1 00:00:14,956 --> 00:00:15,436 Speaker 1: Pushkin. 2 00:00:30,276 --> 00:00:34,796 Speaker 2: The way I treated myself inside was like goodness was 3 00:00:34,996 --> 00:00:38,036 Speaker 2: just around the corner. If I could make a few 4 00:00:38,076 --> 00:00:40,596 Speaker 2: more right decisions, or work a little bit harder, or 5 00:00:40,596 --> 00:00:43,476 Speaker 2: do things a little bit better, then my life would 6 00:00:43,516 --> 00:00:45,836 Speaker 2: be good or I would be good like I didn't 7 00:00:45,836 --> 00:00:47,476 Speaker 2: think I need to like myself for who I am. 8 00:00:47,516 --> 00:00:50,156 Speaker 2: I thought I will eventually earn the reward of my 9 00:00:50,276 --> 00:00:51,156 Speaker 2: own respect. 10 00:00:52,116 --> 00:00:55,916 Speaker 1: Jessica Slice spent years waiting for that elusive day when 11 00:00:55,956 --> 00:00:57,836 Speaker 1: she might actually like herself. 12 00:00:58,436 --> 00:01:01,956 Speaker 2: For all those years, I thought that it was in 13 00:01:02,036 --> 00:01:05,996 Speaker 2: my control to be perfect, or to form a perfect life, 14 00:01:06,076 --> 00:01:09,636 Speaker 2: or to be good enough. And that is a message 15 00:01:09,676 --> 00:01:15,396 Speaker 2: from the world, and disability is a counter argument. It's 16 00:01:15,436 --> 00:01:19,876 Speaker 2: a way of saying everything we believe about what matters, 17 00:01:20,076 --> 00:01:21,996 Speaker 2: or about what we should strive for, or about what 18 00:01:22,036 --> 00:01:24,996 Speaker 2: we're capable of, like all of that may be wrong. 19 00:01:27,796 --> 00:01:31,916 Speaker 1: On today's show, when we let go of society standards 20 00:01:31,916 --> 00:01:37,836 Speaker 1: of goodness, who can we become? I'm maya Schunker, a 21 00:01:37,876 --> 00:01:41,716 Speaker 1: scientist who studies human behavior. And this is a slight 22 00:01:41,796 --> 00:01:44,676 Speaker 1: change of plans, a show about who we are and 23 00:01:44,716 --> 00:01:51,156 Speaker 1: who we become in the face of a big change. 24 00:01:55,556 --> 00:01:59,236 Speaker 1: Jessica Slice is an author who writes about living with disability. 25 00:01:59,716 --> 00:02:02,396 Speaker 1: She's written multiple books and has been published in The 26 00:02:02,436 --> 00:02:06,396 Speaker 1: New York Times, The Washington Post, The Atlantic, and The Guardian. 27 00:02:07,596 --> 00:02:10,596 Speaker 1: Jessica and I began our conversation by talking about what 28 00:02:10,676 --> 00:02:14,476 Speaker 1: she was like in her early twenties before she became disabled. 29 00:02:15,516 --> 00:02:20,756 Speaker 2: I was a very high achiever. I was relentless in 30 00:02:20,796 --> 00:02:25,516 Speaker 2: my striving. I started practicing real estate at twenty five 31 00:02:25,876 --> 00:02:29,436 Speaker 2: and dove into that so thoroughly that within a year 32 00:02:29,476 --> 00:02:32,036 Speaker 2: I had started a company with some other women. I 33 00:02:32,116 --> 00:02:35,636 Speaker 2: was named one of the best realtors in the United States. 34 00:02:35,836 --> 00:02:39,796 Speaker 2: Oh my god, Okay, yeah, it's so bizarre. And I 35 00:02:39,836 --> 00:02:43,356 Speaker 2: was married to a high school sweetheart, I owned a company, 36 00:02:43,516 --> 00:02:46,156 Speaker 2: was earning more money than anyone should in their twenties. 37 00:02:46,996 --> 00:02:51,556 Speaker 2: But the thing that was really true about that time 38 00:02:51,916 --> 00:02:55,356 Speaker 2: is that I was so hard on myself. Like the 39 00:02:55,396 --> 00:03:00,036 Speaker 2: way I treated myself inside was like goodness was just 40 00:03:00,876 --> 00:03:03,196 Speaker 2: around the corner. If I could make a few more 41 00:03:03,276 --> 00:03:05,676 Speaker 2: right decisions, or work a little bit harder, or do 42 00:03:05,756 --> 00:03:08,836 Speaker 2: things a little bit better, then my life would be good, 43 00:03:08,956 --> 00:03:13,476 Speaker 2: or I would be good. And because that's not possible, 44 00:03:13,556 --> 00:03:19,236 Speaker 2: because we can't actually will power ourselves into goodness, It 45 00:03:19,276 --> 00:03:22,476 Speaker 2: made me just sort of hate myself, and I had 46 00:03:22,476 --> 00:03:28,476 Speaker 2: this corrosive shame. I couldn't have identified it as shame, 47 00:03:29,796 --> 00:03:32,436 Speaker 2: but I had this suspicion that I was so bad, 48 00:03:33,556 --> 00:03:36,276 Speaker 2: and then the thing I was doing was trying so 49 00:03:36,276 --> 00:03:39,996 Speaker 2: so hard to be good and to have a good life. 50 00:03:40,956 --> 00:03:45,556 Speaker 1: Was that just a natural proclivity, natural disposition, or do 51 00:03:45,596 --> 00:03:48,756 Speaker 1: you think there was something in the way that you 52 00:03:48,836 --> 00:03:51,756 Speaker 1: grew up or some experience you had that gave rise 53 00:03:51,876 --> 00:03:56,116 Speaker 1: to this concern that you were bad in some way. 54 00:03:57,276 --> 00:04:00,196 Speaker 2: I experienced a lot of loss in my childhood. I 55 00:04:00,236 --> 00:04:04,436 Speaker 2: had a sister die, I had friends die. I had 56 00:04:04,436 --> 00:04:06,436 Speaker 2: a kid in my second grade class die, and then 57 00:04:06,516 --> 00:04:09,756 Speaker 2: one in my fourth grade class, an uncle and a 58 00:04:09,756 --> 00:04:13,116 Speaker 2: grandfather and a cousin all within a few years. I 59 00:04:13,156 --> 00:04:16,236 Speaker 2: went to so many funerals before I was even a preteen, 60 00:04:16,676 --> 00:04:21,876 Speaker 2: including that of my younger sister, and I think I 61 00:04:21,916 --> 00:04:24,596 Speaker 2: had to come up with an explanation. And so it 62 00:04:24,636 --> 00:04:27,756 Speaker 2: was like, these are bad things happening that must somehow 63 00:04:27,796 --> 00:04:30,436 Speaker 2: be my fault, because little kid logic is always it 64 00:04:30,516 --> 00:04:34,116 Speaker 2: must somehow be my fault, and so the only thing 65 00:04:34,156 --> 00:04:37,076 Speaker 2: to do is to be better, to be a good kid, 66 00:04:37,076 --> 00:04:40,796 Speaker 2: to be good, and so then I was just completely 67 00:04:40,836 --> 00:04:44,436 Speaker 2: devoted to being good and that kind of propelled me through. 68 00:04:44,796 --> 00:04:47,756 Speaker 2: You know, I was still just being good in my twenties. 69 00:04:48,756 --> 00:04:54,436 Speaker 2: But the thing I did think very concretely was I'm 70 00:04:54,476 --> 00:04:58,876 Speaker 2: going to figure this out. Like I'm still dissatisfied. I'm 71 00:04:58,916 --> 00:05:03,556 Speaker 2: still not there. I still have this emptiness, but it 72 00:05:03,596 --> 00:05:06,316 Speaker 2: was like there was always this thought that there was 73 00:05:06,396 --> 00:05:10,636 Speaker 2: a way to get there and. 74 00:05:10,636 --> 00:05:14,156 Speaker 1: This elusive feeling of goodness. How would you have defined 75 00:05:14,196 --> 00:05:16,676 Speaker 1: it at the time, and what would it have felt 76 00:05:16,716 --> 00:05:18,476 Speaker 1: like to feel good? 77 00:05:19,596 --> 00:05:23,156 Speaker 2: I think I would have liked myself. I would have said, 78 00:05:23,836 --> 00:05:26,556 Speaker 2: when I'm a better improved person, I like myself. Like 79 00:05:26,596 --> 00:05:28,316 Speaker 2: I didn't think I need to like myself for who 80 00:05:28,356 --> 00:05:31,436 Speaker 2: I am. I thought I will eventually earn the reward 81 00:05:31,516 --> 00:05:32,756 Speaker 2: of my own respect. 