My scar(r)y tale!

I am a 43-year old software engineer turned journalist, writer and trainer on human rights, who considered herself as a woman until 2 years ago. Then, I began identifying as gender-fluid and that has liberated me, largely. I keep highlighting through my writing and speaking that we need not blame or shame ourselves for anyone having stereotyped or misinformed opinions of us. Yet, I took around 35 years to overcome the hesitation of exposing a long, thick post-operative scar running vertically down my chest and a small one on each of my arms.

Born with a life-threatening “hole in my heart” (termed a ventricular septal defect, medically), I underwent an open heart surgery, to close it, at age 4. That was tough even in metropolitan India of the late 1970’s with only a few hospitals performing heart surgeries, nationwide. My rare blood group complicated my condition, additionally. While reassuring me that I was normal, my parents (who had seen me, their first-born, survive a battle for life one night when aged 3 months) requested my school teachers for some exceptions and precautions on my behalf, based on my doctor’s advice. I vividly recall the trauma of being labeled a “sickly child” needing special attention before my third grade class although I performed quite well, academically. Further, faring poorly in physical sports, which was apparently accentuated because of my flat feet, disappointed me. However, I was delighted when I slowly learned bicycle riding and enjoyed doing it alone or with my only sister and friends, into my adolescence. Also, I acquired a bachelor’s degree in computer science and engineering from one of India’s reputed universities and also worked abroad while surviving extreme weather conditions. And, I appreciate that my family, teachers and later my friends were extra cautious for my benefit.

These realities have strained me and my loved ones emotionally, financially and physically, forever. Despite living in hot and humid places, I often covered my scars owing to shock, curiosity and occasional shaming from loved ones, acquaintances and strangers. Fortunately, some expressed concern and sympathy, orally and otherwise. I was often surprised and uncomfortable with questions, comments and stares and hurt when dear ones covered them or advised me to conceal them or wondered how my partner accepted me despite my scars and medical history.

Of course, the above reactions persist probably because of ignorance or stereotypical notions of beauty, but I am handling them better than earlier. I empathize with people who react neutrally or negatively and I am grateful and touched by positive or curious responses about my scars and unstable health. Further, it has enabled me to reach out positively to a few family members, friends and colleagues having heart or other surgeries themselves or in their household. And, knowing the importance of fresh blood for surgeries, a few of my friends and I quickly publicize requests for blood donation, through social media. Having noticed the success of these efforts, I am glad when people contact me for assistance. This has helped me overcome my disappointment at being unable to give blood owing to mild anemia and hypotension (low blood pressure). Also, a loving and progressive family and supportive friends particularly from the transgender community, have helped me much in coping although my low immunity worries them sometimes. I have realized my privileges and use them to expose and question systemic wrongs and portray the realities of socio-economically disadvantaged persons through my writing and speaking.

Presuming that sharing my personal story is insignificant, I rarely disclosed it until a group of courageous rural Dalit women activists (often considered ‘outcastes’ in the caste hierarchy in India irrespective of laws prohibiting and punishing caste discrimination) urged me to talk about myself when I was leading a discussion on the evolution of gender specific laws and policies in India. Further, a maxim of the feminist movement that the “personal is political”, Maya Angelou saying that we should discuss our lives publicly, Audre Lorde’s views on the importance of self-care and websites like World Pulse, have encouraged me to share my story. Also, I gradually realized that we can perhaps accept and understand others better if we begin with ourselves though that process may be endless. Humor and self-respect could help us choose whom and what to value or ignore!

Here is a verse I penned on this subject last year:

An Unhol(e)y heart?

A scar of 24 stitches

that sometimes itches,

Though I often scratched

it rarely 'showed',

But when I revealed:

it resembled a defect or disease

That made my body

seem abnormal, ugly

To all but me

and those who love me :)