Uphill battles

On disability, plus some links I loved

Hi, friends! The majority vote from last week's post about links roundups was to include some at the bottom of each week's post, so I'm trying that out today. I think it will feel more manageable come the end of the month, and also more expansive, as it leaves room to showcase each one a bit better. I've included a quote from each, and I hope this will help you find what speaks to you most.

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I recently had a conversation with my friends in our group chat about how I can't get my five-year-old, Sybil, off the bus on my own on half days or early dismissals.

This is because, on those days, instead of the short bus that normally brings her up to our driveway at the top of the hill on our dead end street, she rides a big bus, which drops her off at the bottom, requiring that I walk down with my youngest in order to get her and then walk with both of them back up the hill.

I'm sure this might not seem like a big deal to many people, and even as I type this, I'm feeling the immediate need to over-explain the many reasons, big and small, why it feels impossible.

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Photo by Aleks Dahlberg on Unsplash

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One of my friends understandably asked why I can't manage the hill, and I gave what I felt was the most reasonable and straightforward answer, which does play a major role; my POTS¹ makes it difficult for me to stand or walk sometimes, let alone to walk down the hill and wait for the bus for an unknown period of time with nowhere to sit, before walking us all back up.

Another friend understandably asked if there was medication for that; there is, but the idea of taking medication to raise my blood pressure while on birth control (or at all, if I'm completely honest) makes me anxious, so I haven't felt comfortable trying it yet.

And not only that, but my POTS was really only one of the reasons that this hill feels insurmountable right now.

Another is that having to take my toddler with me worsens my anxiety, because Oren is 100% the type of kid who would run away from me. On regular days, I wear him in our Tula so that I don't have to worry about it, but it's also hard on my body carrying the extra weight even for that short time without extra exertion, and it wouldn't work for going all the way down and up the hill.

"Yeah I just feel like if it's that debilitating it's not a great way to live your life. Sounds really limiting and a lot on Jon.”

This message in response to my explanations was followed by a bunch of well-meaning suggestions for how to make it easier - suggestions that honestly made a lot of sense, and which my brain immediately hardened against for one reason or another.

And while I'm genuinely certain that no one meant it that way, I also have years of internalized ableism, so what it felt like they were all saying to me was, "it sounds like your disability sucks and makes you a burden to your husband, so you should probably try to not be disabled."

How do I explain to my friends that things I used to do without thinking, or that I could have at least muddled through, now often feel impossible?

The truth is, underneath the physical barrier and my anxiety, there's another significant reason I'm not able to do something as seemingly simple as getting my daughter off the bus.

It's the same reason I have hardly cooked in the last few years, and (at least partly) why my house is such a wreck, and why I had a chronic illness flare the day of my daughter's birthday party, and why I can no longer drive without having a panic attack…

My year of autistic burnout in 2022 came with significant skill regression - not, I think, for the first time, but worse than any time before - which I'm only now beginning to understand the depth of.

Skill regression is a “loss of previously developed skills” which can affect things like executive functioning, ability to tolerate being overstimulated, and social skills.²

It's hard to figure out how to say this to people without feeling like they'll just assume I'm lazy or not trying hard enough, or that I'm making excuses. And while I don't believe my friends would intentionally think that about me, I do know how difficult it can be to truly understand problems you've never experienced yourself.

I hate that I'm not able to drive my kids around and do fun activities with them. I hate that I'm so easily overwhelmed, and that I have to lean on my husband so much. I hate that the only way to improve it is to slowly rebuild those skills.

And while I know it's possible to do so - as well as to build a tolerance for exercise that will allow me to walk up the hill I live on with my POTS, and also to work on my anxiety - I also know all of this will take time, and will require me to care for myself well, to rely on support, and to be kind to myself in the meantime.

I've found myself so frustrated that there is no apparent accommodation for situations like mine, on school days that differ from the regular schedule. I know I cannot be the only parent who lives in an area that big busses can't get to and who can't easily get to the next closest stop.

Having to rely on my husband to leave work to pick up our daughter on every snow day or scheduled half day means eating up a lot of his PTO, which already goes so quickly toward taking me and the kids to various appointments.

It means there's little left for him to take time just for himself, or for us to do things as a family when circumstances would otherwise allow. It means extra strain on him as a parent, and on our relationship.

