In a time when almost everyone is looking forward to a rat race to prove their self-worth, we should pause at times and ask ourselves- “What is the purpose of our life?” Even though the question looks like a hard puzzle for many, it seems that this woman from Mumbai has solved it quite beautifully and efficiently.
In a candid conversation with Life Beyond Numbers, the 31-YO Shenaz Haveliwala says, “If I could go 10 years back, I would have said to my younger self that ‘Never stop believing in good and whatever happens, it is for the best’.”
What sets this woman class apart? Her ability to look for goodness in people, and enthusiasm to live life to the fullest. Shenaz calls herself a Bombayite and had a very liberal upbringing. She says, “I am the only one in my family who is into creative stuff else I have a science family.”
In case you don’t know what Epilepsy is- people with epilepsy experience recurrent seizures, because a sudden surge of electrical activity in the brain causes a temporary disturbance in the messaging systems between the brain cells. Treatment can help, but this condition can’t be cured.
In 2005, while pursuing Mechanical Engineering, Shenaz had her first seizure. “Back then I was 19-years-old. My exams were going on and I was too stressed but never had I thought something this terrible could happen.”
“I had a nervous breakdown, high fever and all of a sudden my I felt like both my body and mind is about to have a complete shutdown. My family was too scared and failed to understand what was happening to me. I was rushed to a nearby hospital where I was in ICU for a week.”
It is easier when a person understands what he/she is suffering from, it gives you time to work on the solutions or look for medications. Shenaz says, “I never knew what epilepsy was. Knowing that I am suffering from this was like a nightmare.”
What triggered volunteering work?
A resident of Mazagaon, Shenaz joined Indian Epilepsy Association in 2010 because she wanted a better understanding of her condition and how to deal with it in the best possible manner. She says, “I went there to get some help for myself but it was a blessing what happened there.”
She continues, “Usually people suffering from epilepsy are very lonely, they hardly have any friends to share or discuss anything and therefore it makes it more challenging for them.”
In India, there is a huge problem in the mindset of people when it comes to providing employment to epileptic people. Shenaz used to travel to distant places in search of work but whenever the employer comes to know about her condition, her credentials were always ignored.
After seeing similar people like her in IEA, who were talented but unemployed, she started teaching them as Special Educator. “I came across children who were never given access to education so I decided to teach them through drawings and paintings. It was necessary to interact with them so that they develop a sense of belonging,” she says.
Apart from that in 2012, she joined ADAPT (formerly the Spastics Society of India), when she came across people with serious neurological problems and she volunteered to work towards the welfare of these people.
“The very thought that I was able to help others, inspire others to learn, helped me to gain back my confidence. Acceptance and love can create miracles and I have witnessed this time and again,” says Shenaz.
Acceptance and love can create miracles and I have witnessed this time and again.
Shenaz is a commercial artist and loves to paint. No wonder her paintings have found a way into Gray Matter Museum of Art in the US where researchers are studying her work to understand the mind of an epileptic person.
Her paintings have a touch of melancholy but it is not something that general people cannot relate to. “It feels good when you get appreciated for your work,” she says.
Sprouting of an initiative- Le Garden
Shenaz has a green thumb by default and it was no wonder that this engineering student liked gardening as well. Therefore she decided to take up a crash course with a reputed company. Since going out or traveling alone was no option for her, she asked whether a certified professional can come home and teach them.
“My mother is like my shadow,” smiles Shehnaz. “She comes with me whenever I go because she is constantly worried about my health.” In no time, she learned about the concept of micro-greens and started reading online about their care and use. “I found that these plants have so much nutritional value that bigger or mature plants.”
I wanted a little indoor garden of my own and my aunt had beautiful French windows, therefore, I thought to utilize them to grow microgreens, which I believe is nature’s superfood, she says. Fresh coriander, amaranth, basil, thyme, lettuce – she has all available items to make wonderful salads.
It was not growing microgreens that triggered Shenaz to become a “Salad-preneur”. “I decided to make healthy salads for my family gatherings and a lady came forward and asked from where did I order it, which meant people found it to be a restaurant quality salad and were willing to pay for it.”
Therefore, Le Garden was born in 2017 and what makes it interesting is that Shenaz has hired epileptic people to prepare these delightful salads. “Being epileptic, doesn’t mean you are deprived of talent, they are normal people as well and I wanted to provide them with an opportunity to become self-dependent.” Now, healthy soups, drinks, and desserts are also available from which you can pick your favorites.
From seizure to Sobo Connect
“I understood there was no point crying over the spilled milk because there was no point waiting year after year in hope that someone would offer a job”, says Shenaz, and therefore she decided to do something of her own.
“Earning was crucial for me on that point of time. It is not that we had a financial crunch but I wanted to be self-dependent. It is silly when people ignore you or hesitate to provide a job just because you are epileptic,” she says.
In 2008, she started Sobo Connect (‘So’ means South and ‘Bo’ refers to Bombay) because after doing her research she understood that people worked in buildings with office space of matchbox size and therefore she wanted to create a space for conferences and meetings that can be rented when needed and is budget friendly as well.
This space proves to be useful when lawyers do out of court settlement, it is like an arbitration hall or if investigators discuss their cases here because now SoBo Connect has projectors too so that meetings can be conducted in an effective manner.
It was not like Shenaz bought a property to start her business. “The idea struck me when I was in my father’s old warehouse and that is when I decided to do something about it and turned it into conference halls. Now we have projectors too and gave it my little touch to add quirkiness to the décor.”
Inspiration to others
Of the 70 million people with epilepsy worldwide, nearly 12 million are expected to reside in India; which contributes to nearly one-sixth of the global burden, says a report.
In 2007, Shenaz was invited as a chief guest at a hospital in Trivandrum on National Epilepsy Day where she received an award for the outstanding work towards the welfare of people suffering from epilepsy.
On asking whether she wished that life could have been better if she were not epileptic? To this she says, “I believe it has happened for good. I feel blessed to be of some use to other people who are going through this. My journey is a lesson and learning experience.” She adds, “We often take family and friends for granted and after going through loneliness, I understood the true value of these people in my life.”
While talking to LBN, Carol D’Souza, who is a counselor at IEA and a former colleague of Haveliwala says, “Epilepsy is a broad spectrum and it is a misconception that epileptic people are not fully functional. Even though there are a few who are facing challenges, but all they need is love and acceptance. They can very well work and find a suitable partner if they want to.”
Further, on asking about Shenaz she says, “This girl has a great attitude to conquer her problems and a supportive family who believes in her.”
Shenaz says that at times, she does feel like getting married to someone or going for a relationship. “Even though we all are complete as an individual, there are moments when I wish to have a partner but then I realize that there is no point running in a rat race and I was born to do something big and provide all the love and kindness I have within me. I love myself very much and I am more than willing to share it with others.”
It was her extensive work and paintings that inspired many across the world and earned her recognition and appreciation and in 2013, IBE (International Bureau of Epilepsy) has honored her with an ‘Outstanding Person with Epilepsy’ award.
“Try helping others. It is very soul-satisfying and will give you immense pleasure,” she adds.