Christopher: Why I PMC

“Gents: This year I propose some cathartic suffering.”

So started Ed’s email in 2011 suggesting that in honor of Christopher, his five year-old nephew, that a group of us ride our bicycles down the spine of Vermont the first week in August. A two-day ride of some 300 miles with lots of hills.

The email went on to describe how Christopher, recently diagnosed with neuroblastoma, was undergoing chemo and radiation treatment. How Christopher’s family had packed up a moved from upstate Vermont to the suburbs of Boston to be closer to the doctors and closer to a cure.

“I will not cure his cancer but maybe this long ride will help me start to understand some small part of the pain.”

By the end of the email it was hard to say No. So we didn’t.

That summer, sixty miles into our ride we met Christopher and his family for a brief picnic in a small park. Chemo and radiation behind him, Christopher cheered the arrival of Uncle Ed and raced across the grass to greet him. Together they sat on a blanket in the shade of a large oak, eating PB&Js, Ed’s legs outstretched, leaning on one hand with Christopher, facing Ed, on his knees but bolt upright, arms gesturing wildly, telling stories between bites. The rest of our small group mingled with family and worked our way through lunch. Ed and Christopher sat on the blanket laughing, enjoying the day.

Eventually we said our good-byes. Christopher made sure Ed’s water bottles were topped off, the tires were properly inflated, the brakes worked and that the pedals spun smoothly. The two hugged and we were on our way. Christopher ran to the edge of the road cheering, ringing a cowbell loudly. “Have a great ride! See you soon!” The next several miles passed quickly.

The scene repeated itself the following year. A year older, a few inches taller and several pounds heavier, Christopher had more stories and Uncle Ed was eager to hear them all. Ed had just completed an ironman race and though Christopher did not know exactly what such a race entailed he knew it was a long swim, and a long bike ride and a long run and that his Uncle Ed was an Ironman. Christopher carefully inspected Ed’s bike after lunch and said in a few years he was going to join us. Someday he might even be an Ironman. We agreed that after what Christopher had gone through an Ironman would be a cakewalk.

In 2013, with a cruelty reserved for a few diseases, cancer returned. Though the ride would go on there would be no picnic. That summer Christopher’s family moved to Michigan following one of the few doctors specializing in Christopher’s rare form of neuroblastoma. The night before we started our ride, Ed shared a video from Christopher, forwarded by Christopher’s mom. Standing on a beach, bald head, blue eyes, blue shorts and proudly showing us a blue bracelet like the ones the Ironmen wear, he wished us well. “Hi Guys. I hope you have a great ride. Be safe. See you soon.” Ed wept.

At the end of the summer, Christopher’s family moved back to their home in Vermont. Treatments having run their course the family attempted to restore a semblance of normalcy for Christopher and his two younger siblings. For a few months, Christopher attended school when he could. Classmates in Christopher’s tight-knit community shaved their heads in bald solidarity with their ailing friend. Eventually school became too much. Ed visited on weekends. At first they were able to enjoy walks, even skiing once in a while on one of the easier slopes, but eventually Christopher became too weak. By late fall his condition declined precipitously. Christopher passed away in November 2013. Though countless friends and family grieved the service was small and private. I remember the day was cold and grey.

Ed does not speak much of his loss. Not knowing what to say I say nothing. I know that Ed misses his nephew as he would miss his own son. I cannot imagine such a loss.

Our annual rides continue. In early August we gather in upstate Vermont and start pedaling south. Prior to our ride Ed pins a laminated photo of Christopher onto the back of his shirt. He does so with care and reverence. He lingers over the image of a smiling Christopher, with his blue eyes looking directly into the camera. I do not speak with Ed as he prepares his shirt and others too give him space.

I have a snapshot of Christopher attached to a mirror in my bedroom. A photo taken while Christopher was in Michigan, likely the same afternoon he recorded the video his mother sent. I see the picture every day. He is standing on a beach, bald head, blue eyes, blue shorts and proudly wearing the blue bracelet. In the background the sky is blue. Lake Huron is blue. Christopher is smiling.

During one of our rides I mentioned the snapshot to Ed. I tell him I think of Christopher often. He told me that he has the same picture. After a long pause he turned to me and said, “You know, when Christopher knew he was going to die he said he wanted to be buried with my Ironman finisher’s medal and his blue bracelet. I miss him everyday“