WEBVTT - The Coin Toss 0:00:14.956 --> 0:00:15.396 Pushkin. 0:00:30.436 --> 0:00:34.116 He pulls me aside and says, I have to talk 0:00:34.116 --> 0:00:38.796 to you about something. It's about Mom, And in that moment, 0:00:39.636 --> 0:00:42.436 I just couldn't picture what it could possibly be, except 0:00:42.436 --> 0:00:43.556 that it had to be awful. 0:00:44.556 --> 0:00:48.276 Sonya Vella was already grieving something awful. Her mom had 0:00:48.356 --> 0:00:51.756 recently died from a rare disease, and now her dad 0:00:51.836 --> 0:00:54.836 was telling her that the disease was genetic and that 0:00:54.876 --> 0:00:57.676 there was a fifty percent chance Sonya had inherited the 0:00:57.756 --> 0:00:59.596 same gene that killed her mom. 0:01:00.236 --> 0:01:04.236 Everything felt scary, and not knowing was taking a huge 0:01:04.236 --> 0:01:07.676 amount of energy from me. I would wake up every 0:01:07.796 --> 0:01:10.796 day flipping the coin in my head, and it was 0:01:10.876 --> 0:01:13.196 like my mind did not have a place to rest. 0:01:13.716 --> 0:01:14.716 It could never rest. 0:01:18.556 --> 0:01:25.156 On today's episode waiting for the coin to flip. I'm 0:01:25.156 --> 0:01:28.036 Maya Shunker and this is a slight change of plans, 0:01:28.276 --> 0:01:30.556 a show about who we are and who we become 0:01:30.876 --> 0:01:45.036 in the face of a big change. Sonia had always 0:01:45.036 --> 0:01:48.276 been close to her mom. She'd sent her care packages 0:01:48.276 --> 0:01:51.236 in the mail, they talked on the phone all the time, 0:01:51.996 --> 0:01:54.836 and when Sonya decided to marry her boyfriend Eric in 0:01:54.876 --> 0:01:58.196 the backyard of her childhood home, her mom stepped up 0:01:58.236 --> 0:02:02.276 and planned the entire thing, but the following spring in 0:02:02.276 --> 0:02:07.356 twenty ten, her mom began experiencing some troubling symptoms. She 0:02:07.476 --> 0:02:11.796 was constantly getting confused and had issues seeing. When Sonia 0:02:11.876 --> 0:02:14.516 called her mom to wish her a happy fifty second birthday, 0:02:14.916 --> 0:02:17.236 it was clear something was seriously wrong. 0:02:18.116 --> 0:02:22.556 That was the first time that I heard that she 0:02:22.876 --> 0:02:27.196 was not making sense. She would start a sentence and 0:02:27.236 --> 0:02:29.556 it would be pointed in a certain direction, and then 0:02:29.596 --> 0:02:32.876 it would just lose momentum and focus, and she couldn't 0:02:32.916 --> 0:02:35.396 quite get to the end, and it didn't quite add 0:02:35.476 --> 0:02:40.356 up to a conversation. And when I hung up the phone, 0:02:41.356 --> 0:02:44.716 I felt a real heaviness that something was really wrong. 0:02:45.356 --> 0:02:47.276 So it was incredibly scary. 0:02:48.676 --> 0:02:51.156 How did things progress from there on out? 0:02:51.276 --> 0:02:55.476 In May, I set aside time made a trip home, 0:02:56.076 --> 0:03:01.676 not thinking that this was a catastrophic scenario, just thinking, wow, 0:03:01.716 --> 0:03:04.516 Mom is really struggling, and I want to be there. 0:03:05.276 --> 0:03:08.876 But I stepped out of the airport onto the curb 0:03:09.196 --> 0:03:12.036 and my dad pulled up and she was sitting in 0:03:12.076 --> 0:03:17.436 the passenger's side of their car, and she was hauntingly gaunt. 