I recently went to the “Survive and Thrive” program at Camp Nejeda. I just went for the day on Saturday, although this program is a weekend diabetes camp experience for adults with T1D. It was an all-around magical day for me, but the pinnacle of the day was the Lived Experience session with Marina Tsaplina of The 'Betes Organization.
I’d been wanting to meet Marina ever since we had her here for a live interview in 2014. It’s hard for me to describe what she DOES, but it is an emotional experience that will resonate with you long after you see it.
So here’s the space. I was front row center for this. Imagine it packed with type 1 diabetics, from the fairly recently diagnosed to me, T1D for 49 years. There’s Marina, walking the entire center aisle, barely able to hold a cardboard box, struggling mightily with each step, stumbling, falling, writhing to get control of the box, as the weight of the box seems so great. Immediately I find myself torn between wanting to jump up and help her and at the same time scanning the room for the nearest exits. As the performance unfolds, I’m cycling through the most painful memories of my diabetes journey, from the anger and betrayal I felt on my dx day (gee, thought I’d made progress on that one) to the shame and anger when my mom asked me, “do you have to wear that thing in plain sight?” (my pump) to a recent doctor visit where the endo is looking at my chart and saying “ummm, these kidney numbers…” and I’m looking away, thinking “GET ME OUT OF HERE” “STOP TALKING” “I DON’T WANT TO TALK ABOUT THAT”. Marina’s puppet is stuck on her neck and I’m thinking “GET THIS THING OFF OF ME”. The waves of sorrow crashing around me. Marina and The 'Betes begin to sing “Oh, you’re going to carry that weight, carry that weight a long time” (Beatles song). They keep singing until the entire room is singing along with them. We’re all in this together, we’re all helping each other here.
When it was over I felt a profound vulnerability, and a deep desire to be with my diabetes “peeps”. We broke into small groups to share our thoughts. All reactions were recognized as valid and “okay”. We gathered back together and a number of folks shared their experience with the entire group.
This is a powerful experience that I urge everyone not to miss if you have the opportunity. She has a variety of workshops for all age levels. Please check out the website here, and support this unique important work.
Making peace, at least a truce with diabetes, for me, is required to live well. It seems I only have enough energy to deal with all the functional regimen that diabetes requires and adding emotional diabetes turmoil is just too much. Solving the emotional burden, even temporarily, is victory to me.
Marina’s presentation and the therapy it delivers sounds effective and interesting. Thank you for the report.
What a great photo of you two. Very photogenic. I don’t understand the sorrow you feel concerning your diabetes journey. Who are you angry with? Who betrayed you? I will have to make progress on thinking the way you do, lol. I still love you which I hope allows me to tease you a bit. I guess I have hidden my sorrows away. Bill Frisell ~ You've Got To Hide Your Love Away - YouTube
Marie,
I too greatly valued meeting you, after so much time online.
To know that our artistic work is having this impact is what drives me forward. On the very difficult ( and slightly insane) path of forming an organization from scratch and building a body of work that is part of a new and emerging field (the Medical Humanities)… your words are a light and a guide post: we must keep going, moving forward, to bring our work into its fullest form.
This past Friday, our work was accepted into The Penn State College of Medicine Medical Humanities Scholars Colloquium- this will greatly help us build a research framework around our creative work, in order to understand what is happening behaviorally… and so that I may have an actual answer to “what does the BETES work DO?”
Thank you so much for taking the time to write this, and share it with the world… and with me. it is a great gift to receive these words. Thank you.
well look who I brought out of hiding. and getting the bonus of a Mark-chosen fantastic music video. remember when we used to do that all the time??? Mark is actually a long time member here who very much helped me w my diagnosis anniversary meltdowns. I used to have a complete breakdown every year. He made me see I don’t have to do that. I still am very angry about not being told I had diabetes by either my parents or my doctor before I showed up at the hospital. maybe betrayal isn’t the right word. but anger certainly is.
gosh Mark, you would love Marina. Marina, remember when we were sitting on the bench outside and I was telling you about the quilt I made for DHF that will be on display at the Friends for Life conference this summer? When you look at it, you’ll find a tiny embellishment of a whale. I put that on there for Mark. one of the little hidden messages on it, that’s one reason I think it has great power.
Marie,
Thank you for sharing such a beautiful post. Your reflection inspires me! I hope to attend next year and also to meet very soon @MarinaTheBetes!
I hope you don’t mind the Sunday Member Story Share this week. I am excited to share your story and the awesomeness of The Betes at Camp Nejeda!
Some days we thrive…some days it’s survive. Oh Betes!!!
hugs xoxox
