THE PERSONAL PANDEMIC
I lost my mother to the pandemic. Not in flesh, not in blood… but in spirit. Three years ago, my mother was diagnosed with dementia, which later turned out to be Alzheimer’s. It’s a diagnosis that withers a family, dismantles its hopes of happiness to smithereens. I knew what awaited my mother — a psychological limbo. When the doctors said that medicines would delay her cognitive decline, my sole objective in life was to make her present — the only shred of certainty she was clinging on to — as happy and bearable as possible.
Keeping that in mind, in February 2020, I hosted an elaborate bash for my parents’ 45th marriage anniversary. “Do you think we will not live to see the 50th?” my mother joked. I wasn’t so sure. I still remember that day when she couldn’t recognise many who’d come to join the celebrations, but she was happy and jubilant. And that’s all that mattered because happiness was the only prescription to making Alzheimer’s bearable to us as a family. In my mind, I’d decided to fly down to Delhi every two months to spend time with my mother before her mind completely descended into void.
Two months later, my mother was condemned to house arrest. She wasn’t alone, Covid-19 did it to the elderly the world over. As India imposed strictest possible lockdown to contain the spread of the virus, my mother would have to find her world at home. This, at a moment when the doctors had advised us to let her socialise more. Alzheimer’s wasn’t the only demon mum was fighting; it was also years of untreated depression. She needed to be out and about to discover and distract herself. If there was any hope of that, the lockdown proved to be the final nail in the coffin. My family began to witness a sharp decline in her attention spans that had already shortened over the years. She found herself lost in her own home. Staying in an indefinite period of confinement, she even forgot her partner of 45 years — my father. She suffered hallucinations, mourned the death of a husband who was very much alive. My brother became her only connect with the present.
Staying in Dubai and caught up in the rigours of a job, I was oblivious to the final descent that had already begun. My father’s standing instructions to the family at large were not to tell me about the exact nature of the deterioration. This, he thought, was his way of protecting me, even if it meant casually saying that she had been stable.
The dark truth revealed itself to me on the day of Diwali. As I called to wish my family, my brother seemed reluctant to talk to me. He would insist I speak to my father or mum. It wasn’t until I pressed him for the reasons that he told me about the rapidly worsening nature of my mother’s Alzheimer’s. Within a week, I took a flight and went to meet my mother. She wasn’t around when I finally reached my residence. I waited anxiously about what I was about to see. As the doorbell rang, I opened the door and was relieved to see my uncle and mother. “Thank god,” I told myself, “She looks alright.” She entered the room and sat next to me. I thought we would be sharing a mother-daughter moment. She touched my hand and asked, “What’s your name, beta?”
Today, my memories of mum are neatly compartmentalised into the time before and after this moment. In the time before, she had been a woman who had expectations from her retired life. She had been wanting to visit England, a prospect I kept planning for every year fruitlessly. Having a sweet tooth, she learnt baking. She wanted to run after grandchildren who were yet to be born. Somewhere in the middle of this daydreaming, a nightmare was unfolding.
As someone who was not living this nightmare day in and day out, I felt obliged to put out a strong front. It didn’t mean that I would resort to assuring my family that mum would be alright. Rather, it meant working towards creating a system that would make my mother’s life easier. Making notes for her to remember things. Putting small chits with her name and address in her purse lest she head out and forget where she lives. The world loves the idea of a strong woman till adversity hits and challenges our resilience. My strength came from looking at the silver linings. My mother was still alive during a pandemic that had already claimed several lives. If there was one prayer that I kept repeating to my god on loop, it was for Covid to stay away from my family.
What we fear most also has a way of turning into reality. Covid did enter my household in April this year. This was a time when Delhi was exasperated with shortage of oxygenated beds and proper medical care. Alzheimer’s and Covid turned out to be a heady concoction. Not knowing she is infected, my mother would reach out to the nurse who’d been appointed for her. Fearing that she would be infected, the nurse left soon after. If the oxygen levels were dipping at an alarming rate and she had to be hospitalised, who would take her? The rest of the family was already weak and bedridden. There were many good samaritans who would volunteer, but could a woman who experiences hallucinations remain in company of strangers in PPE? There was no light at the end of this tunnel.
Mum eventually recovered. It took a lot of help from friends and foes — whether it was about having food delivered at our home or getting medicines and concentrators. But it came at a cost. She went deeper into her hallucinations.
I have lived through much of this period as a spectator living in another country. What hit hard was the knowledge of my mother’s mortality. In the time of crisis, we seek faith because scientific facts don’t always appeal to the heart. Moreover, the human mind does not accept that life comes to an end. We create ideas such as afterlife in order to convince ourselves that something of our loved ones will be retained.
