Invis-Ability

 
At the end of 2007, for a combination of reasons that boil down to nobody’s fault, I got a nasty sports injury to my low spine. It could have been worse, and is for some people, but it was disabling, and it was supposed to be permanent: walking was what was left to me, according to truckloads of spine experts, and that carefully. Walking and the daily management of the fallout, for years.
 
Last year I moved to Canada, and ten months ago, found a physio who has worked hard with me to change my life and possibilities.
 
Next week, I’m swimming a triathlon relay leg as a fundraiser for a great local organization.
 
Even if it goes badly, I’ll probably swim it significantly faster than the average person without a spinal injury.
 
This brings me immense joy words cannot encompass. This is astonishing, mind-boggling, unlikely territory for my body and spirit.
 
This is not an inspirational poster.
 
This is not simple.
 
 
* * *
 
 
People keep asking me, especially on the tough days if I let slip even a sliver of what kind of harrowing, scary, uphill, if also transcendently beautiful journey this has proven to be:
 
Why are you doing this?
 
It’s a legit question. A triathlon leg isn’t just hydrotherapy.
 
 
* * *
 
 
Mostly, I don’t talk about the harrowing bits, and people can’t see the half of it, so they just read me as an athlete again now, as if that’s something you go and buy at a store.
 
As if it’s an identity you just have by magic that can’t be taken away in one ferocious moment, as it was for me 8 years ago, when I was at just about the strongest and fittest a body can be.
 
 
* * *
 
 
Here’s what inevitably happens when a person with a spinal injury mentions it: whomever they are speaking to says they know JUST HOW THAT IS because one time they had a bad backache and/or went to a chiropractor and/or had acupuncture and/or some interminably long and irrelevant thing about yoga.
 
Also, they will mention that the injury surely happened because the person who got it didn’t have enough “core strength.” (Thanks, evidence-based expert! I guess being a martial artist in redonk-buff peak physical condition wasn’t adequate! I was lazy and weak and that’s why it happened, you’re right!)
 
FYI: when we smile and nod at you in response to these sorts of comments, we are exercising excellent self-restraint. Especially when our crushed nerves are already making us want to bite you.
 
 
* * *
 
 
Here’s what happens when a person with an invisible injury that has life-long episodic or partially disabling implications is able to compete in athletics of some kind again, but still requires some accommodation:
 
*crickets.*
 
Or: outright disbelief.
 
Or: behind the scenes undermining about how the person is just trying to get away with something.
 
Or: simple erasure of their daily lived experience in their body, their disability, their injury, and their right to dignity, competence, and joy even within the limitations they may have.
 

You’re either broken or you’re not, people imply, or say outright in one way or another.
 
Pick one.
 
 
Requiring someone to make public – over and over again, to everyone they encounter (regardless of that person’s medical expertise or ability to hold confidentiality) the most specific and often embarrassing details of their medical situations in order to have ‘the right’ to receive accommodations is not only offensive and dumb, it’s illegal.
 
It’s also something most able-bodied people feel absolutely entitled to.
 
 
* * *
 
 
Here’s a PSA:
 
Just as surely as telling them they’re lying does, making an oversimplified inspirational poster out of a person working through pain and against steep odds every day for months and months (and years) erases the real work and the real meaning of all that work.
 
It erases the person.
 
 
* * *
 
 
For me to be able to do this one zero-impact sport again, and at competition levels(!) – even though I still can’t carry more than forty pounds more than forty feet without risk of breaking myself badly, even though mobility, nerve function, and pain-levels are a total crapshoot for the first hours of each day after the immobility of sleep, even though I may or may not pay a steep price in pain and damaged capacity to bend at all and weird and embarrassing nerve function issues whenever I push myself too hard, or something out of my control happens and hurts me, or for some reason I am not able to do the simple things I need to do to take care of myself – is a tremendously meaningful thing.
 
Even swimming, even in no-gravity, the bones are not sound, the old compensations are gone and I’m still building the better ones, and I spend a lot of time between pain’s teeth.
 
 

Realistically, I’m not looking at full recovery here. The x-rays alone make that clear: some things cannot be fixed.
 
