Memorial Fund for Chandra Narain

Summary

Chandra Kanta Narain was a loving mother and devoted friend who served the Santa Monica-Malibu School District’s visual and performing arts department for 23 years. Working behind the scenes, she would coordinate the annual two-day Stairway to the Stars concert which showcased over 1,000 student performers. Tragically, she was diagnosed with ALS (also known as Lou Gerhig’s Disease) in 2011 and had to leave her job in 2012 due to her illness. Chandra passed away Tuesday January 11th 2022 after living with ALS for 11 years, over twice as long as the average life expectancy after a diagnosis. We miss her terribly and still can’t believe she’s gone. We want to honor Chandra by providing her with a traditional Hindu funeral service in accordance with her lifelong devotion to her faith. We also want to give back by donating to the ALS foundation which helped her through her illness. Any and all donations are greatly appreciated.

(Chandra and her son Jainesh circa 2015)

 

Long Description

Chandra Narain was born in Fiji on March 1st 1966. In her early twenties she moved halfway around the world and settled in Los Angeles, California to start her family. Although she was incredibly busy raising two boys as well as sponsoring and hosting family members wishing to immigrate to the US, Chandra went on to build an incredible career in the Santa Monica-Malibu Unified School District. She started as an administrative assistant in the educational services’ visual and performing arts department and enriched the lives of students through her dedication to the arts. Chandra’s department provided services to all the teachers and students in grade K -12th in dance, drama, music, and visual arts. Most notably, the department would host an annual two-day, district-wide instrumental and vocal music concert called Stairway to the Stars where approximately 1,000 students performed for 1,300 audience members at the Santa Monica Civic Auditorium:

“I would be the person coordinating the majority of the tasks behind the scenes with the help of some parent volunteers. It was an overwhelming job but I loved my job and I was truly blessed with the wonderful people surrounding me. This was my only job in the United States of America and I am proud to say that I have learned and accomplished a lot.” ( quote from Chandra's diary)

Chandra's life changed forever when she was diagnosed with ALS (also known as Lou Gehrig’s Disease) in March 2011. Early symptoms included muscle cramps, weakness, spasms, and a limp but soon progressed to loss of her voluntary muscle functions including her ability to walk, speak, and move most of her body.

“I had to use a walker since I couldn’t balance myself. The music department co-workers bought me a walker with a seat and I was terrified to use it but had no choice. I still couldn’t believe myself that I was not going to get better…...Doctors told me I would live for 3-5 years…there is no cure for it. It was very difficult for me to accept the illness. It was devastating.” (quote from Chandra Narain’s diary)

 

(Chandra and her co-workers at her Santa Monica nursing facility, 2018)

 

As her illness worsened, Chandra had to go on disability and reluctantly left the school district in October 2012 after 23 years of service. The first few years following her diagnosis were incredibly difficult. On top of dealing with her divorce, Chandra struggled to find affordable quality home care. Her loving son Jainesh was working and going to school full time while caring for her himself in between professional caregivers’ shifts. In 2016 Jainesh moved his mother into an assisted living facility when the cost of at-home caregivers became too high to be sustainable. Due to complications there, Chandra lost 40 pounds in 10 months and had to get a G-tube inserted so she could receive supplemental feeding.

By 2017, Jainesh was able to place his mother in a Santa Monica skilled nursing facility where she got better care that she had been receiving at the previous facility. Although it was an adjustment at first, Chandra settled into the facility and her staff of CNAs, LVNs, and RNs grew to love her caring spirit and warm nature. Chandra was known for having a jar of candy and offering it to any staff members she encountered throughout the day as a token of her appreciation. She was incredibly generous with her care team and would often do things like buy baby clothes for staff on maternity leave and purchase gift cards for all the different shifts during the holidays.

 

 

(Chandra with her son Jainesh and his girlfriend at the Santa Monica skilled nursing facility, 2020)

 

On January 11th, 2022 around 6:25pm, Jainesh received a call from the nursing facility that his beloved mother had passed. The average life expectancy for ALS patients after diagnosis is 3 to 5 years, but Chandra lived with it for nearly 12 years. Although many people who knew Chandra felt that her passing was imminent, we are still in shock and it feels very surreal that she’s gone. In order to honor her memory, we want Chandra to have a traditional Hindu funeral service in accordance with her strong lifetime devotion to her faith. We also want to give back to the organization that helped her through her illness by donating to the ALS Foundation. We feel that this is the best way to send her off on her journey. Although we miss her terribly, we find solace in the fact that she is finally at peace and is no longer suffering. Any and all donations are greatly appreciated. We thank you for your generosity.

 

(Chandra at her favorite restaurant, 2015)