Episodes
EP004 → Alex Wilding on Caregiving, Minor-Major Characters in Your Story & Two Cancer Diagnoses in One Family
In this episode, Nora talks to Alexa Wilding, a writer, musician, and mother of two whose cancer and caregiving experience has both built community and informed her creative life. We talk about what it’s like to be a caregiver and mother of twins, dubbed on her Instagram #twinmagic, her own breast cancer experience, her writing practice and what it means to reframe resilience.
We talk about the book Between Two Kingdoms by Suleika Jaouad, the writer Kate Bowler and US Poet Laureate Joy Harjo.
Nora Logan: 0:01
This is So, Life Wants You Dead, a show that explores the intersection of illness, disability, healing and creativity. Seven years ago, I was told I would need an emergency organ transplant. Before they put me under, I close my eyes and imagine myself writing. Now all these years later, I can say, that was honestly what saved me. Well, I have a brand new liver. I'm Nora Logan, and this is a podcast on how looking at that helps you live. Today, my guest is Alexa Wilding, a published writer and musician and mum of two whose experience with cancer and caregiving has both built community and informed her creative life. As you'll hear on this episode, Alexa and I have a personal connection. We went to the same school as teenagers but she was a little bit older, so I only knew of her as my friend Sonny's cool older sister. She was already out in the world being a musician, doing her thing artistically. She was this real beacon of light, there was someone I knew, even tangentially doing it. She has remained that for me with her writing over the years. And it was such an exciting experience for me and boon to my teenage inner child to get to speak to Alexa. Now, some 20 years later, we talked about what it's like to be a caregiver, own experience of breast cancer, what it's like to write about all of it, and how to reframe resilience. Here's the conversation. Hello, and welcome to so life wants you dead. Thank you so much for being here today. Alexa, it's so good to see you and to have you here.
Unknown: 1:51
Thank you so much for having me.
Nora Logan: 1:53
How are you doing today?
Unknown: 1:55
Oh, you know, juggling a lot of things, per usual. I don't really know the answer to that question anymore. I think for all of us, it's like, if you actually say how you are you definitely lose friends and alienate people. Yeah, it's
Nora Logan: 2:11
sort of like saying the standard Good, how are you doing doesn't really cut the mustard.
Unknown: 2:17
It just doesn't anymore it does.
Nora Logan: 2:21
So before we get into it, I want to say that we have recorded this episode once before, together, you made the schlep down from Hudson, New York, where you live to record with me in Brooklyn, which is where I currently am. And we had this fantastic one hour and 36 minute conversation in which none of the sound recorded and for which I have already apologized profusely, although now I'm doing on air. And I'm just so grateful that you have so graciously agreed to do it again, and thank you for for being here. And part of what we recorded in that episode, which is, is now with the angels and the spirits and whoever else that that unrecorded episodes go to die. We touched on quite a few times this idea of kind of do overs and second chances. And in a way, if I'm going to look at it in a poetic way, which I'm prone to do, is it's testament to that, right? Like what we talked about in this first episode of having the opportunity to do things again, and also to be able to have ongoing conversations with the people in our lives and, and the people we reach out to for support.
Unknown: 3:37
Yeah, and also the resilience to show up again, is a great metaphor. You know, when when life was dead, it's really, it can be hard to show up again, what if I'm gonna get pie to the face again. But I think after a few pies to the face, you just realize, you just gotta show up, you're gonna get paid eventually. So risk at risk the pie,
Nora Logan: 4:01
yes, pie to the face over and over. That's just how it goes. And that's what we're both doing here. Anyway. So in that first episode, I also at the very beginning, touched on how I was a good friend of your sister Sonny, and I had also met your grandmother, your Beloved Baba, and kind of invoked her name. And I would love for you to just speak a little bit about your Baba and and also invoke her again, because I feel that she was such a brilliant woman, and she's so worth kind of having a little bit of her spirit in the conversation with us today. So would you just talk a little bit about about Baba and also how she informed the woman that you are today?
Unknown: 4:52
Sure, it's my pleasure. I invoke her spirit daily. So Bob as my mother's My mother's mother, and she was a watercolor painter. And the most positive person I've ever met in my life. And when I say positive, though she wasn't, you know, gaslighting or avoidant, she just woke up every day no matter what very excited to see what was going to happen. And so I grew up hearing things like, always look your best you never know who you might run into, or I wonder what's going to happen today. And she had a difficult life. She was a child of the Depression, and there were all sorts of secrets that we think she took to her grave. And there were times growing up when I'd be hanging out at her apartment on the Upper East Side on her, usually collapsed on her oriental rugs having a meltdown because I always felt safe having meltdowns with Baba, you could go to Bubba's house, just to have a nervous breakdown on her carpet. And look up at her apologized profusely. And she would just say, I don't care if you're laughing or crying. I'm just happy you're here. And I try to have that same kind of unconditional send that same message to my own children who definitely have many meltdown on our Moroccan cart rugs. But Baba, I what I loved about her was she was so positive, she was so full of light. Everyone was drawn to her. She was so magnetic. But she did have dark stuff going on. And I remember many times walking into the living room, especially when she was older and saying, you know, what are you thinking about? And are you okay? You look a little blue, and she'd go, I'm just thinking about my life. So it's not that she didn't have difficult things going on. She just had a curiosity about them. And she wanted to participate in them, even if they were hard. And that's something that I learned from her. You know, I think I confuse people sometimes with my positivity, because I think positivity is misunderstood. As a cancer mother, I would I've my son has now been through brain cancer twice. So we've lived at the hospital now twice. And there's always there have always been those other mothers or parents on the hall who do not have the same outlook, who I really annoyed. But like my Baba, I would show up even during the worst of times in my, my dress, put my lipstick on and try to you know, have a have a better day than I'm having. And that definitely would confuse people. And I feel like it still does. I mean, I have a child who has been through cancer twice who's still living with cancer. I myself am a recent breast cancer survivor. And you definitely run into people who look at you like you're an alien and that you're not walking around sobbing you know, slitting your wrists, but it's because of Baba to speak. And that's why we're invoking her. It's just that spirit. I think at the end of the day, the word warrior gets on my nerves, because it's like so overused, but at the end of the day, it's a warrior spirit. It's that spirit of just going to keep going. We're not denying feelings. We're not denying how shitty something is. But we're going to keep going because, you know, let's also be cheesy Mary Oliver. Sorry, one precious life. What other choice do I have? I gotta show up.
Nora Logan: 8:18
And I think there's a misconception about around the warrior naming of people who've been through really difficult things, because people have named me a warrior in the past. And I've also taken put that hat on and then also taken off, but I don't know if it has to look in the way that maybe people expect it to look, I think actually, that warrior archetype can be the person also saying the cheesy Mary Oliver line, although, you know, I'm a huge, huge. I feel like Mary Oliver is my patron saint. Oh,
Unknown: 8:54
me too. But, but it's just been it's like Mona Lisa. It's just been like so over us. So you know,
Nora Logan: 9:00
exactly. Yes, of course. And it's also the worry also has lipstick on, and most times, you know, is the warrior is not that which you might imagine it to be. I love that you kind of bring that in.
