by Amy B. Scher
“Let’s go,” she says. It’s time for the next part of the orientation tour! “We will go to physio.”
I am still processing all the information as we take the stuffy elevator down to the basement physical therapy room, called physio here. It’s a large room, dripping with cheery colors that tend more toward neon than primary—fluorescent yellows and brilliant blues that could blind the disease right out of you. Hindi rap music sets the mood, reverberating through the floor, up through my feet. There are other patients well into their sessions. Nyla, a young Indian woman who is rail-thin and frail, is getting this therapy for a heart condition. She doesn’t speak English, but smiles when we’re introduced. Brian, a twentysomething guy from Australia, is trying to regain use of his legs after a motorcycle accident. He dances with his shoulders and chest, the rest of his body paralyzed and lifeless. An older man, Bob, is using calipers (the Indian version of leg braces) to stand for the first time since he was paralyzed, admiring his accomplishment in the full-length mirror.
The room is busy—the patients and staff are laughing, some are sweating, and I am tired just looking around. I haven’t exercised in longer than I can remember. In fact, the last time I did physical therapy, I was too sick and weak to do anything on land so I was prescribed aquatic therapy—a.k.a. “pool school.” Five days a week at the physical therapy center, I climbed into the pool, four feet deep and a delightful ninety-four degrees. It was pure relief to my aching body. My pool mates were sick and mostly over seventy, except for the teacher, whose job it was to make sure we didn’t drown, and to direct us toward the proper way of doing leg lifts and shoulder shrugs. There was always someone in class cheating, which seemed a total waste of cheating to me. It was pretty much a chlorine melting pot of complainers: Gretchen, who hated her grown kids and had two bad knees; Tom, who hated Gretchen; and Sally, who drove fifteen minutes to get there and spent the first fifteen minutes complaining about her ride. I was not a fan of the group format. In fact, I had only one comrade: eighty-two-year-old Art, who towered over me (although that doesn’t take much) and was built like a linebacker. The first time I met Art, I kind of fell in love with him—which is awkward, because when you meet people at pool school, you’re both half-naked. He called our pool school buddies “a bunch of hoodlums,” and I agreed. He reminded me of Poppy, never taking himself or anything too seriously. Art sported a huge scar from his belly button ascending into the middle of his chest. “I survived some crazy shit,” he told me that first day in the locker area. “Almost died,” he said, as if the issue were no bigger deal than the weightless leg lifts we’d just done. “Then, after open heart surgery, they finally sewed me up, and I had the most powerful sneeze ever. Those damn stitches unripped like a zipper right up me.” Art laughed deeply, like he was hearing about his own ridiculous bad luck for the first time. Every day when we said good-bye, he’d tell me, “Wear your sweatshirt, kid. Things can change pretty fast out there when you least expect it. Life can be funny that way.” Still some of my favorite advice.
Here in this physio room, I am happy to see the crowd is mostly under seventy and no one is wearing a bathing suit. I heave a deep sigh of relief when I realize each patient has his or her very own physical therapist, and there are no group lessons! I am winning already.
Dr. Shroff introduces me to Chavi, who will be my physical therapist for the entire eight weeks I’m here. She is almost exactly my height, with long, jet-black hair, perfectly aligned teeth, and a round friendly face. She shakes my hand lightly and giggles.
“Let’s see what you can do. Fine?” Chavi directs, patting the bed next to her for me to lie down on. Every time she moves my legs even an inch, she smiles at me and says, “Fine?” People here use the word “fine” in abundance, just as we say “okay?” I’ve already caught on. They understand that “fine” means move on, all done, it’s all good, and a host of other things. It gets the point across for almost anything.
The truth is that I haven’t been fine with anything for a long, long time—my life, my body, or especially my legs. These legs that are supposed to keep me up have only dragged me down. Their message: You have no hope to stand on. It was early 2006, only two years earlier, that I wanted nothing to do with them ever again—my own legs, my mortal enemies.
