Karen Louise Hill, my younger sister by one year and three days, died on March 27, at the age of 56, with her rich but challenging life unfinished. She died with an essay and a novel, both exploring the mental illness with which she had lived for 30 years, still circulating in search of publishers.

Related: Excerpt from On Being Crazy by Karen Hill

I know how hard it has been for me to finish my own books. But I can’t truly know how difficult it must have been for Karen to finish her novel, Café Babanussa, given that she was beset by periodic psychiatric breakdowns during the years she worked on it. In periods when she reduced or entirely ceased taking her antipsychotic medications, she slipped gradually into debilitating illness. When she took her meds faithfully, she hated the results: they numbed her mind, hampered her creativity and made her gain weight.

I imagine that writing, for Karen, must have felt like hauling a brick-laden wagon uphill. She had to calm her own mind to sit down and focus on her work, but the writing process stoked her anxieties. Still, she never complained about creating under the stress of her illness. Poems? Karen wrote dozens of them. Stories? Many of them, too. And then the novel.

Between all the written works, which remain mostly unpublished, Karen loved her daughter, Malaika, and her relatives, maintained her friendships, travelled when she could afford it to Cuba and Europe, gardened, baked pumpkin pies and Linzer tortes for family gatherings, and made hundreds of paintings and gift cards at the Creative Works Studio, a program on Gerrard St. for people living with mental illness or addictions.

On March 21, 2014, Karen was released on a weekend pass from the psychiatric ward at Sunnybrook hospital. Things were looking good on that day, but getting her hospitalized two weeks earlier had been a painful ordeal for her family.

On a late night in early March, when she had initially required hospitalization, Karen called 911 and was taken by ambulance to Sunnybrook. She was disoriented and paranoid. While waiting in the emergency area, she ripped out her IV unit and fled the hospital, on foot. It was a frigid winter night and she had no hat or mitts. Malaika and I got to the hospital an hour after she had arrived, but Karen had already taken off. I worried that she would suffer frostbite or wander into a forest and die of exposure, or that she would wander onto Bayview Ave. and be hit by a car. Malaika and I drove for more than an hour on nearby streets, looking for her, but we could not find her.

Finally, hours later, Karen turned up back in her flat in the Bain Co-operative Apartments. She had walked many kilometres home from the hospital. Later, she told me that although she had bus tokens in her pocket, she had been convinced that the bus drivers could read her mind and would not let her in the doors. Blood had been smeared everywhere in her apartment, with blood from the hand that she had cut by ripping out an IV unit.

Moments after I entered her apartment, the police showed up — wondering who on earth I was and why there was blood all over the walls. The officers heard me out and took her back to Sunnybrook. I spent the rest of the night with my sister in a locked hospital room until a psychiatrist showed up in the morning to interview and admit her. It was heartbreaking to witness her anguish: pacing constantly, unable to focus her eyes or to have a conversation. But at least she was safe.

At the very time she fled from Sunnybrook hospital, Karen had been trying to publish an autobiographical essay about living for decades with mental illness and about escaping the psychiatric wing of Toronto General Hospital several years earlier. In On Being Crazy, she touched upon her paranoia at the time of her first escape: “The head doctors are constantly trying to hypnotize me with their eyes again. Drain the information out of me. Can’t fight against it; they always win.”

My sister might have been temporarily crazy, but she knew how to sneak out of a psych ward. “I figured out that the easiest and most sensible thing to do would be to watch for a group of people exiting the ward and hide among them as they filed through the ward doors and onto the elevator. I got ready and an hour later that’s exactly what I did.”

And there you have my sister: mother, daughter, sister, friend, gardener, baker, painter, writer — and escape artist.

On March 21, after two weeks in the psych ward, Karen was finally stable. Her weekend pass from Sunnybrook was a test to see how she would cope back in her apartment, in her real life. On March 22, Karen went out to a restaurant to celebrate her return to health. During her meal, she choked and lost consciousness. She was taken by ambulance to St. Michael’s Hospital. She spent the next five days in a coma and on March 27 she died. We stayed with her in those final days and gathered around her when she took her final breaths in the very same room of the intensive care unit at St. Michael’s Hospital where our father, Daniel G. Hill III, had died 11 years earlier.

