Years ago, despite how I was raised within the able-bodied community, I joined in the disability community via a group on Facebook. Ableism wasn’t the only term I learned, but there is also the heavy usage of the word spoons. Of course, there was extreme confusion, but I eventually came to learn more about how spoons is an analogy for energy. Whenever someone with a chronic disability, such as cerebral palsy, mention the term spoons, it’s easy to get that they live the spoonie life.
A spoonie can refer to someone who has a chronic illness. While learning of spoons within a group on Facebook, the Spoon Theory by Christine Miserandino, who lives with Lupus, helps to explain the term for spoons. For every person with a chronic disability, they have a limited number of spoons regardless of the tasks that they have to complete each day. Due to having spoons, it is crucial to plan every day to see if everything can be handled or if something can be worked out. Depending on how many spoons a person with a chronic illness has for each day, there is a slight chance that something can be accomplished.
I live with cerebral palsy and also live the spoonie life. The spoon theory was not discovered until years after being called lazy when I do not do anything or wait something out until the last minute. I am also nocturnal and would tend to do anything and everything when it is so late. When I was in college, I struggled a lot due to the amount of spoons I have each day; I basically would not do anything after a long day of classes. Now that I have graduated, I deal with a pretty busy schedule and it is unlike what I have had to deal with in a day of college life.
My busy schedule now consists of having to deal with phone calls to SCAT, physical therapy, working part-time, and therapy. On my free days and the weekends, laundry, chores, appointments, and writing would be added in. Most days, I plan on what is going on for each day, but there are some days when I do not have to plan so much. If I do want to have some fun, I have to plan so far in advance not only to work with someone else’s schedule but also to be sure that it wouldn’t be a day when I wouldn’t spend so many spoons. I am lucky if I do have spoons left over, but the difficult part of being a spoonie is to have to constantly make choices.
The able-bodied community is fortunate to have the freedom that most spoonies do not have, but at the same time, they tend to take things for granted. Spoonies can only do so much in their daily life, and that depends on what we can handle. We all wish that we can have an endless amount of spoons, but living with a limited amount of spoons each day is something we have to work with along our chronic disability.