My parents’ back bedroom, which used to belong to my older sister, had become an infirmary where my failing body and the fiercest part of my spirit were housed. Jay and I had moved in when we realized we needed help—financially and emotionally—to be able to survive this new life with my illness.
“You have to do it . . . pleeeease,” I begged, lying in the bedroom one evening. That day felt so long it seemed that three days had been crammed into one.
My eyes barely open, thrashing my helpless legs around hard in the tangled sheets, I wailed. I tried my plea again, with added determination. “Cut them off!”
Sitting on the edge of the bed, Jay stared somewhere beyond me. His emotional pain matched my physical pain, but he didn’t respond to me at all.
“Do it for me . . . you have to,” I sobbed. “I need you to do this.”
I don’t know what kind of woman begs a man to cut off her legs. I only know that I would have never imagined myself to be her. But somehow, in my desperate and daring state, removing my limbs seemed the only solution to end my unthinkable, atrocious, dire pain.
Searing, slashing, stabbing, burning, without warning. It felt like a villain from a horror movie was hammering nails into my legs, deeper and harder to test my ability for survival. This agony was caused by a rare form of neuropathy, which is, essentially, damage to the nerves. For months nonstop, I’d been taking eighteen narcotic painkillers in each twenty-four-hour period, yet they hardly touched this pain. The outer sheath of my nerves was unraveling, and doctors couldn’t figure out how to stop it. Life was a brand-new kind of impossible.
Removing my legs, I was convinced, was the only logical option. The only option left, really, to save me from the torture. I was fully aware of what I was asking—the seriousness of it, the grossness of it, the sadness of it—but that didn’t slow me down. This dramatic episode was not new in our bedroom, but it is the worst I will ever remember.
This man had helped me take baths and restitched my leg with his bare hands after a botched muscle biopsy, and was just as terrified as I was about my future. If anyone would get it, it would be him. He would see my logic, I believed, because I am a logical person and because there was no other choice. He would find solace in the fact that I didn’t want to end my life. I didn’t want to die. I was only asking for my legs to be removed. The only thing I needed was for him to do it.
Turning to me, he finally met my eyes and seemed to absorb what I was asking. He broke. A tear rolled out of each eye. The wetness of his face unexpectedly woke me into reality. I put a halt to my pleading, spontaneously and involuntarily, as if a wall with the word STOP moved quickly to meet me. Stop. Just stop. Stop it, I heard in my head.
“No,” Jay said, the tears coming faster and faster. He would not cut off my legs.
What I realized in that moment is that there are many things we do for love. We will forgo our lives to help another person go on. We will sit by and watch the demise of another’s lovely body, anchoring ourselves into happier memories just to survive it. We will tell ourselves that one day, soon, everything will be fine!, even though we know it probably won’t be. But there are many things, because of love, we just cannot do. His tears hit my calves, and for only a few seconds, I was grateful I still had them.
In a lifetime of moments, we accrue many ugly ones. It is these moments—the ones that immediately jump to mind in a mental review of our lives—that carry the most shame with them. This is not because we necessarily behaved badly or wrongly, but because we allowed our scariest human insides to show on the outside. The unfiltered-ness of ourselves seeps out. Jay was the person who witnessed the deepest and most desperate parts of me at the exact same time that I dis
covered them for myself. When there is another person to witness the ugly, you are forced to stare yourself down, right where you are—out in the wide-open, bare to those beside you. Those moments become a crack in your heart, a nail in your coffin, a smudge in your otherwise shiny past. Begging Jay to cut off my legs with his own bare hands will always be my most glaring queen of ugly in a timeline of many. His witness to my insides still shakes me as I watch Chavi twist my legs and measure my nonexistent muscles. Jay and I hardly speak anymore, but I still feel that day strung between us.
Here in physio, I am forced to face the legs I have felt so resentful toward and detached from. As I watch Chavi bending and stretching my deconditioned body, I suddenly understand. When you really love something, you have to be Jay. You have to say no to removing the parts that are ugly. You have to say yes: yes to acceptance, yes to the ugly, and yes to love.
