The Joy Thief
I am lying on the floor at the top of the stairs, hands on my chest, knees bent. The laundry basket stuffed with clothes sits by my side.
“Mom!” my daughter Claire calls up from below. “Do you know where my lacrosse jersey is? I need it for tomorrow!” She climbs the stairs, stops at the sight of me, and leans over, her soft, brown hair tickling my brow as she peers closer. For a split second, the hanging light behind her head makes the ends seem to sparkle. “You okay, Mom?”
“Fine, sweetheart,” I say. Some days getting up the steps turns my legs to taffy. Evenings are hardest. So I haul myself up by pulling along the banister, then lie down on the landing until my legs stop quivering.
“Okay, good,” Claire says, looking at me harder.
“Check your drawer?” I tap her gently on the nose; it’s a reflex I have whenever her face is close to mine.
Lying here for one minute more will give me the oomph to switch into manual override and keep on keeping on—critical during that witching hour when my son, daughter, husband, and I go from laughing ourselves silly at the dinner table to the homework-laundry-work-deadline-dinner-dishes frenzy. The more exhausted any one of us might be, the more likely one of us is to overreact to some small but seemingly big thing. One person’s momentary brain funk can precipitate a domino effect meltdown, changing the tenor of our house from silly good humor to cranky-central.
That means when someone says they can’t find their sweatshirt I hear myself groan, sigh, and say, “You’re kidding me, you didn’t leave it on the bus again, did you?” instead of, “Let’s go back to where you had it last. . . .” The more tired I am, the less likely I am to rise to the art of grace-under-parenting.
Claire unbends her lanky body and nods, half turning to check on me one more time as she heads down the hall.
She is the first to panic if she thinks I’m not okay. Recently, we were walking the dogs when I tripped over my own feet. Sometimes I have foot drop—the sole of my foot doesn’t lift up quite as far as it should and the slightest rise in the sidewalk can mean I find myself flat on my face. Because my blood doesn’t clot normally, an impressive amount of blood suddenly appeared across the knees of my white cargo shorts and across my palms. I reassured her that I could easily hobble the two blocks home, but she shrieked in a panicked voice most parents only hear their children unleash in the throes of a two a.m. nightmare, “Somebody help my mommy!!!” The lightning speed with which she hit her internal panic button—because of how often she’s seen me in a medical crisis—hurt worse than any sidewalk burns.
The good and the bad news is that after what she’s witnessed in eleven years as my daughter, lying at the top of the steps with my arms folded gently over my chest is nothing at all. So is falling facedown on the sidewalk, come to think of it.
I hear drawers open and close in quick succession. A second later, “Found it!”
“Donna? Have you seen my wallet?” My husband is calling up to me from the kitchen. “I know I left it right here on the counter, I’m sure I put it here!”
“Try the sofa?” I call. I dimly recall seeing it there next to his suit jacket, though I’m not sure if that was today or yesterday.
Footsteps. “Not there! You haven’t seen it?”
I sigh. The family joke is that I possess an internal “uterine tracking device”—my husband and son rely on it to help them find everything from the ketchup in the fridge to their cell phones to their flip-flops. All day long. I would normally start searching piles on his desk, ferret through his shorts in the laundry, and find it in five minutes tops. But I can’t bear the thought of getting down and up the steps again when my legs are only now starting to feel as if blood courses through their veins. Besides, I haven’t given up hope he’ll develop a prostate tracking device if I stop aiding and abetting. I hold out even greater hope for my son—I started his training at a much younger age.
I hear Zen still turning over stacks of papers, books. I try not to feel guilty lying here while everyone zips around the house trying to find what they’ve mislaid.
“Things have a way of turning up!” I say, calling down to my husband from between the banister’s railings.
I stare at the overflowing laundry basket, still waiting for me where I set it down. Keep on keeping on. Sometimes I resort to instructing myself, as if I were talking to a small child. You can do this. Really you can. The familiar inward-onward charge.
Suddenly I feel all my brain-body fatigue coiling up tight inside. If my life were an economics problem it would be easy to see, black and white, the figures right on paper: daily exertion + life demands > bodily stamina.
My son clambers up the stairs two at a time and steps over me, his French book under his arm. He sets it on the floor and offers me both of his hands to draw me to my feet, though he knows that in a minute or two I will get up on my own. He is smiling—glad, I think, to be bigger than me now, stronger than me, able-bodied enough to help me out. And late in the day, I have to admit, help is nice.
“Thanks, honey,” I say, as he pulls me to my feet—yanking a tad too hard. He doesn’t yet realize his own newfound adolescent strength—no matter how often we tell him that the force he packs when he wrestles with his dad or bear-hugs me is five times what it was six months ago. “Watch my back!” I sputter. He tries to compensate by resettling me against the wall.
Too much. For a second I stand against the wall, eyes squeezed shut, making sure neither of my slipped disks has slipped any further.
