Boston

The waiting room at the Massachusetts General Hospital (MGH) Center for Pediatric Hematology and Oncology (Pedi-Hemonc) hasn’t changed much in the past seventeen years. The same poster depicting an underwater city inhabited by personified fish (billboards read “Kelp-a-Cola”) has hung on the walls since at least 1997.

But now, it’s 2013 and I’m the weird big-kid at the doctor’s office. As I wait for my annual visit with Dr. Dave Ebb – the same doctor I’ve been seeing since I was six years old and all of this started – I’m comforted by the familiarities: the fish tank, the posters, the faces of the nurses.

A child’s howling snaps me out of my brief meditation. I watch as his father, a young man maybe in his 30s, drags the screaming child back into the waiting room. The man is tired. He speaks to his child in soothing French. Dark circles have circumnavigated his eyes; this is a man who – like all of us – was not ready for what he’s dealing with.

The day before, sitting on an airplane, I would have grumbled and rolled my eyes at the child’s shrieking. But today, here, I try to send the poor frumpled father a few ounces of positive energy. Retrospectively, I sympathize with both of them.

In January of 1997, I was a rambunctious six-year-old in Ms. Hurley’s first grade class at Thoreau Elementary School in Concord, Massachusetts. By the end of the month, my young life and that of my family had been irreversibly wrenched from carefree toddlerdom into a dark chaos. My parents’ everyday vocabularies swelled to include words that we wished we would never need outside of scrabble. Transfusion, immunosuppressant, inpatient, corticosteroid.

Despite initial treatment for the more common and less serious idiopathic thrombocytopenic purpura, after a lack of response to treatment, I was diagnosed with aplastic anemia – a rare blood disease in which the bone marrow is damaged, resulting in a deficiency in all types of blood cells. The disease is uncommon, particularly among young children, and often idiopathic (the cause is unknown). In 1997, there was fairly little known about the disease; outlooks for diagnoses were not positive, with a fairly high chance of fatality.

As a young child, some of my earliest accessible memories were burned during this time period. I spent most of early 1997 in and out of MGH, with long stints inpatient receiving treatment or in my parents’ home in almost total isolation due immunosuppression and fear of infection. Most of what I know about my treatment I’ve learned in retrospect. My clearest memories now seem surreal – a direct look into the warped priorities of a six-year-old mind. I remember making pizza-bagels with my godparents, playing super-mario on the original Playstation. I remember being woken up every hour during the night to have my vitals taken. I remember my inpatient roommate, Anthony, who – for some reason – I had in my memory as being hospitalized with a broken leg (I later had the memory corrected by my parents who told me that – obviously – this boy would not have been on the inpatient pedi-hemonc floor with a broken bone. This makes sense.)

Thanks to the amazing care I received at MGH, I was treated efficiently and effectively and responded well. By the end of 1997, I was back at Thoreau causing trouble.

But as I got older and year after year of remission went by (knock, knock), I began to realize the far-reaching effects that 1997 had had on me and on my family. I matured from empathizing with the crying toddlers to thinking more about the tired parents standing behind them, trying to console their red-faced angels while simultaneously wanting to join in and sob and throw furniture and tell the whole world that no one prepared us for this and it all happened so fast and how can any person take this and please, G-d, please just let us get through this, please…

It took over a decade, but somewhere in my late-teenage years, I began to outgrow my adolescent narcissism and realize that my early brush with fatality had been more than getting jabbed with needles and taking yucky medicine.  I saw my mother’s protectiveness as a woman who’d almost lost her son and couldn’t bear to let him stroll into harm’s way again. I saw my sibling rivalry with my older brother and his independence not as typical brotherly feuding, but the result of a year of extremely skewed parental attention during a formative time in both of our lives. I even saw my own existential ponderings and teenage rebellions as a way of finally coming to terms with the nearly abrupt end to my childhood.

This story has a happy ending. The sick boy and the stressed parents are now a healthy young man and a slightly-less-stressed pair of parents. My appointment with Dr. Ebb is an annual activity to which I now look forward. I still get my arm poked, but mostly I just enjoy the chance to chat with the amiable man who saved my life seventeen years earlier.

As I watch the crying boy and his flustered French father, the latter glances at me and does a bit of a double-take. As the awkward big-kid, I’m used to getting odd looks, but I realize something that I’ve never thought of before. The look on his stress-lined face tells me that he’s put two and two together. He knows that I’m not here for treatment; I’m here as the proof that there can be a happy ending. I’m here to remind him that there’s more than one way out of this.

In the past, I’ve always thought of my ability to help the kids in treatment – I was there; I know what this is like for you. But it’s taken me close to two decades to realize that I might also be able to inspire hope in the family members, the ones who really understand what’s going on.

This is the happy ending part. In October, thanks to the incredible people at the Boston Athletic Association, I was officially invited into the elite field to run my debut marathon at the 2014 Boston Marathon. I immediately began to think about how I could use my debut marathon in Boston as an influential and positive story for others. To be perfectly honest, it was my mother who put it all together for me. MGH has a huge presence at the Boston Marathon, why not do something for Pedi-Hemonc?

It was the perfect idea. What better distraction for a group of inpatient kids than a professional athlete to come and talk? Particularly when that athlete can tell of how he sat on that very same floor and had to go through the same bizarre everyday rituals that they are now facing? And what better message for the parents of these children than that of a young man who can say that he was once stricken to a bed like your son and had a tube in his chest for half a year and is now back in Boston to compete at the front of the biggest marathon in the world?

For me, running has always been most meaningful when I run for something bigger than myself. My teammates in college, the students in the STRIVE Center, now the patients and families and doctors at Pedi-Hemonc.  While I sometimes see running (and professional athletics in general) as a selfish and silly endeavor, using my athleticism to help others changes the paradigm. Providing a beacon of hope in what I know can be a dark and tumultuous time gives me all the strength I need. I know that my next trip to Boston will be special.

On April 21, 2014, I’ll be running my first 26.2 mile race at the 2014 Boston Marathon!