative words create muddied-looking asymmetrical patterns, and loving ones create gorgeous crystal formations that resemble snowflakes. The cells in our body are, in large part, water. That means whatever words and emotions influence water, also influence me. This is my first hint of understanding that all the pressure I put on myself to be perfect, for me and for everyone else, has got to change.
After my talk with Dr. Ashish, I commit to reading a little from the book every single day. Instead of entertaining my constant fears, frustrations, and failures, I will focus on what causes magnificent crystals to form: gentleness, love, and compassion. What I learn from this book will turn out to be only one microprint in my slow evolution toward internal transformation. Reading it may not create a dramatic turn in events that carries me along with ease from this point on, but I sense it is doing me some sort of good.
While my relationship with Dr. Ashish is effortless and an absolute joy, my interactions with Dr. Shroff are another story (read: complicated).
It feels like she has chosen me as her pet project, continuously giving me unsolicited pep talks and advice about my personal power to heal.
“The stem cells can do their part, but you have the power to heal yourself,” she tells me one day when I’m trying not to topple off the steps in physio, struggling with intolerable fatigue, and fighting back tears. Then she adds, “You have much more power than you think.”
“Amy, remember, you can’t be too nice in life or you’ll lose yourself,” she preaches to me another day in the hallway when I share that I’m worried about a sick friend back home.
The next day when we meet in the hospital lobby, she starts again. “Are you doing better today? Remember, carrying the problems of the world is not a good trait and results in the breakdown of the body.” She cheerfully walks away, leaving me with a citation for bad behavior.
“The stem cells can do their part, but you have the power to heal yourself,” Dr. Shroff repeats almost daily now, like a broken record I desperately want to stop. My deepest gratitude for her alternates with my intense resentment toward her for pushing w
hat I so naively label Eastern philosophical bullshit. In my delicate mental state, I make master plans to dodge her passing presence in the hallways in order to avoid a total meltdown. She seems to believe that I have some superhuman healing power, which, if true, I can’t find anywhere. My room looks like a bomb hit it, I sarcastically think during our conversations. Maybe my power is under my laundry. Also, Why the fuck am I here if I can heal myself?
I’m immersed in an Eastern culture where it is believed that karma plays a part in everything, the mind is undoubtedly the root of any challenge, and if you want something badly enough, you can have it—or if you don’t want something, you can wish it away. Of course I desperately want to wish my illness away. So if I can’t, where does that leave me?
I wish I could be one of those totally Zen people who are undisturbed by the world around them. I want to weather these storms gracefully and peacefully . . . maybe meditating or sitting in a yoga pose until they pass. Unfortunately, I am the opposite of this right now. I am shaken to the core and my tethers to sanity are slowly slipping away. It has become apparent to me how the amenities and consistencies of home swaddle me in comfort. I think, if someone were complaining to me about these very things that are tormenting me now, I would say to them, “But you might get to live! How bad can the food be? Wear some headphones for the noise! Crying won’t kill you!” And maybe even, in a less than compassionate moment, “GET YOURSELF TOGETHER.” This is always how it goes, though. It’s like sitting in your air-conditioned house deciding you can totally handle camping in the searing desert heat of California’s Death Valley. You understand the idea of no running water, a blazing sun, and little shelter, but you think, I’ll drink cold drinks, I’ll wear a hat, I’ll be fine. And then you get there and are trapped in a sweaty, suffocating tent where you can hardly breathe. The point is, shit gets real when it’s actually happening.
