Going through life, as I have for the last 21 years, has been difficult to say the least. The most challenging skill for me to develop has been consistent time management. Most people learn healthy time management through school and extracurriculars, and to a point, so did I. Up until high school my time was largely managed for me by my parents and teachers, and due to this reliance on others I maintained good grades and decently good mental health. The sort of independence you get in high school was a huge challenge to me. I was slowly left on my own to manage my own time and rely on myself and my own skills, though unlike many of my peers I didn’t seem to have any natural talent in managing my time effectively. This struggle with time management impacted me in a variety of ways throughout my life but became especially pronounced as the already difficult arena of high school coincided with developing symptoms of a chronic illness, and learning to manage my time became virtually impossible because of how emotionally and physically exhausted I was. Looking at my current self I realize time management is a literacy I have built for myself and is the literacy I value most because of how little I was able to do of it for so long and how far I’ve come since. 

In elementary and some of middle school, I was as “normal” as weird kids can be. I was the odd girl who read fast and talked a lot, I was okay in school, and I was (sometimes too) friendly. I was in Reading Bowl, a Jeopardy style competition where we would read a list of 20 award winning books throughout the year and compete against other schools. My team was good at reading bowl, and I enjoyed it. I relied on my parents to take me to and from school, competitions, soccer practice, and errands they needed to run. I didn’t plan out my days, I had routines set by my parents and school. Starting high school changed that drastically. My parents took me some days, but I usually rode my bike and left home when I needed to. I didn’t have Reading Bowl anymore, and my soccer days were limited due to a torn ACL. I did try out for the soccer team at my high school and made it on the JV team, only to re-tear my ACL in the second game we played. I had surgery again and due to neglecting physical therapy, I wasn’t in the best shape. I gained weight and lost strength. To fill my time I joined theatre, which quickly became a huge passion despite the poor treatment by the drama teacher. Overall, I was struggled to manage coursework, extracurriculars, and my health. I started to have difficulties in my friend group, which exposed an extreme underlying mental health problem for me. Then the pandemic began at the end of 10^th grade and school went asynchronous and stayed online for all of 11th grade. My mental health got significantly worse; my grades dropped, my friendships were decimated, and I lost any time management skills I had developed in 2 years of high school. Fast forward to the end of 11^th grade, I was working on my mental health, it was seemingly getting better, and I had a new friend group that made me feel better about myself. I was still struggling though; I found out I have a thyroid disorder from a hospital visit. I was having huge memory issues, coinciding with high and low emotions. I couldn’t remember classes because I was so checked out on Zoom. After a hiatus from school in 12^thgrade, I returned for my last semester. Luckily, I hadn’t really fallen behind because I already had most of my class requirements. I was doing much better and got relatively good grades. I graduated and got a job over the summer. I picked a school and at the end of the summer I moved out. Against my parent’s wishes, I decided to get a dog, to have a reason to be aware of time, because I’d have a dependent. This had the opposite result I had intended, making school harder than it needed to be. I started noticing how bad my sleep problems were, I was sleeping through classes that started at 10:00am. Nothing woke me up: not alarms, not even my dog barking and whining. Ultimately, I ended up leaving school. I gave up on continued education and got an internship at a local theatre. I eventually got a job, only to get fired because I would oversleep and arrive late. I had no control over my sleep, and it was a problem that was quickly taking over my life. I got another job, my year-long internship ended at the theatre, and I threw myself into working. In December of 2023, I went to a sleep specialist, and after lengthy testing, I was diagnosed with narcolepsy in January. I started taking medication and my sleep improved drastically. I was able to apply to a local University and start taking a class, choosing to start with just one so I wouldn’t exhaust myself. I find that I’m less overwhelmed now than I was at my previous school, I have easier focus, and a better routine. I wake up naturally most mornings, I bike from home to school on a bike I saved up for from the job I had for over a year. Treating my Narcolepsy has changed my life, but I am still so aware that the progress can be stopped, and I can fall backwards if something were to change with my treatment. I can’t wholly rely on medications to solve my problems, there must be structure that won’t fall apart. 