82 00:05:35,196 --> 00:05:38,676 Speaker 1: Let's fast forward to twenty eleven. You were in your 83 00:05:38,756 --> 00:05:41,556 Speaker 1: late twenties and you and your husband at the time 84 00:05:41,876 --> 00:05:45,956 Speaker 1: bought tickets to go on this epic cruise. Tell me 85 00:05:45,996 --> 00:05:49,356 Speaker 1: about that trip and what your mindset was like going 86 00:05:49,396 --> 00:05:49,836 Speaker 1: into it. 87 00:05:50,756 --> 00:05:53,996 Speaker 2: Gosh, we built this trip up so much. It was 88 00:05:54,076 --> 00:05:57,676 Speaker 2: this luxury cruise ship that was going to Turkey and 89 00:05:57,756 --> 00:06:01,396 Speaker 2: Greece and Italy. We planned this for a whole year, 90 00:06:01,596 --> 00:06:04,076 Speaker 2: like every moment of it was going to be perfect, 91 00:06:04,396 --> 00:06:07,356 Speaker 2: and it's the perfect encapsulation of how I was living then, 92 00:06:07,436 --> 00:06:11,356 Speaker 2: which is there there will be a time where life 93 00:06:11,436 --> 00:06:13,516 Speaker 2: is finally what I thought it could be or what 94 00:06:13,596 --> 00:06:16,156 Speaker 2: I could be. And this trip kind of held all 95 00:06:16,236 --> 00:06:19,636 Speaker 2: this expectation in it. I mean I thought of what 96 00:06:19,676 --> 00:06:22,876 Speaker 2: I was going to wear every day exactly, and which 97 00:06:22,996 --> 00:06:25,556 Speaker 2: restaurants we would go to and which cities and what 98 00:06:25,676 --> 00:06:28,356 Speaker 2: hikes we would take. It was like nothing has been 99 00:06:28,436 --> 00:06:30,756 Speaker 2: planned more than that trip was. 100 00:06:31,556 --> 00:06:34,756 Speaker 1: And so on the tenth day of your trip, you 101 00:06:34,796 --> 00:06:37,716 Speaker 1: were out on a long hike and you started to 102 00:06:38,076 --> 00:06:42,036 Speaker 1: experience some unusual symptoms. So what happened? 103 00:06:43,036 --> 00:06:45,476 Speaker 2: So we were about a mile from the end, and 104 00:06:45,556 --> 00:06:50,516 Speaker 2: I realized that we didn't have enough water, and I thought, Okay, well, 105 00:06:50,516 --> 00:06:52,556 Speaker 2: this is too bad. I'm going to really need to 106 00:06:52,556 --> 00:06:55,836 Speaker 2: rehydrate when we get to the village. But it felt 107 00:06:55,836 --> 00:06:59,676 Speaker 2: like it would be a minor hiccup. But then we 108 00:07:00,236 --> 00:07:02,916 Speaker 2: which it sounds very Greek mythy, but we encountered a 109 00:07:02,956 --> 00:07:08,276 Speaker 2: pack of wild dogs blocking the path and they were 110 00:07:08,516 --> 00:07:12,516 Speaker 2: like bare their teeth, and we had to add all 111 00:07:12,556 --> 00:07:16,756 Speaker 2: this distance onto the hike to get around this pack 112 00:07:16,796 --> 00:07:20,076 Speaker 2: of dogs, and adding that distance onto the hike meant 113 00:07:20,476 --> 00:07:22,396 Speaker 2: that by the time we got to the village where 114 00:07:22,636 --> 00:07:26,236 Speaker 2: I was going to get some food and water and recover, 115 00:07:26,476 --> 00:07:29,916 Speaker 2: I was vomiting and felt really confused. I felt really 116 00:07:29,956 --> 00:07:33,036 Speaker 2: out of it. I had this sense that I was 117 00:07:33,076 --> 00:07:35,716 Speaker 2: sort of separate from the world. And then I just 118 00:07:35,796 --> 00:07:39,156 Speaker 2: rested and I thought, Okay, well, i'll rest today, I'll 119 00:07:39,156 --> 00:07:42,236 Speaker 2: be back tomorrow. And then I woke up the next 120 00:07:42,316 --> 00:07:47,036 Speaker 2: day and it was like I had traded my body 121 00:07:47,116 --> 00:07:49,836 Speaker 2: for a different body. I tried to get down the 122 00:07:49,876 --> 00:07:53,156 Speaker 2: hall to the bathroom and could barely walk. The room 123 00:07:53,276 --> 00:07:56,996 Speaker 2: was like spinning and like it was black around the 124 00:07:56,996 --> 00:08:02,396 Speaker 2: outside of my vision. I just felt I felt so weak, 125 00:08:03,276 --> 00:08:06,276 Speaker 2: and then I woke up every day for the rest 126 00:08:06,276 --> 00:08:08,876 Speaker 2: of the trip almost entirely bedbound. I would try to 127 00:08:08,916 --> 00:08:10,756 Speaker 2: do something and then just have to go right back 128 00:08:10,756 --> 00:08:16,676 Speaker 2: to bed. Made at home, went to a doctor. All 129 00:08:16,756 --> 00:08:20,716 Speaker 2: my blood tests were normal, and I felt no better, 130 00:08:21,556 --> 00:08:26,236 Speaker 2: and I kept thinking every morning that I was going 131 00:08:26,236 --> 00:08:28,716 Speaker 2: to wake up and feel totally fine, and then at 132 00:08:28,756 --> 00:08:31,716 Speaker 2: some point shortly after waking up, I would encounter the 133 00:08:31,796 --> 00:08:35,836 Speaker 2: limits of my body and end up back in bed again. 134 00:08:36,956 --> 00:08:40,116 Speaker 1: You ended up seeing various doctors to try to unlock 135 00:08:40,156 --> 00:08:42,996 Speaker 1: this puzzle of what was going on in your body. 136 00:08:43,476 --> 00:08:46,436 Speaker 1: What did doctors tell you at the time. What did 137 00:08:46,436 --> 00:08:48,076 Speaker 1: they say was causing your symptoms? 138 00:08:48,516 --> 00:08:50,756 Speaker 2: At first, they said it was just my body getting 139 00:08:50,756 --> 00:08:55,516 Speaker 2: over having heat exhaustion and electrolyte imbalance. And then when 140 00:08:55,556 --> 00:08:59,556 Speaker 2: it lasted and lasted and lasted, the nausea and the 141 00:08:59,596 --> 00:09:02,996 Speaker 2: dizziness and the fatigue and this sense that my vision 142 00:09:03,116 --> 00:09:06,196 Speaker 2: was leaving, they said that I was just thinking too 143 00:09:06,236 --> 00:09:08,996 Speaker 2: much about my body, and that I was too focused 144 00:09:09,356 --> 00:09:13,476 Speaker 2: on my health, and that it was probably anxiety. And 145 00:09:14,356 --> 00:09:16,756 Speaker 2: you know, it wasn't too long before I started to 146 00:09:16,796 --> 00:09:19,876 Speaker 2: have other symptoms. My skin sort of changed color. I 147 00:09:19,916 --> 00:09:23,596 Speaker 2: started to get yellowish the bones, and my feet started 148 00:09:23,596 --> 00:09:25,956 Speaker 2: to break, like I would just walk around the house 149 00:09:25,996 --> 00:09:30,156 Speaker 2: and my bones would break. I had little hairs growing 150 00:09:30,196 --> 00:09:32,796 Speaker 2: all over my body. I was losing so much weight, 151 00:09:33,636 --> 00:09:37,076 Speaker 2: and so I was watching my body change. And then 152 00:09:37,116 --> 00:09:40,196 Speaker 2: I was told that, no, nothing is happening. You're just 153 00:09:40,276 --> 00:09:42,516 Speaker 2: too worried. You're just thinking too much about it. 154 00:09:43,196 --> 00:09:46,316 Speaker 1: Wow. You know, there are so many parts of your 155 00:09:46,356 --> 00:09:49,956 Speaker 1: story that are so exceptional. This is one that I 156 00:09:49,996 --> 00:09:54,756 Speaker 1: feel is so universal and so relatable to so many people, 157 00:09:54,996 --> 00:10:00,596 Speaker 1: especially women who feel like their concerns about their bodies 158 00:10:00,676 --> 00:10:04,396 Speaker 1: aren't being taken seriously. Yeah, what did it feel like, Jessica? 159 00:10:04,476 --> 00:10:10,036 Speaker 1: To feel your body changing in these ways that no 160 00:10:10,116 --> 00:10:14,756 Speaker 1: one around you could explain that medical professionals were simply dismissing. 