DIY palliative care

Do It Yourself (DiY) Palliative Care

I swear this is a post about DIY palliative care. But just hang in here with me for a minute while I tell a story that seems completely unrelated on the surface, but that my weird brain has connected to this scenario somehow.

Auditioning for dance jobs, I struck out a lot. It left me feeling down, doubting my own ability, wondering if I should throw in the towel. Then me and my friend Diane Yang (affectionately known as DiY) said, “Fuck it.” Since the jobs weren’t come to us, we made up our own.

So we started practicing in each other’s tiny apartments, coming up with choreography and cutting together mixes of popular music. We didn’t have much money to take classes, but when we did, we’d come back and share the moves with each other, building them into our dances and modifying and molding them into something new.

In the middle of the summer after I graduated from NYU, Diane got a gig dancing backup for a K-pop singer trying to break into the US club scene. Diane needed another dancer to book the gig (me), and we needed to come up with all the choreography. The shows were starting in three days in Boston.

We did it, and out of it that, we built a little company. We started bringing in other dancers to practice with us, paying for rehearsal time and dancing together with a group of friends and semi-known dance acquaintances for free. We booked quite a few paying gigs, but at the end of the day suffered from lack of long-term vision. Diane and I both didn’t want to commit to running a dance company at that time, and we had slightly different visions for what the purpose of our dance group really was. Honestly, looking back, the purpose was just to get dancing again and to bait ourselves with small job carrots we’d share among our friends.

Impulse Dancers, circa 2002

But a funny thing happened when we started our company. We also started booking more of our own jobs. Diane’s acting portfolio was growing, and I was coming back from auditions with more “yeses” than “nos.” Our DIY dance company ended up doing exactly what we wanted it to do: jump-start our own careers by keeping us inspired and persevering through the darker times.

This very long dance story comes courtesy of being just a little high right now (thanks, cannabis oil). But it’s a parable, you see. A dance metaphor that powerfully connects to the actions I’m taking right now, which are to take my health into my own goddamned hands and stop being such a victim of the system.

Last week, I wrote about a palliative care doctor who seemed to lack the sensitivity chip, and who missed the boat on the entire point of palliative care, which is to care for the whole patient through a particularly difficult illness. Instead of jump-starting my personal health, she decided to focus on my mortality and let me know, over and over, that my time is limited. Her entire appointment was basically this:

A doctor can really do this to her patient with no consequence? Sure, if no one speaks up. Guess who’s sick of not speaking up about stuff?

This gal.

I have had it with all kinds of bullshit, and that includes making excuses for people in the positions of helping other people because THERE MUST BE SOME REASON why they’d be so inhumane. I’m sure there is. The point is, I don’t care.

So from now on, when a cancer obstacle wants to get in my way, I’m going to dance parable all over it. My palliative care experience was shitty, eh? Well then I’ll just have to start my own program, bitch! And on top of that, I’m going to work so that future patients don’t get fucked in the head by this kind of nonsense, starting with reporting Devil Woman to her superiors. I don’t want her fired. I want her to gain some empathy by listening to why her approach is unfounded. If she’s willing to listen. If not…then yeah, fire her ass.

So I emailed my doctor. I wrote about her on my blog. I emailed the Stanford Oncology board to ask if this is a common approach for palliative care (Spoiler alert: it’s not). And then I pulled up a notebook and started writing.

Notice the telltale lefty smudge

I wrote about what I did, ate (gotta work on this one), meds I took, symptoms I felt, physical activity, and what I’m feeling. I’ve been doing this every day, and it’s a wonderful way to keep an eye on all those things my palliative care doctor was supposed to keep an eye on.

As I write, I find myself adjusting my behavior, reminding myself to refill meds that I might have forgotten about a week ago, looking up programs for activity so I can write about them in my journal. I’m going to keep cataloging this and collecting a bunch of resources along the way. And I will happily share my efforts and resources with anyone who needs them.

Now I have a record of changes, ever-so-slight, going back days and weeks, and I can use this as data to help move my case in the right direction. Should I have to do this? No. No one should HAVE to. But for those who want to take things into their own hands until the better jobs come along, this is a really good way to stay motivated, stay inspired.

When in doubt, do like DiY and me: fake it until you make it.

green of skin, black of heart

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