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Rita and Sunil Kapahi: The Bend in the Road is not the End of the Road


Human beings cannot be relegated to being mere statistics. The story of a family's struggle against life's curveballs.


 He sits before me trying to speak through a metallic device pressed against certain sweet spots on his throat, struggling at times and using a paper and pen to convey what the metallic voice from his throat cannot.. At other moments he is clear and lucid and even sings a couple of Punjabi songs in tune in a robotic voice that makes every one smile and gets the kids excited and fascinated. Sunil Kapahi, a brilliant IIT Delhi (Indian Institute of technology) and IIM (Indian Institute of Management) Calcutta graduate has had so many curveballs thrown his way in his 47 years that at times he must be wondering if the recurring bends in the road he is journeying on, is just the way a road travels. 

(Top) Sunil & Rita Kapahi (Bottom) Sunita and Vineeta

He was all of ten months old when his parents split and his mom left Ludhiana, along with her two sons to return to her father’s home in Delhi. “I was told my father was in New Zealand, each time I asked and that my maternal grandfather was my father. By the time I was about 4 or 5 I knew instinctively there was something fishy about the story,” says Sunil Kapahi, whose father was a well known physician in Ludhiana.

Sunil and his older brother grew up in Delhi in a joint family. A brilliant student Sunil aced his way through school and made it to IIT Delhi. Yet his own questions about his father haunted him to the point that he wouldn’t mingle with fellow IITians during the first few months. “I was afraid they would ask about my father and I wouldn’t have an answer.” It was later when he was at IIM Calcutta pursuing an MBA that he decided he had to know the truth, about who his father was. He had jotted down his father’s address from the alimony checks his mother received, landed in Ludhiana only to find his father happily remarried and a father of three other sons. “ My reception was less than welcome, by his new family and by him and I had to meet him outside.’ The reunion didn’t turn out like the Bollywood ending we see in films where the long lost father and son embrace and all’s well with the world, but at least it put a closure to Sunil’s quest to know.

Sunil joined the Tatas, and his first assignment abroad landed him in Detroit in 1983. ‘It was a culture shock. The America of my dreams meant either California or New York, the hot and happening cities. Detroit was the pits!’ Three month later seeing an ad for a job in Atlanta, Sunil left Detroit, without even bothering to check what kind of a job it was. Luckily the head of the company PCS, was Krishna Srinivasa and Sunil recalls being very well treated by him.
It was the switch to PCS that introduced him to a woman who would play a key role catching all the curveballs and bringing balance in a life that was to start spiraling out of control only a few years after their meeting.

The woman was a Bengali fellow engineer named Rita Das. The two met in the company office and started a conversation in which several other colleagues participated. At one point Sunil made a wise crack using the typical IIT lingo and the only person to catch his drift was Rita. That started a friendship that soon evolved into something else. Sunil would call Rita every day and make his usual wisecracks, from hit dialogues of famous films, when Rita finished a project ahead of time “ Project jaldi khatam kar diya to kya socha sardar sabasi dega?(Just because you finished the project ahead of time did you think the big man will applaud you?”) twisting the famous Gabbar Singh dialogue from the film Sholay, to making a dessert every weekend and showing up at mutual friends’ place under the pretext of playing tennis.

Sunil found her very easy to talk to and today he still calls her his best friend. Yet the day he told her he had feelings for her clutching a cushion as he sat across from her, Rita laughed at him and told him not to harbor such feelings. “ Firstly I was a Bengali, and he a Sindhi Punjabi but most importantly there had never ever been a love marriage in the family. I told him his family would not only not welcome me, he would get yelled at as well. 

Then he said dramatically-you are not marrying my family you are marrying me! He kept calling and came up with another filmi one-mere saath chaar kadam chal ke toh dekho( at least just try walking four steps with me)!”

When she finally gave in and Sunil informed his mother that he was interested in Rita, just Rita’s name was enough to have the family in a tizzy.” They thought I was a Christian, and perhaps some fast moving, short skirted floozy who had ensnared their poor innocent boy!”

