We have all known her for essaying the role of ‘Meera’ in the Marathi TV soap ‘Tuza Maaza Breakup’. Not just her character, but Ketaki Chitale – the actor who played the role, has made a lasting impression in the viewers’ minds and how!
Ketaki was just another girl born in the maximum city of Mumbai until she discovered her passion for performing arts and her acting skills. Within no time she went on to become a well-known face in the Marathi film and TV industry. Some of the remarkable roles she played were in the following TV soaps: 'Ambat Goad' as Aboli; 'Lagori-Maitri Returns' as Anushka; 'Tuzya Vaachun Karmena' as Surabhi; 'Ithech Taaka Tammbu' as Mallika and 'Saas Bina Sasural' as Dimple Sharma.
While she might be a successful actor now, she did not have it easy while growing up. Ketaki was diagnosed with Epilepsy at the age of 10. And even though the journey so far has been topsy-turvy, it has also been a gratifying one.
We caught up with Ketaki as she spoke her heart out about her fight with Epilepsy and about her new role as an ‘Epilepsy Warrior’ which she will play for a lifetime.
Here are the excerpts:
Q1) We all know ‘Ketaki Chitale’, the well-known actor of the Marathi film and television industry. Introduce us to the other, warrior side of yourself which we are slowly discovering.
Ketaki: I was diagnosed with Epilepsy at the age of 10. I apparently did showcase the symptoms before being diagnosed, but the research and medical know-how regarding Epilepsy in India was not as developed in the early 90's, thus the late diagnosis.
Epilepsy doesn't discriminate people, but people do. As a child, I was told that I have a disease which will go away after a medical course of 3 years. And since that never happened, I was told at the age of 13, that I have an incurable disease.
The medication had side-effects that the doctors never told me or my parents about. In short, along with taboo regarding epilepsy, there was negligence as well.
I became a slow learner, not that I wasn't intelligent, but developed ADHD among many other things like anxiety and depression. I was told that I have something negative in me and thus, had a childhood with a lot of self-doubt, which led to zero self-esteem and no self-worth.
Q2) How did you start coping up with Epilepsy and take charge of the situation?
Ketaki: I went into performing arts. Teaching dance at the age of 16 gave me the confidence I was looking for. I started sharing about my condition with my friends. I also started seeing a psychologist, who helped (and continues to help) me a lot with regards to self-worth and self-esteem. I finally started accepting Epilepsy.
Today, I am 31 years old. It has been 21 years since the diagnosis. I still continue to experience seizures.
I am an established actor today, but many-a-times, I wasn't cast due to the disorder. I have been rejected due to the disorder as well.
It took me 19 years since the diagnosis, to come out and openly speak about the disorder. I have now begun a movement to spread awareness regarding the disorder through social media platforms. I also encash my fame by uploading a video in my regional language (Marathi) so that people understand ‘Epilepsy’ is NOT a disease and only a neurological disorder.
I don't regret or complain about Epilepsy, because Epilepsy made me stronger.
Q3) When did you actively start the awareness initiative and how was the response? What were the challenges you faced during the course of time?
Ketaki: I started my initiative 2 years ago. The response is as one might expect, laden with some supporters and haters, but mostly there are supporters.
The challenges that I face are:
1. Lack of knowledge about Epilepsy, makes people talk utter nonsense:- I have been called ‘Vedi’ (Mentally challenged), ‘10th pass hi vatat nahi, sarkha ekach bolte’ (She keeps talking about the same thing, she doesn't even seem like someone who has completed her 10th standard schooling), ‘Tu bore aahes’ (You are boring), ‘Phaaltupana band kar’ (Stop this nonsense), ‘Tu aaj top chi Marathi actress jhaali astis jar hi phaaltugiri keli nastis tar’ (You would have been a top actress in Marathi industry had you not promoted such nonsense), ‘Epilepsy is not a subject to promote, you are hiding behind Epilepsy and trying to gain sympathy’, etc. In short, many personal insults are hurled at me on a daily basis by random strangers.
2. Social media is a double-edged sword:- Thanks to it, I have been able to connect with loads of people who either experience Epilepsy themselves or know someone who has it. There are so many who are teenagers and are simply lost, who come for guidance. But then there are a lot of trollers also out there.
3. Ignorance:- People ignore things as sensitive as Epilepsy. Many don't even want to know about it.
4. Myths:- There are so many myths around Epilepsy. It is a lot of hard work that goes in undoing these myths and telling people that the traditional methods do not actually work.
5. Denial:- Many people live in denial. They simply don't want to accept that they have Epilepsy.
6. Doctors:- Doctors terrorize patients (as I have mentioned in my personal story). They make ‘Persons With Epilepsy’ (PWE) believe that they are weak and not fit to live in the society and if they do something, they might experience a seizure.
7. Self-pity:- The most difficult, or rather the toughest challenge that I face on a daily basis is self-pity. It is human psychology to cry, complain, and ask "why me?" Urging PWEs to Accept Epilepsy and not indulge in self-pity is the most difficult challenge.
Q4) There seems a long way before the perception of people would start changing toward this disorder. What do you think?
Ketaki: I talk to many individuals from different countries and continents regarding Epilepsy, and it is sad that the stigma, myths, discrimination associated with it are the same all over the world. I feel it will take at a good two generations or more to remove the stigma and be completely acceptable towards it.
Q5) How has the industry supported your initiative?
Ketaki: I wouldn't know as I haven't approached anyone for extending their support. But when I experience a seizure on set, each and every single person supports me.
Q6) Performing arts has helped you immensely in coping up with Epilepsy and dealing with it. What would be your advice to the families of children with Epilepsy so that they can help the child find that one thing which could go on to be their coping mechanism?
Ketaki: First and foremost, pain is always there. But it is in our hands whether to suffer or not. I don't suffer from Epilepsy. I have Epilepsy. And I always encourage people not to use the word "suffer."
It is necessary for children with Epilepsy to have their parents by their side at every stage of their lives. To help the parents deal with their children who are diagnosed with Epilepsy, I have prepared some videos which are up on my YouTube channel. The videos are easy to comprehend and are simple to follow.
The following are the links-
Q7) What are your future plans regarding the awareness of epilepsy?
Ketaki: Me, along with my partner - Mr. Rohit Bhagwat, are working towards the end goal of making the life of PWEs easier.
1. There is absolutely no insurance policy for Epilepsy. Rohit and I have approached the IRDA, and IRDA is already developing a new product for PWEs.
2. Epilepsy is a disorder, a disability: Like visual impairment, autism, etc. Epilepsy is a disability. But because under the disability law, Epilepsy is not categorized as a disorder, there are absolutely no benefits for PWEs. Benefits such as:- half an hour extra in a normal exam, especially for competitive examinations, employment guarantee (many people are fired from their jobs because they have Epilepsy) can really help PWEs. Rohit and I have been meeting with eminent personalities such as retired associate BARC head Dr. Yakhmi, who is on board with us on our mission to get Epilepsy categorized as a ‘Disability’ in India. We recently met Dr. Anil Kakodkar, as well.
3. Since we are not an NGO, we are funding our mission ourselves as of now. We are dipping into savings and also selling Epilepsy merchandise online to fund the initiative. We are on a mission to get Epilepsy categorized as a ‘Disability’ in India. And if we are successful, then India might become the first country in the world to bag this achievement as many nations are fighting for the same thing.
With that, Ketaki signs off the interview with her brave and smiling face. We at Reacho, wish her all the best for her future endeavors.
You can find her initiative on Facebook, Twitter and Instagram by the name @acceptepilepsy
Images: actor's own