“Are you still married?” The customer asks.
I look up from her bill and glance towards my section on the patio, hoping to find an excuse to leave. Nobody needs me. I’m stuck.
This customer and I share an unwanted and one-sided intimacy. For the last months of my sixteen-year-old daughter India’s life, this customer was our social worker. Her job was to navigate us through the medical system. She was neither exceptionally good at her job nor bad. This is the first time I’ve seen her since my daughter died ten months ago and I can’t remember her name.
Finally I say, “Yes, we’re very nice to each other.”
“That’s good. Most couples blame each other.”
“But it’s not his fault. Why would I blame him?”
“They just do,” she says.
And with that’s she gone, unaware of how her question will follow me, all night long, as I refill water jugs, scrape plates and polish silverware. Later it will strike me as ironic that even this woman, who makes her living as a voice for the vulnerable, has no idea how to treat me.
This is not the only time I’ll be asked this. In the months that follow I will grow to resent this question, even when it comes from a close friend. Often, I will have an urge to ask the question back as a kind of admonishment. Or, perhaps, if I’m honest, out of spite.
I never do. Partly as I don’t have the energy, and partly as I understand that this question is simply a fumbling attempt at connection. A well meaning, but not necessarily thought out, effort to be empathetic. Even so, I find myself speculating about why people feel they can be so presumptuous. If I’d lost a leg, would people ask me if I expected to lose the other?
When I say that my husband, Mark, and I are fine, the response is invariably the same: Oh, you’re so lucky to have each other. At this point, I sometimes have to stifle a laugh. Usually I take a deep breath and clamp my mouth shut. Yeah, we’re really lucky, I think, so bloody lucky. Clearly they aren’t thinking about the fact our only child died of a neurodegenerative disease so rare that at present she’s it’s only casualty.
I’m afraid eventually I won’t be able to contain myself. I’ll be transformed like the bitter sister in the fairytale Diamonds and Toads, and all these pent up thoughts will drop from my mouth in the shape of snakes. I don’t want this to happen. I’ve seen enough of life’s cruelties to know I don’t want to perpetuate them.
Nobody ever asked if we were still married when Mark and I were caring fulltime for a dying teenager—a time when we were sleep-deprived, financially strapped and terrified. During these months, the days were filled with appointments with a small army of medical professionals from the local provincial health organization, the CLSC, most of whom treated India as her illness rather than a teenage girl. The only exception was the massage therapist, whose arrival was always followed by laughter. In addition, India had two caregivers: one, we considered family and trusted implicitly; the other always made sure to feed us.
At night, alone, we lived under siege, taking turns sleeping in India’s room, attempting to reassure her when the hallucinations took hold. When she’d wake up screaming, petrified of the giant cockroaches she believed were going to kill her.
As we adapted to the new realities of our lives, we developed an in-the-trenches kind of attitude. As the writer and Vietnam veteran Tim O'Brien wrote in The Things They Carried, “War is hell, but that's not the half of it, because war is also mystery and terror and adventure and courage and discovery and holiness and pity and despair and longing and love.”
There were times I hated Mark. Nights, mostly, when it was my turn to stay with India, and I was so tired and anxious, I thought I’d vomit. When all I wanted was for him to rescue me. Rationally, I understood he couldn’t. He was just as besieged. How could he not be? Watching our daughter suffer night after night was like watching her being raped repeatedly.
Our relationship changed; we became war comrades. In our moments alone, we shared cigarettes, glasses of scotch, and even laughter. But our jokes were different now. Cynical and dark, evidence of what we’d lost. I never blamed Mark for what was happening. We shared an intrinsic, silent agreement that if either of us could take India’s place, we would.
As a bereaved mother—particularly in a case like mine, where the facts were all over the local and national media—you become public property. A story. “Will they or won’t they survive?,” I imagine acquaintances asking each other over cups of coffee. As if suddenly my marital status has taken on the importance of the latest Hollywood break-up. Mostly this doesn’t bother me. Grief has shifted my priorities. But it’s odd to think the same people who wince when I say my daughter’s name are comfortable asking about my marriage.
I suspect the interest in my love life stems from the common misconception that the death of a child frequently signals the death of a marriage, a notion that many a made-for-TV movie has nurtured. A 2006 survey conducted for The Compassionate Friends, a society devoted to the support of bereaved parents, “showed a divorce rate among bereaved parents of only 12 percent … [and] suggests that the 70 percent, 80 percent, and 90 percent divorce rates often quoted as fact by professionals and in the media are completely inaccurate. The figures indicate that the death of a child actually appears to draw bereaved parents together as they travel life’s grief journey.”
