WEBVTT - “I Feel So Wildly Lucky To Like Myself” 0:00:14.956 --> 0:00:15.436 Pushkin. 0:00:30.276 --> 0:00:34.796 The way I treated myself inside was like goodness was 0:00:34.996 --> 0:00:38.036 just around the corner. If I could make a few 0:00:38.076 --> 0:00:40.596 more right decisions, or work a little bit harder, or 0:00:40.596 --> 0:00:43.476 do things a little bit better, then my life would 0:00:43.516 --> 0:00:45.836 be good or I would be good like I didn't 0:00:45.836 --> 0:00:47.476 think I need to like myself for who I am. 0:00:47.516 --> 0:00:50.156 I thought I will eventually earn the reward of my 0:00:50.276 --> 0:00:51.156 own respect. 0:00:52.116 --> 0:00:55.916 Jessica Slice spent years waiting for that elusive day when 0:00:55.956 --> 0:00:57.836 she might actually like herself. 0:00:58.436 --> 0:01:01.956 For all those years, I thought that it was in 0:01:02.036 --> 0:01:05.996 my control to be perfect, or to form a perfect life, 0:01:06.076 --> 0:01:09.636 or to be good enough. And that is a message 0:01:09.676 --> 0:01:15.396 from the world, and disability is a counter argument. It's 0:01:15.436 --> 0:01:19.876 a way of saying everything we believe about what matters, 0:01:20.076 --> 0:01:21.996 or about what we should strive for, or about what 0:01:22.036 --> 0:01:24.996 we're capable of, like all of that may be wrong. 0:01:27.796 --> 0:01:31.916 On today's show, when we let go of society standards 0:01:31.916 --> 0:01:37.836 of goodness, who can we become? I'm maya Schunker, a 0:01:37.876 --> 0:01:41.716 scientist who studies human behavior. And this is a slight 0:01:41.796 --> 0:01:44.676 change of plans, a show about who we are and 0:01:44.716 --> 0:01:51.156 who we become in the face of a big change. 0:01:55.556 --> 0:01:59.236 Jessica Slice is an author who writes about living with disability. 0:01:59.716 --> 0:02:02.396 She's written multiple books and has been published in The 0:02:02.436 --> 0:02:06.396 New York Times, The Washington Post, The Atlantic, and The Guardian. 0:02:07.596 --> 0:02:10.596 Jessica and I began our conversation by talking about what 0:02:10.676 --> 0:02:14.476 she was like in her early twenties before she became disabled. 0:02:15.516 --> 0:02:20.756 I was a very high achiever. I was relentless in 0:02:20.796 --> 0:02:25.516 my striving. I started practicing real estate at twenty five 0:02:25.876 --> 0:02:29.436 and dove into that so thoroughly that within a year 0:02:29.476 --> 0:02:32.036 I had started a company with some other women. I 0:02:32.116 --> 0:02:35.636 was named one of the best realtors in the United States. 0:02:35.836 --> 0:02:39.796 Oh my god, Okay, yeah, it's so bizarre. And I 0:02:39.836 --> 0:02:43.356 was married to a high school sweetheart, I owned a company, 0:02:43.516 --> 0:02:46.156 was earning more money than anyone should in their twenties. 0:02:46.996 --> 0:02:51.556 But the thing that was really true about that time 0:02:51.916 --> 0:02:55.356 is that I was so hard on myself. Like the 0:02:55.396 --> 0:03:00.036 way I treated myself inside was like goodness was just 0:03:00.876 --> 0:03:03.196 around the corner. If I could make a few more 0:03:03.276 --> 0:03:05.676 right decisions, or work a little bit harder, or do 0:03:05.756 --> 0:03:08.836 things a little bit better, then my life would be good, 0:03:08.956 --> 0:03:13.476 or I would be good. And because that's not possible, 0:03:13.556 --> 0:03:19.236 because we can't actually will power ourselves into goodness, It 0:03:19.276 --> 0:03:22.476 made me just sort of hate myself, and I had 0:03:22.476 --> 0:03:28.476 this corrosive shame. I couldn't have identified it as shame, 0:03:29.796 --> 0:03:32.436 but I had this suspicion that I was so bad, 0:03:33.556 --> 0:03:36.276 and then the thing I was doing was trying so 0:03:36.276 --> 0:03:39.996 so hard to be good and to have a good life. 0:03:40.956 --> 0:03:45.556 Was that just a natural proclivity, natural disposition, or