Joselin Linder is a regular contributor to the NEW YORK POST, whose work has also been featured on THIS AMERICAN LIFE, MORNING EDITION and LIFE OF THE LAW. She spoke at the TEDX GOWANUS event in Brooklyn in 2014, presenting for the first time on the subject of her family gene and the deadly illness to which it leads. Exclusive to just fourteen people, the story of the gene is told in her new book, THE FAMILY GENE (Ecco, 2017). She lives in Brooklyn with her husband and two dogs.
Thank you for joining us, Jos!
THE FAMILY GENE
When Joselin Linder was in her twenties her legs suddenly started to swell. Struggling to find an explanation for her unusual condition, Joselin compared the medical chart of her father—who had died from a mysterious disease, ten years prior—with that of an uncle who had died under similarly strange circumstances. Delving further into the past, she discovered that her great-grandmother had displayed symptoms similar to hers before her death.
It took twenty years, the help of far-flung family, and world-class genetic researchers to confirm that fourteen of Joselin’s relatives carried something called a private mutation—meaning that they were the first known people to experience the baffling symptoms of a brand new genetic mutation.
A compelling chronicle of survival and perseverance, The Family Gene is an important story of a young woman reckoning with her mortality and her ethical obligations to herself, those close to her, those she’ll never know, and nothing short of society at large.
Let’s start from the beginning, your beginning.
What was your early childhood like? How did it shape who you’ve become?
I actually think I was incredibly fortunate as a kid. I was raised in a 2 parent, stable home – very loved, very cared for. I had a big sister and a dog. I had parents who paid attention to what I ate and how I spent my time. I actually think that solid foundation allowed me a relatively soft landing space after and during those many future catastrophes. And it helped me to keep my humor.
What did you want to be when you grew up?
I wanted to be a doctor like my father. Who are you calling a Daddy’s girl? Shut up.
What was your favorite toy?
I really liked dolls. I had a very big collection of dolls and stuffed animals, like ET could have gotten lost in my closet.
Where did your sense of humor come from?
My parents are both hilarious. But I also grew up with outstandingly funny best friends. I’m the least funny one. But I write funnier – I should get that ironed on a t-shirt.
What helps when you’re not feeling so humorous?
I enjoy wine, or whathaveyou – like literally, whatever you have, I’ll take.
Favorite junk food?
Deep fry me anything.
Terminator 3 (Yes, the one with Claire Danes, because they arrived at the same conclusion! It was brilliant! Like the machines still take over, even though there’s Internet now! Genius.)
What made you want to write THE FAMILY GENE? What do you hope it will accomplish?
I want to get help for those us living with the gene. That’s number one. When you have a rare disease the battle for resources and attention is brutal. So getting the story out there is key. It means hope for the 7 of us still living with the gene.
Secondly, I felt like genetics are still so hard to understand. But genetics are about to change how medicine is practiced, how we live our lives, how we interact with our planet. It’s so important that we ALL understand, even at the most basic levels what genes are – what they can do.
I really tried to keep the science in the book accessible – Like I named the base pairs that form in DNA, “Brangelina” and “Beyonjay” because I felt like it was easier to absorb in my brain than “adenine/thymine” and “cytosine/guanine” – those names didn’t make the final cut, but what I’m trying to say is, I did the best I could to make the science go into my brain and then come onto the page in the simplest and most entertaining language I could find.
‘Autobiography slash biography slash medical exploration’ doesn’t smack of suspense or light-hearted wit, yet THE FAMILY GENE has quite bit of both. Is that a representation of how it feels to live through it?
I think it’s really hard to take in a story that is filled with self-pity or takes itself too seriously. I am not a scientists and I am not a memoirist – so I had to be a little self-aware in my writing. But I also feel like for me – a spoonful of sociopathic humor can really help you write about the most horrible moments in your life.
When your father died in his late forties, his organs were all but fused together. He was both starved and bloated by a creamy white liquid. But before that he was an energetic and athletic physician. His sole goal through to the end was to beat whatever was making him so ill. You and your sister have been diagnosed with the same unidentified, fatal genetic anomaly. What is your goal?
Our goal is also to survive, but luckily, women get the genes differently than men. It doesn’t ravage our bodies as quickly or – typically – as horribly. But we saw our grandmother watch two of her children die of a gene she passed to them. Both of her boys died before her. My sister and I knew we had the gene and we had an obligation to future children not to pass it.
