Nobody knows how long a life will be, but at a young age, Nathan Crowell of Sandwich and Mashpee knew his certainly would be shorter than his peers. And that knowledge affected how he lived.
(This is not a complete transcript of the radio story. The full story can be heard by clicking above.)
"He never wanted his life to be defined by Cystic Fibrosis," says Nathan's father, Paul Crowell, who runs Crow Farm in Sandwich. "He always wanted to make sure that he was known for who he was and not for what particular ailment he might have. If it was up to him, I don't think he would have let anyone know he had it. He wanted to be him, not the sick kid."
Nathan was diagnosed with Cystic Fibrosis before he was even born, and very few people with the chronic lung disease reach age 30. To look at him, it's unlikely you'd know just how sick Nathan was. He was tall - well over 6 feet. His arms were tattooed, he had body piercings and he chose striking hair colors and styles. Nathan was an individual, his mother Christine Drew says, and he welcomed conversation, taking an interest in people of all ages, in a town that attracts visitors from all around the world.
"Nathan would often go out to breakfast alone," she says, "and he enjoyed doing that because he would meet strangers. He was not inclined to dress in maybe what might have been the most favorable or positive presentation. And he didn't worry about what people thought of him. Not in a bad way, but just a comfortable in his own skin."
One of Nathan's tattoos was of the Sandwich board walk, where he often spent summer days with friends, leaping from its weathered planks and into Mill Creek.
"At that point of his life," she says, "when he was 15 or 16, I would guess they were probably the happiest years of his life because he had more freedom with his peers. At that time he was healthy enough that he was keeping up with his peers, and of course summers were spent down at the board walk jumping."
Sometimes Nathan's decisions were at odds with what was best for his health. In his final years, during his late teens, Nathan developed diabetes. But he ate what he wanted, refusing to focus on his medical chart. He wouldn't test his blood sugar, telling doctors he knew how he felt and he could feel when his numbers were low and he needed insulin.
"Nathan's philosophy in life was enjoy yourself," Drew said. "Do what you can. Do what you want to do -- and sometimes that wasn't always a good relationship with his health, but Nathan felt that he didn't know what the time limit would be, and he was ver clear that he didn't want to be dictated by his health. So he did what he wanted to do and he had a good time doing it."
That attitude -- life, and living it at all costs -- affected the people closest to him.
"What I learned from him is courage and strength, and believing in who you are and who you want to be," Drew said.
If Nathan liked it, he would do it, his father says, especially when it was something others weren't' doing. Like the time he joined the field hockey team in 8th grade, when he was the only boy on the team.
"He had, what I would call a very young soul. Everything was so new and exciting to him. Most little kids are like that, but even when he grew older. When meet someone with sense of awe, when you met a person like that, it's very encouraging because it brings things into a different light."
Nathan used his time well, developing friendships and chasing dreams. But still, time was short.
"Approximately 2 years ago," his mother said, "Nathan was told that he only had a couple of months to live. And the couple of months passed, and he actually made some progress and was doing quite well. Then he and his doctor had a discussion, and Nathan was 20 at the time. And he asked him, 'Nathan, do you think that you'll live to be 21?' And Nathan said, "No." And the doctor said, I don't either."
Nathan did live to 21. He was determined to. One of his tattoos was of a lighthouse, because he saw himself as the shining tower that would weather the storm. He held fast to the goal of reaching age 21, when he would be able to go to Foxwoods Casino, and play poker, and have a legal drink.
"Nathan would suggest if things weren't looking good or feeling good that you just change the channel," his mother said. "And that was in reference to a question. I asked him. 'Are you afraid, are you sad?' And he said, 'Well, I try no to think about it.' And I said, 'How can you not think about something so significant?' And he said, 'I just change the channel.' … And when he wrote his wishes, he made it clear, he said he did not want people to feel badly. He did not want people to think, 'Oh, I wish he had done this,' or, 'I wish he had done that.' And then he wrote, 'Because I did what I wanted, and I enjoyed myself. So don't be sad."
Nathan died on February 4, not long after he visited the casino, where he spent an entire night playing cards and sharing jokes with strangers. This fall, on his birthday September 9, Nathan's family and friends will assemble at Sandwich Board Walk to the remember his life and the choices he made -- choices that defined him and inspired others.
