WEBVTT 00:00.533 --> 00:04.066 align:left position:10% line:5% size:80% (indistinct chatters) 00:04.066 --> 00:06.333 align:left position:10% line:5% size:80% - One thing that I have learned through the years 00:06.333 --> 00:08.233 align:left position:12.5% line:5% size:77.5% that's been absolutely amazing 00:08.233 --> 00:12.000 align:left position:10% line:5% size:80% in helping me communicate about having an autoimmune disease 00:12.000 --> 00:13.733 align:left position:10% line:5% size:80% is spoon theory. 00:13.733 --> 00:17.500 align:left position:10% line:5% size:80% What spoon theory says is that most regular people 00:17.500 --> 00:19.066 align:left position:10% line:5% size:80% can just wake up 00:19.066 --> 00:21.666 align:left position:12.5% line:5% size:77.5% and they'll have the energy to do the things they need to do 00:21.666 --> 00:23.166 align:left position:10% line:5% size:80% to get through their day. 00:23.166 --> 00:24.966 align:left position:10% line:5% size:80% And they don't have to think about it very much. 00:24.966 --> 00:26.900 align:left position:10% line:5% size:80% But when you're dealing with chronic illness, 00:26.900 --> 00:29.900 align:left position:10% line:5% size:80% you have a limited amount of energy. 00:29.900 --> 00:33.366 align:left position:10% line:5% size:80% And most people say you have about 12 spoons, 00:33.366 --> 00:36.200 align:left position:10% line:5% size:80% and each spoon represents a unit of energy. 00:36.200 --> 00:39.300 align:left position:10% line:5% size:80% So a day with my spoons might look like this. 00:40.500 --> 00:44.833 align:left position:10% line:5% size:80% I wake up in the morning and I spend one spoon. 00:44.833 --> 00:46.033 align:left position:10% line:5% size:80% What? You might be saying, 00:46.033 --> 00:47.633 align:left position:10% line:5% size:80% you spend a spoon just to wake up. 00:47.633 --> 00:49.366 align:left position:10% line:5% size:80% I don't even think about it. 00:49.366 --> 00:53.166 align:left position:10% line:5% size:80% Yes! One spoon, showering, 00:53.166 --> 00:56.533 align:left position:10% line:5% size:80% and heaven forbid I have to wash my hair or shave, 00:56.533 --> 00:58.533 align:left position:10% line:5% size:80% especially above the knee too, 00:59.533 --> 01:02.200 align:left position:10% line:5% size:80% add a couple more spoons. 01:02.200 --> 01:05.600 align:left position:10% line:5% size:80% One spoon, eating breakfast. 01:05.600 --> 01:08.066 align:left position:10% line:5% size:80% One spoon, taking my meds 01:08.066 --> 01:10.600 align:left position:10% line:5% size:80% and dealing with the side effects for the day. 01:10.600 --> 01:13.066 align:left position:10% line:5% size:80% One spoon, driving to work. 01:13.066 --> 01:14.700 align:left position:10% line:5% size:80% Better hope the roads are good. 01:14.700 --> 01:16.866 align:left position:10% line:5% size:80% One spoon, walking to my office. 01:16.866 --> 01:19.433 align:left position:10% line:5% size:80% It is 0.6 miles from where I park 01:19.433 --> 01:21.766 align:left position:10% line:5% size:80% to where I park my butt for the day. 01:21.766 --> 01:24.433 align:left position:10% line:5% size:80% So for those of you keeping track at home, 01:24.433 --> 01:26.933 align:left position:10% line:5% size:80% I am just sitting down to start work 01:26.933 --> 01:30.466 align:left position:10% line:5% size:80% and I have spent half of my spoons. 