Sep 10, 2024
Appetite
Jason Stoffer
I’ll cut right to the chase: it is really difficult to keep weight off after a spinal cord injury. The first piece of real advice I got from someone living with SCI was on a phone call during inpatient rehab. They simply said, only half joking, “stop eating.” It’s obvious, I know. But still.
As a paraplegic, I lost the biggest calorie burners of my body - my legs. The problem became even more obvious after our CureCast conversation about metabolic dysfunction with Dr. Ceren Yarar-Fisher.
Jason a few years back, crossing a river while on a ram hunt in the wilds of Alaska.
I do my best, but my best isn’t likely to ever be good enough. I get to the gym or swim or ride my trike every day and I eat like a bird, but I stay heavier than I was pre-injury, with all the negative physical health and emotional outcomes that accompany that.
Here’s the thing: spinal cord injury robs you of the physical ability to do many things and have more diverse experiences; but it doesn’t rob you of your desire to do those things. My appetite, developed over 40-some years, hasn’t changed. But my body has. It’s the same story, over and over.
Jason with his wife Lori, at their wedding way back when.
I was laying in bed the other morning when my wife Lori walked by and I had the sudden appetite to run over, pick her up, throw her over my shoulder and spin her around as I’d done for the 20 years prior to my accident. Later that day, when I was driving past a steep, wooded ridge, my appetite kicked in to climb and see where it might take me. These appetites - these desires - follow me everywhere. I still desire the freedom to take a shit alone in the woods, anywhere I please. I still desire to feel the intimate caress of parts of my body where sensation has gone silent. And my appetite is particularly strong to sometimes be the helper and not always the one being helped on rigorous adventures.
It occurred to me that in my work for U2FP, where I meet with scientists, lawmakers, hospital administrators, regulatory agencies, donors and even my peers, I avoid references to ‘desire’ or ‘appetite’ altogether. Instead, my advocacy arguments remain strictly pragmatic and utilitarian. I cite health outcomes, the burden on our community, the cost to taxpayers, lifespan, independence, etc. But I often leave out any allusion to an appetite for the simple pleasures we enjoyed before SCI. In my mind, it just seems too hedonistic, too self-absorbed, too inconsequential. But in my body, I can feel the truth: that appetite and desire are the very things that make the human experience worth living. And that may be the strongest argument of all.
Jason on an advocacy call testifying to keep our research funding in Minnesota.
This feeling to abandon our desires is a constant force for those of us in the SCI community. It’s like gravity, urging us to jettison our appetite. It creeps in quietly and wages a war of attrition, slowly diminishing your inner resources. Eventually, you want to give up. And you bury your appetite for simple pleasures. This is reinforced by the messaging of people, even in your own SCI community, telling you to “move on” for your own good.
I don’t ever want to bury my desires deep down in my psyche, just because nothing can presently be done to satiate them. On the contrary, if anything will ever be done about the losses this injury brings, it will be because we’ve made the conscious decision to NOT forget our appetites. And to remind others how essential those feelings are. I need to remember and embrace the losses, not get over them. I need to bring them to the discussion and not brush them aside as inconsequential. I hope you will join me in doing the same. Whenever we have an opportunity to make our voice heard, yes, bring the numbers and the data. But don’t forget to bring your appetite!
Join us!
PS - For SCI Awareness Month, an anonymous donor with an SCI has offered to match all donations to U2FP - up to $100,000! We've already raised over $16,000 - help keep our momentum going by making a donation today.
