Well, Darling Ones,

I did it. I popped my post-stroke wheelchair user (PSWU) concert cherry last night. It was John Cougar Mellencamp, and I’m glad I saved myself for him and the Mystic Lake Amphitheater.

Last night was many PSWU firsts. I ate inside a restaurant with friends. I met my social media friends Carrie & Kyle in actual life. I accidentally hit a very angry man with my foot because Jonas, my motorized wheelchair, didn’t stop as quickly as that guy did. Also, I cried during “Jack & Diane,” but there’s a 99% chance that would have happened pre-stroke.

The Coug’s was in fine form last night for a dude in his 70s, and he did a pretty good job of filling out the sprawling venue. The crowd in our area was super into the show and knew all the words to all the songs.

Sister #4 and I were particularly enamored with a guy and his wife a few rows down from us. This couple had to be in their late 70s or early 80s. He was a balding white-haired man with a lime-green polo tucked into the grandpa khakis pulled up to his nipples. He clapped and air-drummed to each song, frequently standing up to dance. If I could have stood I’d have put him in my pocket.

The second song he played was “Small Town” and he thanked the crowd for coming ALLLLLLLLLL the way out to Shakopee to see him. The amphitheater is 3.5 miles from Supergenius HQ according to google maps. In my head I was all, “you just got done singing about small towns, motherfucker. This is a small town.”

I still refuse to call Shakopee a suburb even though it’s been one for 25 years. It’ll always be a small town to me.

Before singing “Rain on the Scarecrow,” The Coug’s gave his little spiel about family farms and how they’ve even destroyed. My sister said, out loud, “Yeah, this used to be a farm” and at the same time I said, “we’re on an old farm right now!” The ladies next to us were not amused, but more on them in a second.

Maneuvering the show in a wheelchair was particularly easy for the most part. I’m still so new to wheelchair driving I want a giant STUDENT DRIVER sign for my chairs. Working a wheelchair is not easy. Ableism made me think it’s be easy peasy. Working a wheelchair in a massive crowd is even more difficult. Not only are people incredibly unobservant they’re probably like me and think wheeling around is simple, like walking is for most people.

We got to jump the security line and had special accessibility seating that required wristbands, which was pretty sweet. Because the Amphitheater was built roughly 10 minutes ago (not even kidding), the sidewalks were smooth and there were ramps and an elevator that took us to the right level. We only discovered the elevator situation after doing the ramps, which were a little terrifying. Jonas isn’t as deep as Ruby Vroom (my manual wheelchair) so when going down inclines I’m convinced I will fall out at any second. Some of that feeling is probably tied to my constant-falling down feeling.

The only thing that wasn’t sweet were those ladies next to us in the accessible seating. This was an area on the edge of the second tier, fenced off from the rows of stadium seating. There were, I’m guessing sixteen seats in this area. Sister #4 and I had seats 15 & 16 and were at the end.

To get these seats you had to do a little digging on the site, according to my sister who bought my ticket. The rules clearly and repeatedly stated this was a section for wheelchair users and one companion. While the section had four or five wheelchair users aside from me, those ladies next to use were neither wheelchair users nor companions. They didn’t even use a cane or a walker! They were, however, with the four or five people in front of us in the non-accessible seating.

My sister was salty about this from the get-go and the more I thought about it the angrier I got. While I know there are many invisible ways to be disabled, these seats were specifically for wheelchair users. The wristbands even had a wheelchair person on them. And if they weren’t going to be for wheelchair users they should have gone to big and/or tall people since the chairs were armless and movable. These small, entitled white ladies should have sat in the regular seats with the rest of the hoi polloi. At one point Ms. Entitled #1 pulled a Shark Chill Pill fan and was cooling herself with her feet up on the fence. I wanted to smash the fucking thing on the cement.

