“The chances of developing epilepsy are 90% in infants, or young children. And most of them don’t get to go to school, study, or make friends. I first learnt this when I visited a neuro-counselor’s institute, and I saw only children in the epilepsy section. I soon began to help them to learn and study, while simultaneously myself learning how to teach.”

This was Shenaz Haveliwala, who got diagnosed with epilepsy at the age of 19. She was pursuing bachelors in mechanical engineering back then, and the diagnosis turned her life upside down. But a true fighter, Shenaz paved her way ahead, and having won the prestigious award ‘Outstanding Person with Epilepsy’ by The International Bureau of Epilepsy, she is today an inspiration for many.

In our long conversation, she talked about her experiences, her struggles, and opened up on how her family and friends gave her the strength to live a confident life.

So what is Shenaz doing today? Well, it’s been 12 years, and Shenaz has come a long way from completing a masters degree in commerce, to being a commercial artist, an entrepreneur, teaching children with epilepsy, and also nurturing her passion for salad and gardening in the form of ‘Le Garden’ in Mumbai. And if you meet her today, you will see a driven young woman, who is running her own salad company, and living a life free from the fear of seizures!

Wish to know more about Shenaz’ journey? Read on:

Tell me a little about the time when you were diagnosed with epilepsy?  

It was terrible. Forget response, we didn’t even know what epilepsy was. I was studying mechanical engineering, my exams were going on, and sometimes I would get a bit too stressed, but neither my family nor I saw it coming. That day I just went blank and my body turned cold. My mother rushed me to the hospital, and all the tests except for Phenytoin, the anti-epilepsy drug, came negative. The doctors, too, were just as shocked, because epilepsy is a neurological disorder that is found more in infants or young children. 

The next few years must have been very difficult.

For two to four years, Mom and I were just at home, avoiding all weddings and social gatherings. It was tough, very tough. I had always been a people’s person who loved meeting and interacting with people, and here I was, suddenly taken far away from my studies, books, tuition, friends; it took me a lot of time to absorb the shock. And meanwhile, the treatment had also started, I was advised surgery by my neurologist, for which we went to Kerala. It was a really good hospital, and for some time I had to go there every year for follow ups.

Did self-restriction play a role in your withdrawing from stepping out? 

It is the fear of ‘what if I get a seizure’ that restricts people. But a big part of it is society’s reaction. According to me, the thought of what will people say magnifies the fear. Especially because in our country people associate it with ‘bhoot pret’ (ghosts and spirits). It is really sad. 

Indeed. Do you think society makes it even more challenging for girls with epilepsy, as compared to boys, perhaps?

Um, I haven’t thought about it that way, but yeah, now that you said it, the way our society functions, it could create more problems for the girls. And the pressure of marrying their daughter in an affluent family could stress parents, and in turn the girl, even more. But if we think about it, it is the same for boys also. If having epilepsy reduces the chances of finding a good life partner, it holds true for both girls and boys. Though my wish for every girl with epilepsy is that she gets to go to college, and also fall in love and get married.

And what do you have to say about the role of family’s support?

It plays a huge role, and I am blessed to have a very supportive family. When I was working with ADAPT, we used to often have a debate that whether a person with epilepsy would want to marry someone who also suffers from it, or not. And the result was always 50-50, some people believed that if both had epilepsy, them and their families would know how to support them, whereas others would say that if only one suffered, the other one could be more helpful. So yeah, bottom line being, their support does make a lot of difference. 

What kind of measures does one need to take when travelling?

One has to be careful when travelling, I have a personal driver, but if he is not available or when I am travelling outside, either my mother, or brother, or some friend is always there with me. I am very thankful to have such caring and supportive friends. 

That’s nice. Let’s get talking about your venture, ‘SoBo Connect’. How and when did it come in the picture?  

It was my dad’s old warehouse, which I converted into a conference hall. I knew the people who worked in that building and nearby, all with matchbox offices, and their visible requirement of a conference hall that they could rent when needed, is what triggered the idea of SoBo (South Bombay) Connect in my head.

Then you also got associated with the Bombay Chapter of the Indian Epilepsy Association, and worked as a special educator at ADAPT? 

So back then, when I was meeting a lot of doctors, a few of them suggested I see a neuro-counselor. I started consulting one, and I saw only kids at her clinic/institute. Initially, she gave me the same tasks and activities that she assigned the kids with, and I was taken aback to find that they had never gone to school. So I happened to help them learn and study, and gradually began to teach them different subjects, while simultaneously learning how to teach them.

With time, more parents and kids started turning up, and I further came in contact with the Indian Epilepsy Society, which then soon detached itself from there and became an independent organization that now runs under the name of ‘Samman Association’. 