“Sorry!” he says. His face wells up. “Sorry, Mom!!”
I lose the growl. I smile at him. He is a lovely boy. Young man. I remember him at two, planting daffodil bulbs with me in the garden, his face welling up when a bumblebee he was watching with delight turned and stung him between his eyes. When life turns from grace to pain in a flash, he takes it hard. And I have given him, I think, too much experience with that.
“All good,” I say, opening my eyes.
“Can you go over my French vocab with me?” he asks.
I am glad to hear myself utter, “In ten minutes,” instead of, “God help me.” I head to the linen closet to stack the swim towels in a neat pile beside the bath towels.
In truth, God—or some great benevolent something—has helped me.
I know that I am a very lucky woman. I’ve been paralyzed twice and learned to walk again; my heart beats via a pacemaker; drugs make my thyroid work; physical therapy helps manage muscle and bladder spasms; and some of the best doctors in the world keep me going despite low blood cell counts and clotting factors and nerve damage and slipped disks and spells of recurrent fevers.
I’m still here. My children have seen it all; it’s our normal. Or sort of. They know the toll illness can take on a family that loves each other. But they don’t—or at least I hope they don’t—know how much illness steals from me every moment, every hour.
That illness is my joy thief.
* * *
I AM THINKING of one Monday afternoon, a month ago.
The kids, out of school for parent-teacher conferences, are at home while I race up to Baltimore, an hour north of where we live, for meetings with their teachers (fun, because it’s good news), then a meeting with my hematologist at Johns Hopkins (not all good news, so not so fun). By the time I get home I’ve been driving all day and fatigue reverberates through my cells. I am ready to shawl myself in my own small world. My fake-it face can’t be glued on any longer.
I come in from the garage to find my son, Christian, looking somber, unusually still, surveying me closely.
“Everything okay?” he asks. “You were gone a long time.”
It hits me, not for the first time, that I have spent a year of my children’s lives either in the hospital or in bed—twice bedroom bound as I struggled to learn to walk again—and that several times I have gone for a “checkup” only to be admitted in the hospital and not returned for weeks.
I smile to reassure him and cover up what kind of day it has been for me, my body, at the hematology clinic.
“You’re smiling—but your eyes aren’t,” he pushes on.
“Oh, Christian,” I say, brushing back the dark brown hair on his forehead. “Am I ruining your life by being sick all the time?”
He hugs me and begins to do a slow, awkward, fifteen-year-old-adolescent boy dance with me around the kitchen. “Mom,” he says, in a quiet voice, “you’re giving me the best childhood on the planet. You’re still here with me, aren’t you?”
“You’re still here with me, aren’t you?” Dear, sweet, beautiful son of mine. Neither of us speaks, our untimed steps gently hitting the wooden floor. We take a turn past the stove, the humming dishwasher, the sink. In this small moment, I am not ill; I have never been ill. I am just right here, with my son. I’m not ruminating about the daunting conversation I had with my hematologist an hour ago. I’m not worried about finding that last gasp of stamina to prepare dinner or get up the stairs to bed. Every cell in my body is dancing with that incredible lightness of being that rides in with joy.
I hear lacrosse gear clatter to the floor as my husband and daughter come in the front door. As they round the corner to the kitchen, I glance up and catch a flicker of worry in my husband’s expression. He’s wondering whether something is wrong—perhaps my son is catching me in a fall—then our eyes meet and I see his face shift into a smile.
* * *
THESE ARE THE moments when I realize, despite all, that wholeness is possible; that even in pain one can experience moments of beauty and well-being. But it takes unusual energy and willpower to rise above the physical reality I face.
It’s as if there are two different sound tracks blaring simultaneously in my mind.
The “Life Channel” and the “Pain Channel.” Shutting out the thoughts that I hear on the Pain Channel—the fears—is sheer work. It’s a powerful urge, to let the mind wander toward—and get stuck in—pain and worry over whether your symptoms are a little worse, even if you feel better when you don’t pay them any mind. In those moments I’m struck motionless. My own life feels like it’s happening at a remove—I have to work hard to reach out and grasp it.
As I am braiding Claire’s hair and kissing the top of her head, I have to struggle not to register the bleak messages the Pain Channel is trying to send: the overwhelming need to lie prone; the fear that my woozy body-rush means my fever of unknown origin is now edging over one hundred degrees. I sip ginger tea for nausea and try to ignore the fact that my legs feel as alive as driftwood. I discipline my mind to focus on this glorious, delicious girl: her lit face, her animated voice. Her excitement is my anchor, my high-speed connection to the Life Channel. If I can concentrate on the smell of her newly washed hair as I weave it between my fingers, I can keep down the sound level on the Pain Channel. But it’s always on, waiting for me to let down my guard.