Unknown: 9:16
Yeah, I think the warrior is complicated. And that complexity doesn't get addressed enough. So as a cancer mother, I felt limited in terms of how people saw me, you know, as a cancer mother, the minute your child gets a cancer diagnosis, you are immediately as their caregiver murdered, right. And just only seen as the selfless mother who's trying to keep their child alive, but there was so much other shit going on that was keeping me alive, right? And then as now a breast cancer survivor, we're called warriors. We're supposed to like put our sneakers on and go walk these walks and you know you're such a warrior. You lost your breasts but you just Keep going. And it's like, Yes, I did. And I did it as gracefully as I could. But there's a lot of complex feelings there. And it's tough when they get washed away for the convenience of other people. I actually saw something this morning on Instagram. Well, I'm blanking on her name now Oh, Kate bowler, wonderful writer. And she said something along the lines of, you know, people always want to fix things, they want to talk at you, when you show up with your crisis, right? When all you really need is I forget the exact words she used, but something along the lines of just like understanding silence, like just let the warriors in your life, if they are, that day that you're with them experiencing some sort of crisis or having a hard time, let the warriors in your life just show up with all their complexity. Don't try to fix them. Just lean in and listen, because I think that's the only way we're going to learn more about who warriors are, is if we just shut the fuck off. And you know, like, for instance, as a breast cancer survivor, now, you know, we caught it early, I lost my breast. Now I'm on hormone medication, which is causing all sorts of problems. But people always say things like, well, at least you didn't have to do chemo. Well, at least you didn't have to do radiation. And it's so insulting for someone like me, because I've been through chemo and radiation with my son. So I get that I had run of the mill easy to treat cancer, but so my point is, people and I didn't know how to do this, and I probably still fuck up. But I just wish people would learn the art of just witnessing and holding space. Because when you do that, you can learn how to love your warrior more. Everybody wants to love the quote unquote warriors and their life, but they don't shut the fuck up enough to actually hear what those warriors need. And my Baba as much as we're idolizing her was a total chatterbox and wouldn't shut the fuck up. So that was her one fatal flaw she didn't always listen. So I definitely trying to fix that ancestral Chatty Cathy? thing.
Nora Logan: 12:21
Yes, that's I also have that ancestral, Chatty Cathy, also trying to see.
Unknown: 12:27
And I think the other thing is, when you've got a lot going on, when you've been a warrior, you're a real source of fascination for people. You're a source of fascination, and you're a source of dread, because a dear friend who I love, who always just says it straight, she's like, you know, Alexa, were proof that there's no God. And that's really, that's really inconvenient for people that just want a joke, like, I do believe in a higher power. But we're proved that bad things do happen to good people. And that really fucks people's trust up. So it's like people want to be there for you. But they also don't want to catch the contagious chaos. And that's something I've, I've been through now quite a few times. So it really leaves the warriors at a really weird situation, you end up spending a lot of time taken care of people other than yourself or the person you're caregiving just to get through the day, and it's a burden that you can feel so ungrateful saying it these people have fundraised for you they've brought made you meals I've had like five meal trans people are so wonderful, they want to show up. But at the end of the day, there's this little, this little pocket of space that doesn't get addressed. And that is how to really show up on a soul level. For the people in your life that have been through things you can't even imagine. And don't try to imagine them just listen to what it feels like.
Nora Logan: 13:59
And don't try to fix or expect the person to be the person who they were before. I think that's a major thing that can come up in, in these sorts of situations. And I think often it's a grief for the for the person trying to hold space to write. So it becomes an expectation of like, oh, you're just gonna go back to normal now. Right? But that's just not realistic. And it's not everyone, of course, but it can often be this sort of, like, Oh, you're fine now, right? Because you've gone through treatment or you've had things have settled down and everything's going to be normal again. And so often that's just not a reality that anyone can go back because they've been through so much.
Unknown: 14:50
Right? And that's another spot where people get really confused and where you yourself. Let's also keep using the warrior even though it's kind of annoying, but the one worrier themselves, I think is can various use by this, right? So the first time my son went through treatment for brain cancer, we were he was one years old. And it was an almost a year long process. And at the end of it during and at the end of it, I as a new twin mother was writing and I was writing a record as well. When Lou was home and well, I was going to record the songs like I had all these projects, I applied to graduate school, I was so determined to not lose myself to the crisis, right? And I did all those things. Put my record out, went to graduate school was featured in all these mommy blogs. Look at this amazing super Mommy, you know, and like it all felt really good, right? And then there was born my reputation as a very resilient person, right? You couldn't argue that I wasn't showing up for my family. They came first I showed up but I was taking care of myself as well. Right? You know, when I was in the ER on Friday night, that same loop was running through my head, you're so strong Alexa, you can do this, you got this. And then about at like the four hour mark when I was still waiting to be seen. I burst into tears. I went marching over to the nurse's station. I'm no stranger to a hospital. I knew they were not handling this, right, I knew that communication should have been happening. And I allowed myself to kind of be the crazy woman in the ER. And I am a little ashamed. But I also joked with my husband, listen, I got a lot of problems. I'm not like a model, human right. But I joked with my husband, everyone else behave so badly all the time. Why can't I you know, and in my experience, the people who've been through a lot of shit are the most well behaved people, because we're always trying to choose our battles. We know if we're not in the PICU with our kid, or if we're not with a stage four diagnosis, life is good. But life's not actually not that great when you're in the ER on a Friday night, and you've have something erupting in your ovary. And also,
Nora Logan: 17:03
I think, I'd like to know what you think of, can we start to reframe resilience, like for me earlier this year, I was going through a lot of turbulent moments in terms of where I was living and what I was doing and how often I was in my car, you've, you know, just moving around a lot. And I remember on a long drive, like a two and a half hour drive one day, I was like, Well, what if I just leaned into this idea of being a mess? Why can't I also be a mess? And yeah, a lot of people call me resilient, a lot of people will will say, you know, you have set these deep wells of strength. And one person recently referred to me as relentless, which I actually, I picked that up more than, than the idea of resilience because it I do keep going. But I don't necessarily feel like I have to bounce back that maybe I did in at the beginning of my illness in my life even. And I think it's really important for us, as you know, people who are chronically ill who live with disability who are cancer survivors, like yourself, to allow ourselves to be a mess, to allow yourself to be the crazy lady in the ER once in a while, because we need moments of unraveling. So with that said, if you were to reframe how resilience looked like in your, in your being in your soul and your body in your life, what would that look like for you today? And you may not have the answer for it, since it's just kind of coming up right now. But yeah, do you have any thoughts on that?