When Dr. Shroff asks if I can get off the physio bed and stand, I do it. I own each foot as it hits the floor. These are my first moments of forgiving my legs, in all of their hideous glory. After years of wishing them away, I take them as mine, just as Jay did.
I try to walk in a line with my eyes open, then with my eyes closed. I fail horribly—veering to the left like a drunken sailor, without the hat or the fun of a drink. The left side of my body is full of bruises from the constant deviations when I can’t quite control my stride and accidentally bump into parked cars, unsuspecting furniture, or walls. This impaired balance is caused by decreased blood flow and oxygen to my brain and is a common neurologic symptom in patients with late-stage Lyme disease. Over time, it can cause irreversible brain damage. The symptoms include memory loss, sleep disturbance, fatigue, depression, and, as is on show here, wonky balance. I lean on a chair to catch myself and cock my head with a smile at Dr. Shroff. I’m taking this balancing defeat more lightly than usual because I’m hoping it will be fixed soon.
Dr. Shroff isn’t shocked, bothered, or intimidated by any of what I cannot do. She doesn’t compare me to the other patients, tell me I’m the worst case of this-or-that that she’s ever seen, say that this will be difficult to fix, or anything I’ve heard from doctors in the past. She also doesn’t compare me to my old self, because she has no idea that I was once a person who would hike every weekend, with stamina that my now twenty-pounds-underweight body could never endure. She makes no comments and shows no emotional reactions as she watches me fail, exercise after exercise. Instead of being self-conscious, I find comfort in her blasé observation of me and my dysfunction.
The first days in physio will begin the rebuilding of many things: my muscles and my strength, but mostly the slow awakening of my own self-acceptance—the subtle sense that something inside of me is already more okay than I ever thought.
“I’ll see you here tomorrow, fine?” Dr. Shroff says, jotting down a quick note. “Fine!” I confirm. She smiles at Chavi and me and walks away.
• • •
“ARE YOU READY?!” Dr. Ashish asks with almost a song, holding the golden needle with a dose of stem cells in his sturdy hand. I am surprised at how fast things are moving here. India does not allow for gentle acclimations. Everything is rushing toward me. I just got here yesterday, am admittedly still slightly worried about tumors, and am jet-lagged beyond recognition. I am not by any means ready. But I agree because it is both too early and too late in this game to not be ready.
Dr. Ashish is buoyant. His glasses magnify the excitement in his eyes as he gives the needle the attention it deserves, holding it to the light and beaming at it proudly. It is already time for my very first dose of stem cells and apparently Dr. Ashish is The Man when it comes to this department. Following him is a gang of sisters to assist. I’m excited! I’m hopeful! I am nervous this could kill me!
My parents are sitting in the corner of my hospital room, Dad aiming his camera at the significant moment that is about to occur. He bought a new camera for this trip and has three different manuals and six lenses laid out in front of him. He tells me that he is using both the constant shooting mode and the filming mode. He has prepared to capture this momentous occasion in every way possible. Dr. Ashish is impressed. “Isn’t that clever!” he says. My mom is overwhelmed with emotion, lips pressed tight, as if she’s about to witness a birth. She could care less about the camera’s advanced functions.
“We are doing a test dose only to make sure there is no reaction,” Dr. Ashish says. He delivers this news with a look of concern, brow furrowed, and I feel myself worry. “We are looking for a rash at the injection site,” he finishes. A laugh breaks through my lips. After all I’ve been through, a rash would be the least of my problems.
There are three parts to making sure these cells have the best chance, Dr. Ashish explains. “They will be influenced in part by physiotherapy, part will be your mind and spirit, and the rest will be how your body reacts on its own: fate.” He is counting the parts off on his fingers as he speaks. “Your attitude, nurturing, and positivity must be there! You have an approximate twenty percent influence,” Dr. Ashish specifies deliberately with great intent.
“These cells are immature and need to be trained to function properly. Embryonic, if you will!” Dr. Ashish waits for us to laugh at his joke. I feel Dad zoom in on my face with his super-lens.
“I understand,” I promise. I don’t take it on, but I do take it in. “These cells will have a good home.”