The MRIs just illustrate the discrepancies between what appears to be happening and what actually happens. My clinical symptoms and lived experience since the moment of the injury have never adhered precisely to the expected maps. Double crush phenomenon explains this, the spine experts muttered and put in their report, giving me at least something that would make an excellent band name. Trouble is, no one seems to really know what that is, or how to fix it.
 
What I’m looking at, it seems, is pretty much what I have right now.
 
Now, after ten months of twice-weekly medical intervention and daily work of my own toward improved function: in the water, I can have strength, joy, speed, and accomplishment in addition to all that.
 
That’s a whole lot more interesting and fun for me than sitting around complaining, which is not in my nature anyway.
 
It’s a better quality of life.
 
It’s joyful.
 
It’s complicated in the day to day.
 
It might improve: I’m in uncharted waters that were supposed to be impossible to swim already. I hope it does get even better, and will do my every part to make that happen – but I have no guarantees, and the bones of the thing are the bones of the thing.
 
Bodies are like that.
 
Life is like that.
 
 
* * *
 
 
When I teach my students about the tools they need to be functional scholars and adults in this world, I give them my own definition of critical thought: the capacity to understand that more than one thing is simultaneously true.
 
 
* * *
 
 
Those in my life who know my injury intimately (by having seen what it has done to me for many years – something most people never see) have asked me why I’m doing this because they worry.
 
They don’t want to see me backslide, or suffer, or get kicked in the hips by aggressive racers with something to prove, or, you know, drown. They worry. That’s what people who love you do. I worry about these things sometimes, too, but I have the advantage of being able to plan and strategize and train to make them all at least unlikely.
 
Those in my life who don’t know how bad it has been (and can still get) generally just read me as an athlete now, and can’t understand why I’m not also running and biking, or doing martial arts again. They don’t see why I’m worried about the potential costs of having to do the race without the tiny but truly helpful spine support of the wetsuit if the water proves too warm for TriBC regulations on the day of the race.
 
You swim faster than me, I see them thinking. You’re strong as hell. How is that broken?
 
It’s not.
 
And it is.
 
All I need from you is to give me room to excel in the ways that I can, and maybe to celebrate with me when I manage to pull it off.
 
What I want from you:
to see what it means.
 
 
* * *
 
 
Yes, if necessary in a tight corner, I could take impacts through the soles of my feet ricocheting up into my crooked pelvis and coccyx, my disc-less lumbar vertebrae, by running, kicking or throwing people, or whatever. Later, I’d pay for it, in the dark, alone, for days or weeks (or in the pre-Canadian healthcare days, for months and years).
 
Since the injury, life has actually required these kinds of impacts of me on several occasions, and I’ve done it (adrenalin is a majestic thing). And I’ve paid for it.
 
Yes, even in non-emergency situations, sometimes it is easier for me to just move the heavy couch myself and pay those consequences than it is to get into yet another big discussion and explanation-fest with people who patronize, insult, and dismiss my deep knowledge of the strengths and limits of my own flesh, within which I actually live.
 
Yes, I swim pretty fast now.
 
Yes, I woke today with pain on the 1-10 scale at about a 7, and it has been there for several hours now, and my mobility’s probably 80%, and in order to get out of bed, I turned onto my side, slid both legs together over to the side of the bed, dropped my feet down over the edge while pushing myself up with my arms to keep my spine on as straight a line as possible, because this is the only way it can sometimes be done without blinding explosions of pain. Or at all. In order to put on pants, I sat down on the edge of the bed because I couldn’t stand on my right leg without nerve-exploding grenades and the structural weakness of my spine failing entirely to hold me up.
 
That’s all better than it used to be, if a bad day for how it usually is now: what’s really different is that this isn’t the norm anymore, and it’s something I know will not last as long as it used to. It is no longer where I have to live all the time.
 
It’s a flare. A long one, going on a week now, from swimming the race course without the support of the wetsuit, to see if I could. (I could. I did. Now there’s this. Now I’m doing my best to work through it.)
 
I’ve been training hard, and it costs me something, even as it strengthens me and gets easier and better by the month. It’s inevitable that I won’t do everything perfectly all the time, or won’t yet be as strong as I will become if I can keep this up, and I will sometimes exacerbate the injury.
 
