by Amy B. Scher
I am on a 21-hour flight, I am disabled, uncomfortable, and in pain. I hate crowds, I get anxious when I cannot escape from a small space, and I am not fond of germs. I am on this flight to New Delhi, India to save my 28-year-old life. I will be there for two months while I receive an embryonic stem cell transplant, treatment that is not available in the U.S. This journey is my leap of faith, my last resort.
In 2007 I was diagnosed with Lyme disease. I am in pain 24-hours a day with relief only in a drug-induced sound sleep. Fierce, full-fledged body pain engulfs my being. Not one inch of me is saved; everything from my feet to the top of my head screams in agony. Because the disease was misdiagnosed and untreated for so long, the damage to my body is ravenous. Lyme disease, transmitted by a bite from a tick, is a bacterial infection caused by an organism known as Borrelia burgdorferi.
The Center for Disease Control’s clinical criteria for Lyme disease is quite narrowly defined and has caused a huge controversy in the medical community. The CDC estimates 300,000 cases of Lyme are contracted in the United States annually and a mere 10 percent are properly diagnosed, leaving many with misdiagnoses such as fibromyalgia, Lupus, chronic fatigue syndrome, Multiple Sclerosis, arthritis, migraines, learning disabilities, bi-polar disorders, Parkinson’s, heart arrhythmias and more. According to the Centers for Disease Control & Prevention, in 2009 Lyme disease surpassed the number of HIV cases.
I am standing in line for the bathroom barely able to balance myself. I am being nudged and pushed and hugged by warm bodies all around me. I keep turning my head to see why everyone is pressing into me, yet I cannot seem to find a legitimate reason. This is my first introduction to Indian culture, where personal space is not a necessity. I did not see this warning in the travel books.
I soon realize I am not just part of the line – I am a spectacle. I am white with blond hair and everyone is staring me down, with no shame. One of the flight attendants asks me why I am headed to Delhi, and I explain I am on my way to receive a controversial treatment in hopes of reversing a degenerative illness. “Western medicine has failed me,” I explain, “and I’m just trying to save my life.” She asks questions with great interest while the crowd that has formed in the aisle snuggles in closer, eyes widening with every move my mouth makes.
When it is finally my turn for the bathroom, I am shoved into the stall before the last person can exit completely. No one bats an eye and the person coming out is not the least bit bothered. When my turn is over, the next person is then forced upon me while I struggle past them in the narrow door opening. I finally make it back to my seat, relieved that all of the cubic inches around me are mine.
I arrive in India and soon realize the plane ride was a sample of what is to come. In this crowded city no one spreads out, even when there is space to be had. In stores everyone is trying to grab the same product at the same time from the same shelf. There is more of a “gathering” at the check stand than a line. My orderly conduct is the anomaly. Here, I am even more of a spectacle than I was on the plane. In a non-touristy area of Delhi a white girl is quite the rarity.
My thoughts turn to my home in the U.S. I miss blending in, feeling like I have anonymity, and simply living a normal life like my friends. But alas, I cannot be home because that is not where this life-saving treatment is. I have tried both conventional and alternative routes, neither leading me back to any resemblance of the life I once knew. I am confident all the heavy duty oral and IV antibiotics, hyperbaric oxygen therapy, herbal remedies, IV detoxification treatments, and more have helped eliminate a fair share of the bacteria. But it has left me with a body full of degenerated nerves, muscles, and organs with no real chance for normal function or repair. Stem cells are my biggest hope, but embryonic stem cell therapy – the most promising for my condition – is not available in the United States.
I have researched many types of stem cell therapies, including the popular cord blood cell therapy. But I hit a roadblock when I discover that that I have to have an “approved” condition to use them. It seems the U.S. government, which will not let me use the cells or allow me to fly them out of the country for a transplant, still owns my body more than I do.
As I settle into my life in India I become accustomed to, but not yet accept, being in small spaces with many people. Because I am doing more living here than visiting, I find myself participating in things the locals do: going to the market, getting my laundry washed by the man on the side of a dirt road, and buying sweet potatoes from a street vendor. This all becomes normalcy, and I soon hardly notice the stares that always accompany me wherever I go.
But then I decide to visit the Delhi Zoo. It is toward the end of my trip and my health has improved so much I can now go out to more “risky” terrain. I am a big fan of animal watching and this seems like it would be a healthy diversion from my “sick” life in the hospital. I am allowed to go on outings as long as I am back for physical therapy and stem cell injections.
The zoo proves to be more entertaining than expected when I realize that I am indeed, the entertainment. A group of schoolboys follow me around the elephant exhibit and finally work up the nerve to ask me if I am Shakira, the Colombian pop singer. While my thick curly blonde hair has a vague resemblance, I am flattered but answer in honesty. They seem disappointed but continue trailing me anyway. I am stopped every few minutes for a photo opportunity, which only gathers more attention and crowds. Who knew I was a walking Kodak moment? Pretty soon, the circle around me is fuller than that around the rhino exhibit, my favorite at the zoo.
With time I learn to accept this staring as a compliment, and smile instead of scolding my eyes when I realize what is happening. Instead of seeing the close quarters everywhere as claustrophobic, I shift my perspective and see this as “community.” Tuk tuk drivers chat to each other as they are stopped in traffic, almost touching despite being in their own vehicles. The nurses in the hospital shuffle around, always in pairs. No one outside is going anywhere alone. People are crammed into cars, eateries and sitting on each other’s laps on bicycles.
I realize that, in part, I made myself the anomaly those first weeks—resisting a cultural style that was not comfortable for me. I decide I am going to adopt rather than oppose the system. I start to push my way down the streets instead of walk. When I am waiting for a table at my favorite restaurant, I smash in with the rest of the people who are fighting their way to the front podium. The more I mesh into the crowds, the more I relax into the flow of the city. Things get easier. I feel less foreign.
When I leave India at the end of my two months, I am still as white as when I arrived. I am still stopped for being a Shakira-a-like. I still almost get knocked over every time I go out. But, I am changed. I feel like part of a city where everyone seems to be rushing around but still is always interested enough to gawk. I wonder how much our lives would be changed if we stopped judging in defensiveness, but started staring with curiosity.
• Trailer for Amy’s recently released book, This is How I Save My Life. •
Amy B. Scher is the author of This is How I Save My Life – A True Story of Embryonic Stem Cells, Indian Adventures, and Ultimate Self-Healing. With a history of chronic illness, Amy set out to discover the foundation of healing. She is an expert in mind-body-spirit healing with offices in Los Angeles and Monterey, California. She uses energy therapy techniques to help those with chronic illness and those in need of emotional healing to identify, release and move on. Amy is an Ordained Minister of Holistic Healing. She is a frequent contributor to healthcare blogs and has presented to groups including the Department of Psychiatry and Behavioral Sciences at Stanford University. Amy lives by the self-created motto: “When life kicks your ass, kick back.”