by Amy B. Scher
And last, but not least, after just two days, the fire in my brain subsides. My head feels like it has released ten pounds of mental pressure. The uncontrollable angst rushing through me turns off like a water spigot that has run dry. None of it exists anymore.
The erratic ups and downs of the past few weeks have been draining, frustrating, and disheartening. But it is becoming clear that I still need them. I need them because it is only through them that I come out with new perspective, confidence, and hope. I need them because they break me from my desire for control, when I cannot break it for myself. I need them, because without them, I am without the impetus to push myself forward.
Each night, staring at the bright blue wall in my hospital room, I chant myself to sleep.
Nam myoho renge kyo.
I chant because, from day to day, my stillness is still so fragile.
Nam myoho renge kyo.
I chant because somewhere inside me, they say, my enlightened self resides.
Nam myoho renge kyo.
I chant because if there really is a way to transform my own suffering, I want it.
Nam myoho renge kyo.
I chant because I am starting to see that when my brain is on fire, I am the extinguisher.
7
Take It
WEEK SIX
I am dying. This is the end. My body is giving up or something is killing me. These are the recurring thoughts that I have for almost three days straight during my sixth week in India while I am hanging over the toilet bowl vomiting uncontrollably.
I focus my gaze on my little elephant figurine on the bathroom windowsill, glowing with her brilliant colors and confidence. I need to be reminded of overcoming obstacles pretty much all the time here, but especially right now.
I am shaking, sweating, and so disoriented that I can’t see where the door is. Whatever has gotten me is destroying me quickly.
Three sisters are standing over me debating what to do.
“She look sooooo sick,” they chatter to each other in their small, kind voices, with their heads turned away as if I can’t hear them. “Should we call doctor now?” They discuss. Then a long pause ensues while they watch me eject my insides. Again and again.
In between rounds of throwing up, and without full coherence, my brain launches into autosearch mode trying to figure out why this is happening. Craziness ensues.
Could it be the malaria-prevention pills I’ve had to take here?
Is it a side effect of my high-dose IV antibiotics?
A reaction to the stem cells?
Wait! I bet it’s yeast overgrowth in my body.
A herx reaction?
Yes, that’s probably it.
Or maybe not.
Is my body telling me I need a break?
Or that it needs something else?
Is my body saying anything at all?
I have figure-it-out fatigue. Decoding my body is officially a job I don’t want anymore. After years of being unsuccessful, it is clear I’m not very good at it anyway.
I give up.
In times like this, I often run to my parents—not because they’ll have any answers, but because they always make me feel better. I realize that now, even when I’m a grown woman, they are still my biggest source of comfort.
But, as planned, they left for home a few days ago, so I am entirely alone in India now. Our last big hurrah was dinner at the splashy Taj Palace Hotel, where we devoured fresh seafood from Mumbai and crisp, chilled white wine. When the day finally came for them to leave, after six weeks of family bonding, insane ups and downs, and incredible excursions, I was surprised at how ready I was. Not because I didn’t want them here, but because the roots I’ve grown in Delhi would help me make it on my own. We kissed good-bye and nobody cried. Because in saying good-bye, there was infinitely less to cry about than six weeks ago when we first said hello to India together.
But now, in this bathroom, I want them back badly. I am weak, scared, and afraid I might never see them again.
“I seeeee. . . .” One of the sisters quickly points at me and then turns to the other two, circling around her eyes with her fingertip. She whispers loudly to them, “She not have any makeup on. Ah!” They all sigh in dramatic relief, realizing that I might not be quite as badly off as I seem. Apparently, my face without makeup is more worrisome and shocking than me vomiting uncontrollably right in front of their eyes.
This is the first time anyone here has seen me without makeup, stripped of mascara and, seemingly, any eyelashes. In fact, this is one of the few times anyone except my family has seen me without makeup. This is what I actually look like when I’m not trying to look perfectly held together.
It is not long before Dr. Ashish and Dr. Shroff are both at the doorway.
“This looks like Delhi belly, yes?” Dr. Ashish and Dr. Shroff mumble to each other, with grave concern on their faces. Delhi belly is the dreaded curse caused by eating contaminated food or drinking unfiltered water here. It is beyond my comprehension that anything could be powerful enough to be doing this to me. It is also beyond my comprehension that I could have contracted this in the first place.
I’ve survived almost two months with the alluring smell of street vendor food and didn’t cave in and taste a single thing. I peel or boil everything I put in my mouth. I only go to restaurants that serve bottled water on the tables and use filtered water in the kitchen. I brush my teeth with bottled water and pour scorching water from my teapot over the dishes I wash in the shower with tap water. I use antibacterial wipes on my hands (and my fruit) obsessively. And the staff makes all the food I eat here in the hospital.
But if this really is Delhi belly, it should be the world’s most sought-after biological weapon. It. Is. Brutal.
The irony of this is that I have finally fallen in love with Indian food! The meals they have been sending from the other hospital are phenomenal. It turns out that Indian food not only satisfies my taste buds, it also helps me feel integrated into this country. I even bought some spices from the market to bring home.