Can you imagine having such audacity coupled with disrespect for wheelchair users to think you deserve that seat just because you wanted it? I’ve spent today putting so many hexes on those two women. No more green lights. They’ll never enjoy a fresh, crunchy potato chip in their favorite flavor again. They will have to wash all their clothes twice because they will never remember to put them in the dryer the first time.

Don’t mess with the Spinster Goddess of Minnesota.

Love,
Jodi

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Hi Darling Ones,

Yesterday I got a new set of wheels. The wheels are not attached to the red Jeep Wrangler of my teenage dreams. There was no giant bow. Instead, I got a generic Mediline wheelchair paid for by my poor people’s insurance.

Happy Birthday to me?

My birthday isn’t until next week so technically there is time for my head to clear, my right side to stop being a dick, and someone to buy me a car. But, if I’m being honest, I’d rather get LEGOs, plants, and records for my birthday. Cars are overrated.

Darling Ones, I am struggling with this latest development. My internalized ableism has crashed into my fat-trauma and they have leveled me. I worry people will think I’m too fat or too lazy to walk. Hell, half the time I worry if I’m “disabled enough” to warrant using a wheelchair, which is ridiculous. All of it is. Who cares if I do and why? I don’t scrutinize wheelchair users. In fact, I give them no more thought than I do blondes or someone wearing a hat. It’s something I notice and then move on.

I’m embarrassed that I need one. I feel like I failed. All I’ve wanted since the stroke was to be able to walk again. Well, walk for more than 90 seconds unassisted. You can want something with your entire heart and do everything you can to achieve it and still fail. I know this and yet. . . it still packs a wallop when the failure comes with wheels.

On my less charitable days I call myself lazy. I chastise myself for not trying hard enough. I tell myself it’s all in my head, because it literally is. Sometimes I wonder if maybe I’m making it all up.

But then I check in with my body and the wooshiness is always there. It’s better on some days than others, depending on how well I’ve slept. The almost dizziness plus lightheadedness and that feeling you get the moment you start to fall is my constant companion. It’s there no matter what I do, even if all I’m doing is sitting in a chair typing.

On my better days I’m in awe of all I can accomplish with this annoying distraction always in my head. I cook and clean and crochet and take care of cats and do laundry and even write all while the weird thing is happening in my head, even while my eyes struggle to stay focused. What I can do is amazing.

Last night I managed to move my king-size bed about three inches away from the wall so I could fit my stool next to the bed making it easier to put new sheets on. It was so hard and it took forever, but I did it. I did it!

And I will do this too. I will be a wheelchair user and it will be okay. I already went through all the red tape to get it. My mom is thrilled about it. The Tea Ladies can’t wait to pick me up so we can all go for coffee. I know the wheelchair is a good thing and will allow me to get back out into the world, but right now I kind of hate it.

Life would be so much easier if things were more cut and dry. All one thing or another. Maybe that’s what I should wish for. . . but I still think I’d rather have LEGOs.

Your dream on a mean machine with hell in her eyes,
Jodi

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Hi Darling Ones.

Last night I finished the Catghan for my nephew-in-law.

This is a momentous occasion for many reasons.

1. His birthday was in April.
2. It is, according to my semi-reliable record keeping, the 30th blanket I’ve made.
3. It is the FIRST thing I’ve finished since my stroke.
4. I started this before my stroke and worked so hard on it the night before my stroke I wrote off my right-arm weakness as a crochet injury.
5. It’s super cute (full blanket pics to come when my mom & Sister #4 are here and can hold it up for me).

My reward for meeting my deadline has been a semi-lazy day spent not crocheting. As someone who is basically homebound it would seem all my days are semi-lazy, but they’re not. It takes a lot of energy to think about all the things you used to be able to do, you could be doing, and the ones you’re avoiding. It’s exhausting.

To celebrate my semi-lazy day I put on an 80s pop playlist and got work crushing candy, looking up broccoli salad recipes, blitzing emojis, and cleaning & dicing peppers. It’s been nice.

