one-arm dance

The most fun I ever had during my few years at Fresh Air took place in the control room. It was the very beginning of the 21st century. My dear friend Ann Marie sat at the computer just in front of me. We had been assigned to work on Terry Gross's interview with David Rakoff, who had recently published a book. I'd long been a fan of his personal essays.

Before long, we were laughing so hard we were crying. I remember typing away, looking at the computer screen blurred by tears. He was funny, biting, vulnerable. David Rakoff was verbal in a way that can't be adequately described by the word verbal. His mind whirred away, and thoughts flowed out in elegant descriptive sentences delivered at a faster-than-average clip. He spoke the way he wrote. And he wrote in a way that was so personal and funny that the reader - at least this reader - felt a kind of intimate fondness for him usually reserved for close friends.

After that, even though he didn't know it, I sort of considered David Rakoff to be a friend. Maybe that's weird. But I truly cared about him. He gave me the gift of that hilarious hour spent with a friend (who actually knows that she's my friend) and with Terry, not to mention hours of delight while we edited the interview. We still quote it. The experience somehow cemented my bond to the show; all these years later I still feel connected to my colleagues from that time.

Yesterday I went on a short run and listened to a recent This American Life podcast in which they reran a tribute to David Rakoff. He died of cancer five years ago. I remember the grief I felt when I heard the news, and how soon after I sat alone on the bed in my purple bedroom in Annapolis after the children were asleep and watched a video of him reading at a live TAL show near the end of his life. In the course of his treatment his arm had been amputated, or maybe he had just lost the use of it. He talked about how he'd learned to do things like cook a pot of pasta with one arm.

Then he shared that he had, in abler times, taken dance classes. That he loved dance. And then suddenly, unexpectedly, the stream of words quieted. He walked to the other side of the stage, and with one t-shirt sleeve shoved inside his pants pocket and his pale head shorn of all hair, he danced. 

David Rakoff moved with exquisite grace. His body said much more than his words. He was dancer! I hadn't known. He was a dancer, and in his brokenness, he shared a dance.

This morning at church, our assistant priest opened the communion portion of the liturgy by saying something to the effect of: do good, and share all that you have, for such sacrifices are pleasing to God.

Words like these normally to me sound like: be kind, be generous, give to the poor, visit the sick, give of your great reserves to those who have less. Be charitable. Time and talent! Give. It's not the only place we hear such messages. We're supposed to help the needy. 

But what if you are the needy? When we are urged to be more charitable, a position of power is assumed. Other people have less power, and it is our duty to descend from our perch and give them a hand. Giving is a comfortably good thing to do. Give a meal, give money, give time to a charitable organization. I feel awful many times a week when I am reminded that I don't have the ability to give in the way I once did.

We are rarely encouraged to receive charity. We are rarely urged to accept welcome with grace. But the truth I have discovered is that accepting generosity is just as hard, if not harder, than being generous. We don't value weakness, poverty, illness, dependency. We don't want to be defined by these things and when someone goes out of their way to help you, you are recognized in your vulnerability. Exposed, revealed, raw.

It's been a grueling few weeks for Mike medically, and thus for our family generally. At this point in my career as caregiver/advocate the way that I know I'm really struggling - like, alarm bells are going off all over the place - is that I start to not want to ask for and receive help. I notice myself hiding away, taking on everything as stealthily as I can, crying alone, because I can't bear to reach out for the support I need. Basically, when I am that depleted and worried and emotionally stretched, being exposed in all my raw vulnerability is too damn painful.

It's hard to ask for help. It's hard to admit you need help! So when I feel bad, I'd rather not.

It's one of those unfortunate human paradoxes, I guess. When I am most in need of help, I am most disinclined to ask for it.

As you might have guessed, I'm emerging on the other side of one of those hard times. Mike has been home from the hospital for two days, dear Heather drove all the way here to help with the kids and the house so I could work on putting things back together again after a tough week. I've had the chance to exercise again. And listen to a podcast. And cook a meal.

Normal people stuff. Normal people who can give to the needy type stuff. Not crying-on-the-floor-of-CVS, wrecked and raw, freaking people out with public tears, really really broken kind of stuff. Nah, that was Friday. Now it's Sunday night, and I'm stable, I'm good. I'm so good I can get back to asking for help.

Help, help, help!

See, it's fine.

Remember how our priest invited us to communion by saying do good, share all that you have, for such sacrifices are pleasing to God? When I heard her today, I thought of David Rakoff's dance. Share all that you have. Don't not share your dance because you only have one arm. Share your lack, share your incomplete body, give it all away. It will be breathtaking.

