1 00:00:14,956 --> 00:00:15,396 Speaker 1: Pushkin. 2 00:00:30,436 --> 00:00:34,116 Speaker 2: He pulls me aside and says, I have to talk 3 00:00:34,116 --> 00:00:38,796 Speaker 2: to you about something. It's about Mom, And in that moment, 4 00:00:39,636 --> 00:00:42,436 Speaker 2: I just couldn't picture what it could possibly be, except 5 00:00:42,436 --> 00:00:43,556 Speaker 2: that it had to be awful. 6 00:00:44,556 --> 00:00:48,276 Speaker 1: Sonya Vella was already grieving something awful. Her mom had 7 00:00:48,356 --> 00:00:51,756 Speaker 1: recently died from a rare disease, and now her dad 8 00:00:51,836 --> 00:00:54,836 Speaker 1: was telling her that the disease was genetic and that 9 00:00:54,876 --> 00:00:57,676 Speaker 1: there was a fifty percent chance Sonya had inherited the 10 00:00:57,756 --> 00:00:59,596 Speaker 1: same gene that killed her mom. 11 00:01:00,236 --> 00:01:04,236 Speaker 2: Everything felt scary, and not knowing was taking a huge 12 00:01:04,236 --> 00:01:07,676 Speaker 2: amount of energy from me. I would wake up every 13 00:01:07,796 --> 00:01:10,796 Speaker 2: day flipping the coin in my head, and it was 14 00:01:10,876 --> 00:01:13,196 Speaker 2: like my mind did not have a place to rest. 15 00:01:13,716 --> 00:01:14,716 Speaker 2: It could never rest. 16 00:01:18,556 --> 00:01:25,156 Speaker 1: On today's episode waiting for the coin to flip. I'm 17 00:01:25,156 --> 00:01:28,036 Speaker 1: Maya Shunker and this is a slight change of plans, 18 00:01:28,276 --> 00:01:30,556 Speaker 1: a show about who we are and who we become 19 00:01:30,876 --> 00:01:45,036 Speaker 1: in the face of a big change. Sonia had always 20 00:01:45,036 --> 00:01:48,276 Speaker 1: been close to her mom. She'd sent her care packages 21 00:01:48,276 --> 00:01:51,236 Speaker 1: in the mail, they talked on the phone all the time, 22 00:01:51,996 --> 00:01:54,836 Speaker 1: and when Sonya decided to marry her boyfriend Eric in 23 00:01:54,876 --> 00:01:58,196 Speaker 1: the backyard of her childhood home, her mom stepped up 24 00:01:58,236 --> 00:02:02,276 Speaker 1: and planned the entire thing, but the following spring in 25 00:02:02,276 --> 00:02:07,356 Speaker 1: twenty ten, her mom began experiencing some troubling symptoms. She 26 00:02:07,476 --> 00:02:11,796 Speaker 1: was constantly getting confused and had issues seeing. When Sonia 27 00:02:11,876 --> 00:02:14,516 Speaker 1: called her mom to wish her a happy fifty second birthday, 28 00:02:14,916 --> 00:02:17,236 Speaker 1: it was clear something was seriously wrong. 29 00:02:18,116 --> 00:02:22,556 Speaker 2: That was the first time that I heard that she 30 00:02:22,876 --> 00:02:27,196 Speaker 2: was not making sense. She would start a sentence and 31 00:02:27,236 --> 00:02:29,556 Speaker 2: it would be pointed in a certain direction, and then 32 00:02:29,596 --> 00:02:32,876 Speaker 2: it would just lose momentum and focus, and she couldn't 33 00:02:32,916 --> 00:02:35,396 Speaker 2: quite get to the end, and it didn't quite add 34 00:02:35,476 --> 00:02:40,356 Speaker 2: up to a conversation. And when I hung up the phone, 35 00:02:41,356 --> 00:02:44,716 Speaker 2: I felt a real heaviness that something was really wrong. 36 00:02:45,356 --> 00:02:47,276 Speaker 2: So it was incredibly scary. 37 00:02:48,676 --> 00:02:51,156 Speaker 1: How did things progress from there on out? 38 00:02:51,276 --> 00:02:55,476 Speaker 2: In May, I set aside time made a trip home, 39 00:02:56,076 --> 00:03:01,676 Speaker 2: not thinking that this was a catastrophic scenario, just thinking, wow, 40 00:03:01,716 --> 00:03:04,516 Speaker 2: Mom is really struggling, and I want to be there. 41 00:03:05,276 --> 00:03:08,876 Speaker 2: But I stepped out of the airport onto the curb 42 00:03:09,196 --> 00:03:12,036 Speaker 2: and my dad pulled up and she was sitting in 43 00:03:12,076 --> 00:03:17,436 Speaker 2: the passenger's side of their car, and she was hauntingly gaunt. 44 00:03:17,876 --> 00:03:22,356 Speaker 2: She had lost not just weight, but there was something 45 00:03:22,676 --> 00:03:26,436 Speaker 2: some vitality that had sort of sunken out of her face. 46 00:03:27,076 --> 00:03:30,476 Speaker 2: Her whole body had sort of shriveled, and she was 47 00:03:30,516 --> 00:03:34,116 Speaker 2: wearing I think a night dress with a jacket thrown 48 00:03:34,156 --> 00:03:36,836 Speaker 2: over it. She was not at that point able to 49 00:03:36,876 --> 00:03:39,916 Speaker 2: even step out of the car unaided. If she took 50 00:03:39,956 --> 00:03:42,796 Speaker 2: a step alone, she would fall. And she had lost 51 00:03:42,996 --> 00:03:46,996 Speaker 2: so much of her sort of cognitive presence that if 52 00:03:46,996 --> 00:03:50,156 Speaker 2: she fell and hit her head, she couldn't tell you 53 00:03:50,916 --> 00:03:53,596 Speaker 2: if it hurt or if it was like a big 54 00:03:53,636 --> 00:03:56,276 Speaker 2: deal or a small deal. So there was this constant 55 00:03:56,316 --> 00:03:59,796 Speaker 2: struggle between what she wanted to do, what she was 56 00:03:59,916 --> 00:04:02,436 Speaker 2: used to doing for herself and believed herself capable of, 57 00:04:02,916 --> 00:04:05,956 Speaker 2: and ME having to sort of leap to attention and 58 00:04:05,996 --> 00:04:08,876 Speaker 2: guide her and hold her hand. And it was heartbreaking 59 00:04:08,876 --> 00:04:13,516 Speaker 2: to feel like I was bothering her, to feel like 60 00:04:13,596 --> 00:04:15,636 Speaker 2: she just wanted to be left in peace, and I 61 00:04:15,636 --> 00:04:20,796 Speaker 2: couldn't do that. She would sometimes go into sort of 62 00:04:20,836 --> 00:04:25,956 Speaker 2: a full blown paranoid episode where there would be a 63 00:04:25,996 --> 00:04:28,036 Speaker 2: specific thing that she had on her mind and she 64 00:04:28,196 --> 00:04:31,596 Speaker 2: had to do it, or like the silly example that 65 00:04:31,676 --> 00:04:34,476 Speaker 2: I remember is that the remote control that the TV 66 00:04:34,676 --> 00:04:37,276 Speaker 2: was missing, and she was convinced that it was in 67 00:04:37,276 --> 00:04:41,236 Speaker 2: the pantry and the only thing that could like address 68 00:04:41,276 --> 00:04:43,116 Speaker 2: it for her is if I took every single thing 69 00:04:43,156 --> 00:04:46,716 Speaker 2: out of the pantry and these moments would come up 70 00:04:46,756 --> 00:04:49,356 Speaker 2: where the thing that's being asked is not reasonable and 71 00:04:49,396 --> 00:04:51,356 Speaker 2: doesn't make sense. But how much do you want to 72 00:04:51,356 --> 00:04:55,156 Speaker 2: resist someone who is so upset and is so confused? 