01:30.466 --> 01:34.933 align:left position:10% line:5% size:80% So now I start work, they usually say about a spoon per hour 01:34.933 --> 01:36.533 align:left position:10% line:5% size:80% depending on what you do for work, 01:36.533 --> 01:38.700 align:left position:10% line:5% size:80% so a couple spoons goes to work. 01:38.700 --> 01:41.900 align:left position:10% line:5% size:80% Then I might wanna get some lunch, 01:41.900 --> 01:43.233 align:left position:10% line:5% size:80% and all of a sudden 01:44.400 --> 01:46.433 align:left position:10% line:5% size:80% I start to have to make really hard decisions 01:46.433 --> 01:47.800 align:left position:10% line:5% size:80% for the rest of the day. 01:47.800 --> 01:50.100 align:left position:10% line:5% size:80% I have to work a few more hours. 01:50.100 --> 01:53.133 align:left position:10% line:5% size:80% And, you know, even sitting there for a long time 01:53.133 --> 01:55.766 align:left position:10% line:5% size:80% can really cause a lot of pain. 01:55.766 --> 01:57.266 align:left position:10% line:5% size:80% I know that seems silly, 01:57.266 --> 02:01.933 align:left position:12.5% line:5% size:77.5% but really sitting in the same position is hard on my body. 02:01.933 --> 02:04.933 align:left position:10% line:5% size:80% And I mean, no matter what, I still have to drive home, 02:04.933 --> 02:07.833 align:left position:10% line:5% size:80% and evening rush hour is always worse. 02:07.833 --> 02:09.166 align:left position:10% line:5% size:80% And then when I get home, I mean, 02:09.166 --> 02:10.966 align:left position:10% line:5% size:80% I probably wanna make a meal. 02:10.966 --> 02:12.433 align:left position:10% line:5% size:80% And maybe it's like super healthy, 02:12.433 --> 02:14.166 align:left position:10% line:5% size:80% so I'm doing a lot of chopping and stuff. 02:14.166 --> 02:16.333 align:left position:10% line:5% size:80% And then, you know, I wanna do dishes, 02:16.333 --> 02:20.000 align:left position:10% line:5% size:80% and I should probably like do laundry and clean the house, 02:20.000 --> 02:23.000 align:left position:10% line:5% size:80% and heaven forbid I wanna spend some time with friends 02:23.000 --> 02:24.000 align:left position:10% line:5% size:80% and have some fun. 02:24.000 --> 02:26.833 align:left position:10% line:5% size:80% And the story is, 02:28.166 --> 02:30.366 align:left position:10% line:5% size:80% there are just never enough spoons. 02:31.833 --> 02:34.766 align:left position:10% line:5% size:80% And in March of 2020, I mean, I'll be honest, 02:34.766 --> 02:37.366 align:left position:10% line:5% size:80% I had a pretty great setup. 02:37.366 --> 02:39.666 align:left position:10% line:5% size:80% I was working part-time. 02:39.666 --> 02:42.666 align:left position:10% line:5% size:80% I only went into the office every Monday and Tuesday, 02:42.666 --> 02:45.333 align:left position:10% line:5% size:80% and then I worked from home the rest of the week. 02:45.333 --> 02:47.666 align:left position:10% line:5% size:80% And, you know, my coworkers like they were like okay, 02:47.666 --> 02:49.200 align:left position:10% line:5% size:80% they weren't great about remembering 02:49.200 --> 02:51.633 align:left position:10% line:5% size:80% to dial me into meetings all the time, 02:51.633 --> 02:54.166 align:left position:10% line:5% size:80% 'cause I was the only one not in the office. 02:54.166 --> 02:58.266 align:left position:10% line:5% size:80% And on March 10th, my boss came to visit me in my cubicle. 02:58.266 --> 03:03.400 align:left position:10% line:5% size:80% We can hear people like coughing and sneezing all around me. 03:04.500 --> 03:06.600 align:left position:10% line:5% size:80% And she said, "You should go home. 03:06.600 --> 03:08.666 align:left position:10% line:5% size:80% You don't want that to get you." 03:08.666 --> 03:13.433 align:left position:10% line:5% size:80% Seven days later, everybody was sent home for two years. 