Plague Remedy Podcast

Grief Like Weather: Stephen Policoff on His New Memoir

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SPEAKER_00

I'm Steven Satko, and from Bonnet Scotland, it's the story podcast for readers and writers.

SPEAKER_01

It's hard sometimes for me to hold on to the happy memories without going off into the sad ones, but I often picture her laughing and smiling or her and my wife dancing together at bedtime. Those are the things that really keep me going.

SPEAKER_00

Hello, friends, it's Steven. This episode was very difficult to get out because I'm interviewing Steven Pelikoff, who was in my beloved New York City. And I was here in Barney, Scotland, and it wasn't a great connection. So I had to do a lot of work on cleaning up the audio. So we are a day late. I'm sorry about that. And actually, we're more than a day late because I wanted to get this episode out. When Stephen Pelikoff's new book came out in March, it's a memoir. It's called A Ribbon for Your Hair. I mess up the title in this interview, so you'll get to hear that. The memoirs about his life in the wake of the deaths of both his wife and his daughter. His daughter had an incurable and rare disease. So he and his wife knew they were going to lose her. And then his wife got a diagnosis of cancer. I'm really impressed with the memoir and with Stephen and this interview because he has a way of not sugarcoating the grief that he went through without wallowing in it. And he can appreciate the good times as well. And I'm sure it took him a while to get there. We all have grief in our life. But Steven Pelikoff experienced it in a really concentrated form. And without being cringy, without relying on cliches, he writes about this in a really clear and frank voice. He teaches at NYU. My alma mater. And he also published Beautiful Somewhere Else. It was his first novel. And he won the James Jones Award. His most recent novel is Dangerous Blue. And he is working on a fourth novel. Thank you all for listening. Our numbers continue to go up, and I'm really happy about that. We haven't totally made the transfer from Plague Remedy Podcast to Story yet, which is a little confusing for people, but we're working on it. We have some funding coming in, and we're going to use it to do that and hopefully bring some new things to this podcast. I'm really happy that we can bring authors to you that are published by Indie Presses and the Big Houses. And I hope that you've discovered some writers and some books from this, because that's what it's all about. So please do me a favor and subscribe. Give us some stars and write a review if you want to support this project. And now here's Steven Pelikoff. Steven Polikoff, welcome to the podcast. Thank you. So you've written this memoir, and it's a memoir about very serious things, and we'll get to that. But I had a question. And I wanted to know what clinical writing was.

SPEAKER_01

It's actually clinical professor of writing. It's clinical professor. It's just a way of it's because no one in my program has tenure. So this is contract faculty. I don't know. Clinical professor makes it sound like I can do medical procedures, but it's just a way of saying not a regular professor, but still a professor.

SPEAKER_00

That's that's my only matter, NYU. Shut this up. Okay. I I just thought it was a very strange title, but that's okay. It is strange. That's good. And it has writing in it. So you do it really well. Now, before we get into your memoir, you are a novelist.

SPEAKER_01

I am primarily a novelist, yes. I've written other stuff. I started out as a playwright many years ago. Oh wow and worked in various off-Broadway theaters for a fairly long time, and then decided I just was over doing that. So, yes, mostly in the past 20 years or so, I've mostly been writing fiction.

SPEAKER_00

And that's interesting you started in playwriting because that's how I started writing as well. What were plays? What do you think is the allure of being a playwright?

SPEAKER_01

I love the theater. I loved the theater as a kid. I fancied that I might be an actor at some at one point, although that was preposterous. But the collaborative aspect of it is both the draw of it and also one of the things that eventually made me not want to do it anymore, because a play is never done until it's done by somebody. And that's a problem if you're not getting it done in the right in the way that you would like to have it done, or getting it done at all for that matter. And whereas fiction, you can eventually somebody has to publish it, but you can work on it without worrying about whether there's a whole bunch of other people who are waiting to be involved with it.

SPEAKER_00

I do find plays to be a very unforgiving form. You really have to be very you don't have the room you have if you're writing prose fiction, if you're writing a novel image. You really have to be every scene needs to move something forward. And I think that's actually great training for writing anything.

SPEAKER_01

I I agree. It's I think it's the hardest form in in many ways. But I love dialogue and I've always been good at dialogue. So that was part of the appeal. But eventually I started feeling like the stories that I was interested in telling didn't really fit into the play form or would have fit awkwardly into the play form. And also I ended up being a little bit discouraged by some of the, let us say, crazy ass people that I had to work with in order to get plays produced.

