In her 2003 essay, Spoon Theory, Christine Miserandino describes what it feels like to live with chronic illness. She tells the story of being with her friend in a diner when the friend asked her what it felt like to have Lupus. Christine went around the diner and collected twelve spoons from nearby tables. She gave the spoons to her friend and asked her to go through everything she does in a typical day. For every difficult task her friend named, Christine took away a spoon. By the time her friend said “go to work” she had six spoons left. She had spent half of her spoons on what she viewed as normal morning activities like showering, getting dressed, and brushing her teeth, and had to conserve the rest of her spoons for the day. She had to prioritize what she actually needed to do, and bypass the rest of her “necessary” tasks.
When Miserandino initially wrote her essay on Spoon Theory, she only intended to explain what it was like to live with an invisible illness. However, people with all kinds of different disabilities latched onto this metaphor, as it gave us a language that we could use to describe how unpredictable and sometimes insufficient many of our energy levels are throughout every day. For example, it is much easier for me to say “I don’t have the spoons for that phone call today, it’ll have to be tomorrow” as opposed to “I’m too tired to call my insurance company (yes really) and finish all of my homework and I have to finish all my homework, so my medical supplies need to wait one more day.”
Spoons are a convenient shorthand used to describe units of energy in a way that most people understand, but the metaphor can be changed to many different things. For example, I’ve seen “spoons” replaced with “health” like in a video game, in an attempt to communicate the idea more clearly to younger people. The symbol itself doesn’t matter, just the idea. One metaphor that I have felt resonated especially strongly with me is the idea of being out of breath. My disability affects my lungs pretty noticeably, so I have a quiet voice and I breathe more shallowly than most people. In fact, recently I have begun to notice that I have difficulty reading long, complex sentences out loud without pausing for a breath in the middle. This is similar to the idea of spoon theory, in that I just run out of breath before other people do, in the same way that I run out of energy.
For many who are healthy and non-disabled, waking up from a good night’s sleep gives them the freedom to do basically anything that day. More importantly, regular daily activities do not take away from their stores of energy in any significant way. Taking a shower does not prevent them from running errands and vice versa. From where I sit, the energy levels of many of my friends look boundless.
When I was younger, I had a really hard time accepting that I could not always keep up with my peers. I resented that limitation more than many of the other ones that my disability has created in my life. I often still have to leave events early or turn down invitations that I know I would not be able to physically handle well when also considering my other tasks for that day. I worry about how that looks, and I already have enough trouble feeling socially accepted; I don’t want people to think I don’t want to spend time with them. On the contrary, I try very hard to have the spoons in reserve to do fun things with my friends. But I have a lot of trouble looking at my limitations objectively and I am very hard on myself when I fall short of my own expectations.
And that brings me to possible changes to this blog. I really love writing articles, but I think during the school year it may not be able to happen as consistently as I want it to. However, I have a lot of ideas about different kinds of content that don’t cost me so many spoons. I still have plans to continue writing articles, but I would like to diversify a bit. First, I would like to start making some videos. Secondly, I think it may be easier and more effective to live-tweet my thoughts as I watch movies that feature positive or negative representations of disability, rather than always writing a long review like I did for X-Men. I think this would allow for a more unfiltered view, plus you can participate too! Please check out the poll below to let me know what you would prefer to see from me, and don’t worry! I won’t be disappearing anytime soon! This is just to help me create better content more consistently and to learn what all of the wonderful people who read my blog (that’s you) would prefer to see from me.