Gifts was written by Bill Castagnozzi, a longtime advocate, writer, and person with ME/CFS. This story is published here with his permission.
A huge, full, almost blood-red moon rose behind the bleachers at the stadium. There was just the slightest wisp of a breeze on this perfect summer night, and I was feeling like a million bucks. It was the first game of a raucous 4-game series between the Milwaukee Brewers and the dreaded Chicago Cubs, and the place was rockin’. My brother-in-law and two brothers, one of whom was visiting all-too-briefly from California, were seated around me. We had been looking forward to this night for months; tickets purchased well in advance in anticipation of a prodigious crowd. Of course, as a Chronic Fatigue Syndrome sufferer, anticipation and trepidation are inextricably linked. How many times, during my almost 20-year battle had events been reduced to being simply gotten through, rather than enjoyed?
How many times was an event experienced through a crippling fog with attendant, often crushing fatigue–where the distance between “energy desired” and “energy-on-hand” was seemingly as daunting as that of the moon from the outer reaches of the solar system?
But on this night, this fine evening at the ballpark–did I mention that I felt like a million bucks? I sat there, trading barbs, mind acute, telling stories, jumping at the crack of a friendly bat sending a well-struck ball into the twilight, surrounded by people who mattered to me–with no thoughts of T-cells, HHV6 viruses, DHEA, Epstein-Barr, brain fog–or the many years when my pleas to the world of medicine were met with empty stares and grab-bag referrals.
No, my thoughts were on the joyous, wild game–and the only two things that this devastating illness actually gives me. One is that I never, ever, take a good day for granted. On some level, I am always keenly aware that I am well that day, and it gives the day a texture, a sheen that I carry with me until I drift off to dreamland.
The other gift is knowing that on days barely navigated–confused, flu-like, and half-awake– the days when CFS humbles me, and drives me indoors making me feel as if I might be disappearing— I can let a perfect night like the one at the ballpark, with that full fiery moon smiling at me, my mind racing and working, oh yes, I can let the memory of that day pour over me like honey, recalling each moment and how wonderful it felt, knowing that there will be other such days.
This is the stuff of survival, and the way we keep ourselves sane. Remembering beauty and purpose, clarity and connection; the ironic gifts of this baffling illness. I have a lot of good days, more than many, but all who suffer carry an almost childlike enthusiasm for each and every beautiful small moment–-when the foggy flu and fatigue lift, and health is temporarily restored. For me, it’s moments like the perfect ball game, the sound of my nephew’s laugh, or the sublime wonder (to steal a line from the Counting Crows) of “the way that light attaches to a girl”. These things and others like it resonate in a manner that one without chronic illness can perhaps never truly understand.
…So when I close my eyes, on a grueling CFS day in February, I’ll haul out that night and savor it, smiling back at the man-in-the-blood-red moon, knowing that on that day, all was well with the world. And await that ineffable jewel of a day when it will be again.