73 00:04:56,556 --> 00:04:58,916 Speaker 1: What were doctors saying at this point? Was there any 74 00:04:58,996 --> 00:05:02,716 Speaker 1: explanation for the constellation of symptoms that she had. 75 00:05:03,396 --> 00:05:05,356 Speaker 2: All that could be done was to sort of generate 76 00:05:05,396 --> 00:05:08,876 Speaker 2: ideas and then test them. So it's constant doctors and 77 00:05:09,396 --> 00:05:12,316 Speaker 2: work and test results. And what I remember most from 78 00:05:12,396 --> 00:05:17,596 Speaker 2: that time is that every test that was done, even 79 00:05:17,636 --> 00:05:21,036 Speaker 2: if it would have been quite a bad diagnosis, we 80 00:05:21,036 --> 00:05:24,276 Speaker 2: were so hopeful that it would come back positive, just 81 00:05:24,316 --> 00:05:27,436 Speaker 2: so we would know. I do think that the total 82 00:05:28,076 --> 00:05:31,236 Speaker 2: mystery is part of the great strain of a time 83 00:05:31,356 --> 00:05:31,676 Speaker 2: like that. 84 00:05:32,676 --> 00:05:35,916 Speaker 1: So how long did this state last for with your mom? 85 00:05:36,596 --> 00:05:40,356 Speaker 2: I mean, in some ways the state was constantly changing. 86 00:05:40,996 --> 00:05:43,396 Speaker 2: The falls would come more frequently, and she would have 87 00:05:43,396 --> 00:05:45,436 Speaker 2: to be rushed to the hospital and she would get scanned, 88 00:05:45,996 --> 00:05:48,956 Speaker 2: and her ability to make verbal sense continued to go 89 00:05:48,996 --> 00:05:52,236 Speaker 2: down and down to the point where she wasn't really 90 00:05:52,316 --> 00:05:56,476 Speaker 2: able to communicate with us, and what sort of began 91 00:05:56,756 --> 00:06:00,156 Speaker 2: as a trickle of supportive systems kind of escalated to 92 00:06:00,276 --> 00:06:03,156 Speaker 2: full blown life support over the course of the summer. 93 00:06:04,076 --> 00:06:08,676 Speaker 2: It was harder and harder at that point to see 94 00:06:09,196 --> 00:06:13,636 Speaker 2: any form of engagement between her and the world except pain, 95 00:06:14,676 --> 00:06:18,436 Speaker 2: and that went on for many months, because this is 96 00:06:18,436 --> 00:06:20,356 Speaker 2: something I look back on with a lot of regret 97 00:06:20,436 --> 00:06:24,076 Speaker 2: and sadness. But we didn't have a diagnosis, and she 98 00:06:24,156 --> 00:06:27,236 Speaker 2: had written in her living will that she didn't want 99 00:06:27,236 --> 00:06:31,236 Speaker 2: to be kept alive with a terminal diagnosis. But absent 100 00:06:31,356 --> 00:06:35,116 Speaker 2: a diagnosis, we couldn't get a family consensus over whether 101 00:06:35,116 --> 00:06:36,716 Speaker 2: her condition was terminal or not. 102 00:06:39,196 --> 00:06:43,516 Speaker 1: So I'm just reflecting on what it's like to have 103 00:06:43,836 --> 00:06:47,996 Speaker 1: a loved one on life support, knowing this directive and 104 00:06:48,196 --> 00:06:50,436 Speaker 1: not being able to do anything. That's just like yes, 105 00:06:50,476 --> 00:06:51,236 Speaker 1: hell on Earth. 106 00:06:51,676 --> 00:06:54,356 Speaker 2: For me and my dad in particular, I think we 107 00:06:54,396 --> 00:06:59,276 Speaker 2: both felt that it was almost too excruciating to stand. 108 00:06:59,236 --> 00:07:03,716 Speaker 1: Yeah, did you, at any point along the way get 109 00:07:03,796 --> 00:07:07,556 Speaker 1: an answer about what afflicted your mom? 110 00:07:08,156 --> 00:07:13,076 Speaker 2: In December, a spinal fluid test came back that gave 111 00:07:13,156 --> 00:07:17,436 Speaker 2: the doctors enough confidence to say we have a possible 112 00:07:17,476 --> 00:07:19,116 Speaker 2: diagnosis of preon disease. 113 00:07:19,836 --> 00:07:22,476 Speaker 1: Do you mind sharing a bit more about what preon 114 00:07:22,556 --> 00:07:25,036 Speaker 1: disease is and what kind of impact it has. 115 00:07:25,556 --> 00:07:29,756 Speaker 2: Sure, so, pre on disease. It's a rapidly progressive dementia 116 00:07:30,596 --> 00:07:36,356 Speaker 2: and it causes people to sort of lose all of 117 00:07:36,436 --> 00:07:39,716 Speaker 2: their abilities, which is really where my mom was at 118 00:07:39,716 --> 00:07:42,716 Speaker 2: the end, just not able to move, not able to speak, 119 00:07:43,236 --> 00:07:46,556 Speaker 2: and preon disease is unusual for being able to move 120 00:07:46,596 --> 00:07:49,396 Speaker 2: so fast. Sometimes it was like watching a time lapse 121 00:07:49,476 --> 00:07:54,316 Speaker 2: video of someone grow old. I just couldn't believe that 122 00:07:54,356 --> 00:07:58,956 Speaker 2: it was actually progressing. Every day we hear stories about 123 00:07:58,996 --> 00:08:02,436 Speaker 2: people dying within weeks of their first symptom, and the 124 00:08:02,596 --> 00:08:06,836 Speaker 2: average is maybe five months from your very first symptom. 125 00:08:07,916 --> 00:08:13,116 Speaker 2: It is just astoundingly quick, and you compare it to 126 00:08:13,156 --> 00:08:18,156 Speaker 2: other neurodegenerative diseases, and this one is like a lightning strike. 127 00:08:18,836 --> 00:08:23,796 Speaker 2: Preon disease is terminal, it is untreatable, and on the 128 00:08:23,836 --> 00:08:26,796 Speaker 2: basis of that, we were sort of able to gather 129 00:08:27,276 --> 00:08:29,196 Speaker 2: and come through a consensus to take her off of 130 00:08:29,236 --> 00:08:33,876 Speaker 2: life support, so that happened right before Christmas. We brought 131 00:08:33,876 --> 00:08:36,716 Speaker 2: her to the local hospital where my dad had worked 132 00:08:36,756 --> 00:08:39,676 Speaker 2: for you know, thirty years, and that's where she passed away. 133 00:08:40,116 --> 00:08:44,356 Speaker 2: And even that day, that floor of the hospital was 134 00:08:44,436 --> 00:08:48,476 Speaker 2: just packed with people with our loved ones, and her 135 00:08:48,516 --> 00:08:55,076 Speaker 2: funeral was huge, and it really meant something to have 136 00:08:55,156 --> 00:08:59,876 Speaker 2: this huge upswelling of support. I would say that against 137 00:08:59,916 --> 00:09:03,916 Speaker 2: the backdrop of this incredibly lonely and confusing year, and 138 00:09:04,036 --> 00:09:07,276 Speaker 2: given that it was really along the way that I 139 00:09:07,316 --> 00:09:09,716 Speaker 2: had been saying goodbye to my mom and not at 140 00:09:09,716 --> 00:09:13,756 Speaker 2: the moment she died. Putting all that together, her death 141 00:09:13,836 --> 00:09:15,196 Speaker 2: was like the best part of that year. 142 00:09:17,516 --> 00:09:19,476 Speaker 1: So what did the aftermath look like for you and 143 00:09:19,516 --> 00:09:22,076 Speaker 1: your family after your mom passed? 