Art + Medicine

(indistinct chatters) - One thing that I have learned through the years that's been absolutely amazing in helping me communicate about having an autoimmune disease is spoon theory.

What spoon theory says is that most regular people can just wake up and they'll have the energy to do the things they need to do to get through their day.

And they don't have to think about it very much.

But when you're dealing with chronic illness, you have a limited amount of energy.

And most people say you have about 12 spoons, and each spoon represents a unit of energy.

So a day with my spoons might look like this.

I wake up in the morning and I spend one spoon.

What?

You might be saying, you spend a spoon just to wake up.

I don't even think about it.

Yes!

One spoon, showering, and heaven forbid I have to wash my hair or shave, especially above the knee too, add a couple more spoons.

One spoon, eating breakfast.

One spoon, taking my meds and dealing with the side effects for the day.

One spoon, driving to work.

Better hope the roads are good.

One spoon, walking to my office.

It is 0.6 miles from where I park to where I park my butt for the day.

So for those of you keeping track at home, I am just sitting down to start work and I have spent half of my spoons.

So now I start work, they usually say about a spoon per hour depending on what you do for work, so a couple spoons goes to work.

Then I might wanna get some lunch, and all of a sudden I start to have to make really hard decisions for the rest of the day.

I have to work a few more hours.

And, you know, even sitting there for a long time can really cause a lot of pain.

I know that seems silly, but really sitting in the same position is hard on my body.

And I mean, no matter what, I still have to drive home, and evening rush hour is always worse.

And then when I get home, I mean, I probably wanna make a meal.

And maybe it's like super healthy, so I'm doing a lot of chopping and stuff.

And then, you know, I wanna do dishes, and I should probably like do laundry and clean the house, and heaven forbid I wanna spend some time with friends and have some fun.

And the story is, there are just never enough spoons.

And in March of 2020, I mean, I'll be honest, I had a pretty great setup.

I was working part-time.

I only went into the office every Monday and Tuesday, and then I worked from home the rest of the week.

And, you know, my coworkers like they were like okay, they weren't great about remembering to dial me into meetings all the time, 'cause I was the only one not in the office.

And on March 10th, my boss came to visit me in my cubicle.

We can hear people like coughing and sneezing all around me.

And she said, "You should go home.

You don't want that to get you."

Seven days later, everybody was sent home for two years.

All of a sudden, something sort of magical happened.

(chuckles) All of a sudden, everyone was at home all the time.

All of a sudden, I'm invited to every meeting.

All of a sudden, we're all on camera.

We're all wearing our pajamas.

It doesn't matter why.

And all of a sudden, every show, every conference, everything was online.

And here's the thing, this is what my new days look like.

One spoon, waking up.

I can tell it's gonna be a rough day.

So I just stay right where I am and I pop my computer open and start working.

I work for a couple of hours.

And then when I'm ready to, I go downstairs and I make some food for breakfast, save enough to eat for lunch later.

And, you know, then I come back and work again.

And if I'm feeling good enough, I can take a shower.

But honestly, like, I don't have to.

And it really does make a difference if I get the choice of when I do this during my day.

(all laugh) And then, you know, I can work for a couple more hours, and I can move around as I want to.

So I'm not getting sore, I'm not getting this brain fog, I'm feeling good.

And, you know, in the afternoon I can take my dog out for a walk.

And holy crap you all, if you're keeping track at home, I still have a bunch of spoons left.

I can have dinner.

I mean, I can get online and play games with friends.

And I still like have a spoon to deal with the stress of the pandemic without totally tapping out.

(audience laugh) And so the best thing about all of this was everyone was in it with me.

Nobody was judging my situation anymore.

There was a lot to appreciate during that time.

I realized about a month in that I actually didn't have any pain anymore, 'cause I was so in control of how I moved.

And I'm definitely not saying this to like minimize the terror of the pandemic, right?

'Cause I was like, holy crap, scared of dying every second of every day for a lot of months.

(chuckles) But, over the last year, I've had to mourn all over again as a lot of these opportunities disappeared.

And, you know, some things have stayed or been added on as permanent features and that is amazing.

But it's a little different, because once again, we're not all in it together.

Once again, there are haves and there are have-nots, and life is navigating lots of hard choices and constantly feeling judged by them.

And you never know what people are dealing with.

I'm invisible while in pain.

I'm invisible while on fire.

I will keep my blaze burning.

Thank you.

(audience applaud) - [Announcer] This program was produced in collaboration with the Center for the Art of Medicine at the University of Minnesota Medical School.

And funded by the Minnesota Arts and Cultural Heritage Fund and the citizens of Minnesota.

(calm music)