Wheelchairs, Jimmy Johns, and Mental Wellness: My 24-hour Wheelchair Experience

Below is an assignment I submitted in response to a 24-hour wheelchair experience in my Physical Therapy Interventions course. We were asked to spend 24 hours in a wheelchair with the understanding that even that amount of time couldn’t possibly show us what it’s like to use a wheelchair long-term. The paper has been published on this blog with permission from the course director.

Trigger warning: eating disorders, disability

***

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 was: “Is my body going to fit? Am I about to be humiliated in front of my classmates?”

THE MENTAL

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’ve 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 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 I get to rest” and “This rest will kill you” was taxing, and I felt physically and emotionally drained by about 6 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-users, 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 [1 or 2-week clinical experiences at the end of each semester] and long-term rotations.

My 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 felt mostly guilt and anger.

THE PHYSICAL

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.

The task 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 8 sets of panicked eyes, belonging to those 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 three times, given extra bags to carry my phone and keys, and apologized to twice when I asked about an ingredient that I knew for a fact they hadn’t had for weeks. After a long week of classes, I was hoping to remain 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. The people I met there 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 gave in 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 eye-opening in ways beyond what I had anticipated. I feel lucky 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’m looking forward to using this time in PT school to keep the momentum going, remaining open-minded, and learning from my patients to tailor my treatment to each person’s individual needs.

 

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