Hidden Truths, The Mind Unraveled Presents Artist Shenaz Haveliwala

Epilepsy News From: Tuesday, September 22, 2015

Shenaz was a 19-year old engineering student when she had her first seizure. She left the university because her seizures could not be controlled with medication and two years later underwent surgery to remove the temporal lobe of her brain to control her seizures.

Shenaz’s Journey

Throughout her journey with epilepsy, Shenaz met people from different cultures, age groups, and financial backgrounds, each with a story to tell. She realized that everyone had his or her own unique problems and epilepsy just happened to be hers.

I had to stop wondering about the 'whys' in my life and instead focus on the 'hows’.

"I was a 21-year-old girl going in for my third video EEG and completely aware that in a few hours, I would be having brain surgery,” said Shenaz. “Watching my mom control her tears had become a usual scene, but today she broke down. She was breathlessly crying.”

“This was killing me. I felt so helpless, even as I was on my way to the operating theater,” she continued. “I have always had this immense trust in the power of love. From the start, I strongly believed that love was one thing that could alter God’s easel. Love is a powerful weapon. Faith is all you need for it to work.”

“It has been 10 years post the surgery, but I’ll never forget that smile on mom’s face and that caring expression on dad’s face,” she added.

In 2009, Shenaz collected funds through social networking websites, which she donated to the hospital where her surgery had taken place. The funds assisted with covering the treatment costs of people with epilepsy who otherwise would not be able to afford it.

In 2010, she started volunteering at the Indian Epilepsy Association where she educates people in Mumbai on epilepsy and campaigns against the fear and misunderstanding associated with the disease. She also teaches English, basic math, and logic to members of the Association. Shenaz interacts with Indian media to highlight the true facts about epilepsy – the invisible disease – and publicly speaks at seminars about her life with epilepsy.

She continues to have seizures and struggles to overcome the side effects of her current medication, but she is happy.

Shenaz has learned to visualize the world her way and has become an entrepreneur. Through transforming her father's spare warehouse in Mumbai into a 15-seat, rent-by-day workspace called “SoboConnect,” she now partly finances her own medical expenses. She earned a website design certificate, despite having 60 seizures that year.

Finding Her Path

"There's no magic pill for it, it is like how you hold the map,” Shenaz said. “You have to find your own way.” She smiles.

In addition to assisting doctors in rural medical camps, she has started organizing exhibition sales events in Mumbai for the members of the Indian Epilepsy Association. These events allow them to sell their handmade products, which creates a means of employment and provides financial support.

Shenaz is also producing a documentary on epilepsy first aid that will be broadcast in cinemas. She has also begun volunteering with ADAPT (formerly The Spastics Society of India), as an assistant special educator.

In 2014, the International Bureau of Epilepsy (IBE) recognized Shenaz as an “Outstanding Person with Epilepsy.”

Hidden Truths, The Mind Unraveled

Shenaz’s painting, “Alone,” will be exhibited and for sale at the Hidden Truths, The Mind Unraveled art show and fundraiser on Saturday, October 3, 2015, at the Gray Matter Museum of Art in Costa Mesa, Calif.

Alone is a painting depicting my feeling when I had to quit university due to uncontrolled seizures. A swing next to the girl is empty, whereas other kids around show elation in company,” explains Shenaz. “Gradually I came across people with epilepsy from all walks of life; each one had a story to tell. Being lonely in a chaotic world is an emotion I have had, especially when society has a deep stigma of epilepsy.”

Hidden Truths, The Mind Unraveled is presented by the Hidden Truths Project in collaboration with the Epilepsy Foundation as an annual fundraiser supporting translational research in epilepsy. This celebration of the arts is designed to showcase the work of artists with epilepsy. Learn more about Hidden Truths, The Mind Unraveled. Get your tickets now to see the inspiring work created by Shenaz and other artists.

Reviewed Date

Tuesday, September 22, 2015

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