224 million, and counting. That's how many seconds my son, Matthew, has been enduring his medical nightmare. That's more than seven-and-a-half years. I measure my son's time in seconds because each moment represents his exquisite agony of searing, burning, torture. That's not just Matthew's description but one familiar to others suffering from CRPS - Complex Regional Pain Syndrome.
Pain is subjective and it's difficult, but not impossible, to quantify. The McGill Pain Index addresses that head on. It was developed by Dr. Ronald Melzack at McGill University in Montreal, Quebec in 1971 to help doctors to more specifically and uniformly evaluate a patient's suffering. The index assesses pain based on answers provided by the patient to a detailed three-part questionnaire.
To put the 50 point McGill Pain Index in context: a sprain falls somewhere around 14, while arthritis and a fracture approach 20. Higher up the scale, in the mid-to-high 20's, sit non-terminal cancer, chronic back pain and fibromyalgia, in ascending order. From the mid-30s to 40 are childbirth and the amputation of a finger or toe. CRPS sits above them all. According to the Index CRPS causes some of the most profound pain imaginable.
My son recently made me aware of this scale, not to gain my sympathy or attention, but in an attempt to explain what each moment feels like for him when he is suffering. The McGill Pain Index only told me what I already knew. His occasional screams have become commonplace in our home -- moments where his pain is too great to hold in. Equally revealing, his eyes expose fatigue and frustration which mar his youthful, striking good looks. Even a smile cannot fully hide his sadness and constant agony.
From the outside, and by most objective measures, Matthew appears healthy and strong. But nearly half of his 18 years have been spent in a private, personal hell. Matthew's struggle impacts our entire family but the emotional anguish which his mom, sisters, grandparents and I endure, can't come close to approximating the nerve pain he suffers. It has claimed much of his youth, rendering him unable to attend school full-time since the 5th grade, save various stretches of a few months where his pain inexplicably and miraculously abates, only to return, unannounced with full vengeance. While his mom and I are counting on a cure, or at least a viable treatment to once again get him into remission, our son is counting each second, as he does every day, until the pain goes away.