0:03:17.876 --> 0:03:22.356 She had lost not just weight, but there was something 0:03:22.676 --> 0:03:26.436 some vitality that had sort of sunken out of her face. 0:03:27.076 --> 0:03:30.476 Her whole body had sort of shriveled, and she was 0:03:30.516 --> 0:03:34.116 wearing I think a night dress with a jacket thrown 0:03:34.156 --> 0:03:36.836 over it. She was not at that point able to 0:03:36.876 --> 0:03:39.916 even step out of the car unaided. If she took 0:03:39.956 --> 0:03:42.796 a step alone, she would fall. And she had lost 0:03:42.996 --> 0:03:46.996 so much of her sort of cognitive presence that if 0:03:46.996 --> 0:03:50.156 she fell and hit her head, she couldn't tell you 0:03:50.916 --> 0:03:53.596 if it hurt or if it was like a big 0:03:53.636 --> 0:03:56.276 deal or a small deal. So there was this constant 0:03:56.316 --> 0:03:59.796 struggle between what she wanted to do, what she was 0:03:59.916 --> 0:04:02.436 used to doing for herself and believed herself capable of, 0:04:02.916 --> 0:04:05.956 and ME having to sort of leap to attention and 0:04:05.996 --> 0:04:08.876 guide her and hold her hand. And it was heartbreaking 0:04:08.876 --> 0:04:13.516 to feel like I was bothering her, to feel like 0:04:13.596 --> 0:04:15.636 she just wanted to be left in peace, and I 0:04:15.636 --> 0:04:20.796 couldn't do that. She would sometimes go into sort of 0:04:20.836 --> 0:04:25.956 a full blown paranoid episode where there would be a 0:04:25.996 --> 0:04:28.036 specific thing that she had on her mind and she 0:04:28.196 --> 0:04:31.596 had to do it, or like the silly example that 0:04:31.676 --> 0:04:34.476 I remember is that the remote control that the TV 0:04:34.676 --> 0:04:37.276 was missing, and she was convinced that it was in 0:04:37.276 --> 0:04:41.236 the pantry and the only thing that could like address 0:04:41.276 --> 0:04:43.116 it for her is if I took every single thing 0:04:43.156 --> 0:04:46.716 out of the pantry and these moments would come up 0:04:46.756 --> 0:04:49.356 where the thing that's being asked is not reasonable and 0:04:49.396 --> 0:04:51.356 doesn't make sense. But how much do you want to 0:04:51.356 --> 0:04:55.156 resist someone who is so upset and is so confused? 0:04:56.556 --> 0:04:58.916 What were doctors saying at this point? Was there any 0:04:58.996 --> 0:05:02.716 explanation for the constellation of symptoms that she had. 0:05:03.396 --> 0:05:05.356 All that could be done was to sort of generate 0:05:05.396 --> 0:05:08.876 ideas and then test them. So it's constant doctors and 0:05:09.396 --> 0:05:12.316 work and test results. And what I remember most from 0:05:12.396 --> 0:05:17.596 that time is that every test that was done, even 0:05:17.636 --> 0:05:21.036 if it would have been quite a bad diagnosis, we 0:05:21.036 --> 0:05:24.276 were so hopeful that it would come back positive, just 0:05:24.316 --> 0:05:27.436 so we would know. I do think that the total 0:05:28.076 --> 0:05:31.236 mystery is part of the great strain of a time 0:05:31.356 --> 0:05:31.676 like that. 0:05:32.676 --> 0:05:35.916 So how long did this state last for with your mom? 0:05:36.596 --> 0:05:40.356 I mean, in some ways the state was constantly changing. 0:05:40.996 --> 0:05:43.396 The falls would come more frequently, and she would have 0:05:43.396 --> 0:05:45.436 to be rushed to the hospital and she would get scanned, 0:05:45.996 --> 0:05:48.956 and her ability to make verbal sense continued to go 0:05:48.996 --> 0:05:52.236 down and down to the point where she wasn't really 0:05:52.316 --> 0:05:56.476 able to communicate with us, and what sort of began 0:05:56.756 --> 0:06:00.156 as a trickle of supportive systems kind of escalated to 0:06:00.276 --> 0:06:03.156 full blown life support over the course of the summer. 0:06:04.076 --> 0:06:08.676 It was harder and harder at that point to see 0:06:09.196 --> 0:06:13.636 any form of engagement between her and the world except pain, 0:06:14.676 --> 0:06:18.436 and that went on for many months, because this is 0:06:18.436 --> 0:06:20.356 something I look back on with a lot of regret 0:06:20.436 --> 0:06:24.076 and sadness. But we didn't have a diagnosis, and she 0:06:24.156 --> 0:06:27.236 had written in her living will that she didn't want 0:06:27.236 --> 0:06:31.236 to be kept alive with a terminal diagnosis. But absent 0:06:31.356 --> 0:06:35.116 a diagnosis, we couldn't get a family consensus over whether 0:06:35.116 --> 0:06:36.716 her condition was terminal or not. 0:06:39.196 --> 0:06:43.516 So I'm just reflecting on what it's like to have 0:06:43.836 --> 0:06:47.996 a loved one on life support, knowing this directive and 0:06:48.196 --> 0:06:50.436 not being able to do anything. That's just like yes, 0:06:50.476 --> 0:06:51.236 hell on Earth. 