1 Childhood
Every Fighter Needs Someone In Their Corner
I WOKE UP in the middle of night shouting for my mother, “I want Amma.” Even at thirty, when I was in pain, the heart called for mother. Suresh, my husband, consoled me and helped me through the pain.
My mother is just 4’10”. But in my eyes, she towered tall as someone who looked after and protected me, but also as someone who did not shy away from disciplining me.
SOMEONE WAS ALWAYS IN MY CORNER
Fighting for your life is like combat. In combat sports, such as boxing and wrestling, a corner man is a person whose job is to assist the combatant between rounds. I was lucky to have two in my corner: my mother and my husband.
For every single occurrence of cancer and during all my treatments, my mother was always beside me along with my husband. She braved traveling alone with the minimal English that she knew, all the way from India, with a stopover at a busy airport on the way. During chemo, the only food that was soothing for me was food cooked by my mother.
Between my parents, she was the bad cop and dad usually played the good cop. Despite playing the bad cop it was very evident that she loved her children tremendously and always took extra care to feed us well and to protect us.
My mother was quite unaware of worldly affairs. Yet, her love for her child drove her to agree to be my donor, the day she learned of my kidney failure. The same mother who I was afraid of, who I thought was ignorant was ready to do anything to save her child.
After marriage, my husband Suresh, the love of my life, was there with me every step of the way, through thick and thin, never missing a doctor’s appointment. In our twenty-two years of married life, we have had lots of memorable, gratifying, fun moments and he has made my living worthwhile despite the health hurdles. The most memorable moment in my life was when he shaved his head on my birthday, to match my bald head. Anything for his birthday girl.
CHILDHOOD
The year was 1980 and the place was Tiruchirappalli, the town where I grew up in India.
We were playing a trust game, wherein a bunch of teenagers catch young kids when they jump. A very simple act. It was an easy game for the younger kids as they trusted and adored the teenagers.
My sister yelled, “On the count of three, jump!”
“Yes,” I squealed happily.
On the count of three, I jumped, flying high, directly toward my sister’s arms, hoping she would catch me. My sister tried to catch me but unfortunately, I was way off the mark and hit the front gate with my head. Rumor has it that I cried—well, who wouldn’t?
I was always the tomboy of the family and very mischievous. Often, when I was home, I was busy climbing the doors and windows around our house.
I never shrugged off doing anything adventurous. My five-year-old self was very sure that I could fly and the trust in my sister boosted my confidence. When I hit the gate, my sister rushed home to tell our mother. They hurried me to a clinic nearby. The doctor treated me with a few stitches to the forehead, the mark of which still resides on my forehead today. Per my sister, I was a brave little girl even then.
On the count of three, I tried to fly that day. But in my mind, I was always this little person who could fly, who could face any demon—well, any demon except cats. Cats, I was and am still afraid of. It is interesting to note the twists and turns that life takes. Does it treat you well or does life take you for granted? Does it provide you with ups and downs or does life let you be? Life surely shows most people how to deal with cats, but disease demands more from us.
SISTERLY LOVE
I was rebellious but generally honest; I did not mind a white lie every now and then to get away with skipping pills, to steal my sister’s water colors, or to feign sickness to skip school. I was ready to do anything to follow in my sister’s footsteps. Sometimes, taking it too literally and following her like a puppy. Hema, my second sister, was everything I was not. Seven years older than me, she was fair and beautiful, witty, and liked by all. I was dark, lanky, always walking around with a scowl on my face. She was what I wanted to grow up to be. She was my protector, warding off all evils but also my tormentor, the master who made me run her errands—some as simple as fetching water. One can always afford to be lazy with a starry-eyed little sister around to do your chores. She was pretty much the definition of a big sister, assiduously working for my progress while tormenting me with little stuff.
My eldest sister Uma, eleven years older, was out of our house by the time I was five years old and has always been more like a visitor in my memory. More of a maternal figure than a sister. The kind of sister who loved you like a mother. The one who you are forced to listen to, whether you agree or not. The sister who is touted as a role model and the one you strive to emulate. The sister whose visits you look forward to and expect gifts.
VITILIGO
A few months after my fall, I was diagnosed with vitiligo. It is a disorder where you get white patches on your skin due to melanin deficiency. Nothing life-threatening but not a good sight to see. Especially for a dark-skinned girl growing up in the 80s in India. Many Indians in those days, and some even today, considered white or at least light brown skin as the favored color for a person to look beautiful. As racist as that thinking seems, it was true then and, for some people, the belief remains deeply embedded today.
Imagine the plight of parents who have a darkskinned daughter with white patches. They were worried about my future and immediately decided to find a good doctor who could cure me of the disorder.
My ever-loving father took me to various doctors after consulting his friends; he would not rest until he found a solution. We visited various doctors practicing different types of medicines, including allopathy, medicine as we know it, what we use in our day-to-day life; alternative medicines like homeopathy, treatment of disease by using tiny doses of liquidated natural substances; and Ayurveda, and Siddha, which is practiced mostly in South India, consisting of a mixture of herbs and sometimes metals.
One evening, when I was in the first grade, my dad came to the school to pick me up and shuttle me to a doctor in Tanjore, a town an hour away from Tiruchirappalli, the city where we lived. Since I hated these doctor visits with a passion, I intentionally hid from my father to avoid going with him to the doctor. Instead, I went home in the school rickshaw. Rickshaws were very common in India in those days. It is a vehicle pulled or pedaled by humans with seats for passengers. Schools were filled with rickshaws and groups of students were shuttled from home to school and back by rickshaw-wallah, the person pedaling the rickshaw.
Sure enough, after I reached home, my anxious father showed up to take me to the doctor. I was very confident that I had dodged that visit by hiding from dad at school. Alas, life doesn’t always grant your wishes so easily. It takes its own time. I learned my first lesson that day. Running or hiding from struggles and dislikes does not make them go away. They always come back to find you, just like my father found me. His intentions were noble, out of pure love for me, and the trip to the doctor essential. Who knows what one might learn when facing struggles instead of running away from them? I suppose I was not destined to wait too long to learn how to face struggles.
We did finally end up visiting that doctor and he treated me for a few months with some pills and tablets. As a child, I could go one full day without food, but no one could ever make me swallow a pill. My throat could distinguish between a pill versus a grape and refused to gulp it down. I had a clear-cut plan to help my throat: take the pill from mom with a smile, pause slowly, go out, throw the pill out the window, and gulp the water down. This went on until the day my sister found the pills under the windowsill. The throwing was promptly reported to mom, and I was let go with some spanking and strict warnings. I did not realize then that this punishment came from their concern and best intentions for me. I hated gulping the pills with every cell in my body.
Even more disheartening was the complementary treatment: I was asked to stand naked facing the sun, with only my underwear on, every morning for ten minutes. For a self-conscious six-year-old, it was not easy, especially since we did not have a backyard and lived in a colony of houses. So, I had to stand outside the house. The plan was UV therapy for vitiligo. All I remember is the shame and self-consciousness of how others would perceive this. The day always started with this act. Retrospectively, it doesn’t seem to be that awful for a six-year-old to stand naked, especially when the whole world is busy inside their houses getting ready for the day. But, at the time, it was one more difficult pill to swallow.
That remedy did not work and luckily for me, dad found a Siddha specialist (a doctor providing alternate herbal remedies) near home who was known for curing various disorders. No more standing in the sun. I was not worried about not getting cured of vitiligo but instead rejoiced that there were no more long trips or standing in the sun.
PRIMARY SCHOOL
“Shoba, what is the white patch on your...