It’s also inevitable, given my nature, that I will push myself to grow and excel: as an athlete, an artist, a person, I’ve always been the kind who has to beat her own last best time, do better than her own last best performance. Drive is strong in me, and my interest in half-assery is weak.
 
Striving for a balance between challenging myself and being sensible – with expert help from my physiotherapist, swim coach, my own study, and my daily, lived practice and experience in this one body I’ve got – is what’s letting me move so far so fast.
 
I don’t always find that balance. I push too hard, ask too much of myself, and pay for it. The last thing I need is people telling me how “fine” I am now, how “all that” is stuff of the past, how I should be doing more.
 
They aren’t the ones with meathooks in their backs. They aren’t the ones who suddenly can’t feel their feet when they’re in the middle of a lake.
 
 
* * *
 
I didn’t think I really wanted to talk about any of this publicly. I just wanted to swim, for joy, because unexpectedly, I can.
 
But it has become more complicated than I wish, because of the many erasures people make, and the much-larger-than-me things those erasures signify.
 
This is about disabilities, invisibilities, abilities within limits, how actually complicated that is in real life in spite of the often idiotic and hurtful ways people fail to see that real complexity, and what we’re willing to throw down in service of what.
 
In its most universal terms, it’s about this embodied human condition, and having courage, and finding joy.
 
This is also about the most personal answers to the most personal life-forces and experiences. Asking me why I’m doing this triathlon leg is also asking me why I cut my hair, covered myself in ash, rent my clothes, donned a lion skin, and walked thousands of miles west to the ends of the earth when my beloved was dead. That’s a metaphor about the Epic of Gilgamesh, for those who don’t know the story. It’s also not really a metaphor, for those who know me. It’s asking me how I have come back from unbearable losses. It’s asking me why I decided to.
 
Sure, I could answer the “why are you doing this?” with a perky “because it’s fun! and I’m just so happy to be here!” in the voice of an ingénue I am not. Sorry, that ain’t me. (Luckily, I’m not performing at a level that means I’m looking for corporate sponsorship, so it doesn’t have to be.)
 
I would much rather talk to you, if you really want to talk, about the kinds and qualities of deep joy that are possible when one has lived for extended periods in the underworld with their heart still beating.
 
Better yet, I’d rather not-talk with you, and instead take you to Alice Lake where the sky is a raven-filled bowl and the silken water holds us up.
 
 
* * *
 
 
When I ask myself in the fearful moments ‘what’s the worst that can happen?’( and get past the obvious but necessarily go-to jokes about lake monsters, because lake monsters are funny), what I answer is:
 
That something goes very wrong and no one is there.
 
Or:
 
That something goes very right and no one knows what it means.
 
 
* * *
 
 
So here’s why I decided to do this, and why I’m pushing through a lot both psychically and physically to pull it off. Other people with other invis-abilities and other lives and other inner worlds and different goals and other kinds of support or painful lack thereof will have different reasons.
 
In no particular order, then:
 
 
Because swimming an actual triathlon relay-leg race was a mildly ridiculous goal to set in my physiotherapy for the spinal injury that partially disabled me over eight years ago. It was a possible but high bar toward which I could work while healing in ways I’ve been told for years I couldn’t, and while learning new ways to work with the injury where it cannot be moved.
 
 
Because now that this goal is self-evidently not even mildly ridiculous, just riskier and more painful than it is for someone without the injury I have: I do not want to live broken anymore. I want my physical expression to once again be congruent with who I feel myself to be in this world.
 
 
Because after almost a decade of organizing my entire life, schedule, and willingness to have people near me at different times around the fact of devastating, life-changing, world-shrinking daily pain; around the fact that I couldn’t wash my face in the first four or five hours of each day because I didn’t have enough mobility to bend even that much, or to deal with basic body care, or put on clothes, or pick up something I dropped on the floor, or ten million other essential things:
 
I can.
 
Thank you, Canadian healthcare.
 
 
Because it still hurts almost all the time, if so much less than it did – but the new full mobility for most of each day means the pain doesn’t have to stop me now.
 
