When I left the Communitas retreat, I went straight to work. I felt weird during the two hours that I worked that day, like a part of me was missing, and managed to stick it through another half hour before leaving early and not completing the remaining two hours of the shift. To date, it is the only time I have had to use my sick hours. I got in the car and sat there, didnâ€™t even turn on the AC, for more than a half-hour. I felt like a part of me was missing, and that something in me had fundamentally changed since the last time I had been here, just five days previously.
Five days before, my Mom and I had arrived at a red house with our wagon almost overflowing with stuff that we probably didnâ€™t need to bring. I was nervous, I was stuck with this group of nearly all strangers for the next five days. It felt impossibly long. But before I went to sleep that night, only hours later, I already knew those five days would be way too short. I wanted to stay there forever.
I had done one of the Communitas support groups the spring before the retreat last June. I knew what the mind-body groups were like. I anticipated the skills we would learn, whether it was art therapy or the check-ins that usually lasted most of the two hours set aside for group. What I didnâ€™t anticipate was everything else, the amazing meals cooked by Commonweal staff, the walks to the ocean, the way it was so easy to talk to this group of people, even though less than a week earlier, they had all been strangers. For the first time in my life, I could be myself around people my age. I didnâ€™t have to pretend to be way less sick than I am and then deal with people around me telling me that I must be faking it. I didnâ€™t have to think about all of the little things that make life more difficult in the real world. For the first time since I have gotten sick, I felt okay with the way I was.Â
Anyone whoâ€™s had a chronic illness knows it means fighting two very different fights. One against your body, and one against everyone else who thinks they understand your body. Brittanyâ€™s goal was to, for at least that time that we spent there, make the second fight disappear. All of us came to that retreat for different reasons, but one thing I think we all have in common is the want to be understood. In my almost three years as a medical mystery, what the retreat gave us in those five days was the best thing I could have ever gotten.
Itâ€™s strange to look back on the retreat now, so many months later. It feels like a lifetime ago, and also like it was just yesterday that I left. There are so many things I feel like I canâ€™t even talk about because those moments are so special to me that I doubt I could even find the words to express how much they meant to me.