“You have to meet Beth Ellen,” Don said as the plane took off from Boston on our way to the Annual meeting of the National Hemophilia Foundation (NHF) Meeting. “You two have so much in common,” he added.
I shrugged and said something non-committal. Later I learned that Beth had given him the same reaction. He was baffled by our disinterest.
When I first met Don, he was twelve and I was fourteen. We were both in the hospital. He had just received an infusion of factor VIII and was strolling down the hospital corridor pushing the I.V. poll in front of him. An intern was preparing to stick one of my veins with a needle, so that I could receive fibrinogen concentrate.
We quickly became friends. When we had both graduated from college, Don asked me to run for office in the New England Hemophilia Association. Once I was on the Board, he encouraged me to go to the NHF Annual meetings. This was almost forty years ago.
I had been raised in a loving and supportive family. They cared for me and would love me without regard to the limitation and complications caused by my bleeding problem. This kind of support was vital to my health and well-being. Yet even my mother, try as she might, could never fully understand what it was like for me to have a bleeding disorder. Additionally that kind of support was filtered by complex emotions, such as sorrow, fear, and anger.
Interacting with people who also had a bleeding disorder gave me another kind of support. There was an understanding between us. Although we had many different interests, we had one thing in common. Before and after Board meetings, we might talk about our families, where we went on vacation, our life goals and attitudes but we rarely socialized with each other. We knew, however, that we could get unbiased and dispassionate advice from people who had “been there, done that.”
Why Beth and I resisted meeting each other, I will never know for sure. We were strong, opinionated, and stubborn young women. It may have been that we were used to putting on a façade of self-confidence, like one would put on mascara or lipstick. Neither of us wanted anyone to feel sorry for us or make assumptions about what we could or could not do. “One size does not fit all” does not apply only to clothing; we knew that just because Beth had hemophilia and I was born with no fibrinogen, it did not mean that we had had the same experiences or made the same choices in our lives.
When we did start talking there was little that could stop us. We sat in NHF Board conference rooms scribbling notes and passing them to each other like schoolgirls. We compared our collections of earrings… the type that did not require ear piercing. We stayed up most of the night talking about the bleeds we had each experienced from ovarian cysts. We shared information about how to survive a mammogram and find makeup that covered black and blue bruises. We made fun of doctors who had cautioned us not to shave our legs.
Despite our hesitancy, Beth and I found a connection that was immediate and deep. We had more in common than earrings and bruises. We understood each other’s fears and dreams. Don was right; Beth and I had to meet.