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(indistinct chatters)

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- One thing that I have 
learned through the years

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that's been absolutely amazing

4
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in helping me communicate about 
having an autoimmune disease

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is spoon theory.

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What spoon theory says is 
that most regular people

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can just wake up

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and they'll have the energy to 
do the things they need to do

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to get through their day.

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

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But when you're dealing 
with chronic illness,

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you have a limited 
amount of energy.

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And most people say you 
have about 12 spoons,

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and each spoon represents 
a unit of energy.

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So a day with my spoons 
might look like this.

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

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What? You might be saying,

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you spend a spoon 
just to wake up.

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I don't even think about it.

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Yes! One spoon, showering,

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and heaven forbid I have 
to wash my hair or shave,

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especially above the knee too,

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add a couple more spoons.

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One spoon, eating breakfast.

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One spoon, taking my meds

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and dealing with the 
side effects for the day.

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One spoon, driving to work.

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Better hope the roads are good.

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One spoon, walking to my office.

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It is 0.6 miles 
from where I park

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to where I park my 
butt for the day.

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So for those of you 
keeping track at home,

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I am just sitting 
down to start work

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and I have spent 
half of my spoons.

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So now I start work, 
they usually say 
about a spoon per hour

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depending on what 
you do for work,

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so a couple spoons goes to work.

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Then I might wanna 
get some lunch,

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and all of a sudden

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I start to have to make 
really hard decisions

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for the rest of the day.

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I have to work a few more hours.

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And, you know, even sitting 
there for a long time

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can really cause a lot of pain.

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I know that seems silly,

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but really sitting in the same 
position is hard on my body.

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And I mean, no matter what, 
I still have to drive home,

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and evening rush 
hour is always worse.

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And then when I 
get home, I mean,

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I probably wanna make a meal.

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And maybe it's 
like super healthy,

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so I'm doing a lot of 
chopping and stuff.

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And then, you know, 
I wanna do dishes,

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and I should probably like do 
laundry and clean the house,

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and heaven forbid I wanna 
spend some time with friends

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and have some fun.

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And the story is,

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there are just 
never enough spoons.

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And in March of 2020, 
I mean, I'll be honest,

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I had a pretty great setup.

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I was working part-time.

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I only went into the office 
every Monday and Tuesday,

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and then I worked from 
home the rest of the week.

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And, you know, my coworkers 
like they were like okay,

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they weren't great 
about remembering

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to dial me into 
meetings all the time,

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'cause I was the only 
one not in the office.

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

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

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And she said, "You 
should go home.

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You don't want that to get you."

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

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All of a sudden, something 
sort of magical happened.

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(chuckles)

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

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

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

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We're all wearing our pajamas. 
It doesn't matter why.

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And all of a sudden, every 
show, every conference,

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everything was online.

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And here's the thing,

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this is what my 
new days look like.

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One spoon, waking up.

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

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

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and start working.

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I work for a couple of hours.

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And then when I'm ready 
to, I go downstairs

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and I make some 
food for breakfast,

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save enough to eat 
for lunch later.

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

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

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

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And it really does 
make a difference

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if I get the choice of when 
I do this during my day.

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(all laugh)

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And then, you know, I can 
work for a couple more hours,

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and I can move 
around as I want to.

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So I'm not getting sore, I'm 
not getting this brain fog,

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I'm feeling good.

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And, you know, in the afternoon

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I can take my dog 
out for a walk.

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And holy crap you all, if 
you're keeping track at home,

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I still have a bunch 
of spoons left.

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I can have dinner.

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

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And I still like have a spoon

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to deal with the 
stress of the pandemic

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without totally tapping out.

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(audience laugh)

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And so the best thing 
about all of this

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was everyone was in it with me.

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Nobody was judging 
my situation anymore.

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There was a lot to 
appreciate during that time.

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I realized about a month in

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that I actually didn't 
have any pain anymore,

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'cause I was so in 
control of how I moved.

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And I'm definitely 
not saying this

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to like minimize the terror 
of the pandemic, right?

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'Cause I was like, holy 
crap, scared of dying

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every second of every 
day for a lot of months.

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(chuckles)

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But,

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over the last year,

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I've had to mourn all over again

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as a lot of these 
opportunities disappeared.

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And, you know, some 
things have stayed

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or been added on as permanent 
features and that is amazing.

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But it's a little different, 
because once again,

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we're not all in it together.

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Once again, there are haves 
and there are have-nots,

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and life is navigating 
lots of hard choices

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and constantly feeling 
judged by them.

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And you never know what 
people are dealing with.

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I'm invisible while in pain.

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I'm invisible while on fire.

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I will keep my blaze burning.

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Thank you.

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(audience applaud)

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- [Announcer] This program 
was produced in collaboration

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with the Center for 
the Art of Medicine

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at the University of 
Minnesota Medical School.

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And funded by the Minnesota 
Arts and Cultural Heritage Fund

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and the citizens of Minnesota.

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(calm music)