Initially Sunil’s mom said traditionally he could not marry before his older brother did, and since there was no one on the horizon the family was hopeful that the wait may result in the relationship fizzling out. “I guess the saving grace for his mother was to see me doing my prayers and realizing I was a Hindu and also she never saw me in a mini skirt!” Sunil and Rita went ahead and got married in 1984 in the USA, but had to go through two more marriages in India to appease upset relatives, some upset for other reasons than the fact that the two got married in the USA and not India. “There was Sunil’s uncle who felt they missed out on a fat dowry. He had the daughter of a wealthy friend in mind!”

The Indian marriage took place in Sunil’s home town and his school the Salwan Public school. ‘Imagine the baraatis sitting on little classroom chairs!” says Rita laughing.

As the young couple began their new life together, unknown to them dark clouds had already started swirling around.

Sunil had been suffering from what they thought was Spondalytis off and on, but actually turned out to be his immune system attacking itself. By the time the true problem was finally diagnosed in 1988, Sunil was well on his way to complete kidney failure. “ He was told kidney failure would occur in 10 years, it happened in five,” says Rita. “All he needed was immune suppressants and he would have been fine. Instead the doctors continued giving him medicines like ibuprofen for the pain thinking it to be Spondalytis.” 

Then came the rounds of hospitals for dialysis, a sudden disorientation resulting in a stroke. Rita remained calm and collected much to Sunil’s surprise. “ I come from a family of very strong minded people. My father had started having all kinds of health problems from the time he was in his early thirties, but my mother handled it all with patience and inner strength” says Rita and adds, “ I had seen worse back home in India from a friend’s brother dying of kidney failure and so many other sufferings. I have also had deep faith that the God who creates these sufferings for us also gives us the strength and help to overcome these difficulties.”

Two and a half years later after his kidney failure in 1993, Sunil received a kidney and responded very well. “ Even though only 2 out of the required 5 characteristics matched, the anti rejection drugs have become so good that they were able to do the transplant,” he says. Sunil felt healthy enough to go back to work, play tennis regularly but then the kidney rejection began and along with that came epileptic seizures. In fact unknown to Sunil he had started having silent seizures even before the transplant occurred. “He would be talking to people and suddenly blank out while still standing there, staring at the people. He would not fall down, that happened much later, but he would recover, and not remember that he had blanked out. People around him started noticing that. For the brightest bridge players and one of the sharpest minds in IIT, this was the beginning of a long road to devastation.

The first time Rita saw Sunil having a grand mal seizure, she thought he was choking and put her finger inside to stop him from biting his tongue, only to have her finger bitten so hard it took 6 months for the finger nail to come back. Rita says Sunil’s seizures were not visible unless he was standing and she would only realize he had one when she would see blood on his pillow, or he would fall down and hurt himself and have no memory of it until she saw the bruises. “Another sign was that he would lose all concept of language, understanding only Punjabi when he came to, followed by Hindi a few minutes later and then English, “ says Rita. Initially the doctors let him drive and go for walks thinking the seizures were the nocturnal kind. All that stopped when he lost all sense of direction and rode up and down the train for 3-4 hours not knowing where he was. The seizure happened a couple of times in the car but Rita was able to grab the steering wheel and control the situation. “One time he broke a rib and we only realized it had broken and healed during an X-Ray for another thing,” says Rita. He was then told by the company doctor he needed to stop working as he was becoming a hazard for others and for himself.

From that moment onwards, since the mid nineties, Sunil Kapahi has been on disability and at home, not permitted to drive or even take walks alone for fear of getting hurt when a seizure comes.
Rita has hung in there for several years, handling an elderly mother in law who was ailing, raising two young daughters Sunita and Vineeta and dealing with Sunil’s bouts with depression as he comes to term with the fact that the stroke and the seizure have wiped out his short term memory so he can’t work.

Sunil would invariably have some problem or the other and they have become a permanent fixture at most hospitals. “It’s quite funny when busy doctors and surgeons who are always rushed for time and see thousands of patients would see me shopping at Kroger and walk up to me and ask, “How are you Mrs. Kapahi?” laughs Rita. “ We are probably the most recognized family in hospitals around town!”

Perhaps the most troubling thing has been the fact that intellectually Sunil doesn’t fit the criteria for counseling. In spite of his stroke his IQ is above the 85th percentile, and he has a family to turn to. Even though he answered several questions related to being depressed in the affirmative he was told by the psychiatrist they couldn’t do anything in terms of rehab. In 1996 they had suggested anti depressants but Sunil refused. Today there are many more support groups, and counseling available to patients as compared to when Sunil fell ill.