do 0:03:45.596 --> 0:03:48.756 you think there was something in the way that you 0:03:48.836 --> 0:03:51.756 grew up or some experience you had that gave rise 0:03:51.876 --> 0:03:56.116 to this concern that you were bad in some way. 0:03:57.276 --> 0:04:00.196 I experienced a lot of loss in my childhood. I 0:04:00.236 --> 0:04:04.436 had a sister die, I had friends die. I had 0:04:04.436 --> 0:04:06.436 a kid in my second grade class die, and then 0:04:06.516 --> 0:04:09.756 one in my fourth grade class, an uncle and a 0:04:09.756 --> 0:04:13.116 grandfather and a cousin all within a few years. I 0:04:13.156 --> 0:04:16.236 went to so many funerals before I was even a preteen, 0:04:16.676 --> 0:04:21.876 including that of my younger sister, and I think I 0:04:21.916 --> 0:04:24.596 had to come up with an explanation. And so it 0:04:24.636 --> 0:04:27.756 was like, these are bad things happening that must somehow 0:04:27.796 --> 0:04:30.436 be my fault, because little kid logic is always it 0:04:30.516 --> 0:04:34.116 must somehow be my fault, and so the only thing 0:04:34.156 --> 0:04:37.076 to do is to be better, to be a good kid, 0:04:37.076 --> 0:04:40.796 to be good, and so then I was just completely 0:04:40.836 --> 0:04:44.436 devoted to being good and that kind of propelled me through. 0:04:44.796 --> 0:04:47.756 You know, I was still just being good in my twenties. 0:04:48.756 --> 0:04:54.436 But the thing I did think very concretely was I'm 0:04:54.476 --> 0:04:58.876 going to figure this out. Like I'm still dissatisfied. I'm 0:04:58.916 --> 0:05:03.556 still not there. I still have this emptiness, but it 0:05:03.596 --> 0:05:06.316 was like there was always this thought that there was 0:05:06.396 --> 0:05:10.636 a way to get there and. 0:05:10.636 --> 0:05:14.156 This elusive feeling of goodness. How would you have defined 0:05:14.196 --> 0:05:16.676 it at the time, and what would it have felt 0:05:16.716 --> 0:05:18.476 like to feel good? 0:05:19.596 --> 0:05:23.156 I think I would have liked myself. I would have said, 0:05:23.836 --> 0:05:26.556 when I'm a better improved person, I like myself. Like 0:05:26.596 --> 0:05:28.316 I didn't think I need to like myself for who 0:05:28.356 --> 0:05:31.436 I am. I thought I will eventually earn the reward 0:05:31.516 --> 0:05:32.756 of my own respect. 0:05:35.196 --> 0:05:38.676 Let's fast forward to twenty eleven. You were in your 0:05:38.756 --> 0:05:41.556 late twenties and you and your husband at the time 0:05:41.876 --> 0:05:45.956 bought tickets to go on this epic cruise. Tell me 0:05:45.996 --> 0:05:49.356 about that trip and what your mindset was like going 0:05:49.396 --> 0:05:49.836 into it. 0:05:50.756 --> 0:05:53.996 Gosh, we built this trip up so much. It was 0:05:54.076 --> 0:05:57.676 this luxury cruise ship that was going to Turkey and 0:05:57.756 --> 0:06:01.396 Greece and Italy. We planned this for a whole year, 0:06:01.596 --> 0:06:04.076 like every moment of it was going to be perfect, 0:06:04.396 --> 0:06:07.356 and it's the perfect encapsulation of how I was living then, 0:06:07.436 --> 0:06:11.356 which is there there will be a time where life 0:06:11.436 --> 0:06:13.516 is finally what I thought it could be or what 0:06:13.596 --> 0:06:16.156 I could be. And this trip kind of held all 0:06:16.236 --> 0:06:19.636 this expectation in it. I mean I thought of what 0:06:19.676 --> 0:06:22.876 I was going to wear every day exactly, and which 0:06:22.996 --> 0:06:25.556 restaurants we would go to and which cities and what 0:06:25.676 --> 0:06:28.356 hikes we would take. It was like nothing has been 0:06:28.436 --> 0:06:30.756 planned more than that trip was. 0:06:31.556 --> 0:06:34.756 And so on the tenth day of your trip, you 0:06:34.796 --> 0:06:37.716 were out on a long hike and you started to 0:06:38.076 --> 0:06:42.036 experience some unusual symptoms. So what happened? 