can-be attitude

This morning I reluctantly said goodbye to my very sick husband, then an excellent friend came and collected my children to take them to an early church service, and by eight I was driving to my social work alma mater, Bryn Mawr, to take an all day licensure prep course.

On the way, I discovered If You're Feeling Sinister was in the CD player and so had the distinctive pleasure of singing along to every song. I first encountered that album nearly twenty years ago (it's shocking, I know! - but do the math, you'll see); it's tied up with the first months of my relationship with Mike, an essential part of the soundtrack to a string of dizzy, romantic, on-the-cusp-of-adulthood hours passed together in his tiny Williamsburg apartment on Metropolitan Avenue at the tail end of the twentieth century.

That's one of the benefits of falling in love with one's partner relatively early in life: so much of the music that moves me is somehow tied to us. Even the things we each loved in high school, before we met, seem to have been folded in - at this point I have embraced (at least in theory) countless obscure 90s hip hop lyrics as my own.

Anyway. I was driving through the lush spring green of Bryn Mawr (I had forgotten how beautiful it was) intermittently singing and crying and praying and worrying. When I hit the last track I could not help but belt out:

The best looking boys are taken

The best looking girls are staying inside

So Judy where does that leave you?

Walking the streets from morning to night

Judy! I heard your song about the dream of horses in a new way this morning. Sometimes there are simply no good choices to be had. Sometimes you feel sad and restless; unmoored.

I do things all day long. I make breakfast, and brush little rows of teeth, and bike to work, and take kids to baseball games and piano lessons, and chat with friends at the fair down the street. All those things happen, and often even go well, but a part of my heart is nearly always pacing. Like Judy. My heart is walking the streets from morning till night.

Having choices, solving problems, putting a can-do attitude to work - it's basically our birthright as Americans. Right? I love to make things happen. But our fragile bodies (and families and communities and planet) trouble that comforting approach to the problems of life. In the face of my own true love's suffering these past days, the limits of action - the poverty of options - are rough stone walls hemming me in. It seems all I can do now is suffer with. And pace, and feel afraid, and press my forehead against the cold stone.

And tell you guys about it.

Mike was admitted to the hospital while I was learning test-taking strategies this afternoon. His dad took him through the emergency department. I feared that would happen today, while I was away. He's there now, I hope resting well, and I am here at home, in between many loads of laundry, elbow-deep in a bag of tortilla chips.

I just remembered the next part of the song:

With a star above your shoulder lighting up the path that you walk

With a parrot on your shoulder, singing everything when you talk

Starlight, yes! It's soft and hazy, but gentle too. Dear friends, maybe - oh maybe - this moment of limits and uncertainty will prove more illuminating and more beautiful than we could ever now comprehend. 

in defense of unfettered neck access

Weaning a toddler doesn't sound too complicated - until you try it. At least for me, the whole process was more than a little bit agonizing. When each of our kids was about two, I felt ready to have my body back, not to mention ready to have a break from the challenges of managing demands to nurse in all kinds of uncomfortable places from my marvelously verbal children. (A particularly vivid memory: I am in the middle of a busy H&M beneath terribly harsh mall lighting, wearing our precocious ten-month-old Frances in a sling. She begins pulling at my shirt and hollering NURSE! NOW! NURSE NOW!! at a decibel clearly audible over the store's pulsating sound system. Nearby tweens stare open-mouthed in horror.)

That was the kind of situation I was motivated to leave behind us. But I also felt attuned to all the benefits for my big walking talking babies: the sense of safety and peace that nursing gave them, the magical way it calmed a tantrum or distress over a skinned knee, the reassurance it provided when we reunited after I had been away at work.

The slow, gradual process of putting more and more limits around nursing was different for each kid. With Beatrice, the less she nursed, the more she wanted to maintain soft-and-warm style physical contact with me in other ways. First came The Belly - as in, I need The Belly, Mama! Unless she was otherwise engaged, she wanted to have a hand planted under my shirt, as often as possible, regardless of setting or company. No matter if Mama was wearing a dress - she just ducked under the skirt and slid up an arm.