Is that what led the International Bureau of Epilepsy to award you as the ‘Outstanding Person with Epilepsy’ in 2014?

There is a museum in California, Gray Matter Museum of Art, it holds exhibitions to sell paintings, and uses that money to support studies and research on Epilepsy, and since I am also a commercial artist, I sent my paintings to them. So through the museum, the International Bureau of Epilepsy got to know about me, and that time I was also working on the rural camps conducted by Samman. So perhaps all the factors contributed. 

Amazing. And how did you come to planting ‘Le Garden’?

Haha. Well, I’ve always been way too health conscious, and I used to have salads once or twice a week, but looking at my preparations, most of my friends and relatives would think that I order from outside. Add to that my love for gardening, because of which I got associated with this organization called ‘Blue Garden’ to expand my knowledge. So somewhere both these two things added up and led me to conceive the idea of ‘Le Garden’.

Juicy pear, barbeque chicken, baby spinach in a raspberry dressing. Yes, it is different and, WOW it is yum!! To order ctc: 9820563342 https://www.swiggy.com/mumbai/le-garden-mazgaon-byculla Uber eats www.gourmetdelight.in #legarden #salad #healthyfood #mumbaifoodie #tasteofmumbai #cleaneating #business #eatgood #foodphotography #protein

10 Likes, 1 Comments – Le garden-The Salad Company🇮🇳 (@legarden.co) on Instagram: “Juicy pear, barbeque chicken, baby spinach in a raspberry dressing. Yes, it is different and, WOW…”

And in the process, I learnt what micro greens are and gave planting them a go, which was a success. So I now grow a lot of lettuce, spinach, and beans in my little home garden, and love to use them in my salads.

Which would be your go-to sauces and dressings? 

I absolutely love garlic and honey herbs dressing, and use that in a lot of my salads. 

And I have read that people with epilepsy are prescribed a Ketogenic diet plan? 

Yes, and I am currently on it. It is even advised to kids suffering from epilepsy. It’s basically a high fat, average protein, and zero carb diet, in which you can’t have veggies, fruits, and anything sweet. Initially, there is a 1-2 week washout period, and then either the doctor advises it for nine months, or 1-2 years, depends on various factors. I make keto diet salads on orders; we’re supposed to consume cheese, mayonnaise, soya, and chicken.

Cheesecake! The perks of being on a keto! 😍 Ctc: https://m.scootsy.com/le-gardenthe-salad-company-mazgaon-3688.html #legarden #ketodiet #diet #zomato #eatright #eathealthy #healthylifestyle #healthyeating #mumbai #mumbaifood #mumbaifoodie #somumbai #southbombay #salad #saladlover #cleaneating #loveyourbody #fitness #fitnessfreak #gym #fitgirl #healthyandta #dessert #foodporn #foodblogger #foodphotography #instafood

20 Likes, 1 Comments – Le garden-The Salad Company🇮🇳 (@legarden.co) on Instagram: “Cheesecake! The perks of being on a keto! 😍 Ctc: https://m.scootsy.com/le-gardenthe-salad-company-…”

So now what are your plans for the expansion of Le Garden? 

My current goal is to build a steady customer base. And since Le Garden is in that growing expansion phase, I need a few people in my team. I am open to having anyone who seeks employment on board. And recently, a few ladies have contacted me for it. Most of them happen to be in mid 40s and shared that the reason they wish to work is because they feel stranded at home. But since they can’t commute, they’re handling marketing and logistics for me.

Veg meal with cheese, garlic and celery dip dressings. Artist: @shenaz.haveliwala Ctc: legarden.co@gmail.com Food:Microgreen meal 1 box per in person. Free home delivery for order above Rs 500. Tag: #legarden #lagarden #salad #colour #veggies #fresh #freshfood #instafood #mumbaifood #healthy #tasty #healthyfood #http://mumbaimirror.indiatimes.com/others/health-lifestyle//amp_articleshow/39183951.cms #cheese #garlic #oliveoil #celery #nomnom #yum #healthfreak #cleaneating #takecare #salads #veggie #healthfood #tastegood #trellingmumbai

28 Likes, 6 Comments – Le garden-The Salad Company🇮🇳 (@legarden.co) on Instagram: “Veg meal with cheese, garlic and celery dip dressings. Artist: @shenaz.haveliwala Ctc:…”

That is you contributing to women’s empowerment. Speaking of which, your mother, too, is involved in your work. Let’s not bid adieu without talking about that constant pillar of support!

Oh yes, she is a big part of all my ventures. As I shared with you, whenever I think about her and my family, I find myself to be really lucky. My dad plans a holiday abroad every year for me to take a break, and he is always actively connecting with doctor in US and Europe. And my mum is my true strength, she thinks we are blessed, and has always told me that I can achieve anything.

First published on Mar 2, 2018.