maine

In The Middle of Nowhere, But Not Alone

By Shelby Smoak

Syrus O. lives in the middle of nowhere: Castine, Maine. With a population of under fifteen hundred, excitement here involves watching snow banks accumulate in the winter and, so the town website claims, walking Main Street in the summer.

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But outside of his hemophilia, Syrus is not much different from other boys in other more populated places. He loves playing sports and video games, and spending time with his friends. He cherishes learning, observing, analyzing and just plain “existing” so he says. He also loves bleeding disorders camp.

Syrus has been attending Family Camp at Lake Winnipesaukee in New Hampshire since he was a toddler. Though his memory is vague, thoughts of that time and camp conjure up “very positive” feelings, especially of a particular playground he always adored. In fact, Syrus’ act of fervent rebellion was sneaking away from his mother just to go swing on that swing. Camp has always been a welcoming and inclusive space for him. Even when he was little, there was always something for him to do and a place for him to be.

While his struggles with a bleeding disorder have presented some unique challenges in other aspects of his life, camp, Syrus says, hasn’t done anything to exacerbate that. If anything, it’s done the opposite and given him a place to vent about life issues related to having a bleeding disorder, a thing that his non-bleeding disorder friends “just wouldn’t get.”

He is also thankful he can seek advice from those who’ve experienced similar problems. For Syrus “camp is an amazing support network.”

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Syrus describes the camp community as “welcoming and warm” and “full of entertaining, intelligent, charismatic, empathetic, respectful, authentic, resilient individuals.” Camp is home. The community has helped him develop as an individual to the point that, without camp, he feels he wouldn’t be so considerate, so empathetic, so caring and, so understanding. “I look forward to camp every year. Some of my best friends come from that community,” he enthuses.

From camp, he’s learned “what it feels like to be unconditionally accepted and loved.” Camp is, Syrus says, “my family.” He encourages all his blood brothers and sisters to join him at camp. “You’ll definitely get something out of it, and so will everybody else in the process of meeting you,” he says. He adds, “Please - be part of the family. We’d love to have you!” So if Family Camp at Lake Winnipesaukee is your area camp, sign up! Go! And say “hey” to Syrus when you get there!