Good thing motherhood robs you of your modesty.

Gradually, The Belly became The Neck, which at least made it easier to keep my shirt on. If I were carrying her on my hip, or reading a story snuggled up, or singing a bedtime song, a little hand often wrapped itself around my throat. Strong emotions would lead her to squeeze at times, or worse, pinch (if I had a nickel for every time I have said gentle, gentle with my neck Beatrice we could have self-paid for that stem cell transplant).

Even though her hot little hands don't wrap around my throat as often as they used to, the big kids still tease her about it. And me. They say I look like an otherwise youthful mother with the curiously worn and wrecked neck of an eighty year old. Beatrice laughs. She loves feeling ownership over The Neck. (There's something there for my clinical friends who have a penchant for object relations theory.)

The thing is, I don't mind at all. I get it. At least, I imagine I get it. The Neck is part of my body, but it is something much bigger too. It's an anchor, connecting Beatrice to herself and her family and the solid earth beneath all our feet.

Yesterday I talked to a dear friend on the phone, briefly, in the middle of my work day. The sound of her voice never fails to give me a sense of peace; a break from the work of being 'on' and vigilant and responsible and responsive and anticipating the next item on the to do list. There is no thinking involved in the settling that happens - just an embodied sense of safety, of downshifting into a mode that suggests that in this moment, miraculously, there is no need to do, only to be.

The mere sound of her voice makes me feel like that - a pleasant weight, a long exhale, a stillness inside. Also the warm solidity of Mike when I lean into his side, the particular smell of my mother's neck (the neck!) in an embrace, the strong shoulder of a beloved friend that shifts to accept my heavy head, the smell of a cool damp green morning in the woods. The sight of a client's clear eyes in a very connected, focused-feeling session.

It is these moments that ground me when the unknowability and terror of our present circumstance threatens to break me into a million pieces and blow me away on a strong gust of dry wind.

I love receiving your kind notes and texts and emails. We just lived through an emotional whirlwind, overwhelmed by the awareness that countless supporters took time out of their busy days on Tuesday to help us convince our insurance company to reverse their denial of Mike's stem cell transplant. Things like that happen to us. It's extraordinary. People send us gift cards, dinner, offer to do our laundry, send beautiful notes and poems and art - and they've been doing it for almost two years now.

So that helps me to know cognitively that I'm not alone and I won't fall apart. That whatever happens, I will be able to still be me and still take care of my family - with the love and support of all of you.

But it is what I feel via my senses that helps my entire being know - heart, mind, body and soul - sustaining me in a mysterious way. Today's felt moments build on my own abundance of neck-anchors in childhood - nursing, being held, knowing a set of arms were open and ready to receive me. Things that can't be communicated through a screen: the feel of warm cat fur, swimming in the ocean, leaning against my sister in a church pew, the sound of my mother singing, my father laughing, ice cream cones on a wooden bench. And all of this is layered as delicately and thickly as phyllo dough inside me, and it is illuminated like sunlight passing through honey when I hear Edith on the phone, or climb into bed next to Gabriel at night, past present and future all gently aglow, saying you are supposed to be here, you are supposed to be you. It is good to be.

And all the cracks and fissures that these past months have lined me with, as Leonard Cohen reminds us, only make the light more visible; warmer to the touch.

After days like those earlier this week spent glued to my phone, I feel cut off from that solidity and warmth. I become disembodied. Sometimes I really do have to make medical arrangements and communicate with friends and arrange child care. Ask for lots and lots of help. So there's that.