SPEAKER_00

Crazy ass was the diplomatic way of putting it. Yes. Yes. So you started writing novels, and why don't you tell us about your novels that you've published?

SPEAKER_01

There's three. Actually, there's going to be a fourth coming out in about a year and a half. And the three that have been published are all have the same characters. I didn't intend for that to be true, but it just evolved in that way. And they are, I like to say they're dark domestic comedies with a mild buzz of the supernatural. That's it feels like it it covers the bases.

SPEAKER_00

That's interesting. Dark domestic comedies, we see a lot of, but why do you say filled with the buzz of the supernatural?

SPEAKER_01

The main character in the three novels, who's the narrator, is has some sort of portal to or thinks he does to other experiences, let us say, other worlds. And he keeps being plagued by by the mysterious, the ineffable, let us say. Yes. You're you're he's a first-person narrator. He's a semi-untrustworthy narrator. Those are the best kind of novels, I think. The untrustworthy thing. I yeah. He sounds a lot like me, but he's not me. I'm always rushed to to add. Well.

SPEAKER_00

Yeah, unless you're Beckett, you really you can't get that interiority onto the stage, usually. It has to be done in some kind of a kind of an action. You had something you wanted to read to us. Do you want to set it up and introduce your memoir? A ribbon for her hair.

SPEAKER_01

For your hair. For your hair, sorry. That's okay. Everybody says that. The reason I corrected is because it's a line from A Grateful Dead song. It's the last one of the last lines of Box of Rain, which is this sort of a theme of the book, actually. The memoir is mostly about my older daughter Anna, who died tragically young of a rare and horrifying genetic illness. It's also about the death of my wife, who died mysterious, not mysteriously, very quickly, let us say, unexpectedly, about three years before Anna died. So it was leaving me to take care of first in a dying child and her grieving sister, and then me with Jane, my younger daughter, left alone. So that's I know how cheerful this sounds, but I've tried also to include there are slots of finding beautiful things in the darkness, finding some humor, watching my younger daughter thrive against all expectations. And it's also about the medical mystery of this rare and horrifying disease. So the short piece I'm going to read is Comes After section that I, you know, which I talk about Anna's death, which occupies a fair amount of the of the book. And it's a reminiscence about some things that we laughed about together. It's called Bleakies. In 1993, Kate and I bought the house in Ulster County because Kate yearned for a place where we could get away from the city, where she could garden and grill and take walks in the leafy expanse of upstate New York, not far from where we both grew up. The Hapless real estate guide first showed us many unappealing options. One house in Hurley featured several bats sleeping upside down in the windows. Another near Woodstock had the pungent odor of unrestrained mildew. We saw tumble-down mansions in Pine Hill, a glorified ski hut in Boyceville. The last place he showed us was a fading green house on a little cul-de-sac outside the village of Phoenicia, with amazing pine paneling in the dining room and a vast, somewhat raggedy lawn where lovely lilac bushes bobbed. This house made Kate smile. This was well before Phoenicia was written up in the New York Times as the next habitat place. The turbulent beauty of the Esopasque was down the street, but the town, where now galleries and gourmet restaurants flourish, was run down, inhabited by an odd mix of old hippies, exiled New Yorkers, and mountain men who would not be out of place in Appalachia. But looming above the dusty main street with the lustrous peaks of the Catskill Mountains, red-winged blackbirds skittered on the side of the road. After we adopted Anna, we spent whole weeks up there during the summer, laughing at the news reports of grotesque humidity back home in Manhattan. That's why the Catskills were invented, Kate liked to say. Anna loved the house. My housey, she called it. We spent hours sitting in the hammock, pushing her on the swing set we built for her, watching the blue jays and squirrels fight over peanuts that she lovingly placed all around the yard. Most of all, Anna loved being carried and later traipsing down to the creek, where we sat on flat rocks, dangled feet in the water, skipped stones, and bobbed in tubes on the edge of the torrent. We're going to the keek. We're going to the keek, she would chant. One Saturday evening in late June, when Anna was about four, Kate and I were sitting on the Adirondack chairs in our yard. Anna was scrambling back and forth between our laps as she liked to do. We were watching hummingbirds hover above the patch of tiger lilies which appeared every summer, and just as the sun set, a bloom of fireflies arose from the greenery around the orange flowers, as if conjured by some idle magician for our amusement. There must have been fifty of them, and Anna's eyes widened with amused amazement. See, she said, Blinkies. I laughed. They're called fireflies. Blinkies, she said. Because they blink off and on? Kate asked. Anna opened and closed her eyes rapidly as if in demonstration. Blinkies, she repeated, then laughed her glorious laugh. Every summer after that, we'd looked for blinkies in Washington Square Park near our apartment, in the fields upstate. Later, with her little sister Jane, we collected them in jars, then let them flutter back out. After the twin tragedies of losing Kate and Anna, Jane and I were left with the house, still haunted by the absence of the two who loved it best. I held on to the house thinking maybe I would be able to go up there again at some point without plummeting into sadness, but in 2016 I finally recognized what a futile thought that was. Houses need to be lived in, and I could not envision ever living in the greenhouse without Kate and Anna. Jane and I went up there that summer to gather a few beloved possessions and sigh loudly in every room. Before we left, we walked through the overgrown garden where Kate planted impatience each May where morning glories used to snake up the swing sets. As dusk descended we saw little darts of light. I bit back the word blinkies, and when I looked over at Jane, I saw her eyes welling, maybe thinking the same thought, that comical word gleefully echoed each summer by her sister. Not long ago, I was sitting in the garden near my apartment with a newish friend, someone who knew only vaguely the story of my truncated family. As we chatted, little pinpoints of light began flitting through the purple summer evening. Bleakies, I blurted out. She laughed. Fireflies or lightning bugs, right? It's a recurring conundrum. Do I always need to tell my tale? Does my desire not to eliminate Kate and Anna from the discourse of my life outweigh the clumsiness of having to explain the fraught fragments? Once, a year or two after we lost Anna, a neighbor approached me, someone I had not seen for a while, and asked where Anna was and why she never saw her beautiful smile anymore in the halls of our building. And when I told her, she burst into tears. And weirdly, I found myself having to comfort her for my loss. So this time I just shrugged. In my family, we always called them blinkies.

