Grace

@gracegalandreal
I am a stay at home mom. Although my children are all grown up, I am here to look after my grandson. My daughter is a wonderful single mom. I am homeschooling my grandson during Covid. I have been married for 32 years. I have a brain injury. The anxiety has been part of my life ever since I can remember.
B.L. Acker

If 'Spoon Theory' Doesn't Work for You, Try the Alternative 'Arcade Theory'

In 2003, Christine Miserandino constructed the Spoon Theory to illustrate the limitations she faced living with lupus. According to her Spoon Theory, she begins each day with a finite number of spoons, each representing a percentage of the physical and mental energy she has for the day. Small tasks may take one spoon, larger tasks three or four. Once all the spoons are used up for the day, she is done. There are no more spoons, there is no more energy. The Spoon Theory has been widely embraced and adopted by the chronically ill community because it helps illustrate how difficult it can be to meter out our time and energy when it is such a finite resource. As much as I adore the theory, though, for me it didn’t paint a full picture of not only my personal limitations, but also how those limitations play out with my peers and in everyday life. I imagine it to be more like going to the arcade. All around me, there are kids with pockets full of change. How much I have to play with, though, varies by the day. On some rare days, I feel really lucky and I might have five dollars. While that might not seem like a lot to most people, for me it feels like a fortune. On other days, I only have a dollar or two. On rougher days, I might have nothing at all, meaning I either sit out and watch others from the sidelines or I stay home altogether. Every game costs something to play. There are many simple games that cost a quarter, and harder ones that might cost two. The best games are also the most costly. If I choose to take on a bigger game that costs four quarters, that might be the only game I get to do for the day. The kids who always have a lot of change are able to play a lot of games every day. They are more adept at playing these games because they’ve had a lot of practice. I struggle, however, with even some of the easier ones because I don’t play them as often or for as long. So what comes naturally to others is often a struggle for me. I often feel clumsy and inept in comparison. I sometimes even worry others will see my struggles as a joke because I know some people are cruel that way. Perhaps worse, they might pity me. I consider pity worse because I’m often proud of how well I manage to do despite my lack of quarters. I wish just once they knew how hard I try and would cheer me on, instead of laughing or feeling bad for me. I always try to do my best, but I’m always self-conscious about how my best will be perceived. Sometimes my energy runs out sooner than anticipated. I put in a quarter, hit start, make a silly misstep and lose almost immediately. Other times, I pop in my quarter and find myself doing better than imagined, playing longer than expected. But the fact is I never know how long my playtime will last until I pop the quarter in. I go in always hoping I’ll get to play long enough to make it to the end, but I brace myself for those times I barely get started before “GAME OVER” flashes on my screen. All the other kids at the arcade with pockets full of change never seem to understand why I can’t just take out more quarters and keep playing. It’s embarrassing to admit to them that I just don’t have it like that. I don’t have any extra money in my reserves. What I have is all that I have, and I feel lucky to have even that. So I take my time and pace myself. I take stock of the games at the arcade and I carefully pick the few I really want to focus on each day. I might choose one I haven’t done in a while that I’d like to get better at, or another that I really enjoy. I don’t rush through the games I choose because I know when my quarters are gone, I am done for the day. And sometimes, if I’m really lucky, I come across another kid who actually gets it and realizes why I’m not racing through the arcade playing every game in sight. They might suggest we each put a quarter in and work together in a two-player game, because a lot of monsters are easier to defeat with help. Those are honestly some of the best days, because not only do I not have to face those battles alone, but because I have someone at my side who truly seems to understand and wants to help us both succeed. I love going to the arcade. I love being a part of the world and being able to participate in life. But at the same time, it can be bittersweet because every day I go out with my small handful of quarters, I’m reminded of the fact that I’ll never have as many quarters as the rest of the kids. I try to remain positive and be grateful that I have any quarters at all, but it’s hard because it doesn’t feel fair. Why does everyone else seem to have so many, while I have to scrounge and fight to wrangle up the little I have each day? Beyond that, I dread the days I have to stay home because I don’t even have a single quarter to play, because those days I feel like I have no place in the arcade, or in the world itself. On the bright side, sometimes there are ways for me to get a few extra quarters. Seeing my doctors regularly, taking my medication, taking better care of myself through diet and exercise — these things are like doing chores around the house or odd jobs around the neighborhood. They might not feel particularly fun, and they take time away from the time I can be at the arcade doing other things, but keeping up on those chores and odd jobs will eventually pay off and I might find myself with a little more money, and energy, to spend. Even more importantly, I gain a sense of accomplishment, and can be proud of myself for following through with self-care. While the spoons and the quarters are both a finite amount, I feel like the similarities end there. My arcade theory acknowledges that even that finite number we begin with varies day to day, and that there is an unpredictability to how long our energy will last. It also acknowledges the shame and discomfort we often feel for being different, having less, and being able to do less. The arcade scenario resonates more with me because it also considers the judgment we face, the benefits of working with others, and the rewards of self-care. I feel it paints a more complete picture of the limitations you face when you are chronically ill. As hard as it is to function when you are chronically ill, it is harder still to get others to understand.  Whether a finite number of spoons, or quarters at the arcade, those with chronic illness understand all too well the daily limitations we face.  Hopefully, if we come up with enough different examples and explanations to illustrate our struggles, we can finally help others to understand as well.

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