0:06:51.676 --> 0:06:54.356 For me and my dad in particular, I think we 0:06:54.396 --> 0:06:59.276 both felt that it was almost too excruciating to stand. 0:06:59.236 --> 0:07:03.716 Yeah, did you, at any point along the way get 0:07:03.796 --> 0:07:07.556 an answer about what afflicted your mom? 0:07:08.156 --> 0:07:13.076 In December, a spinal fluid test came back that gave 0:07:13.156 --> 0:07:17.436 the doctors enough confidence to say we have a possible 0:07:17.476 --> 0:07:19.116 diagnosis of preon disease. 0:07:19.836 --> 0:07:22.476 Do you mind sharing a bit more about what preon 0:07:22.556 --> 0:07:25.036 disease is and what kind of impact it has. 0:07:25.556 --> 0:07:29.756 Sure, so, pre on disease. It's a rapidly progressive dementia 0:07:30.596 --> 0:07:36.356 and it causes people to sort of lose all of 0:07:36.436 --> 0:07:39.716 their abilities, which is really where my mom was at 0:07:39.716 --> 0:07:42.716 the end, just not able to move, not able to speak, 0:07:43.236 --> 0:07:46.556 and preon disease is unusual for being able to move 0:07:46.596 --> 0:07:49.396 so fast. Sometimes it was like watching a time lapse 0:07:49.476 --> 0:07:54.316 video of someone grow old. I just couldn't believe that 0:07:54.356 --> 0:07:58.956 it was actually progressing. Every day we hear stories about 0:07:58.996 --> 0:08:02.436 people dying within weeks of their first symptom, and the 0:08:02.596 --> 0:08:06.836 average is maybe five months from your very first symptom. 0:08:07.916 --> 0:08:13.116 It is just astoundingly quick, and you compare it to 0:08:13.156 --> 0:08:18.156 other neurodegenerative diseases, and this one is like a lightning strike. 0:08:18.836 --> 0:08:23.796 Preon disease is terminal, it is untreatable, and on the 0:08:23.836 --> 0:08:26.796 basis of that, we were sort of able to gather 0:08:27.276 --> 0:08:29.196 and come through a consensus to take her off of 0:08:29.236 --> 0:08:33.876 life support, so that happened right before Christmas. We brought 0:08:33.876 --> 0:08:36.716 her to the local hospital where my dad had worked 0:08:36.756 --> 0:08:39.676 for you know, thirty years, and that's where she passed away. 0:08:40.116 --> 0:08:44.356 And even that day, that floor of the hospital was 0:08:44.436 --> 0:08:48.476 just packed with people with our loved ones, and her 0:08:48.516 --> 0:08:55.076 funeral was huge, and it really meant something to have 0:08:55.156 --> 0:08:59.876 this huge upswelling of support. I would say that against 0:08:59.916 --> 0:09:03.916 the backdrop of this incredibly lonely and confusing year, and 0:09:04.036 --> 0:09:07.276 given that it was really along the way that I 0:09:07.316 --> 0:09:09.716 had been saying goodbye to my mom and not at 0:09:09.716 --> 0:09:13.756 the moment she died. Putting all that together, her death 0:09:13.836 --> 0:09:15.196 was like the best part of that year. 0:09:17.516 --> 0:09:19.476 So what did the aftermath look like for you and 0:09:19.516 --> 0:09:22.076 your family after your mom passed? 0:09:22.676 --> 0:09:25.476 So I felt myself trying to step back into a 0:09:25.556 --> 0:09:31.276 rhythm of daily life and with you know, fits and starts, 0:09:31.716 --> 0:09:36.076 with good days and bad days. But I became concerned 0:09:36.076 --> 0:09:40.156 as the months went on that my dad wasn't doing well. 0:09:41.516 --> 0:09:44.356 When we were home in October, this is ten months 0:09:44.356 --> 0:09:47.556 out and Eric and I are home in Pennsylvania and 0:09:47.996 --> 0:09:51.676 seeing my dad in person, he did seem worse than 0:09:51.676 --> 0:09:55.516 he had just a few months prior, and so tired, 0:09:56.196 --> 0:09:58.556 and I found that I was really worried about him. 0:09:59.516 --> 0:10:02.956 And then as Eric and I are preparing to leave. 