xx036 • You can sleep while I drive
January 23rd is the day my dad died. However old my daughter is, or will ever be, that’s how long my dad has been gone. I tried all week to write about his death; I cried a lot.
My daughter is almost 7.5 and going through a phase of litigating what is—or definitely IS NOT—fair. These injustice tantrums are thankfully infrequent, but I get it. Some things in life feel maddeningly unjust. This week I wrote through my own tantrum: why did my father have to die right as I was becoming one?
I like to joke that I, the apple, didn’t just fall close to the tree—I rolled down the trunk.
One spring morning in May 2015 I drove down to Virginia from my home in Brooklyn. My dad and I planned to meet at my mom’s house. We both got out of our cars… in matching outfits: linen button down shirts, drawstring shorts, flip flops. I was a few months away from being a dad myself and nailing the look.
In July my dad was back in the hospital for another surgery.
In August my daughter was born. A decidedly happier visit to a hospital. The days and weeks blurred together as we learned her rhythms. To give her and her mom the best chance of sleep, our daughter slept in a bassinet next to me. I would lay on my left side facing her, my right hand gently resting on her tiny, swaddled chest. I woke often to her rustling, or just to check that she was still breathing.
By December it was clear the cancer growing in my dad was unstoppable. He loved the holidays, this was going to be his last. He was being eaten alive by the mass in his abdomen which was feeding off the rest of his body. A few days after Christmas we went for a walk in the woods. His face has shrunk. My daughter rested in the baby carrier, head against my chest. My dad taught me how to frame a picture, as well as how to 'flirt with the lens'. There is a sweet series of shots of him from that day sitting by himself on the edge of a fountain, trying to find just the right pose as he struggled with his body’s ever-changing silhouette. It was important to him that we capture this first—and ultimately last—hike all together. In my favorite shot, his right hand rests on his snoozing granddaughter.
My father was sick for a long time. I don’t remember a time before knowing that my dad was somehow at-risk. From the emotional demons that he worked so hard to keep at bay, to the seemingly endless physical ailments and diagnoses. He was always in need of care.
This week my mother reminded me that his sicknesses started young—a case of scarlet fever at four almost delayed him from starting school. My first memory of his body breaking down was when his thyroid was removed. It was a big event at the time, but in minor in comparison of what was to come. My first year of college he had a heart attack during a routine medical test and ended up with a pacemaker. He spent the rest of my college years on disability for autonomic neuropathy and battling insurance companies. He relentlessly researched and tested ways to heal himself. He became so singularly focused that he self-published a book about his medical journey. It worked, he seemed to stabilize. And then on a trip to Costa Rica I checked my email from the local language school computer and read the news: the doctors had found liposarcoma, a very rare cancer made of fat cells.
Reviewing photos of my dad this week, I was struck by how many shots I took over the years of him sleeping. My dad was brilliant, charming, the life of every party—and in near constant pain. When he slept, I imagined him at peace.
I’m particularly fond of this photo of him from July 2009, a few months after they found the tumor. I flew in from San Francisco to be with him. He’s lying in a hammock, in a bright white tee, surrounded by green. He’s in his happy place, facing Lake Audubon from the backyard of their Reston home. He always loved being by the water. He has white Apple headphones in his ears and if you follow the wires down his body to the device in his pocket, you’ll see the white bandage on his arm from a doctor’s appointment.
Six weeks later, he’s sleeping in a hospital bed at Memorial Sloan Kettering Cancer Center in NYC.
He fought cancer, passionately. My dad threw himself at liposarcoma like he had with his career and the many health problems before. He became an expert in the science, the treatment options, the experimental research. He connected with other sarcoma patients across the country. He was an early-adopter of cloud storage and shared his meticulous notes with all of us. I still have a folder in Dropbox called "Bob Health."