144 00:09:22,676 --> 00:09:25,476 Speaker 2: So I felt myself trying to step back into a 145 00:09:25,556 --> 00:09:31,276 Speaker 2: rhythm of daily life and with you know, fits and starts, 146 00:09:31,716 --> 00:09:36,076 Speaker 2: with good days and bad days. But I became concerned 147 00:09:36,076 --> 00:09:40,156 Speaker 2: as the months went on that my dad wasn't doing well. 148 00:09:41,516 --> 00:09:44,356 Speaker 2: When we were home in October, this is ten months 149 00:09:44,356 --> 00:09:47,556 Speaker 2: out and Eric and I are home in Pennsylvania and 150 00:09:47,996 --> 00:09:51,676 Speaker 2: seeing my dad in person, he did seem worse than 151 00:09:51,676 --> 00:09:55,516 Speaker 2: he had just a few months prior, and so tired, 152 00:09:56,196 --> 00:09:58,556 Speaker 2: and I found that I was really worried about him. 153 00:09:59,516 --> 00:10:02,956 Speaker 2: And then as Eric and I are preparing to leave. 154 00:10:03,956 --> 00:10:07,796 Speaker 2: My dad pulls me aside and says, I have to 155 00:10:07,836 --> 00:10:12,716 Speaker 2: talk to you about something about Mom. And in that moment, 156 00:10:14,596 --> 00:10:19,956 Speaker 2: the sort of wrongness that I had been sensing around me, 157 00:10:20,756 --> 00:10:23,156 Speaker 2: I could feel it coming to a head, and I 158 00:10:23,236 --> 00:10:27,676 Speaker 2: felt it in my stomach like I knew that whatever 159 00:10:27,716 --> 00:10:30,436 Speaker 2: came next it was going to connect these dots. I 160 00:10:30,476 --> 00:10:33,236 Speaker 2: just couldn't picture what it could possibly be, except that 161 00:10:33,276 --> 00:10:39,236 Speaker 2: it had to be awful. So I just waited to 162 00:10:39,276 --> 00:10:42,436 Speaker 2: be told. And what he told me was it's about mom. 163 00:10:43,316 --> 00:10:51,556 Speaker 2: It's about Mom's disease. It was genetic. So that's how 164 00:10:51,596 --> 00:10:53,676 Speaker 2: I learned that I was at fifty to fifty risk 165 00:10:53,916 --> 00:10:59,556 Speaker 2: of having inherited the mutation that causes genetic prean disease 166 00:10:59,996 --> 00:11:00,956 Speaker 2: that had killed my mom. 167 00:11:05,276 --> 00:11:07,836 Speaker 1: How do you respond to news like that, Sonya. 168 00:11:09,916 --> 00:11:14,876 Speaker 2: Physically, what I felt was that everything was falling, and 169 00:11:14,916 --> 00:11:18,596 Speaker 2: me as well, all just falling like through open space. 170 00:11:19,156 --> 00:11:21,316 Speaker 2: I was sort of catapulted into a space of like 171 00:11:21,396 --> 00:11:26,036 Speaker 2: eerie clarity. I remember asking my dad really specific questions, 172 00:11:26,116 --> 00:11:32,156 Speaker 2: like is this mutation dominant or recessive? And he's a physician, 173 00:11:32,796 --> 00:11:34,596 Speaker 2: but what he said to me in that moment was 174 00:11:34,756 --> 00:11:38,996 Speaker 2: I don't know, and I don't believe that he didn't 175 00:11:39,036 --> 00:11:41,996 Speaker 2: know what I believe was. He had had to push 176 00:11:42,036 --> 00:11:45,916 Speaker 2: himself so hard to convey that piece of information to 177 00:11:45,956 --> 00:11:48,756 Speaker 2: me that he was at his limit. So I think 178 00:11:49,076 --> 00:11:52,556 Speaker 2: he was the person suffering the most, not just in 179 00:11:52,596 --> 00:11:55,076 Speaker 2: that day, but in all the days since he had 180 00:11:55,516 --> 00:11:59,236 Speaker 2: received this information and fretted about it and thought about 181 00:11:59,236 --> 00:12:04,716 Speaker 2: how to tell me. I also, in that first moment, 182 00:12:05,476 --> 00:12:09,116 Speaker 2: besides just marveling at what he had been dealing with 183 00:12:09,556 --> 00:12:16,076 Speaker 2: silently alone, my mind went immediately to Eric and how 184 00:12:18,876 --> 00:12:24,676 Speaker 2: this could be true for him. I felt immediately that 185 00:12:25,556 --> 00:12:31,716 Speaker 2: I couldn't go to pieces because this couldn't possibly be 186 00:12:32,556 --> 00:12:34,476 Speaker 2: as bad for me as it was for my dad, 187 00:12:34,476 --> 00:12:36,196 Speaker 2: and as it was going to be for Eric. 188 00:12:41,436 --> 00:12:44,516 Speaker 1: How and when did you tell Eric? 189 00:12:46,436 --> 00:12:48,876 Speaker 2: We had to go to the airport, and somehow that 190 00:12:48,956 --> 00:12:52,716 Speaker 2: still seemed important to catch our flight. So I didn't 191 00:12:52,756 --> 00:12:55,356 Speaker 2: tell him before we left the house, and I didn't 192 00:12:55,396 --> 00:12:59,756 Speaker 2: tell him on the road. But he knows me. It 193 00:12:59,876 --> 00:13:03,796 Speaker 2: was so obvious that I was holding something really really 194 00:13:03,836 --> 00:13:09,716 Speaker 2: heavy and trying to time when I was like release 195 00:13:09,796 --> 00:13:13,836 Speaker 2: that information. It was just torturing him. So we got 196 00:13:13,876 --> 00:13:15,356 Speaker 2: there and we got on the plane, and I told 197 00:13:15,396 --> 00:13:18,236 Speaker 2: him on the plane do you remember the exact words 198 00:13:18,276 --> 00:13:19,956 Speaker 2: you shared with him, like what were you able to 199 00:13:19,956 --> 00:13:23,276 Speaker 2: get out? My best guess at the exact words would be, 200 00:13:25,556 --> 00:13:31,356 Speaker 2: my mom's disease was genetic and I'm at risk. I 201 00:13:31,436 --> 00:13:35,836 Speaker 2: remember that he cried and I held him and he 202 00:13:36,116 --> 00:13:38,356 Speaker 2: said at one point, how can they do this to us? 203 00:13:39,796 --> 00:13:46,556 Speaker 2: The feeling that I remember from that conversation is like 204 00:13:46,636 --> 00:13:49,956 Speaker 2: the force of trying to rip a piece of paper 205 00:13:50,036 --> 00:13:52,996 Speaker 2: or a piece of fabric in half with your hands. 