But it's interesting that I usually feel compelled to check my phone constantly, to turn off the world around and my own body with it and sort of float through a Facebook or Instagram feed for awhile. Some unacknowledged part of me is always anticipating a piece of news that might just turn things around. Maybe Mike doesn't have cancer after all. Or maybe his doctor just found out there's a new cure and we can access it today. Maybe the Pennsylvania board caught wind of all the challenges I'm facing and decided to let me skip the rigamarole and just send me an LCSW license instead. Maybe if I just keep scrolling...

Those things aren't going to happen. I know. Yet I find it hard to break the habitual stance of phone-vigilance. Everyday life with its uncertainty and fear can feel so hard, and the little dark screen in my pocket offers something else. Yet when I leave everyday life, I leave everyday life - and with it all the sights, smells, sounds, and tastes that anchor me to this moment and to the created, beloved world.

Why would I turn away from it all for a minute more than necessary? Being a person is so very odd.

Despite my weaknesses, I do believe that as I age and those glowing layers of felt experience accumulate, a bone-deep confidence grows. Inhale, exhale, look up at the sky.

It is so very good to be.

gladsomeness

Yesterday was a good day.

It all started over breakfast. Everyone woke up late (it's the very tail end of spring break, and the children's wake up time has slid later and later, affording quiet morning moments that make me understand why some mothers get up well before dawn) and lingered over pancakes at the counter, chatting comfortably, telling stories. I think we shared memories about the funny things Bea would say as a toddler. She loves that. I found myself sitting back, enjoying the moment so very much: cold coffee in my cup, a warm kid in my lap, almost surprised at how deeply satisfying it felt to be part of this family. It was a rare, well-rested moment when I felt I had nothing to do - rather I had only to be, to partake.

Of course I wanted to extend this excellent partaking, so I decided that though my children had never known the pleasures of Saturday morning cartoons, it wasn't too late for them to experience the pajama-clad delight of starting the day in front of the TV. Before a single responsibility was completed - before nary a breakfast dish was washed - we cozied up with an episode of the Great British Bake Off.

I think it was the first time ever that all five of us agreed on and enjoyed an entertainment so heartily.

We began to plan our own bake for the afternoon as soon as it was over. Really, how many episodes can a person watch before deciding it's time to take a whack at a proper biscuit? The kids and I went through the website and settled on something pretty, simple, and way British-sounding: mini Victoria sponge cakes filled with strawberry jam and cream.

First they had to get dressed and do some chores, which I helped them with initially and then - then - I provided further instructions and went to a Zumba class at the Y. I really did! Mike has been sick and it's hard to leave when I know he is feeling so bad, but I decided I would lavish everyone with attention when I got back and the children had plenty to do and Frances is basically babysitting age anyway. Right? Right. Right enough. It was okay. I had gone to the class once before, about a year ago. Needless to say I was a stumbling Zumba novice in a room full of forty sweaty diehard hip swivelers. I saw a few friends there. It was really, really fun.

(There was a lovely smiling woman who was probably in her mid seventies to my left. Let us all aspire to shake it to some pounding reggaeton when our hair is silver and our grandchildren are old enough to drive us to Saturday morning Zumba.)

I got home, damp and renewed. All of the children wanted to come with me to the store. We had a huge shopping list and couldn't find American versions of the British ingredients, yet everyone kept it together. We ran into Amelia and she too was procuring supplies for some inspired afternoon baking. I felt so happy to see her.

We baked our mini cakes without incident. I got to pipe whipped cream in a particular pattern on their yellow spongey insides, then spoon on red sticky jam from the pot so that it ran in rivulets between and all around the cream barriers. I highly recommend this activity. Some friends and my mom came by; Mike came downstairs. We ate our victoria sponges with peppermint tea.

A quick trip to the library followed. Here is a poem summarizing the experience:

mistakes were made
fines were paid

Also more books were checked out, to facilitate a few more hours of sprawled-on-the-floor, no-end-in-sight style reading before school begins again.

(Don't you miss that? Will we ever know that way of reading again?)