0:06:43.036 --> 0:06:45.476 So we were about a mile from the end, and 0:06:45.556 --> 0:06:50.516 I realized that we didn't have enough water, and I thought, Okay, well, 0:06:50.516 --> 0:06:52.556 this is too bad. I'm going to really need to 0:06:52.556 --> 0:06:55.836 rehydrate when we get to the village. But it felt 0:06:55.836 --> 0:06:59.676 like it would be a minor hiccup. But then we 0:07:00.236 --> 0:07:02.916 which it sounds very Greek mythy, but we encountered a 0:07:02.956 --> 0:07:08.276 pack of wild dogs blocking the path and they were 0:07:08.516 --> 0:07:12.516 like bare their teeth, and we had to add all 0:07:12.556 --> 0:07:16.756 this distance onto the hike to get around this pack 0:07:16.796 --> 0:07:20.076 of dogs, and adding that distance onto the hike meant 0:07:20.476 --> 0:07:22.396 that by the time we got to the village where 0:07:22.636 --> 0:07:26.236 I was going to get some food and water and recover, 0:07:26.476 --> 0:07:29.916 I was vomiting and felt really confused. I felt really 0:07:29.956 --> 0:07:33.036 out of it. I had this sense that I was 0:07:33.076 --> 0:07:35.716 sort of separate from the world. And then I just 0:07:35.796 --> 0:07:39.156 rested and I thought, Okay, well, i'll rest today, I'll 0:07:39.156 --> 0:07:42.236 be back tomorrow. And then I woke up the next 0:07:42.316 --> 0:07:47.036 day and it was like I had traded my body 0:07:47.116 --> 0:07:49.836 for a different body. I tried to get down the 0:07:49.876 --> 0:07:53.156 hall to the bathroom and could barely walk. The room 0:07:53.276 --> 0:07:56.996 was like spinning and like it was black around the 0:07:56.996 --> 0:08:02.396 outside of my vision. I just felt I felt so weak, 0:08:03.276 --> 0:08:06.276 and then I woke up every day for the rest 0:08:06.276 --> 0:08:08.876 of the trip almost entirely bedbound. I would try to 0:08:08.916 --> 0:08:10.756 do something and then just have to go right back 0:08:10.756 --> 0:08:16.676 to bed. Made at home, went to a doctor. All 0:08:16.756 --> 0:08:20.716 my blood tests were normal, and I felt no better, 0:08:21.556 --> 0:08:26.236 and I kept thinking every morning that I was going 0:08:26.236 --> 0:08:28.716 to wake up and feel totally fine, and then at 0:08:28.756 --> 0:08:31.716 some point shortly after waking up, I would encounter the 0:08:31.796 --> 0:08:35.836 limits of my body and end up back in bed again. 0:08:36.956 --> 0:08:40.116 You ended up seeing various doctors to try to unlock 0:08:40.156 --> 0:08:42.996 this puzzle of what was going on in your body. 0:08:43.476 --> 0:08:46.436 What did doctors tell you at the time. What did 0:08:46.436 --> 0:08:48.076 they say was causing your symptoms? 0:08:48.516 --> 0:08:50.756 At first, they said it was just my body getting 0:08:50.756 --> 0:08:55.516 over having heat exhaustion and electrolyte imbalance. And then when 0:08:55.556 --> 0:08:59.556 it lasted and lasted and lasted, the nausea and the 0:08:59.596 --> 0:09:02.996 dizziness and the fatigue and this sense that my vision 0:09:03.116 --> 0:09:06.196 was leaving, they said that I was just thinking too 0:09:06.236 --> 0:09:08.996 much about my body, and that I was too focused 0:09:09.356 --> 0:09:13.476 on my health, and that it was probably anxiety. And 0:09:14.356 --> 0:09:16.756 you know, it wasn't too long before I started to 0:09:16.796 --> 0:09:19.876 have other symptoms. My skin sort of changed color. I 0:09:19.916 --> 0:09:23.596 started to get yellowish the bones, and my feet started 0:09:23.596 --> 0:09:25.956 to break, like I would just walk around the house 0:09:25.996 --> 0:09:30.156 and my bones would break. I had little hairs growing 0:09:30.196 --> 0:09:32.796 all over my body. I was losing so much weight, 0:09:33.636 --> 0:09:37.076 and so I was watching my body change. And then 0:09:37.116 --> 0:09:40.196 I was told that, no, nothing is happening. You're just 0:09:40.276 --> 0:09:42.516 too worried. You're just thinking too much about it. 0:09:43.196 --> 0:09:46.316 Wow. You know, there are so many parts of your 0:09:46.356 --> 0:09:49.956 story that are so exceptional. This is one that I 0:09:49.996 --> 0:09:54.756 feel is so universal and so relatable to so many people, 0:09:54.996 --> 0:10:00.596 especially women who feel like their concerns about their bodies 0:10:00.676 --> 0:10:04.396 aren't being taken seriously. Yeah, what did it feel like, Jessica? 