Eating Cereal With a Fork

I first heard about Spoon Theory at an MBLGTACC (Midwest Bisexual Lesbian Gay Transgender Asexual College Conference) keynote speaker event in 2020. Activist and Poet Kay Ulanday Barrett brought life to their story through poetry. I hung onto their words because I saw their story unfold. I purchased their book “More Than Organs”. Their poem “What are alarm clocks when I got spasms?” is a beautiful reflection of chronic illness as a disability and its impact. This is when I learned of spoon theory.

The Spoon Theory written by Christine Miserandino puts into words the experiences many people living with a disability go through day today. Growing up without this sense of guidance, I used my spoons up constantly. Although young and full of ambition, I never recognized how my ableist habits did not encompass the grossly different health determinants I carried with me. Miserandino outlines the choices people with disabilities have to make, unlike how “the healthy have the luxury of a life without choices”. I felt defensive reading the article at first. As a “mostly-able-bodied” individual, I make choices all the time! Then, I started to take note of the “weird” things I would do throughout the school day. I always scheduled bathroom breaks and communicated to my teachers that “yes, this is an ‘emergency’” when they would refute my necessity to go to the bathroom. I still find myself hopping around people to hear them better. Because of the unilateral nature of my hearing loss, I make deliberate choices to maneuver my body on the side where I can hear people. A frequent response I receive is “Um, ok, you didn’t need to do that.” However, for everyone who does things not because they have the choice to do, but because they have to, know exactly what I mean. This is when my tone toward Miserandino’s story changed. No longer did I feel defensive, but now in a pool of admittance to visualizing how many spoons I have.

Spoon theory in a nutshell describes a quantitative system of people associating a particular number of spoons with the amount of energy and tasks they can accomplish in a day. I cannot do justice to Miserandino’s articulate work, so I will let you read their story yourself, but I will contextualize it for my routine. Today, I woke up with 7 spoons. Normally, I get 8 hours of sleep so I can have the most energy throughout the day. After eating breakfast, I receive a message from my doctor that the medication I am supposed to start has been denied by my insurance. Again, I spend time on the phone, trying to ease my nerves about not being able to afford the medication without insurance and what life will look like going forward. A little much for a morning, so that is 3 spoons. There are 4 spoons remaining. I miss part of my lecture because I have to use the bathroom for longer than I expected. Another spoon went. There are 3 remaining spoons. I met with one of my favorite advisers, spending time talking about my future career plans. I am excited. Even so, the logistical foreman in my head tried to calculate if I will need to make changes to my doctor's appointment or whether I will need time to schedule a medical procedure. This takes away 2 spoons. There is 1 spoon remaining. What can I do for the rest of the day? There are problems to solve, people to face, food to eat, a life to live. I shelter my typical resilience and hold onto that last spoon. I refuse to take spoons from tomorrow’s stock because that would mean I would have less energy to face the day.

The choice of my last spoon and what to expend energy on is never easy.

The choices I make carry a particular weight. There is a necessity to slow down. I tell people of hitting my absolute low when all of my spoons melt in my hand. Miserandio describes it here,

“[It’s] hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted [my friend] to feel that frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count ‘spoons’”.

How Miserandio staggers between want and need is something many people living with a disability experience every day. Our spoons are not only a powerful metaphor to explain our energy expenditure, but to clearly articulate how we feel with able-bodied people. I recognize this might be beyond the ability of many to disclose their disability to others. Nevertheless, this metaphor is a strong tool in our toolbox when we need it most.

It was around 11 am. I felt my chest tighten. My forehead was rock solid, feeling like my brain was swollen. I began to cry. My friend and I were standing in the middle of the hallway, where he was putting away his trumpet. We were going to lunch with a group of my friends. He witnessed my sobbing. My back was hunched over, not able to keep upright. There were numerous reasons why my tears followed that day. My friend didn’t need an explanation, he could tell this was exhaustion. All the spoons disappeared. After a few minutes, I collected myself. My thoughts were all over the floor along with my school bag. My friend’s eyes gazed over a body that was experiencing deep pain but couldn’t piece together how I was collecting myself.

Miserandio said, “‘I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”. I pulled from somewhere somehow, a spoon hidden in reserve. I went to lunch that day.

Spoon theory is a starting point. It does not encompass our entire being, but it does put into perspective the importance of valuing our time and energy. I unconsciously count my spoon throughout the day, but still, struggle to express to others when I cannot do something.

We may not have the choice to do things we want, especially if we don’t have a spoon to eat our cereal with.