LJ Idol Season 7 Week 16 - Be Like a Bird
o/` " Be like a bird, who, halting in her flight
On a limb too slight, feels it give way beneath her;
Yet sings, sings, knowing she has wings;
Yet sings, sings, knowing she has wings. o/`
-- "Be Like a Bird" performed by Libana, adapted from the poem by Victor Hugo
Most weekends we adhere to a family tradition: everyone goes to bed at a decent hour Friday night and the next morning, well rested, we tumble into the showers for a cursory scrubbing before getting dressed and heading out. These trips usually combine business with pleasure: we purchase things which have been used up since the last grocery run, we shop for elements of household projects, and we browse for new games, puzzles, stuffed animals, or craft items. Our business completed, and assuming we purchased no perishables, we meander the less traveled roads snapping pictures and engaging in philosophical discussions or sharing group dreams. Between the two parts of the journey, however, lies the real bliss: we eat out.
Eating out is a treat rather than an expected occurrence. The rising cost of living combined with finally having someone in the family who could actually cook decent meals meant we ate most meals at home. On the rare and special occasions when we did not, we always at at a moderately expensive family establishment. If we're out and about early enough, we end up at IHOP; if we're too late for breakfast, the group consensus generally votes for Chili's. So it happened this particular weekend and I found myself gathered around a table munching on tortilla chips fresh out of the fryer while catching up with my family's various exploits. Mr. Shapeshifter, whose dearest love is food in general and eating out in particular, sat quietly drawing concentric rings with the condensation on his mug of strawberry lemonade. He didn't say much, which didn't surprise me because he never has been much of a talker, but he also wasn't messing with his Blackberry and periodically interjecting odd fragments of information into the conversation as was his custom. Diagenou, whose profession involves the careful observation and tabulation of human behavior, noticed first. He broke of his conversation with the waitress, something about Mardi Gras customs, and playfully prodded Mr. Shapeshifter with a finger. "Hey, Fox-boy, what's the matter with you?" His lopsided, sarcastic grin had been calculated to wring a response from even the most stoic of people, and that hardly described Mr. Shapeshifter. "Did you drop your little Blueberry in the toilet or something? It's been a while since you tried to bore us with some obscure factoid about how moths fart or something similar."
Mr. Shapeshifter shrugged away from the good natured poke as though it hurt and shut his eyes. "It's a Blackberry, Dee, and Nothing's wrong," he muttered, "I'm just low on spoons today, I guess."
"You work too hard," I said, and patted his hand. "We really do need to find you a decent bed." When Diagenou and Dorie moved in, our sleeping arrangements got shuffled. I had stayed in the master bedroom with our queen sized bed and its specialized mattress designed to support my failing discs; Diagenou, because of his injuries and the need to monitor them, most frequently slept beside me. Dorie had her own twin bed in her own room and Mr. Shapeshifter, claiming he wanted to relive his bachelor days, had chosen a decrepit brown couch in the recreation room on which to curl up in the evenings. The three of us had repeatedly urged him to use some of the household funds to purchase either a bean bag or a futon or at least another couch with a fold-out bed, but he'd refused.
The waitress, returning with our order and overhearing the conversation, chimed in, "Oh, are we talking about the Spoon Theory? My mother has lupus, so I know all about it." Her eyes focused squarely on me, sitting in the wheelchair, and on Diagenou, still skeletally thin and recovering from major surgery. "I'm sorry." To Mr. Shapeshifter: "You shouldn't joke about such things, it's very difficult to be seriously ill when you don't look it."
A full five minutes of silence reigned at our table afterward, none of us certain what to say. I suddenly felt angry, angry that someone would assume that because Mr. Shapeshifter didn't look as badly off as the rest of us he couldn't possibly understand what it meant to feel that bad, and angry at myself. There had been a time when the Spoon Theory had been useful in explaining what was happening to me when I hadn't looked ill. Now, however, I obviously did look as though I belonged in that wheelchair and it pissed me off. I wanted to stand up and shout to the entire dining room, "I AM NOT MY DISEASE!" It occurred to me that something I'd been using for inspiration had become a crutch and an excuse, a piece of self serving indulgence which placed me squarely where I did not want to be --- in the 'special' category --- and discounted the suffering of others.
"Well," said Dorie, breaking the silence, "that was rather awkward."
"It was none of her fucking business," growled Diagenou. By way of apology, he ceased his friendly tormenting of Mr. Shapeshifter and awkwardly slapped him on the back. "It's all right, Fox-boy. We understand."
