It has been over a year and half now since my last flareup began. Guess what? A year and a half later and I am still dealing with this same flareup. Since February, the flare has been describing a trajectory towards healing. But healing does not mean healed. Healing does not mean a permanent fix. It does not describe an endpoint no more than growing describes a child or learning describes a student. Healing happens on a continuum.
I feel the need to defend the obvious because people are often patting me on the back because I tell them that I am mostly healed. Thanks for the encouragement. I know I can use as much as I can get these days. But in the same breath, do not underestimate what I mean when I say I am healing.
To say I am healing is like saying the glaciers are moving. Indeed they are, but they are moving on a geological scale. When most of us wake up with a headache we take and aspirin and can say we are healed all within an hour. When we take antibiotics for an infection, we are often healed within 5 days. When we suffer a sprain, we are often running again within a few weeks. With those numbers as a baseline, it is hard to comprehend the fact that the trajectory of my “flareup” can take months, even YEARS to fully “heal.” When I am at the beginning of a flare, I have already come to terms with the prolonged battle that will ensue. Of course, there have been false starts and sometimes the cocktail of drugs I am on can empirically reduce the length of a flareup, but that still takes months.
To say I am healing redefines the very word. I have had flares that ended on a Saturday after six months of pain, wound care and increasing dosages of meds only to have a new one start on Monday. Can anyone REALLY say that I was healed during those two days? Did it REALLY matter? What is the definition of healed? Does it simply imply a lack of symptoms? There is no test for Pyoderma Gangrenosum. No one can look at my blood between flares and state that I have PG. Whether the momentary peace lasts for a day or years, there is nothing to hang my hat on. No point in time where I can say “healed” with any level of confidence.
To say I am healing completely ignores my emotional state. As I’ve written about here, it is the time between flares that is the most stressful for me and my family. Though I actively avoid catastrophizing the situation, I do have history on my side. I know that a single spot on my leg can translate into a full on flare that can cripple me. Trauma to my skin may, or may not, result in a painful flare. Between flares is when I am more engaged with my family, throwing the football with Marc, exercising my thumbs with Michael and dancing with Coco. Each of these activities has resulted in a flare.
When there is no peace, can there be healing?