0:10:03.956 --> 0:10:07.796 My dad pulls me aside and says, I have to 0:10:07.836 --> 0:10:12.716 talk to you about something about Mom. And in that moment, 0:10:14.596 --> 0:10:19.956 the sort of wrongness that I had been sensing around me, 0:10:20.756 --> 0:10:23.156 I could feel it coming to a head, and I 0:10:23.236 --> 0:10:27.676 felt it in my stomach like I knew that whatever 0:10:27.716 --> 0:10:30.436 came next it was going to connect these dots. I 0:10:30.476 --> 0:10:33.236 just couldn't picture what it could possibly be, except that 0:10:33.276 --> 0:10:39.236 it had to be awful. So I just waited to 0:10:39.276 --> 0:10:42.436 be told. And what he told me was it's about mom. 0:10:43.316 --> 0:10:51.556 It's about Mom's disease. It was genetic. So that's how 0:10:51.596 --> 0:10:53.676 I learned that I was at fifty to fifty risk 0:10:53.916 --> 0:10:59.556 of having inherited the mutation that causes genetic prean disease 0:10:59.996 --> 0:11:00.956 that had killed my mom. 0:11:05.276 --> 0:11:07.836 How do you respond to news like that, Sonya. 0:11:09.916 --> 0:11:14.876 Physically, what I felt was that everything was falling, and 0:11:14.916 --> 0:11:18.596 me as well, all just falling like through open space. 0:11:19.156 --> 0:11:21.316 I was sort of catapulted into a space of like 0:11:21.396 --> 0:11:26.036 eerie clarity. I remember asking my dad really specific questions, 0:11:26.116 --> 0:11:32.156 like is this mutation dominant or recessive? And he's a physician, 0:11:32.796 --> 0:11:34.596 but what he said to me in that moment was 0:11:34.756 --> 0:11:38.996 I don't know, and I don't believe that he didn't 0:11:39.036 --> 0:11:41.996 know what I believe was. He had had to push 0:11:42.036 --> 0:11:45.916 himself so hard to convey that piece of information to 0:11:45.956 --> 0:11:48.756 me that he was at his limit. So I think 0:11:49.076 --> 0:11:52.556 he was the person suffering the most, not just in 0:11:52.596 --> 0:11:55.076 that day, but in all the days since he had 0:11:55.516 --> 0:11:59.236 received this information and fretted about it and thought about 0:11:59.236 --> 0:12:04.716 how to tell me. I also, in that first moment, 0:12:05.476 --> 0:12:09.116 besides just marveling at what he had been dealing with 0:12:09.556 --> 0:12:16.076 silently alone, my mind went immediately to Eric and how 0:12:18.876 --> 0:12:24.676 this could be true for him. I felt immediately that 0:12:25.556 --> 0:12:31.716 I couldn't go to pieces because this couldn't possibly be 0:12:32.556 --> 0:12:34.476 as bad for me as it was for my dad, 0:12:34.476 --> 0:12:36.196 and as it was going to be for Eric. 0:12:41.436 --> 0:12:44.516 How and when did you tell Eric? 0:12:46.436 --> 0:12:48.876 We had to go to the airport, and somehow that 0:12:48.956 --> 0:12:52.716 still seemed important to catch our flight. So I didn't 0:12:52.756 --> 0:12:55.356 tell him before we left the house, and I didn't 0:12:55.396 --> 0:12:59.756 tell him on the road. But he knows me. It 0:12:59.876 --> 0:13:03.796 was so obvious that I was holding something really really 0:13:03.836 --> 0:13:09.716 heavy and trying to time when I was like release 0:13:09.796 --> 0:13:13.836 that information. It was just torturing him. So we got 0:13:13.876 --> 0:13:15.356 there and we got on the plane, and I told 0:13:15.396 --> 0:13:18.236 him on the plane do you remember the exact words 0:13:18.276 --> 0:13:19.956 you shared with him, like what were you able to 0:13:19.956 --> 0:13:23.276 get out? My best guess at the exact words would be, 0:13:25.556 --> 0:13:31.356 my mom's disease was genetic and I'm at risk. I 0:13:31.436 --> 0:13:35.836 remember that he cried and I held him and he 0:13:36.116 --> 0:13:38.356 said at one point, how can they do this to us? 0:13:39.796 --> 0:13:46.556 The feeling that I remember from that conversation is like 0:13:46.636 --> 0:13:49.956 the force of trying to rip a piece of paper 0:13:50.036 --> 0:13:52.996 or a piece of fabric in half with your hands. 