206 00:13:53,476 --> 00:13:56,476 Speaker 2: That was the feeling in my mind. There was just 207 00:13:56,596 --> 00:14:01,876 Speaker 2: this unbearable feeling of our world breaking, of it being 208 00:14:01,956 --> 00:14:05,996 Speaker 2: torn apart. Like I remember a flight attendant coming over 209 00:14:06,196 --> 00:14:11,356 Speaker 2: and asking if we were okay, asking if Eric was okay, 210 00:14:11,516 --> 00:14:15,636 Speaker 2: because we were just holding each other and crying. The 211 00:14:15,676 --> 00:14:19,636 Speaker 2: plane got us home, and immediately we took the next 212 00:14:19,716 --> 00:14:23,516 Speaker 2: day off work, like everything that I did felt scary, 213 00:14:23,556 --> 00:14:27,236 Speaker 2: Going to sleep felt scary. That next day we called 214 00:14:27,716 --> 00:14:31,196 Speaker 2: the National pren Disease Surveillance Center. We talked to people there. 215 00:14:32,476 --> 00:14:37,036 Speaker 2: We were very, very set on finding a way to 216 00:14:37,076 --> 00:14:39,956 Speaker 2: get tested right away. 217 00:14:40,036 --> 00:14:44,036 Speaker 1: You know, you say it so straightforwardly, and it's so 218 00:14:44,356 --> 00:14:46,876 Speaker 1: not obvious to me in that situation that I would 219 00:14:46,876 --> 00:14:50,996 Speaker 1: have chosen to get tested or wanted someone I loved 220 00:14:50,996 --> 00:14:54,476 Speaker 1: to get tested. And so I'm so curious about your 221 00:14:54,716 --> 00:14:57,836 Speaker 1: psychology at the time and how it is that you 222 00:14:57,876 --> 00:15:00,396 Speaker 1: and Eric came to the decision, Like was it even 223 00:15:00,436 --> 00:15:01,836 Speaker 1: a point of conversation? Now? 224 00:15:02,516 --> 00:15:05,596 Speaker 2: That's the interesting thing is at the time it wasn't 225 00:15:05,676 --> 00:15:08,076 Speaker 2: framed up like a decision that we were making together. 226 00:15:08,516 --> 00:15:11,516 Speaker 2: It was an stinct that we both had people say 227 00:15:11,556 --> 00:15:14,156 Speaker 2: to me all the time. But is an ignorance bliss 228 00:15:14,396 --> 00:15:17,956 Speaker 2: and I think there are scenarios in which it can be. 229 00:15:18,276 --> 00:15:20,236 Speaker 2: I just think that that was not the option in 230 00:15:20,276 --> 00:15:25,316 Speaker 2: front of us. We both understood. I think from that 231 00:15:25,396 --> 00:15:30,916 Speaker 2: first moment that limbo for us was torture, and that 232 00:15:31,476 --> 00:15:35,716 Speaker 2: this only deepened as the weeks ticked along and we 233 00:15:35,716 --> 00:15:38,396 Speaker 2: were scurrying around trying to figure out how to get 234 00:15:38,396 --> 00:15:40,636 Speaker 2: me tested, and it was hoop after who we were 235 00:15:40,716 --> 00:15:44,636 Speaker 2: jumping through, and the limbo was getting prolonged. I would 236 00:15:44,636 --> 00:15:47,476 Speaker 2: wake up every day flipping the coin in my head 237 00:15:47,956 --> 00:15:50,076 Speaker 2: and it was like my mind did not have a 238 00:15:50,076 --> 00:15:52,436 Speaker 2: place to rest, it could never rest. 239 00:15:53,196 --> 00:15:57,396 Speaker 1: I think it is such a relatable feeling that you're describing, 240 00:15:57,516 --> 00:16:02,276 Speaker 1: because living in a state of uncertainty really can feel torturous. Right. 241 00:16:02,316 --> 00:16:05,956 Speaker 1: There's this one study from psychology that I love sharing 242 00:16:05,996 --> 00:16:08,996 Speaker 1: and talking about, which is that people are more stressed 243 00:16:09,116 --> 00:16:11,156 Speaker 1: and they're told they have a fifty percent chance of 244 00:16:11,156 --> 00:16:13,236 Speaker 1: getting an electric shock than when they're told they have 245 00:16:13,316 --> 00:16:16,596 Speaker 1: a one hundred percent chance, which means we'd rather be 246 00:16:16,676 --> 00:16:19,036 Speaker 1: certain that a really terrible thing is going to happen 247 00:16:19,476 --> 00:16:22,236 Speaker 1: than to have to manage with any feelings of uncertainty 248 00:16:22,236 --> 00:16:27,156 Speaker 1: and ambiguity. And it's just wild to see the result 249 00:16:27,236 --> 00:16:30,116 Speaker 1: from that small little study play out in your life. 250 00:16:30,156 --> 00:16:32,836 Speaker 1: I mean, you experienced the real life version of. 251 00:16:32,796 --> 00:16:37,116 Speaker 2: This, yes, exactly. I mean also on my mind was 252 00:16:37,156 --> 00:16:39,516 Speaker 2: the idea that there was a fifty percent chance that 253 00:16:39,556 --> 00:16:43,196 Speaker 2: I could set my dad and Eric free from having 254 00:16:43,276 --> 00:16:45,836 Speaker 2: to worry about this. So that was a big thing, 255 00:16:46,396 --> 00:16:50,716 Speaker 2: and I really felt not knowing was taking a huge 256 00:16:50,716 --> 00:16:53,596 Speaker 2: amount of energy from me, and that if I knew 257 00:16:53,756 --> 00:16:57,516 Speaker 2: one way or the other, that it would require rearrangement 258 00:16:57,796 --> 00:17:00,036 Speaker 2: of the stuff in my head, but then we would 259 00:17:00,076 --> 00:17:03,716 Speaker 2: reach a stable place where it wasn't a constant balancing 260 00:17:03,796 --> 00:17:06,436 Speaker 2: act of weighing the fifty percent good and the fifty 261 00:17:06,476 --> 00:17:10,876 Speaker 2: percent bad, and it wouldn't ambush me at surprising moments 262 00:17:11,276 --> 00:17:14,436 Speaker 2: that Limbo it played games with me. I'm not a 263 00:17:14,476 --> 00:17:19,116 Speaker 2: superstitious person, but I felt superstition trying to get in. Yeah, 264 00:17:19,156 --> 00:17:20,916 Speaker 2: I could feel it, trying to seep through the crack, 265 00:17:21,076 --> 00:17:23,636 Speaker 2: trying to look for signs and things like that. Yes, 266 00:17:23,676 --> 00:17:25,596 Speaker 2: And I was like, this is not how I want 267 00:17:25,636 --> 00:17:28,996 Speaker 2: to live. I don't want everything in this world to 268 00:17:29,036 --> 00:17:32,636 Speaker 2: seem like some pointer at this fact that I could 269 00:17:32,636 --> 00:17:34,956 Speaker 2: just choose to learn instead of guessing for the rest 270 00:17:34,956 --> 00:17:35,916 Speaker 2: of my life. 271 00:17:36,956 --> 00:17:41,036 Speaker 1: After the break, Sonia gets the test results. We'll be 272 00:17:41,076 --> 00:17:46,196 Speaker 1: back in a moment with a slight change of plans. 