From Ahmedabad, India, 25 year old Jazz Sethi has ‘danced with type 1 diabetes’ since the start of 2009. In this Diaview, Jazz shares about her life passion as a dancer and how she has choreographed it into her life with this condition – taking extra steps in recent years to reach out to others through her start-up called D1abesties.
1. You are someone who clearly has one distinctive passion which is in dance! Firstly, can you share with us an insight into that: the types of dance you do, when you first started dancing – what you enjoy the most about it!
Jazz: “I began dancing when I was 5 years old. I remember walking into my first dance class and being mesmerised by the energy, entranced with the music and guided by the rhythm. My body almost instinctively began moving, and that’s when I knew this was something I was going to love. I began training ever since. Later, I began teaching at the same school I learnt in. I went on ahead and trained at the Broadway Dance Center in New York and further honed my skill with my performance studies diploma from Academia Europae di Firenze. I am also trained and still training in Kathak (an Indian Classical Dance form). My main form is Contemporary with Indian classical influence. But I enjoy street forms and of course, Bollywood! I also direct plays and musicals with children and really like to explore the dichotomy of stage and storytelling. I have performed over 200 professional shows all over the world and directed over 20 children’s plays. I absolutely love how dance is universal – and can tell stories without words.”
2. After you were diagnosed with type 1 diabetes, did you have any fears or concerns regarding you love for dance and this condition? What was your initial reaction to diagnosis?
“It was very clear, that when I was diagnosed, I thought I would have to stop dancing. I was young, and naive, and I associated Type 1 Diabetes as being ’sick’ and being ’sick’ meant having to rest. And that thought truly terrified me. Luckily, very quickly I learnt that not to be the case. I realised that my life would not change, though things would definitely be different. I would have to add on a few extra steps in my routine, and that was something I could get on board with. There was a lot of trial error initially, with rehearsals leading to either major highs or crashing lows. It took a while, but I was fortunate enough to have a wonderful dance family that helped me figure it out and would be there in case something went wrong. The challenging part was studying dance abroad while being completely alone – but thats also the part that made me confident enough to take care of myself, while still doing what I love the most.”
3. How did your family respond to your diagnosis, it must have been as big (or bigger) a shock for them as it was for you? And as for your dancing life, what were your families initial responses to it and have you seen them grow with you in this journey?
“My father is a professional athlete, and the first thing he told me when I was diagnosed was – “Wasim Akram has Type 1 Diabetes too, and he is a world class athlete”. Somewhere that provided a lot of instant comfort. It was definitely a shock for all of us, but we also grew together. My family and friends have been incredibly supportive, not only of my dancing but dancing with diabetes. There was hesitation in the beginning, but I think as I grew older and more comfortable and confident with my diabetes, everything fell into place. Extremely grateful for their support.”
4. Regarding diabetes care in India, is it fair to say it is a beautiful country but with such a large population, there are some great extremes: on one hand there is the glitz and glamour, the millionaires of the Bollywood world for instance, on the other there is a vast levels of poverty across all populated cities and rural areas. What would you say are some of the biggest challenges that exist for medical, and particularly diabetes, care across the provinces of India?
“Absolutely. We live in a beautiful country, with great extremes. When it comes to diabetes, or health in general – we have the best and the worst. We have some of the best private hospitals in the world, and we also have village doctors who don’t know anything about ’scientific medicine’. The biggest struggle is also literacy and awareness. When you are not aware of the facts or the science, you fall prey to any alternative treatment. 70% of our population resides in the interior villages of the country, where access to the first qualified GP may be 100 km away. So now, its not just the cost of the GP, but also the travel! Then, you need a fridge to store insulin, and that’s a huge cost. Then, you need electricity to run the fridge. It piles up. Then, comes the point of having almost 0 insurance policy which covers insulin and other diabetes supplies. And then, we have cases of misdiagnosis, wrong treatment, cost of treatment, acceptance of treatment, and education. This extreme is the hardest to deal with and is unfortunately a startling reality.
5. There is a large misconception into the mindsets of many families in lower income settings, out of love and concern for their loved ones, of taking less insulin and even replacing it with herbal remedies. Have you ever encountered these views, and what steps are being implemented to better support education for families with diabetes?