Maybe both the pain of receiving and the effort of giving are forms of doing good. Giving and receiving charity; seeing and being seen. Maybe we are called to inhabit both sides of acts of love.

I don't know why telling you how hard this feels, how tired I am, how I worry my kids are angry at me, how I cry a lot, how I obsess over my own minor health problems, how I am late to everything, how I worry I am letting Mike down, how my heart breaks many times a day, how I laugh too loud, how I hug everyone tight including some who might not actually want me to hug them, how I embarrass my children, how I ate a big dish of ice cream last night only two weeks into my six week dairy-free experiment (to see if it will help one of my aforementioned minor health problems) seems akin to a one-arm dance. But it does.

I am sharing all that I have, incomplete and exposed and beautiful in its own way. It takes a certain modicum of strength to share my weakness that I might not always have. But with your help, and with God's help, I'll keep trying.

gypsy mama

the Gypsy Mama sobbed her grief

into her only handkerchief

Perhaps you too have read Madeline and the Gypsies aloud dozens of times. That couplet always grabs me as I glide through the concluding lines of the story. I pick up the pace because I know Beatrice will insist on lingering over the picture of all the girls doing outrageous circus-inspired gymnastics on their little iron bedsteads when Miss Clavel comes in to say goodnight, and it's past time (it's always past time) for me to say goodnight to Beatrice already.

Squat, neckless Gypsy Mama is clad in her voluminous black shawl, her fat fingers covered with garish jewels, sitting hunched and alone on the side of the circus ring crying, while nearby Miss Clavel is joyfully reunited with Madeline and Pepito. The galloping rhythm of those rhymes plunges us towards resolution, when everything will turn out right. It really does encourage us to slide over her grief. It's barely a hiccup on the way to restored order.

But how I identify with the bereft Gypsy Mama! She's the anti-Miss Clavel, her physical opposite as well as her opposite in child-rearing philosophy. Teeth brushing? Never heard of it.

Well, unlike her, I do in fact support things like bedtime and school attendance. What I connect with is her vulnerability and her pleasure in everyday life (they go hand-in-hand I think). Despite existing within the confines of rhyming couplets and heavy-handed stereotypes (of course she kidnaps the children) she so clearly enjoys those kids. She makes them harlequin costumes, stays up late with them singing around the campfire, teaches them circus tricks. Teaching my kids how to do anything - bike-riding, swimming, loading the dishwasher - is an emotional trial usually taking me months to complete. I know that teaching Madeline and Pepito how to ride the circus steed was no small feat. They probably whined and cried a lot. She stuck with it anyway. That's commitment. That's love.

And then she lost them. Part of her had to know that was a possible outcome, seeing as how she kidnapped them, but she loved them anyway.

Throughout the past two years, whenever anyone hears about our ongoing battle with Mike's cancer, there's usually a moment when the fact that we have three kids sinks in. How young Mike is, how young our kids are, how much they still need from us, how hard it must all be at this particular developmental moment for our family. Caring for those kids in the midst of facing this relentless disease! As if our burdens were not heavy enough.

But like the Gypsy Mama, whose life is so tough that she owns but a single tattered damp handkerchief, lately I've come to realize that traveling a damn treacherous road with my kids is the opposite of a burden. They're my protection, my stability. If I had to I'd kidnap them off a ferris wheel to keep them around, I would. Loving them anchors me to the green muddy earth.

When things are hard and scary with Mike's health, as they are right now, my mind wants to fly off into a thousand nightmares, images of widowhood from the mundane to the sweeping - everything from the mild worry of how will I do the taxes all by myself? to the grief-soaked panic of how will I bear anything all by myself? - and it's hard to let those thoughts come and go without grasping at them, shaking them by the shoulders, being mad at them, feeling frightened by them.

I think about the past too, the opportunities I missed. I wallow in my own helplessness. I worry about my gray hair and my flaccid triceps. I worry the children eat too much ice cream.

I worry that I'm not strong enough to meet this moment as I should.

Maybe we all know that terrible doubt. My children save me from being dragged under by it, because they require and invite my presence in this moment. They look me in the eye and ask for help untangling a Slinky, or to listen while they tell a story about camp today, or ask if I'll play Frisbee, or if I'll read Madeline and the Gypsies again. Or ask if they can walk to Splits and Giggles to get ice cream. Again.

