In this commentary, author and educator Tracy Ramey shares a poignant reflection on the challenges of navigating the holiday season as a chronically ill caregiver.
This commentary is part of the Voices of Disability Economic Justice Project, a partnership with TCF’s Disability Economic Justice Collaborative. Voices of Disability Economic Justice showcases disabled writers’ first-person perspectives on the economic issues that matter most to them.
My white dollar-store Christmas tree is lit with warm string lights. Our ornaments are hung with care, including the tubeless Omnipod insulin pumps my daughter used last year. We painted and hot-glued ribbon on them to make into ornaments. As a chronically ill caregiver, if the school district I work for had not given us the full week off for Thanksgiving, I’m not sure I would have had the energy to purchase and decorate the tree before Christmas break.
Most of my career I have cared for other people. As a child care worker and now paraprofessional, carrying other people’s feelings and emotions became my norm. Add to that being a wife and mother, and my time never felt like my own. Lying in a bubble bath staring at the chipping paint and cobwebs on the ceiling and trying to convince my tense body that I was indeed relaxed was an exercise in futility.
I hadn’t learned about the concept of being a “spoonie” until a couple of years ago. Coined by blogger Christine Miserandino, “spoon theory” explains that people with chronic illnesses start out with a limited amount of energy, or “spoons” during the day. We have to meticulously plan out our day to preserve our spoons, which in and of itself is exhausting.
In general, I’m a chill type of girl. I go with the flow in most situations, but my time is something I lose my chill over. You can’t get time back. Especially since as a spoonie, I have to use so much time planning so that I can have the energy for another time in the future.
My daughter has type 1 diabetes and making sure her disability is cared for is challenging. Having multiple chronic illnesses, and caring for a child with multiple chronic illnesses, I often shake my head in wonder that there are people in this world that can leave the house without thinking about insulin, adhesive tape, pump supplies, continuous glucose monitors, Excedrin, blood pressure meds, potassium supplements, anxiety meds. I’ll stop there, because that isn’t even half of the things we have to leave the house with or meds we have to have taken before leaving the house.
Fortunately, I have insurance through my job that covers most medical costs, but food is another expense to make sure my daughter is well. I make too much on paper to qualify for government assistance, so bills often get shifted to make sure we can eat and visits to our local food bank are a must.
I worked a side gig during the summer and my anxiety went through the roof due to the fear of leaving my preteen with a medical condition alone for a few hours at night. After being placed on anxiety meds, I decided to quit the side gig. Actually, I broke down. I never just quit a job. I couldn’t go in for my shift that night because my body physically wouldn’t allow it at all. I was planning on having that income to help with living expenses and Christmas gifts. It felt like even with the best intentions, my own body was conspiring against me.
The catch-22 of the holidays for me is that I have the desire to do more, but lack the mental stamina or financial ability to do it. I want to drive to see the lights, visit family, or go on any number of holiday excursions that I used to attempt. Having disabilities and being poor is like driving a car on fumes and praying you can make it to the gas station. All of your resources are tapped out yet you push ahead past empty because you have no other choice. You’ll deal with the consequences if they happen. When the mind is so fixated on survival, the holidays are like a sucker punch to the face. A sucker punch that I know is coming yet can’t seem to avoid.
Thankfully, all of my immediate family lives in my city so this season, I haven’t had to worry about traveling. I really wish I had the luxury of just focusing on the joy of the season but the base-level anxiety I feel doesn’t allow me to do that. Yet for my child’s memories, and my own mental health, I am attempting to create moments of deep connection. This year, we will rest in the enjoyment of peanut butter cookies, crisp wintry walks with our pups, and the glow of our shared love for one another.