I feel a twinge of emotion in my chest and a sting in my throat like I might cry. I hold back. I can’t wait until he does the injection and they are mine to keep.
Slowly, Dr. Ashish wipes the inside of my right bicep to prepare for the injection. “This will be a prick,” he explains. I feel my dad zooming in from behind the camera. Dr. Ashish finally, slowly injects a syringe full of clear liquid into my arm. “Fine?!” he asks. I feel nothing and am slightly let down by how fast the moment passes. There is no rainbow that appears over me, no Oompa-Loompas who come out singing, and no confetti that falls from the sky.
“Fine!” I tell him.
“Now, we cannot know exactly where these cells will go!” he says. “They will find homes in the tissues where they are needed to begin regeneration. Very intelligent.”
I hope this isn’t like when you lose weight and try so hard to direct any fat-burning to your hips, thighs, and stomach—but your body decides to target it all to your boobs. I send a silent message to the stem cells in case they are listening: Ignore my boobs. Please go directly to my legs.
These cells will be administered daily, first by injection like now and then by IV so they can give me larger doses. As he leaves, Dr. Ashish gives me a list of directions: eat more than normal, don’t do anything that might harm the stem cells, and get plenty of rest. I am already nervous that I’ll tilt the cells the wrong way or something and screw this up. This treatment has to work.
I lie perfectly still and try to settle into the moment, listening to my parents’ comforting chatter in the background, but the rambunctious street below is roaring. I picture it celebrating with me. India is calling me out of my room, out to meet my brand-new city.
Two extra Percocet and twenty minutes later, the three of us are jammed in the bench seat of a tuk-tuk for a windblown, loud, wild ride to a local market. When I was growing up, we would set off on family drives with no predetermined destination, sometimes getting lost in exploration. As we kids started to get nervous about being in the middle of nowhere, my dad would lighten the mood and say, “It’s just a zoomy ride!” But this ride has been a zoomy one from the start and Dad is holding on for dear life. I guess a zoomy ride is not as fun when you’re not behind the wheel. This open-air cart feels like it could tip every time it turns a corner, and none of us know our way. The sky is black, full of soot, as if a chemical storm is brewing, and the only discernible marker of where we are is the sun behind it, which is a vivid blood orange.
The market has the look and feel of a traditional rural village bazaar. There are rows of colorful
stalls squished right up next to each other, arranged around a dusty courtyard. Children hustle beaded necklaces that hang from their arms, men sell roasted sweet potatoes, and women chat. Every woman in India is draped in gorgeous fabrics and jewelry, with perfectly done hair. I am wearing jeans, a hoodie, and a backpack. None of me is sparkling, shining, or shimmering.
The market allots stalls to craftspeople from different parts of India on a rotational basis of fifteen days, so there is always something new for visitors to marvel at. Inside, people are busily shopping for handicrafts and the vendors call us into their stalls as we meander, offering us a variety of things they are convinced we need.
“Hello, ma’am! You must see my stepstool!” one woman hollers, stepping up and down from it repeatedly as if it’s the perfect makeshift exercise stair-stepper. Another lady, holding a giant men’s T-shirt, calls to me: “Ma’am, this shirt has been waiting for you! Take a look, ma’am.” I am overpowered and underprepared for this experience. There are people coming at me from every direction. When I turn around to find my parents, I see my dad playing a flute in front of the next booth—a crowd of Indian families with children encircling him, jumping and cheering. This geeky and totally charming American is the most popular attraction at the market.
I kindly say “No thank you” to several different food vendors for what feels like at least four hundred times. The authentic food from various regions in India smells . . . interesting, or spicy, or something that I can’t really identify. A sweet older lady urges me to try the momos from the hilly state of Sikkim, India. Momos are a South Asian dumpling, often filled with onion, garlic, and coriander. I’m tempted, but I’ve been warned against eating the street food here, even though I probably have enough antibiotics in my system from treating Lyme to kill any foreign invader—well, except the Lyme, which seems to survive everything and anything.
