Finding Joy in a Life You Never Saw Coming | Jessica Slice

0:00So at age 28, Jessica Slice was living what looked like a dream life, co-owner of a successful real estate firm, traveling the world, super fit, utterly alive and in charge of life. And then in a moment, actually a single day in Greece, something went wrong and her life was forever changed. Jessica was plunged into the world of illness, disability, medical gaslighting, and eventually a complete transformation in how she viewed herself and what makes a life worth living. It would take years, but what she'd eventually come to learn was that different didn't by default mean worse. In fact, it could lead to something, to a life that was filled with equal amounts of grace in harmony with new challenges that to this day have never left her.

0:47Jessica is now a writer and disability advocate whose work has appeared in the New York Times, Time Magazine, other major publications, her new memoir, Unfit Parent, A Disabled Mother Challenges an Inaccessible World, explores her journey from driven overachiever to someone who has found unexpected freedom through accepting her disabilities and limitations. In this conversation, we explore how Jessica moved from feeling grief, even shame about her conditions, to fierce self-advocacy, and why including diverse bodies and minds makes every institution, every part of life, every relationship better.

1:24Perhaps more powerfully, she shares how embracing her limitations paradoxically led to a deeper, richer experience of life than constant striving ever did. So excited to share this conversation with you. I'm Jonathan Fields, and this is Good Life Project.

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2:20Jessica Slice: Good Life Project is sponsored by Nature Raised Farms. So if there's one thing I have learned after 14 years of deep conversations about living well, it's this. At some point, you get tired of overthinking things that shouldn't require a decision tree. And somehow, the chicken aisle just never got that memo. Too many labels, too many claims, too many things to squint at before you can just make dinner. That's the problem Nature Raised Farms set out to fix. It's no antibiotics ever, free from gluten, dairy, and soy, no seed oils, nothing artificial, good source of fiber. So whether it's a fast lunch between calls or a Sunday dinner with people you love, you're not trading taste for trust.

3:02Jessica Slice: Nature Ray's Farms believes chicken should meet a higher standard. Chicken that's just chicken. No trade-offs, no second guessing. Look for Nature Ray's Farms chicken in your freezer aisle and get back to simply enjoying dinner. This episode is brought to you by Choiceology, an original podcast from Charles Schwab, hosted by Katie Milkman, an award-winning behavioral scientist and author of the bestselling book, How to Change. Choiceology is a show about the psychology and economics behind our decisions. Hear true stories from Nobel laureates, authors, athletes, and everyday people about why we do the things we do.

3:39Jessica Slice: Listen to Choiceology at schwab.com slash podcast or wherever you listen. Your life has sort of like this before and after and tied to your late 20s. So tell me a little bit about life first. What was life before this moment that would change everything for you? Give me sort of like a paint the picture for me. Yeah. So at 28, when I became sick, I was the part owner of a real estate firm in North Carolina. And I was someone who did everything as much as possible or as well as possible. So I had originally started real estate in order to earn a little extra money to pay for graduate school. And then what I ended up doing was becoming co-owner of a company and one of the best realtors in the country and just became all in on real estate.

4:35And I was married to my high school sweetheart. I woke up went for a seven mile run worked a long day out to dinner with friends and then start again the next day So I was living a very active very motivated life when not working. I was traveling all over the world and A thing that was true about that time and I would have said it even then Is that I had this deep Deep sense That I wasn't there yet Like I felt this kind of like corrosive dissatisfaction. It almost felt physical, like I could vomit or weep from it. And I felt like the solution to that, to that dissatisfaction was if I could just figure out how to do things better, even if that was have more fun, better, just anything better.

5:25Right. I mean, you use the word there. I wasn't quote there yet. And I know a lot of people have a similar feeling, but they're probably going to define what there means and differently. What was that thing that was kind of like perpetually beyond your grasp? What did that actually look like? What were the qualities of that back at that moment? I thought a good life was there. A life that I would feel, I don't know that I was looking for happiness, but I was looking for this sense that like, okay, this is what I want. This is what life should be. I'm good enough or this is good enough. And I don't know if I would have been able to define it beyond that.

6:02I kind of knew it by its absence. I knew I wasn't experiencing what I wanted. I mean, that's so interesting. I think so many of us feel the same way, where we kind of know that there's something that is not a part of our life, a feeling that we want. And it's hard to define, but we just know that we're not feeling it. Yeah, yeah, yeah. And not doing it. Like I remember taking these trips that were sort of like larger than life trips, you know, taking a helicopter in St. Lucia and just feeling like, ugh, this isn't, why isn't this better? Why am I not appreciating this? Why isn't this what I thought it would be?

6:47And I kind of that feeling followed me around. And like, and that, you know, there's the Buddhism idea of the pain and then the judgment about the pain. I had this feeling of dissatisfaction and then blaming myself for not being satisfied, which with what was on paper, like a phenomenal life. Yeah. It's like the shame that we layer on top of it. It's like, oh, I should be like, I mean, come on, look at my life. I should be feeling so much better. I've checked all the boxes. I've done all the things. And yet like it's, and like how shameful that I actually feel this way, that I'm not so, you know, as grateful as I quote should be in this moment in life.