0:10:04.476 --> 0:10:10.036 To feel your body changing in these ways that no 0:10:10.116 --> 0:10:14.756 one around you could explain that medical professionals were simply dismissing. 0:10:16.636 --> 0:10:20.756 I felt like they were probably right because I had 0:10:20.796 --> 0:10:23.716 such a tendency to blame myself and to demand perfection 0:10:23.876 --> 0:10:28.156 from myself that I assumed that I was somehow doing 0:10:28.476 --> 0:10:34.356 something wrong. And so I made this massive spreadsheet of 0:10:34.396 --> 0:10:38.276 symptom on set date and what had happened right before it, 0:10:38.356 --> 0:10:41.716 and what supplements I had tried, and what new diets 0:10:41.796 --> 0:10:43.636 I had tried. You know, I had cut out gluten 0:10:43.676 --> 0:10:46.396 and then reintroduced you know, I tried everything, and I 0:10:46.476 --> 0:10:49.156 just kind of thought, well, I could figure this out. 0:10:49.396 --> 0:10:54.116 I also just felt terror because I was experiencing something 0:10:54.476 --> 0:10:59.236 very real and being told that it wasn't real. But 0:10:59.356 --> 0:11:02.996 I was living it inside my own body, and so 0:11:03.916 --> 0:11:06.956 there was just no way to reconcile it. And I 0:11:07.036 --> 0:11:11.476 eventually decided that I must be crazy, that I had 0:11:11.596 --> 0:11:15.276 tricked myself into thinking I got sick on that hike 0:11:15.516 --> 0:11:16.636 and I didn't. 0:11:17.196 --> 0:11:18.716 I mean, you talked about the fact that you were 0:11:18.756 --> 0:11:23.236 always so self critical, right, like always doubting yourself. What 0:11:23.276 --> 0:11:26.116 did this do to the trust that you had in 0:11:26.156 --> 0:11:29.996 your ability to even live in your own body and 0:11:30.116 --> 0:11:31.636 understand what was happening to it? 0:11:32.316 --> 0:11:35.796 I mean, it was gone. It was totally gone. It 0:11:35.916 --> 0:11:43.636 was such a foundational breakdown of identity because I had 0:11:43.676 --> 0:11:48.596 all these ways that I had constructed a really shiny life, 0:11:48.636 --> 0:11:50.276 and all of these ways that I thought I was 0:11:50.356 --> 0:11:52.516 about to have a good life or about to be 0:11:52.596 --> 0:11:55.516 good enough, and then those were all vanishing. You know. 0:11:55.636 --> 0:11:58.756 I wasn't able to work anymore. I was living alone, 0:11:59.156 --> 0:12:01.476 my relationship had ended. I was in a one bedroom 0:12:01.516 --> 0:12:05.356 apartment just trying not to die. Like every day it 0:12:05.396 --> 0:12:08.116 was like, how will I get food today? How will 0:12:08.156 --> 0:12:10.676 I get the things I need to do to stay alive. 0:12:11.716 --> 0:12:15.316 I felt like I was constantly running a fever. I 0:12:15.436 --> 0:12:19.356 was very underweight, even though I was always trying to 0:12:19.396 --> 0:12:22.716 eat more, but I was constantly nauseated. I felt like 0:12:22.756 --> 0:12:26.036 I was going to faint almost all day. Every day 0:12:26.076 --> 0:12:28.476 when I did almost anything, my vision would start to 0:12:28.476 --> 0:12:31.236 black out and I would start to lose consciousness. To 0:12:31.316 --> 0:12:33.316 get food. If I went to the grocery store, I 0:12:33.356 --> 0:12:36.756 actually had to scoot just on my butt on the 0:12:36.836 --> 0:12:39.236 floor through the line at the grocery store. I couldn't 0:12:39.276 --> 0:12:41.156 make it through the line. I couldn't get gas in 0:12:41.196 --> 0:12:44.476 my car. I found this guy at a gas station 0:12:44.596 --> 0:12:47.996 five minutes away, and I got his phone number, and 0:12:48.196 --> 0:12:50.516 if I called him, he would put gas in my car. 0:12:50.556 --> 0:12:53.116 You know, my entire day was the series of problem 0:12:53.196 --> 0:12:57.356 solves because of this intense level of dizziness and nausea 0:12:57.396 --> 0:13:00.676 and weakness and pain. I remember I tried to go 0:13:00.716 --> 0:13:02.916 on a walk at that time because everyone said I 0:13:02.996 --> 0:13:05.236 was fine, and then I started to black out and 0:13:05.276 --> 0:13:09.956 I lay down on the grass and I thought, I 0:13:10.036 --> 0:13:12.756 don't know what's going to happen other than that I'm 0:13:12.796 --> 0:13:17.796 going to die because I I don't know how to 0:13:17.836 --> 0:13:20.036 get help. I don't know what's wrong with me. I 0:13:20.076 --> 0:13:22.716 don't know how I'm doing this to myself, Like how 0:13:22.716 --> 0:13:26.636 have I convinced myself that this is happening if it isn't, 0:13:26.676 --> 0:13:29.476 And how do I get out of here? Yeah? 0:13:30.156 --> 0:13:33.116 How long were you in this torture US state, Jessica, 0:13:33.156 --> 0:13:35.916 where you were in limbo and you were being made 0:13:35.996 --> 0:13:39.556 to question your own relationship with reality. 0:13:40.036 --> 0:13:43.636 It was two years, and then it was August of 0:13:43.716 --> 0:13:48.756 twenty thirteen. I went to a psychiatrist and I said, 0:13:49.796 --> 0:13:53.196 I don't know what's wrong. I'm desperate, but I need 0:13:53.316 --> 0:13:57.356 some sort of medication that will fix this. And I 0:13:57.476 --> 0:14:01.276 described what the last couple of years had been like, 0:14:02.156 --> 0:14:05.676 and it's just this act of profound grace that he 0:14:06.116 --> 0:14:12.156 listened really intently, and he noticed that the times I 0:14:12.236 --> 0:14:15.316 felt the worst was when I was standing upright and 0:14:15.396 --> 0:14:20.876 standing still. And he said, I don't think you have 0:14:22.196 --> 0:14:26.756 a psychological condition. I think you have a neurological condition 0:14:26.876 --> 0:14:31.356 with cardiac implications, where your body can't handle being upright, 0:14:31.876 --> 0:14:35.876 and he referred me to a cardiologist for testing. I 0:14:35.916 --> 0:14:40.836 remember I felt really happy, but also really scared that 0:14:40.916 --> 0:14:43.316 someone would tell me that he was wrong, or that 0:14:43.396 --> 0:14:48.116 it wasn't real. I was so disconnected from my own 0:14:48.156 --> 0:14:50.996 experience and from any belief in myself, you know, the 0:14:51.076 --> 0:14:54.836 slightest breath could like blow me away from this new 0:14:54.916 --> 0:14:57.596 sense of hope or this new sense that maybe I 0:14:57.716 --> 0:15:02.796 wasn't completely delusional about my own physical experience. And then 0:15:02.796 --> 0:15:06.396 there was also the logistics. So the doctor he referred 0:15:06.396 --> 0:15:08.796 me to was in Charlotte, which was two hours away, 0:15:09.236 --> 0:15:10.676 and I had to figure out how to get there. 0:15:10.836 --> 0:15:12.836 I couldn't drive, you know. Every time I would try 0:15:12.876 --> 0:15:16.476 to drive, I would start to faint. And so this 0:15:16.876 --> 0:15:21.076 friend from college was passing through town and I asked 0:15:21.116 --> 0:15:24.156 him if I could pay him to take me to 0:15:24.196 --> 0:15:28.596 this cardiologist in Charlotte, and he did. I was earning 0:15:28.636 --> 0:15:31.396 no income and my insurance didn't cover the doctor who 0:15:31.396 --> 0:15:34.076 could do the test. So I remember I called my 0:15:34.196 --> 0:15:36.076 parents and I asked them if they could lend me 0:15:36.116 --> 0:15:40.756 the three thousand dollars for the test, and they did so. 0:15:40.796 --> 0:15:43.196 I was also just still trying to survive. My whole 0:15:43.236 --> 0:15:46.356 life was a logistic puzzle of survival. 0:15:47.796 --> 0:15:52.476 Eventually, you did receive a diagnosis. 