A summer's day with them can feel like a slew of requests, which sometimes makes me crazy (especially when the requests come in simultaneously) but I think the requests themselves are secondary. The particular glass of milk isn't the point. Asking me for stuff is a form of relating that facilitates connection and presence. It also makes us all feel like things are gonna be okay. Cancer be damned: they're still my beloved, mildly overindulged kids, and I'm still their responsive, capable, harried mom. I simply can't absent my body, worrying about insurance, when I'm handing out ice cream cones and urging Beatrice to lick the back of hers before it drips all over her thigh.

Without the kids I'd be a wreck. There'd be little to stop me from living inside my phone, drinking like a fish, holing up in a cave. Without the kids I'd never have the courage to ask for and to receive help, and I'd have a lot less motivation to take care of myself. With the kids, I can't flee this terror. I have to live it.

And with the kids, I can be goofy, expressive, playful, angry, sad, worried. Exhausting as parenting is, it's also restorative for that reason. I can sing in the car, jump off a swing, dance in the kitchen, quote George and Martha, stretch my legs out all over them on the couch, make up silly rhymes and songs, all without a hint of self-consciousness. That's what family (and others whom we unconditionally love, our friend family) is so good for. Being yourself; being at home. My big kids are old enough to find all this embarrassing, and they adore teasing me about being insufferably cheesy, but that's fine. I know they like me to be who I am. And they know I like them to be who they are. Who they are becoming.

Yesterday, Beatrice was upset with me because I said no to something - I can't even remember what now - and she was following me around, whining about it. We were waiting for one of the older kids to come down to go somewhere. I was finding Beatrice very, very irritating. I suddenly flopped down on the yellow chair and pulled my phone out of my pocket. I began scrolling through my Facebook wall, ignoring her.

Mama! Why are you looking at your phone? I'm trying to talk to you!

....well, Beatrice (eyes still glued to screen) ... I think your whining was driving me so crazy, I just wanted some distraction from it. I couldn't stand listening to you complaining like that anymore so I took out my phone.

But Mama, she said, tears audibly rising up in her throat. Mama.

I looked up and saw her blue eyes, framed in dark lashes, looking at me so intently.

Mama, that makes me feel sad when you say that. I feel so sad right now!

Oh. Oh oh oh. There's nothing like an I statement coming from an earnest four year old to melt this mama's heart. I put away the phone and hoisted her into my lap and felt her warm heavy limbs sink into me. I stroked her tangly hair. We didn't speak until Gabriel came down a few minutes later.

It was, hands down, a much preferable coping strategy to wearing out my thumb scrolling through my healthy friends' vacation photos. Thanks, kiddo.

imaginary escapes

1.

I roll towards Mike, who is sound asleep. It is still very dark and quiet outside; no early rising birds are awake yet. I know it's now or never, so I grab his shoulder and give him a decisive shake. He opens his eyes wide and looks at me, expectant. He throws off the covers and without a word we run:  fleeter and faster than seems possible, silently across the hall and down the stairs. We noiselessly unlock the front door, shut it behind us, and sail into the predawn street. We are barefoot, we are in our rumpled old T shirts that we sleep in, we don't have our glasses and can't see well. We run down empty city blocks, past houses with darkened windows behind which all kinds of people are obliviously dreaming. We run so fast that our chests hurt and our breath heaves; our feet barely touch the concrete. We skirt broken glass and leap over knobby roots.
We don't look at each other, and we don't slow down. Not until we reach the cemetery after the big hill of South Duke Street, just as the city begins to loosen its grip, the density of shabby buildings making more and more room for green. Then we instinctively know it is safe to slow down and jog, our limbs suddenly heavy, now slick with sweat. The sun has only just begun to illuminate the landscape. In the hazy light, flanked by corn fields, in the middle of a curving road with nary a car in sight, we finally look at each other and smile, gasping, and allow ourselves to slow to a stop.
Back on Elm Street, in a nest of still-warm, rumpled sheets where Mike's body so recently rested, is a steaming, seething lump of yellowish cancer, looking around, bewildered and a bit panicked, wondering where its host has gone, and how it can possibly survive all by itself like this. A few miles away, we are smiling. We are laughing out loud, because we know it can't. We've outrun it.


2.

