Our episodes aired in May are great examples of that concept of slow but sure realization … when it dawns on you!
For three sisters coming together regularly to catch up over loom knitting … for a young artist coming to the understanding that her health issues were real, and not her fault …
A little bit of quiet thinking has resulted in two wonderful examples of creatively-based activism that is truly helping others to cope with their daily lives.
Once, there were three Mata sisters who loved getting together to loom knit and catch up on their busy lives. Then in 2009, Juana Mata was diagnosed with lupus. The family found they knew little about this disease — what it was, how to treat it, how to help and support their sister.
At their loom knitting get-togethers, they found that talking and working their fingers was therapeutic in so many ways. And they agreed that lupus was a condition largely misunderstood, and that it needed awareness-raising to fund research for a cure. Out of that little circle was born Looms for Lupus, a non-profit providing resources and awareness to those affected by lupus, fibromyalgia, and other co-morbid conditions — with a focus on the needs of minorities and families of color.
We talked with two of the lively Mata sisters, Juana and Estela, as they explained how Looms for Lupus forms partnerships with similar agencies and patient care facilities to provide support and resources. With a mission of “Knitting a Community of Hope”, the organization provides bilingual in-person support groups and incorporates hands-on workshops that utilize loom knitting, mindfulness, meditation, and other stress-relief techniques. They also run a Spanish Facebook Live Support Group once a month.
“During our support group, one of the things we teach and incorporate is patient empowerment,” Estela explained. “My sister’s alive today because she used her voice. Because she said, ‘There is something wrong with me, these are my symptoms, this is how I feel, and I’m not leaving.’ That is huge.”
So huge. And how inspiring it was to hear their story, and to see how, once again, women getting together to pursue a shared creative interest can … help change the world! Grab your tea and come listen to Juana and Estela!
Across the pond we went to talk to Mimi Butlin, whose litany of health issues — Ehlers-Danlos syndrome, fibromyalgia, postural orthostatic tachycardia syndrome (POTS), and ME/CFS — can be traced back to contracting viral meningitis 9 years ago, while a university student.
In 2018, she started the Instagram account @CantGoOut_ImSick, a platform where she posted drawings of what living with illness was like — including portraits of other chronically ill women who had gone through similar experiences.
Recently, she collaborated with disability charity Leonard Cheshire to create the #DisabledLooksLikeMe campaign to raise awareness of invisible disabilities. Disabled influencers and creatives stepped up, and celebrities such as Selma Blair and Sinead Burke are wearing her t-shirts and supporting the campaign on social media. Her success, however, has been hard-won For years, Mimi felt completely alone — and convinced that she was responsible for her pain. “I thought doctors could cure everything,” she says. “And when they start to tell you that it’s in your head, or that there’s nothing really wrong with you, I think you then start to believe that as well. Because if they’re saying this, then it must be true. And then you realize … actually, it’s not true.” Even when she was officially diagnosed with medical PTSD, she remembers thinking … “this actually makes so much sense. But at the time, you don’t feel like you’re deserving of having PTSD. You feel that happens after something really tragic and dramatic. And you don’t associate your illness with that, even though your whole life has been uprooted.”
There is so much about validation in this episode… don’t miss some very wise words from Mimi!
As so many of our interview subjects have brought home to the / UP / audience: Never stop believing in yourself and what you’re feeling. If you feel you need help to figure it all out, never stop seeking that diagnosis and validation.