03:15.166 --> 03:19.733 align:left position:10% line:5% size:80% All of a sudden, something sort of magical happened. 03:19.733 --> 03:21.233 align:left position:10% line:5% size:80% (chuckles) 03:21.233 --> 03:24.400 align:left position:10% line:5% size:80% All of a sudden, everyone was at home all the time. 03:24.400 --> 03:26.833 align:left position:10% line:5% size:80% All of a sudden, I'm invited to every meeting. 03:26.833 --> 03:29.233 align:left position:10% line:5% size:80% All of a sudden, we're all on camera. 03:29.233 --> 03:33.200 align:left position:12.5% line:5% size:77.5% We're all wearing our pajamas. It doesn't matter why. 03:33.200 --> 03:37.333 align:left position:10% line:5% size:80% And all of a sudden, every show, every conference, 03:37.333 --> 03:39.866 align:left position:10% line:5% size:80% everything was online. 03:41.000 --> 03:42.533 align:left position:10% line:5% size:80% And here's the thing, 03:47.433 --> 03:49.166 align:left position:10% line:5% size:80% this is what my new days look like. 03:51.233 --> 03:54.666 align:left position:10% line:5% size:80% One spoon, waking up. 03:54.666 --> 03:56.166 align:left position:10% line:5% size:80% I can tell it's gonna be a rough day. 03:56.166 --> 04:00.066 align:left position:10% line:5% size:80% So I just stay right where I am and I pop my computer open 04:00.066 --> 04:02.266 align:left position:10% line:5% size:80% and start working. 04:02.266 --> 04:04.266 align:left position:10% line:5% size:80% I work for a couple of hours. 04:05.300 --> 04:07.166 align:left position:10% line:5% size:80% And then when I'm ready to, I go downstairs 04:07.166 --> 04:09.233 align:left position:10% line:5% size:80% and I make some food for breakfast, 04:09.233 --> 04:11.933 align:left position:10% line:5% size:80% save enough to eat for lunch later. 04:11.933 --> 04:14.466 align:left position:10% line:5% size:80% And, you know, then I come back and work again. 04:14.466 --> 04:17.133 align:left position:10% line:5% size:80% And if I'm feeling good enough, I can take a shower. 04:17.133 --> 04:18.900 align:left position:10% line:5% size:80% But honestly, like, I don't have to. 04:18.900 --> 04:22.433 align:left position:10% line:5% size:80% And it really does make a difference 04:22.433 --> 04:25.833 align:left position:10% line:5% size:80% if I get the choice of when I do this during my day. 04:25.833 --> 04:28.000 align:left position:10% line:5% size:80% (all laugh) 04:28.000 --> 04:31.633 align:left position:10% line:5% size:80% And then, you know, I can work for a couple more hours, 04:31.633 --> 04:34.100 align:left position:10% line:5% size:80% and I can move around as I want to. 04:34.100 --> 04:37.433 align:left position:10% line:5% size:80% So I'm not getting sore, I'm not getting this brain fog, 04:37.433 --> 04:38.800 align:left position:10% line:5% size:80% I'm feeling good. 04:38.800 --> 04:40.000 align:left position:10% line:5% size:80% And, you know, in the afternoon 04:40.000 --> 04:42.133 align:left position:10% line:5% size:80% I can take my dog out for a walk. 04:42.133 --> 04:45.666 align:left position:10% line:5% size:80% And holy crap you all, if you're keeping track at home, 04:45.666 --> 04:48.633 align:left position:10% line:5% size:80% I still have a bunch of spoons left. 04:48.633 --> 04:50.133 align:left position:10% line:5% size:80% I can have dinner. 04:50.133 --> 04:52.633 align:left position:10% line:5% size:80% I mean, I can get online and play games with friends. 