In the midst of winter, I found there was, within me, an invincible summer.
– Albert Camus, Return to Tipasa
In May 2014, I learned that the publication of my debut novel, A Secret Music, would be delayed by twelve months. It was heartbreaking news, but not unusual coming from a small Canadian publisher who grooms first-time authors.
During the interim, I began what would become my second book, The Ghost Garden – a deep-in-the-trenches, creative non-fiction work about one woman’s forty-year struggle with schizophrenia. I spent my days researching. I even worked in the field: I volunteered at group homes, in the Douglas Hospital and at Nazareth House, a shelter for homeless men. I worked with those suffering from extreme psychosis, and many people shared the heart-breaking stories of their volcanic lives with me.
Then, finally, my box of books arrived this May. It was one of the most gratifying moments of my fledgling career as a writer. But as Claire Holden Rothman told me, “This is just the beginning, not the end.” Days later, I had my Montreal book launch, quickly followed by a Toronto launch and several library readings, book talks, radio interviews. Somehow the euphoria of my launch allowed me to cartwheel over a dire condition that was progressing in the most virulent way. My adrenaline overshadowed the symptoms that persisted all of May and June and July.
“Somehow the euphoria of my launch allowed me to cartwheel over a dire condition that was progressing in the most virulent way.”
I had migraines, fevers, night sweats and swollen lymph nodes. The radiologist who examined the CT scan pointed out a possible lymphoma that would need to be confirmed by neck biopsy. (Take that off your bucket list.) The results of the biopsy came back inconclusive. The lymph nodes were necrotic, meaning that all cells were dead. I was back to waiting and wondering what was wrong.
On August 1, my condition became acute and I was hospitalized for what turned out to be a month at the Jewish General Hospital. My fevers were raging around the clock, reaching over 40.5 degrees. I had biopsies, MRI and PET Scans, and a lumbar puncture. The good news was that I was cancer-free, but the diagnosis – a rare illness called adult-onset HLH – seemed just as ominous.
HLH is an autoimmune disease where the immune system goes psychotic. It never turns off. It hunts your body for tumors and bacteria and viruses, and when it finds nothing, it destroys your blood cells. (Think of a John Deere mower in your beautifully groomed garden, without a driver, operating in tenth gear.) The treatment protocol is aggressive. Chemotherapy. Corticosteroids. Antibiotics. Neupogen. I needed twenty-two blood transfusions before beginning chemo.
I began chemo on August 6 at 7 p.m. At 9 p.m. HLH launched its final spear. For seven hours I had convulsive chills, fevers, profuse sweating… but also, visions. I saw the cells that were dying. I saw the macrophages leaving the bone marrow. I saw my deceased father agonizing over me. When the fever finally ended, the gratitude I felt was overwhelming. I felt the weight of a thousand hands lift me back up.
“For seven hours I had convulsive chills, fevers, profuse sweating… but also, visions.”
As sick as I was, I saw my purpose as a writer. I’d written A Secret Music to heal a part of myself, but in The Ghost Garden, I saw an opportunity to enlighten a society where the everyday violence of movie theatre shootings and Greyhound bus beheadings had stigmatized the mentally unwell more than ever. I wanted to be a voice for those who had none. The Ghost Garden needed to be written. My ambition as a writer would be re-focused on a higher purpose. From that exact moment, I began my recovery with positivity and the certainty that my health would return.
I consider myself lucky. The diagnosis for HLH is most often missed until it’s too late. I was diagnosed within the two-month fatal cut-off. Writing is a passion, and faith is a grace note. Blissfully, all my passions are still intact.
Photo (headshot): Kathy Slamen