My dad knew his best chances were to stay alive five years past diagnosis—he was determined to beat the odds—and did. He eked out a full six and a half years and packed it with as much life as possible. In 2011, he's radiant at his multiple 60th birthday parties. Later that summer, to celebrate being alive, he and I went on a yoga retreat in Tahoe. My dad took shirtless selfies on the snow-dusted mountain. In 2014, he and my step-dad got married in a 1920s-themed celebration by the beach. Looking back at the pictures, I'm delighted to remember how joyous he was between appointments and surgeries. Our family was so happy to dance together.
And then in 2015, he reached the last part of his road—right when my daughter's was beginning. I spent a lot of time in the hospital that year. Ultrasound appointments on the UWS; cancer appointments on the UES. After our daughter was born my dad was able to visit us in Brooklyn a couple times. Somehow he managed a brave face, holding his granddaughter even while knowing he wouldn't live to see her grow. Throughout the fall, into winter, I turned my lens on both of them. Newborns and cancer patients need a remarkable amount of sleep.
My larger-than-life father passed during a blizzard. Earlier in the day, with no options left, my dad emceed his last medical meeting. He gathered all the experts and asked to leave so he could die at home. He ran that last meeting like he was still managing a boardroom.
With the roads impassable, we hunkered down together. He could go home tomorrow. My brother, step-father, and I took turns bedside; the storm kept our step-brother and his girlfriend from joining. I desperately wanted to turn off the local news, some of my last memories are talking with him while a local reporter broadcast dramatically from the snow.
I took two photos of him that night. From the foot of his bed, he looks 20 years older. His eyes are closed, hands are on his head, the skin on his arms hangs loose. The alien in his abdomen, so large, threatens to burst out. The other picture I captured in the reflection of the window. The hard surfaces of the hospital machinery create a perfect vignette—my dad is encircled by tubes, wires, bags, ceiling panels, blinking lights. My step-father is bedside distracting himself with the TV. The room is dark save the industrial tube light on the wall above his bed. Serving as a key light, my dad's head is spotlit. He's leaning towards his husband, eyes closed. Back in Brooklyn, my daughter was sleeping peacefully. Her mother sent me a picture of the monitor; her face is turned to the camera.
The kind staff dragged two spare recliners into a storage room so that my brother and I could try and sleep. We made phone calls. We trudged through the storm to the empty hospital commissary for some food. We flipped through the box of worn VHS tapes. We drank from a bottle of whiskey we smuggled in. We closed our eyes.
Hours later, our step-father woke us to say our dad died in the night. At some point he struggled himself out of bed, headed towards the bathroom, and then collapsed for the last time. Even if his last minutes, he powered through.
Sunday night, exactly seven years since he died, my daughter was restless in her top bunk. She couldn’t quite get comfortable no matter the position. She tossed and turned, she tried putting her head on my shoulder. And then in a move reminiscent of when she was much younger, she crawled over and laid her whole body on top of me. Head on my chest, she wiggled to get cozy, she’s so much bigger now. I wrapped my arms around her and held her close. This was for her, it was for me. I sang softly in her ear and tapped her back: September, October, November, December, January… we always say she was six-months-old when Opa died. It was only five.
For years I sang my daughter to sleep every night—not with lullabies, but with the showtunes and lesbian love songs imprinted on my heart. She was raised on a steady diet of The Rainbow Connection, Newsies, Indigo Girls, and Melissa Etheridge.
Come on baby let's get out of this town
I got a full tank of gas with the top rolled down
There's a chill in my bones
I don't want to be left alone
So baby you can sleep while I drive
I'll pack my bag and load up my guitar
In my pocket I'll carry my harp
I got some money I saved
Enough to get underway
And baby you can sleep while I drive
I wrote some of this from a ballet-themed birthday party over the weekend—girls squealed and spun in their tutus. So much time has past. The rest I wrote while listening to the Broadway channel on SiriusXM.
Webber just came on…
Wishing you were somehow here again
Knowing we must say goodbye
Try to forgive, teach me to live
Give me the strength to try
No more memories, no more silent tears
No more gazing across the wasted years
Help me say goodbye
See you next week.
love, Kyle
Beautifully written. I learned so much about you and your dad!
Beautifully written! I learned a lot.