A Beautiful New Memoir Explores The Complications Of Knowing How You Might Die


Talking with Jean Hannah Edelstein about ‘This Really Isn’t About You’

"There's no consideration of the implications," Jean Hannah Edelstein told me recently, as we chatted about the popularity of 23 and Me and other online genetics tests. "Not to be harsh," she said, "people do [the tests], but I believe it doesn't really give your comprehensive health information, because they don't actually want to break it to you that you have Lynch syndrome or you have the BRCA gene or something like that, and so it just scratches the surface... This is what I really got into in the book: When you have this information, what do you do with it?"

For Edelstein, a writer who found out in her early 30s that she had Lynch syndrome, a genetic disease that makes it 80 percent more likely its bearers will have cancer, one of the things she did with this information was write about it, and the resulting memoir, This Really Isn't About You, is a compelling, unsentimental examination of family, mortality, responsibility, identity, and love—all to say, of life itself, in all its painful, complicated beauty.

Edelstein tested positive for Lynch syndrome after her father died of cancer; he had been diagnosed with Lynch after, at a relatively young age and as a non-smoker, he developed lung cancer. (When talking with Edelstein I mention how my own father died at a relatively young age from lung cancer, and we agree that we both always feel guilty when we mention that our fathers weren't smokers, because, of course, it doesn't make them less deserving of cancer—nobody deserves cancer. But it's still something we tend to find ourselves saying, one of those many footnotes that people who talk about cancer often attach to these narratives, and a reason Edelstein said to me: "The way that we talk about cancer culturally, I think, is a huge mess.")

One of three siblings, Edelstein is the only one who has Lynch syndrome. She is the only one whose perception of herself and her future became drastically altered in a way both life-upending and anticlimactic all at once. Lynch syndrome, as Edelstein makes clear, is a peculiar diagnosis; unlike finding out, say, that you have cancer, you are only finding out the possibility that you will one day, almost definitely, get cancer. There's a finality that comes with getting the diagnosis, but there's also something open-ended‚ the knowledge that this is only a prologue, of sorts, that it only begins to tell the story of the rest of your life.

"It does change your perception of who you are," Edelstein explained. "I think at the same time, what I tried to convey in the book, is that there was this hinge of finding out something about myself that hadn't changed. It was not the same as getting a diagnosis of an illness, because I'm not ill, but rather just learning, like, okay, this is a thing I've been carrying all this time. I've been oblivious to it; I've been very relaxed, you know, about life, in a way that I can't be quite so relaxed anymore."

It is at once simple and impossible to succinctly describe Edelstein's memoir. On the one hand, it's a story about loss: the loss of her father, the loss of her carefree attitude toward her own future—one that had been utterly typical for so many 20-somethings. And yet, This Really Isn't About You is also not solely about Edelstein's discovery that she has Lynch syndrome; it is also a bracingly funny and honest depiction of being a professionally and romantically frustrated young woman, a wholly relatable narrative about figuring out who you are and who you want to be in a world that doesn't have any answers for you. This isn't to say that this memoir has disparate narratives, rather that its cohesion is evocative of the way that all our lives are made up of puzzle pieces that don't ever seem to fit as seamlessly as we'd want them to. There is chaos and confusion, bad bosses and shitty boyfriends, a crummy flat in London and an enviously large apartment in Berlin, and an adorable dog. There are all of the things that can happen in your life (not all at the same time!), with the only common through-line being you. And then when you find out something that changes who you think "you" are, as Edelstein did with her diagnosis, then everything gets even more confused. And Edelstein handled that confusion by writing about it.

"I've mostly written memoir type things," she said to me. "I'm always writing from the first person, and I think when this happened to me, I had to tell people about it. That's my way of dealing with things, I suppose, is turning them into narratives."

This isn't uncommon, of course. There are many grief-driven memoirs, and Edelstein's story is in part that. She writes beautifully of her relationship with her father, and what it means to lose a beloved parent when you are only just beginning to understand what it means to be an adult yourself. She told me, "It's like being a part of this club where you immediately identify the other members, but no one wants to be there. That was something I also wanted to dig into, how grief lingers and how you process it when you're an adult, because you think, Well, I'm a grown-up so I should be fine without my parents. But actually, if you love your parents, there's never a time when it's okay."