"Why shouldn't everyone understand?" I mused aloud. "It's not as though those circumstances are unique to someone with a chronic condition. Anyone can feel they're running short of time, energy, and effort." Mr. Shapeshifter had been putting in eighty hour weeks, sometimes working long into then night and then having to make the hour and a half commute into work where he would put in another eight to ten hours before the cycle began again. Since he was classified as both a computer specialist and as salaried management, he received no compensation for those hours. He just got more tired and more run down.
I'd carried a copy of the Spoon Theory around with me ever since I'd been diagnosed with fibromyalgia. Now, I dug it out and the utter presumptuous, the facetiousness of the words struck me:
.... the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.
"No," I said, pointing the offending paragraphs out to my family, "that simply isn't the case. No one has a life without choices and no one has unlimited possibilities. Even healthy people struggle with things like whether there's time and energy to shower or having to cut out a birthday celebration because you're too tired to attend after working a long day."
"You don't make all your decisions based on your disease process either," Dorie pointed out, tapping the crumpled bit of paper. "That's exactly what this advocates, you know."
That was true. I did have to, on some days, carefully plan out what I was going to be doing if I wanted to get things accomplished. Our weekend routine, for instance, was planned around Saturdays because that night I would have to take my chemotherapy shot. Everyone knew by now that the effects of the shot were so debilitating we couldn't plan on going anywhere or doing anything the following Sunday. Similarly, on the days when I woke up feeling as well as possible I knew I had to get as many things done as I could but also to pace myself or I'd be paying for it for the next three days. I still didn't see how this differed significantly from a healthy person's thought processes. The only difference might be that I had learned to pace myself, had learned to slow down when I needed to do so, and that I'd learned to take each day as it comes and enjoy what it offers even if the pickings were slim. That, too, was something a healthy person could learn and I was certain that many did.
"I don't think I need this piece of junk," I said and crumpled the paper in my fist. I tossed it high in the air to Diagenou, who snatched it with his left hand and then slam dunked it into the wastebasket at the server's station.
We resumed our weekend traditional routine, revised to allow for poor Mr. Shapeshifter's fatigue, and enjoyed the day.
I am not my disease.
It's powerful food for thought.
On a limb too slight, feels it give way beneath her;
Yet sings, sings, knowing she has wings;
Yet sings, sings, knowing she has wings. o/`
-- "Be Like a Bird" performed by Libana, adapted from the poem by Victor Hugo
Most weekends we adhere to a family tradition: everyone goes to bed at a decent hour Friday night and the next morning, well rested, we tumble into the showers for a cursory scrubbing before getting dressed and heading out. These trips usually combine business with pleasure: we purchase things which have been used up since the last grocery run, we shop for elements of household projects, and we browse for new games, puzzles, stuffed animals, or craft items. Our business completed, and assuming we purchased no perishables, we meander the less traveled roads snapping pictures and engaging in philosophical discussions or sharing group dreams. Between the two parts of the journey, however, lies the real bliss: we eat out.
Eating out is a treat rather than an expected occurrence. The rising cost of living combined with finally having someone in the family who could actually cook decent meals meant we ate most meals at home. On the rare and special occasions when we did not, we always at at a moderately expensive family establishment. If we're out and about early enough, we end up at IHOP; if we're too late for breakfast, the group consensus generally votes for Chili's. So it happened this particular weekend and I found myself gathered around a table munching on tortilla chips fresh out of the fryer while catching up with my family's various exploits. Mr. Shapeshifter, whose dearest love is food in general and eating out in particular, sat quietly drawing concentric rings with the condensation on his mug of strawberry lemonade. He didn't say much, which didn't surprise me because he never has been much of a talker, but he also wasn't messing with his Blackberry and periodically interjecting odd fragments of information into the conversation as was his custom. Diagenou, whose profession involves the careful observation and tabulation of human behavior, noticed first. He broke of his conversation with the waitress, something about Mardi Gras customs, and playfully prodded Mr. Shapeshifter with a finger. "Hey, Fox-boy, what's the matter with you?" His lopsided, sarcastic grin had been calculated to wring a response from even the most stoic of people, and that hardly described Mr. Shapeshifter. "Did you drop your little Blueberry in the toilet or something? It's been a while since you tried to bore us with some obscure factoid about how moths fart or something similar."
