My mom was a lovely women, but she had a terrible hangup about having her picture taken. You could trick her into busting out a smile for a camera, but only if you snuck up on her and gave her no chance to think about it. This was a person with roughly the spontaneity of a philodendron.

Yet in most photos of my mother, she’s cracking a funny face. This was rarely deliberate. Her discomfort with photographs stemmed from the fact that she was afflicted with a genetic disorder known as unphotogenecity. It’s a common affliction that causes otherwise perfectly attractive, even beautiful, people to take horrible, ghastly photographs. In picture after picture, my mother has got her eyes closed, or she’s peering off-camera with a confused look on her face, or she’s in the middle of blinking and chewing with her mouth open at the same time. In person, my mother turned heads at the supermarket or the nearby bar and boat landing that qualified as a yacht club on James Island until well into her fifties. But in photos, she often looks like a cast extra from an after-school special about mentally disabled kids – the one where you find out the kid’s mom is a few sandwiches shy of a picnic, too, but she’s still a good mom, goddammit.

I can personally attest to the fact that this disorder is an inherited one, as can, I suspect, my sisters. The only person in my family who ever managed to take a photo that was worth a damn is my father, who is, ironically, the one person among us who cares the least about his appearance. Isn’t that always the way? The greatest gifts are wasted on those to whom they mean the least.

My mother also had this infuriating habit of pretending not to know the answers to questions her children asked her, instead sending the querulous child – who meanwhile while was mentally punching him- or herself repeatedly in the face – to the bookshelves in the living room. There, we knew, with a certainty born of innumerable trips past, we could find all 27 volumes of the World Book Encyclopedia, bought from Time Life Books at a special discount rate through Reader’s Digest, a subscription my mother had picked up at a bargain-basement rate by mailing in the proof-of-purchase labels from 12 cases of Tab with a hand-written letter about how much weight she’d lost drinking a diet soda product that tastes like the carbonated tears of unhappy, chronically obese people.

To us kids, this always seemed like a cop out. It would be a simple enough question, often just an offhand musing-out-loud during family TV hour: How did Klinger manage to get all those snazzy dresses when the rest of the M*A*S*H unit couldn’t even get a regular supply of antibiotics and Hawkeye had to brew his own booze? Next thing you knew, the TV was turned off and the petitioner was being directed to the hated Encyclopedia, volume K-L, to enlighten the family with a 20-minute dissertation on the Korean War. It got to where my sisters and I were afraid to ask any kind of question at all. We didn’t really care whether John-Boy could have left Walton Mountain and become a WWII fighter pilot with prescription eyeglasses. But my mother could see the skepticism brimming beneath our adolescent eyes, and some unlucky sap would be sent to the WBE for a riveting discussion of Charlottesville, VA during the Great Depression.

My mother died eleven years ago today. My father was a huge influence on me, as fathers always will be. It’s him I have to thank for being such a sentimentalist, and also for being a writer who struggles daily with a weakness for rationality. But it was my mother who shaped my character – the singular lens through which I view the experience of life. I miss her as deeply as I would miss, if it were possible, myself. She breathed in life like oxygen, and sometimes she breathed too deeply. She allowed herself to be as battered by the world as she was by her own fears of it. Yet she was also a fearless student of experience. Her own mother died when she was 13 in a car accident, and she ran away from home four years later, rather than submit to a stepmother. She saw, and imagined, a side of the world that only the rarest, luckiest among us catch glimpses of, and she did her best to share that vision with her children. At my very best moments of observation, I have but a fraction of her gift for seeing the spark of truth in the artificial, the wonder of perfection in the mundane, and the majesty in the small, the unseen, and the overlooked.

The other day I ran across a short essay I wrote about my mother shortly after she died. It was never published, which was probably for the best. But this seemed like a good time to pull it out, dust it off, and lay it down on the table again for a look. She couldn’t take a picture if you gave her money. But pictures are for fools without memory or imagination.

I love you, mom.

I’ve been thinking recently about how the worst situations often have a weird tendency to bring about wonderful things.

This has been on my mind because it was four years ago this week that my mother died. It wasn’t a sudden death, which was both a blessing and a tragedy. It was one of those difficult, extended deaths that one hears about-worse than some, but also easier than many, I imagine. No matter how you look at it, though, it was the most difficult thing I or anyone in my immediate family had ever endured. To say nothing of her.

