The Spoonie Collective: 2018
The weather outside in Lincoln, Vermont was a chilly 36 degrees, but though there was snow on the ground and a brisk wind in the air, the atmosphere inside the Spoonie Collective was one of warmth. Beginning on February 15th, close to twenty-five individuals came together for the 2nd chronic illness retreat of its kind, organized once again in partnership between Suffering the Silence and Zeno Mountain Farm, a program that works, “to create lifelong friendships among people with and without disabilities and other marginalized communities,” as described by Zeno’s co-director, Peter Halby.
The goal of this year’s event, as outlined on the Suffering the Silence website, was to, “unite around education, awareness, restoration, and community.” The hope was to once again translate the support and understanding found in the online chronic illness community into an opportunity for impactful, in-person interactions.
Allie Cashel, president of Suffering the Silence and a chronic Lyme Disease sufferer herself, knew almost immediately after the conclusion of last year’s inaugural retreat that the event would be repeated. “I think I knew from day one of the first year that we would be back again. I’d never been in such a supportive, but also such an energizing environment.”
When asked to describe how this year’s retreat differed from the previous year, Allie noted that there was an overall shift in the tone of the event. “[It was] lighter this year than it was last year...the focus of conversations this year trended more towards living with illness rather than being limited by illness.” Put simply, there were, “more laughs, fewer tears.”
What also changed from last year was the makeup of the group of individuals that came together to participate. Once again, this year’s attendees were a diverse group. The grand total was twenty-three, with twelve repeat attendees returning from last year and eleven new faces joining the group. Some only had to make an hour long journey while others traveled from as far as D.C. and California. The individuals also represented a variety of chronic illnesses, including fibromyalgia, Lyme Disease, and Dysautonomia, among many others. But they all had one thing in common: the desire to connect with their fellow spoonies and discover the healing power of community.
One such attendee was Ariela Paulsen, who lives with Ehler Danlos Syndrome, Mast Cell Activation Disorder, and Postural Orthostatic Tachycardia Syndrome (POTS) and was a newbie to the Spoonie Collective. “I had no clue what to expect, but felt the need for a community. I was sick of people not understanding me, and wanted to be surrounded by those who get it.”
Justin, who lives with Type 1 Diabetes, Hypothyroidism, and Celiac Disease, was another new attendee who made the trip from Hartford, CT. “I wanted to be with a supportive community...to learn to talk about my chronic illness in a safe space and to hear about the experiences of other people living with chronic illness.”
Erin Williams, a young woman living with Fibromyalgia, was an attendee from last year who made the decision to return. “I came back because I wanted to be surrounded by the same sense of compassion I felt last year….I was hoping to reconnect with my spoonie and Zeno family and to feel that same sense of recognition and respect I felt last year. And I did!”
Over the course of the five days, Ariela, Justin, Erin, and all their fellow spoonies came together to experience everything the retreat had to offer. Each morning began with an optional yoga practice and every evening ended with a group activity, such as the screening of Unrest, a documentary spotlighting Chronic Fatigue Syndrome. The focus of the workshops throughout the day were varied as well, ranging from meditation to art and storytelling. While some were centered on wellness, others served as an outlet for creativity, including writing self-to-illness letters and working on a group tapestry. However, each was expressly developed with the goal of creating the space for discussing the shared experiences of chronic illness in mind.
For Ariela, her favorite activities were those led by Dr. Jeff Wulfman, a Family Medicine Practitioner and retreat leader from last year who returned once again to share his expertise. “Jeff's activities affected me really viscerally, and helped me release emotions I'd been holding in for years.”
On the other hand, Rachel Voorhees, another new attendee, most enjoyed the letter writing workshop. “Writing letters to and from my illness was powerful for me. I didn't realize that I had so much to say and it allowed me to find compassion for myself and my body.”
Justin especially liked how intense activities were interspersed with more relaxing options and the plentiful amount of downtime. “I appreciated that we alternated between doing somewhat serious workshops and things just for fun, like the sauna...The workshops were great, but they could be a little intense, so having the time to do yoga and relax the rest of the time made for a perfect balance.”
Once again, mealtimes were a high point of the day for all. Food can often be a source of anxiety for those living with chronic illness, but the staff’s ability to accommodate a variety of dietary restrictions helped to put the attendees at ease and allow them to just enjoy connecting with others around food. “Eating is stressful for me, so having someone prepare my food, and eating alongside other people on weird diets, felt really supportive,” Ariela shared. “Dietary issues were normalized beautifully.”
Another highlight of the long weekend, as with last year, was the evening of storytelling that was held at Tandem on Sunday night. The event, entitled Life, Illness & Identity, served as the culmination of the retreat and provided the opportunity for attendees to break their own silence and share their stories, some for the very first time. “It was so liberating!” Ariela exclaimed. “I've felt like hiding in shadows most of my life, so just being heard was an amazing change.”
Justin shared that he was particularly nervous leading up to the storytelling event. “Although I speak in front of groups on a daily basis as a teacher, I don’t really speak about myself, and certainly not my experience of living with chronic illness. But everyone was great. They gave me really constructive notes and support. [So] when it came time to give my talk at the coffee shop, to my amazement I wasn’t nervous. It felt really good. And it felt amazing to do that with the other spoonies, supporting them and being supported by them.”
The stories shared were as varied and diverse as the people telling them. While Ariela’s focused on trying to accept that science can’t fix her, Justin spoke of his struggle with episodes of low blood sugar and how he’s learned to rely on other people to help him through them.
“Our time at Zeno can feel really insular, almost like this safe bubble, and I love that we get to pop that bubble a bit at the end of the retreat and bring our openness and vulnerability to a larger audience,” Allie reflected.
However, as empowering as the storytelling portion of the retreat was, most of the attendees would agree that the best part of the weekend was the opportunity to connect and spend time with their fellow spoonies, a chance they don’t often have on a daily basis. “I felt deeply heard and understood. I could express difficult things without the conversation dying or getting awkward, without someone trying to fix me,” Ariela shared. “ I felt validated in a way I never had before.”
“Being at the retreat with fellow spoonies means being in a space with people who understand me in a way that few other people do, “Erin said. “From my fellow spoonies, I feel genuine empathy and I feel respected wholeheartedly. That sense of community is something I carry with me throughout the year.
And it is the supportive environment fostered by the Spoonie Collective that has many already looking forward to next year’s retreat, tentatively scheduled for February 2019.
As for this year, at the end of the five days, a short break from their daily lives, attendees left feeling refreshed and with a new sense of empowerment and possible hope.
“[The retreat] was a time and place to truly relax and practice self-care,” Ariela said. “A weekend surrounded by illness that left me feeling incredibly alive.”