SPEAKER_00

And I think that the memoir excels in those little details that come back to you that you find like the blinkies music is a big part of this memoir. Also, Anna's laugh and Anna's um uh smile are things and things that other friends of hers have mentioned.

SPEAKER_01

Yes. And music was the most important thing in her life. She that's what she responded to, what she loved, what she would have probably ended up doing if she if she could have.

SPEAKER_00

Yeah, he's such she was really good pattern recognition, and knowing what the next note of the melody would be.

SPEAKER_01

Yes. And knowing songs ever, after having heard them barely once, she could sing a song. Oh it was one of the odd phenomena of her consciousness, which no one ever completely explained to us.

SPEAKER_00

You write something that I thought was particularly beautiful. You like grief is like weather. You live in it, you notice it sometimes, and sometimes it is just there. I don't think I've ever heard an image of grief like that, but it rings true. That really does ring true. Thank you.

SPEAKER_01

Yeah. In the beginning of the book, I actually list a bunch of things that people told to me grief advice as I talk about. And that was one of the things that I told myself. Uh, and I wrote it down thinking I'll use it in something. And then when I was writing the memoir, I thought, oh, I should say something about this.

SPEAKER_00

Yeah. Because the weather, sometimes we're very aware of the weather. And sometimes it's there, but we're not as aware of it. And I love that as a metaphor for grief. What are some of the things that people told you?

SPEAKER_01

I mostly wrote the somewhat absurd things that people told me. Everybody told me, don't make any decisions for at least a year after my wife died. And as I say in the very beginning of the book, that was the easiest advice for me to follow, because I am terrible at making decisions anyway. So I I absolutely shoved a lot of things to into the future, kind of. And I still do that, to be honest. But what else? Let's see, people said things like no one who has not experienced the loss of a child will ever understand what you've gone through. And it's like, well, yes, that is true. I absolutely know that to be true, but it's not exactly it's not the kind of thing that you really want to hear somebody say when you are grieving, basically. And a lot, so a lot of the great grief advice were things along those lines. You will survive because humans are like cockroaches and can survive anything. I I know that to be true, but I that doesn't really help me at the moment.

SPEAKER_00

Oh, I think the like about the UK, there are no cockroaches, but I certainly am familiar with cockroaches in New York City, so I can appreciate Why did you think you had to get this done on paper?

