The Long Goodbye

"Normal" vs. "Complicated" Grief
A study of bereavement.
March 5 2009 11:24 AM

The Long Goodbye

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Illustration by Deanna Staffo. Click image to expand.

A death from a long illness is very different from a sudden death. It gives you time to say goodbye and time to adjust to the idea that the beloved will not be with you anymore. Some researchers have found that it is "easier" to experience a death if you know for at least six months that your loved one is terminally ill. But this fact is like orders of infinity: there in theory, hard to detect in practice. On my birthday, a month after my mother passed away, a friend mused out loud that my mom's death was surely easier to bear because I knew it was coming. I almost bit her head off: Easier to bear compared to what—the time she died of a heart attack? Instead, I bit my tongue.

What studies actually say is that I'll begin to "accept" my mother's death more quickly than I would have in the case of a sudden loss—possibly because I experienced what researchers call "anticipatory grief" while she was still alive. In the meantime, it sucks as much as any other death. You still feel like you're pacing in the chilly dark outside a house with lit-up windows, wishing you could go inside. You feel clueless about the rules of shelter and solace in this new environment you've been exiled to.

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And that is why one afternoon, about three weeks after my mother died, I Googled "grief."

I was having a bad day. It was 2 p.m., and I was supposed to be doing something. Instead, I was sitting on my bed (which I had actually made, in compensation for everything else undone) wondering: Was it normal to feel everything was pointless? Would I always feel this way? I wanted to know more. I wanted to get a picture of this strange experience from the outside, instead of the melted inside. So I Googled—feeling a little like Lindsay in Freaks and Geeks, in the episode where she smokes a joint, gets way too high, and digs out an encyclopedia to learn more about "marijuana." Only information can prevent her from feeling that she's floating away.

The clinical literature on grief is extensive. Much of it reinforces what even the newish mourner has already begun to realize: Grief isn't rational; it isn't linear; it is experienced in waves. Joan Didion talks about this in The Year of Magical Thinking, her remarkable memoir about losing her husband while her daughter was ill: "[V]irtually everyone who has ever experienced grief mentions this phenomenon of waves," she writes. She quotes a 1944 description by Michael Lindemann, then chief of psychiatry at Massachusetts General Hospital. He defines grief as:

sensations of somatic distress occurring in waves lasting from twenty minutes to an hour at a time, a feeling of tightness in the throat, choking with shortness of breath, need for sighing, and an empty feeling in the abdomen, lack of muscular power, and an intensive subjective distress described as tension or mental pain.

Intensive subjective distress. Yes, exactly: That was the objective description I was looking for. The experience is, as Lindemann notes, brutally physiological: It literally takes your breath away. This is also what makes grief so hard to communicate to anyone who hasn't experienced it.

One thing I learned is that researchers believe there are two kinds of grief: "normal grief" and "complicated grief" (which is also called "prolonged grief"). Normal grief is a term for the feeling most bereaved people experience, which peaks within the first six months and then begins to dissipate. ("Complicated grief" does not—and evidence suggests that many parents who lose children are experiencing something more like complicated grief.) Calling grief "normal" makes it sound mundane, but, as one researcher underscored to me, its symptoms are extreme. They include insomnia or other sleep disorders, difficulty breathing, auditory or visual hallucinations, appetite problems, and dryness of mouth.

I have had all of these symptoms, including one (quite banal) hallucination at dinner with a friend. (I saw a waitress bring him ice cream. I could even see the flecks in the ice cream. Vanilla bean, I thought. But there was no ice cream.) In addition to these symptoms, I have one more: I can't spell. Like my mother before me, I have always been a good speller. Now I have to rely on dictionaries to ascertain whether tranquility has one L or two. My Googling helped explain this new trouble with orthography: Some studies have suggested that mourning takes a toll on cognitive function. And I am still in a stage of fairly profound grief. I can say this with confidence because I have affirmation from a tool called "The Texas Revised Inventory of Grief"—one of the tests psychiatrists use to measure psychological distress among the bereaved. Designed for use after time has gone by, this test suggested that, yes, I was very, very sad. (To its list of statements like "I still get upset when I think about the person who died," I answered, "Completely True"—the most extreme answer on a scale of one to five, with five being "Completely False.")

Mainly, I realized, I wanted to know if there was any empirical evidence supporting the infamous "five stages of grief."Mention that you had a death in the family, and a stranger will perk up his ears and start chattering about the five stages. But I was not feeling the stages. Not the way I was supposed to. The notion was popularized by Elisabeth Kübler-Ross in her famous 1969 study On Death and Dying. At the time, Kübler-Ross felt—accurately—that there was a problem with how the medical establishment dealt with death. During the 1960s, American doctors often concealed from patients the fact that they were terminally ill, and many died without knowing how sick they were. Kübler-Ross asked several theology students to help her interview patients in hospitals and then reported on what she discovered.

By writing openly about how the dying felt, Kübler-Ross helped demystify the experience of death and made the case that the dying deserved to know—in fact, often wanted to know—that they were terminal. She also exposed the anger and avoidance that patients, family members, and doctors often felt in the face of death. And she posited that, according to what she had seen, for both the dying and their families, grieving took the form of five emotional stages: denial, anger, bargaining, depression, and acceptance.

Of course, like so many other ideas popularized in the 1970s, the five stages turned out to be more complex than initially thought. There is little empirical evidence suggesting that we actually experience capital-letter Denial, Anger, Bargaining, Depression, and Acceptance in simple sequence. In On Grief and Grieving, published years later, Kübler-Rossinsists she never meant to suggest the stages were sequential. But if you read On Death and Dying—as I just did—you'll find that this is slightly disingenuous. In it, she does imply, for example, that anger must be experienced before bargaining. (I tried, then, to tackle On Grief and Grieving but threw it across the room in a fit of frustration at its feel-good emphasis on "healing.") Researchers at Yale recently conducted an extensive study of bereavement and found that Kübler-Ross' stages were more like states. While people did experience those emotions, the dominant feeling they experienced after a death was yearning or pining.

Yearning is definitely what I feel. I keep thinking of a night, 13 years ago, when I took a late flight to Dublin, where I was going to live for six months. This would be the longest time I had ever been away from home. I woke up disoriented in my seat at 1 a.m. to see a spectacular display of the aurora borealis. I had never seen anything like it. The twisting lights in the sky seemed to evoke a presence, a living force. I felt a sudden, acute desire to turn around and go back—not just to my worried parents back in Brooklyn, but deep into my childhood, into my mother's arms holding me on those late nights when we would drive home from dinner at a neighbor's house in Maine, and she would sing a lullaby and tell me to put my head on her soft, warm shoulder. And I would sleep.

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