Grabbing twelve spoons off the tables around them, she pressed them into her friend’s hands, then asked her to list her daily tasks. Christine stopped her almost immediately to point out that getting out of bed and preparing for work actually involved many tasks. And each one involved the surrender of a spoon (and she was going gentle on her.) The friend was down to six spoons before even getting to work! With new awareness, she asked, “How do you do it?” Spoon Theory was born.
Miserandino writes:
“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… energy to do whatever they desire… they do not need to worry about the effects of their actions.”
Like her, giving up my belief in a healthy life and endless energy was really hard. “Slow” became my lifestyle, one that I resist at least weekly. In writing this post I ponder anew Miserandino’s question, “Do you know how many spoons people waste everyday?”
I encourage you to read her whole essay. It’s a quick read. (A CNN article last month about long Covid in children used the analogy of a bucket. Same principle: a limited amount of energy that once gone leaves on depleted.)
Being sick isn’t just about illness. It’s about the life one doesn’t have anymore. It’s about surrendering the freedom to do and be as one chooses without consideration of health consequences. Sometimes I used to skip lunch or stay up late reading. Now I know that these and just about anything – biking, keyboarding, buying groceries, fixing dinner, (cleaning up afterward), singing – all take from the day’s energy. I have to choose, knowing that I cannot accomplish half of what I’d like to do. Overdoing it can set me back for days or weeks.
It’s funny that I’d heard of Spoon Theory long before I read it but I didn’t have the time or energy to look into it. Before I knew I was sick, I was clueless. Now I file it all under the heading of “What I Didn’t Know.”
New York Times columnist Ross Douthat wrote about his 5-year struggle with Lyme disease in his new book The Deep Places: A Memoir of Illness and Discovery. I read about his motivation for writing about his journey in an interview he gave. It really resonated with me.
"There is a sense, when you haven’t lived through this kind of experience yourself, that having a chronic illness is just a slightly worse version of people’s everyday struggles. People with chronic illness will report that they have headaches or sleeping problems or fatigue and people who aren’t sick hear them and think, “Well, that sounds like what everybody goes through sometimes.” And this then feeds into the sense that people with chronic problems are malingering, that they’re obsessed with their own symptoms, that they’re hypochondriacs, and all these kinds of cliches and stereotypes.”
Yes, that.
I feel guilty about going on leave and about not working and about taking so long to complete just about anything. And while admitting that many people are more aware than I was, knowing my own ignorance I suspect that others think I’m making a big fuss over nothing. And I don’t like it.
I have a lot more energy than I did two years ago. I’m healing. What will my best life be like in five years? I don’t know. But then, none of us do.
Someone challenged me last week about my “Life is good” mentality. They’re going through a rough patch. I get it. Such an attitude doesn’t work for everybody. There are days it doesn’t work for me. But neither does despair or long-term anger. This is the day I have, the day you have. How will we live it?
I’ll leave you with a couple thoughts to ponder. Ask yourself:
- How do I respond when I learn that someone has a chronic illness? Especially if they look healthy. Especially if I see them doing ordinary or even fun things.
- How many spoons do I waste?
No comments:
Post a Comment