Though I hate the term grief journey, and the image it provokes, I admit Mark and I are so in sync in our grief that my bad days frequently shadow his. Still, I find statements like “you must be a comfort to each other” naïve, merely proof of how misinformed our society is. It’s beyond our capabilities to comfort each other. There’s nothing I can say that will make it better and he knows it. Our emotions are exhausted. In order to survive we must portion out what remains frugally.
In the early months of grief, I would lie in bed next to Mark contemplating suicide, knowing he was doing the same. Sometimes I would sob and he would hold me. Sometimes it was the other way around.
During this period, I used to wish Mark had a lover. When I pictured her, she was a compilation of a Dutch nurse I’d known at summer camp and Uschi Digard, the Swedish star of Russ Meyer’s soft porn films. An earth Goddess, with boundless empathy, a strong embrace and a raw sensuality. I didn’t go so far as to envision them having sex. Though the idea of that wouldn’t have bothered me. At fifty, I appreciate that people have sex for many different reasons, grief being one of them.
This surrogate lover would provide Mark with what I couldn’t. Endless nurturing and energy. A warm place for him to lay his head. I’d never been good at those things to begin with, but now, it was worse. I felt as if my heart had shrunk. It was like an old cashmere sweater accidentally thrown in the dryer, battered and small. And no amount of pulling would change that.
Recently I told Mark about this.
“I never wished you had a boyfriend,” he said.
“I didn’t think so,” I said with a smile.
“But that’s what I would have wanted then. Just to lie in bed and be held.”
For a while I felt guilty about these thoughts. In retrospect I no longer do. I’ve learned enough about the character of grief to know it can’t be trusted. It’s as unpredictable as a teenage girl. One moment I can’t figure out how I will survive the day without India, the next I’m daydreaming that I’m living in Mexico. Loss has trained me to look at people’s intentions. When I imagined the surrogate lover I wasn’t being cruel. I simply wanted Mark to have what he needed.
I love Mark, but there are days I’d like to run away. Watching him grieve hurts. It’s like when India was learning to walk and she’d stumble and injure herself. As much as I wanted to protect her, I couldn’t stop her from falling.
When I told my grief counsellor I wanted to run away, she said the feeling was probably linked to how I dealt with past traumas. Later she told me she imagined if I was alone, I might travel to the east, volunteer at an orphanage or school. She could see me mothering the children. She said she knew I’d been a good mother and that I still had a lot of love to give.
When she said this I believed her. In mothering my child I’d discovered the best of myself. I loved India in a way I’d never loved anyone else, fearlessly and without reservation. With her death, I’d lost the person I’d become because of her. I wondered if the urge to run was instinctual, an attempt at preserving that fraction of myself that remained.
Sometimes I allow myself to think what it would’ve been like if Mark or I had died instead. I’ve never wished it had been him over her. But if I did, I don’t believe he would blame me. It would’ve been easier if it were one of us. We’ve lived big lives: travelled, made art, loved and lost.
Now and then when I imagine Mark and India living without me, I see them driving on a long curving piece of highway. The windows are open and the music is blaring. India is singing or laughing, maybe at something I once said. In this scenario, they are moving forward. They are sad but intact.
There’s a saying I keep coming across on the Internet grief sites, and it’s one of the few I believe: “When a parent dies, you lose your past; but when a child dies; you lose your future.” I’m not sure of its origins. But I’m certain it’s by a bereaved parent.
What that saying fails to mention, though, is that bereaved parents lose both the past and the future. Every good memory is enveloped in pain. I can’t think about the day India was born without remembering the day she died. Even my wedding is shrouded. I was five months pregnant when we got married.
I no longer worry about the future. Like a reformed alcoholic craving a drink, I survive by breaking the hours into minutes and distracting myself with plans. A road trip with Mark, house-hunting, a good movie.
While I was writing this, I got worried that some of what I wrote about might hurt Mark’s feeling. “Write it all down—everything,” he said. “People need to know.”
India looked like Mark. She had his dimples, green eyes and wide smile. Occasionally I find myself studying him in order to catch a glimpse of her. This is not comforting. It’s more a reminder of what was. One of the cruelties of my situation is that I still look for proof that it really happened. That I really did have a daughter who died. Mark is evidence of that chapter of my life. This links us. It’s what stops me from running when it gets too hard. Like all lovers, I’d like to believe Mark and I will be together forever. But my personal history has demonstrated life is anything but predictable. Still, no matter what, I believe we are united in our burden. This story of grief we share.