161 00:10:16,636 --> 00:10:20,756 Speaker 2: I felt like they were probably right because I had 162 00:10:20,796 --> 00:10:23,716 Speaker 2: such a tendency to blame myself and to demand perfection 163 00:10:23,876 --> 00:10:28,156 Speaker 2: from myself that I assumed that I was somehow doing 164 00:10:28,476 --> 00:10:34,356 Speaker 2: something wrong. And so I made this massive spreadsheet of 165 00:10:34,396 --> 00:10:38,276 Speaker 2: symptom on set date and what had happened right before it, 166 00:10:38,356 --> 00:10:41,716 Speaker 2: and what supplements I had tried, and what new diets 167 00:10:41,796 --> 00:10:43,636 Speaker 2: I had tried. You know, I had cut out gluten 168 00:10:43,676 --> 00:10:46,396 Speaker 2: and then reintroduced you know, I tried everything, and I 169 00:10:46,476 --> 00:10:49,156 Speaker 2: just kind of thought, well, I could figure this out. 170 00:10:49,396 --> 00:10:54,116 Speaker 2: I also just felt terror because I was experiencing something 171 00:10:54,476 --> 00:10:59,236 Speaker 2: very real and being told that it wasn't real. But 172 00:10:59,356 --> 00:11:02,996 Speaker 2: I was living it inside my own body, and so 173 00:11:03,916 --> 00:11:06,956 Speaker 2: there was just no way to reconcile it. And I 174 00:11:07,036 --> 00:11:11,476 Speaker 2: eventually decided that I must be crazy, that I had 175 00:11:11,596 --> 00:11:15,276 Speaker 2: tricked myself into thinking I got sick on that hike 176 00:11:15,516 --> 00:11:16,636 Speaker 2: and I didn't. 177 00:11:17,196 --> 00:11:18,716 Speaker 1: I mean, you talked about the fact that you were 178 00:11:18,756 --> 00:11:23,236 Speaker 1: always so self critical, right, like always doubting yourself. What 179 00:11:23,276 --> 00:11:26,116 Speaker 1: did this do to the trust that you had in 180 00:11:26,156 --> 00:11:29,996 Speaker 1: your ability to even live in your own body and 181 00:11:30,116 --> 00:11:31,636 Speaker 1: understand what was happening to it? 182 00:11:32,316 --> 00:11:35,796 Speaker 2: I mean, it was gone. It was totally gone. It 183 00:11:35,916 --> 00:11:43,636 Speaker 2: was such a foundational breakdown of identity because I had 184 00:11:43,676 --> 00:11:48,596 Speaker 2: all these ways that I had constructed a really shiny life, 185 00:11:48,636 --> 00:11:50,276 Speaker 2: and all of these ways that I thought I was 186 00:11:50,356 --> 00:11:52,516 Speaker 2: about to have a good life or about to be 187 00:11:52,596 --> 00:11:55,516 Speaker 2: good enough, and then those were all vanishing. You know. 188 00:11:55,636 --> 00:11:58,756 Speaker 2: I wasn't able to work anymore. I was living alone, 189 00:11:59,156 --> 00:12:01,476 Speaker 2: my relationship had ended. I was in a one bedroom 190 00:12:01,516 --> 00:12:05,356 Speaker 2: apartment just trying not to die. Like every day it 191 00:12:05,396 --> 00:12:08,116 Speaker 2: was like, how will I get food today? How will 192 00:12:08,156 --> 00:12:10,676 Speaker 2: I get the things I need to do to stay alive. 193 00:12:11,716 --> 00:12:15,316 Speaker 2: I felt like I was constantly running a fever. I 194 00:12:15,436 --> 00:12:19,356 Speaker 2: was very underweight, even though I was always trying to 195 00:12:19,396 --> 00:12:22,716 Speaker 2: eat more, but I was constantly nauseated. I felt like 196 00:12:22,756 --> 00:12:26,036 Speaker 2: I was going to faint almost all day. Every day 197 00:12:26,076 --> 00:12:28,476 Speaker 2: when I did almost anything, my vision would start to 198 00:12:28,476 --> 00:12:31,236 Speaker 2: black out and I would start to lose consciousness. To 199 00:12:31,316 --> 00:12:33,316 Speaker 2: get food. If I went to the grocery store, I 200 00:12:33,356 --> 00:12:36,756 Speaker 2: actually had to scoot just on my butt on the 201 00:12:36,836 --> 00:12:39,236 Speaker 2: floor through the line at the grocery store. I couldn't 202 00:12:39,276 --> 00:12:41,156 Speaker 2: make it through the line. I couldn't get gas in 203 00:12:41,196 --> 00:12:44,476 Speaker 2: my car. I found this guy at a gas station 204 00:12:44,596 --> 00:12:47,996 Speaker 2: five minutes away, and I got his phone number, and 205 00:12:48,196 --> 00:12:50,516 Speaker 2: if I called him, he would put gas in my car. 206 00:12:50,556 --> 00:12:53,116 Speaker 2: You know, my entire day was the series of problem 207 00:12:53,196 --> 00:12:57,356 Speaker 2: solves because of this intense level of dizziness and nausea 208 00:12:57,396 --> 00:13:00,676 Speaker 2: and weakness and pain. I remember I tried to go 209 00:13:00,716 --> 00:13:02,916 Speaker 2: on a walk at that time because everyone said I 210 00:13:02,996 --> 00:13:05,236 Speaker 2: was fine, and then I started to black out and 211 00:13:05,276 --> 00:13:09,956 Speaker 2: I lay down on the grass and I thought, I 212 00:13:10,036 --> 00:13:12,756 Speaker 2: don't know what's going to happen other than that I'm 213 00:13:12,796 --> 00:13:17,796 Speaker 2: going to die because I I don't know how to 214 00:13:17,836 --> 00:13:20,036 Speaker 2: get help. I don't know what's wrong with me. I 215 00:13:20,076 --> 00:13:22,716 Speaker 2: don't know how I'm doing this to myself, Like how 216 00:13:22,716 --> 00:13:26,636 Speaker 2: have I convinced myself that this is happening if it isn't, 217 00:13:26,676 --> 00:13:29,476 Speaker 2: And how do I get out of here? Yeah? 218 00:13:30,156 --> 00:13:33,116 Speaker 1: How long were you in this torture US state, Jessica, 219 00:13:33,156 --> 00:13:35,916 Speaker 1: where you were in limbo and you were being made 220 00:13:35,996 --> 00:13:39,556 Speaker 1: to question your own relationship with reality. 221 00:13:40,036 --> 00:13:43,636 Speaker 2: It was two years, and then it was August of 222 00:13:43,716 --> 00:13:48,756 Speaker 2: twenty thirteen. I went to a psychiatrist and I said, 223 00:13:49,796 --> 00:13:53,196 Speaker 2: I don't know what's wrong. I'm desperate, but I need 224 00:13:53,316 --> 00:13:57,356 Speaker 2: some sort of medication that will fix this. And I 225 00:13:57,476 --> 00:14:01,276 Speaker 2: described what the last couple of years had been like, 226 00:14:02,156 --> 00:14:05,676 Speaker 2: and it's just this act of profound grace that he 227 00:14:06,116 --> 00:14:12,156 Speaker 2: listened really intently, and he noticed that the times I 228 00:14:12,236 --> 00:14:15,316 Speaker 2: felt the worst was when I was standing upright and 229 00:14:15,396 --> 00:14:20,876 Speaker 2: standing still. And he said, I don't think you have 230 00:14:22,196 --> 00:14:26,756 Speaker 2: a psychological condition. I think you have a neurological condition 231 00:14:26,876 --> 00:14:31,356 Speaker 2: with cardiac implications, where your body can't handle being upright, 232 00:14:31,876 --> 00:14:35,876 Speaker 2: and he referred me to a cardiologist for testing. I 233 00:14:35,916 --> 00:14:40,836 Speaker 2: remember I felt really happy, but also really scared that 234 00:14:40,916 --> 00:14:43,316 Speaker 2: someone would tell me that he was wrong, or that 235 00:14:43,396 --> 00:14:48,116 Speaker 2: it wasn't real. I was so disconnected from my own 236 00:14:48,156 --> 00:14:50,996 Speaker 2: experience and from any belief in myself, you know, the 237 00:14:51,076 --> 00:14:54,836 Speaker 2: slightest breath could like blow me away from this new 238 00:14:54,916 --> 00:14:57,596 Speaker 2: sense of hope or this new sense that maybe I 239 00:14:57,716 --> 00:15:02,796 Speaker 2: wasn't completely delusional about my own physical experience. And then 240 00:15:02,796 --> 00:15:06,396 Speaker 2: there was also the logistics. So the doctor he referred 241 00:15:06,396 --> 00:15:08,796 Speaker 2: me to was in Charlotte, which was two hours away, 242 00:15:09,236 --> 00:15:10,676 Speaker 2: and I had to figure out how to get there. 243 00:15:10,836 --> 00:15:12,836 Speaker 2: I couldn't drive, you know. Every time I would try 244 00:15:12,876 --> 00:15:16,476 Speaker 2: to drive, I would start to faint. And so this 245 00:15:16,876 --> 00:15:21,076 Speaker 2: friend from college was passing through town and I asked 246 00:15:21,116 --> 00:15:24,156 Speaker 2: him if I could pay him to take me to 247 00:15:24,196 --> 00:15:28,596 Speaker 2: this cardiologist in Charlotte, and he did. I was earning 248 00:15:28,636 --> 00:15:31,396 Speaker 2: no income and my insurance didn't cover the doctor who 249 00:15:31,396 --> 00:15:34,076 Speaker 2: could do the test. So I remember I called my 250 00:15:34,196 --> 00:15:36,076 Speaker 2: parents and I asked them if they could lend me 251 00:15:36,116 --> 00:15:40,756 Speaker 2: the three thousand dollars for the test, and they did so. 252 00:15:40,796 --> 00:15:43,196 Speaker 2: I was also just still trying to survive. My whole 253 00:15:43,236 --> 00:15:46,356 Speaker 2: life was a logistic puzzle of survival. 254 00:15:47,796 --> 00:15:52,476 Speaker 1: Eventually, you did receive a diagnosis. 