Because of course his job has no built-in accommodation for this either.

He's not allowed the flexibility to work from home, or to leave briefly for an occasional midday bus pickup, or to come home a bit early when necessary. His last boss was more understanding and flexible with him, but he was forced to switch departments at the beginning of this year.

It's infuriating that our circumstances make this problem even more difficult.

And perhaps even more infuriating is that I still find myself feeling shame about not being able to just do more.

We deserve better. I deserve better.

And in many ways, I'm one of the lucky ones, because at least I'm now aware of the causes of my limitations and am learning how to accommodate myself as well as possible, not to mention that my disability varies widely and may not always be so disabling.

There are so many people who are disabled without even knowing it because our society is so hostile toward disability (and simultaneously ignorant of it), meaning that many experiences of struggling to meet social expectations of functioning and productivity are seen as moral or personal failings rather than the disability they are.

Even those who are aware of their disability and understand what they need frequently suffer unnecessarily from a lack of protections and accommodations.

So, I guess here's another reminder that accessibility matters, that words matter, and that sometimes disability might not look how you'd expect, and people deserve accommodations anyway.

Links I Loved

• First up (and somewhat related to today's post) is this post about what people with chronic illness need by

  Emily Beatrix
  :

“Many of us will suffer through inconceivable amounts of pain because we have no help available to us, or are scared to be resented if we ask for it and actually receive it.”

• Charlie Rewilding
  wrote an ode to thinking on paper that reflects my love of notebooks so beautifully:

“My notebooks are, in fact, not only a place for documenting my identity and my self but a tool for discovery of these things.”

• These seven seasons of sharing by

  Luisa Skinner
  are such a holistic collection of what feeds our creativity:

“There tends to be one active step, followed by a more passive one, but feel free to ‘one-two-skip a few’, as I often do. To scrawl out one step and replace with another. To circle back and put your feet up awhile, sitting comfortably next to your favourite season like a familiar companion. It’s yours, just as it is mine. A gift.”

• A clean slate, with your own face on by

  Katherine May
  is about talking to her son about Sylvia Plath and examining our heroes:

“All the wrong lessons are taught in the conversations we do not, and will not, hold. We live in an HD age, all the flaws of those we admire enlarged across our screens. What do we learn about these people now: that we should have no heroes? Or that heroes were never supposed to write roadmaps for our lives in the first place?”

• This piece about the paradox of bravery: when letting go is holding on by

  Casper Moore
  also feels very much in line with my post today:

“It has to be hard, it’s going to be hard and if I really want things to get better, to feel better, it’s going to feel pretty fucking shit for a while… but stoicism isn’t the answer either. I don’t need to ‘fix’ anything right now… but a break from it all would be nice though.”

• This story about why I write by

  Lisa Jensen
  is so relatable:

“Would I rather keep telling myself this cute little story about how I could have been a writer, or would I rather get to the end of my life and look back and see that I’d actually tried?”

• Next, look at just how far you've come with

  Anne Vally
  :

“It occurs to me that making something by hand teaches us all kinds of great things. Like persistence, because making something by hand is almost always slower than buying it in a store. It also teaches that we’re competent. It embeds the feeling of competence in our bodies, so even if we aren’t thinking we’re good at something, our hands know we are.”

• And finally, a pep talk from

  Maggie Smith
  on not stopping:

“I hope you turn down the volume on your inner critic today—and tomorrow, and the next day, and the next—and just make something. It doesn’t have to be perfect. It doesn’t have to be better than the last thing you made or the next thing you’ll make. It just has to be yours. That’s enough.”

I hope that if you're fighting a similar uphill battle, you're able to find some ease and joy and rest. And as always, feel free to share if this resonated with you!

1. Postural orthostatic tachycardia syndrome - generally speaking, this means that in certain postures (or from certain postural changes) my body has difficulty pumping the blood to my brain quickly enough, and I get light-headed.

2. Disclaimer: I chose this link because it describes the issue well and didn't appear to be full of ableism - I can't vouch for the rest of the website or the doctor himself.

https://kennethrobersonphd.com/autistic-regression-and-burnout-descriptions-of-life-on-the-spectrum/