While mindlessly going about my business Taylor Dayne’s “Tell it to My Heart” came on. I was, of course, singing along out loud when I had the thought, Why did I lose my ability to walk unassisted and retain this song?

Nothing against Ms. Dayne. It’s a fine song. My brain loves it, clearly. But I bet plenty of people lead full and fulfilling lives without the ability to recall those lyrics.

As I’m writing this I realize millions of people live full & fulfilling lives without the ability to walk. Just another case of my inherent ableism coming out to bite me in the ass. That shit goes deep, doesn’t it?

My daydreamy, ableist little thought experiment went this way: what would I trade to be able to walk “normally” again?

For some reason I decided it would probably be some kind of pop culture effluvia stuck in brain that I could do without.

In my magical thinking it was a tradeoff. The part of my brain filled with “Ferris Bueller” quotes for regained balance. It made sense in the moments as I was dicing orange peppers.

Being able to recite e.e. cummings or Edna St. Vincent Millay has never gotten me laid. Having every line of “High Fidelity” and “Almost Famous” has never gotten me a job.

“Livin’ on a Prayer” just came on. Does anyone care I know Tommy used to work on the docks, and the union’s been on strike?

A bit ago Steve Winwood’s “Higher Love” played. I hate that fucking song. I’d trade knowing the lyrics to that for just about anything. Never stubbing my toe again or my glasses never falling down my nose.

Just some aimless rambling on a Saturday afternoon.

I could rise above on a higher love,
Jodi

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Dear JusticeIs21@protonmail.com,

It was great to wake up to your email this morning, August 6, 2023. Exactly five months ago today, on March 6, 2023 I woke up feeling wrong, the right side of my body kinda wonky. I’d learn later that day that I had a Cerebral Vascular Accident (CVA), what is commonly called a stroke.

Part of me feels badly for you. No one deserves a wallop of pain like that.

But part of me feels like this is your comeuppance, this is karma, this is what happens when you’ve been cruel, petty, and judgmental, gossiping about and being malicious toward others with disabilities or mental-health struggles.

And that’s the part of me that won out tonight. You wouldn’t and haven’t thought twice about being a dick.

So yeah, this email was a great way to mark this occasion. Since you are too cowardly to put your name on your viciousness, I don’t know if I have been a jerk to you in the past.

Against the advice of the people who love me best (sorry, EM), I am responding to your email in public. I know your kind of anonymous cruelty is unworthy of my attention, but my best/worst trait is how I love to die on all the hills. ALL OF THEM. The smaller and pettier, the better.

I don’t know a lot about Hinduism and karma, but I’m pretty sure this is not how it works. I don’t think the universe sends a debilitating stroke to people for being a dick. If that’s how it worked most Republicans and Turnip himself would have had much bigger CVAs.

Where did you get the idea that I’ve “been cruel, petty, and judgmental, gossiping about and being malicious toward others with disabilities or mental-health struggles”? I have zero doubt that in my past I have been thoughtlessly cruel. I was not the best version of myself in the 90s.

But recently? Say in the last 10-15 years? I don’t think so.

I don’t have it in me to be intentionally cruel. I’ve lived my whole life in a body deemed other, or as one doctor told me, “a statistical anomaly.” I’ve been bullied and suffered from intentional cruelty for as long as I can remember. I’m not the kind of person who wants others to suffer as I have. I’m the exact opposite. It’s why I so passionately believe student loans should be forgiven even though I’ve already paid mine off.

To say I “wouldn’t and haven’t thought twice about being a dick,” is not true, especially when it comes to the disabled. I’ve spent the last four years or so actively trying to educate myself about disability. Here’s my partial reading list:
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann with Kristen Joiner; Easy Beauty by Chloé Cooper Jones; Autobiography of a Face by Lucy Grealy; A Face for Picasso: Coming of Age with Crouzon Syndrome by Ariel Henley; Sitting Pretty: The View from My Ordinary Resilient Disabled Body by Rebekah Taussig; Hidden Valley Road: Inside the Mind of an American Family by Robert Kolker; Disability Visibility: First-Person Stories from the Twenty-first Century edited by Alice Wong; and Golem Girl: A Memoir by Riva Lehrer.