255 00:15:52,516 --> 00:15:56,396 Speaker 2: So I had the testing done. But also around that time, 256 00:15:56,396 --> 00:15:59,196 Speaker 2: my younger sister had developed the same symptoms, and so 257 00:15:59,356 --> 00:16:03,156 Speaker 2: I got the diagnosis of pots postur orthostatic doctor cardio syndrome, 258 00:16:03,156 --> 00:16:07,996 Speaker 2: which basically means my heart has trouble pumping enough blood 259 00:16:08,196 --> 00:16:11,236 Speaker 2: and oxygen to my brain if I'm upright, and it 260 00:16:11,276 --> 00:16:14,556 Speaker 2: comes with a bunch of other symptoms. And because she 261 00:16:14,876 --> 00:16:18,276 Speaker 2: developed the same syndrome, they sent us to a geneticist 262 00:16:18,476 --> 00:16:21,436 Speaker 2: where we found out we also had a connective tissue 263 00:16:21,436 --> 00:16:25,916 Speaker 2: disorder called EDS, which leads to POTS in some people. 264 00:16:27,036 --> 00:16:31,516 Speaker 1: And what were the implications of the EDS diagnosis, Like, 265 00:16:31,596 --> 00:16:34,716 Speaker 1: understanding that there was this underlying genetic syndrome. 266 00:16:35,036 --> 00:16:39,516 Speaker 2: It meant that it was very unlikely that we would 267 00:16:40,316 --> 00:16:45,436 Speaker 2: ever not have POTS or ever be healthy again. So 268 00:16:45,516 --> 00:16:47,596 Speaker 2: what had happened was when I went on that hike, 269 00:16:47,716 --> 00:16:52,436 Speaker 2: the heat exhaustion was a physical stressor that activated this 270 00:16:52,556 --> 00:16:58,076 Speaker 2: neurological condition that activated my body's difficulty with controlling heart 271 00:16:58,156 --> 00:17:01,196 Speaker 2: rate and blood pressure and digestion. And I had spent 272 00:17:01,276 --> 00:17:04,476 Speaker 2: so much time thinking about that hike, thinking how would 273 00:17:04,476 --> 00:17:06,436 Speaker 2: my life be different if I didn't go on this 274 00:17:06,476 --> 00:17:11,636 Speaker 2: one hike? But learning that I had this underlying genetic condition, 275 00:17:11,956 --> 00:17:14,596 Speaker 2: I now know that it was just it was ready 276 00:17:14,636 --> 00:17:16,636 Speaker 2: to be turned on. There was going to be some 277 00:17:16,756 --> 00:17:20,436 Speaker 2: physical stressor at some point that was going to activate it. 278 00:17:20,436 --> 00:17:23,676 Speaker 2: It's not all the fault of these wild dogs in Santorini. 279 00:17:23,676 --> 00:17:25,876 Speaker 2: There was going to be something that did it. 280 00:17:27,196 --> 00:17:30,196 Speaker 1: You know, as all of this was unfolding on a 281 00:17:30,196 --> 00:17:32,996 Speaker 1: personal front, when it came to thinking about your self identity, 282 00:17:33,476 --> 00:17:38,236 Speaker 1: you insisted on identifying as someone who was sick versus 283 00:17:38,356 --> 00:17:41,276 Speaker 1: as someone who was disabled. Can you tell me a 284 00:17:41,276 --> 00:17:43,516 Speaker 1: bit more about that choice. 285 00:17:44,356 --> 00:17:47,676 Speaker 2: I didn't even consider that I was disabled. I thought 286 00:17:47,716 --> 00:17:50,596 Speaker 2: I got sick and stayed sick, like I had this 287 00:17:50,796 --> 00:17:55,276 Speaker 2: body that was operating correctly, and then it stopped operating correctly, 288 00:17:55,716 --> 00:17:59,516 Speaker 2: and that's what illness is. I don't even think I 289 00:17:59,716 --> 00:18:02,836 Speaker 2: thought about what being disabled meant. You know, my sister 290 00:18:02,956 --> 00:18:06,316 Speaker 2: that had died when I was younger was disabled. She 291 00:18:06,436 --> 00:18:09,116 Speaker 2: had seizures, and she had some paralysis and hearing life 292 00:18:09,476 --> 00:18:11,956 Speaker 2: and had a you know, sort of profound disability. And 293 00:18:11,996 --> 00:18:15,756 Speaker 2: I never even considered the word for myself, which was 294 00:18:15,796 --> 00:18:19,996 Speaker 2: funny because, well, I think it's mostly internalizedableism. Because I 295 00:18:20,036 --> 00:18:23,796 Speaker 2: had a disabled parking placard, I was at that point 296 00:18:23,836 --> 00:18:28,636 Speaker 2: receiving disability insurance income. I had the word disability kind 297 00:18:28,676 --> 00:18:31,996 Speaker 2: of hovering around me, but I just always thought it 298 00:18:32,036 --> 00:18:36,476 Speaker 2: was like an incidental term or a practical term, and 299 00:18:36,516 --> 00:18:40,196 Speaker 2: not one that actually applied to me or meant anything. 300 00:18:41,196 --> 00:18:47,996 Speaker 1: Tell me then, about transitioning from identifying as someone who 301 00:18:48,036 --> 00:18:51,436 Speaker 1: was sick to someone who is disabled. What led to 302 00:18:51,476 --> 00:18:52,716 Speaker 1: that internal evolution? 303 00:18:53,916 --> 00:18:58,396 Speaker 2: After the diagnosis, I spent a lot of time trying 304 00:18:58,436 --> 00:19:01,436 Speaker 2: to not be sick. Still, even knowing that it was 305 00:19:01,516 --> 00:19:05,156 Speaker 2: unlikely to be successful, I tried anything a doctor said 306 00:19:05,276 --> 00:19:07,116 Speaker 2: because I thought I could beat it. I was still 307 00:19:07,156 --> 00:19:09,836 Speaker 2: a striver, you know, I was still trying to be sick. 308 00:19:09,996 --> 00:19:13,876 Speaker 2: And then I was in graduate school for social work. 309 00:19:14,116 --> 00:19:17,996 Speaker 2: At that point in my life, it was twenty seventeen. 310 00:19:18,796 --> 00:19:21,036 Speaker 2: I had been sick for what I would have said, 311 00:19:21,036 --> 00:19:24,276 Speaker 2: sick for six years, and I had started to craft 312 00:19:24,316 --> 00:19:26,916 Speaker 2: a new life for myself as a sick person. You know. 313 00:19:26,996 --> 00:19:30,156 Speaker 2: I had moved to California, where the temperature was easier 314 00:19:30,156 --> 00:19:32,996 Speaker 2: for me to manage. I made friends, I had started 315 00:19:33,076 --> 00:19:36,876 Speaker 2: dating my now husband, David. I had this full life, 316 00:19:37,436 --> 00:19:40,876 Speaker 2: but I still had this unresolved relationship with my very 317 00:19:40,996 --> 00:19:45,316 Speaker 2: sick body. And I had a semester where I could 318 00:19:45,396 --> 00:19:48,676 Speaker 2: do an independent study, and so I developed my own curriculum, 319 00:19:49,276 --> 00:19:54,236 Speaker 2: and the title of my independent study was Disability and Grief. 320 00:19:55,036 --> 00:19:57,396 Speaker 2: And it's interesting looking back at that, because it's clear 321 00:19:57,516 --> 00:19:59,196 Speaker 2: that there was part of me that was wanting to 322 00:19:59,236 --> 00:20:01,956 Speaker 2: wrestle with disability, because why would I have created this 323 00:20:02,036 --> 00:20:05,356 Speaker 2: independent study and this reading list for myself? But I 324 00:20:06,796 --> 00:20:10,916 Speaker 2: made myself a reading list of ability scholars and disability 325 00:20:10,916 --> 00:20:14,436 Speaker 2: thinkers and memoirists and philosophers, and then I spent a 326 00:20:14,476 --> 00:20:20,596 Speaker 2: semester reading them. And the first book I read was 327 00:20:20,596 --> 00:20:25,676 Speaker 2: a book called Minority Body. And at the beginning of 328 00:20:25,716 --> 00:20:33,196 Speaker 2: the book, doctor Barnes Elizabeth says that disability in itself 329 00:20:34,316 --> 00:20:38,916 Speaker 2: is not necessarily worse than not being disabled, that it's 330 00:20:39,076 --> 00:20:43,156 Speaker 2: the mere difference instead of a bad difference, and that 331 00:20:43,316 --> 00:20:47,116 Speaker 2: being disabled is a way of having a minority body. 332 00:20:47,316 --> 00:20:49,556 Speaker 2: Like there's the majority of the way bodies function, and 333 00:20:49,556 --> 00:20:52,076 Speaker 2: then there's the minority of the way, and disability is 334 00:20:52,116 --> 00:20:54,836 Speaker 2: the minority way, and that is not a value judgment, 335 00:20:55,756 --> 00:20:59,196 Speaker 2: and something about the way my brain works. It's like 336 00:20:59,436 --> 00:21:06,596 Speaker 2: this logic, this philosophy. I was just like, oh, okay, 337 00:21:06,636 --> 00:21:10,316 