Sunil’s two daughters Sunita and Vineeta, who are in High school have seen their father’s struggles and say they have grown up a lot faster than other kids. “ I remember being about 5 when my father had complete kidney failure,” recalls Sunita, “ and my little sister who was about 2, went up to my father, patted his leg and said don’t worry Papa you will be fine. At that age most kids are playing with dolls, safely cocooned in a utopian world, and here was my little sister, actually realizing that things may not be good.” For Sunita, this has led to a chosen career path in neuroscience, though Vineeta says she is saturated with hospitals and a medical career is not high up on her list.

Both girls feel that in spite of all the hardships and struggles and their mother juggling a career, home, and a sick and often cranky husband, they have a fairly normal life. “ It has been nice to have our dad at home when we get back. This has made us both stronger and changed our perspective on what is important and what is not,” says Vineeta. Sunita agrees, ‘ You’ll rarely see me involved in the social melodrama that goes on in High Schools, on who’s dating who and who’s wearing what. I am more concerned with how my dad will fare while we are at school and he happens to have a seizure. I think I have also realized that all the other issues I have had to deal with, getting through the teen years, my own bouts of depression are problems I can overcome because we have gone through so much as a family.”

In spite of all the frustrations, Rita has held it together and taken all the ups and downs in her stride. In a life that is not normal and each day is fraught with uncertainty where Sunil is concerned, they were trudging along when Rita started noticing a sudden change in Sunil’s voice a few months ago. “Initially I thought it was a side effect of the throat surgery he had had for sleep apnea. then I noticed a weight loss which I attributed to some severe bouts of depression that Sunil had had on and off for a year in spite of finally taking anti depressants,” says Rita. A check up revealed cancer of the esophagus. Unfortunately the way the tumor was situated, the doctors said they would have to remove the voice box.

That was the time Rita lost her usual composure and broke down. Sunil on the contrary tried to be very brave and said if he had to lose any faculty the voice box was the one he would miss the least. The surgery, an 8 hour affair was performed in June. “ Perhaps the most heart breaking thing was seeing him regain consciousness and trying desperately to speak when he saw me and the girls, not knowing he had no voice to speak with,” says Rita.

Today a few months later, Sunil has gone through chemotherapy and radiation, moments of severe depression and helpless anger as he struggles to relearn how to speak again through the metallic device pressed against certain areas of his throat. When he finds the sweet spots things work well, when he doesn’t he gets frustrated and angry if he isn’t understood right away.

Seated for this interview, Sunil says he does try his wife’s patience but expects her to understand because she is still his best friend. Rita jokingly retorts, “ Well I’m getting old too. At times you don’t understand what you are saying yourself, don’t you think you should be more patient and tolerant of me?” Sunita says she is amazed at how her mom keeps it all together, going to work, tolerating her father’s mood swings, raising her daughters and dealing with their teenage issues, even if Sunita wakes her up in the middle of the night to discuss something that is bothering her.

Rita always wanted to go back to India and Sunil refused. Today his stubbornness may have just saved his life. ‘ I know there is no way he could have gotten this kind of medical care, admits Rita. “ This is a strange society where I see a lot of self absorbed people, but we have been lucky to have friends who have stood by us and helped us out in such great measure.”

Sunil is now discovering new facets to his own personality as he struggles with feelings of low self esteem, the fact that he hasn’t worked for close to a decade. He has been writing, and discovering in the process an ability to tell stories that are captivating. Sunita who loves writing herself is helping him edit and brainstorms with him. She also steps in when tempers rise and patience snaps and she sees her parents arguing. “I tell them you have gone through so much together for 20 years, so just hang in there. I tell my dad I expect to see him around when I get married and play with my kids, so he had better stay positive.”

The future remains uncertain, but Rita says human beings cannot be relegated to being mere statistics. “When Sunil got the transplant, he was told for the kidney to survive rejection, the success rate is 90 percent, in the first year. It goes down to 70-80 percent in the 2nd year and after the third year there are no guarantees. It has been 10 years since Sunil’s transplant, with God’s grace. Its now the same thing with his cancer. The statistics are again scary, but I believe tremendously in the power of prayer and the human will to over come obstacles and I know we will make it.” 









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