273 00:17:52,236 --> 00:17:54,596 Speaker 1: Sonya was twenty seven when she found out she was 274 00:17:54,636 --> 00:17:59,196 Speaker 1: at risk for a fatal neurodegenerative disease, a disease that 275 00:17:59,276 --> 00:18:03,196 Speaker 1: had killed her mom at fifty two. Doctors told Sonya 276 00:18:03,316 --> 00:18:05,516 Speaker 1: there was a fifty to fifty chance she had inherited 277 00:18:05,556 --> 00:18:10,116 Speaker 1: a mutation that causes the disease. At the time, Sonya 278 00:18:10,236 --> 00:18:12,876 Speaker 1: was fresh out of law school and newly married to 279 00:18:12,916 --> 00:18:16,796 Speaker 1: her husband Eric, and for her, living in Limbo was 280 00:18:16,876 --> 00:18:20,356 Speaker 1: not an option, so she decided to get tested and 281 00:18:20,476 --> 00:18:23,996 Speaker 1: find out if she had the mutation. If I had 282 00:18:24,036 --> 00:18:27,116 Speaker 1: asked you at that moment in time. If this comes 283 00:18:27,156 --> 00:18:30,596 Speaker 1: back yes, will it meaningfully change the way that you 284 00:18:31,276 --> 00:18:33,676 Speaker 1: live your life moving forward? What would you have told me? 285 00:18:36,556 --> 00:18:39,476 Speaker 2: You know, I had one clear vision for how it 286 00:18:39,516 --> 00:18:42,276 Speaker 2: could change my life, which is that if it came 287 00:18:42,316 --> 00:18:47,156 Speaker 2: back yes, I knew that Eric and I could try 288 00:18:47,476 --> 00:18:49,916 Speaker 2: to jump through a bunch of fancy hoops to have 289 00:18:50,036 --> 00:18:53,596 Speaker 2: kids who didn't inherit my mutation. And I think I 290 00:18:53,596 --> 00:18:56,996 Speaker 2: would have said, if it comes back positive, we are 291 00:18:57,036 --> 00:19:00,956 Speaker 2: going to try our darnedest to have healthy kids. What 292 00:19:01,036 --> 00:19:03,916 Speaker 2: was it like to get the results. We're sitting in 293 00:19:03,956 --> 00:19:07,876 Speaker 2: this procedure room where the test is going to be 294 00:19:07,956 --> 00:19:10,276 Speaker 2: unveiled to me, and people are sort of coming and 295 00:19:10,316 --> 00:19:12,956 Speaker 2: going and just doing their jobs as people do in 296 00:19:12,996 --> 00:19:15,956 Speaker 2: that hospital environment. And a couple of people came by 297 00:19:15,996 --> 00:19:18,556 Speaker 2: and they were laughing, and then they laughed, and I 298 00:19:18,596 --> 00:19:21,516 Speaker 2: was like, Oh, if like someone was about to receive 299 00:19:21,636 --> 00:19:24,516 Speaker 2: potentially the worst news of her life in this room, 300 00:19:24,676 --> 00:19:27,316 Speaker 2: they wouldn't be laughing, which of course is not how 301 00:19:27,316 --> 00:19:31,356 Speaker 2: it works. And then the doctor said to me, the 302 00:19:31,436 --> 00:19:34,236 Speaker 2: same change that was found in your mother was found 303 00:19:34,276 --> 00:19:39,156 Speaker 2: in you. And I had the same response to when 304 00:19:39,196 --> 00:19:40,636 Speaker 2: my dad had told me I was at risk in 305 00:19:40,676 --> 00:19:44,076 Speaker 2: the first place, I got very calm and I held 306 00:19:44,116 --> 00:19:47,796 Speaker 2: on to Eric. It was mostly we just need more information. 307 00:19:48,836 --> 00:19:51,076 Speaker 2: My mom's age of onset was fifty one, but it 308 00:19:51,116 --> 00:19:53,876 Speaker 2: doesn't predict mine at all. It could basically happen any 309 00:19:53,916 --> 00:19:54,716 Speaker 2: time in adulthood. 310 00:19:55,276 --> 00:19:55,716 Speaker 1: Wow. 311 00:19:55,876 --> 00:19:59,396 Speaker 2: I called my dad and he got on the next 312 00:19:59,436 --> 00:20:02,476 Speaker 2: flight and came and spent the weekend with us. And 313 00:20:04,276 --> 00:20:08,236 Speaker 2: my memory of that weekend is that we spent it 314 00:20:08,556 --> 00:20:13,436 Speaker 2: sort of qietly doing normal things together, like everything hadn't 315 00:20:13,476 --> 00:20:15,236 Speaker 2: sort of blown away in the wind when the test 316 00:20:15,236 --> 00:20:19,396 Speaker 2: result was revealed. And I think for me, normalcy in 317 00:20:19,436 --> 00:20:22,796 Speaker 2: those next few days came from holding on to the 318 00:20:22,836 --> 00:20:27,076 Speaker 2: idea that nothing had acutely changed. My body hadn't changed, 319 00:20:27,476 --> 00:20:29,356 Speaker 2: that information had always been there. 320 00:20:30,956 --> 00:20:34,356 Speaker 1: What you said is so simple and yet so poignant 321 00:20:34,356 --> 00:20:39,236 Speaker 1: and powerful, which is the recognition that while this is 322 00:20:39,276 --> 00:20:44,356 Speaker 1: an earth shattering shift in one's psychology, the awareness that 323 00:20:44,436 --> 00:20:48,556 Speaker 1: you are positive for this mutation, your body hadn't really 324 00:20:48,676 --> 00:20:51,916 Speaker 1: changed in the minute before hearing the answer and the 325 00:20:51,916 --> 00:20:53,556 Speaker 1: minute after hearing the answer. 326 00:20:54,356 --> 00:20:58,036 Speaker 2: Yeah, definitely. And I remember thinking, even in those early days, 327 00:20:58,076 --> 00:21:03,316 Speaker 2: like whatever the truth is, it always was, Yes, exactly, 328 00:21:03,556 --> 00:21:05,796 Speaker 2: this is me. These are the terms on which I 329 00:21:05,876 --> 00:21:07,796 Speaker 2: was born. This is the body that I get. 330 00:21:08,116 --> 00:21:10,476 Speaker 1: But you had said something that was very interesting, which 331 00:21:10,516 --> 00:21:13,116 Speaker 1: was Eric asking on the flight, how could they do 332 00:21:13,236 --> 00:21:16,756 Speaker 1: this to us? And I don't know who they refers to, 333 00:21:17,316 --> 00:21:19,636 Speaker 1: but was there any feeling of anger at the universe 334 00:21:19,956 --> 00:21:22,916 Speaker 1: that was that this was the body you were born into. 335 00:21:23,876 --> 00:21:28,236 Speaker 2: I didn't feel a great instinct to shake my fist 336 00:21:28,276 --> 00:21:32,716 Speaker 2: at the universe about it, and it really surprised even me. 337 00:21:33,996 --> 00:21:38,156 Speaker 2: Even in those early days, like I would say, two 338 00:21:38,276 --> 00:21:42,756 Speaker 2: or three weeks after getting the test report, I was 339 00:21:42,996 --> 00:21:45,836 Speaker 2: already in a much better place than when I was 340 00:21:45,836 --> 00:21:46,396 Speaker 2: in the limbo. 