As she lay dying: A memoir

Of three gifted siblings, one inherited the family bipolar gene. Dan Hill on the loss of a beloved sister.

Courtesy of the Hill family

Dan with mother, Donna, father, Daniel Sr., Karen, and Lawrence, 1976. Courtesy of the Hill family

On March 23, 2014, I was in Nashville, Tenn., writing songs with my friend, multiple Grammy Award winner Keith Stegall. We were writing in hopes of placing some of our songs on the new Alan Jackson album. Keith discovered Alan, who is now a country music superstar, his worldwide record sales surpassing 70 million albums. Keith and I had two great days of writing behind us. At 12:30 a.m., I returned to my room. I felt good. I’m no longer a drinker, and my mind was clear, but between eight intense miles of hill running and banging out three songs with Keith, my body cried out for sleep. Usually I don’t check emails before I go to bed. That night, I broke my rule. One email; from my younger brother, Lawrence.

Our baby sister, Karen, had been out for dinner with her 24-year-old daughter, Malaika, and Malaika’s close friend, Cito.

I had spoken with Karen six hours earlier. Her 48-hour pass from the Sunnybrook psychiatric facility in Toronto was almost over. Considering she’d been in lockdown (like jail, only instead of guards toting guns, psych patients have nurses and shrinks toting notepads), Karen sounded relatively happy. Guardedly hopeful. Her litany of meds was kicking in. In 72 hours, she would be able to return home. So I expected my brother’s email to be positive. Instead, what flashed on my screen was the most devastating note I’d ever read.

When Karen was eating, some food caught in her throat. All normal medical procedures to dislodge the food didn’t work. Karen suffered massive seizures and a heart attack, lost consciousness and was now in a coma at St. Michael’s Hospital. Larry, my only brother and as gifted a novelist as any I’ve ever come across, saved the worst news for the end: Karen had gone without oxygen to her brain for five minutes, maybe 10. I immediately knew what my brother knew. Our baby sister, our only sister, would not survive this. She was going to die.

These were the first thoughts that flooded my brain:

1) Back in June 2003, I was in the same hotel, in the same city, writing with the same co-writer for the same artist, Alan Jackson. At 12:30 that night, wobbly from too much red wine, I’d opened up an email from Larry:I had to catch the next flight back to Toronto. Because in approximately 24 hours the doctors will remove Dad’s intubation tube.” Now, almost 11 years later, as March 2014 counted down its final days, the unthinkable was about to happen. Karen would breathe her final breath in the same ICU room, on the same floor, in the same hospital as Dad.

2) Horribly ironic, because, as a little girl, Karen worshipped Dad so much that she would copy everything he did.

3) Not so ironic: My dad’s final words to me before he slipped into a coma were: “Promise me, son, that you’ll take care of your mother. And your sister.”

4) My profound relief, as I paced round my hotel room: Thank God, Dad was not alive. This news would have crushed him.

5) How was I going to break this news to my wife, Bev, and to our son, David, both of whom loved Karen fiercely? And what about Mom, who is also bipolar? Did she know?

6) How was Malaika? Beyond being traumatized and shattered. Cito, do not, even for a second, let Malaika out of your sight.

My dad was one of four children. His three siblings were female, and he loved and protected them. My dad’s father, a Methodist minister with a Ph.D., travelled across America, ministering in small towns. So Dad grew up with four females, worshipping his mother, May. She taught him how to cook, garden, sew, iron, read and write, all the while gently yet sternly drilling into him the importance of surviving, and thriving, in a racist world through being smart. Very smart. May taught Dad how to love, to be compassionate and kind, to be observant and, yes, when situations called for it, to be tough, to never back down when confronted with a bully, a racist, or someone just downright mean. And yet May taught her only son without lecturing. In the late 1920s, during the Great Depression, Dad, aged five, would stand alongside his mother, slapping together peanut butter sandwiches, handing them out to starving families, who showed up, daily, at their doorstep.

 

Growing up surrounded by intelligent, confident females, my father understood what most males never understand. That females were smarter and tougher than males. In 1953, Dad married a woman smarter and ultimately tougher than him. My mom.

In 1953, Mom and Dad, living in Toronto, discovered, to their shock, that Mom was expecting. I was born in June 1954. My parents, thrilled, showered me with love. Still, Dad was quietly disappointed. He’d wanted a girl. In 1957, my brother, Larry, was born. My parents were overjoyed. But damn, I imagine Dad thinking: still no girl. One year and three days later, Karen came into this world. I still remember the nonstop celebrations that rocked our Newmarket home. Armed with Count Basie records, Duke Ellington and a sprinkling of Sinatra, my parents partied like rock stars, out-singing and out-dancing all their friends and neighbours.

