Do You Know What the World Says to Sick People When We Are Sick?

This is FACT, so grab a notebook, Blues Clues…. Be ready.

This was hard to do BUT… because I am currently recovering from this double cervical spine surgery and can’t be typing (yet), here is some footage of right before surgery when I made up two combinations for when I’m back from all of this in mid-summer… Without my editing out the bad parts or part I’ll probably change or mess ups or anything. This first one is the worst because you see my very real reaction at the end, to my husband (filming). At the bottom, you get a combo that ends another way (scroll to discover)

I said….

“If I dance… I suffer for a week. If I type… I suffer for days. If I take a bath… I suffer for days. If I drive a car… I suffer for a day. And most of these things add up to what we see now: ‘You need your neck discs replaced’” and the other surgeries down the barrel but…

Do you know what the world says to sick people when we are sick?

This is FACT, so grab a notebook, Blues Clues…. Be ready.

They say: “What did YOU do to cause this inconvenience?”

“Why would you dance?” we imply, as doctors say, “Thank goodness you’re still dancing through all of this somehow. You’ve kept your lungs so clear.”

“Why would you prolapse a uterus and your colon?” (But then we say: ‘Be a mother Be a mother Be a mother Be a mother’)

Everything- even the things the world has deemed more ‘valuable’ to it than other things (like procreating versus art, or paychecks versus creating, and so on)- comes with a cost if you’re someone who pays a pain price for continuing to exist.

And so… some days, I open my eyes, and I feel whatever cost has befell me, and I think with increasing frequency every single year: “How do I keep doing this?”

And I don’t have an answer. So if you need one, apologies. There is none to be found here. I just…. keep doing it. But we want to blame someone from afar. “Why doesn’t she eat more protein? This is her fault”. And yet we also want life to be productive (“Why isn’t she a move active mother?”) but then also to not ‘cause’ what we hold the sick person accountable (“How dare she keep working right now". Surgeries should be the only priority”).

A sick person can’t afford groceries, and we still say that.

“It’s like being a cancer patient but if people didn’t know what cancer was?” I said to the friend, which I know is going to offend someone who doesn’t know what sick life is when its this filled with ORs and fake parts, but those who know me and those I know with cancer- we get it. We aren’t offended.

Because- hear me out- this many surgeries and complications for a decade is something that often comes with like… a break.

But how we treat someone who continues to be ill? That is very very different. (Which includes cancer patients who continue to be ill, obviously.)

There is a time limit on patience… and it makes sense to me.

I am the same. But some of it… most of it… is also self inflicted.

“I definitely have my pride and try to look tough… so some of that is my fault (most of that is my fault?) - hiding things and downplaying - but if we share TOO much as women, then people think we are weak and can’t be leaders and that backfires too. So the balance pops up again. You know?” I said, caring a lot about being able to continue to create a safe environment in the arts that can maybe change some of the toxic parts of art in some small way, and that very much includes being a thin-veil of a person.

“I’ll share by writing and still downplay… and people will say comments about over-sharing and I want to laugh. But I keep writing because people with tubes and weird robot parts will say to keep going … but it’s not my only ‘why’. Worth it…

But my ‘why’ is at such a cross roads.”

What is your why right now?

I need to know why, please… Don’t ask me why.

Maybe it helps the cross-road just feel more like a road.

This combo didn’t work well with my body that day, my inability to do some of the movements post lower spine fusion (haven’t figured out how to make turnout happen yet) and our slipper floor (FEAR!)… and you see it with the chaotic ending that misses the mark, lol. Try to spot the moment when I forgot what I was doing but then found it again, so kept going (haha)

This is embarrassing to share these things without trimming out the imperfections but… I guess that’s why I’m writing here? It’s a different space to share?

Part Four. Final “Part”: Fini!

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