Robert Leleux talks about miracles, aging, Alzheimer's and The Living End

I recently met Robert Leleux at Kathy L. Patrick's phenomenal Pulpwood Queens Girlfriend Weekend book extravaganza. He pops with personality, he's warm, funny, and when he read from The Living End, I was struck by the infinite grace (and hilarious wit) of his writing. I couldn't wait to get him on here and I tracked him down through Kathy (thank you, Kathy), and thank you Robert. I'm truly honored.

You write: tiny, workaday actions can add up to miracles. Indeed, in this extraordinary book, they do. Can you please talk about that?

I can be as cynical as anybody; there’s a part of me that goes through life believing that real change is impossible.  But I can now say that my experience, and the experience of my family, directly contradicts such cynicism.  My mother and my grandmother had always hated each other.  I mean, from the womb.  And then, during the final years of my grandmother’s life, their relationship was entirely healed.  And one of the critical ways that healing occurred was through these teeny, tiny little acts of intimacy that my mother was heroic enough to undertake while caring for my grandmother.  Brushing her hair, polishing her nails, choosing the perfect brooch for her blazer.  Whatever.  And all those little, do-it-without-thinking things that we so often find ourselves doing for the people we love—changing a surgical dressing, changing a diaper, packing a lunch—they became these little stitches of affection that ultimately provided this spectacular healing.  I’m sure all mothers already know this from experience; and I’m sure, on some level, I already knew this, too, from having been a much loved child.  But it was nevertheless quite remarkable to witness the process by which someone comes to feel loved.  The process by which a loving family is formed.  And it was phenomenally un-operatic, you know?  It was a great love story told one Depends diaper at a time.  And it was, maybe, the most beautiful thing I’ve ever seen.

 OK, I have to ask: Part of the unexpected delight of this book is the way you make Alzheimer's hilariously funny (without, of course, making fun of it.) The humor takes away a lot of the fear people have about this disease. What else do you hope to challenge about peoples' perceptions about aging and disease?

Well, first of all, my grandmother JoAnn was THE funniest person I’ve ever known.  In the words of my godmother, she was “mascara-streaming-down-your-cheeks funny.”  So, it was extremely important to me that when I wrote about her life, it wasn’t gloomy.  You know, just because my grandmother had Alzheimer’s doesn’t mean that Alzheimer’s was the story of her life.  Wit, humor, and style, those were her defining characteristics.  She used those qualities to get through all the lousy stuff life threw her way—depression, The Depression, World War II, male chauvinism.  And to have told her story, even the saddest parts of it, without employing the same strategies would have felt, in some sense, like a violation.  Just as it would have felt like a violation if I’d, in some manner, compromised her dignity by making light of her situation.  But the insight writing this book gave me was that any person’s story is much more than the sum of their experiences.  That the lion’s share of a person’s humanity can’t be conveyed in a biographical sketch.  We’re always so much more than what happens to us.  And I think, in particular, when we’re talking about people who are ill, it’s very easy to forget that illness, any illness, is just this biological phenomenon, just the interaction of cells and germs, but that human beings are this spectacular, mystical, unquantifiable collision of dust and divinity.  So, we can never, never be defined merely by what’s occurring in our bodies.           

What I so loved about your book was the way you looked at and interacted with your grandmother--the family bonds even in the face of Alzheimer’s--a disease which transformed your grandmother JoAnn into a loving person who forgot past hurts. And even with Alzheimer's you were able to learn from her. Can you tell us what you learned and how it changed you?

