By Shelby Smoak, Ph.D.
The folly that follows hemophilia reigned again for a Men’s Fishing Retreat in Rehoboth Beach, Delaware, May 6-8th. Structured around a fishing experience, a veritable Nor-Easter took up camp offshore Friday evening and came ashore Saturday, whipping up waves into 12-foot froths of anger, spewing sheets of rain sideways on the shores and streets of the tiny beach town.
I was there. I saw the perfect storm brewing off the coast. I knew no vessel was going out to brave this storm, and if it was, I wasn’t going. Nor should any of my blood brothers. And when they arrived and we told participants the fishing boat was canceled, no one questioned the wisdom of that decision.
Yet, more miraculous than the wrath of nature outside, our event space was the spirit of the blood brothers—all adult men with hemophilia A or B. In a group familiar with upset plans, participants redirected the lost fishing opportunity into social hangs, poker tournaments, photography lessons, and, of course, numerous rap sessions sharing our various experiences with hemophilia.
Hosted by Country Boy Fishing and sponsored by Medexus, Octapharma, and BioMatrix—men along a cut of the Eastern Seaboard gathered to be together and bond. Fishing was the lure; the people were the real catch. In undistracted conversations, unfiltered honesty emerged, and a frequent refrain throughout the weekend was the lack of such opportunities for men with hemophilia to connect directly.
In addition to the more free-form rap session, structured programming provided more opportunities to engage in conversation. Brandon Young, a person with hemophilia, brought his unique brand of engagement in a discussion of mentorship and the support of “older persons with hemophilia” (a term this “older” person with hemophilia let slide). Octapharma introduced Dr. Claudio Sandoval who spoke on the importance of adherence to treatment therapies, which led to a myriad of discussions on bleeding and the promises of gene therapy.
Medexus brought in community member and fashion designer Christian Harris who coached us on how to buy clothes that actually fit. (Women may be surprised to learn just how interested we were in picking out appropriately fitting pants and shirts.)
My role included leading sessions on using photography as therapy, directing games, and sharing a final night singing session with fellow BioMatrix member and self-styled crooner, Terry Rice.
In truth, there was a Gilligan’s Island feel to the event in the camaraderie and mutual friendships that developed. Indeed, we sat back in with our own tale of a fateful trip whose outcome was far more positive than a group of sea goers stranded on a deserted island. These blood brothers—my friends—formed lasting bonds and left empowered, proof that even a perfect storm cannot dampen our spirits!
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