In this house (that is my mind)

In this house (that is my mind) we believe…

No one is illegal on stolen land

Black lives matter

Love is love

Trans people are divine

All bodies are equal

And on and on it goes…

But… it doesn’t matter what your ideologies or ethics are when it comes to constantly being subjected to the “isms“ of the world. Some of it will creep in. It will be internalized and it will become a toxicity that we hold in our body. Without intentionality and diligence, it will begin to dictate even the ways in which we see and judge ourselves. It is such hard, sometimes unbearable, work to prevent or undo this.

In the case of today’s story, I’m referring to ableism. A phenomenon that Amundson and Taira explain as, 

A doctrine that falsely treats impairments as inherently and naturally horrible and blames the impairments themselves for the problems experienced by the people who have them.

I’d be so bold as to add, in many instances, society blames more than the impairment. It blames the person. Man, if I wasn’t confronted with that in a big way this past 48 hours… Ableism is a vicious creature and it’ll make you hate yourself.

I had an incredibly busy but fulfilling weekend ahead of me. Lots to accomplish, personally and professionally, and plans for some sun and fun with my love.

It started with waking up Saturday and finally doing what my internist had asked me to do for weeks which was go to a lab to get a bunch of blood drawn to try and narrow down if an autoimmune disease is the cause of some of my chronic health problems.

I don’t have a good excuse for putting it off except that it honestly is really hard for me to leave the house these days. That was particularly true on Saturday as I had woken up with some bad anxiety. I needed to take two of my hydroxyzine pills in order to be regulated enough to finally leave the house. 

We drove all the way to the doctor’s office, after having called to confirm things, just to be turned away and told we will have to come back another time. For most people it would’ve been a minor inconvenience and they would’ve gone about their day. For me, it meant bursting into tears the moment I stepped outside of their office because it took so much effort to leave the house in the first place just to fail. And I do mean fail because I always find it easier to lay the fault at my own feet – logic be damned.

To cheer me up Matt took me to the park so I could lay in the sun. I put on a cute bathing suit, took some fun photos, and then dozed on a blanket while he video chatted with his family abroad. It was all of less than two hours but it was lovely. Until it wasn’t.

I’m on a bunch of new meds again and each of them causes dizziness, dehydration, and sun sensitivity. I felt like I was on the verge of passing out when I got home and I was pretty much done for the day. I really needed to rest because Sunday was going to be an even busier day.

We’re a part of a mutual aid group here in DC and Sunday was the monthly mutual aid block party. We signed up to help transport goods and then go work the event.  For eight years in DC much of my work has taken me out of the city that I love to other parts of the country. Matt and I have been intentional and trying to invest in our own community and build relationships right here.

This event was important to me so what happened next really broke my heart. I lasted maybe 45 minutes putting toiletry bags together in the heat before my back injury started screaming and dizziness set in from my meds reacting to the sun and heat. I did what a lot of us with chronic issues do which was ignore the early warning signs and try to push through. I tried to compensate by downing water, sitting on a stool, resting on the curb etc. When my vision started blurring and I began to feel incoherent I finally broke and had to go sit in the car. I diligently watched the radio clock to track my absence from the group. I only allowed myself five minutes of rest because I didn’t want to look “lazy”.

I lasted even less time during my second go around before I felt like I was going to fall over and Matt said he was taking me home. I was so angry at myself and so embarrassed. Every thought I was thinking echoed the messaging we let slide every day in our American society. That toxic internalized ableism was screaming in my head…

“What pathetic person can’t even last an hour in the sun?”

“You call bending over for 45 minutes hard work?“

“Are you even actually in pain or are you just deceiving to yourself because you don’t want to admit how lazy you are?“

“Great, you’ve just proven to your community how utterly useless you are.”

“People are going to see the photos of you in the sun from the day before and they’re going to call you a liar.”

“You don’t look in pain and, if there are no outward signs, you’re probably lying”

The internalized ableism from my chronic pain was co-mingling with the hyper self-critical symptoms of my mental health struggles. I can honestly say I felt some hatred towards myself in those moments. I couldn’t get over the feeling of having failed and embarrassed myself. Accusations I would never make of anyone else if they came and told me they were struggling in the same way. Intellectually, I understand how that different set of standards for myself doesn’t make sense but that knowledge does not yet translate into an embodied truth for myself.

In lieu of being able to stay and work, we offered to run some errands for the group – picking up and dropping off items from storage. I just wanted to feel like I was being useful and, quite frankly, I wanted to do whatever I could to make sure folks didn’t feel like I ditched them. I was worried about being judged and found selfish or useless. After all this, I made it home with 45 minutes left to spare before having two back to back emergency board meetings. They took anything I had left to give. I may have just been sitting in a chair but as anyone with chronic pain or illness knows, it is emotionally draining and brain fog is a major problem. These were not easy meetings for me.

Today, memorial day, was supposed to be our beach day. My husband knows how water and sun nurtures me emotionally and he’d planned a trip to the beach at the start of the weekend because of how exhausted I’ve been recently from prolonged bouts of anxiety and depression. 

I don’t think we’ll make it. Weekends like this can take me a week to recover from. I’m tired to my very core and worried that the thing I love will just make me sick again. And, even as I write this, I’m still worried people will doubt my pain if I’m caught going outside again so soon. Besides, I don’t want to make the drive just to have to turn around and come home again. I’ll have to play it by ear as I do most things these days. Otherwise fun or lofty plans are made just to wake up and find…

I have a pain flare-up

Or one of my migraines

Or an anxiety attack

Or vertigo

And on and on it goes…

 Amundson, Ron; Taira, Gayle (2005). “Our Lives and Ideologies: The Effects of Life Experience on the Perceived Morality of the Policy of Physician-Assisted Suicide” (PDF). Journal of Policy Studies 16 (1): 53–57

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