• Emily Cashel

The Spoonie Collective: A Recap

The trip to the Spoonie Collective only took an hour, but for Jennifer Smith, it felt worlds away from the life she lives every day. Living with ankylosing spondylitis, sacroilitis and some other forms of arthritis, the chronic illness retreat was exactly what she needed. “I had been daydreaming about something like [it],” she said. “A chance to get away from my everyday life...a way to get some traction to move into a more positive space.”

Judging from the turnout, many other spoonies needed it, too. On February 8th, close to twenty spoonies arrived in Lincoln, Vermont for what promised to be an intensive, but highly supportive event. The retreat was the first of its kind for both Suffering the Silence and Zeno Mountain Farm, a program whose objective, as defined by co-director Peter Halby, is, “ to create lifelong friendships among people with and without disabilities and other marginalized communities.”

Previous to this retreat, Zeno had not reached out to the chronic illness community, but Halby says, “The more we discovered how people in this population tend to feel isolated...the more it seemed like a natural fit for Zeno.”

The goal of the event, as described by Allie Cashel, organizer, co founder of STS, and chronic Lyme Disease warrior, was to create a space where people could, “ new and powerful relationships, experience consistent empathy and find their voice, and understand the power of their story.” For Allie, it was important to take the support and understanding found in the online chronic illness community and translate it into an opportunity for in-person interactions.

Cara Gael, another attendee who lives with several chronic illnesses, including Ehlers-Danlos Syndrome and Fibromyalgia, agrees. “I wanted to go to the retreat because every time I've gotten to spend time with other people whose lives have been deeply affected by chronic illness has been so special and transformative...spending time in community is so, so important.”

“We talk so much about the power of storytelling, about the power of sharing our experiences with each other, but to see that play out in person was incredibly exciting and inspiring for us.” Allie added.

The activities developed for the five day retreat were created with this objective in mind. Attendees participated in group yoga practices, along with chronic illness centered workshops, creating the space for discussing the shared experiences of chronic illness. Jennifer recognized the power of these moments . “There was such a deep level of understanding and compassion from everyone, towards everyone,” she says. “I felt bolstered by everyone sharing resources, wisdom and hope with each other.”

Peter described how quickly attendees became comfortable with one another. “While this was a new group at Zeno...this collective bonded really quickly and I could tell how everyone felt a real sense of purpose and belonging.”

While some were focused on community, others centered on wellness, like Dr. Jeff Wulfman’s workshop on Complex Chronic Illness, or on creativity, like a group writing self-to-illness letters. Cara most enjoyed the art therapy activity. “As a non-writer/writer-adjacent creative was nice to do an activity that was more native to my own creative sensibility.”

The experience culminated in Breaking the Silence, an evening of storytelling focused on exploring life, illness, and identity. (You can watch some of the stories here). The event was open to the public, as well as livestreamed on Facebook, expanding the reach of the powerful stories told. It was moving for both storytellers and listeners alike. “I laughed, I cried, I felt ALL the feelings!” Cara said. Jennifer described it as a night she would always remember. “It was wild to look out into the crowd and see people mesmerized by what they heard.”

“We knew that what we had done had made a difference and resonated with the almost 100 people who attended the presentation,” Allie shared. “It made me so happy to see people excited about putting themselves out there.”

“My perspective of chronic illness was challenged and changed for the better,” Peter added. “The stories represented the community so completely.”

With many already looking forward to next year’s retreat, it is safe to say the event was a resounding success. As for Jennifer’s favorite part? The mealtimes. “I love food, and connecting with people around food...We all sat with different people each meal and that was a great way to get to know people in smaller conversations.”

Cara agreed. “I was so impressed with the food and how the volunteers managed to cook actually delicious food for us with so many different dietary restrictions!”

Both Allie and Jennifer described the experience in one word: intense. “The conversations were challenging at times - we didn't shy away from things that were difficult to talk about,” Allie said. “But we also laughed, played games, relaxed, and really got to know each other.”

“I was physically tired afterwards, but felt a huge sense of gratitude,” Jennifer added. “For the community, the support, the sharing, the incredibly delicious and healthy meals, the storytelling, the sleep, the trust, the digging deep, the friendships.”

Photos by Amanda Crommett

© 2018 The Suffering the Silence Community, Inc.