ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
My Fibro story: "The Golden Boy"
Monday 20 December 2010
My Fibro Story: “The Golden Boy” by Ben Ryan
How can I ever forgive myself? I was the golden boy. Not just the smartest kid in the class, but the hardest working, the most driven. For as many hours as there were in the day, I filled them: slaving over school work; pursuing acting professionally; practicing the piano; reading voraciously; doing volunteer work. I wrote my entrance essay to Columbia about how I reconciled coming out as gay with my public image as the perfect kid the other mothers at school would look on with envy. (An admissions officer later told me she’d tacked the essay onto their bulletin board.) The Ivy League was to be a pit stop on my way up into the clouds. The plan was to work for The New York Times within a few years of graduation. I never really doubted this dream would come to fruition. Golden boys get what they want.
On the inside, I was a sensitive, and in many ways delicate, child: plagued by depression and anxiety, not to mention constant headaches, insomnia and episodes of other perplexing physical symptoms. Unfortunately, actively taking care of my health, mental or physical, never really made it onto my priority list. And as much as my mother tried to focus our mutual efforts on my well being—putting me into therapy, prodding me to be more social—she sent a conflicting message through the stiff upper lip she maintained through her own difficult and often lonely life. Descendants of the earliest British settlers, my parents observed the unspoken puritanical rule that it is virtuous to suffer. Hedonism was anathema. In my mind, striving to be a happy person, free from pain, teetered in such a direction. That emotional energy was best spent on something more productive, preferably with a tangible outcome: perfect grades, acceptance letters, a bright future.
In college, I worked every waking hour. There was no such thing as a weekend. I made few friends, none particularly close. Then, the devastating loss of my mother to brain cancer and my own round of mononucleosis formed the one-two punch that would collapse my frenzied drive. The dam broke: pain seeped across my body. It became challenging for me to sit for long periods or to type. Overly-constraining clothing caused searing pain in my hips and lower back. At times I could barely hold a pen, or even stand for very long. My first episode of chronic fatigue left me wondering if I should drop out of school in the middle of my last semester. The promise of holding down a full-time job, much less making it big, faded from view. After graduating in the top quarter of my class, I was consigned to working from home and picking up catering jobs while my classmates soared ahead and took their place in the ivory towers the college dean had promised us during convocation freshman year. There were times when I even had to serve them hors d’oeuvres.
I’m 32 years-old now. I’ve lived with fibromyalgia and chronic fatigue syndrome for over a decade. While I’ve never had a full-time job during that time, I’ve written freelance for many different publications about topics that are important to me. I’ve come close to finishing the novel I started around the time I first got sick. I took up ballet at the tender age of 26, and with a tremendous amount of hard work have become a capable dancer; and at an age when many dancers retire, I’ve started to perform for the first time. I’ve recently gone back to acting and have started to land a few gigs.
But when I see these accomplishments, I’m still inclined to measure them with the golden boy’s yardstick. He thinks I’m ten years behind. He looks around and sees the New York City streets teeming with far more awe-inspiring success stories; wünderkinds impress him the most. There isn’t a place on my résumé where I can crow to him or anyone about what a feat it is to confront a chronic illness and soldier on with virtually no outside support.
The golden boy wouldn’t have let go of his dreams and made do with a revised plan B. He wouldn’t stop several times in the middle of the day to tend to his aches and pains. He wouldn’t get as much sleep as he can. He wouldn’t devote the weekends to decompression. He wouldn’t take time for friends and other enjoyable things that make him happy. He wouldn’t put down his work at three o’clock in the afternoon to go to ballet class and to yoga and to lift weights. The fact that all of those physical and emotional outlets form an effective arsenal against my physical pain is irrelevant to him. I enjoy these activities way too much. And they have too many frivolous benefits, like making me look fit, healthy and attractive; so they must be bad. The golden boy thinks he would’ve been able to keep logging in the hours, never mind the pain. In fact, doing so in the face of pain would’ve made him all the more golden; it is indeed virtuous to suffer.
The golden boy is the one who can’t forgive me: for living here in this revised reality. He deals in fantasies. He doesn’t see context; he sees petty excuses, laziness and, yes, hedonism. Unfortunately for him, though, he’s long dead and gone; like a pair of mythical conjoined twins, he and I were cut in two long ago so that one of us could live. But I imagine I will always wrestle with his ghost.
The above originally appeared here.
blog comments powered by Disqus