For Edelstein, the grief of losing her father was compounded by the fact that she would retain a connection to him that was singular among the rest of her family—she would be the only one who knew what it felt like to have Lynch syndrome. And the diagnosis meant more than just the fact that she would have to deal with Lynch's implications to her personal health, she would also have to think about how it would affect the health of any children she might want to have, and even how she would choose to have those children. As Edelstein makes clear in the memoir, women diagnosed with Lynch syndrome are advised to get hysterectomies as early as possible because of attendant cancer risks; if they want to have biological children, they are told to try and do that at a very young age, and if they want to avoid passing Lynch syndrome on to their future children, they will need to do IVF.

When Edelstein was diagnosed—and, at the close of the memoir—she was not in a relationship and was not at a point in her life when she was seriously considering when or even if she would start a family. Having to address these questions was one of the things Lynch changed for her. She said, "Obviously my 20s were like many peoples'—fairly chaotic. I never really had a very clear plan, but I feel like if I had had the diagnosis that would not have been the case. Like, I wouldn't have felt the freedom, both from the perspective of knowing that I always have to be in the position to have good health insurance or good access to health care, and also feeling like the clock is ticking towards the [hysterectomy]. If I had felt that from the age of 10, then I think that would've really influenced a lot of my decisions."

It's an interesting, if futile, thought experiment: Would you rather know that you have a genetic problem like Lynch your whole life? Or would you rather find out about it after you've lived for awhile? There's no way to go back in time, obviously, and Edelstein told me that she is sure she might have, if diagnosed as a teen, gotten married at a very young age, so that she could have children and then have a hysterectomy much sooner. But then she wouldn't have had the life she did have, one that took her out of the United States, and allowed her to live a peripatetic, exciting existence in her 20s, one that took her to where she is today: married and pregnant with a child she knows is Lynch-free, thanks to genetic screenings ("I didn't want to do IVF, but my ethical position with this information was that I had to do it").

Edelstein said to me, "I met my husband about six months after the book ends and then we got married a year later, and I think there are a few reasons for that. One was definitely because of my diagnosis. We met and fell in love immediately, but then, perhaps, if we had been 30 or I hadn't had the diagnosis, we might've just kind of been together for a while before making decisions like that."

But just because Lynch has resolutely impacted her life, it doesn't mean that it controls it. Edelstein explained, "I think this diagnosis has forced me to reckon with [the idea that any one thing controls life] more than most, in terms of [thinking], I could let this ruin my life. It really did throw me and ruined my life for a little while, but in the end, I was fortunate enough to be able to kind of just make it another part of my life."

This idea feels quietly revelatory, the notion that traumatic things can happen, and that they can be processed and absorbed; they don't go away, but they become a fact of life that we refuse to let devastate us, and instead just understand as being part of us. It's a reminder that, so often, the bad things that happen to us in life aren't about us—to echo Edelstein's memoir's title, they really aren't about us, even if they are in us. This is, I think, a helpful way of moving forward in the face of so much that feels so pointed and immediate; it's a reminder that our experiences matter, but that they are made up of so many factors over which we have no control, so whatever way we choose to navigate them is inherently the best way; we are doing the best we can, because we are doing our best.

Edelstein said she learned from her diagnosis that "having a disease or a gene is so personal, but you have no control over it, it has nothing to do with you." This idea is frightening because we want there to be a purpose in our suffering, or potential suffering; we want things to feel fated and determined based on some code that is possible to follow. But it isn't like that, our fate is not written out for us, not in the stars and not even merely in our genes. As Edelstein explained to me, though her grandmother died young, in her early 40s, her father lived to be in his 60s, and a paternal great-aunt, who also probably had Lynch syndrome and dealt with cancer, lived into her 80s. There are no certain futures, a lesson Edelstein learned and gets reminded of all the time. There is only what is happening now, and the ways you can prepare for what is likely, though not definitely, to come. And though that's frightening, it's also liberating. It has nothing to do with you, but it is still your life, so why not live it.

This Isn't Really About You is available for purchase here.

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Illustration by Vivie Behrens

Liberation can come from completion, but then, we are always becoming something new

They say the full moon is about completion. About looking back at the intentions you crowned the new moon with and seeing where those intentions led you. The new moon in Gemini was the pebble that began this cycle, and the full moon in Sagittarius is her echo, the ring getting larger in the water. The new moon in Gemini asked us what we wanted to change about our habits, what we wanted to do with our hands, and our hunger for newness. The new moon in Gemini was interested in the way shifting ideas can give us the freedom to think differently and, in thinking differently, become new people. The full moon in Sagittarius reminds us that we are never not becoming new.

