Getting all crafty when it comes to diabetes is something our D-Community has gotten quite good at through the years. With all the med supplies we go through, we have plenty of materials at our fingertips (pun!)
Now there's a relatively new organization that focuses on D-crafts as one of its creative and fun education programs. It's The Betes Organization, founded by Marina Tsaplina, a longtime type 1 PWD (person with diabetes) diagnosed at the very young age of two. When she's not advocating about diabetes, this 20-something New Yorker is a professional performer, on stage doing a range of activities from puppetry, magic, improvisation, and even "physical theater" dressed up like a clown! Not to mention she's currently training in acrobatics. If you don't believe us, just take a look at this video proof of what Marina has been up to.
The name Betes of course comes from our condition having French roots, with "bete" meaning "beast"; Marina says they aim to empower people living with the "chronic beast" that is diabetes. They're using theater, performing arts and even crafts to make diabetes visible. We first heard about them over the summer via this great interview on TuDiabetes in which she talks about how she sees performing arts playing a bigger part in healthcare and humanizing medicine, since she says "the art of medicine" is missing "the art part."
We found some time to connect with Marina recently for a Q&A that fits perfectly into our Amazing Advocates series here at the 'Mine.
Take it away, Marina. And no need to break a leg here!
DM) First of all, please introducd yourself and your diabetes...
MT) I live in NYC, am a performing artist who is applying the tools of physical theatre, clown, puppetry, magic, improvisation and authentic engagement as a modality for addressing the emotional component of chronic illness care.
I was diagnosed when I was two years old in the former Soviet Union. My family immigrated to the United States (NYC) when I was 5, in large part due to the inadequacy of treatment and supplies available in Russia.
One theory that exists about the origin of my 'betes is the building that we lived in in Moscow stood along the river under the smokepipes of an electricity-producing factory. "We had chemicals raining down on our heads from the smoke" (my mother's words.)
My mother brought me to the emergency room because I stopped being able to walk, along with the other typical pre-diagnosis symptoms. The head nurse, seeing the address we lived in, said "there is a high level of rare diseases specifically from this address as compared to the rest of the city, including (type 1) diabetes." I was diagnosed an hour later.
This sets a very ironic precedent for where I am today and how I have come to be where I am.
You professionally: clown, puppeteer, lover of the performing arts... how'd you get into all of this?
It's been a very exciting journey. I knew I was an artist from a very young age, but I initially went to school for geography. Then I took a six-month break and backpacked through India at age 18, where there were odd traces and hints pointing me to puppetry (like me meeting a famous retired Danish puppeteer in Kerala and her telling me "You can do what I do. You have it."). However, at that time I never imagined myself on stage and was planning to study animation, stop-motion and film-making in Chicago.
Through my study of animation I started realizing that the very solitary work of an animator is not for me, and I started looking at puppetry books in the library. I discovered stage puppetry and realized that I may have been in the wrong medium— and that the Danish puppeteer may have been right! I then received a grant to study puppetry in Berlin and spent another six months abroad. That is where I discovered that the real art that interests me is performing, and puppetry is just one of the mediums which I choose to express that.
How does diabetes play into the physical demands of being an entertainer and puppeteer?
Going low as a performer is simply not an option. You can't think straight, can't see right, and its obviously incredibly dangerous. I remember recently reading a Bret Michaels interview where he said how for the first time in his rockstar life, his blood sugar plummeted moments before he had to go on stage and he had to take the time for it to raise, apologizing to his fans as they waited.
I wish we didn't feel the need to apologize, though I understand it and too often catch myself doing the same. We apologize for the "interference" that diabetes puts into "normal" life. However, THIS IS MY NORMAL -- and my normal has interference! But rather than holding a negative view, I've come to view it as my life's own rhythm, and 'betes and its demands are a part of that beat (The beats of the 'Betes beast!)
So how would you describe your 'diabetes normal' to your audiences or others in your life?
Modern medicine has created this bizarre ability for us to be living, breathing, smiling and laughing alongside a once fatal disease. Sanity is being honest to that insane reality.
In more direct terms, I call it my health boundaries. If you want my talent as a performer, you are going to have to accept the conditions and requirements of my life -- and sometimes, that includes pressing the pause button. Because I'm on a different contract with life then someone who has a working pancreas.
Any war stories to share?
A few weeks ago I had a nightlife corporate gig where all day I had felt very poorly -- insulin resistance was high all day, and my blood sugar was running in the mid 200's. My body was exhausted, but I had to be in my full energy and capacity and be fully physically present, engaged, and "on."
I had to be honest to it. I conserved my energy in every possible moment. I didn't have any coffee (spikes my sugar), cut out all carbs, got my blood sugar to stabilize, and breathed laying on my back for 35 minutes.
I posted on Facebook about it, and the next day the agent who hired me commented, 'I had no idea! You were great!"
Of course the agent had no idea by looking at me, and thats why it's doubly important that I have my own health boundaries firmly defined for myself, and keep them in place in various circumstances. If I were to develop an ongoing working relationship with the agent, diabetes would invariably be a part of the conversation.
Overall, the key is being prepared. A good recent tip I got is: I haven't finished unpacking from a gig until I have repacked my low blood sugar reserves. That's a nifty life-hack I'm incorporating.