341 00:21:47,076 --> 00:21:49,636 Speaker 1: Tell me more about that, because it's not like there 342 00:21:49,636 --> 00:21:51,756 Speaker 1: were a bunch of action steps you can take right 343 00:21:52,236 --> 00:21:55,396 Speaker 1: for me anyway, in my brain, the reason why I 344 00:21:55,476 --> 00:21:59,596 Speaker 1: value answers and definitiveness and certainty is when I feel 345 00:21:59,596 --> 00:22:03,116 Speaker 1: I can act on that information. Yes, And so I 346 00:22:03,156 --> 00:22:05,316 Speaker 1: am trying to figure out in just those early days 347 00:22:05,316 --> 00:22:09,076 Speaker 1: and weeks where the source of comfort came from, given 348 00:22:09,196 --> 00:22:11,476 Speaker 1: that there were no quote action items. 349 00:22:12,076 --> 00:22:17,156 Speaker 2: Yeah, I think one source of comfort was just the 350 00:22:17,196 --> 00:22:20,236 Speaker 2: amount of energy I got back from not having to 351 00:22:20,276 --> 00:22:26,396 Speaker 2: manage the limbo. Got it and something that brought me comfort. 352 00:22:27,116 --> 00:22:28,716 Speaker 2: It has taken me a long time to be able 353 00:22:28,716 --> 00:22:34,276 Speaker 2: to articulate this. But the experience of my mom's death 354 00:22:34,516 --> 00:22:38,676 Speaker 2: and her illness to me has sort of concentric circles 355 00:22:38,676 --> 00:22:44,516 Speaker 2: around it. Where dying at fifty two is tragic, losing 356 00:22:44,556 --> 00:22:47,876 Speaker 2: her young would have been tragic no matter what. And 357 00:22:48,116 --> 00:22:50,116 Speaker 2: when I look back at all this now, I see 358 00:22:50,156 --> 00:22:53,396 Speaker 2: like a primary tragedy of her dying young, and then 359 00:22:53,436 --> 00:22:58,196 Speaker 2: a secondary tragedy of the ways in which it was 360 00:22:59,356 --> 00:23:04,636 Speaker 2: prolonged and made more excruciating and more uncertain and more 361 00:23:05,876 --> 00:23:09,396 Speaker 2: uncomfortable in every way. It brought me a certain amount 362 00:23:09,436 --> 00:23:12,436 Speaker 2: of comfort to think this exact thing could happen to me. 363 00:23:12,956 --> 00:23:17,596 Speaker 2: But we wouldn't be going in blind right, that secondary 364 00:23:17,636 --> 00:23:20,276 Speaker 2: tragedy wouldn't have to happen. 365 00:23:20,396 --> 00:23:22,636 Speaker 1: Yeah, you could end your life with dignity, You could 366 00:23:22,716 --> 00:23:25,156 Speaker 1: choose things on your own terms. Right, it would be 367 00:23:25,196 --> 00:23:29,036 Speaker 1: a completely different process. It's strange to say right that 368 00:23:29,036 --> 00:23:32,116 Speaker 1: that was a source of comfort, but really it was. 369 00:23:36,156 --> 00:23:40,756 Speaker 1: You made a remarkably unusual pivot, I mean, with you 370 00:23:40,836 --> 00:23:44,196 Speaker 1: and your husband. And to set the scene for listeners, 371 00:23:44,236 --> 00:23:46,756 Speaker 1: at the time, you were a recent law school graduate. 372 00:23:47,156 --> 00:23:53,196 Speaker 1: Your husband was a transportation engineer, and yeah, then you 373 00:23:53,196 --> 00:23:57,476 Speaker 1: guys had your next slight change of plans, do you 374 00:23:57,556 --> 00:24:01,516 Speaker 1: mind just so you bring me on this world wind 375 00:24:01,556 --> 00:24:03,116 Speaker 1: journey of what happened next. 376 00:24:03,916 --> 00:24:07,796 Speaker 2: There was like a pivotal event, which is two weeks 377 00:24:07,916 --> 00:24:11,356 Speaker 2: after I got my netic test report, a friend shows 378 00:24:11,436 --> 00:24:14,156 Speaker 2: up with a thumb drive and he says, people are 379 00:24:14,156 --> 00:24:16,476 Speaker 2: working on this, like, you guys need to take a 380 00:24:16,516 --> 00:24:21,076 Speaker 2: look at these articles. Inwardly, my feeling was, hey, man, like, 381 00:24:21,156 --> 00:24:25,516 Speaker 2: we're still grieving. That's not the page we're on. But 382 00:24:25,876 --> 00:24:29,196 Speaker 2: he left the thumb drive at our house and it 383 00:24:29,236 --> 00:24:31,116 Speaker 2: was only a few days later that we were curious 384 00:24:31,196 --> 00:24:35,676 Speaker 2: enough to open it up, and just seeing that he 385 00:24:35,756 --> 00:24:37,676 Speaker 2: had managed to put together it was probably eight or 386 00:24:37,716 --> 00:24:44,316 Speaker 2: ten articles about drug development for preon disease changed things 387 00:24:44,356 --> 00:24:50,076 Speaker 2: for me because my mom's experience it had really convinced 388 00:24:50,076 --> 00:24:53,756 Speaker 2: me that no one knows anything about this, it is 389 00:24:53,916 --> 00:24:58,476 Speaker 2: so rare. But I realized that behind the scenes, there 390 00:24:58,516 --> 00:25:03,236 Speaker 2: were people who actually cared a lot about this specific 391 00:25:03,316 --> 00:25:07,196 Speaker 2: rare disease and knew a lot and cared enough to 392 00:25:07,196 --> 00:25:08,276 Speaker 2: try to develop drugs. 393 00:25:09,156 --> 00:25:10,276 Speaker 1: And so what did that lead you to? 394 00:25:11,076 --> 00:25:13,556 Speaker 2: About a month after getting my test report, ended up 395 00:25:13,596 --> 00:25:18,236 Speaker 2: quitting my job, thinking I'm taking a step back, because 396 00:25:18,276 --> 00:25:20,676 Speaker 2: I need to right now to sort of sort out 397 00:25:20,676 --> 00:25:24,796 Speaker 2: this piece of my life. I need to spend some 398 00:25:24,956 --> 00:25:28,756 Speaker 2: time building a vocabulary so that I can advocate for 399 00:25:28,796 --> 00:25:32,076 Speaker 2: myself in this space. I would walk into classes at MIT, 400 00:25:32,356 --> 00:25:35,396 Speaker 2: which like fortuitously was like down the street from our apartment, 401 00:25:35,956 --> 00:25:38,756 Speaker 2: and I'd go up to the professor and say, here's 402 00:25:38,796 --> 00:25:40,516 Speaker 2: my deal. Can I sit in? And no one ever 403 00:25:40,556 --> 00:25:40,876 Speaker 2: said no. 404 00:25:41,356 --> 00:25:44,716 Speaker 1: And these were like biomedical classes biology, Like what were 405 00:25:44,796 --> 00:25:45,476 Speaker 1: these classes? 