Speaker 2: becoming sick wasn't when my body or wasn't like it 338 00:21:10,396 --> 00:21:14,996 Speaker 2: worked and stopped working. But my body went from this 339 00:21:15,076 --> 00:21:18,516 Speaker 2: one way of being and now it is this way 340 00:21:19,716 --> 00:21:23,636 Speaker 2: and it's up to me to decide the meaning behind that. 341 00:21:24,236 --> 00:21:31,876 Speaker 2: It isn't an inherent loss. And then what happened after 342 00:21:31,916 --> 00:21:35,596 Speaker 2: I read Elizabeth's book is I read a couple dozen 343 00:21:35,756 --> 00:21:39,236 Speaker 2: other books by disabled authors, and I read poetry and 344 00:21:39,316 --> 00:21:42,796 Speaker 2: memoir I read like Ronda Olkin's instruction on how to 345 00:21:42,836 --> 00:21:45,556 Speaker 2: teach disabled social work. You know, I read this breath 346 00:21:45,676 --> 00:21:49,516 Speaker 2: of work by disabled writers, and while I decided to 347 00:21:49,556 --> 00:21:53,556 Speaker 2: identify as disabled because I wanted to be one of 348 00:21:53,596 --> 00:21:57,356 Speaker 2: these people, like I was reading the most brilliant and 349 00:21:57,516 --> 00:22:01,556 Speaker 2: creative revolutionaries. It felt like there was this group of 350 00:22:01,636 --> 00:22:06,876 Speaker 2: people who were saying the way that you were before 351 00:22:07,396 --> 00:22:11,356 Speaker 2: when you thought that a good enough life was up 352 00:22:11,356 --> 00:22:14,236 Speaker 2: to you, when you thought it was just a matter 353 00:22:14,356 --> 00:22:19,596 Speaker 2: of working harder, that is a message from the world, 354 00:22:20,636 --> 00:22:24,916 Speaker 2: and that disability is a counter argument. It's a way 355 00:22:24,956 --> 00:22:29,916 Speaker 2: of saying everything we believe about what matters, or about 356 00:22:29,956 --> 00:22:32,356 Speaker 2: what we should strive for, or about what we're capable of, 357 00:22:32,556 --> 00:22:35,236 Speaker 2: all of that may be wrong, and let's consider a 358 00:22:35,276 --> 00:22:38,796 Speaker 2: different perspective. And I just thought, like, I want to 359 00:22:38,836 --> 00:22:41,756 Speaker 2: be one of you. And so it felt like an honor. 360 00:22:42,036 --> 00:22:45,556 Speaker 2: It felt like I had transitioned into a disabled body 361 00:22:45,596 --> 00:22:49,836 Speaker 2: without realizing it, and that by acknowledging that identity, I 362 00:22:49,916 --> 00:22:54,916 Speaker 2: got to be part of the greatest group of people 363 00:22:54,956 --> 00:22:56,156 Speaker 2: I had ever been introduced to. 364 00:22:56,956 --> 00:23:00,316 Speaker 1: Wow, you're right about the fact that this was the 365 00:23:00,356 --> 00:23:04,116 Speaker 1: first time that you considered the idea that quote. If 366 00:23:04,236 --> 00:23:07,236 Speaker 1: like it's harder for a disabled person, we should consider 367 00:23:07,316 --> 00:23:10,196 Speaker 1: the possibility that it's not our body or minds that 368 00:23:10,236 --> 00:23:13,076 Speaker 1: are to blame, but the social structures that we navigate 369 00:23:13,156 --> 00:23:17,956 Speaker 1: with those bodies and minds. And one insight that was 370 00:23:17,956 --> 00:23:22,556 Speaker 1: so thought provoking is those who are not disabled don't 371 00:23:22,596 --> 00:23:26,316 Speaker 1: get to define the disabled experience through their vantage points. 372 00:23:26,316 --> 00:23:31,516 Speaker 1: Since goodness and wellness and worthiness is all just a 373 00:23:31,556 --> 00:23:33,836 Speaker 1: state of mind for any given person. 374 00:23:33,796 --> 00:23:37,436 Speaker 2: That's exactly it. I get to decide what my life 375 00:23:39,356 --> 00:23:44,556 Speaker 2: means now, and if you're sorry for me like that pity. 376 00:23:44,876 --> 00:23:48,596 Speaker 2: I really think pity is like just bumping right up 377 00:23:48,596 --> 00:23:52,916 Speaker 2: against disdain. I think pity is so dangerous. It's not empathy. 378 00:23:53,196 --> 00:23:55,556 Speaker 2: There's such a difference, and I think we need to 379 00:23:55,556 --> 00:23:59,396 Speaker 2: be so careful about pitying another person's life based on 380 00:23:59,436 --> 00:24:02,356 Speaker 2: our own assumptions of what it would be like. And 381 00:24:02,436 --> 00:24:05,756 Speaker 2: I could decide I like my life less now like 382 00:24:05,796 --> 00:24:08,196 Speaker 2: I get to decide it. It doesn't mean every disabled 383 00:24:08,236 --> 00:24:10,556 Speaker 2: person has to be happy with their identity, but it 384 00:24:10,636 --> 00:24:13,316 Speaker 2: is up to the disabled person to decide. It is 385 00:24:13,396 --> 00:24:16,196 Speaker 2: not up to another person to say it is worse 386 00:24:16,276 --> 00:24:21,996 Speaker 2: to be disabled. And I'm so careful about this because 387 00:24:22,036 --> 00:24:24,276 Speaker 2: it's not a pressure for other people to feel this way. 388 00:24:24,316 --> 00:24:27,476 Speaker 2: And it's not overly trite, and it's not silver lining anything, 389 00:24:27,556 --> 00:24:31,836 Speaker 2: but I deeply mean that I would choose this version 390 00:24:31,876 --> 00:24:35,636 Speaker 2: of my life. That I like my life as a 391 00:24:35,676 --> 00:24:40,476 Speaker 2: disabled person far more than I liked my life before. 392 00:24:44,996 --> 00:24:47,236 Speaker 1: We'll be back in a moment with a slight change 393 00:24:47,236 --> 00:25:13,316 Speaker 1: of plans. As Jessica began to embrace her disability, she 394 00:25:13,396 --> 00:25:18,276 Speaker 1: no longer saw herself as someone who might one day recover. Instead, 395 00:25:18,596 --> 00:25:22,036 Speaker 1: she saw herself as someone whose body had changed and 396 00:25:22,076 --> 00:25:25,716 Speaker 1: who was now a member of a vibrant, powerful community. 397 00:25:26,596 --> 00:25:30,476 Speaker 1: And as Jessica began reimagining her life, she also began 398 00:25:30,596 --> 00:25:34,756 Speaker 1: to reconsider her thoughts on motherhood. She reflects on this 399 00:25:34,876 --> 00:25:39,116 Speaker 1: shift in her new book Unfit Parent, A Disabled Mother 400 00:25:39,356 --> 00:25:41,476 Speaker 1: Challenges and Inaccessible World. 401 00:25:42,636 --> 00:25:45,956 Speaker 2: So when I was in my twenties, people would always 402 00:25:45,996 --> 00:25:48,836 Speaker 2: talk about kids and who was having kids and who wasn't. 403 00:25:48,996 --> 00:25:51,036 Speaker 2: I always said I didn't want to, but I said 404 00:25:51,076 --> 00:25:53,796 Speaker 2: it was because I didn't want kids to cremate my style. 405 00:25:53,916 --> 00:25:55,316 Speaker 2: I was like, well, if I have kids, I won't 406 00:25:55,356 --> 00:25:58,476 Speaker 2: be able to travel like this. But the truth was, 407 00:25:59,996 --> 00:26:02,676 Speaker 2: I knew the way I talked to myself, and I 408 00:26:02,756 --> 00:26:07,356 Speaker 2: knew the way I treated myself, and I was positive 409 00:26:07,716 --> 00:26:09,596 Speaker 2: that if I had a kid, I would treat them 410 00:26:09,596 --> 00:26:12,276 Speaker 2: that way and that I would destroy them. I just 411 00:26:12,316 --> 00:26:16,156 Speaker 2: thought I could never I could never do this to 412 00:26:16,276 --> 00:26:18,836 Speaker 2: a child. I could never subject a child to me. 413 00:26:19,956 --> 00:26:24,756 Speaker 2: And then when I identified as disabled and sort of reckoned 414 00:26:24,796 --> 00:26:29,516 Speaker 2: with that, I started to like myself for the first 415 00:26:29,596 --> 00:26:31,116 Speaker 2: time in my life. 416 00:26:31,796 --> 00:26:34,676 Speaker 1: I'm assuming that wasn't a shift that happened for you overnight. 417 00:26:35,196 --> 00:26:41,156 Speaker 1: What unlocked this newfound compassion for yourself? What beliefs did 418 00:26:41,196 --> 00:26:45,276 Speaker 1: you have to revisit and reconstruct in order to start 419 00:26:45,316 --> 00:26:46,156 Speaker 1: to like yourself? 