“I have always said – that its not enough just to give a family insulin, unless you educate them about it. I have personally interacted with so many families who have stigma and taboo about the idea of insulin… In my opinion, this happens because ‘insulin’ not only in India, but across the world is deemed as a punishment. Since type 2 is the higher percentage, I have often found HCP’s telling people with type 2 diabetes that if you don’t take care, we will have to put you on insulin. This reputation then sticks on and insulin is seen as the enemy. I have found families trying every alternative approach – from yoga, to prayers, to Ayurveda to chants.. The biggest thing we have to do and are trying to do, is normalise insulin. Our biggest ally is awareness – and that’s the mission – to make people aware that for T1D insulin is equivalent to oxygen.”
6. Diabesties has been growing both with its social media presence and more essentially so, with its action for communities. We have seen a few local organisations in recent years start to grow more and more across India, is this a new wave of patient empowerment in diabetes care occurring? And can you share about some of the work of Diabesties?
I think this is the new wave of patient advocacy and empowerment. People now are seeing support groups as places to learn and grow rather than people who are ‘ill’ and need ’support’. There are some fab organisations across the country run by some dear friends who are reaching out in unique ways.. Diabesties’ mission is to make those with T1D feel heard, supported, understood and celebrated. And we try doing this with several projects and activities.
Sharing with you a couple of our projects which are active or have been released into the community:
1. DiaMeet: Our peer support parties – where T1D’s and their families celebrate living with Diabetes with games, conversations and lots of dancing! Questions are answered from lived experiences and its a beautiful showcase of support and camaraderie. (https://www. youtube.com/watch?v= 9ztceNMYkRw)
2. DTour: a National School programme focused on spreading awareness about Diabetes, the difference in the types, and discuss stigmas and taboos.
3. One Drive: Sugar-testing camp in schools (https://www.youtube.com/ watch?v=GMw68tKjelQ&t=6s)
4. Mishti: Pledge Insulin, Gift A Life (https://www.youtube.com/ watch?v=IYHtJwHAvUI)
5. Kiran: Project Kiran understands the importance of diabetes education being fundamental to ones quality of life.. We also understand that not all children learn alike. KIRAN has several modules, games, instructions, manuals and lesson plans to cater to every Childs learning needs and ensure quality education.
6. T1D Comic: To launch soon
7. DiaBIKE: a community project to explore your cities, spread awareness about T1D and also understand the importance exercise in diabetes management.
8. Language Matters: A guide to sensitize HCPs and other caregivers with regards communication in T1D. In collaboration with NHS UK (https://www.d1abesties.com/ images/uploads/guide.pdf)
We are also collaborating with several patient groups to reach out further and learn from each other. Our collaborations are also with HCP’s to create projects that can reach out to all their communities.
7. Back to your story and dance… you described recently your journey with type 1 diabetes been like a ‘choreography’ which is a wonderful concept. Can you explain to us a little bit about your dance life connecting with your daily life with diabetes, and how the two align together for you?
When I choreography, I think about a lot of elements – the lights, the stage, the space, the movement, the time, the music, the performers, the props, the backdrop, the sync, the expressions, the audience and the intention. Thats what T1D is like – its thinking about a lot of things, but doing it with grace. Its the 2 am rehearsals, the perfecting of a spin, the complicated floor work, the high of a leap, the picture perfect pose, the reworking of a step and so on. Choreography for me, has always been a never ending process and journey. Its never ‘finished’. It ends in performances, but the story and the message lives on forever.
8. Finally, what is your personal message to share to others around the world living with this condition?
Don’t Stop!!! I honestly believe that Type 1 is about the small victories. not the big end game.. Bringing your A1c down 1 point is a huge victory in itself. Checking RBS twice a day is a huge victoy. Focus on the small victories to achieve the big one… Be fearless in the pursuit of what makes you heart jump, and remember that T1D is not going to cage you in anyway.. I found my passion in dance, and my purpose in Diabetes, and Diabesties was when my passion met my purpose… Do not underestimate the power of community… make friends who can see what is invisible to most. As lastly, make you ‘mess’ your ‘message’ and live happily and bolus regularly 🙂
