My condition was variable. My condition is variable. None of the experts knew how it might evolve. They still don’t. No path. No guide. No road map. Instead I was given other markers: chronic, episodic, idiosyncratic. When something goes haywire, and it often does, there’s no satisfying explanation. I’ve had seizures of unknown origin, rashes of unknown origin, gastric attacks of unknown origin. So I stop asking how. And why. Or even when.
I remember being told that my illness would not kill me. That, I thought, was both the good news and the bad news.
One day I was simply walking funny. The next day I was considering impending paralysis. A gradual but visceral slide. Having a name for my condition divided my life. Before I knew. And after. In that initial adjustment period, I felt my vision sharpen. I watched myself separate meaning from fluff. I decided where to place my dwindling energy. Though denial, despair, and bitterness came knocking, I sided with authenticity, loyalty, and hope. I’m more concerned about kindness than status. I value generosity, especially emotional generosity. I relish pure moments. Today it was an afternoon gelato at Cafe Umbria. Seat in the sun. Al fresco. Trusty Gus in the chair next to mine.
I remain true to my core, future-focused, well-adjusted. Has that provided any relief to those in my circle? Have the people closest to me found a way to cope with my illness? Have they been able to follow my lead? I don’t know. And I’m not sure those are the right questions to ask.
Instead, I’m trying to see how we have supported each other in the coping process. I awkwardly hold my mother when she sobs out her guilt. In turn, she offers her spiritual faith. I try to calm my father when he grows agitated about the lack of answers and abundance of medical mysteries. We look to baseball for distraction. I often use humor to quiet my wife’s fears about our future. She is promise and devotion to me. We are each alone. Together. Trying.
Lovely Randy, but now I remain tearful. My prayers go out to Shirley, Skip, Leslie and you.
You are a wise man, Randy, even as you struggle with these questions.