Spotlight: Women in the Shadows

My Learnings from the Women I meet in Palliative Care

-By Dr. Swetha Subramanian, Romila Palliative Care

Let me start by sharing my personal philosophy.

To me, learning is paramount and while I might read, believe, and practise to enhance my spiritual and intellectual well-being, I understand that my ‘teachers’ can come from any background.

The medical field does not quite offer an insight into the lives of people while being treated at clinics and hospitals. I have the privilege of working in palliative care, where I literally ‘walk-in’ to the homes and lives of people with life-limiting illnesses.

Being a little fancy, I would like to correlate my learnings from the field with the Japanese philosophies of Wabi-sabi, Zen, Mono no Aware, Bushido, Gaman, and Uketamo.

I bring here narratives of some women I’ve met, who definitely do not know these philosophies, yet are an unusual source of inspiration. I chose the word ‘unusual’ because we might appreciate them for what they do but not possibly learn from their daily challenges—they might not be the ‘superwomen’ we keep looking for!

Uketamo (Acceptance with grace):

Eighteen-year-old Alfiya quit studies and turned full time caregiver for her father who suffers from advanced cancer. The meticulous manner in which she cares for her bedridden father with multiple physical issues can put any trained healthcare professional to shame.

Ironically, Alfiya’s father wanted her to become a doctor, against rules of their community, a dream that was shattered with his incurable illness.

Alfiya will soon get married and be a housewife.

When questioned if she would like to work in the healthcare sector, she simply says, “I wanted to but no longer feel so.” Her mom adds, “We do not know the outside world. We only care for our family indoors.”

Thirty nine-year-old Kavita, when diagnosed with cancer of the face, had only one question—“Madam, will my 6-year-old daughter get cancer if she touches me?”

Fear was evident in her eyes and speech, as she gradually succumbed to the disease—giving up on the attention she received from her husband and other family members, including her daughter who started getting scared of her.

Despite her internal battle, she was OK being left alone in a room (without a telephone), away from family and others, where food and medicines would be kept for her at scheduled times of the day.

Wabi-sabi (embracing imperfection); Zen (Living in the moment):

Shaheena and Salman are no less than Heer-Ranjha or Romeo-Juliet. Salman was born deaf and mute, has end-stage kidney disease and a progressively weakening heart, which can be considered a handicap to many. To Shaheena, none of these matter. Of course, she is worried and understands that his days might be numbered—that does not stop them from having their cute arguments or planning the future for their daughter.

Salman complains in his sign language (which I have picked up a little), “Shaheena does not bring me breakfast on time while I’m at dialysis. Somehow dialysis makes me feel very hungry!” In her defence, Shaheena makes a grumpy face and says, “I need to wait for your friend to open the shop for dosa. Do you want me to run all the way back home to cook for you? I think you should carry biscuits!”

Mono no Aware (Awareness of impermanence of things); Gaman (Perseverance and Patience in the face of adversity):

Samiksha, who married against her family’s wishes as a teenager, stood rock solid by her mother’s side during her last days. She went through extreme lengths to fulfil her mom’s wishes—being the caring daughter, the funny companion, and even accomplishing the almost-impossible task of bringing her estranged brother to meet their mom. Her husband was her pillar of strength, while her children couldn’t quite comprehend why their mother would do so much for someone who never cared for her.

“I craved for this attention from mom all my life, and now that I have it, even if for a brief time—I want it, I want to cherish it all,” says Samiksha.

Bushido (The way of the warrior; Honour, Loyalty, and Integrity):

And then we have Mamta, whose husband used to physically abuse her after drinking. Yet, in the vulnerable stages of his life, she ensured he was cared for with respect. She never uttered a word of hatred or disrespect.

Mamta says, “Alcohol is a demon, it makes a person do things he might otherwise not. Leave it, I cannot see him struggle when I know he doesn’t have long to live.”

I cannot disregard the quiet compassion and acceptance of their lives these women have, irrespective of their age.

For you and me, freedom might be the choice to pursue what, when, and how we wish. When we manage to balance our work and personal life, we might be called ‘super women’—a title we might not consider for those who spend the bulk of their days indoors. The word ‘housewife’ was changed to ‘homemakers,’ citing the need for dignity. But do we really need the Supreme Court’s order to acknowledge the women behind the scenes?

Amidst the various families I visit each day, there’s always a quiet voice with a shy smile that says, “I didn’t even think that I am contributing to something. This is what I know and do, whether or not anyone appreciates.” This speaks volumes in a world that looks for appreciation even in the smallest things.

We had Rani Laxmibai, Raziya Sultana, Ahilyabai Holkar, and others who fought for rights in their times--Today we have the unknown Alfiya, Kavita, Shaheena, Samiksha, Mamta, and others who are making a difference to their loved ones in their own little ways. For them, medals, certificates of recognition, or praises would not hold the value a simple, “Thank You for All You Do,” would do.

From them, I also learnt that ‘women empowerment’ need not be generalized. In our quest to try and DO something for someone less privileged (in our own perception), we must understand not everyone is dissatisfied with their life, no matter how unfair it might look to us.

My learnings do not end here, and neither am I saying that men do not show similar qualities (let’s leave that for the next story!). But for now, these women in the shadows have taught me:

Yugen—to look beyond the surface and appreciate life’s deeper, subtle beauty;

Omotenashi—to consider the needs of others and act with kindness and generosity; and

Oubaitori—non-comparison/embrace and accept each one’s unique journey.

Of course, I cannot end without an ‘Arigatou Gozaimasu’ (Thank you very much) to the woman—Dr. Fernandez—who brought so many of us together with a vision that binds us all at SNEHA.