I wanted everyone to keep feeling great, so I played dinner safe. As Father Badger says in Bread and Jam for Frances - and by the way I am very grateful that those books are front and center back in my life again, and I seem to still have them all memorized - most especially the songs - which I still sing to the same tunes I made up when reading them for our Frances ten years ago -  "Spaghetti and meatballs is a great favorite with everyone!"

He's right. The kids were so pleased.

Then I snuggled with Beatrice on the couch under the soft white blanket, listening to the clink and clatter of Mike doing the dishes, Frances and Gabriel already settled in with their books on the chair and floor next to us. We're reading More All of a Kind Family and last night, in a chapter about Hannukah, I read aloud the sentence "It was the time for gladsomeness," and paused.

Gladsomeness! Wow. Gladsomeness is distinctive, different from plain old happiness, or contentment, or joy, or gratitude. It captured my feeling about the day: so pleasing, so filled with small yet satisfying pleasures that seeped into our sponginess like sticky red jam. 

I continued and realized that Frances and Gabriel had both stopped reading their own books and were sitting very still, their brown hair shining in the lamplight, listening to the story about the children celebrating with dreidel and nuts at Aunt Rivka's house. When was the last time I read aloud to all three of them?

In another book, Father and Mother Badger wisely explain when Frances runs away in protest over her new baby sister that though babies are nice, a baby is not a family. A family is everybody all together. 

That's how I felt yesterday - that some magic had swept through our house, quieting the bickering and strain, and we were simply everybody all together.

It was still a day punctuated by worry about Mike: the sound of his coughing, the sight of his wince, the impossible wait for his current treatment to please please work. It has become less strange lately to hold such extremes in my heart simultaneously: knowing both the goodness of our lives and the terror of how seriously they are threatened. And of course no matter the modest delights any day offers, a deeper peace is impossible while one of us endures relentless suffering.

My ability to be aware of this life's abundant riches - to taste and see - is a gift that confronting life's fragility has given me. My cup runneth over. I know this. Goodness and beauty generously slosh and stream down the sides, puddling around its base continually. But it is as if my cup has slid and settled dangerously close to the edge of a tall countertop. If my husband is taken from me, it will surely fall and smash into a thousand pieces. And if that happens I do not know how I will taste anything at all.

arm toucher extraordinaire

Late Friday afternoon I guided our minivan up to our house, executing one of my signature disastrous parallel parking jobs involving the curb and many torturous back-and-forth adjustments. I finally decided to leave well enough alone and get out, releasing Beatrice from her seat, when I noticed our neighbor Tessa reading on her front porch steps. At twelve, she's too young to laugh at my driving. Or maybe just too sweet. In any case, Beatrice and I gravitated towards her gentle smile and sat down next to her in the strangely warm February sunshine.

She looked at me, grinning. 'Frances pretended to be you at theatre club today.'

I immediately cringed, thinking of all the things she might indirectly vent about, with great dramatic expression. Did she try to enforce spinach on anyone? Expound on the merits of a phoneless adolescence? Try to make someone do a chore?

'No, nothing bad! She was just...acting like you.' Giggle, giggle.

Oh boy.

Later Frances told me the assignment was to choose someone she knew well and walk in that person's style. Embody them. My mom was running the club and she knew who Frances was right away. Apparently, she/I touched everyone's arms while effusing about the beautiful weather and how much she/I absolutely loved going on a family hike and isn't this the perfect day for a hike?

Frances told me that she'd been sincerely proud of herself. She thought she nailed it.

Arm touching! Again I am accused of being an arm toucher. The first time was by Mike (who I thought coined the phrase, but maybe it's a thing) after an event with the nonprofit I then worked for. We were at a Barnes and Noble somewhere in Manhattan. I was probably 21. Apparently after the program he sat back, waiting for me to finish up, watching me touch every damn arm in the place while I smiled and chatted away.