Over the years I’ve struggled with burnout, constant fatigue, time management, and finding an organizational system. I’ve learned how to prioritize different tasks at different times and read my symptoms to know what I’m capable of in each moment. I know when to ask for help, step back, and rest. For those of us with chronic illness, managing our time can be harder, or at least different from those without health struggles. My favorite method of explaining this difficulty was introduced to me by my friend Billie, who lived in the same building as me when I went to college the first time. They live with symptoms of a chronic illness, and it was hard for me to understand why they didn’t want to hang out all the time. The way they explained their energy levels was with The Spoon Theory, coined by Christine Miserandino. Essentially those with chronic illness start their day with a certain number of spoons, usually a small number, but it can depend on the person, what their illness is, and whether it’s a good day or a bad day in terms of symptoms. In the book, “Beginning with Disability”, Miserandino introduces the idea in the chapter “The Spoon Theory”. She explains the origin of spoon theory: at a dinner with her friend, she gathers a pile of 12 spoons, telling her friend to explain her routine from the beginning of the day to the end. For each action, getting out of bed, showering, getting dressed, and eating breakfast, she took a spoon from the friend’s pile. By the time she got to work, half the spoons were gone. She explained that each choice would deplete another spoon, and once you were out of spoons it could become dangerous to continue with the day. In the book, Miserando states: “I have learned to live life with an extra spoon in my pocket in reserve. You always need to be prepared” (Miserandino 177), meaning sometimes you must opt out of activities; no matter how fun or important they may be, you simply cannot waste a spoon. You must be prepared; in case something comes up. She states something at the end of the text that really resonated with me, “When other people can simply do things, I have to attack them and make a plan as if I am strategizing a war. This lifestyle is the difference between being sick and healthy. It is the beautiful ability to not think and just do.” (Miserandino 178) For me to understand when Billie needed to not be bothered, we made a cutout of a spoon for their door, it was striped with 7 colors, and they would put a clothespin on the color correlating the level of spoons they had. This was helpful to guide my interactions and understand their experience. In fact, I was able to apply spoon theory to my own experience. What I formerly referred to as my social battery was better explained using spoon theory, and as my narcolepsy got significantly worse, my spoons decreased. As I started getting treatment and created a routine to prioritize my sleep, the symptoms got better, and I found myself with more spoons in my reservoir. 

Going forward, I know in theory how to prioritize my time regarding everyday situations and routines. The next important step to master is adapting my time management skills for unexpected situations, or just general large changes, even planned ones. Some changes that would affect how I manage my time that I’ve considered would be; my living situation changing, losing my job, changes in my ability to bike to school and work due to my bike breaking or an accident, a health situation with myself or a loved one, or big changes in my relationships or friendships. I don’t necessarily have a plan for all these possible situations, but I have a general outline of how to react to changes in routine, no matter what they are. For example, I prioritize school over work, because of the long term affect of dropping out of school a second time is much worse than leaving a job that I don’t plan to have forever. 

Time Management is an important literacy for me because of how a lack of it impacts my ability to function. Having a chronic illness means that time management is vastly important to my daily functioning. It is a literacy for those with chronic illness because without time awareness, illnesses would take over both mind and body and life would not be worth living. The introduction to Tanisha Jowsey’s Narrative Review, “Time and Chronic Illness,” sums up my point perfectly. ‘‘Although chronic illnesses have different physiological, biological, and pathological properties, they share a common thread—time. Severe chronic illnesses induce different temporal rhythms and different relationships to time than are experienced by the healthy person, or even the person with acute illness.” (Jowsey 1093) Time is a skill that is harder to maintain for those with chronic illness, and, for me, illiteracy in time is not an option.

Works Cited

Jowsey, Tanisha. “Time and Chronic Illness: A Narrative Review.” Quality of Life Research, vol. 25, no. 5, 29 Oct. 2015, pp. 1093–1102, https://doi.org/10.1007/s11136-015-1169-2. 

Miserandino, Christine. “The Spoon Theory.” Beginning with Disability, edited by Lennard J. Davis, Routledge, New York, NY, 2018, pp. 175–178.