0:15:52.516 --> 0:15:56.396 So I had the testing done. But also around that time, 0:15:56.396 --> 0:15:59.196 my younger sister had developed the same symptoms, and so 0:15:59.356 --> 0:16:03.156 I got the diagnosis of pots postur orthostatic doctor cardio syndrome, 0:16:03.156 --> 0:16:07.996 which basically means my heart has trouble pumping enough blood 0:16:08.196 --> 0:16:11.236 and oxygen to my brain if I'm upright, and it 0:16:11.276 --> 0:16:14.556 comes with a bunch of other symptoms. And because she 0:16:14.876 --> 0:16:18.276 developed the same syndrome, they sent us to a geneticist 0:16:18.476 --> 0:16:21.436 where we found out we also had a connective tissue 0:16:21.436 --> 0:16:25.916 disorder called EDS, which leads to POTS in some people. 0:16:27.036 --> 0:16:31.516 And what were the implications of the EDS diagnosis, Like, 0:16:31.596 --> 0:16:34.716 understanding that there was this underlying genetic syndrome. 0:16:35.036 --> 0:16:39.516 It meant that it was very unlikely that we would 0:16:40.316 --> 0:16:45.436 ever not have POTS or ever be healthy again. So 0:16:45.516 --> 0:16:47.596 what had happened was when I went on that hike, 0:16:47.716 --> 0:16:52.436 the heat exhaustion was a physical stressor that activated this 0:16:52.556 --> 0:16:58.076 neurological condition that activated my body's difficulty with controlling heart 0:16:58.156 --> 0:17:01.196 rate and blood pressure and digestion. And I had spent 0:17:01.276 --> 0:17:04.476 so much time thinking about that hike, thinking how would 0:17:04.476 --> 0:17:06.436 my life be different if I didn't go on this 0:17:06.476 --> 0:17:11.636 one hike? But learning that I had this underlying genetic condition, 0:17:11.956 --> 0:17:14.596 I now know that it was just it was ready 0:17:14.636 --> 0:17:16.636 to be turned on. There was going to be some 0:17:16.756 --> 0:17:20.436 physical stressor at some point that was going to activate it. 0:17:20.436 --> 0:17:23.676 It's not all the fault of these wild dogs in Santorini. 0:17:23.676 --> 0:17:25.876 There was going to be something that did it. 0:17:27.196 --> 0:17:30.196 You know, as all of this was unfolding on a 0:17:30.196 --> 0:17:32.996 personal front, when it came to thinking about your self identity, 0:17:33.476 --> 0:17:38.236 you insisted on identifying as someone who was sick versus 0:17:38.356 --> 0:17:41.276 as someone who was disabled. Can you tell me a 0:17:41.276 --> 0:17:43.516 bit more about that choice. 0:17:44.356 --> 0:17:47.676 I didn't even consider that I was disabled. I thought 0:17:47.716 --> 0:17:50.596 I got sick and stayed sick, like I had this 0:17:50.796 --> 0:17:55.276 body that was operating correctly, and then it stopped operating correctly, 0:17:55.716 --> 0:17:59.516 and that's what illness is. I don't even think I 0:17:59.716 --> 0:18:02.836 thought about what being disabled meant. You know, my sister 0:18:02.956 --> 0:18:06.316 that had died when I was younger was disabled. She 0:18:06.436 --> 0:18:09.116 had seizures, and she had some paralysis and hearing life 0:18:09.476 --> 0:18:11.956 and had a you know, sort of profound disability. And 0:18:11.996 --> 0:18:15.756 I never even considered the word for myself, which was 0:18:15.796 --> 0:18:19.996 funny because, well, I think it's mostly internalizedableism. Because I 0:18:20.036 --> 0:18:23.796 had a disabled parking placard, I was at that point 0:18:23.836 --> 0:18:28.636 receiving disability insurance income. I had the word disability kind 0:18:28.676 --> 0:18:31.996 of hovering around me, but I just always thought it 0:18:32.036 --> 0:18:36.476 was like an incidental term or a practical term, and 0:18:36.516 --> 0:18:40.196 not one that actually applied to me or meant anything. 0:18:41.196 --> 0:18:47.996 Tell me then, about transitioning from identifying as someone who 0:18:48.036 --> 0:18:51.436 was sick to someone who is disabled. What led to 0:18:51.476 --> 0:18:52.716 that internal evolution? 