SPEAKER_01

I had written about Anna before. I I wrote about when she was first diagnosed with this terrible illness. I wrote about when we adopted her baby sister. And those are things that I really I felt good about writing them. I knew that she could never express the things that she felt about the world. I felt it was my job to do that to some extent. After she died, I it took me a long time to decide that I had to write this. I knew at some point, and my younger daughter said, when are you gonna write about this, Daddy? She knows that's how I process things. And eventually I felt like I there are things that I have thought about that I'm not pretending that I that my experience is necessarily something that other people will gain something from. But I do think, Philip, the idea of trying to work through grief and loss and figuring out how to go on, which is what the book's about, that that's something that is worth saying, basically. And that I felt that's probably my job to say it. It was never my intention to be the bard of family loss and grief, but it's something that I feel like I can talk about and that m maybe other people can get something from.

SPEAKER_00

Yeah, I I I think that's the impetus of writing a lot of memoirs to not only as a duty of care to yourself, but a duty of care to other people who might have experienced less. And we all experience grief, but you but you got it in a really concentrated form because you lost your wife and then your daughter.

SPEAKER_01

Yeah, lots of people said, How did you get through this? And and I have I don't really know, in all honesty. I've never I felt like I had to get through it, and I had my younger daughter to take care of and be concerned about, and that's what got me through it.

SPEAKER_00

I think that helps. Your younger daughter, Jane.

SPEAKER_01

Yes.

SPEAKER_00

Yeah, to help with you, and she's doing well now.

SPEAKER_01

She's doing great. She has a an art world job. She's the executive assistant of the Robert Rauschenberg Foundation. Oh, fascinating. She's living on her own with uh uptown with a cousin and a random third roommate. And she's yeah, she's thriving, which is great. And if I pat myself on the back occasionally because I've I feel like shepherding her into adulthood was, in fact, that was the task I was left with. And I feel like if I've done anything good in my life, that I did good on that.

SPEAKER_00

That must be a great feeling. I noticed in the book you went to St. Vincent's when it was still open. And if I went to St. Vincent's, so if I needed to go to the doctor, I went to St. Vincent's, so I know St. Vincent's. Uh tell us about that that night.

SPEAKER_01

The night she wasn't actually diagnosed that night. She had learnt she was adopted from China. She was seven months old. She was a beautiful, bright, funny, affectionate child. But there was always some there were some weird things about her that we could not quite explain. She had a some a lot of learning disabilities. She had a she struggled to learn how to talk. Her balance issues were on. Nobody could figure out why. And and what she was for, she had she rolled off our bed basically in the middle of the night and bopped her head. And but it wasn't that high a bit, and it wasn't that big a fall. And suddenly she it seemed as if she had something much worse happen to her. And it seemed at one point, the next day, her we called her doctors. She threw up in the morning, we called her doctor, and they said, Oh, it's probably nothing. Don't even worry about it. And then by the afternoon, she looked like she was dying, to be honest. And she was had been utter completely healthy before that. So I literally picked her up and ran with her to St. Vincent's Hospital, which was a ways, but not that far. And they first accused us of child abuse because what they said repeatedly, she has a uh intracranial bleed in that cannot have happened by her falling off the bed. And it was like, that's what happened. And they they accused us, they threatened us with all kinds of stuff. And then and they also said if you'd waited it one more hour, she would probably be dead. They had to do a craniotomy, and she was fine after that. She snapped back. And then they said, This is odd, but she has an enlarged liver and spleen, and we don't know why, and you should get that checked out after they stopped accusing us of child abuse. And then it took that summer, this is the summer of 1998, I think. We went to seven different doctors in seven months, and finally a geneticist said, It looks like she's gotten impecced. Sorry. And that was how we were diagnosed with it. We then took her to the mail clinic a couple a few months later, somewhere I think in it was in 2000 by this time. Because the one and only expert in that disease was Dr. Mark Patterson, who's still there, I believe. And the May Clinic was the only place that could tell us what this disease was like. That's not true anymore. There's there are now various groups, and there are experts around. There's lots of studying of this disease going on, but it's of tremendously rare. It's a of a class of diseases called storage diseases, where the body, for whatever reasons, cannot get rid of certain substances and they store in various places where they're not supposed to be, in the heart, in the lungs, in the brain. And it's cholesterol for pneumopix C, actually. And this is now it's 25 years later, more than 25 years later, and there's still no cure for it. There are some new treatments that are possible, but nothing really does much more than ameliorating the symptoms. How rare a disease is it? I think it's probably not true. Part of the problem is that it's very hard to to diagnose, and no one that's not near a medical facility that knows about it would be able to have it diagnosed. So Anna was from rural China, where there's no way anyone would have known that's what this was. Originally we were told there were probably no more than about 50, uh, 50 children in the world who had it. That I think that's not true. I'm not sure what the, I can't remember the number. It's pretty rare. It's not the rarest of the rare diseases, but it's much rarer than a few others of similarly, Gaucher's disease, which is related to it, and a few others like that. There's no one else in the New York area, for example, who, or at least there wasn't. Now I don't know anymore, but there wasn't anyone else anywhere in the tri-state area that had this illness. Now it turns out I think there are several other children with it. But again, the problem is that children don't with pneumatic seed don't live into adulthood. So that's the other reason why it's so rare.