420 00:26:46,836 --> 00:26:49,116 Speaker 2: I think it was control. It has to be, because 421 00:26:49,156 --> 00:26:53,116 Speaker 2: for all those years I thought that it was in 422 00:26:53,196 --> 00:26:57,116 Speaker 2: my control to be perfect, or to form a perfect life, 423 00:26:57,196 --> 00:27:01,876 Speaker 2: or to be good enough. And becoming disabled where so 424 00:27:02,156 --> 00:27:05,196 Speaker 2: little is in my control. Now I cannot deceive myself 425 00:27:05,196 --> 00:27:09,516 Speaker 2: that perfections attainable, or that like the ideal life is 426 00:27:09,556 --> 00:27:14,516 Speaker 2: like close close at hand. It's you know, my life 427 00:27:14,556 --> 00:27:16,796 Speaker 2: is so different from what I had always pictured as 428 00:27:16,836 --> 00:27:20,636 Speaker 2: being perfect. I never stopped moving before I got sick, 429 00:27:21,036 --> 00:27:26,316 Speaker 2: and then I almost never am moving now. I mean, 430 00:27:26,396 --> 00:27:30,996 Speaker 2: I have had to get used to myself. I'm always 431 00:27:31,036 --> 00:27:34,396 Speaker 2: just stuck here in me, and like the force proximity 432 00:27:34,436 --> 00:27:38,596 Speaker 2: to my own brain, I had to make peace with 433 00:27:38,676 --> 00:27:41,716 Speaker 2: it and then eventually like it because I can't go anywhere. 434 00:27:42,836 --> 00:27:45,716 Speaker 1: You and your husband ultimately decided that you would like 435 00:27:45,836 --> 00:27:50,276 Speaker 1: to become parents. Do you remember having any specific concerns 436 00:27:50,556 --> 00:27:51,636 Speaker 1: entering parenthood. 437 00:27:52,436 --> 00:27:55,716 Speaker 2: Well, so, the way that David and I became parents, 438 00:27:56,116 --> 00:27:58,796 Speaker 2: we were foster parents, and we were not thinking we 439 00:27:58,796 --> 00:28:01,836 Speaker 2: would have a newborn, So my consideration it was a 440 00:28:01,876 --> 00:28:05,036 Speaker 2: little different. Our assumption is that we would have a 441 00:28:05,076 --> 00:28:08,516 Speaker 2: preteen or a teenager, and then we got our license 442 00:28:08,556 --> 00:28:10,756 Speaker 2: up through aged twelve, so then we thought we'd probably 443 00:28:11,236 --> 00:28:13,876 Speaker 2: be taking care of a preteen and only for a 444 00:28:13,876 --> 00:28:18,916 Speaker 2: temporary amount of time. And I had this moral conviction 445 00:28:19,516 --> 00:28:22,076 Speaker 2: that we needed to give our time and our space 446 00:28:22,196 --> 00:28:24,356 Speaker 2: to kids who needed a place to live. I just thought, 447 00:28:24,356 --> 00:28:27,356 Speaker 2: it is indefensible if we have a second bedroom and 448 00:28:27,396 --> 00:28:29,876 Speaker 2: I have the time and the capacity, that we don't 449 00:28:29,916 --> 00:28:32,196 Speaker 2: leave it open for a person who would need somewhere 450 00:28:32,236 --> 00:28:36,636 Speaker 2: to stay. And so because of my conviction about that, 451 00:28:36,796 --> 00:28:39,036 Speaker 2: I didn't have a lot of reservations. 452 00:28:39,516 --> 00:28:43,036 Speaker 1: Now, your foster parenting journey ended up being quite different 453 00:28:43,036 --> 00:28:46,436 Speaker 1: than what you expected, because you did not foster a teenager. 454 00:28:46,476 --> 00:28:48,636 Speaker 1: You fostered a newborn. So tell me about what that 455 00:28:48,716 --> 00:28:49,596 Speaker 1: experience was like. 456 00:28:50,836 --> 00:28:53,556 Speaker 2: We got a call at nine pm that there was 457 00:28:53,596 --> 00:28:55,996 Speaker 2: a newborn who needed a place for a few weeks, 458 00:28:56,116 --> 00:28:59,676 Speaker 2: and they asked if we could take her. We were 459 00:28:59,716 --> 00:29:02,796 Speaker 2: not expecting a newborn, but I have experience with babies 460 00:29:02,836 --> 00:29:06,236 Speaker 2: because I'm the oldest of many cousins and the oldest sibling, 461 00:29:06,356 --> 00:29:09,756 Speaker 2: and I really like babies, and so we said yeah. 462 00:29:09,796 --> 00:29:15,956 Speaker 2: And that's how I became a mom was twelve hours notice. 463 00:29:15,996 --> 00:29:19,316 Speaker 2: We didn't have baby supplies. I posted on the neighborhood 464 00:29:19,356 --> 00:29:22,556 Speaker 2: next door group and said, I unexpectedly have a newborn 465 00:29:22,796 --> 00:29:26,236 Speaker 2: if anyone has any extra supplies, And then people just 466 00:29:26,276 --> 00:29:28,756 Speaker 2: started dumping stuff off on our porch and we got 467 00:29:28,756 --> 00:29:34,196 Speaker 2: everything we needed within a day. And I think becoming 468 00:29:34,236 --> 00:29:40,316 Speaker 2: the parent of a newborn as a surprise is something 469 00:29:40,356 --> 00:29:43,516 Speaker 2: that saved me from parts of parenting that it would 470 00:29:43,516 --> 00:29:45,596 Speaker 2: have been very hard for me. I think I would 471 00:29:45,636 --> 00:29:48,916 Speaker 2: have worried so much. I would have worried about my disability. 472 00:29:48,916 --> 00:29:51,516 Speaker 2: I would have worried about the practical parts I would 473 00:29:51,516 --> 00:29:54,276 Speaker 2: have fallen into. Probably at that point, a lot more 474 00:29:54,316 --> 00:29:57,836 Speaker 2: of the perfectionism ideas. But because there was no notice, 475 00:29:57,876 --> 00:30:00,596 Speaker 2: there was no time to try to do it perfectly. 476 00:30:01,276 --> 00:30:03,316 Speaker 2: I was just with a friend yesterday and I pulled 477 00:30:03,396 --> 00:30:06,116 Speaker 2: up a photo on my phone of getting home from 478 00:30:06,116 --> 00:30:09,756 Speaker 2: the hospital with my daughter, and she was on my chest, 479 00:30:09,836 --> 00:30:12,076 Speaker 2: and then the computer was on my stomach, and on 480 00:30:12,116 --> 00:30:14,756 Speaker 2: my screen is a Google search how do you take 481 00:30:14,796 --> 00:30:15,676 Speaker 2: care of a newborn? 482 00:30:17,836 --> 00:30:22,596 Speaker 1: Wow, that's amazing. You've talked about how when you live 483 00:30:22,636 --> 00:30:26,236 Speaker 1: with the disability there is an added pressure to prove 484 00:30:26,316 --> 00:30:29,596 Speaker 1: your worthiness as a parent. Tell me more about that. 485 00:30:30,156 --> 00:30:33,836 Speaker 2: You know. When I interviewed people, particularly disabled women who 486 00:30:33,876 --> 00:30:37,876 Speaker 2: gave birth, all of them had had social services called 487 00:30:37,876 --> 00:30:40,356 Speaker 2: on them in the hospital. There's one woman I spoke 488 00:30:40,396 --> 00:30:43,796 Speaker 2: to who cried the first time she tried the breastfeed 489 00:30:43,836 --> 00:30:47,636 Speaker 2: in the hospital. She's blind, and her nurse called CPS 490 00:30:47,796 --> 00:30:49,916 Speaker 2: and said that she was worried that this mom wasn't 491 00:30:49,956 --> 00:30:55,676 Speaker 2: equipped to parent because she cried. And it's like these 492 00:30:55,716 --> 00:30:59,956 Speaker 2: standards that disabled people are held to are different and 493 00:31:00,156 --> 00:31:03,196 Speaker 2: higher than the standards that non disabled people are held to. 494 00:31:04,116 --> 00:31:07,836 Speaker 2: When I am out by myself, I'm largely invisible as 495 00:31:07,876 --> 00:31:10,596 Speaker 2: a person in a wheelchair. When I'm out with my kids. 496 00:31:10,596 --> 00:31:12,836 Speaker 2: I'll usually have one kid on my lap and holding 497 00:31:12,836 --> 00:31:16,756 Speaker 2: my other kid's hand. It is like we are a spectacle. 498 00:31:16,916 --> 00:31:19,476 Speaker 2: And I'm very aware of the stairs, and I'm very 499 00:31:19,516 --> 00:31:24,436 Speaker 2: careful to always be performing parenthood in those moments because 500 00:31:24,476 --> 00:31:28,676 Speaker 2: the risk to disable people of having a concerned bystander 501 00:31:28,796 --> 00:31:31,916 Speaker 2: is real. That disabled people lose custody of their kids 502 00:31:31,916 --> 00:31:36,276 Speaker 2: at just an exceedingly high rate, And so I feel 503 00:31:36,316 --> 00:31:39,916 Speaker 2: the eyes on me, and I kind of perform to it. 504 00:31:40,836 --> 00:31:42,236 Speaker 1: What does that performance look like? 505 00:31:44,516 --> 00:31:48,596 Speaker 2: Always smiling, always being super attentive and engaged. I would 506 00:31:48,676 --> 00:31:51,876 Speaker 2: never dare look bored or annoyed with my kids in public, 507 00:31:51,996 --> 00:31:55,076 Speaker 2: and obviously being bored with your kids is a fairly 508 00:31:55,156 --> 00:31:57,516 Speaker 2: normal behavior, but I would never do it in public. 