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

The post Stroke Me Day 75: Sitting With Discomfort appeared first on I Will Dare.

Darling Ones,

I had a stroke in the wee small hours of Monday morning. While the stroke is considered small, the disruption to my life is enormous.

Fortunately, my speech and cognition have escaped unharmed. Unfortunately, the limbs on the right side of my body have suffered. I have to use a walker to get to and from the bathroom because I’m so wobbly.

My coordination and fine-motor skills are shit at the moment. Typing takes a lot of effort and requires so much back-spacing.

I’m too down in it to appreciate that even being able to type four days after a stroke makes me lucky.

As I get stronger, I’ll share more of my story. I haven’t yet decided how much medical detail I want to reveal. Right now, I’m super emotional and totally overwhelmed. I went to bed Sunday night and woke up Monday disabled, even if it might be temporary. It’s a lot. Reckoning with my unconscious ableism is taking some work. So is relinquishing a lot of my beloved independence.

Sisters #2 & 4 are here with me now, and we’re figuring out what I need to remain independent.

It all sucks and I hate it! And on top of it all, I missed my eye appointment so I still can’t see.

Boo to everything.

More when I’m up for it,
Jodi

The post I Had a Stroke appeared first on I Will Dare.