One of my friends, a breast cancer survivor with two children close in ages to mine, says that living with the constant worry of what might happen next inside her body feels a lot like being stalked.
I get that.
I want to lose the stalker. Dial up the Life Channel 24/7. I want to walk into the kitchen and hug my son hello without his having to question every furrow of my brow, or monitor my pain. I don’t want to worry that my Pain Channel has become the sound track of my family’s life, too.
I want my children to grow up remembering me as the oh-how-I-adore-you mom who could. Not the mom who is always so tired, the mom who just couldn’t. The mom lying at the top of the stairs.
* * *
I FINISH PUTTING the laundry away and go down to the living room to show Zen that his wallet is right there where he left it by his suit on the couch—it was hidden under his coat sleeve.
“Wow!” he says, always grateful at my ability to make missing objects reappear. I brew ginger tea for my stomach, then make my way back upstairs—slowly. I lie down in bed listening to Christian review French adjectives, then half hug, half shoo the kids into bed, before tapping out a few last work e-mails to my editors and agent and clients from my laptop propped up on pillows before me.
I read a few dozen recent studies from my journalist listserv and put several into a new desktop file I’ve started to create called “The Science of Joy.”
These studies all emerge from a new field of research called psychoneuroimmunology, the study of how our thoughts, actions, and state of mind can trigger different immune responses. The more we experience well-being and contentment, the better our cells function. Specific approaches trigger that sensation of well-being—and better health. It’s fascinating to me. And it’s entirely new.
But I’ve hit the wall. I can feel my body and brain screaming, Stop asking me to do more! I shut down my computer.
Tomorrow will be another frenzied day—I meet my new internist at Hopkins because mine has recently left. I’m not looking forward to going over every nuance in my medical file. I work well with denial. Doctor appointments interfere with what I see as my primary and most successful coping strategy. Recently, I read a New York Times interview with the well-known doctor Julian Seifter, who suffers from diabetes and treats patients who are very ill with kidney disease: “Everyone needs the opportunity to forget their disease for a while and think of other things,” he says.
I couldn’t agree more. Earlier in the day I forced myself to make a list of all the diagnoses and symptoms I need to make sure my new doctor is aware of—but by the time I got to seventeen, I stopped. It was too depressing.
Light from the streetlamp outside our bedroom window is streaming in. As I draw the blinds and close the curtains before climbing into bed, I see Zen, setting the recycling out by the curb. He sees my movement in the window, and I wave down to him as he lifts his hand in his familiar gesture of half hello, half vertical I-salute-you, which always makes me laugh. He doesn’t think I smile nearly enough. He spends a lot of time trying to fix that.
I hear him back inside, turning off lights downstairs. I take a sip of my ginger tea, hoping to ease my stomach pain, and look out at the quiet trees. The late May breeze brings in the soft scent of trembling leaves and turned earth, as if the rain we’ve been expecting all evening has already arrived.
Not so long ago I couldn’t stand on my own two feet in front of this window; for months I could only see whatever slivers of life I managed to glimpse from my propped-up pillows in bed. I remember, one afternoon, after two or three months of not being able to get to the door of my room on my own, watching my neighbor’s mom outside with her two-year-old grandson. She and her husband were staying for the weekend, babysitting while our neighbors were away. Her grandson, who had only recently started talking, was racing from tree to tree saying, “What this?” pointing and asking for her to name, explain. It was a glorious spring day. He didn’t want to go inside. She—a young grandmother, very hip, working, on the go—was dressed for work, and she kept chasing after him in the grass in her high heels explaining, “That’s an oak tree. See the oak tree? Time to go inside, Justin!” Then he’d point and race to the next beautiful thing. She would try to race after him, high heels sinking into the grass, tell him what it was, then, “Let’s go inside, Justin!” This went on four or five more times before I watched her get her grandson in the door to her husband, wipe down her pumps with a paper towel, and jump in her car to race off to work.
All I could think was that I wanted that very thing back—real life. The real moment of wanting to teach a child about a tree or a bird and simultaneously feeling breathless and frustrated and rushed to get back to work, go conduct an interview, or deliver a lecture, while my heels got stuck and mucky in the damp, glossy earth. That lovely irreplaceable gorgeous mess of moment-to-moment real, ordinary life. I watched and I wept, because it was a thirst I could not quench: give me back my legs, my oh-so-ordinary life.
I thought that if I could walk on that grass again, it would be enough of a miracle.
But now I want more. I want to enjoy being right here, right now.
I know how lucky I am every time I cross the lawn, even if I’ll never wear high heels again. Or each time I get up the stairs—even if I have to haul myself up by death-gripping the rail. It beats being carried up the steps in a harness slung over the back of a six-foot-three physical therapist.
I know that.
But what I’ve been left with is not a whole life.
That loss, day after day, isn’t something I can put on a list of symptoms to discuss with any MD.