You can have a happy, fulfilled, luxe life even in a miserable, painful, cursed meatsack.
Your body is a nightmare. Your life doesn't have to be.
Welcome to Imperfect Working Order—where we survive capitalism while sick and do it as fancily as possible, running microbusinesses, smooching hotties (well, one hottie, currently), and rolling with our MEeps.
Here are some pressing realities (don’t worry, there’s an uplifting message after this slog):
I feel like I was in a car accident. With food poisoning. I wasn’t, that’s just normal. Almost always. Sometimes worse.
I’m down to two functioning teeth. They hurt. A lot. Chewing is two hours of my day, every day.
I can’t walk for more than a few minutes. I can’t drive for more than 15.
If I type this post too long, I’ll migraine out for the rest of the afternoon.
I can eat about 10 ingredients, which I have to cook from scratch twice a day.
In the past ten years, I’ve funneled hundreds of thousands of dollars into medical treatment that went nowhere, while often only making a poverty-level AGI. I didn’t have major savings or free housing. I’ve never been supported by a partner (and was single for most of it.)
There’s more, but you get the gist: I’m limited, hurting, broke, and suffering in most physical life areas. There’s little relief, and no safety net.
That all sucks. I grieve it constantly. AND…
Here are some other delightful realities:
I live in a colorful, cozy apartment with huge windows, a million-dollar view, free radiator heat, and a deep clawfoot bathtub where I luxuriate in $12 bath bombs. (Future posts will talk about how to swing solid, comfy housing. Should we call them Crip Cribs? Okay no. Accepting ideas.)
My hilarious friends bring me into their fun, with silly voice note check ins to occasionally towing an extra Kira-kayak around a lake. (Future posts will teach you how I built community when I was too shot to even get my own groceries.)
Every day, a sweet retired gentleman in my building brushes all the snow off my car before I wake up. (Again. Community. I can help.)
I wear comfortable flattering clothes, bling out in ethical handmade jewelry, and generally feel like a classy bitch. (Future posts will talk about how to own nice things that make you feel good even if you can’t “afford” them—without debt, shoplifting, or unsavory arrangements.)
I work on dream projects and earn a pretty penny for minimal work. (Will absolutely be showing you how to start a high-payoff microbusiness.)
I have no debt. None. Nada. Zip. (Despite paying $200k+ in medical bills out of pocket while never making more than about $40k in my pre-disability years and definitely going to New Zealand and Mexico instead of like, saving. No major inheritances or robberies. Didn’t have a partner supporting me financially, either.)
I’m now dating a sweet, supportive, funny, wildly intelligent man who thinks I’m hot stuff even while I belch like a teen boy. No, there’s nothing wrong with him. Yes, you can have a fulfilling relationship even while sicker than crap. Obviously we’ll be discussing how.
All this to say…the good stuff doesn’t fix the truly terrible stuff.
The truly terrible stuff stops me from MOST of what I wish I could be doing.
I grieve. A lot. VALID.
BUT. The happiness is real. The joy is more, and more easily triggered, than in “The Before.” Despite living a mini-golf downsized seventh-choice version of the life I wanted, I’m still living a life I want. Richly, joyously, delightfully, in the circumstances I have.
And if you’re saying…
I don’t have the community
I don’t have the money
I don’t have the friends
I don’t have the energy
I don’t have the skills
I don’t have the gratitude
I don’t have the attitude
Just know: neither did I, when I started.
The life I have now is not one I could have imagined when I first became disabled.
The person I am now is not something I could have pictured, either.
We are always and ever changing. Even when our illnesses aren’t.
Let’s see who we become in 2025.
Do you struggle to explain how many spoons you have? NOT ANYMORE: enter, the Meatscon.
Note: I put zero thought into naming this (origin story here). It’s not a con(ference), it’s a scale! I made mine for my bestie and boyfriend and now I’m sharing it with you so you can dial in your own version. GITCHA ONE.
Love this. Hmm … from my view, it looks like many in the chronic illness community lack strong, stable families of origin, including me. I’d love to read about how you built your community - and if less-than-ideal family of origin was an issue for you, how you overcame it to do that building work (ie, learned to choose friend prospects well).
Can you write about responding to the neurological, brain concussion feeling, sensory sensitivity, cognitive dumbing shittery that happens?