Both Gemini and Sagittarius are mutable signs, they exist in relation to the other and they know how to speak each other's language. But, while Gemini relishes the endless capacity of air (of thought), Sagittarius uses the energy of fire to transform thought into action. Everything Sagittarius touches can't help but change. How can this be completion? The wheel is always spinning, reader. Sagittarius marks the completion of the fire trine. Here, fire is generous and social. It means to gather and teach, to illuminate. Sagittarius lives in the sector of the zodiac chart related to education, philosophy, and the awareness of others—their beliefs and their right to freedom. Because of this, our June Sagittarius full moon is both a completion moon and a moon that reminds us that all endings create space for beginning. The more you leave behind, the more you find. There is no dead end in the universe.

If you are a seeker like me (perhaps you have lots of planets in Sagittarius in your natal chart), you have already come across Jessica Dore's Twitter account. Every day, Dore posts a tarot card and her interpretation of it. It is a gift to many of her readers. Yesterday, she shared The World with us, reminding her readers: "the moments of beauty, belonging & elation that you've experienced up to this point in your life… would still only amount to the tiniest sliver of what this world has to offer in terms of sweetness & pleasure."

I thought about this card and her words all day. The World is, numerically, the last card in the Major Arcana journey—the last card if you don't think about the Fool, who is numbered at 0 and so is the beginning and the end. The World is, therefore, a completion card too, a big echo of a full moon.

This morning, holding the sweet and expansive nature of The World, thinking on Sagittarius people and their love of travel, of reckoning with the edge of an atlas and questioning the map-makers, I pulled the nine of swords from my own Tarot deck. The other side of knowledge is to overwhelm and shut down. Gemini, ruled by Mercury, holds information in her hands. She understands duality in all things. Sagittarius, ruled by Jupiter, yearns for the expansion of mind and the illumination of power. The philosopher and the moralist, a Sagittarius at her best can teach anyone to break open a prison. A Sagittarius at her worst can justify any cage. Don't forget that Jupiter was the king of the gods. His lightning bolt was a weapon. Sometimes, we are too exposed to each other. We imagine we know others through the stories we create about one another. We imagine we know the future because we refuse to be humble about how vulnerable we are to the universe's ever-shifting outcomes. We refuse abundance by convincing ourselves that the cage of identity we build for ourselves is our only possibility.

For the next two days, as the Sun lingers in Gemini and we feel the effects of the moon's fullness in Sagittarius, reflect on the ways you have used knowledge. When has your knowledge been a tool of empowerment for yourself and others? When have you shared the beauty of the world and the joy of radical ideas/ways of living? When have you used knowledge to understand and relieve your own suffering and the suffering of others? And, too, when have you used knowledge as permission for self-delusion? When you have expanded so far into your idea of the world and your own work in it that you forgot how to be accountable to your daily life, your body, your friends, and the people you love? You know when Janis Joplin sings "freedom is just another word for nothing left to lose"? That's only one kind of freedom, and it's the kind that Sagittarius thinks it knows very well. Freedom can be about nothing, if nothing is what you want. Then welcome to the monastery, friend. Freedom can also be another word for everything you revel in not knowing. Freedom can be about having everything because you are part of everything, even if you can't see the relation, even if you can't imagine yet how what you want also wants you.

Photo courtesy of HBO.

Kat is making me relive my fat-teen trauma

When people say that HBO's new Zendaya-led teen drama, Euphoria, is triggering, believe them. In the pilot alone we're introduced to Rue (Zendaya) and her drug addiction issues via a graphic depiction of the overdose that sent her to rehab. Then, there's the disturbing rough sex scene featuring Jules (Hunter Schafer), a teenage trans girl who has just moved into town, and a middle-aged man she met on Grindr. Oh, and don't forget the unchecked, toxic masculinity of uber-jock Nate (Jacob Elordi); or the body obsession of his sometimes-girlfriend, Maddy (Alexa Demie). For me though, the ultimate trigger came via Barbie Ferreira's character Kat's experience, as she dealt with and internalized a vicious form of fatphobia.

