Updated: Mar 31
Navel and Leaves, photobooth image, Dina Stander ~ 2005
My core professional directive as an end-of-life doula is to resolve obstacles and reduce suffering. It is so obvious to offer this possibility to my clients and so much harder to be as generous with myself. I am slow getting things done and following through these days and then I am hard on myself about pacing and momentum. The mental and behavioral conundrums I find myself tangled in are magnified by the pandemic, but the cause is more about me than about society's woes. I live with a progressive spinal cord injury and chronic pain that cannot be fixed (and please don't exhaust disabled folx with whatever new method or med will prove us wrong, you do not live in our bodies).
In our cure-obsessed culture most people recoil from the words 'cannot be fixed'. Some people rage at it. I had an end-of-life client who, when there was nothing else to be done after years fighting to live, consistently railed at anyone within earshot that they were murderers because they did not stop the last swift progression of brain metastases. I did not try to talk them out of their rage, even while reminding them that the person who made them soup and emptied the commode was not harboring nefarious intent. Point being, raging at what cannot be fixed is cathartic in the short term but corrosive as a way of being. And the other point being that (since I cannot effectively recoil from my own self) I am slow these days because this pace helps me avoid bumping into my rage, until I need it.
Cannot be fixed.
I am prepping to co-lead a 6 week peer support group/workshop for non-medical chronic pain management. Online. During the pandemic, holistic 'complimentary therapies' like massage are not available and swimming at the Y is not an option either. My folks are coming into this workshop with an unusual load of challenges and fewer resources for relief. Some of what we navigate in the curriculum is emotionally sensitive, so I am cleaning out my own closet in preparation and trying to make friends with whatever I've stuffed away in all the tight corners over this last year in pandemic isolation.
I could not manage the mental health balancing act I 'carry on' with if I was cure-centric. My goal in the day to day is to live well with what is instead of tilting at the windmill of fixing it. But sometimes, in the early morning when I am lingering in bed and gravity has not wrangled my vertebral facets into their daily pinch (those long minutes when my bones don't hurt yet) in the stillness I let the rage rise. It is a little like releasing steam from a pressure cooker, contained but still wiser to keep your tender bits out of the way. The bedcovers muffle whatever sound escapes me and the dog pretends not to notice that I am contending with the magic act of making it ok not to be ok.
Every morning I wake up and my hands and feet are a little bit more numb. The rage I feel is born from an excruciating awareness of being. Something as precious as the sense of touch at the very tips of my fingers is going to disappear; my toes can feel the weight of the blanket but not the texture of it. All the communications from my flappers and tappers are fading away, one nerve ending and one synapse at a time.
In the first weeks of each new year I choose a word, write it on a piece of paper, and tape it to the wall above my desk. The word serves as a reminder, a shaping of the thresholds I may cross. Both an invitation to good juju and the intention to create good juju. 2021 must be a special year because there are three words that came to my pen and I could not choose, so all three have a spot on the wall. The words are vision, presence, and ask. It is presence that finally meets the rage head on, well enough so that I can ask for mercy and put my pants on one leg at a time to begin the day. Even though my fingers and toes buzz and the legs don't work so well. Even though I cannot be fixed. “Do your best,” I tell myself in the mirror, “you don't even have to be good enough, you just have to be.”
So I am slow, I try to get enough done, or something done, or at least part of the way started. I am better at encouraging others than I am at being productive myself. I feel sometimes like I am fading and blossoming at the same time. This is different than that sense of faded youth you get as you push 60, since that also comes with the confident bloom of mature beauty. This slow fading at the edges of my central nervous system is accompanied by a dreadful but beautiful awareness of embodiment.
It is true that losing sensation in my fingers and toes lends a certain surreality to every thing. Maybe even a poetic longing, which is fine until it swings towards a pathetic longing. This is where the rage is most useful, when the status quo is stacked against me. If I balance on the rage just right, with my presence intact, with my vision clear, there is a little moment of levity (the crack where the light gets in) and I can fart in the face of fate and rise above it all. And then I can ask to be healed which is so different and so much more inclusive that being cured or fixed. Its a tricky maneuver, I admit to having failed at finessing this more often than not. The profane element is necessary and the solace, when it has come, is never what I think I'm asking for but most times I've found I get what I need.
I got mad the other day. So mad it made me gasp and then the rage flooded in. I was out driving to clear my head and to upload some highway miles and a change of scenery to my pandemic and winter weary spirits. I didn't want the radio or music or podcasts. I even stopped talking to myself. And in the quiet of the fast car I felt this rage rising because I couldn't even begin to drive as fast as I wanted to be able to run. With my own legs pumping hard. As the day faded I could feel my psychic muscles extend and flex, extend and flex. I remembered to breathe as a loaded semi passed me barreling down a long hill. I exited to a rest area, the only traveler in sight. I couldn't make it ok not to be ok. I rolled down all my windows to let the cold in and howled out my rage into the gathering night.
Later, when I got home, the dog looked at me like she knew my tender bits had gotten in the way, like she'd heard my howl. I looked back, shrugged, and offered her a biscuit in consolation. Even her steady love is not a cure. Some things just cannot be fixed. The trick is finding a way to let off the steam, learning to heal without a cure.
Photo by R. Bannasch: Suki in the Garden of Broken Things