photo by Nousnou Iwasaki @UnSplash
I live in a state of persistent physical suffering (a condition I share with much of humanity - I know it doesn't make me special). Some days its hard to concentrate. Some days it aches to breathe. It is always hard to walk, or reach, or carry things. People see me out and about, stop me in the supermarket aisle to say they're glad to see I'm moving so well, while I cling to the shopping cart and nod as cheerfully as I am able. On this day, with a major spine surgery once again on the close horizon, I have landed on the dark side of the moon. Here the truth is cold to the bone.
My cold truth is that I mostly hate living in this body. I hate having to muster the chutzpah required of me to survive a day in it, let alone the next month. And another surgery. And then the 6-8 weeks of bedrest, the opiate blessing and then the withdrawal, the coping. Then learning a new configuration of bone, muscle, fascia, skin, and neural impulse that will allow me a way to rewire brain-to-shoulder-to-elbow-to-hand, all that effort for the grace of a successful ass wipe.
Don't get me wrong, I don't hate my Self, just the packaging. I am reconfiguring my personal boundaries to accommodate many weeks of meeting basic needs with as little intervention from others as I can pull off. Because, as grateful as I am to have abundant care support, being dependent is not great for my mental health. Today I sit at my desk clutching a stuffed animal, the one I rescued from being given away with the rest of my children's best toys. An artist-made donkey that is not Eeyore, not depressive in any way. Donks has come on many travels with me, and will come to the hospital next month so I won't be lonely in the night. I'm already thinking through the post-surgical twilight; the in-between of figuring out if I'm ok. Or not. Making sure I can still feel the texture of the sheet against my feet and hands. In those first hours and days after this sort of surgical assault, it will be good to have a friend like Donks under the covers making biscuits with me. Donks never needs me to make it look like I am doing ok.
My training and vocation add dimension to an anticipated hospital stay, I am not a civilian. Hospital chaplains have a different relationship with being in the bed than other medical professions, because there is less that we do. A chaplain's core role and operative functions, even before prayer, are simple empathy and encouragement. Please chuckle at my choice of the word simple, it is but it ain't. Because not everyone wants to be prayed for, but everyone needs to be seen and heard. And loved a little too. Interning chaplains walk mile upon mile upon mile of hospital corridor in order to learn how to show up bedside and be present. Its harder than it looks on the page. Chaplains share amongst themselves how much we hope never to be the person in the bed. Because in the bed, if you really need to be there, you are so naked. So vulnerable. I hate living in a body that takes me to that place, again and again. Against my will, maybe, but nonetheless by utter necessity. I can have surgery or I can be paralyzed. The conundrum being that the surgery can also cause me to be paralyzed. So I lean into delay and this time I may have delayed too long. Some nerves grow back, some do not. I wait and see.
Meanwhile, medical ptsd feeds my looping thoughts about the possible consequences of the upcoming procedure. I was 39 when I first had spine surgery. My kids were 9, 6, and 3 years old and I spent most of that summer parenting from a hospital bed in the living room. On my 40th birthday I had a port in my arm for twice daily vancomycin infusions to fight an infection in my lumbar vertebrae. I was able to avoid more of that till I was 56, when multiple surgeries revealed complex pathology, didn't fix much, but bought me some time to adapt. And now again, just shy of my 62nd birthday I'll have the gift of titanium rods and screws. Thats a lotta trips onto the dance floor to doh-si-doh with my dura mater. I'm not able to articulate how I feel about bone saws in tight quarters. If you are smart, dear reader, that idea makes you wince just a little bit. I've got a new surgeon this time around. So far I've restrained myself from asking if I can look closely at his hands, hold them in mine and murmur my own blessing over them to join all the whispered brachot that contribute to his art. Maybe in pre-op he'll indulge me for that little ritual.
But I digress, because it is taboo to tell that I hate this body. I hate having to live in it. I hate that it suffers the indignities of a disease process I have not caused by bad choices or hard living or even being in the wrong place at the wrong time. I was born this way. I've spent my whole life aging into this affliction. Devising workarounds and finessing adaptations. And I am losing the knack of making it look good. Its not that I am 'giving up'. I just can't any more. The synapses and signals aren't meeting their mark. I talk to my brother on the phone. My affliction is his affliction, as it was our father's and his brother, their father's and his sisters. Our children's too. Each of us contending as well as we can with this multigenerational degenerative spine disease. Its a pernicious thing. Life altering in a mean way because the timing of a flare or crisis is unpredictable, the rug can get pulled out from under you.
I don't hate my body because its too fat, or not conventionally pretty in one way or another. I don't compare my curves to other's or internalize the kind of self loathing that makes some people so miserable in their skin. I don't yoyo or keto, lift or sculpt. I've been content enough with my imperfect beauty. And… Nothing could have prepared me for decades of accepting less because of a progressive disability. Sometimes I sit in the car in the supermarket parking lot and rage at the way people take their mobility for granted. Walking easily to the store. Not counting the minutes before their legs turn wooden and numb. Casual as can be. Eventually I lift off from the dark side of the moon and continue my orbit on to the next errand. Because regardless of how I feel about the relationship between my ability and what needs to get done, the show must go on.
My body builds bone where it is most inconvenient and calcifies ligament that should be flexible. When I met with the neurosurgeon to review imaging and discuss next steps we chose the more extensive option, on the off chance that it will delay or even circumvent the need for further mucking about with my spinal cord. I could be paralyzed by this surgery. I could die from this surgery. And I could sail through it all well enough. Honestly, as calamities go (and given the state of the world) I'm not sure which I'd prefer. There's no avoiding this facet of my circumstances, believe me I try. Generally I am able to practice pragmatic optimism, asking good questions, researching what I need to know to vision myself whole again and mobile enough to persist. I'm a pro at imagining whatever adaptations I'll need to keep on playing with my family and friends and doing the work I love. But optimism won't interrupt the bio-physio-illogical calcification fuckery that happens all willy-nilly inside my spinal canal. Those discs will continue to bulge, the stenosis to squeeze, the ligaments to ossify, the dura to thin.
The surgical plan is laminectomy from C-2 to T-2 with a section of screws and rods midway to maintain stability and promote fusion. When I think about the surgery itself my mind skips through the atmosphere of possibilities, looping back and around itself like a murmuration of starlings. If I can take a few steps back from it all I find myself filled with wonder at how many different potential outcomes I can hold at one time.
Disability is a lousy lifetime dance partner, but I keep wanting to dance. Its hard to dodge dark thoughts while facing an unknown surgical outcome. What-if, sorta, maybe, kinda, and I dunno swirl around in here with me all day and all night. The only real certainty is that I'll continue being uncomfortable, navigating life with a spinal cord injury. Here on the cusp of my 62nd year, I begin to see this body has a shelf life. Its a bit cliché for people like me working in death-adjacent fields to point this out but, when it comes right down to it, mortality is a bitch. And aging with a disability is a bitch too.
These heavy thoughts link up, loaded with cliches like freight cars on a long train and in the midst of coming around the bend all clickety-clack the ideas, aspirations, and stuff I've collected over the years loses any meaning it may have had. What of me (besides a stoned grin and a really good hug) might be salvaged from the detritus of my existing at all? Having stewed in the dark with this question for a significant moment or two, I offer this advice, whispered into the sacred uncertainty of being human: Dive into the doh-si-doh, dance with your heart wide open, and never fear a visit to the dark side of the moon. We learn so much about ourselves there. Just don't stay too long. The light is easier to bear. When I nestle into bed these nights, waiting for surgery, I tell myself that I'm ok. That it'll be ok. That I won't forget how to be ok.
'Donks', by Dina