Today I bring to you, a conversation which is not only inspiring and insightful but also deeply moving. It is a story of courage and self discovery. It is a story of someone very special – someone who can be as calm and fluid as a river and as fierce as a storm.
I first saw Madhura at the Vagina Monologues show. She was the first performer – clad in a saree, her calm yet powerful appearance stayed with me. I met her in person several months later at the Launch of Lead Like a Girl – there was excitement in the air since this was our first batch of fellows. Amidst all the excitement, there was Madhura, the photographer, calmly going about capturing precious moments. She wore her gentle smile that did not leave her even for a second. As we were going through introductions, after being persuaded, Madhura agreed to share her story very briefly. Her story took me by surprise! I would have never guessed that this beautiful young artist had survived two very serious health conditions – Steven Johnson Syndrome and Cancer. She shared this with utmost grace and equanimity. Her story as well as her demeanor evoked respect and fascination in me.
Couple of weeks passed by and one day, a unique self-portrait on Instagram caught my attention. It was a beautiful silhouette of a young woman, bathed in turmeric, with red veil covering her forehead as she tossed her head in air as if engulfed in a fiery flame. This picture resonated with me at a deep level – the flames, the emotions, surrender, victory and the purity. The intense colour of turmeric coupled with its timelessness and potency invoked multiple emotions in me, all at once. The red colour – its passion and energy made me feel as if I was in some way a part of this magical story. The post with the picture was as impactful as the image. It spoke about Madhura’s journey through a rare condition called Steven Johnson Syndrome – how she burnt from within, silently confronted the pain, accepted it, surrendered to it, finally befriended it and listened to it. From that space, she took ownership of healing herself. Home ground turmeric, high fat diet comprising of ghee and coconut oil aided her healing. She had learnt how to listen to her body. What is remarkable is that she had sensed cancer months before it was diagnosed. She says that it was her ability to sense and not just see that saved her life.
I know Madhura’s story will inspire and empower many who may be going through a tough phase right at this moment. There are subtle, yet powerful elements in her story which aren’t easy to explain but yet can be understood. More importantly, these elements are key to surviving and thriving when a serious disease surfaces.
When I reached out to Madhura with the request to share her story, she generously agreed.
We met in person and it was a surreal experience! I asked Madhura what helped her emerge victorious through an experience, which for me, was painful even to imagine. For those of us who believe in the concept of reincarnation, we think of death as a point of transition between lifetimes as we evolve and understand the phenomenon of life and what it is meant to teach us. Can you imagine these transitions happening within a single lifetime? Well such a journey is like learning fast-tracked – one needs the courage to show up for oneself, again and again, no matter what…and go on learning. That’s how I see Madhura’s journey!
What is beautiful about Madhura’s journey is the honesty with which she is willing to make herself vulnerable. Unlike the usual reaction to a disease when one is likely to feel like a victim, Madhura learnt the art of listening to the silent language of the diseases that surfaced as she navigated through her challenging journey. She learnt to pick up cues on how she has created these diseases at an emotional level, the discovery that she actually knew they were coming and that the way to overcome them was to embrace them, own them and participate in ones’ own healing. There are many stories of courage where those faced with disease have been brave through the situation but there aren’t many where someone learns a lesson from the disease, emerges as a better, stronger version of themselves and is willing to share this precious journey with others.
Steven Johnson Syndrome came to Madhura, laden with pain. Steven Johnson Syndrome or SJS as it is commonly known is a reaction to certain drugs. In Madhura’s case, SJS developed as a reaction to a prescribed medication. She was not warned about the possible side effects. She had too look up her symptoms to conclude that she had developed a far more severe version of SJS (called TENS – Toxic Epidermal Necrolysis). As a result of this reaction, she developed toxic burns equivalent to second degree burns. TENS caused her to burn inside out. Her trauma was for everyone to see because for years to come, she faced the world with scars on her skin which told the world how she felt from within each time someone saw her. Initially she was vulnerable without a choice and then she chose to be vulnerable. What she learnt from this life event was that it was okay to be vulnerable. It was okay to show the world how you feel. It was okay to accept that your journey is unique, very painful this moment and that you are still gathering the strength to deal with it. There are those who may distance themselves at this point because they aren’t ready to be a part of something as intense as this yet. There are those who would want to be a part of your journey because your story resonates with them at some level and they feel varied experiences makes life richer. Accept both perspectives with grace and keep marching on, “feeling” everything that comes your way because it is feeling that teaches you “how to listen” and see what is unseen and unheard. It teaches you how to understand your own “core”. You are the only authority on your own life. You are the only one who has lived with you each second of your existence and will do so forever. You are the only one who “knows what happened”. When you know what actually happened, you also know how to heal.
Healing did not come easy to Madhura. She has had her share of emotional set backs. It was after several years of breaking down, sometimes even in public, that her healing began. There were times when she shared her story so that her unique journey could help others while she healed herself. She was occasionally misunderstood for making herself vulnerable. However, she has now become more comfortable with being misunderstood or judged because she realizes that it is not always about her. Opinions are often based on an individuals’ own journey and the way they choose to see the world.
Yoga and her knowledge of dance aided with posture and pain management. Madhura could endure pain – sometimes it surprised doctors how she could tolerate so much at that young age. She attributes her endurance to the rigorous physical training she underwent at National Cadet Corps and her dance school.
Madhura had relearn many functions we take for granted – she relearnt how to stand, walk, breathe, chew her food even getting used to the decibel at which to speak. She still needs to actively work through her Post Traumatic Stress. She is undergoing audio therapy and using art in her process of healing.
Madhura shares her story because Steven Johnson Syndrome is so rare that even her hospital did not have experience with treating it. Her skin burnt and as it frayed there was nothing to envelope her body. All her hospital had was synthetic gowns. The hospital was not equipped to handle cases like these. They tried their best to treat the case like those of severe episodes of burn injuries. That is when she thought of what could help her – her Mom’s soft cotton dupattas came to rescue.
Madhura shares her story so that we can raise awareness around Steven Johnson Syndrome (SJS) also known as Toxic Epidermal Necrolysis TENs so that others get equipped to detect it. She urges everyone to take ownership of proactively asking and researching about side effects of individual drugs and the possible reaction when certain drugs are taken in combination.
Sometimes, the way to heal ourselves is to help others heal – to share our journeys , what we learnt and what helped us triumph.