7:27Exactly. Exactly. So I'm in Boulder, Colorado right now, but I spent my entire adult life in New York City. And that is kind of like the dominant feeling in New York City. Yeah, definitely. That's like the ethos, the fiber of life. You know, it's sort of like, yeah. But you know, it's also not the type of thing that you complain to other people about. Because, you know, from the outside looking in, you've got it all. And yet, oftentimes we're suffering, even though the appearance is like we've done all the things. So this is your life. Objectively, from the outside looking in, it's incredible.

7:57but there's this yearning inside of you. There's this sort of like discontent that's perpetually there. Take me into what happens that changes everything. I was in Santorini, of course, on a whirlwind vacation and went on a hike. And it was the day before I had run my usual seven miles and had planned a five mile hike for that day in Santorini, which, you know, according to my standards was nothing. But I miscalculated the impact that the sun would have on me. And so about four miles into the hike, I started to experience heat-related illness. And as someone who grew up in North Carolina, I was familiar with the early signs of heat-related illness, you know, that I would start to get shaky or a little nauseated or clammy.

8:44And so, and then I also realized I was out of water and I thought, okay, well, I need to get to this next village at the end of the hike and get some food and water and rest and I'll recover. But about a mile from the end, a pack of wild dogs blocked the path and they bared their teeth and their hair stood up. And it was pretty obvious that we weren't going to get past the dogs. And the only option was to kind of scramble up this like thorn covered bank out of the way. And so did that and then went this big arc around the path and back onto the path, which added a lot of time to the hike. And so I was already experiencing heat-related illness and then that exacerbated it.

9:31Made it to the next village, tried to eat and started vomiting, went back to rest. And I just knew, okay, well, I'll rest and then I'll wake up tomorrow myself. You know, this was a hard day, but it would be a blip. But what happened is I woke up the next day and could barely make it to the bathroom without needing to sit on the ground. It was like this. I'd had one body. And then I saw the dogs. And then the next day, I was dizzy and nauseated and shaky. And if I tried to stand, my vision would start to black out around the edges. I went to a doctor and they diagnosed an electrolyte imbalance and so I thought okay well that's it that's it's electrolytes so I they gave me some sodium and potassium I took those my levels normalized but the symptom didn't go away so I went back to a doctor went back to the states and I didn't improve and I started to see doctors more regularly and I I think what's so remarkable looking back at that time is how I woke up every day just thinking I was about to get back to my normal life and trying to get back to my normal life you know put I would put on my running shoes and put on my running shorts and then I wouldn't be able to get out the door I would go to meet a client and then end up lying on the floor in their bathroom unable to to work and um but my health did not measure a measurably improve from the day after the hike until now.

11:06And I'm 42 now. So it's been about 14 years. So in those, I mean, when you're in the days and the weeks immediately after, when you're just in a window where you're just like, okay, so like, whatever is going on here, whatever needs to normalize, maybe it's a virus, maybe it's this, maybe it's that, like, I just need to kind of like wait it out. What were you physically feeling? Was it just this intense exhaustion? What was going on inside? God, I mean, my personality being what it was and is, I had this spreadsheet of all the symptoms. You know, I experienced nausea and dizziness, you know, fatigue, but different kinds of fatigue.

11:45You know, I learned that there's all these iterations of it. There's this fatigue that makes it feel like your eyes are shutting when you're trying to stay awake. But there's also fatigue that's like wearing one of those weighted vests that you wear at the dentist. You know, there's different versions of fatigue. And I had them all. And then all these bizarre symptoms, my legs would go numb or my arms would feel floppy or my face would go numb. Before too long, my skin went from its normal Irish pallor to kind of a yellow tint. The bones in my feet started to break. I mean, just really, it's like the longer it went, the more the symptoms added up.

12:28but I was in, I mean, I was just like, and as the symptoms increased, I guess I haven't stayed at that point. I've kind of stayed at the like post-treatment or pre-worsening point. But as they added up, I just became, you know, I was in a period of such intense discomfort every minute of the day. So when this is going on with you, and I would imagine like it's stopping you from doing all the things that you would normally do. Mm-hmm. And I'm imagining also like you're probably dialing doctor after doctor and trying to figure out what's going on, what's going on, what's going on. Yeah. What are people telling you in those early days?

13:09That I was just thinking too much about my body. Oof. So basically classic - Young woman who's sick. Yeah. Wow. Yeah. They kept saying, well, are you sure you're not just like paying too much attention? Maybe that's the way heads always feel or, you know, you'd be surprised what stress can do. You can be surprised what hyperfixation can do. It was just this like constant. And that went on for two years. So it's basically two years of gaslighting. Yeah. And I, by the end of it, I believed it. So, so at that point you're kind of thinking, well, this is, I'm causing this. I was positive. I was causing it.

13:51I mean gosh by that point I had lost so much weight because what I didn't realize is that I was having untreated severe tachycardia and so my body was just burning so much food by being alive that I was I was dropping a lot of weight and I was I had this feeling every night going to sleep at the end of two years that that I would vanish that like that I would either die or that like I would shrink so much that I would soon not exist anymore. I mean, it sounds just brutal. What's happening? Yeah. What's happening also, I mean, with your relationship, with your work? I had stopped working. I was earning like a slight bit from like company residuals, but I was no longer able to work.

