Why Me? Why Not Me? Thank God, ME! — Gulshan Kavarana by Kurush Khodaiji. Published in 2024 by Notion Press Media Pvt Ltd, #7, Red Cross Rd, Egmore, Madras 600008; email: publish@notionpress.com; website: https://notionpress.com/ Pp: 170. Price: Rs 249.
The long title Why Me? Why Not Me? Thank God, Me! — Gulshan Kavarana, informs the reader about the essence of this book: a woman’s struggle to come to terms with and triumph over the cards she has been dealt. This almost-memoir traces Kavarana’s journey in making peace with her reality and along the way discovering her purpose in life.
The narration begins in 1997 with Kavarana settling down in Dubai with her husband Zeheer, a marine engineer, and their seven-year-old daughter, Jenai. While looking forward to her second pregnancy she’s also anxious about whether she will give birth to a "normal” child as she’s now in her 30s. Her anxiety leads her to pray hard and strike a deal with God: for the gift of a normal child, she will volunteer her time for children with special needs.
Kurush Khodaiji: documenting trials and triumphs
Zara (l) and Gulshan Kavarana
Early in her ninth month, Gulshan undergoes an emergency C-section and returns home with the new-born Zara. The family rejoices and, keeping her end of the bargain, Gulshan begins to help out at the Dubai Centre for Special Needs (DCSN) as soon as Zara is six weeks old. But their joy is short-lived. A few hours after her scheduled DPT (diphtheria, pertussis and tetanus) vaccination, two-and-a-half-month-old Zara has a series of violent seizures. The doctor’s assurance about a febrile convulsion being a normal reaction to a triple vaccine, gives them a false sense of relief. Zara has another episode at five months when the family is on a visit to Bombay.
The parents are shattered on hearing neurologist Dr Vrajesh Udani’s damning verdict: Zara is a victim of Severe Myoclonic Epilepsy in Infancy (SMEI), also known as Dravet’s syndrome, a complex form of epilepsy for which there is no cure till date. The child will not only fail to meet the normal milestones but also regress. As any parent’s worst nightmare unfolds, Gulshan goes into total denial and her "Why me?” phase begins. Zara’s sleeplessness coupled with frequent convulsions transforms Gulshan into a zombie. Because of acute photosensitivity due to brain damage, Zara cannot tolerate light, so their home is in perpetual darkness both actually and figuratively. Gulshan feels alone and helpless although Zeheer and Jenai try their best to navigate this situation with their unconditional love and care for "Zaru baby.”
Her desperation drives Gulshan to try anything and everything from "doctor shopping” to holy mumbo-jumbo to find a cure for Zara’s condition. "It took me many years and many breakdowns to realize the true meaning of the old cliché ‘accept.’ Acceptance like a river takes its own curves and bends, difficult but flowing towards something,” says Gulshan. With this realization she flows into phase two of her journey, "Why not me?”
Gulshan carries on working at DCSN. When her search for a support group for parents of special needs children proves futile, a colleague suggests, "If you can’t find one, start one.” Teaming up with psychologist Ayesha Saeed, she establishes the Special Families Support Group (SFS) with just six families in 1999 in Gulshan’s living room. Perhaps events surrounding SFS mark Gulshan’s entry into phase three, "Thank God it’s me!” Within a year SFS grew to 200 families and by 2024 it has provided support to 500 families.
In the book Gulshan expresses gratitude to the strong and silent Zeheer who is "the wind beneath her wings,” Jenai, who is virtually a second mother in her devotion towards Zara as well as her extended family. Besides the family, an occupational therapist, Saif Bijliwalla, who helps Zara and the other children to master self-help skills and Vanessa Sequeira, a special educator, is another angel who becomes a great support, and her friend, Jeroo, whom she relies on in any emergency.
Through SFS, Gulshan became a well-known figure, not afraid to speak in public for a cause close to her heart. "My world gradually began opening up. I connected with many wonderful people. I would teach, volunteer, help raise awareness and secure finances for the special needs community. This was now my life,” says Gulshan. In 2008, the Kavaranas became the joint recipient of The Princess Haya Award for the most outstanding special needs family.
She set up an art studio, Mawaheb, in 2010, where children and adults with special needs could learn life skills through art. Gulshan, a commercial artist by training, urged her students to express themselves freely. Exhibitions were held where the art works were sold. Unfortunately, Mawaheb shut down due to the pandemic but Gulshan continues to mentor students in art. Although Zara, who turned 27 in 2024, continues to have seizures, Gulshan is able to take things in her stride. She hosts a podcast where POD stands for People of Determination (POD.castbyGulshan).
The book, authored by Kurush Khodaiji, is written in the first person as though Gulshan is the narrator. Though the first person gives the narration intimacy and immediacy, to my mind the book would ring more true if written in the third person. For a debut writer, Khodaiji has done a decent job of showcasing Gulshan’s journey. But while the mother is central to this saga, I would have liked to see quotes from significant others such as her husband and her elder daughter. The writer’s attempt to go use flashback mid-way through the book to acquaint the reader with Gulshan’s apprehensions during her second pregnancy may cause confusion.
The book scores in giving hope about the power of one: an ordinary albeit determined woman can become a change-maker lighting up the lives of countless others. Never in her wildest dreams would Gulshan have foreseen that Zara’s birth would make her an indefatigable crusader for children of a lesser God.
ZARIN VIRJI
Virji is an educator and a writer who dabbles in poetry, short stories and fiction for middle grade readers. Her reading favorites are detective stories and crime thrillers.