Unknown: 18:51
I don't know. You know, it's really, it's really difficult. Because, again, you don't want to make it sound like everyone in your life isn't showing up every because they are they're all showing up. So as best as they can. I mean, we have an incredible community, I've got a wonderful family. It's just that it's very hard to show that private little cave that we have in ourselves, we, it's the most I think we all have that spot. It's the most private spot that nobody ever accesses. And I guess for me reframing resilience would be I write about this a lot as you know, sometimes the the terrible things I always refer to the traumas as the terrible things right, almost like Where the Wild Things Are. Instead of the monsters it's the terrible things so sometimes the terrible things will be so in the forefront of my mind when I'm with a friend that it's almost like if I open my mouth, they're gonna fall into my hand and I will be forced to show this poor friend Are these terrible things that have fallen in my hand, I liken it to, when my kids go off in the woods, they come out and they find something totally gross. And they show me and I have to be like, Oh, cool. It's like, I would like to reframe resilience, that I can feel comfortable showing up with my terrible things in my hand, and not have people say to me, but you're used to terrible things, or you've have a track record of being good with terrible things. I think it's really about being present on that very day. Because you can wake up and have a day where you can walk around with those terrible things in your palm and be totally functional, and be shining, like I can have those days where I'm shining, Alexa with all my terrible things. Everyone's so impressed with me, allottee, yada, Yadi, right. And then I've got days where I wake up and those terrible things. It's not going very well with them, I can't be present, because they're obscuring my vision. And I want to be able to say to the people in my life who want to help, I'm having a day where I can't see. And I need my inability to see, to not threaten their security. It's very complicated, because you know, you don't want we're not picking on our beloved inner circle. It's not that because we're all fumbling around in the dark, whether it's in our own little cave, or with each other, trying to hold space. So it's, it's really like a community effort, pushing resilience more into the light. I like to think of it that way. Because, um, again, you don't choose to be a resilient person, you and what will you I mean, you do you choose, like my Baba would say you choose if you're going to wake up positive or a mess, right. And I think it's okay to choose a mess sometimes. And I'm trying to get more comfortable with that. But you don't choose these things that have happened to you. And my friend Seleka, who wrote between two kingdoms, she writes about not wanting to be known for all the terrible things that have happened to you. Right. But at the same time, you need to be seen through that filter. Right? I talked to a friend of mine, who is also we joke, we're in the cockroach club, the indestructible cockroach club, right. And I have a friend. Yeah, it's a wonderful, wonderful term, I have a new friend who doesn't know my other fellow cockroach club members. But I should introduce her, because she's definitely a cockroach and is going through a lot of multiple things. And we talk about all the time, how, again, we don't want special privileges, because we're dealing with compound a trauma, I mean, who isn't right, but everybody's somewhere different on the scale of terrible. It's so it's like, we don't want special privileges. We don't have special privileges. But we also need it to be acknowledged that we may not still be the girl who, you know, eight years ago was able to get back up again, and make a record and go to graduate school. And I am dealing with that right now. Like, do I cancel these writing assignments? I agreed to because I might be getting emergency surgery. I want to keep them because I want to say yes to life, right? But it's okay, if I cancel them. It doesn't mean I'm betraying this resilience that everybody is holding me up to.
Nora Logan: 23:47
Yes. And it doesn't mean that more writing assignments aren't coming down the pike, right, and writing more and more, you know, it's not, it doesn't mean that more life isn't to be lived. And right, actually, since you mentioned it, just to go back to that moment in time, when your son Lou, you have two two sons, Lou and west. And Lou was diagnosed with a rare form of pediatric brain cancer, as you mentioned, when he was one year old. And you've written about it beautifully for so many years now. And you use what you've also talked about having that diagnosis come into your life and everything having to be rejigged and wanting to hold on to that elecsa that sort of made in and then stepping into the mother that was also a musician and artist and wanting to be out in the world and then holding these two really confusing and complicated realities. Can you talk a little bit about when he was first diagnosed and how that landed in your family's life?
Unknown: 24:55
I mean, it was a really dramatic so funny because I've been trying to write a Essentially a memoir about all this. And I really think I overthink it because it really could just start with this. I, when Lou was about 10 months old, he stopped nursing and was on a steady decline. And it was easy to see he was on a decline because his brother West was not and was thriving. multiple trips to the pediatrician, nobody knew what was going on. He was like a ticking bomb got to the point where he was sleeping like 15 minutes at a time and waking up screaming and I didn't go from made into mother. When my children were born, I was still very much in Maidan. And my friend Sarah Darren Wilson just wrote a book made into mother, which I recommend to everyone. It's not just about being a mother. But it's about sort of stepping into, you know, this more powerful female archetype. And for me, the day that that happened, I was asked to play a show, my friend Ben asked me to play a show opening for him. And even though I had a sick child with a mysterious ailment, I said yes, because in my hysteria in my unswept hysteria, it felt so important that I play this show. And before I ran to meet a new pediatrician that morning with Lou, I put my guitar and address the problem didn't fit me anymore. By the door, thinking I would come back, we'd work out whatever was wrong was Lou and I would go play the show. I'm embarrassed to say this now because it makes me sound like a very selfish mother. But it was important to me everyone in my life agreed. Sure. Go play the show. It's important to you Alexa will take care of blue, right? So I run to figure this out to meet this new pediatrician. Usually I take I would take a taxi across town and for some reason I ran with Lou I had him strapped to me. We ran down the subway steps. It was summer it was just brutal. He was listless attached to me. Subway drums are going I mean, it was like we entered an alternate universe. And as we're waiting for the train, I see this very skinny, very gray, very bald person and a mask approach me. And I realized after he said my name that it was my friend Jonathan, who was a photographer, and he was I mean, this is so wild how this worked. He was the last photographer when I was still actively a singer songwriter who took my portrait for a magazine. Right before I had my I was pregnant. So he took the last portrait of me as that willowy, carefree, you know, spooky chanteuse. And I had no idea that he had been diagnosed with cancer and was going through cancer treatment. So there I am on the subway with my child. Somebody I know and love is standing before me completely transformed. And little do I know that the minute I stepped on the subway and get out, I too am going to be transformed not only from the Maidan that Jonathan took the picture of to a mother, but I was also going to be granted entry to cancer Island, an island that I had no experience with. So it was this crazy foreshadowing but bumping into Jonathan that day, right. And when I said to him, my baby was sick, he panicked and so I gotta get out of here. And he ran up the stairs and it was so spooky. I got on the train. I googled to make sure he was still alive. Like I was out of my mind. And I see a ghost. Of course now I know he was running away because Susan immunocompromised and shouldn't have been around, quote unquote, sick baby. Anyway, that crazy shit happened. We get out of the subway, and I walk slowly to Mount Sinai. And we saw a new pediatrician who thought to measure loose head. And she sent me on this wild goose chase down in the bowels of Mount Sinai. And it was this wild labyrinth. And while she did that, she sent us on that Chase. She was arranging for a surgeon to meet us in ER. So when we were done with all the tests, were spat back out onto the sidewalk and I just remember her calling and saying you need to come meet me and ER. And I'll never forget that moment. My legs were shaking like in a dream in a dream where you want to move but you can't. The minute the sliding doors open to the ER I knew I would be walking into a new dimension. And I was no mother ever thinks they're gonna walk through the sliding door and be told that their child has a huge hemorrhaging very difficult to remove brain tumor. But that's what I was told when I met the surgeon. And you know, we took it from there. Lou had brain surgery and then we found out it was cancerous and The initiation just continued, right. And I obviously never played that show. And I think there is a part of me that has been trying to go back to that old apartment, which is no longer my apartment, there's a part of me that still wants to go back and retrieve that bag and retrieve that guitar, as though it's choose your own adventure. And I could have chosen Page Six instead of page 24. Of course, it's not that I didn't have a choice. But there is that part of Alexa that I left behind this whole time, and I'm still trying to retrieve her. And it's not the part that never had children. It's not like, Oh, I wish I never had children, none of this would have happened. It's just a part. So this is gonna sound a little goofy. But I got really interested in shamanism these last few years. And I was reading all these books about, you know, spirit loss and soul retrieval. It was very interesting to me on an intellectual level, whether or not I believed in it, because I, it got me thinking about the part of me that I left with the bag and the guitar. And in the hospital, in the hospital, right. And there was two parts of me that I've left, like, I left that part of me who wanted to play the show, right. And I think I banished her, I banished her all these years, because it wasn't safe for her to come back. So as an artist, there was that artists wounding of like, I need to send you away for a while, because things aren't safe for these things. That means so much for your soul, you know, music and performing. And then there was the part of me and I had an I was going through an initiation, for which there was no room for her. I was becoming this other person, this the cancer mom, the warrior. And to my surprise, when Lou was in treatment, that whole time I was in touch with Jonathan, he was going through treatment in a different hospital, we ended up losing him and the night he died, since we're getting a little mystical. I heard him say my name. And there was such a connection there. I knew with Jonathan passing, that that part of me that he had captured was also gone. And thus began this new adventure of cruise ship living. That's what I called the cancer ward. It was like Love Boat, all of these families, all with the same goal, trying to keep their kid alive, it was the first time it was the most profound experience of my life. And
Nora Logan: 32:57
can you speak a little bit to that relationship between the, you know, as a caregiver, you're showing up every day for your kid, and you refer to it as Cantor Island and this idea of being on a cruise ship. And that was very much my own experience of being in the hospital too, is that it really felt like this whole universe unto itself, in which the outside world almost didn't exist, although you always kind of knew that it was out there, but you were living your own reality. What were those relationships with the other families like the other caregivers going through a similar thing to you?