14:44I applied for disability insurance and got denied. So I had no income, my relationship ended, a 14-year relationship ended. So the start of the two years, I had this like shiny, shiny life. And then two years in, I was living in a one-bedroom apartment doing almost nothing certain that I was about to die. So where do you go from there? I went to a psychiatrist and I told him what I had been experiencing. And I said, something must be so wrong with my brain that I don't even know it, but I am somehow causing this with my own brain. And I don't know how it's like even beyond my ability to recognize, but can you please help me?

15:34Can you please prescribe something that can make me stop doing this thing? Because I I feel like it's going to kill me. And it's like, there's so much kind of grace in this story is that he had gone through his own health crisis and kind of was just in a position to listen. And so he listened and he asked a lot of questions and he noticed that all the times I felt the very, very worst was when I was standing. He asked for, you know, over the last couple of weeks, when did you feel the sickest? And it was at the gas pump in the shower, waiting in line at the grocery store. And he said, I think you might have this condition, dysautonomia, which is a neurological condition impacting your heart.

16:18And I don't think psychotropic medication is going to help that. I think you need to see a cardiologist. And so he referred me to a cardiologist and I got diagnosed. When you heard that from him, what was the immediate reaction? I knew he was right. I, I, I mean, I Googled it and you know, it's not like too long ago that I couldn't just pull out my phone and Google it in the car after. And I was like, this is it. This is exactly it. Um, and I had of course seen many cardiologists, but, um, he referred me to someone he knew he put on the note what they should test for. And they tested me. And what the test involved was having me lean against this table, taking my vitals and then standing the table upright and then taking my vitals at one, five, 10, 15, 20, 30 minutes.

17:10And the diagnosis was evident, but it's wild to me that in the two years, all someone needed to do was take my vital signs while I stood up. I mean, it was a very low cost test and diagnosis. Yeah. This, this wasn't like a massive scan or complex. It was, I mean, you must've been thinking to yourself at that point, like why, like why the last two years didn't have to happen. Uh, you know, I, I blamed myself. I was sure that I had done something like I hadn't described my symptoms well, or that somehow I had caused this, you know? I mean, When you are told, gosh, I also have to say that I've done so many interviews for this book, and this is the first time I felt emotional in one.

17:57But when you are told that this thing that is agonizing is fake and that you're causing it, like, I felt hearing that just so disoriented. Like, I couldn't trust myself. I couldn't trust my descriptions. And so when I did end up getting diagnosed, it was a relief, of course, but I didn't feel angry. I thought, well, I must have done something wrong to be here. And we'll be right back after a word from our sponsors.

18:29Jessica Slice: Good Life Project is sponsored by Vinted. So a few weeks ago, I was going through my closet and kind of realized how much was in there that I hadn't touched in, honestly, years. Just stuff that I kept telling myself I'd get back to. And I had this moment where I thought, this isn't just clutter. It's a chapter I'm not really in anymore. And I would guess a lot of you know what I'm feeling. That's exactly the situation Vinted is built for. So Vinted is a secondhand marketplace app. Instead of letting the clothes you've outgrown just kind of sit there, you list them and give them a second life with somebody else.

19:04Jessica Slice: It's genuinely easy. A few photos, a quick description, and it's live. Once something sells, Vinted generates the prepaid shipping label for you. And here's another part that's really worth knowing. There are no seller fees on Vinted. Whatever your item sells for, that's what lands in your pocket. So if your closet's telling a story you've already outgrown, Vinted's worth a look. The app is free to download. There are no seller fees, so you keep every dollar you earn. That's Vinted. Good Life Project is sponsored by Bombas. So not just my entire family, but actually our entire Good Life Project team has been Bombas fans for I think about a decade at this point.

19:40Jessica Slice: And Lindsay, our executive producer, the person who keeps this whole operation from falling apart, just got a pair of Bombas women's nest slippers and she will not stop talking about them. It's the classic backless house slipper, but re-engineered. Four layers of actual structure support, memory foam, gel cushioning, a double layer of EVA underneath. It's lined with a soft terry that somehow works in every season and it's got a rubber outsole So you're not sliding across the kitchen floor at six in the morning Easy on easy off her exact words were easily the best slipper I have ever owned year-round That's kind of the whole bombest thing comfort that's actually engineered not just marketed that way Same goes for the compression socks if you're someone who really is on your feet all day or logging a lot of travel miles And here's another part that I really genuinely love for every single item you buy Bombas donates an essential clothing item to someone facing housing insecurity.

20:31Jessica Slice: One purchase, one donated. Over 200 million donations and counting. It's a good product attached to a good idea. So head over to bombas.com slash goodlife and use the code goodlife for 20 % off your first purchase. That's B-O-M-B-A-S dot com slash goodlife. Code goodlife at checkout. Goodlife Project is sponsored by Wayfair. So you know, I have been slowly making changes in our studio here, sort of the home office slash studio, trying to make it feel good to sit in for hours, not just functional. So I found this coffee table with storage on Wayfair. Two-tier layout, open lower shelf for books and notes instead of just letting them pile up.

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21:47Jessica Slice: Transform your space with pieces that hold up to real life. Join Wayfair Rewards today and get 5 % back on every purchase. Head to Wayfair.com or shop the Wayfair app for all things home. That's W-A-Y-F-A-I-R.com. Wayfair, every style, every home. So at that point, you have a diagnosis. So I'm guessing like the next thing pops into your mind, it's like, okay, finally, like we've got this thing. Like we can point our finger at something. Now, give me the pill, give me the procedure. Like what's the thing? okay, let's just cure it. Let's get through it. Now we know what it is. Let's fix it and move on.