(I imagine a mixture of attendant feelings - bemusement, fondness, fear, a smidge of dismay -  blossoming alongside Mike's dawning realization that night. Oh dear lord, thought he, I've fallen in love with an arm toucher.)

(Perhaps it was not unlike what I experienced when we moved from New York to Philadelphia, Mike's urban center of gravity growing up, where I soon had to confront the surprising fact that I was going to marry a sports fan.)

Well. I never have been good at concealing the true internal state of affairs. In elementary school I cried easily (oh how I hated that, feeling so exposed). I've been known to ask near strangers to borrow a tampon. I dance at the wrong times and in the wrong places (ask my children, who are beset by embarrassment on a daily basis). I fondly wiped stray lipstick off a teacher's tooth I was saying hello to at my children's school recently. I like her so much, but really, do I know her that well? Well enough to put my pointer finger in her mouth?

And gee, come to think of it, I've been writing about my life on the internet for many years. Boundaries? Never heard of 'em.

But lately (see aforementioned lipstick-wiping incident) I think I've been more - to put it mildly - porous than usual. I hug everyone. I tell anyone who innocently asks me something along the lines of how are you the date of Mike's next Keytruda dose and the details of Beatrice's latest tantrum.

Over the past couple of years I've had to explain our family's situation to countless strangers and acquaintances - new teachers, customer service reps, potential tenants, doctors, coworkers. At first I couldn't do it without crying, sweating, or forgetting to breathe. I hated anticipating the other person's response. I would end up trying to manage my own and the other person's feelings, as they had no idea they were stumbling into a story about rare diseases and family struggle.

But now, six hundred tellings later, it's easy. I might even like it.

Our experience with an aggressive and relatively little known disease - and all the havoc it has wrecked with jobs, homes, and our general ability to anticipate anything about the future near and far - has only made the part of me that eschews boundaries and invites intimacy more robust. I've necessarily become more transparent than ever before, more unable to persist in maintaining the myth of my own independence. Knowing one's interdependence - emphasis on the dependence part - is humbling. We've needed so much help over the past 19 months. I can't not be aware of a certain new intensity fueling my habitual arm touching.

At least that's how it feels sometimes - a bit desperate. Probably tomorrow I'll read an article in the New York Times putting forth an evolutionary biology type explanation for the common female practice of arm touching. Surely some researchers have identified a complex interpersonal neurobiological phenomena that happens between the owner of a big strong arm and the toucher of that arm (who is probably really good at eye contact and effusing about hikes) that promotes her safety, thus protecting her from marauding saber tooth tigers and enabling her to pass on her arm touching genes.

Yes! The arm touching adaptation. Thank goodness my forebears worked that one out, because I've come to rely on it as my survival strategy. Though my tiger is NK/T Cell lymphoma, and I am apparently attempting to kill it with charm.

I don't have a specialized medical degree, or endless funds, or a live in nanny, or magic powers. I have so little power of any kind in all this. So I need our doctors to love us, and invest completely in Mike. I need our neighbors to help with the kids. I need teachers to shower them with acceptance and attention. I need my friends to be there and help me carry my burdens, to distract me with everyday worries and pleasures.

I need everyone to not get fed up with the sheer length of time we've been consumed by Mike's health, with the endless march of insurance fights and treatments and trips to see specialists. (Oh please, stick with us through this long slog whose end I cannot see.)

In short: we need a lot of love, kindness, and patience. The crazy thing is, everyone seems willing and able to give us those things. In abundance!

Yet still I persist in hugging everyone in sight. No lipstick-smudged tooth is safe around me. I don't think there's much to be done about it. So dear ones, I ask yet another thing of your generous hearts. Please indulge me - and endure my affections and tendency to overshare. Forgive me for playing with your kid's hair, for saying more than you expected, for giving your arm an extra squeeze, for asking about something personal, for getting excited about your new shoes. It's my way of saying thank you, I love you, your kindness means a lot, please be there for me tomorrow too.