In 2016, I led a group titled Living Chronically for folks living with chronic pain, disability, or illness. The participants were amazing. The heroics they went through to get up and get to the group and hold a supportive, reflective, and often silly space was pretty damn remarkable. On the first day I remember encouraging everyone to make themselves as comfortable as possible but even as the words were coming out of my mouth, I noticed that it sounded like a sad mockery. Make ourselves comfortable? Our lives were often shaped by the gnawing pain and discomfort we constantly lived in.
In place of this statement, we took up the phrase, “if there is anything you can do to ease any of your discomfort, we’ll support you in doing that.” Everyone had an opportunity to say what that might be. For one person, it was moving to a space without overhead lights, for another is was being able to lie on her side on the floor. We supported each other in shedding some of the baggage that prevented us from being able to do this in most social situations (and often led to our being socially isolated as a result). We had internalized some of the dominant cultural crap around being seen as too needy or taking up too much along with the social stigma that comes with not keeping our illnesses under an able-bodied facade. And the support helped. Many folks were able to make it to the group when they wouldn’t have made it to other events where they felt additionally compelled to appear to be without pain. This was great for group dynamics and has also stayed with me as I work to live with ongoing chronic pain. It has even impacted my yoga practice, not in terms of asana, but in my prioritizing my practice in unconventional times and places.
Lyme has really reduced my capacity to be out in the world doing everyday things for anywhere near the lengths of time that I used to. My legs start throbbing if I stand for any amount of time. My body cramps up if I sit too long. I get exhaustion walking. Lights and noise make my pain flare. I do what I can, but there is much that is just a really tricky balancing act. Often restorative yoga can help as a kind of “reset” for my body. If I can stop mid-day and release some of the tensions building up, I am better able to go from one thing to another. Its been awhile since I’ve lived in the centre of things, so being able to do this has relied on me bring my yoga mat and finding a place to flop and tune into replenishing my oh-so-easily depleted body.
I’ve carried my share of self-consciousness about this as I’ve gone about finding a corner of a park, an area of a ferry, a side room at a gathering. My yoga is not glamourous. There are no impressive backbends or headstands. The Living Chronically group was invaluable to helping me externalize the shame that comes with failing to attain an able-bodied pretence. Recently I was doing yoga on a ferry to Vancouver Island and could hear the odd passerby talking about it, “no that’s Cat/Cow pose, that’s what it’s called–Cat/Cow.” Another time, “oh hmm, I guess I could do that. I just need a mat.” Yep, just a mat… and an ability to over-ride disapproving glances and stay steadfast in my commitment to care for my chronically ill body.
Let’s make spaces where we support each other in doing whatever we can to ease whatever discomfort can be eased.
Let’s hold space for what our bodies actually need and not how they can appear the least disruptive.
Let’s give up the able-bodied charade!