I am thinking about Mike's cancer refusing to go away and all the things it wants to take away from me. I am washing dishes, my hunched back to the kitchen and everyone in it. It's a quiet morning, and I am filled to the brim with dread, with hurt, with terror, with anger, with rebellion. The blackness inside simmers a little faster and tiny bubbles of resistance burst in my brain as I scrub the stubborn remnants of scrambled eggs out of a pan with greater and greater ferocity.
Then suddenly the work of scrubbing is no longer enough to contain the dark boil in my chest. I turn around to face the kitchen and scream a scream that has no discernible meaning, only brute angry force. The scream feels excruciating coming out of me, and leaves my throat a raw, pulsating mess in its wake.
Mike is just behind me, getting some milk for his coffee. I see his startled expression; he is caught in the scream's path and it seems to enter him. A hot dry wind tears through his nasal passages and down his throat and fills his ear canals. It is searing and terrible. The scream enters his bloodstream and lymphatic system and lungs and makes everything burn. His skin is red.
Then as abruptly as it started, the scream is finished. Before me Mike quickly begins to cool, the hot wind leaving on a long exhale. As the burning redness of his skin abates, the evil yellow cancer begins to ooze. It comes slowly and steadily out of every exit route Mike's body has to offer. It is disgusting, stuck in his hair and sliding out of his nose. It takes what feels like an eternity to drain out of him, but it's probably only one or two minutes. Then Mike takes a shower while I hug the frightened children and reassure them that everything is going to be okay. When he comes back downstairs, we leave the cold coffee on the counter and go out to breakfast to celebrate.


3.

Usually when I cry out of a sense of desperation and protest (a rare event, because my day to day busy pace typically holds those kind of helpless sobs at bay) I feel alone. Without realizing it I fold my body in on itself,  covering my face, pulling up my knees, curling into a ball, tensing every muscle. Maybe I'm trying to protect myself from something terrifying that I have no control over. The awful cancer boot hovers overhead. Don't hurt me.
But this night I am crying next to Mike on the squishy couch, the children all in bed, the street light shining yellow into the living room, and instead of closing, I open. Instead of withdrawing, I cry harder and reach for his pale hand.
My face is hideous with tears and the sounds I'm making are just awful. Even so I draw closer to my sick husband. He is nauseated and pulls away from me; sometimes physical contact makes it worse. Meagan, Mike says. Stop. Don't touch me right now.
I jerk away, and a few drops from the torrential streams pouring out of me scatter on the couch. One manages to land on his forehead. And I watch as the tiny wet mark sparkles for a moment and then begins spreading outwards. The skin on his face becomes ruddier and shinier. The tear is the center of a gentle yet powerful ripple of magical health and energy that rapidly transforms every part of Mike as it moves across him until his entire body is glowing and warm. Little Disney bluebirds and twinkly stars appear and dance around him and a chorus of soprano angels sing triumphantly. He sits up, looks at me and says you know Meagan, actually, I feel pretty good.


4.

One morning I wake up and discover that none of this ever happened. There are no oncologists' numbers programmed in my phone. There is nothing but multivitamins, Advil, and band aids in the cabinet over the fridge. There is no anxiety at the pit of my stomach. My children wake up and go about their days, having no awareness that there are problems any bigger than having a mother who shows up late to pick up and not being allowed to wear make up in the seventh grade. They don't look at each other nervously when I get emotional. None of us get panicky, imagining cancer, when we find an itchy spot on an elbow or have a cold that takes a long time to go away. I carry the same small private tragedies around in my heart that I used to, go to the same places, eat the same foods, text the same friends in the same old ways, get excited about what I'm going to cook when friends come for dinner, negotiate child care and time to exercise with my husband, read a magazine in a doctor's office without even registering the ads for cancer drugs, imagine a summer vacation without hesitation, worry about the budget, wish I had smaller feet, vaguely feel that I am not doing enough, not being enough. I contemplate the future casually, and never suspect that it might not come.

*     *     *     *     *

Actually, scrap number four. I don't want this never to have happened.

Today at work I was listening to a refugee from Africa tell me about what it's like when she thinks about her past. She can barely breathe, and her heart aches. Sometimes she's overwhelmed and worries something is wrong with her.

The past leaves grooves on your skin. Deep grooves on your heart.

We spoke through a phone interpreter, so who knows how accurately he captured her words. In any case they took my breath away. Outside and in, body and mind, heart and soul, the past marks the whole of you.