SPEAKER_00

Tri-state area is lousy with doctors. Yes. Yeah, I had to go to the male clinic to get treatment. Really says a lot. Yeah. And then and then your wife was diagnosed with cancer.

SPEAKER_01

Yes. Yeah. It was, it's actually it's 14 years ago, actually now. We're coming up on the 14th anniversary of her passing. In fact, next week. Or this week, actually. Yeah. She had terrible health and she had various health issues. She struggled with various health issues when she was younger. But this came out of came out of nowhere. Yeah. Yeah.

SPEAKER_00

That that was must have been, you know, you you're kind of looking at the universe, wondering what's happening at that point in life, I think. Yes, absolutely. True.

SPEAKER_01

So you knew you were going to lose two of the closest people to you. Yeah, we had always known that we would lose Anna. Originally they told us she would not live to be past 13, and she lived to be 20. So she beat the odds. Although I think now the odds have slightly increased anyway. But yeah. That was the that was the oddest part because I always knew that we would lose Anna. I always assumed that I would be the one to go, though, since I was significantly older than Kate. And then she didn't even make it to her 55th birthday, sadly.

SPEAKER_00

And you talk a little bit about as I'm always I don't know. I'm always fascinated in I'm fascinated with religion in general because I had a an actual religious upbringing, unlike you, where it was hostile to religion. But you just can't help but getting into that, I think, when you talk about these things.

SPEAKER_01

Yeah. Of course, a lot of people have have asked if my faith got me through. And I was like, yeah, that always causes me to laugh a little bit because no, I've never had much faith in anything. Intrigued by the I'm intrigued by the supernatural, let us say, but I'm more in a metaphorical way. And I yeah, I I was not raised as anything. My wife was a somewhat, I would say, a moderately believing Catholic. And I I I would say that's typical Catholic. Yeah. Yes. Yes. When I met her, she was not going to church and not having anything to do with it. But when her father died, also young, I should add, also of cancer, that set her back a little bit into the church, which I was like, okay, if it if it gives you comfort, that's fine with me. I just I don't want to have anything to do with. And I was never forced to go, except at Christmas, we would I would go to Christmas Mass with her. But that's it.

SPEAKER_00

But you also said that you found you found some solace in the idea of may her memory be a blessing. Yes. And in a way, you're fulfilling that in by writing. Did you ever feel that way?

SPEAKER_01

Yes, in fact. Thank you for saying that. I yeah, I mean, that traditional Jewish admonition to grieving folks was said to me several times, but especially by one of Anna's teachers at the weird school that she went to in the last years of her life, which was the Hebrew Academy for Special Children. There's a whole little section about that in in the book. And honestly, I have to say, when it was first said that when that was first said to me, I was like, that's not gonna work for me. It doesn't really work. But as time went on, I felt actually that does work. That's one of the only things that does work. Holding on to it's hard sometimes for me to hold on to the happy memories without going off into the sad ones. But I often picture her laughing and smiling or her and my wife dancing together at bedtime. Those are the things that really keep me going.

SPEAKER_00

I haven't experienced loss like you have, but I've when my mother went, that was also one of the things that kept me going too. Or keep me going, because I guess it was a you expect a parent to die before a child. When the opposite happens, it's I imagine it must be very devastating. But you always have these memories. And that's a nice thing to look back on. Yes. Also the Tibetan ring. Can you talk about that a little bit? This?