04:52.633 --> 04:54.633 align:left position:10% line:5% size:80% And I still like have a spoon 04:54.633 --> 04:56.500 align:left position:10% line:5% size:80% to deal with the stress of the pandemic 04:56.500 --> 04:58.166 align:left position:10% line:5% size:80% without totally tapping out. 04:58.166 --> 05:01.133 align:left position:10% line:5% size:80% (audience laugh) 05:01.133 --> 05:05.200 align:left position:10% line:5% size:80% And so the best thing about all of this 05:06.700 --> 05:09.233 align:left position:10% line:5% size:80% was everyone was in it with me. 05:09.233 --> 05:13.000 align:left position:10% line:5% size:80% Nobody was judging my situation anymore. 05:13.000 --> 05:17.533 align:left position:10% line:5% size:80% There was a lot to appreciate during that time. 05:17.533 --> 05:18.800 align:left position:10% line:5% size:80% I realized about a month in 05:18.800 --> 05:21.200 align:left position:10% line:5% size:80% that I actually didn't have any pain anymore, 05:21.200 --> 05:24.366 align:left position:10% line:5% size:80% 'cause I was so in control of how I moved. 05:24.366 --> 05:25.833 align:left position:10% line:5% size:80% And I'm definitely not saying this 05:25.833 --> 05:28.033 align:left position:10% line:5% size:80% to like minimize the terror of the pandemic, right? 05:28.033 --> 05:30.733 align:left position:10% line:5% size:80% 'Cause I was like, holy crap, scared of dying 05:30.733 --> 05:33.133 align:left position:10% line:5% size:80% every second of every day for a lot of months. 05:33.133 --> 05:33.966 align:left position:10% line:5% size:80% (chuckles) 05:33.966 --> 05:34.866 align:left position:10% line:5% size:80% But, 05:36.466 --> 05:38.366 align:left position:10% line:5% size:80% over the last year, 05:39.500 --> 05:41.200 align:left position:10% line:5% size:80% I've had to mourn all over again 05:42.533 --> 05:44.800 align:left position:10% line:5% size:80% as a lot of these opportunities disappeared. 05:45.866 --> 05:47.866 align:left position:10% line:5% size:80% And, you know, some things have stayed 05:47.866 --> 05:52.866 align:left position:10% line:5% size:80% or been added on as permanent features and that is amazing. 05:54.366 --> 05:57.966 align:left position:10% line:5% size:80% But it's a little different, because once again, 05:57.966 --> 05:59.700 align:left position:10% line:5% size:80% we're not all in it together. 06:01.100 --> 06:05.766 align:left position:10% line:5% size:80% Once again, there are haves and there are have-nots, 06:06.900 --> 06:09.400 align:left position:10% line:5% size:80% and life is navigating lots of hard choices 06:09.400 --> 06:11.433 align:left position:10% line:5% size:80% and constantly feeling judged by them. 06:12.766 --> 06:15.433 align:left position:10% line:5% size:80% And you never know what people are dealing with. 06:15.433 --> 06:18.633 align:left position:10% line:5% size:80% I'm invisible while in pain. 06:19.766 --> 06:23.933 align:left position:10% line:5% size:80% I'm invisible while on fire. 06:25.600 --> 06:28.600 align:left position:10% line:5% size:80% I will keep my blaze burning. 06:29.933 --> 06:30.900 align:left position:10% line:5% size:80% Thank you. 06:30.900 --> 06:33.633 align:left position:10% line:5% size:80% (audience applaud) 06:38.600 --> 06:41.033 align:left position:10% line:5% size:80% - [Announcer] This program was produced in collaboration 06:41.033 --> 06:42.766 align:left position:12.5% line:5% size:77.5% with the Center for the Art of Medicine 06:42.766 --> 06:45.266 align:left position:10% line:5% size:80% at the University of Minnesota Medical School. 06:45.266 --> 06:48.600 align:left position:10% line:5% size:80% And funded by the Minnesota Arts and Cultural Heritage Fund 06:48.600 --> 06:50.433 align:left position:10% line:5% size:80% and the citizens of Minnesota. 06:51.366 --> 06:53.933 align:left position:32.5% line:5% size:57.5% (calm music)