How I Resist while Disabled
February 7, 2017 by Julie Negrin
How do we stay calm in the midst of a crisis?
How do we set aside emotions that blur our thinking?
How do we stay hopeful when our world is collapsing around us?
Like people trapped in a car that’s gone over a bridge, the water level is rising. Some people are in denial. Others are fruitlessly banging on window that will never budge.
I don’t want to act. I want someone to save me.
Or, I want to let myself sink to the bottom and let go.
But. I do neither.
It frustrates me, this urge to fight. I’ve spent most of my life feeling ashamed of it.
Why can’t I be like everyone else? Just accept things the way they are? Why is the path of least resistance so hard for me to walk down?
Why can’t I just say “I’m not healthy enough for this” and stay quiet.
My plan this winter was to finally rest.
After three years of non-stop stress, I was going to paint, write, do yoga, and find weird but amazing healers.
Now here we are. This Resistance work is exhausting. I feel too old for this shit. But I can’t just stay home and knit. Even if that’s the logical decision for my body. I just can’t.
As challenging and tiring as this Resistance work is, it fires me up. It gives me somewhere to channel my fear, my frustration, my helplessness.
It allows me to forget my own fucked up situation.
I finally broke down and got IV infusions at home instead of the hospital on Sunday.
While everyone else was drinking beer and watching football, I was learning how to not kill myself while flushing the port needle in my chest.
While everyone else was fighting online about who is right and who is wrong, I was warming a large bag of saline in my lap so it wouldn’t be so cold when it entered my body.
While everyone else was nibbling on leftover super bowl snacks, I was drinking my second jar of chicken broth hoping the fish I ate the day before wouldn’t get stuck in my intestines.
My little world is weird.
And now the outside world is even weirder.
I know the home infusions is a good thing. A great thing, really. It will give me flexibility, freedom and some other f-word I can’t think of right now. (Oh I just thought of a good one. Hey now, I still have my sense of humor!)
But it also makes me feel like another f-word that I haven’t written about yet.
I feel like a freak of nature. I always have, truth be told. My shock of red hair as a kid. My Jewishness in a mostly white world. My inability to do what is “expected.” My urge to fight for what is right.
But nothing, NOTHING has made me feel more like a freak of nature than what’s happened to my body these past few years.
Losing four organs.
Surviving on a mostly liquid diet.
Requiring IV fluids each week.
Finding ways to make sure I can poop.
My body doesn’t work right and I do everything in my power to fix it.
But this new administration doesn’t care about me.
I don’t matter to them. Even though I dedicated my career to teaching kids. Even though I’ve been paying into the system for 30 years. Even though I ended up with four cancers after being a health nut for my entire life.
I DO NOT MATTER TO THEM.
None of my fellow disabled or medically dependent patients matter to them.
All they care about is money and power.
All I care about is staying hydrated and eating solid foods in the near future.
And now, for the first time in my life, my freakishness might be an asset.
My freakishness AND my urge to fight for vulnerable people puts me in a unique position right now.
How can I stay silent if I can make a difference?
How can I put my own needs before my tribe if sharing my story gets people to listen?
How can I NOT try and do everything in my power to help people that are under attack from heartless leaders?
So I Resist.
Because that’s what I’ve been doing for the past three years: Resisting. Resisting dying. Resisting going nuts. Resisting giving up.
I’ve gotten really, really good at resisting.
And now, it’s time to take those lessons and use them for the greater good.
I spend my time researching, strategizing, and collaborating with allies.
I stay up late reading article after article, contemplating my next move, my next plea, my next call to action.
I don’t know why all of this is happening at the same time as I am adjusting to this disabled body.
All I know is that I will go down fighting.
Even if this administration gets it’s way – and I don’t think they will if we keep at it – I would rather die fighting every step of the way than to hide until it’s over.
Even if it means I will have enemies. Even if it means I never make it to yoga. Even if it means I don’t have time to relax.
Because eventually, like healing, resistance eventually gives way to liberation. It’s slow. And it’s hard to see. But it’s possible.
And that is why I Resist.
Are you with me?