Bipolar disorder runs on both the maternal and paternal sides of our family, and Karen received the unlucky card among the three siblings. Karen showed no sign of illness until her mid-20s. After graduating with a BA from the University of Ottawa in 1979, Karen moved straight to Europe and set up in a coal-heated, walk-up flat in West Berlin, where she lived for a decade. In addition to English, she spoke French and German fluently, and acquitted herself playfully in Spanish, Italian and Portuguese. She travelled widely throughout Europe, worked as a secretary for the Max Planck Institute, and met and married a German man with whom she stayed for several years.

I used to love meeting my sister in Europe. In Paris, she left open the skylight window in our cheap hotel room with two single beds, and went out for a smoke and a drink. Then the rains came. One of the beds got soaked, so I made her take it. In a Spanish village called Arcos de la Frontera, I awoke at dawn to find Karen missing from our B&B room, so I stepped out to find her. She was next door in a bar, downing brandy and swapping stories with three Spanish men, and offering them German cigarettes. In Berlin, she introduced me to the working-class quarter called Wedding, and to the vagaries of heating a frigid apartment with a coal-fired furnace. “Careful,” she said one day as she headed out the door to work, “if you do it wrong, you’ll blow yourself up.”

On her good days in Berlin, nothing made Karen happier than sipping a coffee — preferably spiked with Kahlua — listening to Aretha Franklin or Ella Fitzgerald on the record player, making hummus or guacamole or plum cake, and turning her apartment into a dance floor when friends came over.

It was in Berlin that Karen suffered her first bout of mental illness. She loved the city for its cultural richness and hated it for its racial intolerance. She told me that she and her African or Afro-German friends often met with racial insults in the streets of Berlin. Berlin is the setting for her autobiographical novel, Café Babanussa. The novel explores the life of a young woman of mixed, black-and-white identity, finding herself in a community of African ex-patriots and refugees in Berlin, and also suffering from mental illness.

Since my childhood, I had seen the illness strike people on both sides of my family, but I had never expected or imagined that bipolar disorder would capture my own sister. By the time I arrived in Germany, Karen was so far gone that she barely recognized me. That first time, it took two months before she was released from the hospital. Later, Karen began to write about her experiences in Germany and elsewhere in Europe — not just her illness, but her work, lovers, cultural interests and friends. But after that first episode of illness came many others, usually interspersed with a year or two of functioning normally.

Karen and her husband divorced, but she continued to stay in Berlin. Karen became involved with an artist from Sudan, and although that relationship did not work out, it gave her the love of her life: her daughter, Malaika Hill.

Karen moved back to Canada in 1989, and gave birth that year to Malaika. She raised Malaika as a single mother. Malaika credits her mother for playing the roles of both mother and father. For some years, Karen worked for the City of Toronto, and oversaw ESL classes for the Toronto District School Board but eventually the illness progressed and she became unable to work.

Loading... Loading... Loading... Loading... Loading... Loading...

She lived in poverty, on meagre monthly payments from the Ontario Disability Support Program, and we in the family also assisted her. At the Creative Works Studio, she painted, drew and created multimedia art. She also signed up for writing courses and was mentored at Humber’s School for Writers. I also read and commented on her work and encouraged her, as did my brother, Dan Hill, and our mother, Donna Hill.

Karen strove for years to publish her work. Her poem “What is My Culture?” appeared in the literary anthology Other Tongues: Mixed Race Women Speak Out (Inanna Publications, 2010) and the poem “A Breath of You” forms part of a curated exhibit in the Ontario Archives about the life of our late father, Daniel G. Hill (bit.ly/1fAl2hg). However, her novel and essay are still in search of publishing homes.

Posthumous publication is a sad thing. It is depressing to think of a writer putting years into her work, and not being around to see it ushered into the world of print. But it will be beautiful if Karen’s words reach other readers, especially those who care about mixed-race identity issues, about stories of young Canadians sowing their wild oats abroad, and about people who live and work with mental illness. But a writer can only be around for so many years. If the written story is especially powerful, it is bound to outlive the writer. In Karen’s case, the outliving began one or two acts too soon.

I miss my sister. I miss her so much that it aches. Her departure leaves me feeling compassion for all the other people who go on living and loving after losing children, partners, parents — often far too early. She has left us, but her stories have not.