22:26Exactly. Well, and as I mean, judging by what I've disclosed of my personality, you won't be surprised to know I went into treatments like whole hog and I took the medicine they gave me and they told me there was an exercise program that I could do that had a 50 % chance of complete remission. And it had to be done at a cardiac rehab facility because I was in such bad shape. I couldn't do it on my own. And when I say exercise, like I need to be clear that the first day was 15 seconds of low intensity reclined, uh, like stationary biking for 15 seconds. So it's, you know, a very specific kind of exercise program, but I did it.

23:10I did it for over a year. It took every bit of energy I had. I was either doing that. I was either at this cardiac rehab facility or home recovering. I couldn't drive myself. And I was single and I had to develop this calendar of people who would take me there and back and um and every single appointment was so scary and brought on so many symptoms you know i was often like on the floor of this facility and i and it was such a wild experience because everyone else there was heart attack or lung transplant patients recovering and i was by all appearances the sickest one in the room i mean no one else was on the ground they were all doing these laps around me and you know i'm sure at some point they had been much sicker but it was it was such a shift in my identity having been a runner two years prior so i did the year and as the year was winding up my sister became sick with the same illness um so i finished the program and the thing that happened was that i was not healthier so it didn't work and then my sister got sick as i said and we went to a geneticist our shared cardiologist said well it's you know obviously suspicious that two people have developed this in the same family we went to a geneticist and we were diagnosed with ehler stanley syndrome which can cause dysautonomia.

24:55And in people with Ehlers-Danlos, the chance of remission is almost zero. So the exercise was never gonna work. Right. So now you have this secondary diagnosis, which on the one hand, so it gives you something new to point to. It also helps explain why the last year really didn't help. Yeah. And now you're a year down the road. Now you have two diagnoses. okay, so now I can point to two things. The question remains, where do I go from here? What's next? Yeah. Well, EDS was interesting because I had had pain my entire life, my back and my shoulders and my hips. And I just thought that's how every other person felt in their body and no one else complained about it.

25:44And looking back at so many points in my life, I was like, oh, oh, of course. I remember spring break in college, we booked a house and all I cared about was the quality of the mattresses in Daytona Beach, Florida. I only thought about pain at every turn. And that's not a 21-year-old thought generally. And so it also, that made me feel a little validated. But the biggest reaction was like, okay, so now I know that this is my entire life. I will, for the rest of my life, be unable to stand for more than 30 seconds, be able to sit up right for, I won't be able to sit up right for more than about five minutes.

26:29I will be living in this new kind of body for the rest of my life. And it was just incredibly difficult. It felt almost impossible.

26:43you write actually um my acceptance and identity as disabled brought tremendous freedom i stopped trying to shoehorn my body into the world and started to adapt my world to my body um that word disabled is a word that a lot of people struggle with people who feel able body but also people who feel disabled talk to me about your early relationship with the word with the identity? So, you know, in those first couple of years, I just called myself sick after the EDS diagnosis. I, and I was just trying to get used to being a sick person. And I, you know, I had a disabled placard on my car. I eventually started to get disability insurance.

27:25So the word disability was in my life, but I thought it was sort of an incidental term. I didn't really think about what it meant, but I did start to contend with my illness. Um, And there were a couple poems that really meant a lot to me at the time. There's a Galway Kinnall poem that says, whatever what is, is, is what I want, but that only that. And I just said that to myself all the time. Like, okay, whatever what is, is, is what I want. Like, may it be true that whatever what is is is what I want. Like, I just kind of, like, tried so hard to want what was true. And then a Mary Oliver poem where she says there are many ways to perish or to flourish.

28:11And again, I was trying to convince myself, like, maybe this can be a way to flourish, even though it's nothing like what I imagined. And then I started to write myself a sentence that I came up with, which was, this too is a day of my life. Like I had had all these other days and I didn't mean the day had to be good or special or remarkable, but just that it was. It was a day of my life. It didn't not count because I was in pain or it didn't not count because I was dizzy or on the couch all day. It was a day. And so from there, I started to build a life. I moved to California where the temperature was easier for me.

28:48I started dating. I applied to graduate school for social work, which is what I had hoped to do when I started real estate. And it was there that I started to read disability scholars. and that was that moment that you just talked about where suddenly like I I no longer was in a body that was deficient from a well body I was in a body that was part of this community of people and as I started to read disability scholars I was like oh these are some of the most creative and brilliant and kind and interesting and world changing people that I have ever come across. And if like becoming sick is actually becoming disabled and becoming disabled means I'm part of this community, then like, oh my God, I'm so lucky.

29:40That's a huge reframe. I know you use the phrase disability gain and it's to view that as saying, okay, so now I'm part of this incredible community. I wonder if part of like what you were feeling before was this notion of, okay, so like there's this world of people out here that I like was a part of, you know, like for the first 28 or so years of my life. And that's the world of people who are living their best lives. And now I'm excluded from that. And I'm not a part of a community that has like some sort of path to also living a best life. And so like actually seeing, okay, there is this alternate community here.