When she was first diagnosed with cancer in 1996, my mother, whose name was Carmen, was given only a few months to live. She’d been in Louisiana for several months caring for her own parents, who were both quite ill with heart disease, and she had ignored the signs that something was wrong with her own body until she found herself in the emergency room, panic-stricken, alone, her insides a wreck. When she arrived at the airport in Charleston a week later, my father, my two younger sisters, and I were waiting for her.

It was the first time for us together as a family for many months: not only had my mother been in Louisiana for almost a year, but she and my father had been estranged for several months prior to that. The reasons were many and complex, and we children were the least likely of anyone to be capable of understanding them. But it was every bit as real as her sickness, and we hated both the cancer and the division between my parents with the same bitter lack of comprehension.

She emerged from the gate red-eyed and weak, her abdomen distended with ascites as if she were eight months pregnant. She cried at seeing us, and we cried at seeing her cry and at the fear we all felt. We huddled together for a little while, a little ball of family, crying together, drawing strength from each other and trying to pass it on in equal measure. But the terror crept in among us, bubbling up in that group hug as if our closeness was all the permission it needed.

“I’m going to die,” she cried into my and my sisters ears necks. “I don’t want to die.”

“Don’t be silly, mom,” we cried back. “You’re not going to die. You’re just scared, and that’s okay.”

Yet inside, we all suspected she was right. The doctors in Louisiana had been clear: advanced ovarian cancer, not yet metastasized but almost certain to do so without extraordinary luck.

But what could we say?

Even after my mother was admitted to the hospital and her doctors told us the cancer was still treatable, she knew her chances were slim. But she grasped at that sliver of hope with the astonishing strength that only nearly hopeless people can muster. And she did it with such grace, such consummate eloquence. I lose my breath thinking what that must have cost her.

But my mother was a rock, unwavering in her conviction that she could beat the thing that was killing her if she wanted to badly enough, unwilling to give in to the numbing fear that would cause most ordinary people to withdraw into themselves like beaten animals, people who remain uncaring and unaware that the overwhelming beauty of the world and the people in it persists, even if they themselves do not. My mother poured her heart into her friends and children, and we spent as much time with her as we could, which was, for my part at least, hopelessly inadequate.

She was living in an apartment, which my sister shared with her many nights. Still, she kept my father at a distance. Sadness leaked out of her in silent waves when we spoke of him, but she was unrelenting.

The doctors finally gave up on the chemotherapy. It was doing her about as much good as a warm glass of gasoline each morning, noon and night, and it was a lot less pleasant. She didn’t despair but rather continued to hope that an alternative therapy might be found. My father spent the majority of his waking time calling physician friends, researching new or untried therapies on the internet, sorting through the thousands of snake oil peddlers and legitimate medical programs across the country, none of which would ultimately prove a salvation in any sense but in the hope that one might be. But we prayed, and my mother prayed, and my father prayed perhaps hardest of all.

In August 1997, my father announced that he and my mother were traveling to Houston to participate in an experimental procedure at a hospital there.

“It’s a little unconventional,” he told me, “but there’s a real chance it could do the trick.”

Somehow, I allowed myself to be persuaded that this was not a fantastic exaggeration. My sisters both knew the truth, of course: experimental procedures exist only for those who have exhausted every other possible medical recourse. They are the straws at which refugees of modern medical science clutch in their last, desperate hopes.

Yet I was too weak not to believe him. I knew I’d been neglecting my mother in recent months, unwilling to believe she could possibly die, afraid to confront the anger that festered in her toward my father, who, in her less lucid moments, she accused of causing the cancer. I had buried myself in work, pretending that I was too busy to make time for her,

About a week before she died, my mother was lying in bed, so weak she could hardly speak or even turn her head to look at us. Her eyes were sunken deep into her face like flickering bruises, her head hairless but for a few stray wisps, her skin colorless and wan. She wore a mask that fed her oxygen in a regular whish whish of air gurgling through humidifying water beside the bed.

It was an exceptionally good moment for her; she was sitting upright in the bed and smiling, looking around at us as if seeing us for the very first time, a surprised, slightly entranced smile playing across her face. She stared at my sisters and I with wide open eyes, soaking up the glory and the unspeakable magnificence of these things she had created, and she smiled with the happiness of all that. And we all felt it. I will never forget that look for the rest of my life. At that moment, she was the most beautiful woman I have ever seen.

My father was there with us, standing beside her, holding her hand tightly. As he had been for weeks. He suddenly leaned down, whispered something secret to her, and pulled the mask slightly aside so he could give her a quick, reassuring kiss. Somehow, my mother managed to raise her hand, tremulously, and place it on the back of his head, pulling his face down to hers, where she kissed him for what seemed like an eternity.

And it was.”