{"id":983,"date":"2022-09-06T23:09:09","date_gmt":"2022-09-06T23:09:09","guid":{"rendered":"https:\/\/humansofchronicillness.org\/?p=983"},"modified":"2022-09-06T23:09:09","modified_gmt":"2022-09-06T23:09:09","slug":"bill-c-2","status":"publish","type":"post","link":"https:\/\/humansofchronicillness.org\/2022\/09\/bill-c-2\/","title":{"rendered":"Bill C."},"content":{"rendered":"

Gifts<\/strong><\/em> was written by Bill Castagnozzi, a longtime advocate, writer, and person with ME\/CFS. This story is published here with his permission. <\/em><\/p>\n

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\u2019. 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?<\/p>\n

How many times was an event experienced through a crippling fog with attendant, often crushing fatigue\u2013where the distance between \u201cenergy desired\u201d and \u201cenergy-on-hand\u201d was seemingly as daunting as that of the moon from the outer reaches of the solar system?<\/p>\n

But on this night, this fine evening at the ballpark\u2013did 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\u2013with no thoughts of T-cells, HHV6 viruses, DHEA, Epstein-Barr, brain fog\u2013or the many years when my pleas to the world of medicine were met with empty stares and grab-bag referrals.<\/p>\n

No, my thoughts were on the joyous, wild game\u2013and 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.\u00a0<\/span><\/p>\n

\n

The other gift is knowing that on days barely navigated\u2013confused, flu-like, and half-awake– the days when CFS humbles me, and drives me indoors\u00a0 <\/span>making me feel as if I might be disappearing—\u00a0 <\/span>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,\u00a0 <\/span>I can let the memory of that day pour over me like honey,\u00a0 <\/span>recalling each moment and how wonderful it felt, knowing that there will be other such days<\/i>.<\/p>\n

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<\/i>\u2013-when the foggy flu and fatigue lift, and health is temporarily restored.\u00a0 <\/span>For me, it\u2019s moments like the perfect ball game, the sound of my nephew\u2019s laugh, or the sublime wonder\u00a0 <\/span>(to steal a line from the Counting Crows) of \u201cthe way that light attaches to a girl\u201d. These things and others like it resonate in a manner that one without chronic illness can perhaps never truly understand.<\/p>\n

…So when I close my eyes, on a grueling CFS day in February, I\u2019ll haul out that night and savor it,\u00a0 <\/span>smiling back at the man-in-the-blood-red moon, knowing that on that <\/i>day, all was well with the world.\u00a0 <\/span>And await that ineffable jewel of a day when it will be again.<\/p>\n","protected":false},"excerpt":{"rendered":"

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 […]<\/p>\n","protected":false},"author":4,"featured_media":984,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"spay_email":""},"categories":[1],"tags":[34,28,32,33,31,26,29,27,30],"jetpack_featured_media_url":"https:\/\/humansofchronicillness.org\/wp-content\/uploads\/2022\/09\/Bill.jpg","_links":{"self":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/983"}],"collection":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/comments?post=983"}],"version-history":[{"count":1,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/983\/revisions"}],"predecessor-version":[{"id":985,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/posts\/983\/revisions\/985"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media\/984"}],"wp:attachment":[{"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/media?parent=983"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/categories?post=983"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/humansofchronicillness.org\/wp-json\/wp\/v2\/tags?post=983"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}