Now I am forty years old, generously lined with the grooves of the past two years. Maybe God is planting something in this rutted, furrowed field. How strange to realize that while I yearn for Mike to be healed - healed completely so that there isn't a whisper of disease left - I also don't want to give up any of the grooves this painful journey has left on my skin, on my heart.

rebel girl

Around nine o'clock last night, after I said goodnight to Beatrice and Gabriel, I put on my shoes and headed out of the house. Frances was at a birthday party three blocks away that was coming to a close. I have a reputation for arriving late and I prefer not to give my children any more examples than necessary that they can use against me.

But as soon as I felt the breezy warm evening air against my bare limbs, my whole being slowed and relaxed. Suddenly there was absolutely no rush whatsoever. Thousands of summer nights past -  in a car with the windows down, sitting on cooling sand by the ocean, talking on a front porch, walking home late from a party - all quietly melted into the present moment.

Some people complain about the humidity on the East Coast. Okay, I do too; usually in late August when the whole thing is getting old. But I challenge you to complain about humidity on a June night when everything feels gentle and hushed, and the air has a pleasant comforting weight, and you are walking to the music of your flip flops slapping the cracked sidewalk and a few birds who are up too late, and the sky before you is glowing faintly behind the shadowy buildings and trees and telephone poles with the tail end of the sunset, peach and yellow, and fireflies's tiny flashes are just getting started. Then the humidity is perfection.

I thought about Frances, how she was at a party that ended at nine, how she is nearly twelve years old, how she is going on tour with her choir next week and will get on a bus with many other middle and high school students headed towards Michigan and not return for five days.

It often feels very weird that your children grow up. It also feels weird that your children aren't you. They are part of you, but so strangely and utterly separate. They think and behave and feel differently.  Weird.

But lately, it hasn't really unsettled me that Frances is getting older, nor that she is herself (instead of me, or Mike, or anyone else). I notice these things. It's hard not to - what with all the independence and borrowing my clothes and responsibility and general brilliance shining all around her going on. I notice constantly. But mostly, lately, I enjoy it.

Years ago Frances asked me not to use pictures of her or write about her here - at least not without her permission. Once upon a time she inspired many, many blog posts. Now I am in the habit of composing the posts about Frances in my head, and leaving them there. But I think this one is okay (right, Frances?) because it's mostly about me, and what it has been like to mother my rising seventh grade daughter.

Yesterday morning, I went on a run. I've been feeling very plodding and lazy on my runs lately, so I brought along my phone and listened to a Spotify mix. Around mile three, when I was about ready to shift into a walk and head home, I heard the thrilling, driving drum beat that opens Rebel Girl.

That girl thinks she's the queen of the neighborhood.

Oh man, I love that song. I let it propel me forward and fill up my mind, so that I dropped the worries I'd been carrying and simply ran.

That girl she holds her head up so high
I think I wanna be her best friend, yeah

In that open energized mental space it hit me: Frances is that girl! She's the rebel girl. Maybe this song is about my daughter.

I think I laughed out loud.

I had always identified with the singer. I admired rebel girls, usually from a safe distance. I slouched, spoke quietly, bit my nails (still do). I lacked their charismatic boldness but I seriously loved to be around it.

I've seen Frances hold her head up so high. I've seen her be assertive and generous in so many ways lately: performing, writing, with friends, in her school community. I won't say too much and risk encroaching into forbidden territory by writing directly about her. But I know as she has done the hard work of growing up in the midst of our terrifying family struggles over these past two years, I've often had moments where I stood back, puzzled, and thought, "But I would never have done/said/thought that at her age." Or "I would never have had the courage to audition for a solo." "I'd never have talked that way to an adult." "I'd never have worn that."

All true. In those moments I sometimes felt a faintly scary alienation, a mystification about this passionate girl who began her life inside me that made me nervous. I've turned to my mother and said, "I was so different at her age," and she has concurred. Sometimes I feel irrationally irritated. It can all be very weird, I tell you.

But something about Kathleen Hanna's voice took that unease and turned it into a kind of triumphant delight. Frances is different from me. I don't want to be her best friend, but I think other girls might. We all admire her forthrightness, her fast mind, her penchant for fashion.

So after the party, on the walk home through the June night, I had to tell her that I thought she was rebel girl (Mike introduced her to the song years ago). I told her about my run and how the song had struck me, how I loved her ability to say what she means, to claim her own space; how I loved her, admired her, how we were different and how that was definitely okay.

Did any of it make any sense to her? Probably not so much. I was effusing; we were both tired.

There are so many summer nights ahead for her, and most of them will be without me at her side. Frances will do so much that I have never done and never will do, in a way that is all her own. It boggles the mind. Our rebel girl is just getting started.