The way it worked out for this year’s Girls With Guts Retreat was that I headed to New York on Day 13 after my 12-Day Family road trip through the Southwest. I celebrated my 18-year Stomaversary on that trip, I woke up in Santa Fe, New Mexico and spent my special day exploring The Petrified Forest National Park in the Painted Desert. On Thursday I boarded the Red Eye in Phoenix, AZ and woke up to a new day in New York!
Girls With Guts is a registered 501(c)(3) that has been around since 2013. They are a patient support and advocacy group that works to empower women through various online programming as well as two in-person events a year. In fact, all of their Board Members and Volunteers either have IBD and/or an ostomy or support a spouse/partner who has IBD. This was my third time being involved in a retreat.
I rented a car at JFK and set out to drive myself to Iroquois Springs in Rock Hill, New York. I was so surprised that after about 20 miles of battling New York City traffic, I was in beautiful rolling hills, covered with trees that were beginning to change colors with the arriving autumn.
I arrived at camp and got settled into my bunkhouse that I shared with other presenters and volunteers. We all walked to dinner at the dining hall, that evening at our Lake House meeting room all of the attendees settled in to get to know each other a little better with ice breakers and crafting.
The special thing about Girls With Guts, or any support group really, is the shared experience. Although we are all there for different reasons, at different places in our journeys, there is a common thread that ties us to each other. I often speak about the importance of support when healing from our trauma, there are many ways to find that support, however, I firmly believe in the power of face-to-face in-person connections. In the past few years, as we have gingerly navigated a global pandemic while managing chronic illnesses, the opportunities for in-person support have been almost impossible. I think all of us were filled with gratitude as we drifted off to sleep that night, to be together this weekend, in person.
Waking up to a chilly Saturday, we gathered for breakfast and began a day packed with fun and empowering programming. We were asked to bring black tank tops for a photoshoot inspired by the Japanese art of Kintsugi, in which the artist fuses a broken piece of pottery with gold to repair it. With the photoshoot, the idea was to flip the stereotype of chronic illness and disability, and I was eager to participate. Going into the weekend, I challenged myself to step outside of my comfort zone, knowing I would be in a safe and loving space where I would be supported. Girls with Guts photographer, Sarah Lemansky set up a photo studio, and we each had the opportunity to be the model. We adorned ourselves with gold glitter, I chose to highlight my midline incision scar and pose with my pouch showing, which I generally do not do. The best part was being cheered on by the other women and cheering others on as they had their moment in front of the camera.
After lunch, Dr. Alexandra Fuss, Assistant Professor within the department of psychiatry at Yale School of Medicine who serves as the Gastropsychologist in Digestive Health Service at Yale New Haven Hospital presented. Her amazing ‘All Vibes Welcome: Getting in Touch with our Bodies and All the Feelings That Come With it’ was an interactive educational session aimed at normalizing all of the emotions we experience. As an IBD patient herself, she was able to lead us through this important conversation with humor, empathy and compassion. I was lucky enough to present that evening, my time focused on looking inside ourselves, at what is not visible in a mirror. I was also able to highlight our Ostomysecrets products, our amazing me+ program, and what living as a woman with IBD and an ostomy has taught me. We finished the evening with a lakeside campfire, roasting marshmallows and making S’mores.
Sunday, our last full day together, came so fast. After breakfast, we had the option to complete a high ropes course. I made the walk to the course with the intention of attempting it. However, once I saw it, I realized the final obstacle, a cargo net, was most likely out of my ability level, physically. I was a bit bummed to not try it, but cheering on the Girls that did was really fun, and I was so proud of those that conquered that course, it was very difficult. It’s okay to be realistic about our abilities, and I gave myself a gold star for even considering doing something that far outside of my comfort zone.
The afternoon brought small group sessions that were more intimate, there were a variety of subjects discussed; intimacy, sexuality, mental health, grief, PTSD, advocacy and an IBD/Ostomy hack-a-thon. At one of the breakouts, one of the women mentioned that she had learned not to use the word "victim" and that she had replaced it with "survivor." That mindset change, and acknowledgement of what I have faced, battled and yes, survived was a big moment for me personally, I am, truly, a SURVIVOR.
Sunday night was our big Homecoming celebration, we could interpret that theme however we liked, so I chose to wear a party dress. It was definitely a come-as-you-are kind of party, and that is the beauty of Girls with Guts, no matter how you were dressed, from PJ’s or marching band t-shirts to Gowns and Stilettos we were there to celebrate and support the women surrounding us. With women attending in their 20’s up to their 60’s everyone danced, laughed and chatted late into the night. We had a "Sashion Show" where women created sashes and strutted across the floor while being cheered on wildly by the crowd.
One of the remarkable things about attending the retreat is seeing the change from Friday evening to Monday morning, in such a short time the bonds and friendships created are so obvious. Everyone is gathered closer, hugging and supporting each other and exchanging contact info. These bonds and common threads will carry us through until we can be together again.
After 16 days on the road, six states visited and the GWG retreat, I was definitely ready to be home, sleep in my own bed and be reunited with my family. As I made the scenic drive back toward NYC and JFK I felt invigorated and inspired to continue my work supporting my Ostomy community in my day-to-day role at Ostomysecrets. I am so grateful to be able to assist people along the way on their own Ostomy Journey, as well as having a new outlook on my own. Eighteen years is a lifetime, and as time has gone on, I now understand I have not only survived but I am thriving.