I had gone through all stages of grief when Covid hit my family and transported me back to denial. It was another stark reminder of my mother’s limited time on the planet. I needed closure that would not come so easily? What does closure even mean in the time of the pandemic? This is an alienating virus. It demands that we live in our own silos and interact with people virtually. This is a consolation we give ourselves every time we experience loss — whether in flesh and blood or in mind. We are collectively in a limbo. For people like me, however, the limbo has an additional baggage — that of survivor’s guilt. I often wonder what am I really guilty of. The knowledge that I have escaped the nightmare that my brother and father live through every day of their lives. The knowledge that I might just be experiencing moments of happiness at a time when mum might be hallucinating. I survive while my family simply exists. This is what my conscience tells me every day.
Survivor's guilt is the mind’s way of acquainting you with your privilege, while also undoing your self at the same time. I often think about how I have survived with the survivor’s guilt. By looking the other way. This has meant burying my head into work. Sometimes, inventing work for myself so there’s no room to think. If this means fewer phone calls home, so be it. Survivor’s guilt hits the hardest when you have empty moments in life. I fear such moments because inadvertently the image of my mother comes to mind. The knowledge that I might just be abandoning her in her time of need. Sure, I can blame the Covid-related travel risks for my infrequent visits to Delhi now. But in my heart, I know that this is not the case. Is survivor’s guilt also the mind’s way of being hard on yourself? Even if so, it is penance. Waking up every morning to numb yourself to a sense of loss, that has been my way of coping with mum’s rapid cognitive decline.
In the context of Covid-19, we tend to associate survivor’s guilt with those who have experienced loss in more tangible terms — death. But there are many of us who continue to be in this constant state of loss. Think about it, when was the last time we experienced devastation at this scale? While the world has changed, the terms on which it operates have not. Money still buys us good life, which sometimes means as little as affording best treatment should things go wrong. For those who are employed, work from home has often, if not always, meant longer working hours. Given how the pandemic has impacted various sectors, we are also living with a constant sense of dispensability. If in pre-pandemic times, we could simply pack our bags and go anywhere in the world to ‘recharge ourselves’, it’s not so simple doing so at a time when many countries have imposed travel restrictions.
When it started, we romanticised lockdowns as the much-needed ‘pause’ we needed from the hustle bustle of our lives. But in this new normal, where individuals are so easily replaceable at work and at home, we have been denied a basic coping strategy — distraction. What can possibly distract you when Covid dominates living room and water cooler conversations? Somebody or the other has been experiencing loss, reminding me of the impending doom that's lurking in my own backyard. Every day has been about picking up the pieces and starting afresh. As the virus mutates and rears its ugly head, we are experiencing burnouts, anxiety, a sense of languishing. There is almost a sense of urgency in naming the feelings we have not felt before because it gives us a faux sense of being in control. The truth is, we aren’t.
I have often tried to dissect the origins of this grief and guilt I have been experiencing. To understand how the virus has not only changed lives, but also transformed people, The New York Times sent its reporters to Bergamo province in northern Italy, which was worst-hit by the pandemic. It is here that hospitals became makeshift morgues, scenes of absolute helplessness offered initial signs to the Western world about the absolute horrors the virus could wreak. Interestingly, in a detailed report, NYT found that people who had lost their loved ones to Covid-19 had diametrically opposite reactions to the crisis. Some wanted to be left alone, the virus had pushed them to it. Some sought company fearing the loneliness the virus had subjected them to. There was anger against the government for letting the situation go out of hand. There was anger against gods too. Every emotion was underlined not simply by loss, but a survivor’s guilt and that had changed the very fabric of people’s lives. It had even turned them to substance, alcohol and cigarettes.
While it is a mental condition, survivor’s guilt manifests itself through depression and anxiety, both of which have been rising post-pandemic. A study conducted by Columbia’s School of Public Health observed that the number of mental health cases that had been reported had increased by 21 and 24 per cent respectively. In Asia, it has been a staggering 18 per cent. According to the World Health Organisation, one in 13 globally suffers from clinical anxiety, while close to 264 million people of all ages suffer from depression. Enduring loss for those who already suffer from these mental health conditions has been particularly difficult.
They say the wound is the place from which light enters you. That light entered into my life in the form of writing and therapy. Going through my own stages of grief, I began to write about my mother’s condition only to see it resonate widely. I vividly remember the first time I wrote about my mother’s battle with Alzheimer’s. There was a fear that writing about her would invite stigma. Moreover, it was also opening of personal wounds to a public that I would never see or meet. But writing also articulated the journey the mind was going through.
This sweet spot between acceptance and reconstruction was discovered by me, thanks to a therapist who chose to show me the larger picture. With her, I embarked on a journey to understand my own mind and realised that while grief is personal, it is also universal. I also confronted that thought that I’d buried in the subconscious — I was never having it as easy as I thought. It also took immense courage to get up day after day, and carrying on. You see, sometimes, survival itself takes courage. Once I reached this point of realisation, it was easy to rationalise a few things. What I have learnt in this journey is that the greatest gift we can give ourselves is healing — beginning a constructive dialogue with our own minds, talking back to the voice that deems us guilty of survival. Our salvation lies in this conversation with ourselves.