Luckily, a team of geneticists studying me, and my family, were able to map our gene in 2003. So in 2008, when my sister and her husband were ready to have children, embryos could be selected for implantation that did not carry our gene! Nine months later my niece Addison and nephew Billy were born. They are amazing. Billy was named after my father who died of the gene, so I love to tell people he has my dad’s name, but not the gene that killed him.
In fact, so far, of the 23 children in the 6th generation of my family since patient zero (my great-great grandmother) NOT ONE OF THEM HAS THE FAMILY GENE!
I am very proud of this.
What is eugenics? How is it different than genetics?
Eugenics a bad word – as a “study” it is outdated and wildly, repeatedly debunked – Eugenics generally implies that some genes are superior to others. Like boys, born XY are “better” than girls born XX. Or “race” (which actually CANNOT be proven at a genetic level) is something you can quantify genetically as good or bad or something in between.
Meanwhile, genetics is the study of genes – as they are. For example, DNA is a recipe for a living thing. DNA doesn’t actually make anything. It just exists, like the page in the book that says “you” and has a picture of you, but isn’t actually you. Ribosomes read DNA (there’s a step or two missing here but we are not trying to actually make you) and then (again skipping a few steps) the ribosomes start making the proteins that eventually makes up the you that was in the DNA recipe.
Studying that, the DNA, the ribosomes, the proteins, the tiniest parts of YOU – that’s genetics.
Your sister used a form of IVF to become pregnant with her twins wherein embryos are tested for disease and only the healthy ones implanted. There are those who balk at this procedure to weed out increased risks of disease (e.g., a gene mutation has been identified which predisposed a person to breast cancer) or adult-onset diseases like your family’s mutation. There are other who argue that entire diseases could be eliminated this way (e.g., Huntington’s). What are you thoughts?
Obviously I am very pro-IVF with pre-implantation genetic diagnosis (PGD) – Like I am a huge fan. Give me pom-poms and I’ll make up a cheer. It’s such a simple thing – a five-day-old fertilized egg is tested for the gene. If it doesn’t have it, it is implanted and hopefully grows into a baby. If it does, it is discarded. I’ve heard people say, “But what if that one you discarded would have been a great guy?” But I think that’s silly. It’s not really an argument in either direction. My niece and nephew who were born with this technology would probably say, “But if that `great-guy’ HAD been born, we wouldn’t have!”
Also, right now, gene EDITING is the new enormous upcoming technology on the block. Gene editing has the potential to change the genes of an embryo. Like you can probably add gills or a tail. I mean, you can probably make a huge mess with gene editing. Pretty soon people are going to be like, “Whatever happened to sweet, simple IVF with PGD? Bring that one back!”
What your family is going through is deeply personal, yet there are those who use your story for political fodder. What is it like for your personal life and struggles to be considered inbounds for public debate?
Thank you for this question. I think that’s the hardest part. But honestly our nation is so politically divided right now. We are politicizing insane things. I actually don’t understand why abortion is a political issue, but I understand that it is. But when you consider that abortion happens whether or not the government “allows it” – allowing it just makes it safer – then you can see, it isn’t political. It’s human. There are issues on the right that I think the left dismisses unfairly. And I think the right does the same. But there’s a lot of money in politics and the media right now so we all have to be very careful and thoughtful when we consume any information deemed “political.” And start by remembering we are all human beings, and so fundamentally our needs are the same.
How have the availability of your choices been affected by the legal system? Insurance industry?
So far, nothing has really changed. I am hopeful because I live in New York, as a freelancer, nothing will change too much. New York is a good place for health insurance. It has been for a while. It’s my sister in Ohio I am actually worried about. Let’s hope promises are kept and people – whether sick now, or sick in the future – are protected.
Many women struggle with infertility. The question of motherhood for you is additionally complex. You’ve decided, thus far, not to have children. Your sister has two children. At the time, she believed that the female X chromosome would counterbalance the mutation, and her health would follow in the steps of your 90-year-old grandmother. That hasn’t happened. Both of you continue to experience symptoms. Does this make you grateful that you did not have children or regret that you didn’t before you knew how the disease would progress?
I am not a person who regrets. I think this is a gift as much as a choice. But I tend to like my life. Having children is a hard enough decision when you can have a heavy night of drinking followed by an accidental pregnancy. But to have to make every decision, to go for IVF, to create a baby and then give birth, especially when you have a lot of health issues to consider, it wasn’t the hardest choice for me to decide not to have children. Sometimes I worry I’ll regret it, but that’s not the same as regretting it. I worry my husband will resent me someday. But so far he seems certain our lives are exactly how he wants them (minus my inability to wash a dish ever).