0:13:53.476 --> 0:13:56.476 That was the feeling in my mind. There was just 0:13:56.596 --> 0:14:01.876 this unbearable feeling of our world breaking, of it being 0:14:01.956 --> 0:14:05.996 torn apart. Like I remember a flight attendant coming over 0:14:06.196 --> 0:14:11.356 and asking if we were okay, asking if Eric was okay, 0:14:11.516 --> 0:14:15.636 because we were just holding each other and crying. The 0:14:15.676 --> 0:14:19.636 plane got us home, and immediately we took the next 0:14:19.716 --> 0:14:23.516 day off work, like everything that I did felt scary, 0:14:23.556 --> 0:14:27.236 Going to sleep felt scary. That next day we called 0:14:27.716 --> 0:14:31.196 the National pren Disease Surveillance Center. We talked to people there. 0:14:32.476 --> 0:14:37.036 We were very, very set on finding a way to 0:14:37.076 --> 0:14:39.956 get tested right away. 0:14:40.036 --> 0:14:44.036 You know, you say it so straightforwardly, and it's so 0:14:44.356 --> 0:14:46.876 not obvious to me in that situation that I would 0:14:46.876 --> 0:14:50.996 have chosen to get tested or wanted someone I loved 0:14:50.996 --> 0:14:54.476 to get tested. And so I'm so curious about your 0:14:54.716 --> 0:14:57.836 psychology at the time and how it is that you 0:14:57.876 --> 0:15:00.396 and Eric came to the decision, Like was it even 0:15:00.436 --> 0:15:01.836 a point of conversation? Now? 0:15:02.516 --> 0:15:05.596 That's the interesting thing is at the time it wasn't 0:15:05.676 --> 0:15:08.076 framed up like a decision that we were making together. 0:15:08.516 --> 0:15:11.516 It was an stinct that we both had people say 0:15:11.556 --> 0:15:14.156 to me all the time. But is an ignorance bliss 0:15:14.396 --> 0:15:17.956 and I think there are scenarios in which it can be. 0:15:18.276 --> 0:15:20.236 I just think that that was not the option in 0:15:20.276 --> 0:15:25.316 front of us. We both understood. I think from that 0:15:25.396 --> 0:15:30.916 first moment that limbo for us was torture, and that 0:15:31.476 --> 0:15:35.716 this only deepened as the weeks ticked along and we 0:15:35.716 --> 0:15:38.396 were scurrying around trying to figure out how to get 0:15:38.396 --> 0:15:40.636 me tested, and it was hoop after who we were 0:15:40.716 --> 0:15:44.636 jumping through, and the limbo was getting prolonged. I would 0:15:44.636 --> 0:15:47.476 wake up every day flipping the coin in my head 0:15:47.956 --> 0:15:50.076 and it was like my mind did not have a 0:15:50.076 --> 0:15:52.436 place to rest, it could never rest. 0:15:53.196 --> 0:15:57.396 I think it is such a relatable feeling that you're describing, 0:15:57.516 --> 0:16:02.276 because living in a state of uncertainty really can feel torturous. Right. 0:16:02.316 --> 0:16:05.956 There's this one study from psychology that I love sharing 0:16:05.996 --> 0:16:08.996 and talking about, which is that people are more stressed 0:16:09.116 --> 0:16:11.156 and they're told they have a fifty percent chance of 0:16:11.156 --> 0:16:13.236 getting an electric shock than when they're told they have 0:16:13.316 --> 0:16:16.596 a one hundred percent chance, which means we'd rather be 0:16:16.676 --> 0:16:19.036 certain that a really terrible thing is going to happen 0:16:19.476 --> 0:16:22.236 than to have to manage with any feelings of uncertainty 0:16:22.236 --> 0:16:27.156 and ambiguity. And it's just wild to see the result 0:16:27.236 --> 0:16:30.116 from that small little study play out in your life. 0:16:30.156 --> 0:16:32.836 I mean, you experienced the