Finding layers of community at a bleeding disorders conference

Ethan Ash, a member of the Bionews team (actually, its executive vice president of business development), called me over to tell me it was my turn to hit the golf ball. He interrupted me as I was talking with Erica Millman, another member of our Bionews team and the senior vice president of business development.

Like me, both of them traveled to Denver for this year’s National Bleeding Disorders Foundation (NBDF) annual symposium in nearby Aurora. We met up to have a beer and get reacquainted.

Ethan found this cool game to play while we were sitting around talking and enjoying one another’s company. Simple and engaging, it served as a catalyst for our interactions, breaking the ice and creating a relaxed atmosphere. As part of the play, I ran over to grab a golf club to shoot a ball into a plastic curtain; it had the feel of a round of Topgolf. I braced myself, took a swing, and hit the ball. According to the plastic sheet, I landed in a rough area filled with cacti.

I didn’t think I shot well, but I didn’t care. I was among friends and away from the routine of an ordinary day.

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Essential connections

Spending time with newer and old acquaintances proved to be a significant part of my experience at the NBDF symposium. I appreciated Ethan and Erica coming to the event to get to know the bleeding disorders community. I’m part of that community because both my grown sons have hemophilia, and I’ve been a longtime caregiver.

Our Bionews team, with members living around the world, plays a crucial role in connecting people within and outside the bleeding disorders community. It’s extra special when a team member comes to take part in my world, offering me a much-needed connection with others who work for the company.

Gathering together is a powerful part of what makes us human. I need relationships with others like I need air to breathe. At the symposium, I was able to catch up with friends I hadn’t seen in a while, many of them “blood brothers,” a term we’ve used to describe our close relationships since my oldest son, who’s 29, was a newborn. We laughed at the crazy times we’ve shared attending these yearly symposiums and reminisced about the people no longer with us.

For those who live with chronic illness, community is not just important; it’s essential. It’s about belonging, knowing that we’re not alone and that others walk the same path. We sit in seminars without saying a word as our hearts hear, “I’m glad you’re here. Thank you for reminding me that there’s space for me. I’m not alone.”

While these thoughts may sound trite, I assure you that I feel a rich, deep gratitude and fondness for a space that makes me feel less othered. How many people in a typical day know what it’s like to put a 1-inch needle into their child’s port-a-cath to get the medication into their blood so they can run and play? In this sacred space at the symposium, people share their hopes, dreams, and fears for their loved ones, creating a bond of shared experiences that makes us feel connected and understood.

Through the many sessions offered, we receive invaluable information regarding upcoming treatment options, spaces to grieve, and ways to introduce ourselves to people new to the community. As older voices, my friends and I offer words of hope and encouragement to young families. We remind many of the frightened mothers and fathers that they’re not alone on their journey. “We know how you feel,” we say, “because we experienced the same fears when we were new to the community. Remember, you have what you need when you need it.” This support is not just important; it’s also reassuring and comforting.

Ethan called me again. I didn’t hear him at first because I’d just recognized someone I knew. “Joe, it’s your turn,” he repeated.

I left my friend and promised that we’d catch up before the symposium was over. I then turned to Ethan and said, “OK, I’m coming. Hold your horses.”

I took my glass in hand and raised it to my friend, to toast him with a “L’chaim.”

Erica asked, “Are we finished?”

Ethan, the game taskmaster, replied, “Uh, no. We have six more balls to hit.” We looked at each other and laughed.

While this game might seem small and insignificant, it’s far more critical to me. It let me connect with my people and remember why I attended the conference. I need my community. Ethan and Erica may not have a relation who has a bleeding disorder, but in this space, they’re a big part of my world.

Ethan called me again. “Right!” I said. “Five more to go.” I laughed with him and then hit the ball into the plastic curtain. For me, this setting is a holy place.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.