Unknown: 33:38
They were fascinating to me. Because the second one, we were in the new fancy Hospital, where we all had ample space, single rooms, but we never saw other families. So it was a different experience like that second time, it was just the lonely only club, like I didn't have anyone to talk to, and I would leave the hospital to wander the other worlds just alone. But that first time, it was almost like I liken it to Girl Interrupted, or I've read a lot of memoirs about psychiatric institutions, because there there's a similarity there more so than with memoirs about adults who are ill, because they're I can't explain it. But there was very much like we went we both went to this. We went to the same prep school, I was a boarding student and there was something familiar to the ninth floor at the hospital to me, and I think it was a mix of what it was like going to boarding school and living with 30 other girls and just being up in each other's shit, right. And then this other wild, almost psychiatric institutional experience because as caregivers we were forced to live sleep and Eat on this floor where we got zero sleep, where we were constantly being woken up by beeping emergencies, and where we were expected to be on our best and be on the lookout like tigers for our kids well being. So it was sort of an impossible ask. And there was a whole gang of us the first time there was my friend Maria, who was younger than me, she was from Brooklyn, born raised and Bensonhurst. I love Maria so much. We had nothing in common. We had no idea anything about the other, except that every night after our kids went to sleep, we'd meet in the hallway and share this common wound. And there were a few other parents there that would meet with us. And what was so strange about it was we needed each other, but we didn't really get to know each other other than the very present what we were dealing with in that moment. And fascinating to me, were the different ways in which we were all coping, we would show up for each other. But we all had crazy shit going on, to help us survive privately. So for instance, I had my own shit going on when I would leave the island, certain relationships, certain friendships, certain stuff I was up to, just to survive. There was a mother who had a shoplifting problem. We all knew it. There was the dad whose wife couldn't handle it. But Wasn't there something going on with him in the nurse like so there was just it was it was like a soap opera, right? But we never talked about those things. But I'm fascinated by those things, the things that we had to do, I brought Lou recently for some routine tests to the clinic. And this dad I'm talking about was there with his daughter, and I haven't seen him since this first hospitalization. And we looked at each other. I kept looking at him, he looks so familiar. And he was looking at me and I was looking at his daughter. And then it dawned on me when I left. Oh, my God. It was the dad, his wife couldn't handle it. And I was remembering how we all had. We all had such a fascination with him. Because he was this mother who couldn't handle it, did we secretly envy her. She had the gall to not show up for her kid, right. But when I but my point of my rambling story is when I saw him, my face turned red, and I got nervous almost the way you would get. And I know this is gonna sound crazy, almost the way you get if you run into someone you slept with once, okay. And I couldn't quite put it together. But it's because he had seen me at my most raw. This was the same dad who came running when I was screaming when my child disconnected his port, and there was blood spilling everywhere. He stood in the doorway. And then Maria showed up and I stood there with my hands outstretched showing them my terrible thing. So it's just wild. I get goosebumps thinking about that. I don't know his name. I don't know. I'm happy. His child is still with us. But oh, I got goosebumps just seeing him that day, because it put me right back there on the ninth floor. And maybe getting back to what we were talking about, like, how do I show up? For the people who want to love and take care of me in my life? How do I open the door and scream like that? Yeah.
Nora Logan: 38:43
How do you how do you take off all your clothes? Right? Yeah, it's like, how do you like if it's, you know, likening it to running into someone that you've sucked with? That dad saw you metaphorically naked in this 100 In that state that you just aren't in it when you're walking in through the world? And I think we would do well to kind of show everyone those other parts of ourselves because it's very, it's almost sacred.
Unknown: 39:13
It absolutely, absolutely, absolutely. I didn't know what to say when I saw him. But there was a part of me that just I was filled with so much gratitude. It's almost like I am fascinated listening to war veterans talk about, you know, their bonds. My own grandfather had Bubba's husband Bora. He was a war hero and he had this best friend that he would always talk about and I remember as a child being fascinated with who was his best friend that he survived the camps with and escaped and that's how I feel about this dad and Maria
Nora Logan: 39:52
their big features in in our lives, especially when you've gone through a hospital experience though these big characters. And then it's so interesting as time passes, it's definitely been true for myself that, you know, the nurse who was there every single day with me, the janitor, the the other transplant recipient, who was my roommate for a time. And yeah, I'm not seeing any of them for many years. And if I were to see them, what would that feel like? Because it was, and I have run into some people who feature largely in my own narrative and my own story of my time in the hospital. And it always does feel a little bit exposing, in a way, but also very, there's like no other relationship like it. There's no other sort of, there's no, I can't think of a better word than relationship. Although it's not the type of relationship that we think of touching each other. We don't call each other. Yeah,
Unknown: 40:58
my, they're like, they're minor, major characters. I think we've talked about this, I've written about that first treatment, there was a barista at the cafe nearby. And my only relief every day was going to this cafe and getting my coffee. And, you know, he was bearded and tattooed, and he was playing Neil Young, and it felt like, I would walk into my former life every time I went to get the latte every morning. And he's a great example, because he didn't know my story. Yet, every morning, we would look at each other. And there was some sort of something that glued us together. Years later, my friend LaTonya was having a tag sale. And he walks up with his pregnant wife, or partner. And I hid very quickly under the take the folding table, we pretended to be like organizing clothes. And when he left LaTanya looks me and she goes, who was that? You totally slept with him? And I was like, No, you don't understand. But it was the same thing. It was no, but that person saw me more naked than I've ever been. So you're so right. It's these minor, major characters that are so important to you. Because they they color your story. They color your, your narrative. And they are reminders that, you know, seeing the dad, the dad whose wife couldn't handle it, seeing him at the clinic, validated my memory, it reminded me Alexa, that did happen. That year on the ninth floor did happen. And I know talking to myself here, I know you're having trouble writing about it. But it did happen. And he's there and his daughter is somehow still alive. And your son is somehow still alive. And you're both somehow still
Nora Logan: 42:55
speaking of somehow still alive. How How is Lou doing now and how is West also doing?