30:21It's not just me. There's a place where I can belong and thrive and flourish and feel connected and see beauty and grace and all these things again differently. Exactly. And that they've been doing it, that I wasn't, I didn't need to invent something new that I was joining into this culture. And it was a culture that I legitimately liked and respected. I didn't have to, I didn't have to bright side it. And I, yeah, that moment was such a moment of, I mean, that kind of extended moment, semester-long moment, but it was such a profound transformation for me. Meanwhile, you're effectively making all these decisions to rebuild life anew, but rebuild a very different looking life.

31:08Because in case you discover this great thing, and you're part of a new community, and you discovered disability scholars, and yet your body is still your body. You know, it gives and takes what it has. So you're in a mode where you have to sort of like say, okay, how do I reimagine the way that I live, my built environment, my relationships, all these different things. Like this is still the work that's laid at your feet on a daily basis. Right. I mean, that's what, this kind of touches on something I think a lot about which is that my acceptance of disability and my love for disability culture does not negate like the suffering that's part of every day of my life but there's also something else there which is that there was suffering in part of every day of my life before too and that suffering was going to kill me like that suffering felt corrosive in a way that the suffering doesn't now.

32:11And I think about this so much, like what is the difference? You know, why? And I don't know, is it just expectation? You know, I play around with it. Like part of it is I kind of just don't think my days are supposed to be that good. I think days are like days are days and there will be hard parts and there will be good parts and no one thing will be all the way good. No one thing will be perfect. I said to my eldest child the other day, I said, you know, it can be useful to tell yourself bad things will happen today that I will not like. And my husband was like, well, it's kind of dark. I was like, I don't know.

32:51I think there's some freedom there too, that there is suffering and there is good. And that's the way it is. yeah i mean it's interesting right because the so much of the suffering that you had described you know in quote before times it seemed like came from you holding this ideal of what life quote should be and and never being able to like attaining all of these incredible things you know and and still just never being able to check that final box of like oh i finally feel the way that I want to feel. And now there's this shift in, well, what if the aspiration, what if the metric by which I was measuring everything was actually never attainable on that?

33:36No matter what the state of my body or my wellbeing is, and that alone was causing so much suffering, what if I change that now? And I still have to deal with whatever my body gives me on a daily basis. But now maybe I'm not layering on the psychological complication of perpetually falling short of my expectations. Well, that's exactly it. There's the falling short of expectations. There's the, this isn't what life should be. And then also, I have caused this to not be good enough. And the combination of the two of them is what destroys you. And the, I don't know, suffering is obviously hard. I mean, by definition, it's miserable.

34:21But it's not the worst kind of suffering is the kind of first level suffering. I don't think, at least in my experience of like existing in a fairly painful physical body. So you mentioned your oldest. At some point, you do start to rebuild life differently and enter into relationship and you meet a moment where you start to think about kids. And from what I know, and tell me if I'm getting this right, earlier in life, kids weren't something that you necessarily thought would be a part of your life. No, no. I always said I didn't want kids, but the truth was I was positive that I would destroy a child.

35:08That I knew, and this was before becoming sick, but I knew how I talked to myself. I knew how I treated myself. I knew what my expectations were. And I had the presence of mind to be like, I cannot put this on another person. I can't do this to someone else. And so I, I don't know. And, you know, out with friends, I would say, oh, I don't want them to cramp my style. I want to travel the world. But the truth was, I didn't want to destroy a child.

35:38So a couple of years down the road, when a lot of things have profoundly changed for you, what changes i mean the thing that's wild is when i it was really even before the disability identity that shifted my my relationship to my pain and to my illness but during the time that i was sort of reckoning with my days like when i was reading those poems and kind of repeating that this too was a day of my life, I had just started to like myself during that time. And it was kind of like miraculous to experience, but I like who I am now. I trust myself. I think I'm good. I think I'm kind. I think I'm loving.

36:26And I think I'm able to learn and to care. And I just totally shifted how I thought about what I could offer to a child. And after liking myself, it made me want a child because I was able to access my own desires once I stopped being afraid of what I would do to a kid. I mean, so powerful. So it was this real internal shift that gradually unfolded based on just your capacity to make peace with yourself, to fall back in love with yourself. Yeah. And open up the space to say, well, like maybe there is room to feel similarly for another. I have friends now that I've been friends with, you know, since middle school or elementary school.

37:22And one of them, Casey, describes that time as like Jessica 1.0, shifting to Jessica 2.0, which is funny because 2.0 is generally like a more optimized version. And in almost every way, I'm like a much less optimized version. Like don't exercise, almost always in bed, very poor eater, you know, but, but in also some like deeper ways, I am a totally different version of myself. And we'll be right back after a word from our sponsors.

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40:59Jessica Slice: Hostinger builds your vision step by step. Create your website today. Go to hostinger.com slash goodlife and use the code goodlife for 10 % off now. So when you start to actually say there's space in my heart for a child and I would like to have a child in my life, I mean, it's a different decision now also. And, you know, you write powerfully about there are a lot of considerations and there are also, there are a lot of things that potentially get layered onto you and that decision from the outside. Mm-hmm. Mm-hmm. I thought about the decision carefully, but I also knew that I had a very good partner and my now husband, David, and we had the financial capacity to pay for child care help if we needed it.

41:51But also that initial decision to have a kid, I wasn't committing to a kid forever. I convinced David, which is like, I'm a little bit of a moral absolutist, which is not a great quality. And I became absolutely convinced that it was immoral of us to have a two-bedroom house in Oakland and not allow someone to live in the second bedroom. I just was like, we cannot do this. Housing is, you know, there's a housing scarcity. There's kids who need a place to live. We must, we must do this. And he was eventually persuaded and we met with this refugee organization and we were for a while going to host teenagers from Eritrea and then made our way to the foster system.