0:18:53.916 --> 0:18:58.396 After the diagnosis, I spent a lot of time trying 0:18:58.436 --> 0:19:01.436 to not be sick. Still, even knowing that it was 0:19:01.516 --> 0:19:05.156 unlikely to be successful, I tried anything a doctor said 0:19:05.276 --> 0:19:07.116 because I thought I could beat it. I was still 0:19:07.156 --> 0:19:09.836 a striver, you know, I was still trying to be sick. 0:19:09.996 --> 0:19:13.876 And then I was in graduate school for social work. 0:19:14.116 --> 0:19:17.996 At that point in my life, it was twenty seventeen. 0:19:18.796 --> 0:19:21.036 I had been sick for what I would have said, 0:19:21.036 --> 0:19:24.276 sick for six years, and I had started to craft 0:19:24.316 --> 0:19:26.916 a new life for myself as a sick person. You know. 0:19:26.996 --> 0:19:30.156 I had moved to California, where the temperature was easier 0:19:30.156 --> 0:19:32.996 for me to manage. I made friends, I had started 0:19:33.076 --> 0:19:36.876 dating my now husband, David. I had this full life, 0:19:37.436 --> 0:19:40.876 but I still had this unresolved relationship with my very 0:19:40.996 --> 0:19:45.316 sick body. And I had a semester where I could 0:19:45.396 --> 0:19:48.676 do an independent study, and so I developed my own curriculum, 0:19:49.276 --> 0:19:54.236 and the title of my independent study was Disability and Grief. 0:19:55.036 --> 0:19:57.396 And it's interesting looking back at that, because it's clear 0:19:57.516 --> 0:19:59.196 that there was part of me that was wanting to 0:19:59.236 --> 0:20:01.956 wrestle with disability, because why would I have created this 0:20:02.036 --> 0:20:05.356 independent study and this reading list for myself? But I 0:20:06.796 --> 0:20:10.916 made myself a reading list of ability scholars and disability 0:20:10.916 --> 0:20:14.436 thinkers and memoirists and philosophers, and then I spent a 0:20:14.476 --> 0:20:20.596 semester reading them. And the first book I read was 0:20:20.596 --> 0:20:25.676 a book called Minority Body. And at the beginning of 0:20:25.716 --> 0:20:33.196 the book, doctor Barnes Elizabeth says that disability in itself 0:20:34.316 --> 0:20:38.916 is not necessarily worse than not being disabled, that it's 0:20:39.076 --> 0:20:43.156 the mere difference instead of a bad difference, and that 0:20:43.316 --> 0:20:47.116 being disabled is a way of having a minority body. 0:20:47.316 --> 0:20:49.556 Like there's the majority of the way bodies function, and 0:20:49.556 --> 0:20:52.076 then there's the minority of the way, and disability is 0:20:52.116 --> 0:20:54.836 the minority way, and that is not a value judgment, 0:20:55.756 --> 0:20:59.196 and something about the way my brain works. It's like 0:20:59.436 --> 0:21:06.596 this logic, this philosophy. I was just like, oh, okay, 0:21:06.636 --> 0:21:10.316 becoming sick wasn't when my body or wasn't like it 0:21:10.396 --> 0:21:14.996 worked and stopped working. But my body went from this 0:21:15.076 --> 0:21:18.516 one way of being and now it is this way 0:21:19.716 --> 0:21:23.636 and it's up to me to decide the meaning behind that. 0:21:24.236 --> 0:21:31.876 It isn't an inherent loss. And then what happened after 0:21:31.916 --> 0:21:35.596 I read Elizabeth's book is I read a couple dozen 0:21:35.756 --> 0:21:39.236 other books by disabled authors, and I read poetry and 0:21:39.316 --> 0:21:42.796 memoir I read like Ronda Olkin's instruction on how to 0:21:42.836 --> 0:21:45.556 teach disabled social work. You know, I read this breath 0:21:45.676 --> 0:21:49.516 of work by disabled writers, and while I decided to 0:21:49.556 --> 0:21:53.556 identify as disabled because I wanted to be one of 0:21:53.596 --> 0:21:57.356 these people, like I was reading the most brilliant and 0:21:57.516 --> 0:22:01.556 creative revolutionaries. It felt like there was this group of 0:22:01.636 --> 0:22:06.876 people who were saying the way that you were before 0:22:07.396 --> 0:22:11.356 when you thought that a good enough life was up 