On the final night of the convention, we had a big fiesta for all the attendees. It took all the energy I had after a third day of workshops (and a trip to Morgan’s Wonderland, the world’s first disability accessible theme park in 110° Texas heat) to put on my dress and walk to the party. At my table there were two college girls from Philadelphia. They asked me why I wasn’t eating. I told these women I just met that I was hungry but didn’t have the energy to stand in line at the buffet. (I didn’t get into a litany of all my diseases; I figured I’d just leave it at “I’m tired.”) They generously offered to get me food. One by one our table emptied as people left for the dance floor. As I was yawning profusely, I felt bad about not being better company and said, “I’m sorry. I’m not usually so not charming.” (Yes, I was so tired that I became inarticulate!) They responded with, “Well you’re very tired today.” As I looked at the dance floor, I remembered all the weddings I attended in years past when I was the first one to hit the dance floor–unafraid and uninhibited. I usually danced all night. Then I realized that I wasn’t tired “today,” but that I’ve been tired for five years. Five years is a long time not to feel like one’s self. There are moments when the loneliness of chronic illness is so overwhelming that resilience seems overrated and illness feels underestimated. And you wonder: Is there any upside to this?
Cysters: Endometriosis and Polycystic Ovarian Syndrome (PCOS)
Outside the ballroom there was another large room (with no music) also filled with other convention attendees. I was searching for someone I agreed to meet at the party and couldn’t find her. As I canvassed the expansive area for a second time, there was a group of six women sitting on couches who told me to take a rest. I thought I’d stay for ten minutes until I got the energy to resume my search but then we got into a deep conversation. It turns out the young woman sitting next to me that night has endometriosis, which is a sister illness of Polycystic Ovarian Syndrome, one of my illnesses. This makes us cysters! She told me about what it’s like to be a single mom with endometriosis.
We compared notes about meds, fatigue, pain, past surgeries, and other procedures. She chose IV-IG whereas I chose plasmapharesis. It was like one of those times when you meet a stranger and immediately bond over mutual love for a favorite band or TV show…except of course we were bonded by pain.
When Pain Brings People Together
All these six women worked for a mental health company back in Boston. Somehow a conversation that started with endometriosis, PCOS, and Myasthenia Gravis went all around the world–making stops at the Stanley Cup, Aaron Hernandez’s arrest, makeup (me answering people’s makeup questions), and Queen. I mentioned my love of Queen and how I wanted to see them in concert but they were not performing at a disability- friendly venue in my area. One of the women, in her fifties, reminisced about watching Freddy Mercury and company in concert at Hyde Park in 1975. Hearing about these women and their different stories–including the Queen fan whose husband is a cancer survivor–I felt an immediate bond. I knew we wouldn’t have this profound connection if not for my Myasthenia Gravis and PCOS.
We all have moments when the pain and fatigue are so intense that we wonder if there is any purpose to it. Then once in a while you meet somebody (or a group of somebodies) so wonderful that you feel blessed. I was reminded of how God can use pain to inexplicably bring people together.
When one of the pretty young women from Boston asked me how I live with so many diseases, I quoted Isaiah 40:30-31:
“Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
–Your Stylist, Jessica Gimeno