I’m hiking the Clatsop Loop Trail at Ecola State Park on the Oregon coast with my 14-year-old daughter, Helena. We’re here instead of home in Billings, Mont. to solve the mystery of why her once-slender dancer’s ankles are swollen, bruised and painful.
“I hope this is the right path, but it could be that other path,” Helena said.
She was referring to our 3-mile hike, but I was thinking of our nearly 2-year medical journey.
Turns out we were on the right walking path. Hastily-scoured maps and travel guides led us to expect inspiring views off Tillamook Head, not the deep forest scenery we encountered. It was lovely, though: woodlands, gentle yet grand; time together, exquisite yet evanescent, the silver lining of an emotionally fraught expedition to Randall Children's Hospital in North Portland.
Helena may or may not be on the right medical path. We traveled to Portland for Helena to be assessed for a program for kids with amplified pain, a complex mind-body syndrome she was diagnosed with just before Christmas. That diagnosis by a pediatric rheumatologist at Children’s Hospital Colorado came months after he reversed his initial diagnosis of juvenile arthritis, an incurable autoimmune disease.
Before that, she’d been seen multiple times by three different Billings sports medicine specialists, who ordered X-Rays and MRIs, put her in orthotics, got her off her ballet pointe shoes, told her to stretch her tight runner’s calves and referred her to physical therapy.
After more than a year, she was told her grievance was not orthopedic, but rheumatological. There ensued courses of cortisone shots, oral steroids, high-dose anti-inflammatories and an elimination diet to address the arthritis, then cognitive behavioral therapy and lymphatic drainage massage when the diagnosis changed to amplified pain. None of it worked. That’s how we hit on Portland, home to one of half a dozen facilities in the U.S. that offer intensive treatment programs for pediatric chronic pain.
I put work on hold, lined up grandparents for my 13-year-old son, drove 900 miles and checked us into the Ronald McDonald House for the next day’s appointment, where the evaluating physician declared Helena does not, in fact, have amplified pain.
He suggested sports medicine.
That’s when we took the hike. I did have a reason for taking my gammy kid on a long, steep trek: doctor’s orders. Although by the time we headed to the coast from 96-degree Portland, those were technically no longer doctor’s orders, we’d for so long operated under the rheumatological principle that activity, while painful, is beneficial.
A little hike seemed reasonable.
That seems bonkers now the Portland sports medicine doc has delivered his verdict: an uncommon-but-not-unheard-of-in-young-ballerinas tendon trauma turned chronic from insufficient rest. His orders: complete immobilization of first one, then the other ankle, i.e. the boot.
Is this the right path? Who knows. Every time, every doctor seems so sure he or she is right – and we have been, too: each new diagnosis makes so much sense. Could it be another path? Easily. Attached as I am to the old-but-new idea of a sports injury, we’re sticking around Portland to turn over other old stones, to wit and with a heavy heart rheumatology.
William Shakespeare’s Hamlet said, “there is nothing either good or bad, but thinking makes it so.” Could that possibly be true for the Ronald McDonald House families with children hospitalized with E. coli, traumatic brain injury, depression and eating disorders? Or for Helena, a gifted, joyful athlete sidelined by unexplained pain? Yet how else to grasp the improbable bright side: instead of dance and running last school year, the repertory theatre production of Chitty Chitty Bang Bang, choir and student council; instead of driver’s ed, pre-season cross -country and Billings Mustang’s games this summer, a road trip with mom, the prodigious compassion of strangers and acquaintances, the delicate humanity at the Ronald McDonald House.
Just as our coastal hike was unexpectedly more about soul-stirring woodlands than sea-soaked cliffs, Helena’s life has become more about the enigmatic misery and majesty of real life than about classes, carpools and middle school drama.
I’m pretty sure that’s the right path.