42:39We were licensed from ages zero through 12. So actually that initial decision to have a kid was a decision that I wanted a child, but I didn't need for it to be permanent. I didn't need for it to be a newborn. It was like this kind of combination of care I had to give plus space in the house. And as the old saying goes, like we make plans, God laughs. Yeah. Yeah. And everyone told us you won't get a call about a baby because everyone wants to foster babies. Like that's almost certainly not going to happen. And that, and so of course it happens. Yeah. Our second call was about a newborn and they said she needed a place for a few weeks or a month and asked if we could pick her up from the hospital the next morning.

43:29So we got a call around 9 PM and at 9 AM the next day, David went to work. because we thought this was very temporary. We thought it was almost babysitting. I went to the hospital and I met the child who is now our eight-year-old daughter. What's that moment like?

43:51There's this photo of me sitting. I didn't have my wheelchair with me and I can only walk for about 30 seconds. So I made it inside, sat on the ground, walked a little bit more, sat in the elevator and there's a photo of me sitting on the floor in the elevator. And I have this like completely shell-shocked face. Like, I guess I'm about to, I guess I'm about to get a baby. Um, and she was eight days old and I went in and I had to wash my hands for three minutes up to my elbows and went in and met her and God, she was just magic. Like I, um, the nurses said it and I felt it immediately. There was something so alive about her in the bassinet.

44:39And, um, she had had a very hard start, which is her story to share if she ever wants to. Um, but there was just something so eager for life. And they, they talked to me for a while and then they had me see if I could feed her a bottle and change a diaper. And, um, when I gave her the bottle, the hospital bottle. I put the little nipple in her mouth and she wouldn't take it. And then I, she opened her mouth like more. And so I put the whole entire thing in her mouth. So like her lips were all the way up to the plastic part. And then she just drank the whole thing. And, um, and that's kind of her personality.

45:17Just like, give it, give it all to me. Just drink in life. Yeah. Yeah. When you're there, sort of like saying, is this really happening, I guess? And then the nurses are there and they're taking care of you and watching and sort of like saying, like, try this, try this. Like, let's make sure. Did you, what was the energy you were getting from them, from the people around you? Like, because making sure that, like, they're like, I want to make sure that this person who's coming can care for this kid. Was there any, did you feel any judgment or was it all pretty open? It was open. It was, getting my license was very difficult.

45:59We, I mean, encountered a few obstacles. The classes were not accessible and they were in a hot environment I couldn't tolerate. And we were told, well, if you can't do this, maybe you shouldn't be a parent. The licensing was difficult, but the nurses, gosh, that time just feels so shiny in my mind. But they felt, yeah, I mean, gosh, I'm emotional thinking about this too, but I loved her so immediately. And I think they saw that. I felt very supported in the hospital. I remember one of them said, you're very funny. You're going to make a great mom. And I thought, I don't know that that's like necessary, but thanks.

46:45Yeah, I mean, they were surprised. they asked where her going home outfit was and i was like i don't have any outfits actually and so they went to the lost and found and there was this like massive onesie that she was drowning in and then they asked where my stroller was i said we actually don't own a stroller and we did have a car seat obviously for legal i mean for legal reasons but um so they put her in this like funny little stroller thing and wheeled her out and we pulled out of the hospital and I stopped at the first light and I still remember speaking to her and I said, okay, I love you and I'm going to try my very best.

47:26When did you start to feel like, okay, this isn't fostering anymore?

47:35It sounds like it was a matter of seconds. No, I knew I loved her, but I thought she would only be there a few weeks, but I knew I would love her all the way for those few weeks. I think it took a month or so to really know. You know, there were family members of hers we thought she might be able to be with long term, and I was very open to that. I really believed and still believe that family reunification is ideal.

48:08and I don't know if it's disability or illness, but I felt like I could love her a hundred. Like I felt like I could love her all the way and want her to be back with her family. Like I felt like I could want one of those, both of those things at the same time. So when you bring her home, she becomes a part of your life and eventually becomes your daughter. Now you're, you know, like you're raising a child, living with a disability. And the world, as you discover, isn't so set up for that. No. No. I mean, the first six months were this little bubble of heaven. I just, you know, my days of doing almost nothing really worked well with her days of being a newborn.

49:02She was a baby, and I know not all babies are this way, but she really never cried if we were touching. If we weren't touching, she did cry. But I'm very good at sitting around all day. And so she just was next to me or on me or sleeping, you know, sleeping against my leg or under my arm or on my chest. And we spent almost six full months like that. And then after that started to go into the world. And that's when I encountered that, like the limitations of my body didn't, you know, work as well with being in the world with her. I, at that point, got a wheelchair, like a power wheelchair so that I could go more places with her, which really opened up my world.

49:47But then I started to learn how few places are accessible. We started to take trips and encountered, you know, issues. Like at one airport, I was told I wasn't allowed to carry her on my lap on my wheelchair. You know, it's like once we left that that bubble, I started to really have to confront what it means to be a disabled parent in the world and not just in my house. I mean, what, what does that start to look like? Because confronting it is like one thing saying like, okay, so this is the reality here. But you also have to navigate it. Like you have to live in this world, in a world that is not equipped or built or resourced often to support you.