All the Delhi-related enamor that I’ve built up over the past six weeks instantly disappears with this last gift the city has given me. I am back to asking this very real question: How many more days can I take in this polluted city so far from the sunshine of California, my own doctors, and the arms of my favorite people?
Hooked up to an IV of fluids, I sleep sitting up in case I have to run into the bathroom in a hurry. At one point, I’m too weak to make it and get sick into a plastic bag hanging on the end of my bed. My new nose ring plunges in and, after temporarily considering its retrieval, I deem it a lost cause. If I survive this, I will get a shiny new nose ring to celebrate.
It takes a carousel of nurses, doctors, and antivomiting medication before things begin to calm down . . . an entire forty-eight hours after it started. I can finally eat tiny bites of chapati, sip water infused with electrolytes, and not worry that I will be dead soon.
After living with Lyme disease for so long, I have become accustomed to how delicate my body is. Sometimes I am weathered and worn even after a choppy car ride. I cannot imagine recovering from this battering. I predict that my hips will hurt from kneeling on the cold bathroom floor, the Lyme will rear its ugly head because of the stress on my immune system, my ribs and back will feel cracked from overexertion, and my stomach, raw from all the medications I’ve taken over the years, might never be able to handle an Indian spice again.
When I wake up on day three, fully prepared to be debilitated, I am astonished. I open my eyes, touch my feet to the floor, and walk effortlessly to the bathroom. I stand over the sink and look deep into the mirror, gaze fixed on a face that is the same face of the day before, but also different. I put toothpaste on my toothbrush and pour bottled water over it.
It is with a mouth full of foamy toothpaste that it hits me. I have awoken for the first day in years without any conscious awareness of being sick. When I focus on the feeling, I disc
over that I am not without physical symptoms—but I have a clear feeling that I am no longer illness itself. What I have on this day is a distinct feeling of health, the one I’m always seeking, the one that’s been missing from inside of me for as long as I can remember. This is it.
I know what I have to do next.
Still in my pajamas, I throw on my shoes and run downstairs to find Dr. Shroff. Despite all our conflicts and tensions, she is still the first one I want to see. All my bitterness toward her for the nagging lectures has disappeared. It is wherever my nose ring is now. I am not sure exactly why I have this sudden need for her, but all I know in this moment is that I do.
“Dr. Shroff!” I call as I see her in the lobby. I am discombobulated and disheveled. I am also overjoyed. “I think I am better!”
“I do too,” she says calmly, smiling, as if she knew it all along. Her cheeks are full and she lights up.
Saying this out loud makes it real. This feeling is what I’ve been chasing and what I want. But this feeling is also something that I am scared of. Because, what if it doesn’t last? And . . . what if it does? This feeling changes everything.
It’s the first time I’ve had this feeling in as long as I can remember, but it’s not the first time someone has tried to convince me that I should be feeling it.
It was almost two years ago that Jay and I took a Hail Mary trip to Chicago, where the winds are so powerful they slap your face and you have to lean into them as you walk just to keep your balance. I had officially grown out of treatment options in California.
Northwestern Memorial Hospital is on the Magnificent Mile, an upscale section of the city’s infamous Michigan Avenue. The hospital is home to a stem cell transplant program for autoimmune diseases.
During a late-night Internet search, Jay discovered a blog written by a woman with health issues similar to mine. Her story included a stem cell transplant with Dr. Yu at Northwestern. This type of stem cell transplant, used only under very specific circumstances, requires patients to undergo intense chemotherapy treatment to kill off a dysfunctional immune system in order to build a new and mightier one.
The treatment was hard-core in both commitment and promise—and I was honestly worried that I didn’t have the will for it. But Jay never entertained that possibility. In Jay’s eyes, there was never anything I couldn’t do. Even though I sometimes doubted how happy he was in our relationship, I never doubted that he loved me. He was always trying to find a way for me to live.
It was on the third day at Northwestern, after thorough exams and blood work, when the head of the department, Dr. Yu, broke the news to us.
“Your case is too complex,” he said in a thick Japanese accent.
I was a case, not a person anymore.
I was too sick to survive the treatment, he explained. “Your body is not strong enough to withstand the chemotherapy. You would need to start off in better shape to make it through,” he told me with a drooping face full of regret.
Although I accepted his recommendation as a patient, I did not accept it as a human being. How could I have to be in “better shape” to be salvageable? If I were in better shape, I wouldn’t need a new immune system.
A month later, the phone rang and I picked it up to hear Dr. Yu’s voice on the other end. I momentarily thought he was calling to say we should give the treatment a try. Maybe he had changed his mind. But Dr. Yu was calling to tell me he was moving to Japan. We would end up losing touch after this call; but before that, he proposed an idea.
“I think you should go to Mayo Clinic in Minnesota! They will know how to handle you there. There is something that we are missing.”
That is how I ended up at the Mayo Clinic two months later, eating radioactive scrambled eggs for breakfast.