The most devastating (and probably, the most selfish) thought I had after my grandmother’s Alzheimer’s diagnosis was, “I don’t know what I’m supposed to do without you.  This isn’t fair.  You haven’t finished teaching me yet.”  Because, my grandmother was THE person I called when I needed advice, or had to talk through something.  But what I very, very slowly realized—and we’re talking, over the course of several years here—was that she never stopped educating me, even in the midst of a severe illness.  So many of the BIG lessons—about being present, and not allowing yourself to be limited and hamstrung by the past, and about it never being too late to be surrounded by love—I learned from my grandmother in the final years of her life.  I remember very clearly, there was this moment when I was worrying about some big, awful decision I had to make, and I looked over and saw my grandmother sitting there smiling, and I thought, “Oh, that’s right.  I forgot.  My job, as a human, is to Be Here Now.”  Which is that great Zen lesson I forget about a million times a day.  And then I thought, “She’s entirely present, and quite happy.  Between the two of us, which one of us could be said to be suffering an impairment?”  So, you seen, JoAnn never stopped setting an example for me.

Being a caregiver, the way your mother was to your grandmother JoAnn can be exhausting. What did you learn from watching your mother and how did it impact your life?

There is no more challenging work in the world than that kind of caretaking.  The difficulty of that experience is so all encompassing.  It’s emotional, it’s spiritual, physical.  You just have to experience it to have any kind of understanding of the kind of exhaustion it creates.  It made me realize that not only do people experiencing illness need caretakers, but caretakers need caretakers, too.  You have to check in with these people, and really insist that they care for themselves.  Take them to the movies; insist they take a nap; treat them to a mani-pedi, whatever.  AND it also taught me that there’s no holier work than caring for a loved one.  That the horror and difficulty of it is in direct proportion to the holiness and worthiness of it.  ALSO, I just want to point out that this kind of work is largely unpaid, or at least extremely underpaid, and it’s also almost entirely done by women.  And that’s not a coincidence.  We have, yet again, another scenario where women are expected to do something incredibly difficult for no pay, and really, not much acknowledgement.  I think that, in addition to giving out Purple Hearts and Medals of Freedom to people who’ve been in combat, we need to give them to people who’re undertaking the work of caretaking and healing.  Because what these women are doing is a contribution to the nation as profound and scary and challenging and heroic as any human endeavor.

I love that you wrote, "we are largely whom we pretend to be," which sounds like wonderful advice on how to live your life when you don't feel worthy or loved or any number of things. Care to comment?

Oh, well, my grandmother was this fabulous, over the top Southern lady who lived her life at a sort of non-stop Tennessee Williams pitch.  Reality was never entirely sufficient for her.  So, she always existed on two distinct planes—what was actually happening, and the way she interpreted what was happening.  And that was such a powerful lesson to me—as a person, and as an artist. That we really do have the power to make chicken shit into chicken salad.  She taught me that you can kind of stake a claim for yourself in faith and belief, and that reality, very often, will reconcile itself to your point of view.  So, for instance, if you have crazy self-confidence, very often the world will begin to treat you with the respect you’ve always demanded.  Or, if you believe yourself to be worthy of love, love will quite often come your way.  So, I guess it’s a very powerful argument in favor of being completely delusional.

What's obsessing you now?

Over the past generation, our culture has undergone this compassionate revolution in relating to children with developmental issues.  I remember so clearly how terribly children with autism, for instance, used to be treated.  They were a segregated population, treated as though they were malformed, or mistaken.  And now, thank God, we know that there’s nothing “wrong” with those beautiful kids.  They’re exactly who they are, and where they’re supposed to be, and they have so much to contribute.  And I think we so desperately need to have a similar revolution in our thinking about people going through Alzheimer’s and old-age dementia. What they’re experiencing is completely natural, and we really need to flex our compassion in relating to them.  I mean, their lives aren’t over.  They’re still present and aware and alive.  And we need to work to make their lives as stimulating and affirming, as filled with humanity as possible.  One of the huge light-bulb moments of my life was when I realized that there’s a fundamental difference between “gone” and “missing.”  My grandmother’s Alzheimer’s broke my heart.  I desperately missed the woman she’d been.  But though many parts of her seemed to have disappeared, they weren’t missing.  She was whole and complete, just as she was.  She was fully experiencing a natural passage of life.  And the more fully I absorbed that lesson, the more fully I was able to savor her company, and enjoy the time I had left with her.