509 00:31:58,756 --> 00:32:01,636 Speaker 1: Oh my god, I'm so incensed hearing that you have 510 00:32:01,676 --> 00:32:05,196 Speaker 1: to carry that extra burden that you're not afforded the 511 00:32:05,276 --> 00:32:08,876 Speaker 1: right that every non disabled parent has when it comes 512 00:32:08,876 --> 00:32:14,156 Speaker 1: to being impatient or losing your temper or being unbelievably 513 00:32:14,196 --> 00:32:17,636 Speaker 1: bored in the presence of your kids. One of the 514 00:32:17,676 --> 00:32:23,116 Speaker 1: most uplifting parts of your beautifully written book is that 515 00:32:24,836 --> 00:32:30,076 Speaker 1: you don't simply propose that disabled parents are great parents. 516 00:32:30,196 --> 00:32:33,796 Speaker 1: You actually argue that in many ways, they have built 517 00:32:33,836 --> 00:32:38,236 Speaker 1: mindsets over time that actually make them better prepared for parenting, 518 00:32:38,356 --> 00:32:42,956 Speaker 1: like more capable to be exceptional parents. I know that 519 00:32:42,996 --> 00:32:45,956 Speaker 1: these reflections took time to build, but tell me more 520 00:32:45,996 --> 00:32:46,436 Speaker 1: about that. 521 00:32:46,796 --> 00:32:48,516 Speaker 2: I mean, there's so many ways of looking at it, 522 00:32:48,596 --> 00:32:53,916 Speaker 2: but one is that particularly parenting, like highly intensive parenting, 523 00:32:54,916 --> 00:32:57,476 Speaker 2: parenting where we're sort of told that if we do 524 00:32:57,556 --> 00:33:01,396 Speaker 2: things well enough, or say things just the right way 525 00:33:01,436 --> 00:33:04,436 Speaker 2: to our kids, or handle screen time in just the 526 00:33:04,516 --> 00:33:08,036 Speaker 2: right way or the right schools, that we can somehow 527 00:33:08,196 --> 00:33:12,676 Speaker 2: insulate our kids from suffering or insulate ourselves from watching 528 00:33:12,796 --> 00:33:17,516 Speaker 2: our kids suffer. And disability is this like off ramp 529 00:33:17,516 --> 00:33:21,076 Speaker 2: from that In my experience, like people think being disabled 530 00:33:21,156 --> 00:33:25,396 Speaker 2: was kind of worst case scenario, that we are living 531 00:33:25,436 --> 00:33:28,276 Speaker 2: a life that no one wants to live. And because 532 00:33:28,316 --> 00:33:30,876 Speaker 2: of that, because we've been rejected, we get to say, okay, 533 00:33:30,916 --> 00:33:32,956 Speaker 2: then what do we value? And so I feel like 534 00:33:32,996 --> 00:33:37,076 Speaker 2: there's this entirely different value system that disability has brought 535 00:33:37,076 --> 00:33:41,116 Speaker 2: my parenting. I did an interview recently and she was asking, 536 00:33:42,116 --> 00:33:45,036 Speaker 2: how do you decide which activities to do every weekend? 537 00:33:45,036 --> 00:33:46,996 Speaker 2: Like how do you keep the weekends from being too 538 00:33:47,076 --> 00:33:52,036 Speaker 2: two packed? And I was like, oh, we do nothing. 539 00:33:53,956 --> 00:33:57,836 Speaker 2: I mean, yeah, last weekend. It was funny. David and 540 00:33:57,876 --> 00:33:59,636 Speaker 2: I on Saturday, we're like, oh, it's been such a 541 00:33:59,676 --> 00:34:01,876 Speaker 2: busy weekend, and then we reviewed what we had done. 542 00:34:02,556 --> 00:34:06,396 Speaker 2: The only thing we did was meet a friend at 543 00:34:06,436 --> 00:34:09,476 Speaker 2: a park two blocks away for an hour and a half. 544 00:34:10,636 --> 00:34:12,876 Speaker 2: And for us that was like, we had a huge weekend. 545 00:34:13,476 --> 00:34:15,636 Speaker 2: We don't sign our kids up for anything. They don't 546 00:34:15,676 --> 00:34:17,636 Speaker 2: want to be signed up. We think everyone in this 547 00:34:17,716 --> 00:34:22,076 Speaker 2: house needs to rest our. Expectations of performance is really low. 548 00:34:23,036 --> 00:34:27,076 Speaker 2: And I think I have brought that mindset into parenting 549 00:34:27,236 --> 00:34:30,556 Speaker 2: because I was like, I had to let go of 550 00:34:30,596 --> 00:34:33,356 Speaker 2: it in my own life first, and I think there's 551 00:34:33,436 --> 00:34:36,356 Speaker 2: real freedom there. So I think that's that's one way 552 00:34:36,356 --> 00:34:38,316 Speaker 2: that we're equipped. But then the other is that there's 553 00:34:38,356 --> 00:34:42,516 Speaker 2: this very like practical thing is that a kid's body 554 00:34:42,596 --> 00:34:45,076 Speaker 2: and mind and a baby's body and mind is just 555 00:34:45,116 --> 00:34:51,116 Speaker 2: like so needy and so unpredictable, and a disabled body 556 00:34:51,116 --> 00:34:53,516 Speaker 2: and mind is really needy and unpredictable. And I think 557 00:34:53,556 --> 00:34:57,036 Speaker 2: there's just like really practical overlap and skills that the 558 00:34:57,076 --> 00:35:00,396 Speaker 2: skill set I need to take care of myself and 559 00:35:00,476 --> 00:35:03,916 Speaker 2: to survive in a very inaccessible world are a lot 560 00:35:04,036 --> 00:35:07,236 Speaker 2: of the same skills I need to take care of 561 00:35:07,316 --> 00:35:12,756 Speaker 2: my kids and to help them be equipped for the world. 562 00:35:12,836 --> 00:35:14,556 Speaker 2: And so I just see, like it's almost like I 563 00:35:14,636 --> 00:35:17,556 Speaker 2: was training to parent when I became disabled. 564 00:35:18,396 --> 00:35:23,836 Speaker 1: Yeah, you've spoken about the fact that your disability has 565 00:35:23,876 --> 00:35:27,156 Speaker 1: helped you make peace with uncertainty. 566 00:35:27,796 --> 00:35:31,396 Speaker 2: Yeah. I mean, I think this micromanaging of our kids 567 00:35:31,436 --> 00:35:36,396 Speaker 2: and of our lives. I believe that it's coming from 568 00:35:38,036 --> 00:35:41,796 Speaker 2: the way we all are so scared of death and 569 00:35:41,876 --> 00:35:44,716 Speaker 2: so scared of the people we love dying, which is 570 00:35:44,876 --> 00:35:51,476 Speaker 2: such a normal thing to be afraid of, and it's 571 00:35:51,596 --> 00:35:56,596 Speaker 2: like we will do anything to avoid the fact that 572 00:35:56,636 --> 00:36:04,036 Speaker 2: the inevitable outcome of every one of our lives is death, 573 00:36:04,556 --> 00:36:07,836 Speaker 2: and that the thing that is true for each of 574 00:36:07,916 --> 00:36:09,636 Speaker 2: us is that we will suffer. And then when you 575 00:36:09,636 --> 00:36:12,836 Speaker 2: become a parent, the thing that's true is that my 576 00:36:13,036 --> 00:36:18,116 Speaker 2: children will suffer in this world. That like I want 577 00:36:18,236 --> 00:36:22,516 Speaker 2: them to be okay, and they will not be okay forever, 578 00:36:23,156 --> 00:36:27,756 Speaker 2: and like there's nothing I could do to change that. Yeah, 579 00:36:27,836 --> 00:36:32,116 Speaker 2: And I think looking straight at that is so intolerable 580 00:36:33,516 --> 00:36:36,836 Speaker 2: that we panic and do a thousand things to try 581 00:36:36,876 --> 00:36:41,716 Speaker 2: to protect them and protect us. And I think for me, 582 00:36:42,116 --> 00:36:45,676 Speaker 2: the way my body suffers and the way I felt 583 00:36:45,716 --> 00:36:48,436 Speaker 2: so close to not making it, and the way I've 584 00:36:48,436 --> 00:36:53,716 Speaker 2: had to sort of confront my own precarity is that 585 00:36:55,916 --> 00:36:59,636 Speaker 2: it's painful, but it is a thing I can tolerate 586 00:37:00,956 --> 00:37:04,116 Speaker 2: that my kids will suffer. I mean, it hurts so much, 587 00:37:04,156 --> 00:37:07,556 Speaker 2: but I god, I mean I can barely tolerate it. 588 00:37:07,716 --> 00:37:09,676 Speaker 2: But I can't change it. I guess that's it. I 589 00:37:09,756 --> 00:37:12,076 Speaker 2: just can't change it, and I have to live with it, 590 00:37:12,316 --> 00:37:15,996 Speaker 2: and I have to live the days with them with 591 00:37:16,236 --> 00:37:20,036 Speaker 2: the uncertainty that is part of being alive in these bodies. 