The Living End: A Memoir of Forgetting and Forgiving

In 2004, when my grandmother JoAnn was first diagnosed with Alzheimer’s, the news sent me into a tailspin of fear and sadness.

In my tumultuous Texas family, JoAnn had been more than my grandmother—the Auntie Mame of my Southern childhood, she was mascara-streaming-down-your-cheeks funny, a genius of the cocktail party who always seemed poised with some staggering, stiletto quip.

Without JoAnn’s outrageous example, I’m not sure I’d have had the courage to move to Manhattan at 18, to come out of the closet, or ironically, to accompany her through the final years of her life. Little did I know that, at the time of her diagnosis, my grandmother had only begun to educate me.

“The wonderful thing about Alzheimer’s,” JoAnn quipped during the early months of her illness, “is that you always live in the moment.” This was a zinger intended to conceal her frustration at having forgotten the punch line to one of her signature anecdotes. But it was, nevertheless, quite true.

Through the haze of our grief, my grandfather Alfred and I began noticing that, along with her memories, JoAnn’s grudges, hurt feelings, disappointments, and regrets were disappearing. In fact, within a year, she seemed more joyous than ever, more present and at peace.

Like King Lear, as JoAnn lost reason, she gained clarity. And as with Lear, her dementia provided her the chance to meet her estranged daughter, my mother, for the first time again. Their chronic conflict had been among my great sorrows; but suddenly, the past was, quite literally, forgotten.

One of the many things that this strange and heart-rending passage forced me to reconsider is the concept of “a blessing in disguise.” As a sentiment, I’m crazy about it, but as a phrase, it leaves something to be desired.

Personally, I don’t believe that suffering ever has a silver lining, nor do I believe that God sends us blessings cloaked in grief. I believe that suffering is suffering, and a blessing is a blessing, and nary the two shall meet. However, I also believe that, while stumbling through a genuinely horrible experience, you can sometimes be met on the road through hell by grace.

My grandmother’s Alzheimer’s was excruciating, and it was also, so strangely, accompanied by moments of confounding joy and beauty. I would never, ever have chosen it, and I wouldn’t trade anything for it. I don’t think there’s been a day that I haven’t missed the woman JoAnn was, but I also, in time, fell in love with the woman she became.

As I write in my memoir The Living End, this “new” JoAnn became the closest thing I’ll ever get to a guru, my life’s great teacher in all those precious little Zen lessons that I can’t seem to remember for more than five minutes, and can’t seem to discuss without lapsing into Beatles lyrics. Things like the importance of being present in your life, and that being too attached to your past can prevent you from having a future; that war is over if you want it, and love is all there is.

Just before the Christmas of 2007, as my family decorated the tree, I watched as JoAnn gazed with wonder into the sparkling white lights, the red and gold glass balls, the tinsel and ribbon and presents. She was, without question, the happiest person in the room. The rest of us were already sick to death of the holiday, and all the drudgery that goes along with it: the shopping, the schlepping.

But one by one, we stopped to watch my grandmother’s gorgeous smiling face, marveling at the angel staring down at her, and smelling the fresh, living scent of the fir tree. “Look at her,” I remember thinking. “She’s actually enjoying herself. She’s present to the once-in-a-lifetime-momentness of this in a way that no longer even occurs to me. In a way that I’ve forgotten. Which one of us,” I asked myself, “could be said to be suffering an infirmity?”

Alzheimer’s is often referred to as “a second childhood.” It’s a phrase that used to offend me, since it’s often delivered with disrespect. But from another perspective, it can be pretty profound.

When small children fall, they cry, and in five minutes, they’ve forgotten all about it. This sort of resilience seems so impossible in adulthood, but JoAnn taught me the value of forgetting.

Now, I certainly understand that my grandmother suffered a debilitating, in many ways tragic, disease that relentlessly stripped her of cognitive ability, while I enjoy the blessing of perfect health.

But I’m also very clear that throughout her Alzheimer’s—and in a way that never would have occurred to me during those dark days of 2004 when I first learned of her diagnosis—my grandmother never stopped teaching me through the example of her life.

More Posts from Architects of Change