Dad loved and cherished Karen. And, unlike Larry and me, Karen was absolutely adorable. At two years old, she would stumble into the arms of anyone entering our home, her small brown arms outstretched, pigtails flying, giving and exchanging hugs and kisses. Larry and I were wary, caught up in our own hyper-energetic force field. We were already lost in some frenetic, wildly competitive achievement mode. I memorized every song from every record my parents possessed. Larry made up stories.

An objective observer might say that Larry and I, preternaturally confident, were shot into the world from twin cannons. It helped that our father was famous in his field, brilliant, charismatic and unapologetically black. Blessed with Mom and Dad’s remarkable genes, raised on big words and big, iconoclastic attitudes, Larry and I, before entering kindergarten, knew who we were, what we wanted, and how we would get there.

Karen was brainy as could be, but she was also almost impossibly kind. By age four, she would astonish our parents’ friends by singing Hello Dolly, channelling Louis Armstrong so precisely, it weirded me out. Dad nicknamed her “Little Lena” (as in, jazz great Lena Horne). Unlike her older brothers, Karen loved being social, reaching out for and demanding human connection. But Karen gave back as much as she received, when it came to any and all manner of human connection. In thatsense, she was far healthier than Larry and I.

A random cocktail of luck and chance determines what child inherits which set of genes. Larry and I inherited Dad and Granddad’s diabetes gene; all four of us were diagnosed with diabetes at the same age: 40. Karen, like half of our relatives on each of our parents’ sides, inherited the bipolar, schizophrenic gene. But at least Karen was not diagnosed with, nor did she exhibit any signs of, being bipolar, till she was 26.

March 24-27, 2014

My return flight to Toronto lands around 10:30 p.m. Just as in 2003, I taxied straight from the airport to St. Mike’s. While Karen, like Dad, lay in an induced coma in the ICU, I leaned over her, gently stroking her forehead, singing softly into her ear, and forcing myself, as I wept, to conjure up the times in her life when she was happy. Karen was a happy baby, a happy infant. She was loved so deeply, and loved back so completely that I would, at age six, stare at her uncomprehendingly. Who is this person? Can this “love bug” (Dad’s nickname for Karen) possibly be my sister?

Based on Dad’s letters to his parents in the early ’60s, my parents fretted far more over Larry’s and my neuroses, considering Karen to be far more well-adjusted. Larry and I were so obnoxiously competitive with one another that it drove our parents bonkers. Was Jesse Owens or Joe Louis the greatest black athlete? Who got the Yogi Bear spoon vs. the Huckleberry Hound spoon for breakfast? When I was 22 and Larry 20, we raced, brother against brother, over 400 m, both armed with our own stopwatch-wielding private coaches. I had trash-talked my brother so badly while walking to the track, Larry’s coach ordered him to ignore me. Who won? Does it matter? To my brother and me, these battles were life and death. Our sister viewed us with the same bafflement as we viewed her. How can these yapping word-slinging maniacs possibly be my brothers?

Over the five hellish days and nights my sister lay unconscious, my brother, our wives, my mom and Malaika carefully rotated our visits so there’d be no overlap. We had that part down. Larry and I had had decades of practice visiting various family members struck down by mental illness, in hospitals, in our homes, some carried out on stretchers, ambulances waiting in our driveway. Lunch hour, Grade 3, I see my Aunt Margaret wheeled away. “Sleeping pills,” I hear someone whisper.

Certainly, Larry and I are well-schooled at prying information out of medical experts. We’ve spent our lives watching people from a safe remove. My brother’s years as a reporter for the Globe and Mail and the Winnipeg Free Press taught him how to find out anything about anybody. What must my brother have been thinking and feeling and saying to Karen during his visits? The same damn thing I was thinking.

During the days, the nights that I spent with Karen, I asked myself: When was Karen truly happy? No point in revisiting all the times she was immobilized with depression and loneliness.

From the early ’60s till the mid-’70s, Larry and I flourished. Those years were tougher for Karen. Some of the stuff I saw girls pull on other girls still freezes my blood. Looking back at it now, I feel a searing shame that I didn’t do a better job protecting my sister. Instead, I turned to the comfort of my guitar, my songs and my running. Larry, educated downtown at the University of Toronto Schools, saw less of Don Mills than his siblings. But no one dared pull anything on Karen when he was around.

From the day she was born until the night she died, Karen was far closer to our parents than Larry and I. In her 56 years, she never once quarrelled or bickered with Mom. As a teenager, Karen delighted in nailing Dad on his maddening double standards. Usually it was Mom and Karen versus Dad. I’d strum my Martin D35 and enjoy the show. Mom and Karen were always right, but Dad’s bobbing and weaving comebacks were so damned funny that everyone would collapse, breathless with laughter.

