The stormy life of a disabled creative
How I'm navigating the ongoing ups and downs of my body
It’s snowing again. Not something so unusual for spring in Calgary, but I don’t remember the back-and-forth being quite so extreme since we moved here. For the past few weeks, it’s felt like we’ve had a blizzard one day, followed by 19 degrees and sunshine a few days later.
Likewise, my health has also been on a bit of a rollercoaster. Hubby and I like to joke that my body is like a finely tuned sports car, with any small adjustment having outsized ramifications.
I’ve been having a lot of work done on my wheelchair in the hopes of dealing with some chronic pain issues. Some of that work has been effective, like having a gel layer added to my seat cushion to relieve the cranky tailbone pain I’ve been dealing with since I left the hospital. The first week after we made the change, my tailbone was noticeably happier, but my hips were screaming in protest. Thankfully, my hips eventually adjusted to the change, and overall, we clocked that as a win.
Other adjustments, sadly, haven’t quite landed as we hoped.
A physiotherapist identified a potential issue known colloquially as “miner’s elbow,” where the fluid in the elbow joint can become inflamed due to constant pressure. My elbows developed calluses decades ago because of the way I brace my body on the wheelchair’s armrests. The theory was that if we put in softer armrests, the pressure wouldn’t be so hard on my elbow joints in the long run.
The change out of my armrests hasn’t gone so well. I had hoped that my protesting right shoulder blade and right side would fade the same way that my hips had gotten used to the new seating, but it’s gotten worse—a lot worse. Toss in a couple sharp sneezes on top of some irritated muscles, and now I’m back to taking the heavy-hitting painkillers to deal with what feels like a badly pulled rib muscle or possibly even a cracked rib.
The good news is that I have another appointment at the seating clinic this coming Friday to hopefully figure out a better solution for the armrests.
The bad news is that I’m back to navigating another injury. If it is a pulled muscle, it should resolve itself in a few weeks. If it’s actually a cracked rib, it’ll take longer.
Operation: Short-term planning
I came to the rather humbling realization recently that, given my current health challenges, I don’t know how I’d hold down a 9-to-5 job right now.
Not because I’m not highly driven, skilled or anything like that. Simply because I wake up every morning at the mercy of my boss, which is my body.
“Hey boss, what are we able to do today?”
My body will then contemplate at length a potential agenda for the day.
Pain meds?… definitely. Take a “good stuff” first thing, followed by a top-up in the afternoon.
Painting class?… nope, cancel that. Way too much jouncing on the ride there for us to handle.
Painting at home?… maybe a tiny bit, since extending the right arm aggravates the right side. Limit to 15 minutes on the paint-by-number.
Novel editing?… yes, we can handle that. Try for at least another chapter cleaned up.
Studio time?… definitely not. Bump that out by a few weeks.
Lucy’s midday walk?… nope, you’ll need to ask hubby to do that. If she pulls abruptly, that’ll piss us off for hours after.
Consultant meeting with Calgary Arts Development?… I know you wanted to be there in person this month, but it’s gonna have to be virtual again.
And on and on… every task, every hour is a reassessment based on priorities versus level of energy and pain.
Of course, if I randomly sneeze or unexpectedly laugh while listening to a podcast, then even this tentative plan for the day can go out the window as I nurse new and exciting pain in my tender ribcage.
Falling back on flexibility
Another trick I use is to keep several back-pocket projects available that I can swap in if I’m not able to work on something due to my current pain or energy level. When I was creativity coaching, I would encourage clients to keep a list of tasks pre-labelled with the level of energy required.
This is essentially “spoon theory,” where a person with chronic pain acknowledges that they are operating with a certain number of spoons each day, so they need to spend them wisely.
One of the back-pocket projects I’ve been working on while I spend more time at home has been to set up a separate social media account for my novel writing project. In my promotional experiments over the past few months, I found that the algorithm got too confused when I began pumping writing content alongside my visual art content on social media.
Thus, my ever-expanding media empire now includes the Instagram account books.of.adwin.
Do I really, really need another Instagram account? Probably not.
At the same time, I know from past experience that sometimes the best way to refine a creative project is to deliberately talk about it. I figure that recording a few videos each week where I talk about the inspiration for the novel and how my journey to self publishing is going will help me better figure how I’m going to promote it in the long run.
In other words, you can’t find your voice unless you’re willing to speak.
Embracing the tempermental weather
In a recent trance meditation session that Stefan did with me, he likened my body to the sky and my health challenges to the weather patterns that crossed it.
I really liked this metaphor, because it acknowledges the variability of the weather without making it either positive or negative. It’s not that a blizzard is inherently bad, it’s simply unpleasant to experience. Likewise, sunny days can be incredibly enjoyable, but no one believes that they’ll last indefinitely.
I don’t enjoy being injured. No one does.
At the same time, I recognize that it is going to be part of my life experience as a person living with a significant disability. I can’t fight it or deny it, so I am continuing to learn how to work within it.
“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” ~ Vivian Greene
Tickets are now on sale for our May CreativiTEA workshop. This one is all about using simple pen and paper to draw soothing patterns anytime, anywhere.
Slow Down with Slow Drawing
Sunday, May 24th between 1-3pm
Atelier Artista (4th floor), cSPACE Marda Loop
It’ll be our last workshop before we go on hiatus for the summer months, so I hope you’ll join us!
I can totally relate to your experience. Having OI can be a bit of a pill to say the least. I have always had back pain that comes and goes over the years, not to mention the breaks and cracks of my bones. But the back pain has increased since I got hit by a car for the second time in my life.
I take nutritional supplements such as glucosamine that helps to reduce my pain. I also do some stretching and exercises on my bed 3x a week. My physio helped me with some exercises that help strengthen my muscles. I have also tried IMS treatment. Check it out, it might help. And of course if all else fails there’s painkillers.
I really want to spend more time being creative too, but at the same time I need to continue working. It’s difficult working full-time and then have the energy to be creative at night. I’m now working on a plan to do that. In a couple months, I will start looking for a part time-job, so I can dedicate more time to writing!
I relate to you a lot, despite having an invisible disability. There are good times, but there are bad times too. It goes like waves, and no matter what stage you're at, you gotta keep on going.