'The Family Gene' & One Woman's Mysterious Illness

As even the most seasoned memoirist will tell you, committing one’s family story to print is never easy. When that story involves a potentially-fatal genetic mutation — one that literally has you and other members of your family on a very real deadline — readers can only imagine the urgency of that telling increases exponentially. But this is exactly the kind of story that writer Joselin Linder set out to tell in her memoir, The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future, out from Ecco on March 14.

The Family Gene chronicles Linder’s journey towards discovering a diagnosis for the mysterious illness that led to the untimely death of her father and six other relatives — an illness that Linder herself began exhibiting symptoms of in her twenties. Delving deep into her family history (and into the medical charts of the relatives who succumbed to these strange, undiagnosed illnesses,) Linder’s explorations led her to a group of genetic researchers at the world-renowned Harvard Medical School. There, a team discovered what no doctors had thus far been able to: that Linder’s family is the founder population of a brand new genetic mutation — one that not only has profound and complex ramifications for Linder and her family, but also offers possible insights into the future of genomic medicine.

The Family Gene by Joselin Linder, $18.19, Amazon

Earlier this year, Linder took some time to share her experience with Bustle: the challenges of writing about family and illness, why writing this memoir is so important to her, and what she hopes readers — and science — will garner from her story.

“It’s such a battle to get your story out there, no matter who is telling it — and with rare diseases it is a battle for attention and resources,” says Linder, when asked how she initially decided to write The Family Gene. “When I realized that my sister and I were both getting sick from our gene, I knew we needed to fight for it.”

Being able to tell her own story in her own way was also important to Linder. A few years ago, when a prominent website published an article about her unique gene, Linder realized how critical it was to take control of the story herself. “It helped me to keep in mind that the story belonged to my family too — that I would be telling their stories,” Linder says. “I learned to be very careful and try to give them opportunities along the way to weigh in.”

“I am a person who sees a monster and wants to see what I’m dealing with, and try to figure it out. I think other members of my family want to look away. But I know that they are glad someone is sizing the thing up. They know it is also on their behalf,” Linder says.

"I am a person who sees a monster and wants to see what I’m dealing with, and try to figure it out."

“Our bodies may as well be something completely foreign," she adds. "So, this felt like an opportunity to take something that is foreign and do whatever I could to explain it. And also, learn to about it myself.”

One might imagine that for some people, too many facts about a genetic illness that currently has no cure (heck, one that only recently found its own name) might become overwhelming — especially to those who suffer from it. But for Linder and her family, who dwelt in mystery for so long, more information is, in many ways, empowering. “I think they [Linder’s family] mostly understand that it is to our benefit to give our gene — and the illness it causes — a voice. We knew so little, and now we know quite a bit. I hope and believe my research has given my whole family a better understanding of what happened to their loved ones and what could still happen (is happening) to more of us.”

For readers concerned that the medical jargon in The Family Gene might present a challenge to understanding Linder’s story, don’t be. Linder’s writing is highly accessible (even for a reader like me, whose scientific background began and ended with a 9th grade Biology class.)

“Presenting the science as simply as possible was so important to me,” explains Linder. “I felt it was so important to take the idea of genes and clarify what they are, and why they are such a big deal. When people talk about reading a genome: what does that mean? What are they reading? With modern technology, computers read the gene, but with our gene back in the 1990’s, someone had to slog through those proteins manually — looking at gobs of DNA and then zooming in and actually looking one by one at the proteins that makeup the genes, to see where ours had gone wrong.”

When people talk about reading a genome: what does that mean? What are they reading?

The use of computers isn’t the only technological advancement that has benefited the study of Linder’s family gene. Even over the last decade genetic testing and research has become much more accessible to everyone. “Five years ago it cost $10,000 to read a genome,” says Linder. “Today you can send away to 23andMe for $100. We are able to learn so much more now. And we are starting to be able to manipulate genes! So, it makes so much sense to learn about them if you can.”

But all the technology in the world can’t make the most difficult work of memoir writing any easier — that of mining intimate, sometimes painful, personal histories for meaning that will translate to a larger audience of readers. For example, reading through the medical histories of the people Linder’s family lost to the illness.

“I could read my great-uncle’s and great-grandmother’s medical charts and autopsy reports pretty easily,” Linder says. “But reading my dad’s was really hard. I felt like I did a lot of that reading in glances. I practically read those pages through my fingers covering my eyes. A glance here, a glance there. Sometimes I had to look something specific up, and I’d just skim so fast, I’d have to skim it multiple times. Someone suggested I have someone read it to me, or that I read it with a friend nearby. Or an enormous bottle of wine. But it was just really hard for me. My dad went through a lot.”