I am not grateful not to have kids, but I am happy with my life. So I guess they are not mutually exclusive! I also have amazing nieces and nephews (my sister’s and my husband’s sister’s), close relationships with little cousins and friends kids, and really good dogs, which probably helps to fill voids.
Dr. Christine Seidman, Harvard genetics professor and director of the Cardiovascular Genetics Center and Brigham and Women’s Hospital, first suspected your family’s mutation may be related to a heart murmur which it was. (The Seidman Lab also had a hand in identifying the gene that causes sudden death heart attacks in young athletes.) What is the status of her hope to correct the mutation?
Dr. Kricket, as I call her in the book, seems confident it is possible we will find a cure in our lifetime. Right now she’s growing a liver out of my blood. I think if anyone can figure this out, it’s her.
You’ve published in several genres and for high profile publications. You’re a renowned public speaker. You’ve been a featured guest on television and radio talk shows. What’s next? What else do you want to do?
I either want to make a TV show out of the book, like “This is Us” but with five additional generations and a lot of DNA animation, or I want to publish a sci-fi book that is basically Twilight with aliens. Seriously.
How can we help you? Review the book? Is there a foundation or other organization to support? What else?
Reviews are wonderful and word of mouth –And if you know anyone who knows a lot about the portal vein, give me a call.
Also, support any rare disease foundation. There are so many amazing ones. A condition called Sanfilippo’s syndrome is on the verge of amazing breakthroughs. My friend Bo’s daughter Tess has a rare disease that is just now really coming to light. Follow his family’s progress and offer support where you can. I started a gofundme for our rare disease for which I just used mine and my dad’s last name – “Linder disease” – as a placeholder until the Seidman Lab names it for real!
New York – Autumn or Spring?
Both! And Summer and Winter!! Oh I love me some seasons.
New York – Pizza or Bagel?
Pizza in between a sliced bagel –
Mets or Yankees?
Is that football? Hockey? I’m not sure I understand the question…
Cab or Subway?
Thank you, Jos, for taking the time to answer our questions. We will be supporting you forever more. 5-Star Rating and review for THE FAMILY GENE by the interviewer on Goodreads, Amazon, and the Litsy app.
Praise for THE FAMILY GENE –
“Linder not only knows how to tell a compelling story but also how to use numbers to good effect and how to spell out complicated concepts… Her brutal honesty contributes to the power of this thoroughly researched chronicle of the quest to conquer chromosomal abnormalities.” — Booklist, Starred Review
“Moving and deft. . . . Linder expertly balances the serious and often tragic with an indefatigable charm and warmth. This book is a wonderful blend of reflections on coming of age, medicine, and what it means to live against all odds.” — Publishers Weekly (Starred Review)
“Linder’s narrative is a combination of a fascinating medical detective story and an absorbing, powerfully written family chronicle. . . . She successfully integrates cutting-edge genetic research into her personal quest. — Kirkus
“[Linder] views her future with measured optimism…Genealogists and readers interested in popular medicine may find this book more relatable than Alice Wexler’s Mapping Fate.” — Library Journal
“The science is enthralling, the narrative’s race-against-the-clock tension is nail-biting, but at its core, this book is about the remarkable bond of family—and curse and gift of inheritance.” — Susannah Cahalan, author of Brain on Fire
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MM Finck is a writer, essayist, and offers query letter coaching and opening pages editing as The Query Quill. She oversees WWWB’s Interviews and Agents’ Corner segments. Her women’s fiction is represented by Katie Shea Boutillier of the Donald Maass Literary Agency. She is a member of the Women’s Fiction Writers Association and the contest chair for the Women’s Fiction Writers Association 2016 Rising Star writing contest for unpublished authors.
Her work has appeared in national and regional publications, including skirt! magazine. When she isn’t editing her novel, #LOVEIN140, you can find her belting out Broadway tunes (off key and with the wrong words), cheering herself hoarse over a soccer match (USWNT!), learning to play piano (truly pitifully), building or fixing household things, and trying to squeeze more than twenty-four hours out of every day. She is active on Facebook, Twitter, Goodreads, and Litsy (@MMF). Say hi! http://www.mmfinck.com