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“We’re all stories, in the end.” ― Steven Moffat

Three months after my daughter died, I received an email from a psychic in England, who told me, she’d been contacted by a little girl she believed was India. She said that India’s head hurt and that she was crying for her mummy, but with my consent she would speak to her. She said she didn’t want money that she just wanted to help. As I read the letter, I was gripped with panic. My child was in pain and I had to get to her.

Eventually Mark was able to calm me down and make me see it was a hoax. I remember he was very angry. My initial urge was to delete the letter, but I didn’t. I kept it as proof. The way I might hold on to an old lover’s shirt stained with another woman’s lipstick. Evidence that I couldn’t always trust my impulses.

Of course, I knew how the psychic was able to find me. India’s death from a rare neurodegenerative disease—so rare she’s the only recorded case—had made headlines in Canada and overseas. Then there was my blog. I understood by publicly sharing my story I’d opened myself up. I was like one of those frogs in my grade eleven biology class, pinned to the board, ready for anyone with scalpel to cut into. Not that this would stop me from telling my story.

The letter was an attempt to use my grief against me. It played on the fact that though my child is dead, my maternal instincts aren’t. The would-be psychic understood that part of me is always waiting for India, watching out for her as if she’s still a little girl and crossing a busy road.

It was naïve of me to imagine that my story might not be used against me. One only has to look back at history to see the evidence. In Britain after the Great War, a period where so many were traumatized it has become known as “shell shocked Britain,” spiritualism became a craze. While some these clairvoyants were believed to truly have sight, others were clearly charlatans. For my part, I’m certain those who are gifted are more circumspect with their talents. They don’t—as one massage therapist I visited did—proselytize to their clients while they are kneading the knots from their shoulders.

How peculiar it was there to lie on my stomach and listen as the massage therapist asked, “Do you know someone who smokes cigars?”

“Yes. No. Maybe.” Doesn’t everybody? I thought.

“Do you know that your daughter is always with you?”

“Yes.” This is obvious, isn’t it? I mean even for an agnostic, occasional believer of the spiritual, I know this to be true. After all we once inhabited the same body.

“Well,” he continued, “Next time you find a nickel it’s your daughter saying hello.”

I would’ve liked to have let myself be pulled under his spell. Believe he had a link to India. For a while I confess I even allowed myself to be comforted by him. I was early in my grief then, just driving to the appointment was a major achievement.

While India was in the hospice dying, I met with the hospital chaplain several times. She was a United Church minister but she had the air of an old fashioned Catholic priest. Sitting with her, I imagined myself in her rectory study, drinking Scotch, surrounded by bookcases crammed with leather-bound books. I liked her. She was straight talking. She didn’t speak in spiritual code. And not once, did she use the word journey. At our final meeting, she warned me to be careful of what she called psychic vampires.

“Psychic vampires?” I repeated.

“Some people thrive on tragedies. It’s makes them feel important. They will befriend you then dump you when something bad happens to someone else. I’ve seen it happen before.”

I never experienced this. Perhaps as I was fortunate enough to be guarded by strong women who watched over me like Templar knights surrounding the holy grail.

Still I have found myself in the thick of a story. How odd this is. To know the most devastating aspects of my family’s history is now dinner conversation. Don’t get me wrong, this doesn’t make me sad or angry, as a writer I take society’s need for stories for granted. I count on that need for my artistic existence. After all as any anthropologist knows storytelling is a basic need of all humans and common to all cultures. According to Wired magazine, “it involves a symbiotic exchange between teller and listener — an exchange we learn to negotiate in infancy.”

When I wrote short stories, I had distance, even when the story was based on memories. I could juggle the events, make characters crueller or braver than they were in real life. I could—though I seldom did—create happy endings.

I never wanted to write memoir. Essays and memoirs were the domain of intellectuals and those with extraordinary lives. My life was ordinary until India got sick.

Since I began writing my memoir, I’ve become immersed in the past. Sorting and sifting through the events, creating a structure out of chaos. Some may argue that by doing this I’m engaged in a kind of therapy—a theory that used to make me angry as it’s trivializing, and it ignores an integral part of my narrative: that I was a writer long before my daughter got sick. Story is my passion.

After a year of working on my book, I now know revisiting the past allows me a sense of greater control. Yes, I still have days when I can’t get out of bed. Days when I wish was dead. I haven’t been cured. Nor do I pretend to believe I ever will be.

In the early days after India’s death, I was desperate to survive. I tried to keep myself going by reminding myself that I’d been happy before India was born so I could be again. This approach failed. Once you’ve been a mother it’s impossible to reverse it’s affects. In fact, author Laura Glynn, a psychologist at Chapman University in California, states it’s “extremely likely that pregnancy permanently alters the human brain. The hormone flood that occurs during pregnancy dwarfs the hormonal changes that occur during other volatile times of life, such as adolescence.” Furthermore, “Just as teen hormones permanently alter brain structure and function, it’s likely pregnancy hormones do, too.” So it would seem my life’s narrative lies deep within my skull.

In August I travelled to Halifax and began my MFA in creative nonfiction at King’s College. When I applied for the program it didn’t occur to me that I might actually have to discuss my project. It was one thing to write about what had happened, another to talk about it. My first day at King’s I must have told about thirty people what my book was about. Some people already knew—they’d read the synopsis of my book in an email the program director had sent out. Each time I told my story I did my best to keep my voice steady. To try and distance myself and talk about my project like it was a short story. I’m certain I failed miserably.

The most challenging part of doing this is not saying the actual words. I live with the truth of what happened every day, it’s as much a part of me as the wrinkles around my eyes. But unlike when I write my blog, in the real world I can see people reactions. This is tough. Will they be kind? Or flippant? Will they start to distance themselves from me—both physically and socially? Or worst of all, will they take ownership of my story and attempt to end it as one acquaintance did recently when she said, “I know you must be very sad your daughter died, but really, that was her journey.” As if somehow deciding that India’s destiny was decreed long ago by Moirai, the Fates of Greek mythology and I was so unenlightened that I couldn’t accept it.

Thankfully my fellow students listened and reacted with kindness. Afterwards I found myself wondering what made this group so especially open. Was it that they’d read about my book before we met? To a degree, I’m sure this helped. Or was it that they were my tribe? People who understood the importance of story. Like me, many of them were writing about topics that made others uncomfortable. They knew only too well what it’s like to hear: why don’t you write about something happy or nobody wants to hear about that.

Recently I reread Jeanette Winterson’s memoir, Why Be Happy When You Could Be Normal. During this reading I was struck by how Winterson credits the redemptive role story has played in her own struggle to survive. She says it best like this: “A tough life needs a tough language—and that is what poetry is. That is what literature offers—a language powerful enough to say how it is.”

Currently India’s cells are alive at a research lab at the University of Ottawa where scientists are using them to learn about other neurodegenerative disorders. Already they’ve made important discoveries that might eventually impact many lives. Last week Mark viewed India’s cells. He said, “They’re like looking at a big city from space.” I could’ve gone too but I was afraid of breaking down. I’m scared of what I will see when I look through the microscope. Where my emotions will take me. Of course, this is temporary. Very soon I will be aching to hear the story India’s cells are keeping for me.

 

 

 

 

 

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