Kat—almost alone amongst her friends—seems self-assured and dismissive of the idea that any high school drama should be taken too seriously. "You just need to catch a dick and forget about your troubles," Kat tells Maddy, following the latter's recent breakup with Nate. But internally, Kate craves male attention, and resents the fact that she's the only virgin she knows; she hints at this when she tells Maddy that she'd "settle for, like, four Corona Lights and some non-rapey affection," from a guy—any guy.

Kat's bravado leads her into a compromising situation at a high school party; she winds up in a room alone with three boys, where she talks a big game about how she's a "savage" who watches porn and has slept with more people than any of them can count. None of this is true, but Kat is determined to become "a woman of questionable morals."

The scene shows the fine line between being an empowered young woman deciding what to do with her body, on her terms, and being a teenager who thinks she's in control but doesn't fully understand the power dynamics at play. Because, yes, Kat is trying to make an intentional decision about her sexuality and how to use it, but she's doing so with a group of boys who don't value or respect her. This reality is made clear when one of them says to her, "You know what they say, right? Fat girls give the best head."

At those familiar words, I melted into my couch and said a silent prayer of gratitude that I wasn't watching Euphoria in the company of anyone else. Onscreen, Kat, too, shrinks ever so slightly into herself, all while trying to keep a poker face about the whole thing. We don't see exactly what happens in the room, but, later, she seems happy when she shares the news with her friends that she's lost her virginity; even though she then lays down, awake, scrolling through the guy's Instagram, seeming altogether less than happy.

Kat's isn't the most violent or necessarily the saddest story line in the episode. But it showed the ways that issues like consent, toxic masculinity, substance abuse, and body image—all of which are difficult to deal with no matter what your size—are further magnified when experienced through the additional trauma of fatphobia. This is something with which I've personally dealt, and so I felt my past experiences rise up inside me when I watched how Kat couldn't build her own sexual identity without being constantly aware of the ways her body exists outside the parameters of acceptable desirability.

My childhood and adolescence are defined by my experiences as a fat girl; it was a time that often felt like a hazy battlefield, when I could hardly navigate which feelings and thoughts were my own, and which ones were the result of outside forces. My body hardly ever felt like mine, and it took years to develop the autonomy that Kat is grasping at as a teenager. Kat, like so many other fat women, has a total lack of support from her peers when it comes to body image and acceptance, and there's a devastating absence of affirmation about her own worth and the importance of her pleasure. Because of fatphobia, Kat is going to be swimming against a strong, but invisible current as she navigates the already fraught social politics of high school. It's one thing to grasp this truth on an intellectual level, but letting those principles guide your decision-making is truly difficult—even for an adult, let alone for a teenager.

Euphoria airs Sunday nights at 10pm, on HBO.

Courtesy of RLJE Films

White-knuckle your way through wedding season with Maya Erskine and Jack Quaid

Maya Erskine might have first come to our attention in PEN15, the hilarious show she co-created and stars in with Anna Konkle, in which they play 13-year-olds in the year 2000, but in the just-released Plus One, Erskine is all grown up and engaging in a very familiar adult activity: white-knuckling her way through wedding season.

Written and directed by Jeff Chan and Andrew Rhymer—who just so happen to be Erskine's former NYU classmates—Plus One stars Erskine and Jack Quaid as Alice and Ben, two longtime friends who decide to attend a summer of weddings together, and avoid any of the awkwardness that can come with finding the right plus-one. This is especially important for Alice, who is coming off a bad breakup. Of course, as the laws of rom-coms dictate, nothing stays totally platonic. Beyond that, though, Plus One doesn't fall into predictable rom-com tropes, and instead hilariously explores what it's like to spiral into a quarter-life crisis, all while dressed in optional black-tie. Which, we've all been there, right?

"We kind of use the script as its own therapy," Chan told me recently, when I spoke with him, Rhymer, Erskine, and Quaid, about the film. "We were watching friends who have been broken up for a long time get back together at weddings; we were watching people get really sad and get drunk and start crying... they were breeding grounds for lots of emotions coming to the surface."

Courtesy of RLJE Films

And those emotions have the perfect outlet at weddings in the form of toasts and other assorted speeches. Plus One makes good use of that platform by making the wedding speech the hilarious eye of the storm at each of its weddings. These toasts were delivered in the form of scene-stealing cameos—also friends from NYU, of course.