406 00:25:45,756 --> 00:25:50,716 Speaker 2: Yes, So it was everything from cell biology to biochemistry 407 00:25:50,796 --> 00:25:54,876 Speaker 2: to there was like a class called protein misfolding and disease. 408 00:25:55,276 --> 00:25:57,356 Speaker 2: I was all in. I had the energy for it. 409 00:25:57,916 --> 00:26:01,276 Speaker 2: I would come home just like bursting to tell Eric 410 00:26:01,276 --> 00:26:05,516 Speaker 2: about all of it. And it was only a few 411 00:26:05,516 --> 00:26:10,276 Speaker 2: months before he was saying, hey, like this feels right 412 00:26:10,676 --> 00:26:12,996 Speaker 2: and I don't want to get left behind. I think 413 00:26:13,116 --> 00:26:16,556 Speaker 2: we suddenly felt emboldened to dream bigger. And the thing 414 00:26:16,596 --> 00:26:21,556 Speaker 2: we ended up deciding was there's enough science. There's enough 415 00:26:21,596 --> 00:26:24,396 Speaker 2: that's known for us to stand on top of that 416 00:26:25,156 --> 00:26:27,596 Speaker 2: and try to reach for a therapy in an informed way. 417 00:26:28,196 --> 00:26:31,476 Speaker 2: And that is the thing that's missing, So that needs 418 00:26:31,476 --> 00:26:34,716 Speaker 2: to be us. Yeah, we took this big gamble and 419 00:26:34,756 --> 00:26:38,196 Speaker 2: we enrolled in a PhD program, hoping that we could 420 00:26:38,236 --> 00:26:44,676 Speaker 2: find a place, a lab that would support us to 421 00:26:44,756 --> 00:26:49,836 Speaker 2: chase our mission while being students, and we got extremely lucky. 422 00:26:50,396 --> 00:26:57,516 Speaker 2: We did our PhD work under some really unbelievably supportive mentors, 423 00:26:57,876 --> 00:27:01,756 Speaker 2: and we got our PhDs in twenty nineteen and we 424 00:27:01,876 --> 00:27:05,996 Speaker 2: have been leading our own independent preon research group ever since. 425 00:27:07,076 --> 00:27:08,796 Speaker 1: So, Sonia, first, I want to just take a moment 426 00:27:08,836 --> 00:27:13,756 Speaker 1: to appreciate how extraordinary it is that you and Eric 427 00:27:13,756 --> 00:27:16,676 Speaker 1: have made this pivot. It's so inspiring to me the 428 00:27:16,676 --> 00:27:19,756 Speaker 1: way that you found agency in a world where you 429 00:27:19,796 --> 00:27:22,436 Speaker 1: were given so little, and then also just like get 430 00:27:22,476 --> 00:27:25,076 Speaker 1: science PhDs out of the blue, like you don't even 431 00:27:25,076 --> 00:27:28,436 Speaker 1: have I'm assuming you didn't have science backgrounds. I mean, 432 00:27:28,476 --> 00:27:32,556 Speaker 1: it's just been snow. Yes, it's just extraordinary. Can you 433 00:27:32,636 --> 00:27:34,956 Speaker 1: tell me a bit about the progress that you've made 434 00:27:35,116 --> 00:27:38,956 Speaker 1: and what it is like for you and your partner 435 00:27:39,196 --> 00:27:42,996 Speaker 1: to be fighting for your life in the work that 436 00:27:43,036 --> 00:27:45,236 Speaker 1: you do day to day. I mean it's fairly unusual 437 00:27:45,276 --> 00:27:48,356 Speaker 1: for someone's work to truly be their life. 438 00:27:49,036 --> 00:27:53,516 Speaker 2: Yes, I mean, when I look back, I have to 439 00:27:53,516 --> 00:27:59,636 Speaker 2: say that I think we've been extraordinarily fortunate to have 440 00:27:59,716 --> 00:28:03,196 Speaker 2: made the progress that we've made for us. That's enhanced 441 00:28:03,236 --> 00:28:05,316 Speaker 2: by the feeling that we're racing against a clock that 442 00:28:05,356 --> 00:28:08,996 Speaker 2: we can't see. We have no idea when I'll have onset, 443 00:28:09,876 --> 00:28:12,076 Speaker 2: and that is just a property of genetic preon disease. 444 00:28:12,716 --> 00:28:17,916 Speaker 2: Drug development is so much more complex and undertaking than 445 00:28:17,956 --> 00:28:22,436 Speaker 2: I ever could have pictured from the outside. It is massively, 446 00:28:22,516 --> 00:28:26,796 Speaker 2: massively difficult. I think that at this moment we have 447 00:28:27,396 --> 00:28:32,076 Speaker 2: hope around having the right ideas and the right tools 448 00:28:32,396 --> 00:28:35,996 Speaker 2: that exist on earth to do the job. And in 449 00:28:36,076 --> 00:28:39,596 Speaker 2: some ways, the closer we get, the more jeopardy I 450 00:28:39,676 --> 00:28:42,116 Speaker 2: feel there is, because in the beginning we had nothing 451 00:28:42,116 --> 00:28:50,836 Speaker 2: to lose, but now we actually have prospects for useful drugs. 452 00:28:51,316 --> 00:28:54,916 Speaker 2: And I am more heartbroken now by the people who 453 00:28:54,916 --> 00:28:57,156 Speaker 2: write to me and say my loved one is dying today, 454 00:28:57,556 --> 00:29:00,756 Speaker 2: because I feel that we are close, and the closer 455 00:29:00,796 --> 00:29:04,356 Speaker 2: we get, the harder it's going to be. So, you know, 456 00:29:04,756 --> 00:29:07,556 Speaker 2: to bring listeners up to speak with your current day life. 457 00:29:07,556 --> 00:29:10,356 Speaker 2: You and Eric did move forward with having children. Their 458 00:29:10,356 --> 00:29:14,276 Speaker 2: embryos were genetically screened. You stop the transmission of PREANMPT 459 00:29:14,316 --> 00:29:17,596 Speaker 2: disease in both your children. I can imagine in any 460 00:29:17,636 --> 00:29:20,516 Speaker 2: given day, thinking, do I spend more time in the 461 00:29:20,596 --> 00:29:22,316 Speaker 2: lab because we might be on the cusp of a 462 00:29:22,316 --> 00:29:24,956 Speaker 2: really valuable therapeutic, or do I go home and spend 463 00:29:25,476 --> 00:29:28,236 Speaker 2: the rest of the day with my kids because I 464 00:29:28,236 --> 00:29:30,356 Speaker 2: don't know how much time I have left, Like it 465 00:29:30,356 --> 00:29:34,756 Speaker 2: would just it introduces attention that it's very challenging, and 466 00:29:34,836 --> 00:29:37,516 Speaker 2: I'm sure there are people listening right now who face 467 00:29:38,036 --> 00:29:42,476 Speaker 2: some variant of this tension in their day to day lives. Sure, 468 00:29:43,556 --> 00:29:46,916 Speaker 2: parenthood became this new dimension of our life. I think 469 00:29:47,516 --> 00:29:51,036 Speaker 2: in some ways it has been very healthy for us 470 00:29:51,476 --> 00:29:55,436 Speaker 2: to have something outside of work that is in its 471 00:29:55,556 --> 00:30:02,116 Speaker 2: own way, so complex, so