In The Family Gene, Joseline Linder traces her family’s medical history to learn more about the deadly genetic mutation that killed her father and uncle, and seemed to be affecting her as well. It’s a moving and deeply personal story about grief, mortality, and the bonds that tie us together. Here is an excerpt of the first chapter of The Family Gene.
It began the summer after I turned fifteen in 1990, just after our parents took Hilary and me on a two-week trip to Israel. Our great-aunt, who had joined us on the trip, suffered a minor heart attack. Our mother stayed behind to care for her while Hilary and I flew home to Columbus with our dad.
While my father was napping away his jet lag upstairs, Hilary and I set ourselves up in the basement to watch Dirty Dancing for the millionth time on our new VCR. As Johnny lifted a dripping white-T-shirt-wearing Baby powerfully over his head in the lake, a loud series of thuds echoed down the basement stairs.
Hilary jumped up first. She was a year and a half older than me and nearly seventeen. She took the stairs two at a time out of the basement, her long athletic legs confident as she raced around the corner to a second set of stairs up to the second floor. I tiptoed behind. Hilary landed next to our father’s head at the top of the stairway. His eyes blinked, glazed with confusion. Blood dripped from above his forehead to his cheek, forming a rivulet through his dark hair.
“Come here and stay with him,” my sister ordered.
“Where are you going?” I called up from where I stood at the bottom of the stairs.
“I’m calling an ambulance,” she answered. “Get up here.”
My father was on his stomach at the top of the stairway with his head near-tangled in the metal bars of the banister. That banister had kept him from falling headfirst onto the stone-tile floor below, but also gashed open his scalp. I approached him carefully, winding my way up around the curve in the steps.
“Get him a towel,” Hilary called while explaining the situation to 911. “Daddy! Are you okay?” she shouted.
He was sitting up now. I fumbled a towel off the rack in the nearby bathroom I shared with my sister.
“Yes,” he answered quietly. I watched awareness settle over him. He suddenly focused on my face, no longer gazing out vaguely at nothing in the distance. Slowly he knitted his brow in an expression of absolute confusion, or was it disgust? At first I wasn’t sure what was going through his head. For all I knew, he was having a stroke.
Then it dawned on me. I was hysterical. My now-sober father was trying to assess not just his own medical state, but mine too. I hadn’t noticed earlier since all I could hear was the thumping silence of residual panic born solely of the possibility that my father had been in mortal danger.
My dad rolled his eyes and tossed the towel I’d given him back at me, presumably so I could wipe the tears that were pouring down my own face. Hilary returned and helped our father to his feet. He was composed enough to put himself back to bed, order us to cancel the ambulance, and request a glass of water. Meanwhile, I went to the bathroom and took several deep breaths.
An alarm had been sounded, but right then it was unclear what it foretold—or that it even had anything to foretell. We were not a family that routinely dealt with catastrophe. We lived in Ohio.
My dad always liked watching thunderstorms. Once we had all been sitting on our front porch watching a particularly wild storm when lightning struck our neighbors’ house across the street. I remember the electricity tickling the tiny hairs on my face as sparks flew off their roof. We went inside and called them in time for a fire truck to come and contain the fire to the attic. We were heroes that day, but really it’s just what we were good at. It’s where we excelled: watching lightning strike other people’s houses.
* * *
We called our dad’s nearby office, where he worked as a physician. Hilary drove when we accompanied him to get seven stitches in his head.
As the nurse cleaned the wound, he explained that he had gotten up too fast from his nap. He explained that when we arrived home from the airport, he had taken a diuretic, or a water pill, designed to help reduce swelling from water weight. He was jet-lagged and otherwise tired from our two-week trip. As he stood up too quickly from his nap, he became disoriented and then finally fell at the top of the stairs.
My dad left out several important items that didn’t come to light until much later: two months before our trip to Israel, in April of 1990, he went to see Dr. Keith Pattison, a cardiologist, because of minor swelling in his ankles. Ankle edema, as it is known, is often linked to heart disease. My father had undergone open-heart surgery as an adolescent in the 1950s. Dr. Pattison offered no definite medical reasons for the swelling that day. His findings simply maintained that “the patient is not functionally impaired… and he retains superb exercise capacity.” In other words, my dad’s ankles might be swollen, but they didn’t seem to affect his heart or health.
Dr. Pattison more or less chalked up those puffy ankles to a familial trait. My dad’s mother and maternal aunt both experienced similar swelling and they were healthy. To my father’s mind, that was probably explanation enough. He seemed to have felt pretty good otherwise. He’d videotaped our whole trip and danced to klezmer music at least once.
Pressures on board the aircraft during the flight home from Israel likely impacted the pressures in his body, causing his ankle swelling to expand upward into his legs. Those cabin pressures are why plastic water bottles crinkle up in flight.
At the time I don’t recall knowing about that doctor’s visit or the swelling in my dad’s legs at least in part because I was a teenager. It certainly wasn’t of any concern in my day-to-day life. Instead, I went with the story my dad, his head wound now stitched, told us that day. He’d taken a water pill for swelling he’d gotten on the plane, which, at the time, sounded like something people sometimes got on planes, like summer colds and tomato juice. My dad seemed healthy. He was active and even athletic. From my perspective, after the stitches had been stitched, it truly seemed the worst was over. There was absolutely no reason to think otherwise.
From The Family Gene, Copyright © 2017 by Joselin Linder. Excerpted with permission from Ecco.
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 TedxGowanus 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 will be told in Linder’s new book, The Family Gene, coming out in 2017. She lives in Brooklyn with her husband and two dogs.