(excerpted from the Fall 1998 issue of theWI - CFS Association "Lifeline" newsletter)
by Bill Castagnozzi
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 four-day Brewers-Cubs series, and the place was rockin'. My brother-in-law and my 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 were purchased well in advance in anticipation of a enormous crowd. Of course, as a CFS sufferer, anticipation and trepidation are inextricably linked. How many times, during my almost 20-year "battle" had I experienced an event through a fog, with attendant, often crushing, fatigue?--when "energy desired" and "energy on hand" were seemingly as far apart as the moon from the outer reaches of the universe?
But on this night, this fine evening at the ball park, 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 night, while surrounded by people who mattered to me--with no thoughts of T-cells, HHV6, DHEA, CoEnzyme Q 10, or the many years when my pleas to the world of medicine were routinely met with empty stares and referrals to psychologists.
No, my thoughts were on the joyous, wild game--and the two things, perhaps the only two things that this illness actually gives us. One is that I have never taken 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 is knowing that on days hardly gotten through--confused, flu-like, and barely awake--I can let a perfect day like the one at the stadium, with the full fiery moon smiling at me and my mind racing and working--pour over me like honey as I recall 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, this is the ironic gift, compliments or our baffling illness. Would I gladly exchange these "gifts" for a clean bill of health? In a half-second. But for now, like all of you struggling to move forward, I am, on my worst days, braced by the knowledge that there will be other such days, and they will mean more to me than anyone without illness can ever know. And as I close my eyes on a grueling CFS day in February, I will "haul out" that night--smiling at the man-in-the-blood-red- moon, knowing that on one summer day, all was well with the world. And will be again.