I sat in my wheelchair, one leg crossed over the other, as I waited for my spinal cord doctor to enter the sunlit room. I hadn’t seen him in over a year and was eager to ask the questions that had built up over the many months. Spinal cord injury is incredibly complicated and, to my surprise, the questions keep coming despite my incessant research.
He entered the room and after doing the normal questioning, he asked what I was in to see him for. I was wearing shorts, and I pointed to my ankles and calves. “I have noticed that my legs slowly turn purple throughout the day when I’m sitting. I heard compression stockings help with that… should I be wearing those every day?”
To my dismay, he nodded. I hate putting on compression stockings. With toes that can’t point, legs that can’t push, and hands that can’t grab, getting them on entails a 20 minute wrestling match with my own body, complete with yelling and cussing.
I took a deep breath and said, “Okay. So. Another question - I deal with a lot of blood pressure issues, low blood pressure issues. I have a standing frame sitting in a room in my house that I am loath to use, but I have heard that standing regularly can help with orthostatic hypotension. Is that true? Should I be using the standing frame daily?”
Again, he smiled and said, “Yes, that’s right” and continued to explain a plethora of benefits that come with standing.
“And that’s like… 30 minutes a day?” I asked, trying to sound grateful for the information, rather than annoyed.
“Well, start with 5 minutes and then you can gradually increase as you tolerate it better. It should also help with the swelling and circulation in your legs”.
“Great.” I said.
As you can tell by my leading questions, I already knew that I should be wearing compression stockings daily and I was already familiar with the benefits that come with using the standing frame. But I have resisted both of these activities for years because they are time consuming, and I have been frustrated with the amount of time it already takes to care for a paralyzed body.
I spend 3 hours a day minimum to maintain upper body function (through the gym) and preserve my lower extremity health (through cycling). That’s 3 hours fewer a day than I had as an abled person. Between morning skin checks, which I am also neglecting, standing frame use, and my “WWE: Compression Stocking Edition” ritual, that’s another hour, totalling 4. This doesn’t include bowel care routine time, or the additional time it takes me to do literally everything, like prepare food, clean or get my mail.
I had been avoiding that extra hour for a long time. But a few months ago, I started taking on my health and wellbeing in a deeper way, and it became clear that I needed to do some of the things I had been neglecting. This frustrated me. “It’s such a waste of time,” I told a friend.
I paused and reflected on that comment for a long time. Was caring for my body in the specific ways it needs an actual waste of time? Why do I feel like my body is this thing that gets in the way of my life? And why does work count as life, and recreation counts as life, but anything that involves caring for my health not count as life?
It took only a moment for me to see that this was a symptom of ableism, which is inextricably connected to capitalism - the idea that our bodies are valuable only if they can work and produce. That’s why my self-esteem took such a hard hit when I became disabled - I could no longer compete in the market with abled people. I felt worthless.
But what if the world around me was wrong, and I was actually right? What if caring for my health is the life-iest thing of all? What if nurturing this precious, fragile body is the perfect way to spend my time and could actually bring me greater calm and happiness than work ever could?
I decided that I wanted to shift my values to reaffirm the worthiness of my disabled body. So, I went to the doctor - because I knew I needed a pep talk and a bit of reconfirmation as I started a brave journey. I have worn compression stockings for the last ⅚ days and today I stood for the first time in my standing frame. I lasted 6 minutes and it was pure torture LOL. But my body will adjust and I am more committed to the process.
I so wish that I could have learned these lessons as an able-bodied person before I became disabled. It would have made my transition into a new body so much gentler, so I want to prepare all people with bodies for that transition. Because the truth is that if you have the privilege of aging, your body will change, lose function and acquire disability. It is the beautiful way of nature. The way we view our bodies will determine how we will experience the aging and disability process that comes with it. So why not prepare by starting to shift our values? Undoing the ableist, capitalist mindset around bodies is a reclaiming and an investment in your future self.
Try resting without judgment. Try listening to the whisperings, pleadings and nudgings of your body. When it hurts, when it’s fatigued or when it’s rejoicing, take note. Your body is worthy of care and love. Tending to it is never a waste of time or life - on the contrary - it is the only vital thing about this existence. It is life. Without these bodies, we have nothing - so let us take very good care of them while we have them. Our life depends on it.