A heart-stirring account by Kunal Mahajan as he watches his mother-in-law, Rohini Waikar, 52, affected by Multiple Sclerosis, gradually lose her ability to walk, talk, read, remember and a bit of her life every day.
Every morning, she loses her life, one ounce at a time. She has already lost her ability to walk, talk and read. In the next two years, she will lose her ability to eat, taste, and see. Eventually, time will peel away every layer of life, reducing her living to a mere existence.
Meet my mother-in-law. Rohini Waikar, age 52, diagnosed with MS more than a decade ago. Since then, the small family of three - father, mother, and daughter - began an intense journey of highs and lows. Their story is full of struggle, tears, disappointment, anguish, yearning, and depression. It is a story of rise and fall, fight and surrender, grit and grace, acceptance and peace.
It is a story of one brave soul facing mortality an inch at a time.
A photo from family archives - The Shimla Trip
The 10-step journey
Like clockwork, her husband wakes up at 5:30 in the morning. The next two hours, the Waikar household prepares for a ritual, perfected over a decade of constant tweaking and adapting. At the end, he will transform Rohini from a messy glob to a neatly combed, cleanly dressed woman.
The ritual starts with Rohini wobbling in bed, trying to sit up. Most days she succeeds to wield body to her will; other days she lays waiting for her husband. Once he enters the bedroom, he takes control of the situation. He assesses Rohini’s condition, dismisses her attention seeking complaints and pulls her towards the edge of the bed. He holds her shoulders, plants himself in front, steps on her toes and uses his body as a counterweight to pull her upright.
The minute Rohini is up on her feet, she starts shaking vigorously. He holds her firmly and commands sternly to focus on breathing. His technique proves to be highly effective. Rohini gains control and the shaking stops momentarily. Then, both of them commence on a grand journey of 10 steps towards the toilet.
Mortality is not graceful
Her walk is awkward and strange. When she moves, her limbs execute an inconsistent and incoherent agenda of their own, collectively revolting against her primary objective of moving forward. Her husband drags her to the toilet and helps her through each and every step involved before, after and during the morning ordeal.
The rare occasion when she is alone at home, the gross brutality of her condition can be seen. She has already lost the freedom of attending to nature’s call on her own. Sometimes, the 10-step journey leaves her with visible bruises on the body. Sometimes, lapses in her bowel control mark the trail of her failed journey from bed to the toilet. The 10-step journey is demanding, dangerous, slow and exhausting.
I imagine everyone has a version of their own demanding journey. I have mine. It is just that my journey dramatically dwarfs compared to hers.
Lonely Walk
“What did you eat for breakfast?”
She gives me a puzzled stare with a contorted face and pursed lips. She tries hard to remember, but the answer evades her. Quickly, she abandons her efforts and balloons her cheeks in an attempt to futilely distract me. She is comical that way.
Neha assisting Rohini during her daily memory exercises
When I press her for the answer, she confidently declares that she again ate her favorite vegetable for the breakfast. Apparently, she has been eating the same vegetable last several years for the breakfast, lunch, and dinner.
Time is excruciatingly harsh on MS patients. Her memory is evaporating by the passing day. Her ability to be mother, wife, and companion has curtailed to the snippets of broken memories.
“What’s my brother’s name?” I follow up with another question. Her husband starts prompting, helping her to recall the correct answer this time. She remembers his name after struggling for some time. However, she doesn’t remember my sister’s name even with prompting. Maybe, one day she will require prompting to remember my name. Maybe, one day she will require prompting to remember her own.
The world has moved on around her over the decade. She remains confined in her room, confiding with herself within the limitation of her condition. Sometimes, she will unexpectedly break into a spurt of laughter. Sometimes, she floats in an unending lull. Even when she is surrounded, she is alone.
Her lonesome walk is not unique to her condition. I image everyone has their own version of confinement as well. I have mine. It is just that now, I am more accepting of mine and others’ limitations.
Rohini at a wedding
Silver Lining
If you ever get a chance to meet Rohini, pay close attention as she goes about completing her menial tasks. See how she drinks water, wears shoes, flips television channels or picks up a phone call. You will notice that the struggle is the only constant companion with her. I assure you, the experience of just watching her will be reviving.
At the Waikar household, the rigor of facing mortality has eroded the shine of responsibility and love, leaving only the barebones of existence and acceptance. The family has no room for theatrics and complexities. They will indulge in simple joys of life. Talking countless hours on phone, obsessing over menial details of life, is a favorite activity at home. Every day, in the evening, Rohini will watch Marathi soap opera religiously. All family functions are attended with great enthusiasm. Invitations to join family over an evening dinner of biryani are generously handed out.
Often, the sheer magnanimity of the task at hand is daunting and overburdening. The Waikar family will deliberately keep the topic of conversations light. Rohini loves simple jokes which involve references to fart and poop. The family embraces emotions as they are - they will laugh at silliest things and cry at a hint of sadness.
Time continues to write Rohini’s obituary while she is still living and breathing. Father and daughter stand together courageously at the face of it. The family lives a liberated but an abnormal life. I am still an oddball in the family. I tend to live a normal but a constrained life. The Waikar family helps me remember that the constraints are not to be broken. Instead, they should be embraced. Joy of life is in simple things. Mortality is real. As I remember these lessons, my 10-step journey starts.
The Waikars
To my love Neha and family - Shekhar and Rohini
Kunal Mahajan
It is with deep regret that we inform our readers, that Rohini Waikar passed away. We will always be grateful to her family for sharing her experience which will continue to be useful to any other family dealing with a similar situation.