SPEAKER_01

Oh, okay. Yeah. It was something that my wife gave me that I still wear every day. And that there is a whole little section about when she was first diagnosed with cancer, I lost the ring. It fell off into something, into the bedroom, and I couldn't find it. And then mysteriously, after she died, I found it. And my daughter was like, mommy's giving that ring back to you. Which maybe. It's not metaphorically, I'll accept that. And I liked the image of it.

SPEAKER_00

Yeah. And maybe getting back to the music again, because we always wonder about inner lives of the people we love and how that is. And us being human beings, there's always a veil to that. But if they do some kind of art, there's a little leeway into that. They're music, and music was Anna's thing. And I found that fascinating in the book.

SPEAKER_01

She loved music from the very moment that she first heard it. Truly, it was what made her laugh and smile. She was before she can even really walk, she was dancing awkwardly, but still moving rhythmically to whatever music. And because she had so many physical problems, she couldn't really play. She would have she wanted desperately to play the piano. I played the piano, not well, but I used to play for her. And she loved to play along with me. She couldn't really do it, but in the music therapy program that we enrolled her in, they let them bang on gongs and drums and and strum guitars and play the piano. And it was like it was her favorite thing in the world. She every week she that was what she was looking forward to. We did that for seven years actually, until she couldn't really sit up anymore in in her wheelchair. Yeah, but we kept at it to as long as we could.

SPEAKER_00

But you said it was a fragile bridge into her inner life, music. Slender bridge, I think.

SPEAKER_01

Yeah. She her speech. One of the things about Neiman Pixie is that the speech is one of the first things to go. Physical stuff also starts pretty early, but it's less noticeable. So there's a certain point where she couldn't say much anymore, but she could always sing. And which is interesting. If you asked her a question, she would struggle to be able to answer it. But if you played a song and asked her to sing with you, she could see, she could belt it out like a nightclub shantous. And it was amazing, actually. So it brought her great joy, and her ability to sing songs that she'd only heard once mystified lots of people. But it was the thing that that somehow brought her to herself.

SPEAKER_00

And gave you a glimpse of what's going on in her mind. Absolutely.

SPEAKER_01

One of the songs that I mentioned this in the in the book, but one of the time after Kate died, she had already started to lose the ability to speak and hadn't said much of anything for a couple of days. And we were out in Washington Square Park and we heard a band playing while my guitar gently weeps, which was one of her favorite songs. And Anna burst into tears and said, I miss mommy so much. And that was the only sentence that she had said in days, actually.

SPEAKER_00

Oh. That's interesting. That's interesting. Yeah. Yeah. What was the impetus for writing this? Do you remember? Or did it just happen? Or as an outgrowth of having gone through something like this?

SPEAKER_01

I think like as I said, I've I'd written about Anna before, and I wrote a little chat book of about Kate that is actually an abbreviated version of which is the sort of center part of this book. It was in my thoughts for a long time. I'm not sure exactly what finally made me sit down to do it. One thing was that I had the semester off. That always helps. And it was actually COVID. It was during COVID. I had that first semester, I think, 2020 off. Fall of 2020, yeah. And which is a weird time to be off because nothing else was going on. And I think that's part of it. Jane was home from school because of COVID. And I just started thinking I really should do something with all these thoughts I have about Anna and Kate. And I actually wasn't sure whether it was going to be a book or just another essay or what. And then I just started writing it. How was the process of writing it? Was it different than writing a novel? Yes. The thing is, in my novels, I'm never entirely sure what's going to happen. I I know where I'm what I'm heading for, but not necessarily how I'm going to get there. With this, I knew what was gonna happen. And my question was, should I how to should I put it in a kind of point A to point D kind of format, or should I jump around? And jumping around seemed like the right way to go with it. The way memory works, I figure, kind of the way one thinks about the people that one has lost. And that's that was my principal decision. And then I started figuring out which of the pieces were gonna go where. That took me a while.

SPEAKER_00

Was it emotionally difficult to write something like this?

SPEAKER_01

Oh yeah.

SPEAKER_00

I mean Yeah, you say there are parts of it you'll never read again.

SPEAKER_01

Yeah, the writing of it, the writing of it was less emotional than if I try to read it. Writing it was a task I knew I had to do, I had to perform. Yes, some of it was hard to write, but if I look at it now, there are parts of it that I just I don't want to read this again, frankly. I'm hoping that other people want to read it, but I don't particularly want to read it.

