April 18, 2021 6:10:59 am
A post-concussion brain is uncharted mayhem, like what one sees in amateur horror films. Things go badly, nothing is scripted and, worse, there is no order to events, no prescription that can replace chaos with structure and turn bad outcomes into good ones. An otherwise able body is condemned to a life of cognitive isolation and bewilderment.
Sudden falls from orthostatic hypotension in 2018 and 2019 led to paroxysms, the effects of which I feel to this day. Syncopes that rendered me useless, as I had known myself and others had grown to know me. Each fall left my brain injured further, each injury furthering debilitation. I lost more and more of my everyday functioning, until I was left unable to fend and care for myself.
Having a large and loving family, close and caring friends, generous and doting fans and loyal well-wishers made me one of the luckier people afflicted with brain pain and suffering. Even with such an abundance of love and nurturing, I found myself on the receiving end of much pity and disdain. My mind was feeble, and I was unable to express myself, but my brain was still hearing and collecting the words, actions, reactions and behaviours of others. The irritability and discomfort of having to deal with my less-than-perfect self turned many who loved me, into people uncomfortable around me. They were lost to the vocabulary that could connect us and keep me relevant in their lives, or humanise me and make me even a distant version of the man they had once feted and placed on a pedestal.
Thankfully, many family and friends in the US, the UK, Italy, Singapore, Mumbai, Noida and Delhi went beyond what was easy and carved out time to fit me into their lives, making room for the new me that came with vexing challenges and tedious baggage. They adapted to my needs and necessities, thereby becoming bigger and richer versions of themselves, growing personally as they set about creating a safe space for me to feel comfortable, and brave my own struggle of adapting to new realities and dealing with disabilities. These people were my angels, going out of their way to be empathetic and caring, generous and magnanimous, in a world where fiscal success and instant gratification are the measures of fulfillment.
But it was my mother who nourished me back to health, who brought me back slowly and surely to life, a new life, with countless interminable stops in places darker than hell and scarier than the most terrifying of horror movies. Surviving that roller-coaster ride and living to tell the story of my emotional state in those times serves to reinforce my awareness of our human collective. We are all but one accident or misfired neuron away from becoming those people we feel pity for and hardly find time to even notice.
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Gratitude towards my mother takes me on a flashback to when she took on the role of nurse and caregiver to my father’s mother, her mother-in-law, my dadi. Those were long, arduously hard years, filled with unending tasks that she could have easily relegated to hired staff. But my mother felt obligated to care for dadi’s most private needs herself, to maintain a certain sense of dignity for the brassy and commandeering matriarch of our family.
In doing so, mom not only gave my grandmother the respect and stature she had always commanded and enjoyed, but also, through her example, ensured that my siblings and I, and all in our household, would never forget the place that dadi had in our lives. In declining health, her mind lost to the dark, uncharted depths of the haze of Alzheimer’s, dadi wasn’t able to communicate any gratitude for the care given to her, but mom never wavered from doing what she felt was right.
Many years later, mom cared for me as selflessly as she had for my dadi. Tears fill my eyes when I think of how this incredible woman, who spent the better part of her youth and middle-age caring for children and elders, somehow found miraculously impossible reserves of will, strength, stamina, dedication, patience and focus to care for a helpless, hopeless grown-up son.
Nearly 44 million people around the world suffer from Alzheimer’s. Millions more are afflicted by other diseases related to the brain. Yet, these problems are mostly kept hidden. They have had very little invested in them for research, cure and understanding. We are happier thinking of those who are mentally challenged as less than deserving of their fair share of medical care and breakthroughs or of societal care and infrastructure. There is always something else more pressing, someone else more deserving. Even the words used to speak of issues pertaining to our mental well-being are harsher than those used for other maladies. Shame and disgrace abandon sufferers to ignominy and long, lonely passages of time — time where a tired and bruised brain breaks both the spirit and the body.
The brain is the most prized part of the central nervous system. Yet, when it needs our maximum and most mindful care and attention, we find it easier to ignore, avoid and be mindless in our reactions. Having been on the receiving end of obdurate pity and callously misguided sympathy, I write and speak out in hope that we will bring out the mother that resides inside all of us, who is capable of finding will and stamina, determination and drive, to ensure that none in our collective have to ever be neglected, ignored or left out because we wrongfully believe that they cannot feel, think, see, hear or react.
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