real life version of. 0:16:32.796 --> 0:16:37.116 This, yes, exactly. I mean also on my mind was 0:16:37.156 --> 0:16:39.516 the idea that there was a fifty percent chance that 0:16:39.556 --> 0:16:43.196 I could set my dad and Eric free from having 0:16:43.276 --> 0:16:45.836 to worry about this. So that was a big thing, 0:16:46.396 --> 0:16:50.716 and I really felt not knowing was taking a huge 0:16:50.716 --> 0:16:53.596 amount of energy from me, and that if I knew 0:16:53.756 --> 0:16:57.516 one way or the other, that it would require rearrangement 0:16:57.796 --> 0:17:00.036 of the stuff in my head, but then we would 0:17:00.076 --> 0:17:03.716 reach a stable place where it wasn't a constant balancing 0:17:03.796 --> 0:17:06.436 act of weighing the fifty percent good and the fifty 0:17:06.476 --> 0:17:10.876 percent bad, and it wouldn't ambush me at surprising moments 0:17:11.276 --> 0:17:14.436 that Limbo it played games with me. I'm not a 0:17:14.476 --> 0:17:19.116 superstitious person, but I felt superstition trying to get in. Yeah, 0:17:19.156 --> 0:17:20.916 I could feel it, trying to seep through the crack, 0:17:21.076 --> 0:17:23.636 trying to look for signs and things like that. Yes, 0:17:23.676 --> 0:17:25.596 And I was like, this is not how I want 0:17:25.636 --> 0:17:28.996 to live. I don't want everything in this world to 0:17:29.036 --> 0:17:32.636 seem like some pointer at this fact that I could 0:17:32.636 --> 0:17:34.956 just choose to learn instead of guessing for the rest 0:17:34.956 --> 0:17:35.916 of my life. 0:17:36.956 --> 0:17:41.036 After the break, Sonia gets the test results. We'll be 0:17:41.076 --> 0:17:46.196 back in a moment with a slight change of plans. 0:17:52.236 --> 0:17:54.596 Sonya was twenty seven when she found out she was 0:17:54.636 --> 0:17:59.196 at risk for a fatal neurodegenerative disease, a disease that 0:17:59.276 --> 0:18:03.196 had killed her mom at fifty two. Doctors told Sonya 0:18:03.316 --> 0:18:05.516 there was a fifty to fifty chance she had inherited 0:18:05.556 --> 0:18:10.116 a mutation that causes the disease. At the time, Sonya 0:18:10.236 --> 0:18:12.876 was fresh out of law school and newly married to 0:18:12.916 --> 0:18:16.796 her husband Eric, and for her, living in Limbo was 0:18:16.876 --> 0:18:20.356 not an option, so she decided to get tested and 0:18:20.476 --> 0:18:23.996 find out if she had the mutation. If I had 0:18:24.036 --> 0:18:27.116 asked you at that moment in time. If this comes 0:18:27.156 --> 0:18:30.596 back yes, will it meaningfully change the way that you 0:18:31.276 --> 0:18:33.676 live your life moving forward? What would you have told me? 0:18:36.556 --> 0:18:39.476 You know, I had one clear vision for how it 0:18:39.516 --> 0:18:42.276 could change my life, which is that if it came 0:18:42.316 --> 0:18:47.156 back yes, I knew that Eric and I could try 0:18:47.476 --> 0:18:49.916 to jump through a bunch of fancy hoops to have 0:18:50.036 --> 0:18:53.596 kids who didn't inherit my mutation. And I think I 0:18:53.596 --> 0:18:56.996 would have said, if it comes back positive, we are 0:18:57.036 --> 0:19:00.956 going to try our darnedest to have healthy kids. What 0:19:01.036 --> 0:19:03.916 was it like to get the results. We're sitting in 0:19:03.956 --> 0:19:07.876 this procedure room where the test is going to be 0:19:07.956 --> 0:19:10.276 unveiled to me, and people are sort of coming and 0:19:10.316 --> 0:19:12.956 going and just doing their jobs as people do in 0:19:12.996 --> 0:19:15.956 that hospital environment. And a couple of people came by 0:19:15.996 --> 0:19:18.556 and they were laughing, and then they laughed, and I 0:19:18.596 --> 0:19:21.516 was like, Oh, if like someone was about to receive 0:19:21.636 --> 0:19:24.516 potentially the worst news of her life in this room, 0:19:24.676 --> 0:19:27.316 they wouldn't be laughing, which of course is not how 0:19:27.316 --> 0:19:31.356 it works. And then the doctor said to me, the 0:19:31.436 --> 0:19:34.236 same change that was found in your mother was found 0:19:34.276 --> 0:19:39.156 in you. And I had the same response to when 0:19:39.196 --> 0:19:40.636 my dad had told me I was at risk in 0:19:40.676 --> 0:19:44.076 the first place, I got very calm and I held 0:19:44.116 --> 0:19:47.796 on to Eric. It was mostly we just need more information. 