The Mayo Clinic in Rochester, Minnesota, is the crème de la crème, the Ritz-Carlton of hospitals. It’s as shiny on the inside as it is on the outside. The floors look like they have been polished for days. The clinic, ten million square feet over the entire medical campus, is an entire city for sick people. There are more than thirty thousand medical staff employed. Chandeliers hang from the ceilings. My hopes were pinned higher than the highest key on the baby grand piano in the lobby. I was conquering a whole new state, rotating through a lineup of different specialists over a week’s time, so they could work together to figure out the puzzle of my health.
“Bon appétit!” the nurse shrieked, her brunette curls bouncing as she shrugged her shoulders with excitement. Reaching over to my mouth with her gloved hand, she instructed me to open wide. “Ahhhh,” she mouthed, showing me how.
This was my first test of the day, a gastric emptying study, to try to identify the cause for the near-constant nausea I’d had on and off for years. The radioactive eggs would light up through my digestive system and be captured through several scans. Yep, the eggs were literally radioactive.
“It’s like poison,” she said, smiling. “They can’t touch your lips or my hands.”
Yum! A radioactive blue plate special, I thought as I opened my mouth, closed my eyes, and swallowed.
There were many tests and doctor visits at the Mayo Clinic, but what happened in the neurology department turned out to be a completely unpredictable plot twist. Inconceivable, in fact.
“We start from scratch here. I don’t need these!” the lanky neurologist barked at me with a hearty Italian accent. Her short, dark hair quivered in response, right along with me. She slammed my sacred medical binder of records shut and handed it back to me.
Mom was sitting on the stool in the corner, stiff and uncomfortable. Dad was at the nicotine clinic for his on-again, off-again smoking habit; but I wondered if he’d be able to crack the doctor if he was here. He could make anyone soften. We needed him now.
I was convinced that Dr. Downer (full disclosure: this is not her real name) was a robot with a computerized brain, complete with a library of medical knowledge but no emotional backup drive.
I was used to being babied by my doctors. They usually hugged me when I cried. She didn’t seem to want to know me, or care if I thought one way or another about her. She cared about diagnostic testing. She cared about what my symptoms were and nothing else.
When she was done with my consultation, she handed me a list of tests I’d never heard of and told me to return the next day when they were complete. “See you tomorrow,” she said as she left the room. Still, we got not even a hint of a real live person.
The next day, I returned to a diagnosis I’d never received before. It was the opposite of anything I could have imagined. It remains, to this day, the most unthinkable pronouncement I would ever get.
Diagnosis: normal.
“You are out of shape,” Dr. Downer said with no excitement or bewilderment at all. “Severely deconditioned, but otherwise fine,” she confirmed.
She started to rattle off proof. “Your blood counts are normal, your inflammation markers are normal, your urine analysis is normal. Your nerve studies are also normal.”
Three months earlier in Chicago, I was too weak to survive a treatment, and now I was normal?
I sat cold and unable to speak. Mom gasped, and I thought I heard an “Oy vey.”
I stayed quiet with her pause.
“Your problem has been a combination of things, but now you are fine,” Dr. Downer wrapped up.
“So . . .” I started, planning to recap, but couldn’t. “I don’t understand,” I finished, a little bit scared of her reaction.
“Your problems now are due simply to a severely deconditioned body. It is using every ounce of strength just to maintain function. A vicious cycle. Okay?” she said sharply, biting her lip and at the end of her patience. “Pain from the disease caused lack of activity, which caused atrophy, resulting in more pain.”
It began to sink in. Dr. Downer was telling me that, despite feeling sick, tired, and miserable, I was . . . disease-free.
“You will make a full recovery,” she promised with certainty
, slapping her hand on my patient folder to signal that the conversation was over. Case closed.
As she started to stand up from her chair, I finally broke my silence.
“How did you find this but no one else has? Why did the tests keep finding abnormalities if I’m okay? Are you sure?” I asked in succession, my onslaught of questions coming faster than my brain could process them. How could other doctors have found so many problems and she had not?
“Whatever you had is now gone,” she repeated, refusing to discuss at any length what anyone else had found. “I am only able to confirm that you are now disease-free.”
I began to cry in overwhelm as Dr. Downer watched, her eyebrows furrowed. Her days were usually spent diagnosing some of the world’s most terrible illnesses.
I was her lucky day, and she was not going to let me ruin it for her.
“Do you want me to tell you something bad? Would you be happy then?” she questioned with cynicism. “You require a serious pain-rehabilitation program, consisting of major physical therapy. You can start with aquatic therapy, if you must. But we will get you back! Do you want this?!” she yelled like a drill sergeant.
These were the words I heard next, from inside my head: You are at the Mayo They are the best. They are the best in the world and the Mayo doesn’t lie. THIS IS WHAT YOU WANT. JUST TAKE IT, YA CRAZY JUST TAKE IT.
It felt like an hour had passed, but it was only seconds before I answered, “Yes, that is what I want.” Mom nodded in eager support. We were all on board.
When I agreed to be cured with no reasonable explanation and to accept her wisdom as my own convenient truth, she seemed to move slightly closer to some version of compassion. Dr. Downer had just one final set of instructions: “There is only one thing you can do now: stop being sick and heal.” She said this as if it were so simple and obvious, it made me momentarily question what I had been wasting my time doing all of these years.
