I’m still recovering from my SRS brain radiation. The first few days were as nothing at all had happened – I was shocked since it seemed that something that is physically damaging one’s brain, the single structure responsible for the design of one’s existence and one’s personhood, would carry with it some repercussions. The following week, I noticed I was a little more tired than usual, but my mom was staying with us, so I was able to mitigate much of the fatigue with a couple of extra hours of sleep each morning.
Which brings me to today, almost 2 weeks post radiation. I woke up yesterday morning with a raging headache, and my whole body felt like a bag of sand. I was groggy and irritable, but forced myself to get up and begin moving around by about 11:30 am, after sleeping for nearly 14 hours). As the day went on, my headaches got worse and more localized. They were like flashes of light in my skull, flaring and then fading out quickly. By the evening, I began to get concerned about them and resolved to call my radiation oncologist the next morning if they hadn’t resolved. They hadn’t, and the radiation oncologist’s office recommended that I go back on a course of steroids for the next few days. They believe that it is likely localized brain tissue swelling, a common side effect of the brain radiation, and often relieved by the steroids. It’s another bump in the road, a hurdle, and a challenge to navigate this new normal on top of everything else. As I am recording this, I’m actually struggling to keep my eyes open, and once I finish, I’m going to try to lie down again – although often I struggle with insomnia due to the steroids.
This is life with an ongoing illness, whether you term it chronic, incurable, or terminal. At any given point in the day, life taps you on the shoulder and asks you to spin the wheel – you might be feeling great, then all of a sudden…you aren’t, and have to recognize those limitations or pay dearly for them. On the blog “But You Don’t Look Sick” Christina Miserandino pioneered “Spoon Theory” as a way to analogize ongoing health challenges. Wikipedia defines Spoon Theory as “a neologism used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness” but for those actually living as “Spoonies” as those with ongoing health challenges often call themselves, it provides a lens for others to better understand the challenges we navigate at any given moment. Our illnesses so often exist with a cloak of invisibility, showing us what strengths that belie our weaknesses, our struggles, our limitations.
My guest today is Courtney Pest, who was diagnosed with acute lymphoblastic leukemia at age 14. She missed her entire freshman year of high school due to her cancer treatment and proceeded to go through chemotherapy for nearly three years. She currently lives in Ontario, Canada with her husband, dog, and cat. She has degrees in psychology, teaching, and certificates in early childhood education, behavioral scientist, and autism.
Ever since her leukemia diagnosis, she has struggled with at least three diagnoses at any given time including but not limited to, fibromyalgia, rheumatoid arthritis, chronic back pain stemming from herniated bulging and ruptured discs as well as degenerative disc disease.
In this episode, Courtney and I talk about the manner in which illnesses dictate so much of our lives but despite that, we find ways to define ourselves outside of the pervasiveness of our illness. Courtney also gives us a glimpse into her typical day, comparing a good day for her with a bad day.
The Spoon Theory by Christine Miserandino
Find Courtney online:
Instagram – @chronically_courtney
Beyond the Pink Ribbon 