50:34And I mean, clearly I think probably most people are getting, there's a fierceness inside of you and there's a loving side of you, but like there's clearly a fierceness inside of you. And it sounds like you turned some of that to, okay, let me really understand this. And let me also understand not just what's happening to me, but like what's the bigger picture here yeah i mean thanks for saying that i i did i

51:11i also as she got older it started to be clear that um and i write about this some but that she's autistic and that she had her own needs and that she was living you know as a disabled person too and so I think there was like this sense of I'm going to like I am going to live as if the problem is not us as if the problem is like the world's refusal to include us or accommodate us or value us and I um I think as her needs started to emerge it was like okay well if I can't be proud of and insistent on the the value and the importance of my own limitations like what will that say to her about her limitations so I think I also just started to like really work to model someone who is okay with the body and the life that they've been given yeah or not ashamed of it right and and it seems like but it's it's also beyond that like somebody who is a strong advocate for what you need and I probably, I would imagine, would argue, are entitled to as you move out into a world that often isn't built to support you.

52:36Yeah. Yeah, it's true. I mean, I'm having trouble thinking outside of today. I got a call from someone at school today that there was an issue and I could tell that they were not being respectful. I could tell that the person in charge wasn't being respectful. And I felt, like you said fears, but I felt that part of me that says like, no, this is not acceptable. This is not how we will be treated. And this is not what my kid deserves. And I just feel so certain about how she deserves to be treated and accommodated and respected and absolutely adored for who she is in this world. And that also, I guess this is the big, this is like what I haven't even really touched on is that the world is better with her in it.

53:38Like it's not only that she deserves this like a nature of being a person or her own dignity or that all people deserve this. But that if she is not in environments, the environment is worse off. Like her joy and her knowledge of animals and the way she sings and the way she cares about other people's feelings and her jokes and all that, she makes things better. And so it's not only that she deserves it, but that other people deserve to have her there too. And I'm committed to insisting on it. And I'm committed to insisting on it for myself too, that I think I make environments better, even with all my needs and limitations and requirements and exhaustion.

54:24And I think people are better off for having me around. Did you come to that feeling about yourself after you came to that feeling about her? Good question. I think in conjunction. Yeah. I mean, it's big. It's a very different thing than saying like, I'm entitled to what, quote, like others would have available to support them and say like, no, like, it's not just you needing to dig in and figure out how to support me, but like, I make this world, I make this day, I make this life, I make this moment better by being here. and can we can we acknowledge that too i mean it's that is a hard thing for any person in anybody to show up and own and that i don't need to do things perfectly or ideally or i mean it goes kind of back to this old version of life that i thought the the good enoughness was like right around the corner.

55:30And that wasn't true then. And it's not true now. It just is. But it also plays out practically. It's not just conceptually. So the medical field, there are very few physically disabled doctors. I mean, the stats are kind of tricky on this, but it's estimated to be less than 2%. 25 % of people are physically disabled. Medical school residencies should all be more accessible, not only because disabled people deserve to be doctors, but oh my God, can you imagine how medicine would change if disabled people were practicing medicine? Like, can you imagine what would have happened when I started seeing doctors with those symptoms when I was 28, if there were people with fragile bodies in those roles and people who had experienced like a loss of health, making those decisions, doing the research, listening to patients.

56:24Like it, it isn't only that they deserve to be there. It's like this very practical thing that systems are better when there's a variety of bodies and minds involved. Yeah. I mean, that makes so much sense. And you write, you've done a substantial amount of research to sort of like show that within the medical system, the healthcare system, at least in the US, disabled people, people living with disability are often treated very differently. Oh my gosh, that's wild. And somebody who would show up with nearly identical, you know, like quote, uh, symptoms. Take me into this a little bit. So there's a doctor at Harvard, Lisa Izzoni, and she has studied, uh, disabled people.

57:05Well, she studied a variety of things, but one of her, you know, research subjects is disabled people in cancer. And she's found disabled people are so much less likely to be tested for cancer and treated for cancer because doctors say there's like a reduced, you know, or a questionable value of having us treated? Like what's the point of saving this diminished life, which I guess it's clear at this point, like I disagree with foundationally. And it's so flawed for a few reasons. One, disabled people are actually very good at cancer treatment because we're so used to fragility and we're so used to complication that when we're treated for cancer, our outcomes are fantastic and we're able to ride those waves of treatment.

57:47Two, disabled people actually like our lives at far higher rates than anyone would think and at equal to rates as non-disabled people. So it's this philosophical phenomenon called the disability paradox. And so anyway, all that to say, there's this assumption in medicine that being disabled is just as bad as dying and the lived experience of disabled people does not reflect that. And you have to think that part of that is because doctors aren't disabled. I mean, it's interesting also, right? Because if you look at, there's a classic U-curve of happiness data that shows that early in your life, you're at the top of the, like, you're really happy when you're in your teens and maybe early 20s.

58:38And then it just kind of like drops down in the middle. And then later in life, it comes back up when you're in your 60s often and 70s. And simultaneously, that's also the season that probably the greatest percentage of a population is living with some form of disability. And yet it's reported as being most satisfying, most fulfilled. Life is often best then. So it's like the assumption just doesn't hold by any data, by any measure. Oh my gosh, that's such a good point. and one I've never considered. But of course, I mean, what 70-year-old doesn't have some pain or some impairment or maybe a couple, but you're right.