 
Because most of the peripheral nerve problems – which create bizarre, intensely alarming, and difficult things like sudden loss of sensation, weird organ and system-function changes, etc. – are gone unless I flare things up by pushing too far. When it flares, I have access to consistent & high quality care to help me get right again–which, with help, usually happens in a matter of days now, not weeks or months, so I no longer have to shrink from risk the way I used to.
 
(Thank you again, Canadian healthcare.)
 
 
Because even if I blow it utterly and “take a 1500M bath” as our Titans swim coach says, our Quest for Helping Hands relay team raises some money for a great organization doing important work to increase food security and reduce homelessness in our region.
 
 
Because I’m pretty good at it: not just “pretty good at it for someone with a spinal injury” – but “pretty good at it” full stop. The spinal injury part is just what makes the good swimming so gobsmacking and gratitude-inducing.
 

    (A side-note, for the folks who think it’s just innate or happens by fairy godmother, here are the reasons I’m swimming pretty fast: because for the last seven months, I have done it just about every day whether I felt like it or not, and so I have rediscovered what I used to know from a childhood of competitive swimming, and also learned many new things. Because I watch and listen to people who are better at it than I, and actively seek their guidance. Because I sweat through the hard parts and the actual, sometimes terrific pain, and I don’t quit even when I want to, and I make it a priority even when there are also a billion others – and so I get stronger and more stable around the injury with every passing month. I also get faster, because with practice and experience of things going right, I inhabit my body in the water with more relaxed trust & pleasure – and trust & pleasure = speed.)

 
 
Because I have come so far so fast, and I know there is further I can go.
 
 
Because early this spring I had a cancer-scare, after losing many, many beloveds to that vile disease in the last decade. After the initial “you’re kidding, right?” my soul answered that cancer-scare clearly and strongly with “I want to live,” so now I’m stuck with living large, because anything else feels wasteful and stupid. (I was prone to that sort of living already, and tend to be pretty fierce about it: I just had a fire lit under me to reach further, harder, faster, with even more body-focused intent – and setting the triathlon relay as both a personal goal & a way to give back to my community fit.)
 
 
Because I love swimming, and always have. Because the far wall – or shore – has called my name sweetly since I was born, and when possible, I have always answered.
 
 
 
Because I am chased by ghosts. Because some of those ghosts love to swim.
 
 
Because in many ways, for many reasons of loss, I was dead a year ago – and resurrection doesn’t come cheap.
 
 
 
Because mostly, this return to water and strength is made of joy.
 
 
Because sometimes, it’s also made of terror and aloneness, and I don’t like to let fear win. I would rather reach past it, long and relaxed, and pull myself through glinting wet, mistaken by a heron for a weird-looking seal.
 
 
 
* * *
 
 
So here’s what matters:
 
You don’t actually know what’s happening under the skin of those around you. You don’t know what costs they pay for what they accomplish, or why they are willing to pay them. So if they invite you to bear witness to their lives, try not to blow it. If they invite you into their joy, say yes.
 
Or don’t. But don’t presume you know.
 
 
* * *
 
 
Here’s the rest of that definition I give my students about critical thought and why it matters; why it has ethical implications for us as humans beings among human beings:
 
Critical capacity requires the ability to hold that more than one thing is simultaneously true – it also requires humility.
 
Humility means being teachable. Being right-sized. Being one among many who are not the same as you. To be grounded in the rich, dark soil (the humus, which is the root of the word humility) that holds all the nutrients required for life to thrive.
 
 
* * *
 
 
Some words from another swimmer, which I’ve carried close since they came to me right when I was getting back into the water – cautiously, full of fear that did not stop me – seven months ago:
 
 

“But I knew a secret they did not. We are all swimmers before the dawn of oxygen and earth. We all carry the memory of that breathable blue past.
 
It is possible to carry life and death in the same sentence. In the same body. It is possible to carry love and pain. In the water, this body I have come to slides through the wet with a history. What if there is hope in that.”
 
- Lidia Yuknavitch, The Chronology of Water
(Hawthorne Books, 2011)

 
 
What if, indeed.
 
And what if, in addition to hope, there is willingness to reach long, even when it’s really freakin’ hard?
 
 
That’s an inspirational poster I can put on my wall.
 
 
 
 

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