So how did you come up with the idea for The Betes Org?
As a performing artist, I have always sensed that the inherent power of theater was limited by its confinement to the stage. My goal is to carve a new space for the power of theatre within the medical industrial complex in order to drive a cultural shift towards a whole-person approach to healthcare and education.
In the Spring of 2013, I suffered a sudden deterioration in health triggered by living on a boat floating in an industrial dump site -- one of the most polluted bodies of water in the northeast. I made the connection between personal and public health, and its relationship to environmental degradation. (Please see this link on diabetes and climate change as a start.)
My vulnerability and the fragility of my inner ecosystem led me to reflect on my relationship to my diabetes and how it had been treated as a machine. Health is not separate from the environment and our emotional life is not separate from physical illness. Making these connections opened a floodgate holding back 25 years of neglect of the emotional impact of my condition. This new awareness tied into my work as a performing artist and my craft's intrinsic ability to reconnect us to bottled-up emotions. The Betes idea was born.
In December 2013 I traveled -- with puppet on hand -- to the World Diabetes Congress to see if the personal connection I had made had a place within the larger dialogue on healthcare. I sat through five days of fascinating, largely empirically driven science and research. On the final day, Jean-Philippe Assal, professor and pioneer of Medicine and Therapeutic Education, posed this question in the opening slide of his life achievement award presentation:
"What is missing from our understanding of healthcare as a practice that exists at the crossroads of medicine, education, and psychology?"
His answer was the confirmation I sought: We need empathic creativity in healthcare to bridge the gap between patient and provider.
That was December 5th, 2013. My partner in the organization, Deborah Kaufmann and I, have decided that's the official founding date. I haven't looked back since.
What is the The Betes Org?
This new educational program combines performance and diabetes education in an effort to support and inspire brighter, healthier lives with diabetes. Basically, we are building a team of performers and workshop facilitators, in partnership with a network of healthcare providers, to lead people who have chronic conditions to empowerment, advocacy and emotional resilience.
What kind of workshops do you offer?
Our workshops use the tools of theater as a way to access the emotional component of chronic beasts. They are flexible in nature and can be held in healthcare settings, group therapy settings, support groups, diabetes camps, conferences, even living rooms. In healthcare settings, we work in partnership with a healthcare provider or team. We are interested in collaborating with forward-thinking researchers, neuroscientists, diabetes educators, psychologists, wellness coaches, and other providers to push our work forward to a new level of possibility and effectiveness.
We are seeking funding for a two-year pilot program to further develop our workshops and lead a study on the impact of the work. Once funding has been secured we will be able to implement a training program to grow our team.
Twot new programs are called Marry The Beast and Marry The Care. The former is a personalized, life-affirming and empowering service for a person with a chronic beast(s) who is ready to make a vow of commitment to their beast and simultaneously their own life and health. The latter is a service for healthcare providers and health facilities. that's a symbolic celebration and ritual for a healthcare team and/or facility to revisit their Hippocratic Oath.
Both of these services are led by an award-winning wedding officiant, incorporate magic and puppetry, and provide a transformative, celebratory honoring of a commitment to one's self or professional care practice.
And what about this 'Make Your Own Diabetes' program?
Make Your Own Betes is part of the workshops we lead. In our work we keep it very simple: a glove acts as a metaphoric embodiment and externalization of an invisible condition. It is making the invisible visible, allowing a person to speak and relate publicly to it. We have done this work with young children, teens, and adults across the diabetes spectrum, and all have been powerful experiences.
I quote Emily Coles, who hosted and participated in the workshop:
"That truly was an amazing experience yesterday! Thank YOU!" After the event one of my friends who attended it said to me, "I've never seen you so serious! Were you faking it?" and I said, "Not at all! I was totally into it, and it really was as deep-feeling as I said in the event!" It was a little scary to "go there" in front of an audience, and I obviously didn't manage to stay there for more than a few minutes, but those few minutes, and the difficulty staying present, left me with a LOT of food for thought."
The TuDiabetes online workshop was a simple introductory taste of the transformative power of our work.
Sounds a bit like Diabetes Art Day... what impact do you see these arts and crafts efforts having on those of us with diabetes or other health conditions?
I think overall art has a huge role to play in our society, whether in healthcare or otherwise. I love Diabetes Art Day. It's a beautiful initiative. However, what we are offering is very different. We are working to create the space for people to connect to themselves and each other and find their own power. This is a vital step for anyone to become -- in the industry's words -- an "activated patient."
There is an emerging Arts in Healthcare industry for a reason: the evidence-based medical sciences that our healthcare systems' services are based on are incapable of addressing this personal trajectory of integration.
Art, drama and narrative-based practices must fill this gap. There is a deep unmet need for secondary services that aid a patient's understanding of themselves in relationship to their life and the disease that has entered it. This process is an essential step for better self-care, in order to achieve not only "better patient outcomes," but quite simply, to be happier human beings. This is the need that The Betes Organization seeks to fulfill.
What do you get personally from doing this?
Artistic satisfaction and gratitude that I have something to offer to a larger community that has the potential to make a real positive impact on people's lives.
Great to hear about The Betes and everything you've got going on, Marina! We'll look forward to seeing the new site on World Diabetes Day, and definitely will be watching your programs and initiatives develop.