JusticeIs21@protonmail.com, I have spent a lot of time thinking about my own ableism. I’ve said before that one of the hardest things about this stroke is reckoning just how ableist I was and am. I’m not perfect, but I’m working on it.

So, anonymous coward, I really hope you don’t believe a stroke “is your comeuppance, this is karma, this is what happens when you’ve been cruel, petty, and judgmental. . .” Because if it’s what you really believe you’re in for a doozy of a payback.

Sending that email was intentionally cruel and petty. I’m not sure what your intent was. Did you want to kick me when I was down? Did you want to make me feel somehow worse?

Sorry, I’m recovering from a stroke. It’s impossible for me to feel worse than I already do. I’ve been stripped bare. I’m an exposed nerve. I don’t have a lot of dignity or humility left, but at least I’m not the kind of asshole who intentionally tries to hurt people.

Love and kisses,
Jodi

The post Re: Your Stroke appeared first on I Will Dare.

Hi Darling Ones,

Author and vlogger Hank Green has Hodgkin’s Lymphoma. He announced it in a video recently and hooooooboy did a lot of what he say resonate deep into my bones.

At one point he talks about how he’s struggling with having this new identity thrust upon him. He wants to continue being goofy science guy and not cancer guy.

He has exactly and succinctly explained that feeling I’ve been unable to nail down, though I have tried unsuccessfully.

I keep saying I’m bored with all the things related to my stroke. Being bored and/or boring is the deadliest sin the Book of Jodi. I’ve had panic attacks due to feeling trapped and bored. This is why I dread long guitar solos at concerts. They induce panic attacks in me. I once had a panic attack during a — I swear to Ellen Willis — twenty-minute version of “Watching the Detectives” that had me sitting on the venue floor. Low once did a 17-minute guitar drone at Rock the Garden and I will never forgive them.

When I was in the depths of my lightheaded-panic attack cycle, the physical therapist supervisor who was evaluating me asked if I felt trapped and bored, wondering if that was contributing to my misery.

It wasn’t.

After watching the Hank Green video, I’ve come to believe it’s not boredom I’m struggling with, but the new identity thrust upon me and how I am interpreting that.

I do not like being Stroke Woman. I do not like being needy, helpless, scared, and timid Woman. I super-hate being obsequious, nervously-chattering, super-cheerful in an attempt to charm people so they don’t shame me or make fun of my body Woman.

Being Stroke Woman also means being the earned the motherfucking toughest purple band in occupational therapy Woman. The did the thing even though it’s scary Woman. And, as one of my clients said yesterday, “did in 10 minutes what would have taken me hours. And did it with one bad arm” Woman.

But as wise sage Vivian Ward said in Pretty Woman, “the bad stuff is easier to believe.”

All this goes hand-in-hand with struggling with my internal ableism and trying to reckon with the fact that no matter how hard I try I may not fully-recover. I may be Floppy Scoops Woman for the rest of my life.

And you know what, Darling Ones? That sucks. It just sucks. Some times you can do your very best and still fail. Such is the way of the universe.

I miss being Rock & Roll Loving Dies on Every Hill Spinster Book Nerd. I’m sure at some point I’ll integrate all the women.

Right now I’m chafing against my Stroke Woman identity. It’s uncomfortable. Sitting with discomfort is difficult and feeling my feelings is hard. I hate it. I much prefer to intellectualize my feelings because that’s easier.

I will have more to say about this video later. Right now, I’m supposed to be doing work I procrastinated on while Sister #4 naps (she’s in town to house hunt and taken me to the retina specialist on Monday).

Your favorite Rebellious Stroke Woman,
Jodi

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