59:20But that's when people are happiness. So if we are judging life, there's the question of, do we judge the value of a life based on how satisfied someone is with a life, which I think is a question you think a lot about. But if we're judging it on satisfaction, then that doesn't hold weight. And so then what are we judging it on? What are we, you know, what's the, what's the metric? Yeah. I mean, it's something that I think about a lot. I've talked to so many people about it over the years is, you know, like, can you live a good life if you're ill, if you're in pain, if you are like mired in grief or loss, like can, is this experience of a good life still available to you?

59:57And the answer is yes. You know, it, it may, you may have to step into it differently, you know, and the way that you think about and the things that you sort of like measure that life by become different, sure. But oftentimes they're more real measures than you had before, you know, and it is equally accessible. And often also, you know, you appreciate moments and things that become available to you more readily. At least that's been my experience as I sort of like move into later years of my life too. Yeah. It's funny. I forgot about that U-curve, But as a 42-year-old with two young kids, I'm at peak dissatisfaction, I think, statistically right now.

1:00:42This is like when it's the worst. It's like you're pretty good, actually.

1:00:45Jessica Slice: Can you imagine how awesome it's going to be when you're 70? Oh, my gosh. I think I'm really going to thrive as a 70-year-old. But I'm really cut out for that. I, I, and I think it's this sense, it's this feeling that life should be a certain amount of good and that we should be able to get it there. It's like this individualism or the, like, this kind of, this idea that, like, our pure willpower can get us what we want. And I think that, like, destroys us in so many ways. And that's not to say that it's not important to feel powerful. Like I certainly feel powerful as a person, but you have to like hold that with how little we control.

1:01:28I mean, we just control the tiniest bit ultimately, you know? Yeah. But I mean, this goes back to like what you were mentioning in the beginning of our conversation, this like Buddhist notion of suffering. suffering. And when I first started dropping into Buddhism and I heard this phrase, like, life is suffering. And I'm like, no, because she completely rejected it. I'm like, no. And then, you know, but I've, my more new, and maybe this is just the overlay that I want to have on it. But my sort of like nuance take on that is that we are hardwired to want to grasp at everything, control everything, and lock down, make life as certain as humanly possible.

1:02:12And because that very thing is impossible, like the only thing I'm certain of is that certainty is impossible and will be for life, that causes suffering. So if we let go of the grasp of the need for everything to be known all the time, it makes sense that there would be a certain amount of suffering that goes with that, that gets let go, like let go enough, like that's not proper English, but that we free ourselves from when we just say, okay, so you're like, there's some stuff I can control. There's a whole lot that I can control. And what if, you know, as the monk said in the final episode of White Lotus this season, there is no resolution.

1:02:59no no there is yeah there isn't we're never going to make it there we're never going to finish the thing we're striving for and i mean we haven't talked about this specifically but but don't you feel like so much of this is about death too i mean that's ultimately what it is right that we we want to avoid suffering and we're striving, but also we're just, we just want to do everything we can to convince ourselves that this isn't going to end. I think that has been true for me, at least. I think it's true for most people. You write in the book, disabled people spend their lives claiming their power and independence while working to accept life's transience.

1:03:47Yeah. And yeah, I mean, I think so much of what we do on a day-to-day basis is in the name of a subconscious quest for immortality. yes i think that's so much of it and i also think it's our fear of disability and why we're so resistant to inclusion and to looking straight at disability to looking at fragility because i think i can be such a like the reality of my life the vision of me in a wheelchair of all my needs i'm just like this oh my god i'm gonna die like people just are like i don't want to look at that because then what else am I seeing? And that all bodies fail, that all bodies are fragile, that we all will have pain, that we all will die.

1:04:33And I think there's something in the complete illogic of

1:04:42driving for a good life while, but then you have to have the second part, but that you know it's impossible you know you will die and you know it's all meaningless like or fruitless or doomed and i think that's like where like or at least where i encounter magic and this like the like rage against the dying of the light this like i will do everything i can for a completely a failing mission that feels like a good place for us to come full circle as well So in this container of a good life project, I always wrap with the same question. If I offer up the phrase to live a good life, what comes up?

1:05:28Telling the truth about what you're experiencing and what you're capable of, which is probably not very much. Thank you. Hey, before you leave, if you love this episode, Safe Bet, you'll also love the conversation we had with Rebecca Tosig about living creatively and resiliently with physical disability. You can find a link to that episode in the show notes.

1:05:52Jessica Slice: This episode of Good Life Project was produced by executive producers Lindsay Fox and me, Jonathan Fields. Editing help by Alejandro Ramirez and Troy Young. Christopher Carter crafted our theme music. And of course, if you haven't already done so, please go ahead and follow Good Life Project in your favorite listening app or on YouTube too. If you found this conversation interesting or valuable and inspiring, sharing, chances are you did because you're still listening here. Do me a personal favor, a seven-second favor. Share it with just one person. I mean, if you want to share it with more, that's awesome too, but just one person even.

1:06:25Jessica Slice: Then invite them to talk with you about what you've both discovered, to reconnect and explore ideas that really matter, because that's how we all come alive together. Until next time, I'm Jonathan Fields, signing off for Good Life Project.

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