"Almost all of those speeches are based on a real speech Andrew and I have seen," Chan said. "We'd go to a wedding and [we'd think], Yep, that's going in there."

Rhymer adds that they used these speeches as metonyms for the weddings, which made sense time- and budget-wise: "Being an indie film, we obviously produced 12 weddings, but did so kind of cleverly, showing you the rooms or the side rooms where they're rehearsing. We weren't seeing 12 full-blown receptions in all their glory... that would have been, like, millions of dollars."

But perhaps what's most refreshing about Plus One is that it destroys the image of weddings—and, by extension, relationships, and women, in general—as having to be fantasies, as having to be perfect. Because nothing is perfect, and that's what makes life interesting. Erskine, for one, likes being able to show the weirder sides of life, whether as a 13-year-old girl washing a thong with hand soap or a millennial woman who doesn't know what comes next. "There's something really liberating and freeing to show and bear the ugliest parts of yourself—or what society may deem as the ugliest, weirdest parts of yourself—that no one wants to see," she said. "I'm also an over-sharer. So I am drawn to roles that expose more than is typical, and everyone is weird in one way or another."

"I think," Erskine laughed, "it's because I myself am a wacky trash goblin." As it turns out, that's exactly what rom-coms have been missing, until now.

Plus One is in select theaters and available to stream via Amazon now.

PLUS ONE Official Trailer

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Photo by Nicholas Hunt/Getty Images

That's one way to solve a wardrobe malfunction

Cardi B twerked so hard during a performance that she ripped her outfit and had to rock a bathrobe for the majority of her set.

At Bonnaroo in Manchester, Tennesee, as Cardi got a little too down and into it, a seam split on her bedazzled body-con jumpsuit only moments into her set. Not one to be set back by a wardrobe malfunction, Cardi B rocked a nude strapless bra with a bathrobe on top, making for a Serious Fashion Moment.

"This wasn't just part of the show," Twitter user Lena Blietz pointed out. "No one performs in a nude, strapless bra by choice." I have to agree there. A strapless bra is the bane of my existence on a slow day, I can't imagine what it's like to have to dance in one on stage.

Honestly, watching Cardi perform in this getup made me a stan for life. Despite it not being as flashy as her jumpsuit, Cardi made the bathrobe work, throwing the shoulders down for drama as she paced the stage during each song.

Bonnaroo attendees couldn't help but agree that a bathrobe and nothing else is a mood we all felt in the very, very hot and sweaty crowd. If she had one in my size to share, I would have gladly changed in a heartbeat.

But, despite loving this comfy solution to a big problem, I'd like to take a moment to appreciate the beauty that was the original jumpsuit. RIP.

Photo courtesy of Summersalt

And launched an inclusive summer campaign showcasing 30 different models

Just in time for swim season, sustainable swimwear brand Summersalt launched an inclusive summer campaign, called Every Body is a Beach Body, and significantly expanded its size range.

The brand's sizes now go up to 24 and 2X—quite a jump from its previous availability, which went up to a size 14. Co-founders Reshma Chamberlin and Lori Coulter told NYLON that the size expansion was a must because "we know that there are countless women out there who are missing out on the joy of summer because they don't have the right suit." They noted that they have plans to expand the brand's sizing even more: "We're excited to continue to add more sizes and be even more inclusive."

For the summer campaign, each suit was fitted on 30 professional and non-professional models ranging in body type to ensure it would look great on as many bodies as possible. "We wanted the models for this campaign to be just as diverse and unique as our customers, and we're proud to show models of different sizes, races, gender identities, and physical abilities," said Chamberlin and Coulter. "We want our customers to see themselves in our models, and know that their body is a beach body, exactly as it is right now."

The new collection includes bright new colorways and styles to rock at the beach or the pool. There are bikinis, one-pieces, and even a swim tunic and leggings for modest fashion wearers.

Check out the campaign and some of the new styles, below, and shop the new collection now at Summersalt.

Photo courtesy of Summersalt

Photo courtesy of Summersalt

Photo courtesy of Summersalt

Photo courtesy of Summersalt

Photo courtesy of Summersalt

Photo courtesy of Summersalt

Photo courtesy of Summersalt

Photo courtesy of Summersalt