Tools and Nails

By Rro Novak

"Because she hadn't learned to be disabled yet,"

writes Danish, disabled poet Caspar Eric in his book Nike, and I think:

Yes, I haven't learned that either.

I have spent years scavenging tools to support me when things fell apart again and again. Most days I stood with nothing but duct tape and zip ties in my hands, trying to build a barricade against a life that seemed to come at me like a freight train laden with gifts I had neither asked for nor understood. Duct tape and zip ties are useful in a pinch, but do not make solid foundations to rely on. So, when my mother died suddenly, they strained and snapped. The barricade I had built to protect myself broke down and I saw what it had blocked from view; that I had been teetering on the edge and found myself about to tumble into the abyss. I used what I could reach to keep myself on the right track. I built railings along fragile bridges with timber left behind by others. And yet the train came by like clockwork and knocked me off into the water below. Disoriented and exhausted I began with reaching for what was most obvious and saw a big blaring light to guide me in my fall. I visited doctors and asked them to search for what I had been told would catch me: diagnosis and cure. Though I was tested and prodded and scratched, I was ever only given half-hearted answers and instable ladders with an instruction to start climbing back toward normalcy, but my arms were shaking and my feet found nothing but pain on every rung.

Buffeted by the waves after yet another splash I stopped trying to clamber back onto the rails and instead looked for something heavy to anchor me and found a sledgehammer. I used it to bash

and bash

and bash

and bash

and bash

and bash

and bash

and bash

and bash

and bash

and bash

at what had overwhelmed me,

at what had caged me in,

at what pushed me up against the wall.

Having found a tool to give me agency, I wielded the sledgehammer as often as possible. I used it to destroy every ladder tempting me to ascending back to the perilous track I was on.

I said no, no, no and no.

I stayed home.

I quit my job.

I made no plans.

“No” felt productive.

Powerful.

Empowering.

A breakdown can have many names: chronic pain, disability, neurodivergence - labels I have later come to attach loosely and impermanently to the gifts I was given.

My bashing created glittery dust scattered in the wind.

Settling into stillness.

Its beauty created a relief sorely missed.

And exhaustion was its companion.

A strain of muscles the result.

It turns out a hammer is not the right tool for staying afloat and so it began to drag me underneath the foaming surface.

If the only tool you have is a hammer, every problem becomes a nail.

So the saying goes at least.

But I had not been given a user manual with warnings of overuse.

And nails abound.

Sticking out in crooked angles.

Tearing your sleeve as you try to slip by.

So, I went searching again. But how do you go out searching for something you do not know the shape of?

This time I did not bother with doctors but asked all those who were struggling in the waves besides me. Some had already started their own collections and were willing to share.

My metaphors get jumbled up, chewed through and spit out in a mush, that is impossible to untangle. Because that is what abandoning the tracks feels like. You have to stay in the water, where everything you write turns out to be porous. Every page seeped through with the effort of navigating the currents. Paper will become soggy in the fog, but the words might still stand out clear enough to be help you keep swimming.

“The next step will be shoe inserts”

Caspar writes about his fears of aging in a disabled body, and I am surprised that he is resisting giving his body this tool for support, because my own impulse is shame. Shame when I reject the tools given to me. Shame when what I am trying to assemble breaks down. I want to learn how to deal with my limitations, but instead I cling to what drags me down. So, I berate myself for being unserious. Like a 6-year-old who is too tired to admit that they are tired. Like an old lady who doesn't want to move out of the house even though she hasn't been able to go up to the first floor for the last 3 years. Like a CEO who can't take a vacation because he fears remembering everything he's forgotten to prioritize. I do not think of myself as disabled, but I am also not not-disabled. Like everyone else I am a cliché corporealized.

I own shoe inserts. And practical boots with ankle support. And sneakers with plenty of space for my toes. They are all black and thick soled and waterproof. They all look like the practical choice they are. But I also own white sneakers with a green stripe down the side. When I wear the cool sneakers with too narrow toes, too thin soles and no support, my toes, knees and hips hurt, and I berate myself for this choice. But aren't those sneakers good for my confidence? Good for my mood. Good for the way I see myself in the mirror. Aren't those sneakers an illusion. An illusion about the choice. About it being my responsibility to be healthy and pain free. Who do I owe this? Besides myself?

Of course,

I deserve to be pain-free.

I also deserve to look cool.

I also deserve to make stupid choices.

I've always been bad at the stupid choices.

The choices that lead to unforeseen adventures and new experiences.

Can I stop telling myself that it's shameful that I haven't learned to be not not-disabled yet? I want to give myself the same permission to be as I am, that I give others. (Although I must admit that I also sometimes find it difficult to give it to others - but of course I would never say it out loud.

I do not want to be the one telling you what to do. Instead, I want to be the one who tells you that we are not obliged to take care of ourselves. Health is not a moral imperative. And I try to believe it for myself too.)

I practice saying “yes”. And it's easier to say “yes” in the cool sneakers.

In the cool sneakers I will give myself permission not to have to be on top off it.

Permission to do things I know are bad for me just because I want to.

Permission to make bad decisions.

Permission to be in a bad mood.

Permission to yell at drivers when I have to swerve my bike out of their way because they forget to check the blind spot before turning right – and I fear for my life once again.

Permission to not always forgive my friends right away when they cancel our plans.

Permission to complain about the neighbours who can't figure out how to sort their garbage in the proper recycling bin.

Permission to blend in with my couch and be swallowed by a series I have seen too often already.

Permission to abandon the “not-notness” and instead claim disability.

Permission to stop looking for diagnosis, cure and the right tools. The tools that will make me productive. Will make me function. Will gather me into an acceptable shape.

I want to gift myself this permission but having given myself permission I use it to keep quiet, to forgive, and I smile, let go of my anger and continue my search. And one moment being not not-disabled feels like everyday life, easy like reading a book in the sun and the next like a never-ending mountain hike, where I'm always the one trying to catch up. Every evening arrives with an exhaustion from trying to keep pace with the world.

Another day begins as I open my eyes, and my sunlight alarm clock is already at its brightest. My bed is warm, and soft and comfortable. I am not ready to move from horizontal to vertical yet. I turn on my blue-tooth speaker and choose a soft piano play-list: A transitional tool, to guide me from one state of being to another. Like a clockmaker's miniature screwdriver, it slots into my grooves perfectly and turns something inside me.

Things begin running smoothly.

I lie down on my spring green acupressure mat: another kind of nails.

Softened but prickly enough to get the blood flowing.

15 minutes of breathing.

Blue streaks begin to appear on the sky outside my window.

Stretching.

Breathing.

As the journey continues, my backpack begins to bulge with the tools I have gathered - a bungling, hulking thing to carry around, that immediately outs me. But I am beginning to be grateful for its size as every tool I add seems to subtract its weight from the collection in what feels like a magic trick. While the clockmakers screwdriver might not subtract much from the sledgehammer, maybe one day when the collection has grown multifaceted and light enough it will carry me up to the peak of the mountain. When I am no longer the one struggling to keep up, I will enjoy how stillness dissolves pleasantly and something is growing in the rubble left behind by my bashing. In those quiet moments I want to use the time gained to prepare a picnic for those who are still struggling with the weight of their luggage.