592 00:37:21,516 --> 00:37:23,996 Speaker 1: Yeah, I kind of fascinating. Some of the studies you 593 00:37:24,076 --> 00:37:28,116 Speaker 1: cite in your book show that people with disabilities adapt 594 00:37:28,676 --> 00:37:31,756 Speaker 1: more quickly to things like cancer. Can you share a 595 00:37:31,756 --> 00:37:32,676 Speaker 1: little bit more about that. 596 00:37:33,436 --> 00:37:36,076 Speaker 2: We've already had to say, wait, this isn't the way 597 00:37:36,116 --> 00:37:38,556 Speaker 2: it was supposed to be, and then dealt with that. 598 00:37:38,716 --> 00:37:42,076 Speaker 2: I think this like jarring change of like this isn't 599 00:37:42,076 --> 00:37:45,476 Speaker 2: the way life should be. I think that often hits 600 00:37:45,556 --> 00:37:47,996 Speaker 2: less hard for someone who has lived with a disabled 601 00:37:47,996 --> 00:37:53,316 Speaker 2: body or mind, and I it's just so much as expectation. 602 00:37:55,316 --> 00:37:59,436 Speaker 2: I think, like the conclusion I've come to is that 603 00:37:59,476 --> 00:38:02,076 Speaker 2: we are very bad at knowing what will make us happy. 604 00:38:02,156 --> 00:38:06,436 Speaker 2: We're very bad at making ourselves happy. And that's so 605 00:38:06,596 --> 00:38:09,316 Speaker 2: much of like how we suffer from changes because we 606 00:38:09,356 --> 00:38:12,036 Speaker 2: think it's not what life is supposed to look like 607 00:38:12,196 --> 00:38:15,516 Speaker 2: or what we are supposed to be like. And what 608 00:38:15,556 --> 00:38:18,156 Speaker 2: I've learned is we are just no good at knowing 609 00:38:18,196 --> 00:38:20,916 Speaker 2: what we can endure and what will change us and 610 00:38:21,076 --> 00:38:22,996 Speaker 2: who we will be on the other side, we are 611 00:38:23,076 --> 00:38:25,796 Speaker 2: so bad at predicting our own happiness. 612 00:38:26,116 --> 00:38:29,356 Speaker 1: Yes, we forget that we ourselves will be altered by 613 00:38:29,396 --> 00:38:33,796 Speaker 1: the change. The change will influence our abilities and perspectives 614 00:38:33,876 --> 00:38:37,236 Speaker 1: and values and ways that are hard to predict. And 615 00:38:37,556 --> 00:38:40,036 Speaker 1: I just feel like there's an ounce of hope for 616 00:38:40,116 --> 00:38:42,956 Speaker 1: all of us who feel just totally overwhelmed at the 617 00:38:42,956 --> 00:38:45,756 Speaker 1: outset of change, that like, there's another version of Maya 618 00:38:45,876 --> 00:38:47,836 Speaker 1: waiting for me on the other side of change, that 619 00:38:47,916 --> 00:38:50,756 Speaker 1: there was another version of Jessica waiting for you that 620 00:38:50,916 --> 00:38:52,716 Speaker 1: was going to be able to tackle this. 621 00:38:53,236 --> 00:38:55,556 Speaker 2: I really love that, and it touches on something I 622 00:38:55,556 --> 00:38:57,716 Speaker 2: talk about in the book is that people imagine disabled 623 00:38:57,756 --> 00:39:01,356 Speaker 2: parenting as their current version of parenting minus a thing 624 00:39:01,516 --> 00:39:05,076 Speaker 2: like how would I take care of this baby? The 625 00:39:05,116 --> 00:39:08,556 Speaker 2: way I do now, but then minus my vision if 626 00:39:08,556 --> 00:39:13,396 Speaker 2: I were blind, But like there's a different version of 627 00:39:13,436 --> 00:39:16,916 Speaker 2: you that would do it, like a it's a new thing. 628 00:39:17,236 --> 00:39:21,516 Speaker 2: It's not you. Yeah, it's not the current version, Jessica. 629 00:39:21,556 --> 00:39:24,716 Speaker 1: We started off our conversation with you reflecting on the 630 00:39:24,716 --> 00:39:27,276 Speaker 1: fact that for so much of your life you were 631 00:39:27,356 --> 00:39:30,796 Speaker 1: chasing goodness, but that feeling was always so elusive, like 632 00:39:30,836 --> 00:39:34,636 Speaker 1: you never quite felt like you never quite felt like 633 00:39:34,676 --> 00:39:38,596 Speaker 1: you could get there. And so now, reflecting back as 634 00:39:38,596 --> 00:39:42,036 Speaker 1: someone who's gone through everything you've gone through, who has 635 00:39:42,076 --> 00:39:45,476 Speaker 1: taken on new identities like being a disabled person and 636 00:39:45,516 --> 00:39:50,156 Speaker 1: being a mother, how do you feel about yourself now? 637 00:39:51,836 --> 00:39:56,196 Speaker 2: I don't feel perfect, and I God, I hope I 638 00:39:56,236 --> 00:40:02,276 Speaker 2: continue to change and learn, but I I do just 639 00:40:02,556 --> 00:40:07,916 Speaker 2: I like who I am. I have a set of 640 00:40:08,036 --> 00:40:13,196 Speaker 2: characteristics and I can see them, and I live inside myself. 641 00:40:13,356 --> 00:40:18,556 Speaker 2: I think I'm kind. I like the way I think 642 00:40:21,196 --> 00:40:25,636 Speaker 2: I am an excellent mother, and I am a open 643 00:40:25,996 --> 00:40:34,196 Speaker 2: and patient spouse, and I my own head and my 644 00:40:34,316 --> 00:40:41,156 Speaker 2: own emotions are a place that I feel really lucky 645 00:40:41,436 --> 00:40:47,516 Speaker 2: and thankful to live with and to be in. Yeah, 646 00:40:47,876 --> 00:40:52,116 Speaker 2: it's a like I feel so wildly lucky to like 647 00:40:52,236 --> 00:40:56,476 Speaker 2: myself because I didn't for so long. But when I 648 00:40:56,516 --> 00:41:00,556 Speaker 2: am just with myself and I'm with my own thoughts 649 00:41:00,796 --> 00:41:04,196 Speaker 2: and I'm feeling my feelings or analyzing something or working 650 00:41:04,236 --> 00:41:08,836 Speaker 2: through something or figuring something out, it is not always pleasant. 651 00:41:09,116 --> 00:41:13,956 Speaker 2: There's plenty of hard stuff, there's pain, there's suffering, but 652 00:41:14,076 --> 00:41:17,396 Speaker 2: I am glad to be with me doing it. 653 00:41:39,236 --> 00:41:42,476 Speaker 1: Hey, thanks so much for listening. If you enjoyed this episode, 654 00:41:42,556 --> 00:41:45,796 Speaker 1: don't forget to follow a Slight Change of Plans wherever 655 00:41:45,836 --> 00:41:49,276 Speaker 1: you get your podcasts. Next time I talk with author 656 00:41:49,396 --> 00:41:52,676 Speaker 1: and podcast host and a sale about the art of 657 00:41:52,716 --> 00:41:55,596 Speaker 1: a hard conversation. We want to say something that's going 658 00:41:55,636 --> 00:42:00,236 Speaker 1: to make it feel tolerable and sometimes dig things just 659 00:42:00,276 --> 00:42:03,396 Speaker 1: need a little bit of air. That's next week on 660 00:42:03,476 --> 00:42:07,636 Speaker 1: a Slight Change of Plans see then A Slight Change 661 00:42:07,636 --> 00:42:10,796 Speaker 1: of Plans is created in an executive produce by me 662 00:42:10,956 --> 00:42:15,236 Speaker 1: Maya Shunker. The Slight Changed family includes our showrunner Tyler Green, 663 00:42:15,676 --> 00:42:20,236 Speaker 1: our senior editor Kate Parkinson Morgan, our producers Britney Cronin 664 00:42:20,316 --> 00:42:24,516 Speaker 1: and Megan Lubn, and our sound engineer Erica Huang. Louis 665 00:42:24,556 --> 00:42:27,956 Speaker 1: Scara wrote our delightful theme song, and Ginger Smith helped 666 00:42:27,996 --> 00:42:30,716 Speaker 1: arrange the vocals. A Slight Change of Plans is a 667 00:42:30,716 --> 00:42:34,316 Speaker 1: production of Pushkin Industries, so big thanks to everyone there, 668 00:42:34,596 --> 00:42:37,876 Speaker 1: and of course a very special thanks to Jimmy Lee. 669 00:42:38,316 --> 00:42:40,836 Speaker 1: You can follow a Slight Change of Plans on Instagram 670 00:42:40,876 --> 00:42:43,276 Speaker 1: at doctor Maya Schunker. See you next week.