Trigger warning: eating disorders, disability
Below is an assignment I submitted in response to a 24-hour wheelchair experience in my PT Interventions course. We were expected to spend 24 hours in a wheelchair to see that even that amount of time cannot begin to show us what it’s like to use a wheelchair long-term. The paper has been published on The DPT Diaries with permission from the course director.
As I sat down into my wheelchair, my first thought was, “How on earth do I turn this thing?”
Actually, that’s a lie.
My first thought came before I even sat down: “Is my body going to fit? Am I about to be humiliated in front of my classmates?”
I found myself torn between two mindsets for all but about 5 hours of the 24-hour assignment, during which time I was asleep. Both trains of thought filled me with guilt, and I hesitate to write about the experience here. Thought #1: As someone who is currently in recovery from an eating disorder, I initially felt relief that I now had an “excuse” not to work out. I have been having trouble going to the gym without obsessing over the number of calories burned, and I figured that if someone asked me to exercise with them, I got a full 24 hours “off.” I feel terrible that I found a shortcut to dealing with a bigger issue- I am too embarrassed by my size to go into public much anymore, let alone to a gym with my seemingly fitter classmates. Unfortunately, the relief was greater than my guilt, and I allowed myself to feel appreciative of the experience for that reason.
Thought #2: The exact opposite of the first. I noted above that I have trouble stopping myself from focusing on calories consumed and calories expunged. The longer I spent in the wheelchair, the more the eating disorder part of my brain told me, “You’re gaining more weight with every minute you don’t get up and move.” When I wasn’t happy to have an excuse to avoid the gym, I was panicking about what I thought would be an inevitable overnight change in my body. Off-hand comments from my past physicians and physical therapists rang in my head- “lazy,” “fat,” “complacent.” I began to quickly succumb to those thoughts of self-doubt and disappointment.
The dichotomy of “Thank God that I get to rest” and “This rest will kill you” was taxing, and I felt physically and emotionally drained by about 8 PM that evening. I tried to think about how it would be to struggle with disordered eating, body image issues, anxiety and depression and then be told that a wheelchair was my only option at efficient movement. I’m sure that I would adapt at some point, but I can imagine that my mental health would take a hit in the beginning. This led me to reflect on my future patients- patients who might struggle with disordered eating prior to becoming wheelchair-bound, or those who might start struggling after being in the wheelchair. I hope to be more cognizant of these issues moving forward, particularly as I enter my remaining STEPs and long-term rotations.
These psychological struggles also led me to think about how much we make other people’s situations about ourselves. How bad “we” feel for a person in a wheelchair (especially those who do not view their disability as the worst part about them. Poor things don’t know how bad they have it). How hard it was for “us” to do just 24 hours in a chair. How it makes “me” late if someone fighting a physical or mental battle is holding me back. How talking about time in a wheelchair makes “my” issues worse and more uncomfortable. I in no way mean to disrespect the assignment, for I understand the incredible importance of the experience to better serve our patients. In those 24 hours, however, I largely felt guilt and anger.
Physically, I managed alright. I had never before noticed just how heavy doors are, even in places that are otherwise fairly wheelchair-accessible. After class, I went to Jimmy Johns to get a sandwich, knowing that there was a ramp outside the building that I could use. It seemed simple enough, but as I wheeled up the ramp I was reminded of my lack of upper body strength. Even when I eventually made it to the top of the ramp, I was met with about 8 sets of panicked eyes, belonging to people unsure if they should help me with the door. After a few tries of trying to enter by myself, I made eye contact with the cashier, who quickly ran over to hold the door. Throughout my time at Jimmy Johns, I noticed that all of the workers were very attentive and kind towards me. I have been in this Jimmy Johns many times before and have never gotten much more than mild eye contact and a, “Welcome to Jimmy Johns. What can I get you?” Instead, I was asked about my day, wished a happy afternoon, given extra bags to carry my things, and apologized to twice when I asked about an ingredient that I knew they hadn’t had for weeks. After a long week of classes, I was hoping to remain largely anonymous in Jimmy Johns so that I wouldn’t have to exert extra effort to smile and interact with the workers. Instead, I found myself having to do the exact opposite so as not to offend anyone. They were likely doing the same.
Admittedly, after the Jimmy Johns experience, I kept my movement to a minimum. At one point, I felt myself fading as I became increasingly dehydrated sitting at my desk. I spent about an hour contemplating if it was worth it to wheel across the thick carpet into the kitchen to get water. I succumbed to the fatigue and had my roommate bring me a bottle of water. Along the same lines, I limited how much I went to the restroom even though my bathroom is inside my room and is designed for wheelchair access.
This experience was truly eye-opening, in ways beyond what I had anticipated. I feel blessed to have had the opportunity to complete this experience; I hope that I can look past my individual struggles and translate what I learned to my patients and help them manage or transition into/out of a wheelchair. For those 24 hours, the wheelchair defined me. I wonder how that would have changed over the course of a few months or years, for me and for the people around me. I am grateful for the assignment and look forward to learning more about my patients’ needs; I will use my time in PT school to keep this momentum going, remain open-minded, and learn from my patients to tailor my treatment to each person’s individual needs.