0:19:48.836 --> 0:19:51.076 My mom's age of onset was fifty one, but it 0:19:51.116 --> 0:19:53.876 doesn't predict mine at all. It could basically happen any 0:19:53.916 --> 0:19:54.716 time in adulthood. 0:19:55.276 --> 0:19:55.716 Wow. 0:19:55.876 --> 0:19:59.396 I called my dad and he got on the next 0:19:59.436 --> 0:20:02.476 flight and came and spent the weekend with us. And 0:20:04.276 --> 0:20:08.236 my memory of that weekend is that we spent it 0:20:08.556 --> 0:20:13.436 sort of qietly doing normal things together, like everything hadn't 0:20:13.476 --> 0:20:15.236 sort of blown away in the wind when the test 0:20:15.236 --> 0:20:19.396 result was revealed. And I think for me, normalcy in 0:20:19.436 --> 0:20:22.796 those next few days came from holding on to the 0:20:22.836 --> 0:20:27.076 idea that nothing had acutely changed. My body hadn't changed, 0:20:27.476 --> 0:20:29.356 that information had always been there. 0:20:30.956 --> 0:20:34.356 What you said is so simple and yet so poignant 0:20:34.356 --> 0:20:39.236 and powerful, which is the recognition that while this is 0:20:39.276 --> 0:20:44.356 an earth shattering shift in one's psychology, the awareness that 0:20:44.436 --> 0:20:48.556 you are positive for this mutation, your body hadn't really 0:20:48.676 --> 0:20:51.916 changed in the minute before hearing the answer and the 0:20:51.916 --> 0:20:53.556 minute after hearing the answer. 0:20:54.356 --> 0:20:58.036 Yeah, definitely. And I remember thinking, even in those early days, 0:20:58.076 --> 0:21:03.316 like whatever the truth is, it always was, Yes, exactly, 0:21:03.556 --> 0:21:05.796 this is me. These are the terms on which I 0:21:05.876 --> 0:21:07.796 was born. This is the body that I get. 0:21:08.116 --> 0:21:10.476 But you had said something that was very interesting, which 0:21:10.516 --> 0:21:13.116 was Eric asking on the flight, how could they do 0:21:13.236 --> 0:21:16.756 this to us? And I don't know who they refers to, 0:21:17.316 --> 0:21:19.636 but was there any feeling of anger at the universe 0:21:19.956 --> 0:21:22.916 that was that this was the body you were born into. 0:21:23.876 --> 0:21:28.236 I didn't feel a great instinct to shake my fist 0:21:28.276 --> 0:21:32.716 at the universe about it, and it really surprised even me. 0:21:33.996 --> 0:21:38.156 Even in those early days, like I would say, two 0:21:38.276 --> 0:21:42.756 or three weeks after getting the test report, I was 0:21:42.996 --> 0:21:45.836 already in a much better place than when I was 0:21:45.836 --> 0:21:46.396 in the limbo. 0:21:47.076 --> 0:21:49.636 Tell me more about that, because it's not like there 0:21:49.636 --> 0:21:51.756 were a bunch of action steps you can take right 0:21:52.236 --> 0:21:55.396 for me anyway, in my brain, the reason why I 0:21:55.476 --> 0:21:59.596 value answers and definitiveness and certainty is when I feel 0:21:59.596 --> 0:22:03.116 I can act on that information. Yes, And so I 0:22:03.156 --> 0:22:05.316 am trying to figure out in just those early days 0:22:05.316 --> 0:22:09.076 and weeks where the source of comfort came from, given 0:22:09.196 --> 0:22:11.476 that there were no quote action items. 0:22:12.076 --> 0:22:17.156 Yeah, I think one source of comfort was just the 0:22:17.196 --> 0:22:20.236 amount of energy I got back from not having to 0:22:20.276 --> 0:22:26.396 manage the limbo. Got it and something that brought me comfort. 