Unknown: 43:03
Live is doing great. I mean, he is thriving. He you know he's not in remission. It's kind of a complicated situation. His brain is clear, but he does have lesions on his spine. And as long as they stay asleep and everything stays clear, he'll be okay. But we had a tough year with Lew it was his first year back in school full time because we had homeschooled with a pod during the pandemic and we had been told so that the second time around in the hospital, which was a totally different experience and the fancy new hospital where I had no one to talk to. I remember the the nerdy proton radiation guy came to speak to me before eluded radiation, and basically told me all the things that could happen to him down the road. If we did this treatment, just to let me know. It's like, okay, thank you, you know, learning disabilities, problems with attention. Oh, long story short Lou's back in school, we were just so excited that he's back in school like a normal person. And it was just one thing after another. And I think a lot of it was just like me, Lou had to re assimilate into society, in his case, a classroom of 30 other kids. So a lot of it was learning how to resocialize after all that time. But a big piece of the puzzle that we didn't know until we got all this testing done was that the radiation and the chemo had indeed, damaged his brain. He is a brilliant little boy, but he's considered to have a traumatic brain injury. And everything he went through created something called mild neurocognitive disorder, which means that he has trouble with short term memory processing. He gets brain fatigue and needs break. So all of this came to light and suddenly we realized the reason he was having like disciplinary issues was that he couldn't keep up he couldn't focus And it was his way of getting the attention. He needed poor little thing. So it was a tough year. But he was clever. I mean, it's very clever to be mean to your friends, because you know that if you are, the teacher will take you aside and you can rest your brain but also such an example of what we're talking about, like looser, resilient, loose, so amazing. Lou is having a hard time. And nobody was making space for it, you know. So then West was hard for West to be at school being like my brother gets in trouble all the time. First of all, it's hard to be the shy, reserved sibling of an eccentric, outspoken, lunatic like Lou. I say that with love. It's already difficult. But then to have to stand up for his brother at school like my heart broke when Wes walked in on my husband and I having a conversation, we were going over the results from lose neurocognitive feedback evaluation, or evaluation feedback. And we try to, you know, not involve the children, obviously. But Wes walked in, and he had overheard what we were saying. And so he wanted an explanation. I could tell he was worried. I said, Oh, no, no, no, no, your brother's just had some testing, because he's having trouble learning at school. So we want to get him the support that he needs. And he goes, Well, what's wrong with him? And I am not wanting to bullshit my kids. I don't want to put stuff on them that's too advanced for them. But I also know to bullshit them is a disservice. So I said, Listen, Louis, had a lot of treatment, it can affect your brain, his brain works a little differently than other people. And that's why he was having problems with his friends. And, and Wes looks at me and he goes, Well, you need to tell his friends. You need to tell everybody. He was saying, everyone needs to know this so they can understand him. And I was just so blown away. Now imagine if I hadn't West, his nine year old little boy, we're talking about me as a warrior, whatever. I wish I had a west on my shoulder saying, You need to tell everyone, Alexa, that you suffer from crippling anxiety, that you're not able to show up sometimes that it's just shows that kids sometimes are just so far ahead
Nora Logan: 47:23
so far advanced from the rest of us. I mean, even as you were saying that, and telling me that that tears come to my eyes, because it's the brilliance of West to know his brother so well that he knows that that's the right thing. Most likely for him, and for everyone else to know these things. And I think the reason why I find it so touching is that, like you say, in the adult world, we don't feel like we always can show all the parts of ourselves or what or advocate whether it's the anxiety, yes, or advocate or advocate for ourselves and let everyone know what we need in a certain moment.
Unknown: 48:07
Yeah. Well, I think Wes was also telling us, You need to tell everyone because I can't shoulder this burden at school anymore. Which was huge. But I think it's a great example. I think Lou is a kid that really confused everyone. Just like I feel like I confuse people. Sometimes I got the nice dress on I put the lipstick on, I show up. I'm always happy to be where I am and very friendly. I'm very giggly, just like Bubba, right? But there's all this shit going on. And so it can be confusing. Lou shows up super fun, super entertaining. And then kind of Dicky to his friends and getting into these social messes because he's has anxiety and doesn't know what's going on with his brain. So it's just, it bonded me with my kids this these last couple of months. And I think we can use lose, you know, neuro psych evaluation and his diagnoses in that area, almost as metaphor for all this other shit. And I thought that when we went back to the clinic to get these tests for him, and we got these tests, just to clarify for readers just does he need special education help people to understand this, they think that when a kid is done with chemo, you know, and the cancer is gone, that it's over. It's not over cancer families are still dealing with bullshit years after because a child is still growing and evolving. So there's more damage done to them just as much as they're more resilient because they're still growing. So it's like a double edge situation. That really sucked. But when we were at the clinic and the psychologist was explaining to me, you know, he may need special education, help. He'll always need accommodations made for him. And again, this isn't an intelligence thing. It's just his have focus and. And as she was saying that I was like, in my head, what accommodations do I need to make for myself. And I feel guilty saying that, but it's along the lines of what we're saying, like, I have never granted myself accommodations. And they can be as simple as saying no to certain social gatherings or letting people know, I'm having PTSD today, and I can't come. And it doesn't mean that I'm not showing up as a warrior.
Nora Logan: 50:35
It's a lot. And originally, when I reached out to you to come on the show, I wanted to get the perspective of a caregiver, and what it's like to be the mother of a sick child of and to be a cancer family. And you've written about it so beautifully. For so long. You started with the hashtag alchemical cancer mom years ago, which I followed for for a long time. And then last year, speaking of terrible things, the terrible things you were diagnosed with breast cancer yourself, which you touched on earlier, I wondered if you would read what you wrote when you shared it. And I know that you've sort of gone through probably five lifetimes since you wrote that announcement. But if you would just read it for us and give us a sense of where you were at when you got when you had been diagnosed and gone through the treatment.