Mr. Shapeshifter shrugged away from the good natured poke as though it hurt and shut his eyes. "It's a Blackberry, Dee, and Nothing's wrong," he muttered, "I'm just low on spoons today, I guess."
"You work too hard," I said, and patted his hand. "We really do need to find you a decent bed." When Diagenou and Dorie moved in, our sleeping arrangements got shuffled. I had stayed in the master bedroom with our queen sized bed and its specialized mattress designed to support my failing discs; Diagenou, because of his injuries and the need to monitor them, most frequently slept beside me. Dorie had her own twin bed in her own room and Mr. Shapeshifter, claiming he wanted to relive his bachelor days, had chosen a decrepit brown couch in the recreation room on which to curl up in the evenings. The three of us had repeatedly urged him to use some of the household funds to purchase either a bean bag or a futon or at least another couch with a fold-out bed, but he'd refused.
The waitress, returning with our order and overhearing the conversation, chimed in, "Oh, are we talking about the Spoon Theory? My mother has lupus, so I know all about it." Her eyes focused squarely on me, sitting in the wheelchair, and on Diagenou, still skeletally thin and recovering from major surgery. "I'm sorry." To Mr. Shapeshifter: "You shouldn't joke about such things, it's very difficult to be seriously ill when you don't look it."
A full five minutes of silence reigned at our table afterward, none of us certain what to say. I suddenly felt angry, angry that someone would assume that because Mr. Shapeshifter didn't look as badly off as the rest of us he couldn't possibly understand what it meant to feel that bad, and angry at myself. There had been a time when the Spoon Theory had been useful in explaining what was happening to me when I hadn't looked ill. Now, however, I obviously did look as though I belonged in that wheelchair and it pissed me off. I wanted to stand up and shout to the entire dining room, "I AM NOT MY DISEASE!" It occurred to me that something I'd been using for inspiration had become a crutch and an excuse, a piece of self serving indulgence which placed me squarely where I did not want to be --- in the 'special' category --- and discounted the suffering of others.
"Well," said Dorie, breaking the silence, "that was rather awkward."
"It was none of her fucking business," growled Diagenou. By way of apology, he ceased his friendly tormenting of Mr. Shapeshifter and awkwardly slapped him on the back. "It's all right, Fox-boy. We understand."
"Why shouldn't everyone understand?" I mused aloud. "It's not as though those circumstances are unique to someone with a chronic condition. Anyone can feel they're running short of time, energy, and effort." Mr. Shapeshifter had been putting in eighty hour weeks, sometimes working long into then night and then having to make the hour and a half commute into work where he would put in another eight to ten hours before the cycle began again. Since he was classified as both a computer specialist and as salaried management, he received no compensation for those hours. He just got more tired and more run down.
I'd carried a copy of the Spoon Theory around with me ever since I'd been diagnosed with fibromyalgia. Now, I dug it out and the utter presumptuous, the facetiousness of the words struck me:
.... the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.
"No," I said, pointing the offending paragraphs out to my family, "that simply isn't the case. No one has a life without choices and no one has unlimited possibilities. Even healthy people struggle with things like whether there's time and energy to shower or having to cut out a birthday celebration because you're too tired to attend after working a long day."
"You don't make all your decisions based on your disease process either," Dorie pointed out, tapping the crumpled bit of paper. "That's exactly what this advocates, you know."
That was true. I did have to, on some days, carefully plan out what I was going to be doing if I wanted to get things accomplished. Our weekend routine, for instance, was planned around Saturdays because that night I would have to take my chemotherapy shot. Everyone knew by now that the effects of the shot were so debilitating we couldn't plan on going anywhere or doing anything the following Sunday. Similarly, on the days when I woke up feeling as well as possible I knew I had to get as many things done as I could but also to pace myself or I'd be paying for it for the next three days. I still didn't see how this differed significantly from a healthy person's thought processes. The only difference might be that I had learned to pace myself, had learned to slow down when I needed to do so, and that I'd learned to take each day as it comes and enjoy what it offers even if the pickings were slim. That, too, was something a healthy person could learn and I was certain that many did.
"I don't think I need this piece of junk," I said and crumpled the paper in my fist. I tossed it high in the air to Diagenou, who snatched it with his left hand and then slam dunked it into the wastebasket at the server's station.
We resumed our weekend traditional routine, revised to allow for poor Mr. Shapeshifter's fatigue, and enjoyed the day.
I am not my disease.
It's powerful food for thought.