0:22:27.116 --> 0:22:28.716 It has taken me a long time to be able 0:22:28.716 --> 0:22:34.276 to articulate this. But the experience of my mom's death 0:22:34.516 --> 0:22:38.676 and her illness to me has sort of concentric circles 0:22:38.676 --> 0:22:44.516 around it. Where dying at fifty two is tragic, losing 0:22:44.556 --> 0:22:47.876 her young would have been tragic no matter what. And 0:22:48.116 --> 0:22:50.116 when I look back at all this now, I see 0:22:50.156 --> 0:22:53.396 like a primary tragedy of her dying young, and then 0:22:53.436 --> 0:22:58.196 a secondary tragedy of the ways in which it was 0:22:59.356 --> 0:23:04.636 prolonged and made more excruciating and more uncertain and more 0:23:05.876 --> 0:23:09.396 uncomfortable in every way. It brought me a certain amount 0:23:09.436 --> 0:23:12.436 of comfort to think this exact thing could happen to me. 0:23:12.956 --> 0:23:17.596 But we wouldn't be going in blind right, that secondary 0:23:17.636 --> 0:23:20.276 tragedy wouldn't have to happen. 0:23:20.396 --> 0:23:22.636 Yeah, you could end your life with dignity, You could 0:23:22.716 --> 0:23:25.156 choose things on your own terms. Right, it would be 0:23:25.196 --> 0:23:29.036 a completely different process. It's strange to say right that 0:23:29.036 --> 0:23:32.116 that was a source of comfort, but really it was. 0:23:36.156 --> 0:23:40.756 You made a remarkably unusual pivot, I mean, with you 0:23:40.836 --> 0:23:44.196 and your husband. And to set the scene for listeners, 0:23:44.236 --> 0:23:46.756 at the time, you were a recent law school graduate. 0:23:47.156 --> 0:23:53.196 Your husband was a transportation engineer, and yeah, then you 0:23:53.196 --> 0:23:57.476 guys had your next slight change of plans, do you 0:23:57.556 --> 0:24:01.516 mind just so you bring me on this world wind 0:24:01.556 --> 0:24:03.116 journey of what happened next. 0:24:03.916 --> 0:24:07.796 There was like a pivotal event, which is two weeks 0:24:07.916 --> 0:24:11.356 after I got my netic test report, a friend shows 0:24:11.436 --> 0:24:14.156 up with a thumb drive and he says, people are 0:24:14.156 --> 0:24:16.476 working on this, like, you guys need to take a 0:24:16.516 --> 0:24:21.076 look at these articles. Inwardly, my feeling was, hey, man, like, 0:24:21.156 --> 0:24:25.516 we're still grieving. That's not the page we're on. But 0:24:25.876 --> 0:24:29.196 he left the thumb drive at our house and it 0:24:29.236 --> 0:24:31.116 was only a few days later that we were curious 0:24:31.196 --> 0:24:35.676 enough to open it up, and just seeing that he 0:24:35.756 --> 0:24:37.676 had managed to put together it was probably eight or 0:24:37.716 --> 0:24:44.316 ten articles about drug development for preon disease changed things 0:24:44.356 --> 0:24:50.076 for me because my mom's experience it had really convinced 0:24:50.076 --> 0:24:53.756 me that no one knows anything about this, it is 0:24:53.916 --> 0:24:58.476 so rare. But I realized that behind the scenes, there 0:24:58.516 --> 0:25:03.236 were people who actually cared a lot about this specific 0:25:03.316 --> 0:25:07.196 rare disease and knew a lot and cared enough to 0:25:07.196 --> 0:25:08.276 try to develop drugs. 0:25:09.156 --> 0:25:10.276 And so what did that lead you to? 0:25:11.076 --> 0:25:13.556 About a month after getting my test report, ended up 0:25:13.596 --> 0:25:18.236 quitting my job, thinking I'm taking a step back, because 0:25:18.276 --> 0:25:20.676 I need to right now to sort of sort out 0:25:20.676 --> 0:25:24.796 this piece of my life. I need to spend some 0:25:24.956 --> 0:25:28.756 time building a vocabulary so that I can advocate for 0:25:28.796 --> 0:25:32.076 myself in this space. I would walk into classes at MIT, 0:25:32.356 --> 0:25:35.396 which like fortuitously was like down the street from our apartment, 0:25:35.956 --> 0:25:38.756