Unknown: 51:30
Sure, sure. And I think it's worth noting that I didn't know how to tell people that another terrible thing that happened, like, and I gotta tell you, people didn't do very well with this. Like, it's just so interesting. It shows how much you're loved. Right? I've my favorite response was this should be illegal. Like, again, I'm not, I'm not trying to be a show off. Look at me. Now I got cancer, like, I mean, it's not that it's just I didn't know how to show up because I already was known for these terrible things. And then this other one comes, just add a know where, and I just want to share that. I handed the correspondence over to a dear friend of mine. She had been in a car accident after having major surgery for something else. And I had said to her, there is no way you should be handling the quote unquote, press release about your current situation. So please let me do it. And it was it ended up really working. I became her like point of contact. And we I had done that before when the loo isn't treatment. So when this happened, that friend said, I got this, just send me the emails. So if anyone's listening and they want to help, somebody's going through a terrible thing, just like being the terrible thing publicist for a friend, if this is your forte is a wonderful thing to do. It's amazing.
Nora Logan: 52:53
I had this I had a dragon myself, I had a couple, and that it's not for the faint hearted, but it is now really, really welcome. It's really one of
Unknown: 53:03
the one that needed that can Yeah, can update the friends and you know, this is where you can get groceries for them. This is the meal train. This is the so anyway. Yeah, I'm so glad you had friends like that, too. But you know, I don't have a huge following, but I have a modest following of very devoted wonderful people. So I did you know, a friend said to me, you don't have to tell anyone. And that almost made me feel ashamed. Like I'm not like dying to tell the world that I have to lose my breast. But I also cannot go through this world without people knowing that this new layer has fallen. And there's now yet another scrim in front of me. So anyway, here's the post. I have some news. I had breast cancer, I lost my breast. That all happened really, really fast eight weeks. We caught it just in time early enough, and I'm cancer free now. It was a plot twist. I never considered cancer mom gets cancer. No good editor would allow that. But here I am. One breasted in bed and really missing my friends. People said you don't have to tell anyone, but it started to feel like I was hiding. And that hurt more than the gash where my breasts used to be. I'm so grateful for my family and friends who have to wilding What the fucking fuck was the unanimous reaction and got us through this in the middle of Omicron. school closures snowstorms. Yes, I'm tired of terrible things. But grace, courage and a sense of humor always show up at the last minute. It's a bright eyed miracle I've come to rely on especially when I feel like I have nothing left.
Nora Logan: 54:56
Similarly to your friends when I saw that, I thought what the fuck I can fuck. We have this personal connection. And also, I felt such a kinship with you over the years through your writing and, and just having similar hospital stories. How are you feeling now? In regards to what you you just read out and what you wrote about it? And also with the knowledge that you were in the ER and Friday night, which you so openly offered us at the beginning of the episode? How are you making sense of something that's completely nonsensical?
Unknown: 55:35
I mean, it's a daily practice, right? When I tell the story, I understand why people get nauseous, I get nauseous, like, cancer mom gets cancer. Like, I've never met anyone who this has happened to if you know anyone, anyone out there is in the same situation, please let me know I'm, I'm not a support group type at all. Oh, my God, no, I'm definitely like allergic to clubs and support groups. I wish I wasn't. But it would be awesome to meet somebody who went from caregiver to patient because when you go from caregiver to patient, you are actively re traumatized. I didn't understand that I was actively being re traumatized until much later. And reading what I just read. Yet, I mean, I've since had reconstruction surgery, I have a new breast. But there's still that gash. They're just like, oh, let's bring this home. Just like I left the dress and the guitar by the door. The woman with the gash in her chest. We have yet to really have a conversation. It was such a violence. It was such a save my life. But I think it upset people. Also, because I I was a performer I'm known as someone showing up. It's an awful violence to happen to anyone. But I think, just for me and my personality, it was very confusing. And right now I'm talking about others. But for me myself looking in the mirror, it was something I couldn't process and I still have yet to process. I have a body that is very strong. It never gets sick. It could go nights without sleeping at the hospital with Lou. It has withstood a lot. And over the last couple years, all sorts of shit started happening. That was in the ER a lot like migraines and I had like all this stuff started happening. And it was a reminder that we we warriors do have our limits. And I am not I am not saying I gave myself breast cancer. I do not believe at all that we give ourselves disease. And there are definitely people in my life who I wanted to throw darts at who were like, Well, I'm not surprised. You got it. And I was like, huh, like another example of silence would have holding space would have worked better, but people don't know what to say. Like they thought that was meant to say. Yeah, exactly like Yeah, so you're saying I did trauma wrong and got punished and had to give my breasts to the gods have you fucked up? But oh, this
Nora Logan: 58:32
is my fault. Okay, cool. Cool. Okay, great.
Unknown: 58:35
Like, I didn't do stress relief enough. Like I didn't, you know, get massages or something. Um, where am I with it? I don't know. It's a new thing. It's, you know, again, I was so hell bent on I have easy breast cancer, they're gonna take the breast. It's probably not coming back. I don't have to do chemo and radiation. I know how bad cancer can be because of my son having a rare form that nobody knows what the fuck to do with. So I am lucky. Let's just do it. I'm told and move on. I'll take this pill every day. We're done. So I tried doing that. And then, you know, last couple of months, I've been having issues with the hormone meds and feels like such a failure. But I know that it's my body and my spirit saying Alexa, you have to sit with the girl who's got the gash in her chest. Hmm. And just get to know her. What does she need? We don't have to make her pretty again. Even though she's got a new breast, even though she's got some new dresses that fit the new breasts. She's got a gash on her chest and she hurts and maybe spend some time with her. So that's where I am with it.
Nora Logan: 59:53
How has it been for you as a family? Having these two cancer diagnoses
Unknown: 1:00:00
I mean, again, West is the one I feel the worst for, like, he looked at me. Shortly after we explained the situation, it was very hard. We needed a lot of help from those team and psychologists and therapists, and they just said, you need to be honest. But you need to explain that this is different than Lou. Explain. So I think I had to, in a way play up this is easy cancer, in order to keep my children safe, because to have your mother knocked down is a big deal. You know, and West, said to me shortly after my diagnosis, so does everyone just get cancer? And I my heart, just he's probably wondering, Am I gonna get cancer? Is Daddy gonna get cancer and I had to explain No. bodies have problems sometimes. And that's why we're lucky to have good doctors who can solve the problems. And you're safe. But that felt like bullshit in a way. Cuz? I don't know. I don't know for safe, right. So it's been tough. Lou had the funniest reaction, he was pissed off that he had to share the cancer crown with me like, there was a, there was a day that I had an appointment and he had a scan, and I was like, oh, we'll just go together. And he was like, This is my special day with daddy, daddy takes me to my scans, like we're dropping you off. And nothing is getting in the way of my Dunkin donut trip that I do. Every time I have a scan. It was so funny. I'm like, sorry, I have cancer too. But recently, he said things like, I don't know how it's come up. But he'll he'll he says things like, you know, Mommy and I have had a lot of time in hospitals, haven't we, or so I think he's come around and connecting, but it is West, I worry about the most. But as a family, I mean, we're exhausted. People don't understand that. Cancer is a full time job. And if you're also trying to hold down a job and raise a family and figure out what's for dinner, and remember to bring rain gear to school and signed permission slips and it's like head explosion emoji, right. But we're managing where we're getting there, we're getting there. Cancer is very secretive. You know, you hear that someone gets sick. They disappear for a while, you see pictures of them bald, they look terrible. They hopefully recover. Every you know, everyone has fundraised for them and done all these lovely things. And then they're back out in the world, hopefully. And everyone's happy that they're back to normal. But what the fuck happened? What happened behind those doors? What happened with the people taking care of them? That was what I was interested in? Who? Maria, the dad who? His wife couldn't handle it, like, where do they go where to where all these people go? How do I share this. And so that's what I decided to do. And I was so exhausted, I didn't really think about it very much. It was good for my writing. It was good for me. And it did bring me into community with a lot of really interesting people. But now, I don't feel the urge to share in real time. Publicly, it's been harder for me. I've been saying yes to some writing assignments that have nothing to do with my story, which I think has been good for me. I've been doing some travel writing, which pieces will come out soon, I'm excited to share. It's been nice to write about other things. And by writing about those things, getting a better sense of what it is I really want to write about. When it comes to the terrible things because they're still in my hand, they're still in, they're still in my head. They're still in my heart, Maria and the dad, and I don't know what to do with them all. But they're gonna come out eventually. And I'm glad that I planted those seeds for myself on Instagram by sharing it, because if anything, it's a treasure trove as a writer to have all those journal entries. And it was my hope that posting my experience with Lou could help others too, because maybe there were people who didn't have the Maria and the dad whose wife couldn't handle it standing in the doorway, supporting them. So I was hoping that I could be I could be someone's Maria by by sharing that. But I don't know I'm in a place where I've had to acknowledge to myself that I need to straighten my health out before I can really sit down with a big project and that projects there. It's on the tip of my tongue.