The influence of Linder’s father, Bill, can be seen throughout The Family Gene, in ways that are as moving as they are informative. The memoir opens with the moment Linder’s father first told Joselin — then 16-years-old — that he was ill, but he didn’t know what he was suffering from, or how to cure it. Just five years later, Bill Linder would pass away. In taking readers through her father’s illness, Linder is specific and vivid, detailing the kind of ailments most would associate with science fiction — except for Linder’s father, this was real life.

“But, I have to admit,” Linder says. “I had a really nice tailwind writing this book. It just came out of me. I like to think I had the help of my dad and other people who were lost because of this gene; they are trying to help those of us who are left — I know that’s a little cheesy. I also believe that rose quartz attracts love, and I will totally clean my room if my horoscope suggests it…” (Honestly, I’m right there with you on that.)

“I certainly hope people will think about the ways in which genes make us the same. In fact, at a genetic level, race doesn’t exist. Species barely exist! We are just slightly more than 1% different from chimps," she says.

“I certainly hope people will think about the ways in which genes make us the same."

Linder was also faced with the challenge of writing a story that was (and is) still ongoing. “A lot of the experiences in the book were happening in real time. For example, I had a panic attack, and I thought that I had to put it in the book, and also make more yams (when you read the book you’ll understand!). A lot of advances by the Seidman Lab were happening while I was writing, and I’d have to go back in and add to or even change some of the text with new breakthroughs.”

“I was so lucky because The Seidman Lab at Harvard University had put together a ton of research in the years following my father’s death,” explains Linder, “which included the medical charts and autopsy reports for my great-uncle from the 1960’s, my father in the 90’s and even my great-grandmother from the 1930’s through the 1950’s. So, I had a lot of information neatly organized in a binder I kept on my desk.”

“The newest advancement actually made the book — I was able to slip it into the last round of edits: the fact that the Seidman Lab is growing my liver (or liver cells) out of my blood cells. I think this is amazing. They are trying to prove their theory that all of our problems stem from compromised pressures in the portal veins of our livers. I am hopeful that additional breakthroughs are about to start rolling in! Hopefully I’ll be able to add more information to the paperback edition of the book.”

Throughout The Family Gene, Linder also takes readers through a series of difficult, coming-of-age moments that occurred throughout her twenties — the kinds of moments that most young women can relate to. But with the added strain of a healthcare crisis, readers might wonder if and how Linder’s genetic condition uniquely informed her twenties — perhaps if there was more urgency, more pressure, less willingness to make the kinds of mistakes healthy people let themselves make. But surprisingly, Linder says no.

“I don’t think I thought much about the gene at the time,” Linder explains. “Dr. Seidman often told my sister and I that we would not ever have specifically what our father had. My grandmother was in her 80’s and was healthy. She would tell us we would be old ladies like her. So, I think I was just trying to get through my twenties. I think the bigger impact stemmed from having had this family catastrophe just as I was leaving home [to attend college.] I write that a therapist called it “launch pad disintegration.” I have met a lot of people who lost parents in their teens and twenties who feel like they relate to that idea. She also said my truth wheel had shifted. I had this belief system that was lined up just so, and when my dad got sick and died, that system was upended. I was going to have to realign the wheel. That probably happens to a lot of us as we come into adulthood. We thought everything was this one thing, but it’s actually another.”

"I have met a lot of people who lost parents in their teens and twenties who feel like they relate to that idea. She also said my truth wheel had shifted. I had this belief system that was lined up just so, and when my dad got sick and died, that system was upended."

She adds: “I hope that someone out there will hear our story and stand up and say, “I know a ton about the portal vein of the liver — from where they think all of our problems stem — and I have a great solution for you all!"

Linder’s story, despite the unique genetic condition it centers around, is as universal as it is timely — and with U.S. healthcare locked in heated political debate, there’s no better time to learn from a story like Linder’s.

“I think rare diseases like ours are the bridges to individualized healthcare, which, as we enter a world of genomic medicine, we will all be getting — we should all be getting,” says Linder. “As far as health and healthcare goes, I hope the term “pre-existing conditions” goes away forever because we are all mortal which means we all have at least one.”

“I hope readers can have a larger conversation about genes, genetics, and genomics and not be afraid of it, because it’s going to change our world. The more of us paying attention, the more those changes will be for the better.”

When asked if she feels as sense of obligation to share her story, especially in a make-or-break moment in history for the American healthcare system, Linder says yes.

“I feel an obligation to humanity, to do what I can to stop this gene with my generation,” she says. “I feel an obligation to continue what my great-uncle started and my dad continued — to find out what we can about this gene and help the six of us still living with it. This sense of obligation is palpable. It would be much harder if it was just about me — seeking help on behalf of yourself is often harder than seeking it on behalf of others. But moving with purpose toward helping my sister and other family members feels deeply important in a good way.”

The Family Gene by Joselin Linder, $18.19, Amazon