the lengths we will go to

Last week I was sitting next to one of my marvelous colleagues, waiting for a meeting to begin. I asked her if she was worried about developing a migraine - she was eating something I thought was one of her triggers - and she sheepishly confessed that if she did wind up a migraine, that would be okay.  It's the only time I feel like I can drop everything and really take care of myself, she explained. Her family knows to leave her alone, and she retreats to her dark peaceful bedroom, relaxing in the quiet until it subsides.

I thought of her on Sunday, sitting on the couch with Beatrice cradled in my lap: a long, hot, four year old baby snuggling her face into the crook of my arm. She had a fever. She threw up multiple times the night before. Too miserable to read a story or watch a video, she just wanted me. She would occasionally turn her face up towards me, gaze at me for a long time with her serious dark-fringed blue eyes, then sigh and snuggle back into position. You're still there. Good.

I was giving her spoonfuls of water, as one does, so as not to upset her delicate stomach all over again with a big guzzle (which is what she felt desperate for). She wanted to drink. She wanted to eat. I had to keep telling her, over and over, that we had to wait. Memories of the previous night (and my rather thorough clean up efforts, living as I do with someone whose counts are suppressed by chemotherapy) motivated me to stay firm.

Eventually Tylenol kicked in and she began to feel better. She watched a Tinker Bell movie. I sat with her for some of it. I already knew more about Tink and her fairy pals than I care to confess. After it ended, she turned to me with those big soulful eyes and said, Mama. I like having a sick day.

I thought back over the misery of the past 18 hours.

You do?

Yes! You get to watch movies and snuggle.

That's true.

Mama, you like it too. I know that you love to take care of me. 

She held my gaze when she said that, and behind her smile that lingered a little too long I detcted gritted teeth. She said it with finality; the tone and expression said don't you DARE disagree Mama. Just smile along and nod. YOU LOVE IT. That is all.

It's possible that Stockholm Syndrome had set in, but really, I did love it. I first had to make peace with missing an African dance class I had helped to organize. That hurt. But there on the couch, sinking into the cushions, peeling Bea's sweaty arms off my belly every now and then, I felt a deep contentment. There's no way around it when your kid is really sick. Someone has to stop everything, downshift from the whirring multitasking pace, and focus on fetching water and being a piece of human furniture.

The next day she was feeling a lot better but given the recent fever I dutifully kept her home from school. We painted our nails. Hit another Tinker Bell flick. Worked on a bit of art. Tried eating toast and bananas. It was awesome.

She was so sad and mad to go to bed that night. She writhed in her sheets and kicked her feet over her head while I sang her songs. The writing was on the wall.

This is the worst time of day, she pouted. I hate going to sleep all by myself, and when I wake up, I know I will be all better and have to go to school with Didi and Gabriel.

The migraine was over. Back to regular life.

Prior to getting sick, and since, Beatrice has been ragged around the edges. Super clingy, quick to cry. She protests nearly every time I leave her side, which is often. It sometimes seems she would prefer I quit my job, stop making dinner and doing laundry, send her siblings to boarding school, hire a personal assistant to take over Mike's medical management, and dedicate myself 24/7 to being a snuggly and cheerful Beatrice Needs-Meeter.

Is it possible for a four year old to unconsciously will a fever into full bloom so she can enjoy some much-needed intensive caregiving? She's too little to know about self-care; for her, mama-care is where it's at. (I'm with her on that one).

Self-care is a weird phrase. It sounds so clinical, when what it means in practice is things like watching a favorite movie and painting your toes with your daughter. Like, good life things. I'm put off by the idea that we have to pencil in "self-care" the way we pencil in dentist cleanings, soccer games, and work meetings. Being urged to prioritize and plan for self-care is a sign that something about regular life is out of whack. The whole system is busted when we feel there isn't time to see a friend or take a long shower or go for a walk.

A quiet yet rebellious part of me objects. I do not like these terms! I do not want to schedule exercise on the family calendar in order to get any of it! I want time, space, and breathing room to be part of the deal; I don't want to have to get sick, or have one of my kids get sick, in order to enjoy these things.

Full disclosure: I use the phrase self-care all the time, at work and in the rest of my life. I use the concept freely. I encourage the students I counsel to take care of themselves with intention, to make sure they are sleeping and eating and going outside (not always easy for newly independent people). I tell my friends to be kind to themselves, to prioritize time to do the things they find restorative.

However.

I just hate the way mindfulness and self-care are thrown around in our popular culture, in magazine headlines and health newsletters. 5 minutes a day to a happier you! Meditate your way to success! Don't question the scramble, the pace, the consumption, the systemic injustices, the emphasis on achievement and status. Just utilize these handy tools - it only takes a few deep breaths a day! or a pedicure once a month! - and you can keep going full steam ahead. 

I think I mean I don't like self-care talk when it shines like a tool designed to keep us cogs in the capitalist machinery docile.

This fall the family schedule is daunting. There's soccer, piano, dance, choir, after school activities. There's three different pick-up plans for the three days I work. Mike has to go to New York every Wednesday for treatment and he usually isn't well enough to help with transport and child care on the other days. When my kids were younger I used to observe families balancing multiple afterschool activities and judge. Harshly. What a useless scramble. What about time outside? Weird and creative pursuits, a la magic potions concocted in the kitchen or a new style of paper boat to float in a puddle? What about boredom, dreaming, looking for a friend to play with?

But here we are. I feel confused about how it happened. Today we have two piano lessons, after school drama, and a dance class. Then it's parent night for Beatrice's class this evening. I don't like feeling as if I am careening from one thing to the next. But it seems to be what one does. My kids' peers operate this way. My friends operate this way. The slight difference is we are trying to make it work in the context of battling Mike's disease, so resources are stretched pretty thin. With so little time to breathe, I sometimes feel as if I am in a barrel headed for the falls. How do you work the brakes in this damn barrel, anyway?

I yearn for a life in which I feel sufficiently cared for just because. In which my barrel slides into a quiet eddy and I climb out and rest my feet in the cold rushing water at the river's edge and watch blue dragonflies dart and hover over wet dark fallen branches.

Sometimes I see everything through the cancer lens. Conflicts with the kids, separation anxiety, my ball-dropping habit, my many recent cooking fails. Like, if only Mike didn't have this damn disease, I'd have this family thing tied up, tight. The kids would be happier. The pain of life would be lessened. But I know that a lot of this stuff just is. Nevertheless, part of me wants to ensure my kids have a 'normal' life; I want to deny cancer the ability to take anything away from them. Not a single choir rehearsal, not a single ice cream cone. I really do want them to have it all; trying to make it so is an act of defiance.

I suspect if I were able to cultivate more acceptance and quiet my anxiety about protecting my kids from the limitations of having a vulnerable sick parent, I'd be able to look around sometimes and say no you can't do that. No we can't come. No, we need time to be at home together doing absolutely nothing at all. You kids might not master a musical instrument or a sport. You might not wind up with a stunning college resume. It's fine to not be the best. In fact, it's fine to be good enough.

And we are.

Now let's put our feet in that cool water, and look for minnows.

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.