Nora Logan: 1:04:57
And it'll be there for you. When Yeah, when you I'm ready to do
Unknown: 1:05:01
100%. And we can't force these things. And we you have people around you who are just like so excited to support you and your book and it's wonderful. But it's very hard even to say to those people, I can't take the like, I can't give you my story when it's right here. It's still in my face. I do know that I feel better when I read things that resonate with me. And they're not necessarily cancer stories, as I said, like Girl Interrupted was a very important book for me. There are some other random memoirs and books that spoke to me in a way that I needed to be spoken to that had nothing to do with pediatric cancer. And I guess my my goal is when I'm ready to write the book that that will help someone that'll make you want to rip a page out and tack it to your wall.
Nora Logan: 1:05:54
That's a perfect comment for you to make because you've written about Joy Harjo is crazy brave. Yeah, who is one of my favorite poets and you have her afterward actually pinned on your wall. And many blessings for your own book to be that person's Joy Harjo is one day
Unknown: 1:06:15
can only hope oh my god, do you read that?
Nora Logan: 1:06:18
That excerpt for us?
Unknown: 1:06:19
Yeah, sure. Crazy brave was sent to me by a cancer mom who have never met but who's become a dear friend on Instagram. And we graduated to texting and phone calls, which is nice. But she sent me crazy brave when Lou is diagnosed again. And it is it's an a, you know, Joy. Hi, Joseph, Native American. She's a poet laureate of the US. Our experiences are completely different. I'm a white cancer mom in New York City. But she touched upon that space. I'm talking about that private space. That is universal. So this is the afterword from Joy Harjo is crazy break. The panic followed me for many years. In the beginning, it almost took my life. Like a comment hurtling on a journey through a sky path. I lost particles and let go of that which did not support me. When winter dusk, 30 years later, I paddled an outrigger canoe in deep turquoise waters off the shore of Manila, who Bay on the beloved island of Oahu, in the Hawaiian Islands, I noticed how my thoughts had become like waves rising and falling without urgency or anxiety to them. And I realized that I had let go of the remnant tentacles of panic that had been planted in me years ago, when I was a young mother lost in the middle of traffic. I let it go, I let it go and beauty with love in the spirit of aloha or compassion. I let my thoughts of forgiveness for myself and for others in the story, follow the waves of the ocean and prayer.
Nora Logan: 1:07:59
So Alexa, what does it look like for you to let go of the panic today? In this moment, even if it's just for a moment, it's to
Unknown: 1:08:09
know that you can let go of that story. I think that's what I love the most about that passage. There's a picture of me literally in traffic in the middle of a construction zone with my two little boys shortly after we got out of treatment the first time we look so out of place in this construction zone. So when I read that Joy Harjo for the first time, I immediately thought of that picture of myself and my children. And that's the state that's the state you want to let go of, I want to let go of what happened and how I felt. And so I remind myself that one day, it is possible that I will be lying in the waves somewhere, you know, held by the ocean, and realize that I'm not tormented by that image anymore. So I think that's bringing it back to Baba, right? Like wake up every day. She always said, because you never know what's going to happen. She also used to say, it won't be so bad tomorrow. Now, we all know sometimes you need to wait like, way too many tomorrow's. But I do know she's right. Because the more the time goes on. Sometimes the more time goes on, the more we hurt, because stuff just comes out. And we can't control that timeline. Right. But at the same time, we get separation. And I think that my goal on a daily basis is to honor the hope that that swim, that floating in the waves that release is possible. Here's an example. And just last night, I was survivor and my bio, maybe I should that way people will know and maybe we should connect or I don't know what else and then I was like, No, I don't want it there. And that was an interesting moment for me is like stupid Instagram, right? But
Nora Logan: 1:10:06
no, I love that I have done that many times. And I've had I've had liver transplant recipient and deleted it and put it back in.
Unknown: 1:10:15
Right? And it's like, exactly.
Nora Logan: 1:10:18
It's it speaks to that, like, well, we don't want it to be the whole of our identity. Or at least for myself, I don't want it to be the whole of my identity. But I also it's such an important part of who I am. And, you know, it's, it's I so know what you're talking about in terms of like, this identity piece, where we, we want to, we want to be seen going back to that, like we want to be seen in the entirety of our experience. But also don't boil me down to this one thing.
Unknown: 1:10:50
Because yes, exactly. And I think there's a reason you get me talking, I'll go on and on right about Maria on the ninth floor, because it's similar to war veterans or older people like you want to forget. But if you don't tell it, will it disappear? And does it mean, it didn't happen? It's very, it's very complicated. A teacher of Lowe's. When he was first in school, when he was really little, she wasn't thinking and she said to me, I was talking about our experience, and she goes, you know, you can let that go now. And I felt so shamed. Like, Alexa, just let him be a normal nursery school or let it go. It was the wrong thing to say she didn't mean to be a jerk. But you can dictate when you're ready to let something go, that you can't dictate the degree to which you need to let it go. And I think it's okay, if it comes in and out of your bio, metaphorically. And like it can come in and out, depending on where you are like today. I don't want that shit in my bio.
Nora Logan: 1:12:02
Yeah, exactly. And if if one day, you want to be picking up that that may then buy the guitar and hanging out with her a bit. And then the next day, you're back to Alexa in 2022. Spending time with both those people is okay and normal. Right. It's, it's, it's, it's even welcome. I think older versions of ourselves are welcome here.
