We are on this long and winding road, Anthony and I. And while we do not really know how we found ourselves on this road – here we are.
At first we felt like travelers suddenly bumped from our flight, strangers stranded in a strange land. We did not know the language, could not communicate with others and money was running dangerously low. Scared to death we would not be able to catch a ride home, we just started walking through the fog on this long and winding road. We did not even know if we were headed in the right direction because there really isn’t a map for this road. Right foot. Left foot. Right foot. Left foot.
With each step we learned a piece of the language. We met a guide who said, “You are not alone.” And one by one, at every bend in the road Crohnies and their caregivers fell in step to walk beside us; they told of their journeys on this long and winding road. Eventually the fog lifted and we started seeing others on the side of the road looking as terrified as we felt when we first stepped foot on this life path – we beckoned to them. “It’s OK. We got bumped, too. We’re all here. We’ll walk with you.”
So, every day we get up and we walk and give thanks that we are still walking. Recently, the morning after we learned of Bridget’s passing, Anthony was declared in remission. He was saddened that he couldn’t share this news with her; he was shaken to the core and burdened with survivor guilt as he helped carry her to her final resting place. Right foot. Left foot. Right foot. Left foot. No matter how heavy your heart’s burden is, you keep walking. Right foot. Left foot. That’s how you make progress on this long and winding road.
Today, we rounded yet another bend on this long and winding road. We stopped long enough for an infusion. For many Crohnies, an infusion is sort of like stopping to tank up before you head off down the road again. Those at this stage of their disease have internal gauges that read E about every eight weeks, so they tank up. But from his last infusion to now, Anthony’s gauge hit E long before it should have and there was a trip to the ER – meaning remission is a fragile thing. Calls to his GI specialist, his GP – medications ramped up, doses of vitamins added – “Watch for signs on the road,” they said. “Wait and see.” Right foot. Left foot. Right foot. Left foot.
On this road Anthony almost lost his life. On this road he wrestled with his God. On this road he watched his mentor’s life slip away on the exit ramp. On this road he found an amazing community of Crohnies and a life purpose. On this long and winding road Anthony was forever changed.