W&M grad Shalin Shah ’19 served as full-time student, caregiver
You need to come home, Shalin, his uncle said.
Shalin Shah ’19 had heard the words many times since leaving home for William & Mary. Once again, he grabbed his keys and headed for the car, the road and all of his responsibilities.
It was the spring of his junior year, jam-packed with academic projects and deadlines. It was also the start of the most challenging time yet for him and his twin brother, Shivan.
They worked together through four years of worry, caregiving and decisions to manage debilitating illnesses suffered by both of their parents to get to their respective Commencement ceremonies this month. The journey brought lots of lessons, tough tradeoffs and a twist of a career choice to Shalin.
“My four years at William & Mary haven’t unfolded in quite the way I imagined,” Shalin said. “I was simultaneously a full-time student and caretaker. But I wouldn’t trade it for anything, in large part because of the mentors I’ve gained in the religious studies department, and for the knowledge I gained as a student of religion, knowledge that I think played a key part in helping me through the trials I’ve faced over the last year.”
A family grows
The Shah family landed in Virginia by way of New Jersey and North Carolina.
The twins’ mother, Jagruti, emigrated from India to New Jersey during high school. The man who would become her husband, Sunilkumar, made the same journey years later, and the two were introduced and married.
They had twin boys and relocated to Raleigh, North Carolina, to work with family members and later to Chester, Virginia, outside of Richmond when their sons were in 7th grade. Sunil started a business with an uncle working in convenience stores, and after living in an apartment with him for a while, the Shahs bought a house.
As the boys grew up, Sunil grew his business, and Jagruti worked as a bank teller for decades.
The family had always been religious, and his father had always been pretty spiritual, Shalin said. After taking an introduction to religion class as a high school sophomore, Shalin became interested, too.
With his sights previously set on a career as a doctor or engineer, Shalin made a different choice.
“My junior year in high school, I said I really hate this,” Shalin said. “I really hate the math, the science. Do I want to spend four years doing this? I just wanted to be honest with myself.
“And I was fortunate because my parents always said really study what you want to, study what you’re passionate about, what you love to learn about. I was like OK, I’m going to go to college, and I’m going to study religious studies. I’m going to give that a shot.”
Shalin chose W&M and a religious studies major, while Shivan was off to the University of Virginia.
Sunil’s health declines
As his sons departed for college, Sunil started to show small signs of a decline in energy and strength. By the end of their freshman year, he was no longer able to lift cases of water in the store.
His wife pitched in after work and his sons helped when they were home on weekends, but Sunil eventually stopped working and handed duties over to his employees. He sold the business a year later.
Sunil continued to lose strength and dexterity, and saw doctor after doctor. After losing the use of one of his hands, he was given a test to gauge his muscular strength and response.
During Shalin and Shiva’s junior year, doctors officially diagnosed Sunil with Lou Gehrig’s disease — amyotrophic lateral sclerosis — an incurable neurodegenerative disease.
He stayed home mostly in a favorite chair, with one of the boys’ grandmothers on hand to keep a watchful eye and help make food for him. Jagruti continued to work at the bank, taking over his care after she got home.
Shalin and Shivan helped out during the summers. Sunil eventually struggled to walk and, after a fall, the family decided to apply for disability for him and get a nurse to come in for a few hours each day to bathe him and get him to the bathroom.
“Growing up, my dad worked three jobs,” Shalin said. “We didn’t have a lot of money, but three jobs. He would get up at 6 a.m., take the bus downtown and work three jobs. Now he couldn’t lift himself up out of a chair.
“Just seeing stuff like that, someone who I always looked to as a strong figure in my life, was just physically weak. But then he had a hard time coping with the diagnosis too; his mental health wasn’t always there. And that was hard for me and my brother.”
Stress takes a toll on Jagruti
As Sunil’s health deteriorated, his sons came home more and more often. Shalin began to commute 45 minutes daily to Chester to watch over his father at night so his mother could sleep before working.
A nervous tic in Jagruti’s neck caused by stress and nervousness became a lot more frequent. At the start of their junior year at college, her sons started noticing little things such as her talking to herself more often when they’d walk into a room. Upon doctors’ advice, Jagruti started attending behavioral therapy.
A little more than a year ago, the twins’ grandmother called and put their father on the phone. Despite having a hard time talking, he got across to Shalin that his mother wasn’t acting right.
“It was in the middle of the school day, mid-term time, stressful for me as a student, stressful for my brother,” Shalin said. “If anyone was to come, it would have been me — I’m 45 minutes away versus my brother who’s at UVA, which is an hour-and-a-half drive.
“And so I made a couple calls and got my uncle to get off of work early and go check on her, see what’s happening. He was like she’s not right, you need to come home.”
When he arrived, Jagruti was hallucinating, talking to herself, her hair was a mess and she was running around the house, Shalin said.
“We tried to get her to calm down,” he said. “But she was just constantly looking up and up. And she wasn’t even listening.”