Unknown: 1:12:29
And your percent yes, yes. And welcomed. And maybe that's what I want, in terms of rewriting what resilience means and how to show up. I may be actually Nora, it's what you just said, maybe it's permission to show up with like, all this people, you know, those like little cut out paper chains, like you do a figure and then, you know, it's like a chain of figures. Like, I feel like I'm really hitting it with metaphors today. But we're, we are, we all can expand like that, you know, we have so many different people in us. And it's very hard sometimes for us as humans to see enough to show all those sides. Because it's a disservice to everyone, when you don't show them and it's a disservice when you won't see them.
Nora Logan: 1:13:24
So we're coming to the end of our time together. And I wondered whether you would take us out with three questions that I always ask my guests. The first one is, if you lived in a world that completely catered to being a cancer family, what would that look like?
Unknown: 1:13:42
It would be a world in which there were no questions asked, when you asked for help. One of the most difficult things was having to fundraise and I know a lot of families do GoFundMe is when they go through cancer. And I've never been more hurt in my life than when a family member wanted me to break down exactly what they were paying for. That's just an example of you know what, when we had in the GoFundMe, we explained why I couldn't work, right. But that's an example of the ignorance that we have. We don't understand what it means to be a cancer family to lose an income. Even if you have insurance. Imagine how much worse it is if you don't, but no questions asked like, like that teacher who said, Why can't you get over this? Well, I can't. Can you accept me? So I think it's really the more we share these stories, these these closed door experiences. I think we can build a better world for cancer families, for anybody who's living a different kind of life.
Nora Logan: 1:14:58
Yeah, it's beautiful. And then what's one phrase or saying that you always come back to?
Unknown: 1:15:04
I mean, this is I always apologize for it because it sounds a little weird. But I always say to myself, I don't know if I made this up or if I stole it from someone else. So I'm not going to quote anyone or myself. Right now is the safest place to be. Now, sometimes we're not safe, obviously. But when I start really panicking and worrying, oh, my God, I have very insisted is going to rupture. Oh, my God, lose and have a bad scan. Oh, my God, I start like, spiraling out. I go, stop. You're safe. You're breathing. You're talking to Nora, you're gonna have some lunch. Right now. safest place to be stay here. And it's a very, you know, Buddhist thing. Just be here. Now. It's very hard to be here. Now. You have to remind yourself. And I've had to say that to myself, when either when Lou is like vomiting into buckets, and the beeper, the beeps are going and everything's crazy. Right now. Right now we're breathing, we're here. When I start worrying about his mortality, my mortality. I'm here right now. He's here right now.
Nora Logan: 1:16:13
There's so much wisdom in that, because in Cymatics, which I'm quite familiar with you, in a way to ground yourself is by just reminding your body that it's there. And that's so similar to, to that, right now is the safest place to be because we're with ourselves in this moment. And no matter what's happening around us, you still can anchor yourself
Unknown: 1:16:36
and your present. And I did that when I walked into the operating room to remove my breath. Like, it was, I think, my finest moment. I was so scared. And something just overtook me. And I walked in like I was Baba at a party. I just, I'm here. Let's do this. And they looked at me like I was crazy. But if you can get to that, you can get to that beautiful place. And listen, I don't get there all the time. I don't think I've been there since that day. But we are capable of that place.
Nora Logan: 1:17:13
Yeah, and sometimes, you know, sometimes you show up fully for that. And then sometimes, sometimes I'm so impressed with myself and how I'm showing up and then other times I'm crumpled other times in a ball on the floor. And that's great. Other times, you're the crazy lady in the ER, it's just what it is. Exactly. And then Alexa, finally, what's one thing you do to keep yourself creative each day?
Unknown: 1:17:37
Hmm. I mean, it's cheesy, but not cheesy. It's just I write them out. I write when I wake up. I write for a day, three pages every morning. When I was a girl, my mom was doing Julia Cameron's The Artist's Way. And I remember asking her what she was doing. She said, I'm doing my morning pages. And it's something that I've done since I was a little girl. Even if it's scribble, sometimes I'll like look at my horoscope and just copy down what it says from my phone. But as long as I've got a pen to the paper, it's a reminder that it's always there. For me, even if I don't have a lot to say, or even if what I have to say is really boring and pathetic. It's there. And I think, you know, the the hope is getting back to our thesis I feel like today is like, how can we show up to the world in all of our mess. I can do it with my journal every morning. So if I can do it there, maybe I can do it with a mom friend at school, or the teachers or my doctor, or that poor nurse who had to deal with me on Friday night, you know?
Nora Logan: 1:18:50
Yeah, we are big fans of mourning pages over here. And I actually have a similar story with my mother. And amazing sometimes I just write nothing. I mean, I can't even look at what I wrote in the pandemic, it was just so much complaining, you know, the early days of the pandemic of just like, I still haven't left my house. It's been 10 years. But it's as long as you get through those three pages, I feel like it feels very victorious. 100% And that is such a wonderful thing. So you completed the amazing 100 Day Creativity project that so like a Jawad, who you mentioned earlier, the author of between two kingdoms that she started earlier in the summer, which I also attempted. And because I guess I was so busy with the morning pages I didn't actually finish. But um, you've been Are you finished writing a haiku a day. So you wrote 100 haikus? And I loved so many of them. It's amazing. Thank you. I was wondering if you would be so kind as to take us out Today by reading one of them
Unknown: 1:20:01
Sure. salacres 100 day project was just so wonderful it connected so many people. And she's just amazing. i She's a new a new friend and I just, I think part of my being so committed to the project was I just wanted to rally for her. Because if she was showing up every day, I could to love you. So like, let's do this one. Oh, resilience, stretchy, like silly putty the day collapses. Every one is so impressed. But I hold hundreds of collapsing days in the pocket of well worn dresses, strewn flowers, what a big old mess.
Nora Logan: 1:20:49
Perfect, perfect for our resilience episode. Well, thank you so much for showing up today. Thank you for being here and your resilience and your brokenness and all your majesty. I so look forward to this continued conversation that we will hopefully have for lifetimes to come.
Unknown: 1:21:10
Absolutely. Nora and I. I'm full of admiration for you. So this was my pleasure. Thank you.
Nora Logan: 1:21:19
That was a show so life wants you dead. Thanks so much for listening. You can engage with Alexa Wildings work on her instagram at Alexa wilding where she writes about love, resilience and the terrible things. Alexa is currently working on a memoir about her experience on cancer island, so look out for that. You can also find her information in our show notes. This episode was made in collaboration with and support from Soho House. Many thanks to Jamila Brown, Minh Shrimpton and the VA guarantee that all Mohammed Erica Vinay and Teo Vander Baca are illustrations are by the extremely talented Rene Fagan. And if you like what you hear, please subscribe. Leave us a review, or rate us on Apple podcast Spotify or wherever you listen. It's slightly contested according to the internet, but I believe it's Dorothy Parker, who said, If you don't have anything nice to say, come sit by me. In this particular case, that doesn't apply. If you don't have anything nice to say please go sit somewhere else. Reading us and subscribing really makes a difference. You can find us on Instagram @solifewantsyoudead, where we talk all things illness, death, disability and creativity. Thank you so much for being here. And see you next time.