I settle into my aisle seat with a familiar feeling of exhaustion and anxiety. It's been one week since I drove my wife and our son from Los Angeles to Northern California to begin his month-long treatment in the Pediatric Pain Program at Packard Children's Hospital at Stanford University. We rented a two bedroom furnished corporate apartment so our 16-year-old boy could have some privacy and a semblance of normalcy when he finishes his six hours of various therapies and schoolwork each day. My wife, Keri stays with in Palo Alto, taking him to his various appointments while I begin my new routine working in Los Angeles and shuttling back and forth on weekends, or sooner when possible.
Admission to the Pain Program did not come easily or quickly. There are only three slots total and freeing one up means a young patient must first be released. Matthew had been examined a year earlier but in a cruel irony, he was in a brief period of remission from his Complex Regional Pain Syndrome, making him ineligible for treatment. So the wait began again, hoping that a spot would be available while his CRPS flared once again. We waited a frustrating several more months after his last relapse before a spot was finally available.
Pain is a curious thing. Not only is it poorly understood in terms of diagnosis and treatment, it is seldom regarded by others with any real understanding or empathy. CRPS sufferers are often regarded as complainers or, worse still, as fakers because the pain, while severe, is not easy to see. Ostensibly, our son is a normal teenager. But beneath his mischievous grin, charm and almost disarming good looks, he hides a debilitating and constant burning in his left foot which caused him to miss all of middle school and the first two years of high school. That, in turn, robbed him of normal childhood experiences, friendships and first crushes, which has understandably taken a toll on him.
As ridiculous as it may sound, I liken his experience to a familiar commercial for M&Ms, touting a candy coated shell that protects the precious and vulnerable chocolate within from melting. Matthew's shell is a thin and deceiving veneer of confidence, which is only marginally effective at protecting his fragile emotions beneath the surface. Accordingly, his treatment at Stanford attacks the syndrome from the inside out with intensive physical, occupational and psychological therapies. They not intended specifically to eliminate the pain, but to assist him in managing it and functioning in everyday life, better enabling him to avoid melting down when a crack develops in his emotional armor.
Not surprisingly, the program also treats the family unit as a whole, including parent counseling and family therapy sessions. After five years of watching our son live In pain, it's evident that my wife and I are also suffering, along with Matthew's siblings and other members of our family. The treatment is difficult and frustrating, with missteps and breakdowns along the way, but it is no less a blessing to receive it. One skill we are learning is patience, for Matthew, for one another and for the treatment itself. We now embrace and applaud incremental progress and we forgo dreams of a quick fix that never comes. Another valuable lesson is pacing -- for him and for us. So I now try to nap whenever possible as we prepare for what happens next, like Matthew's next treatment and my next flight.