When Karen left Don Mills, heading off to the University of Ottawa, she was galvanized. Miles removed from a loving but overbearing father, and outside the shadow of her two brothers—Larry and I were already well on our way to fame in our respective fields—Karen came alive, found her voice, nailed her courses, all the while partying and reading. I can’t think of two other people who lapped up literature with the hunger of my siblings, except perhaps Mom, who turned the three of us onto CanLit: Alice Munro, Mordecai Richler, Margaret Laurence, et al. (Decades later, Mom directly, and Karen more subtly, could dissect a Barack Obama speech with the same precision with which they could edit my brother’s books or my soon-to-be-published articles.) While in Ottawa, Karen befriended female students from different cultures who were bright, curious, contrarian and, best of all, fun. To be sure, she beat the hell out of Larry and me when it came to having fun.

Travelling through Europe after graduating from university in 1979, Karen settled down in West Berlin, feeling this whoosh of relief. Ahhh, the early ’80s; no one in Berlin knew of our father’s towering achievements in black history and human rights. And if anyone in this nonconformist gaggle of artists knew who Dan Hill was, they were kind enough not to hold that against Karen.

For my sister, an avowed sensualist, devouring food, booze, cigarettes, art, music, sex in equal measure, West Berlin (once you scratched beneath its punctilious veneer) was the perfect playground. But everything changed after mental illness started nipping at Karen’s heels in 1984. Following a visit my parents made to Berlin, and then one from Larry, I arrived at the tail end of Karen’s first “breakdown,” and stayed with her for three weeks in February 1985. After two months of unspeakable suffering, Karen had recovered enough to outdebate her husband and me on everything from politics to literature to music. Shocked as I was by her occasional lapses into mania followed by psychosis, counterpointed by her inconsolable sadness, I was struck by her resilience and by how braver my sister was when confronted with Berlin’s racism and the people who glared at us with hate in their eyes. If her next 30 years resembled a bewildering, hellacious emotional roller coaster, she held on like a warrior, fighting the manic peaks and sudden drops with every fibre of her being.

Karen returned home in 1989, pregnant with her first (and only) child. She opted for a home birth, at my wife’s and my house, in our bedroom. Dad, convinced that home birth was for kooks, boycotted the birth. Mom, Bev, a skilled midwife called Jay and I (close to fainting) stood by, helping as best we could. Eventually, Dad buckled—he couldn’t bear to be left out—dashing over to cheer Karen on. There were complications, so Karen was moved to a hospital. Malaika tumbled into this world in May, six months after our son, David, was born.

Karen was an exceptional mother. I still can’t fathom how Karen, a single parent, bedevilled by bouts of awful illness, poverty and loneliness, raised such a kind, intelligent and accomplished daughter. I can’t imagine what it must have felt like for Karen, the most affectionate and warmest of the three of us, to have marched through the year 2000 on, with no partner. She never complained. (“What if you and Larry had never found a loving partner?” Mom asked me shortly after Karen’s death. “Who’s to say the two of you wouldn’t have followed Karen’s path?”)

Karen was hospitalized with bipolar/schizophrenic breakdowns many times. The Hill family did the best we could to help, and Malaika usually moved in with my family. Malaika was never a burden—she lit up our lives. Indeed, my wife, son and I were the lucky ones. My parents visited Karen faithfully, talking to psychiatrists, social workers, and participating, along with Larry or me, in group meetings with a range of hospital staff. Mom and Dad loved their daughter unflinchingly. Larry and I took turns, faithfully reporting to the other how Karen (and our parents) were doing. We coped, talking as brothers do, then turning to our respective work—music, writing, extreme exercise—to find some measure of healing. Has all this family illness left us scarred? Well, every family has its scars, its secrets, its miracles and tragedies.

And creativity is not the magic pill that saves us from despair. The last time I saw Karen conscious (the evening of March 16, as we paced the hallways of Sunnybrook’s psychiatric lockdown unit), she’d told me that writing her last essay, which revolved around her breakdown in 2011, was one of the things that tipped her over the edge.

Nevertheless, Karen continued to write and paint during much of her last 30 years, through illness and through health. “Hi there, brother,” she’d always say, whenever we caught up on the phone. Our conversations usually centred on concerns that Larry was working too hard and how Mom was doing. Every Saturday, Karen would take public transit to Mom’s, cook dinner, sleep over, and have breakfast waiting for her Sunday morning. They’d lounge around, listen to jazz, then stroll through Edwards Gardens.