SPEAKER_00

Christian Livermore, the co-producer of this podcast, she's written We Are Not Okay, which is a memoir about growing up in poverty. And for me, and I didn't go live through this, but for me, I cannot read. And I read the draft once, but parts of that book I just will not read again, because it was harrowing for me, so I imagine going through it must bring up a lot of stuff. Could you since Anna's disease was so rare? Okay, there's support groups for cancer. It doesn't make it easy, but you know, the support groups for that. Did you find people that were going through similar experiences as you?

SPEAKER_01

I'm not a support group kind of person, in truth. Okay. So no. I have actually now talked to a few people. When I was writing the book, I actually had a conversation, which is in the book, actually, with a woman who had whose daughter had the an even rarer version of this illness, which is adult onset, namely Pixie. But I when I I no, I didn't really want to share with anybody particularly, in all honesty.

SPEAKER_00

And I'm wondering if I make did you find people who identified with your experience or not? Not really. Yeah, because it's very, yeah.

SPEAKER_01

Lots of people have said, I lost a spouse, I lost a child. Yes, there are people, certainly people who've reached out to me about that. And it's not that I not to say that I don't connect in some way to other people's grief, but I'm simply not somebody who I keep it to myself or I put it in writing. That's really my way.

SPEAKER_00

But it is also what do I want to say here? It's also about life with Anna and Jane and Kate. And life with somebody with a rare disease is just different. Yeah. Somebody when somebody gets sick in in a relationship, life just changes. Yes.

SPEAKER_01

There's no question that the whole issue of first of all the disabled child and the well child, that's a tough one, actually. And one of we did strive to make sure that Jane felt like it was not all about Anna. But yes, sort of normal life. We tried to make we tried to maintain normal life, and we did a passably good job until sort of toward the end when it was just not possible, really.

SPEAKER_00

Yeah. Yeah. But to survive for 20 years, Anna, that's actually quite an accomplishment in a lot of ways. Yes.

SPEAKER_01

She had great care. She was much loved. Yeah. The last the last year and a half to two years were pretty bad. She was in and out of the hospital three, four, five times in that last year.

SPEAKER_00

Now that you're working on a new novel, do you find that after writing the memoir, that your approach to the new novel is a little different?

SPEAKER_01

I don't think so. To me, they're definitely different format forms. I've written essays before, although mostly memoir-ish kind of essays. And I I don't think so. I think that writing a novel excites me more. I enjoy it more. It has obviously more of the imaginative aspect, and it's more of a challenge in a lot of ways. Although writing the writing the memoir had was a challenge of its own, for sure. But writing, for me, writing fiction is about figuring out what the heck it's actually about. And that's the fun part for me.

SPEAKER_00

How about a little bit of a process of how this book got published and what your experience was of that?

SPEAKER_01

Yeah, I've bounced from one struggling press to another. When I wrote this, I really I thought possibly could have a commercial publication, but it would have to take an absolutely the right person to find it. And I thought I don't really want to wait that long. I thought, I want this book out in the world. I would I'd like people to read it. I'd of course I'd love to make a little money off of it, unlikely though that may be. But mostly I want it out in the world. And the woman who, Louise Crawford is her name, who runs Brooklyn social media. She had done publicity for my last novel, Flex The Dangerous Blues, which came out in 2022, and which is a good book, by the way. Read by very few, but still a good book. And she, I showed her the memoir and she said, I think I know who might want to publish it. Will you let me show it to this to Hilledro Books? They do a lot of memoirs. They mostly do memoirs. They're New York-based, indie press, but but respectable. And so I said, Yeah, and they wanted it. So at that point, I was like, good.

SPEAKER_00

Let's do it. With all the consolidation, the publishing business, if you say an indie press, it's almost like you're saying a struggling indie press.

SPEAKER_01

Yeah. Some uh have mostly been with various struggling indie presses. They publish about 15, 20 books a year, and they keep it pretty small, but it's also they do a really nice job. The cover of this book, by the way. Right there. I love this. I think the cover is great. This is a sort of a shadow of Anna. And I'm pretty happy with with how it worked.

SPEAKER_00

Great. That's good. It's always good to hear a good experience.