He took her to the hospital, where Jagruti was diagnosed with acute onset psychosis and admitted to the psychiatric ward. She would be there for a week and a half as extended family came from North Carolina to help, with Shalin spending the maximum two hours of visiting time per day and sometimes more time trying to get her to eat, take her medicine, attend to hygiene and become aware of her surroundings.
“She really wouldn’t listen to anybody except me,” Shalin said. “I’d be there the entire two hours of visiting time bringing her food, feeding her with the spoon. To finish a cup of coffee or tea would take her an hour because it was constantly trying to get her attention, get her to focus. And the entire time, she’s hallucinating, talking to herself, trying to run around, having these kind of like manic episodes.”
Doing double duty
That week Shivan was in the middle of midterm exams at UVA, so he would go home after he finished.
“So I spent four or five days with my dad,” Shalin said. Sunil couldn’t really walk and required more help in the bathroom, so only male family members helped.
“It was hard; I was frustrated. I wasn’t going to class, wasn’t doing work, didn’t have time for that. And just taking care of them. And then when my brother got here, we were able to do it together.”
Shalin had to contact his mother’s employer to tell them she couldn’t come in, walking a fine line to protect her privacy and preserve her job while fending off their insistence to speak directly to her. Jagruti was the sole breadwinner for a family that up until this current school year wasn’t eligible for financial aid for their two sons in college, with her husband’s disability checks going toward his doctors’ visits, medications and nursing care.
“So trying to do that, help keep her job, stay on top of that, going to the hospital, and then when I’m done with the hospital we’re taking care of my dad,” Shalin said.
The brothers didn’t sleep because they were constantly waking up to make sure their father was still breathing, he said.
“I would just literally pick him up in my arms, he weighed maybe 90 pounds, and set him in bed, say goodnight,” Shalin said. “He was so appreciative of the selflessness of me and my brother.”
Jagruti was discharged after being prescribed anti-psychotic medications and psychiatric therapy, but she couldn’t return to work. When Sunil saw the first of her two relapses that took place at home, he was moved to tears, Shalin said.
Back to school
Behind on his schoolwork, Shalin considered withdrawing for the semester. He also talked to the dean of students about deferring his exams, but ultimately decided to power through, completing his work on time.
“Honestly I think it was just pushing through it every day — as soon as I get this done I can go back home, I can really spend some time with my dad,” Shalin said. “I think that was the biggest motivation for me because we could just tell he wasn’t getting better. … And I said I want to just enjoy the time that I have with him.”
Throughout his junior year, he received a tremendous amount of help from the W&M Counseling Center, Shalin said.
“They say being a caretaker is not easy, especially when you can’t be there full-time or when you have other priorities, especially at this time of life,” Shalin said. “Most people would think about their future, trying to perform really well in school, especially at this school because the rest of their life is riding on performing well, doing well.
“I also felt like I owed it to my professors to do well. But I just had something that was more important — that was family. So I just kind of persevered through it. I just went in and did it.”
Religious studies faculty members were tremendously understanding and supportive, Shalin said.
“It was definitely a situation where we felt like it was just turned on its head,” Shalin said. “And so it was hard. Our parents sacrificed so much for us, and so we were happy to sacrifice for him, too.”
When the time came to designate someone to make his final medical decisions, Sunil pointed directly at Shalin. In mid-July, Sunil was taken to the hospital for the last time.
After consulting with family members, Shalin made the decision that his father would not be put on a ventilator to prolong his life. The family took shifts sitting with him around the clock, and on July 12 at about 3 a.m., Shalin and Jagruti were there when Sunil passed away at age 56.
Shalin stayed with family often, helping his mother through the extremely difficult period. In the past year, she has slowly made her way back to work part-time and now full-time.
“It’s a lot of worry over the past four years,” Shalin said. “And even when you’re here, you feel like you shouldn’t be. You feel like you should be there with him. … He always wanted us to stay in school. There was a point in my junior year, even before my mom went to the hospital, that maybe we’ll just take this semester off. He adamantly refused. He was like, no, come home and visit me and whatnot, but stay in school.
“Because one of the reasons why he emigrated was he wanted a better life for me and my brother and being in school was a part of it. He was always just really proud of us for going to school.”
What’s next
Intrigued by religious studies as a way of studying people and what matters to them, Shalin had planned to go on to obtain a Ph.D. in the field. The more he listened to the philosophy behind all of it, the more he considered what would be the best use of the rest of his life, he said.
“I’m going to be a firefighter when I graduate, which is actually in and of itself informed by my studies,” Shalin said.
He cited Assistant Professor Oludamini Ogunnaike’s discussion of the greatest Sufi sayings, and the idea that religion isn’t just something you think about, but it’s something you put into practice every day.
“And what does that mean for me? What gifts do I have?” Shalin said. “I read somewhere that the goal of life is to find your gifts, but your purpose is to give it away. I think for me to contribute to my community is important.
“My moral compass leads me to do that. I like the physical; I’m a pretty physical person, too. That job is kind of like the perfect marriage of both.”
Shalin’s extended family will be at his W&M Commencement on May 11 and at Shivan’s at UVA the following weekend. Shalin is applying to fire departments around the Richmond area, where he plans to once again return home.