2:50 p.m., March 27

The medical team at St. Mike’s removes Karen’s life-sustaining apparatus. Her living will, which my wife, Bev (a lawyer), had helped draft in 1996, was unequivocal as to how we should proceed. Except. Hills have powerful hearts; Karen was in no rush to go anywhere. I could never gauge, as the hours dragged on, whom I felt the worse for. Malaika? Karen? My mother? After a few hours, Mom couldn’t take it any longer. How she’d remained so strong for so long is beyond explanation. Larry and I (or Bev or Miranda, I can’t recall) decided that one of us had to get Mom out of St. Mike’s and back home. “Larry,” I say, “You should go.” Larry takes the braver route, insisting I go and he stay.

The minute we’re in the cab, Mom calms down. Back in her house, Mom and I kick back and talk. Mom asks me whether I think the sexual gyrations of next-to-naked female dancers backing up the pop superstars on MuchMusic detract from the song. Flabbergasted that Mom watches Justin Timberlake, I answer, “No. If the song sucks, the gyrations distract the viewer from its weaknesses.”

Talk turns to the doomed Malaysian Airlines flight out of Kuala Lumpur, and all the times I’ve flown out of there. “The scariest part,” I say, “is that no one knows what happened to that plane. Because everyone needs to have a reason, a tidy explanation for all the horrifying stuff that happens in the world.”

Mom agrees. We both know we’re not talking about that doomed flight. We’re talking about Karen. Meanwhile, Mom’s phone rings constantly. Every hour, Larry or Bev: “How’s Mom?” they ask. “Mom’s fine. If anything, she’s calming me down. How’s Karen, and Malaika?” The daughter of Mom’s twin sister calls. “What’s wrong with your mom?” my cousin demands. “She never bothered to tell my mom about Karen till today, five days after the accident.”

“Hey,” I say, knowing my cousin’s heartbroken, “you’re the psychiatrist, I’m the high school dropout. Do I really need to explain Mom’s behaviour to you?”

“Yes,” she says. So I do.

9:30 p.m. Gotta get back to the hospital. Yes, Mom is grieving, but everyone grieves differently. She is smashed to bits on the inside, but she is cool as a cucumber on the outside. “You guys are doing all the crying for me,” she explains. I say goodbye, open the front door and start walking to the taxi. “I’m coming,” Mom blurts out. This macabre death watch could go on for days. Snuggled close to me in the back seat, Mom reaches for my hand. Her fingers are shaking. No, my fingers are shaking.

10:15 p.m. Mom and I get to the ICU, joining Malaika, Larry, Miranda and Bev, who are in a tight semicircle, taking turns, whispering to Karen, stroking whatever bare patch of soft brown skin that’s exposed. Mom purposely walks over to Karen and strokes her forearm and then she leans in close, inches from my sister’s ear, and sings a song that she used to sing to Karen, Larry and me when we were little. When it was time for us to come home, after the streetlights had turned on. Mom’s voice floats, dreamlike and pure:

Karen, where are you? Karen, come home.

Karen, your momma’s here. Karen, Larry’s here. Karen, Danny’s here.

Karen, where are you? Karen, come home . . .

Tears are streaming down my face. Someone offers me a Kleenex. I refuse. My tears are for my baby sister. To wipe them from my face would be disrespectful.

10:18 p.m. Karen dies. She was waiting for Mom. To say goodbye. Waiting for mom. To give her permission to die. It was the most beautiful thing I’d ever seen. It was the saddest moment of my life.

Postscript, 12:00 a.m. Malaika and her friend Cito move in with us for 96 hours. Each evening, I tiptoe into my basement recording studio, which borders Malaika’s bedroom, and hear her cry. Each morning, I return to my studio, to the sound of Malaika weeping.

The night after Karen dies, Malaika, her friends, Bev and I all play guitar and piano, singing songs. I take requests. Bob Marley? Sure. The Beatles? No problem. Malaika requests some of my songs, the ones Karen loved. Struggling through them, I quickly stoop to a hoary parlour trick; how the same four chords are used in about 100 hit songs. I clownishly demonstrate, darting from U2 to Miley Cyrus to Marley to Lady Gaga’s Paparazzi, closing with Elton John’s Can You Feel the Love Tonight. Corny as this stunt is, Malaika and her friends love it. Again, they demand. How do Malaika and her friends know all the words to songs like Let it Be and With or Without You? Everyone’s howling with laughter. And so, out of grieving and loss, that tiny sliver of healing begins.

Karen Hill’s autobiographical novel, Café Babanussa, will be released by Harper Collins in 2015.




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