0:22:11.356 --> 0:22:14.236 to you, when you thought it was just a matter 0:22:14.356 --> 0:22:19.596 of working harder, that is a message from the world, 0:22:20.636 --> 0:22:24.916 and that disability is a counter argument. It's a way 0:22:24.956 --> 0:22:29.916 of saying everything we believe about what matters, or about 0:22:29.956 --> 0:22:32.356 what we should strive for, or about what we're capable of, 0:22:32.556 --> 0:22:35.236 all of that may be wrong, and let's consider a 0:22:35.276 --> 0:22:38.796 different perspective. And I just thought, like, I want to 0:22:38.836 --> 0:22:41.756 be one of you. And so it felt like an honor. 0:22:42.036 --> 0:22:45.556 It felt like I had transitioned into a disabled body 0:22:45.596 --> 0:22:49.836 without realizing it, and that by acknowledging that identity, I 0:22:49.916 --> 0:22:54.916 got to be part of the greatest group of people 0:22:54.956 --> 0:22:56.156 I had ever been introduced to. 0:22:56.956 --> 0:23:00.316 Wow, you're right about the fact that this was the 0:23:00.356 --> 0:23:04.116 first time that you considered the idea that quote. If 0:23:04.236 --> 0:23:07.236 like it's harder for a disabled person, we should consider 0:23:07.316 --> 0:23:10.196 the possibility that it's not our body or minds that 0:23:10.236 --> 0:23:13.076 are to blame, but the social structures that we navigate 0:23:13.156 --> 0:23:17.956 with those bodies and minds. And one insight that was 0:23:17.956 --> 0:23:22.556 so thought provoking is those who are not disabled don't 0:23:22.596 --> 0:23:26.316 get to define the disabled experience through their vantage points. 0:23:26.316 --> 0:23:31.516 Since goodness and wellness and worthiness is all just a 0:23:31.556 --> 0:23:33.836 state of mind for any given person. 0:23:33.796 --> 0:23:37.436 That's exactly it. I get to decide what my life 0:23:39.356 --> 0:23:44.556 means now, and if you're sorry for me like that pity. 0:23:44.876 --> 0:23:48.596 I really think pity is like just bumping right up 0:23:48.596 --> 0:23:52.916 against disdain. I think pity is so dangerous. It's not empathy. 0:23:53.196 --> 0:23:55.556 There's such a difference, and I think we need to 0:23:55.556 --> 0:23:59.396 be so careful about pitying another person's life based on 0:23:59.436 --> 0:24:02.356 our own assumptions of what it would be like. And 0:24:02.436 --> 0:24:05.756 I could decide I like my life less now like 0:24:05.796 --> 0:24:08.196 I get to decide it. It doesn't mean every disabled 0:24:08.236 --> 0:24:10.556 person has to be happy with their identity, but it 0:24:10.636 --> 0:24:13.316 is up to the disabled person to decide. It is 0:24:13.396 --> 0:24:16.196 not up to another person to say it is worse 0:24:16.276 --> 0:24:21.996 to be disabled. And I'm so careful about this because 0:24:22.036 --> 0:24:24.276 it's not a pressure for other people to feel this way. 0:24:24.316 --> 0:24:27.476 And it's not overly trite, and it's not silver lining anything, 0:24:27.556 --> 0:24:31.836 but I deeply mean that I would choose this version 0:24:31.876 --> 0:24:35.636 of my life. That I like my life as a 0:24:35.676 --> 0:24:40.476 disabled person far more than I liked my life before. 0:24:44.996 --> 0:24:47.236 We'll be back in a moment with a slight change 0:24:47.236 --> 0:25:13.316 of plans. As Jessica began to embrace her disability, she 0:25:13.396 --> 0:25:18.276 no longer saw herself as someone who might one day recover. Instead, 0:25:18.596 --> 0:25:22.036 she saw herself as someone whose body had changed and 0:25:22.076 --> 0:25:25.716 who was now a member of a vibrant, powerful community. 0:25:26.596 --> 0:25:30.476 And as Jessica began reimagining her life, she also began 0:25:30.596 --> 0:25:34.756 to reconsider her thoughts on motherhood. She reflects on this 0:25:34.876 --> 0:25:39.116 shift in her new book Unfit Parent, A Disabled Mother 0:25:39.356 --> 0:25:41.476 Challenges and Inaccessible World. 0:25:42.636 --> 0:25:45.956