demanding, so totally immersive, because 472 00:30:02,156 --> 00:30:06,036 Speaker 2: I think for our personality types, we couldn't step out 473 00:30:06,036 --> 00:30:08,396 Speaker 2: of the intensity of work and then just kick back, 474 00:30:08,836 --> 00:30:12,036 Speaker 2: right like I think, you can't just subtract. You need 475 00:30:12,076 --> 00:30:15,676 Speaker 2: to substitute in a way with something that is equally gripping, 476 00:30:15,876 --> 00:30:18,716 Speaker 2: and that's certainly what parenthood has been for us. I 477 00:30:18,756 --> 00:30:24,676 Speaker 2: find that they just bring out a different dimension of 478 00:30:24,836 --> 00:30:29,516 Speaker 2: what a liveness is for me. I really think of 479 00:30:29,596 --> 00:30:34,676 Speaker 2: my relationship with my kids as being something that's happening 480 00:30:34,756 --> 00:30:38,756 Speaker 2: now and that is not at all to sort of 481 00:30:38,796 --> 00:30:41,756 Speaker 2: morbidly say, oh my god, I might not be here 482 00:30:41,796 --> 00:30:44,716 Speaker 2: next year. Although that's very much the case, It's not 483 00:30:44,756 --> 00:30:47,476 Speaker 2: so much the negative valance of like I might miss 484 00:30:47,476 --> 00:30:51,236 Speaker 2: all this stuff, so much as the positive valance of 485 00:30:52,356 --> 00:30:58,316 Speaker 2: anything could happen. Tremendous Uncertainty just is the nature of 486 00:30:58,356 --> 00:31:04,036 Speaker 2: our world, and we have each other right now. When 487 00:31:04,076 --> 00:31:07,956 Speaker 2: I think about myself dying young, which I certainly could, 488 00:31:09,236 --> 00:31:13,796 Speaker 2: I would fear, I think more than just that tragedy 489 00:31:14,436 --> 00:31:17,876 Speaker 2: is Eric and the kids sort of taking on that 490 00:31:17,956 --> 00:31:24,516 Speaker 2: mantle and self conceptualizing as a tragic family. I want 491 00:31:24,636 --> 00:31:27,996 Speaker 2: them to all take satisfaction that we put our love 492 00:31:27,996 --> 00:31:31,476 Speaker 2: in action and we did everything we could, and that 493 00:31:31,516 --> 00:31:36,316 Speaker 2: Mama and Baba are doing science to try to develop 494 00:31:36,356 --> 00:31:37,796 Speaker 2: a treatment for this rare disease. 495 00:31:38,556 --> 00:31:40,676 Speaker 1: You told me in the beginning of our conversation, Sonya, 496 00:31:40,756 --> 00:31:44,196 Speaker 1: that you have that allergy towards uncertainty, right, and that's 497 00:31:44,196 --> 00:31:45,876 Speaker 1: one of the reasons why you were so eager to 498 00:31:45,876 --> 00:31:48,236 Speaker 1: figure out if you are positive or negative for this mutation. 499 00:31:48,396 --> 00:31:52,356 Speaker 1: And I'm curious to know how your relationship with uncertainty 500 00:31:52,436 --> 00:31:56,436 Speaker 1: has evolved and what your relationship with control is like today. 501 00:31:57,716 --> 00:32:00,716 Speaker 2: Finding a route through which I could take some agency 502 00:32:01,396 --> 00:32:05,396 Speaker 2: in those early days of having my diagnosis made a huge, 503 00:32:05,516 --> 00:32:12,676 Speaker 2: huge difference, And I think at a certain point, you 504 00:32:13,156 --> 00:32:16,396 Speaker 2: push absolutely as hard as you can, and then you 505 00:32:16,436 --> 00:32:19,796 Speaker 2: take satisfaction in the fact that you pushed as hard 506 00:32:19,836 --> 00:32:24,476 Speaker 2: as you could. And I think in terms of like, gosh, 507 00:32:24,516 --> 00:32:27,276 Speaker 2: not to be melodramatic, but like avenging my mom's death. 508 00:32:27,676 --> 00:32:30,316 Speaker 2: I feel like we've done her proud. It's just within 509 00:32:30,316 --> 00:32:33,276 Speaker 2: the past few years that I have started to feel 510 00:32:33,876 --> 00:32:37,076 Speaker 2: a sense of like the piece on the other side 511 00:32:37,156 --> 00:32:41,756 Speaker 2: of all of that scrambling. I really think that we 512 00:32:41,796 --> 00:32:45,236 Speaker 2: are at the turning point where we see preon disease 513 00:32:45,276 --> 00:32:48,636 Speaker 2: in the middle distance as a treatable and preventable disease. 514 00:32:49,476 --> 00:32:52,516 Speaker 2: We have been part of turning the tide on this thing. 515 00:32:53,556 --> 00:32:56,236 Speaker 2: Whether it gets done in time for me, I would 516 00:32:56,516 --> 00:33:01,156 Speaker 2: love for it too, but I also have come to 517 00:33:01,236 --> 00:33:06,276 Speaker 2: believe that I need to get my satisfaction from what 518 00:33:06,356 --> 00:33:07,836 Speaker 2: we're doing now. 519 00:33:34,356 --> 00:33:37,196 Speaker 1: Hey, thanks so much for listening. If you enjoyed my 520 00:33:37,276 --> 00:33:40,756 Speaker 1: conversation with Sonia, you may enjoy my chat with neuroscientists 521 00:33:40,876 --> 00:33:43,876 Speaker 1: David Lindon. Will include a link to the episode in 522 00:33:43,916 --> 00:33:48,196 Speaker 1: the show notes. It's called a neuroscientist curious approach to dying. 523 00:33:49,516 --> 00:33:52,076 Speaker 1: Enjoy me next week when I talk to psychologist Hal 524 00:33:52,156 --> 00:33:55,836 Speaker 1: Hirschfield about the emotional connection we have to our future 525 00:33:55,876 --> 00:34:00,036 Speaker 1: selves and the benefit of strengthening that connection. See you 526 00:34:00,076 --> 00:34:13,436 Speaker 1: next week. A Slight Change of Plans is created, written, 527 00:34:13,436 --> 00:34:17,116 Speaker 1: and executive produced by me Maya Shunker. The Slight Change 528 00:34:17,156 --> 00:34:21,236 Speaker 1: family includes our showrunner Tyler Green, our senior editor Kate 529 00:34:21,276 --> 00:34:25,996 Speaker 1: Parkinson Morgan, our producer Trisha Bobita, and our sound engineer 530 00:34:26,076 --> 00:34:30,756 Speaker 1: Andrew Vestola. Luis Scara wrote our delightful theme song, and 531 00:34:30,836 --> 00:34:34,076 Speaker 1: Ginger Smith helped arrange the vocals. A Slight Change of 532 00:34:34,116 --> 00:34:37,476 Speaker 1: Plans is a production of Pushkin Industries, so big thanks 533 00:34:37,476 --> 00:34:41,316 Speaker 1: to everyone there, and of course a very special thanks 534 00:34:41,396 --> 00:34:44,036 Speaker 1: to Jimmy Lee. You can follow A Slight Change of 535 00:34:44,076 --> 00:34:47,996 Speaker 1: Plans on Instagram at doctor Maya Shunker. See you next week.