SPEAKER_01

And you're doing some events in New York City. So let's talk about that. The 31st is my the book launch March 31st at Lofty Pigeon Books, which I have honestly never been to, but it's in Brooklyn. Um, and I'm doing it with a conversation with my uh friend and long ago former student, Susan Choi, the National Book Award winner, who's an awesome human being. And I'm doing another reading at Vaughn Bar on Bleaker Street on April 8th with Stacey Horn, who is a nonfiction writer, a reporter, actually.

SPEAKER_00

Ah those were them reporters. I'm a former reporter.

SPEAKER_01

There's some others too, but those are the two coming up. And there's a a virtual one with in Deep Vellum Books in Dallas, where another former student of mine who was the book buyer for that bookstore is doing a sort of a a virtual conversation with me.

SPEAKER_00

Oh brilliant. Have you gotten any feedback yet from people? Publisher at all? Not really.

SPEAKER_01

Trying to get people to review it, of course, is very hard. There's supposedly some stuff that might be happening, but it hasn't happened yet. It's not out yet officially.

SPEAKER_00

Yeah, it's not out officially yet. Yeah. Always our second to last question. What are two books and two other things that you'd recommend?

SPEAKER_01

Okay. I actually thought about this because I'm not a great reader of I mostly read novels, but I have read nonfiction and memoirs. And there were two books in the past few years that I read that really did actually influence me when I was writing this book. One is The Lonely City by Olivia Lange, which is a wonderful book which threads the author's loneliness and feelings of lostness in New York with the story of some sort of famous writer artists. David Wonarovich, Henry Darger, Edward Hopper, American artists who were sort of outsiders and who in some way represented loneliness, lostness. That book was I love that book because it interweaves her own experience of of feeling lost with this attention to other art to artists, basically. I thought that was great. I did a little of that sort of in this book. And the other one is H is for Hawk by Helen McDonald. Oh yeah that's a wonderful book which has been turned into a movie which boggles the mind. I have not seen it but about a woman who channels her grief at losing her father into raising a hawk. And also talks at length about the life and work of T. H. White the lonely deeply closeted British author who also had a relationship with Hawks. A wonderful book. I loved that so those books really influenced me in writing this book. Well how about two other things that you recommend okay I'm not a big jazz aficionado but when I was starting to think about writing this book actually just wasn't about this but was half paying attention to a show on PBS about Miles Davis and his album Blue came on and I had never actually I had never listened to it and it completely captivated me. And I went out and actually got the C D and played it and there was something about the melancholy mingled with little bits of hope and transcendence if you will really affected me and I thought not to compare myself to Miles Davis if he can channel his grief into and his depression into something as beautiful as this maybe I can do that too. So I would recommend that I love that that that music and the other thing that I was thinking about actually recently the Metropolitan Museum of Art is what I would recommend. Although that's a very New York centric but what I'm people have done that.

SPEAKER_00

People have Kristen Innes who's a Scottish author recommended a a place to get a martini that's on a Scottish remote Scottish Ireland.

SPEAKER_01

The thing about the Metropolitan it's more like art bathing is really what I'm thinking of. We're often told that forest bathing is something that's good for the soul to me art bathing is also really good for the soul and what I do when I go to the Met or to any museum is rather than I don't I almost never focus on a particular piece or even never what they what the writing about the art is. I love to just wander through and just look at stuff let it literally wash over me and take some kind of inspiration and feeling of connection from that. So I recommend it. Brilliant and where can people find you and buy your book? You can buy my book on Amazon or bookshop.org you can certainly buy it from any you can you won't find it in any bookstore but certainly you can order it from any bookstore. And my author website is stephenpolikov dot net and it has a bunch of stuff about the book on it. I'm also on Facebook I'm on Instagram also.

SPEAKER_00

Okay brilliant so what's the best pizza in the city now uh you know I'm not sure I'm a little behind the I'm sure my daughter could answer that better than I can you're behind i my my go-to answer for that was always raise on uh 11th and 6th but it's close clothes and joe's is very good and I don't know I tend to order from th two three boot two boots oh yeah two boots two boots yeah yeah I remember two boots with the cornmeal yeah cornmeal spicy sauce yeah I remember two boots okay Steven Polakoff thank you very much thank you this has been the story podcast for readers and writers the story podcast is produced by Christian Livermore and Steven Sacco it is hosted by Steven Sacco and edited by Steven Sacco. Please remember to follow us, rate us and write a nice review. You can also buy us a coffee or a pint in the link in the show notes. And as always thank you for listening