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.

ode to mrs. ramsay

This morning I was standing in my bedroom in a bra and unzipped pair of pants, contemplating the work-appropriate sweater options before me in the open armoire, when Beatrice quietly stole into the room with a blanket wrapped around her shoulders. A forest elf in a brilliant green bean-colored cape. I turned and she burst out laughing, delighted because she had surprised me.
She began chattering to me about how she would like to pick out my outfit, and how she was disappointed that I was wearing pants and not a dress today. Then she asked if I would help her spread out her blanket in the center of the floor.
We shook it out, watched it billow onto the carpet and then smoothed it flat together. She happily plopped down in the center of it and looked up at me and said with great satisfaction: now I have a Mama-watching mat!
I smiled at her. She smiled back at me. And our chatty Beatrice leaned back on her hands and stretched out her legs in front of her, rolling them back and forth so that her toes kissed repeatedly, quietly smiling and watching me pull on faded socks and tie up my ankle boots. She watched me walk into the sunny bathroom and wash my face. She asked if she could pick out some jewelry for me to wear.
Yes, please. Whatever you think would look good.
I put all her selections on - all my fanciest things. I later took most of it off. But she loved watching me clasp the pearls and slide in the sparkling hair combs.

I've been rereading To The Lighthouse. A fleeting reference was all it took for me to go back, drawn in particular (as ever) by Mrs. Ramsay. I feel a new kinship with her. Something has changed since the last time I read the book, a few years ago.

I don't know that I've ever read anything that so fully inhabits and imagines the interior experience of creating cohesion and balance at home--building and sustaining a rich domestic life that feels deliciously natural for outsiders to partake in but is in fact the result of arduous moment-by-moment emotional work. Mrs. Ramsay is the center without which nothing holds. Her eight children, her husband, and even their many guests need her responsiveness, her attention, her quiet care. Everything about their summer house on the Isle of Skye--from the bulbs in the garden to the romances that bloom on the beach to the art and philosophy percolating on the lawn--depends upon  Mrs. Ramsay sitting in the window with her flashing knitting needles. They all look to her, at times desperately, to find their place in a world, in a family. She smiles; they are reassured.

They came to her, naturally, since she was a woman, all day long with this and that; one wanting this, another that; the children were growing up; she often felt she was nothing but a sponge sopped full of human emotions. 

Do they have any idea the effort that it causes her? Her youngest, James, seems to know.

The other night as I put Gabriel to bed he looked up at me searchingly.
Mama.
Yes?
Mama. Mama, Beatrice has been having so many tantrums. And Papa and Didi fight. And I just hide under a blanket and read. But you don't. You're always just...Mama.
I know.
But - you never get to be upset like the rest of us.

He was expressing worry about me, some recognition that the pressures on our family are so very great, and that it must be hard to always just be Mama and not run away or fight or scream. But I knew what he really wanted to know was that I would keep on being Mama, no matter what.

So I told him. I told him I love him and Frances and Beatrice and Papa, and I can hack it even when things are hard, and I won't stop just being Mama, ever.

(Even though sometimes I do want to hide and fight and scream. He's my fellow sponge. He kind of knows. But I think he was reassured anyway.)

Oh, how they watch me for signs of crumbling! And how intolerable it is for them when I read or talk to another adult or text or stare out the window, thinking. Be here for me, they each tell me in their own way. Be here for me, make me real, make my world safe and predictable, just be Mama.

It finally occurred to me this time, reading To The Lighthouse, that the entirety of Mrs. Ramsay's duties exist in this world of emotional and social creation. She is often knitting, which seems apt, as her emotional work is a kind of knitting together too: being kind to irritating people, reading fairy tales, including lost souls in the dinner conversation, making socks for the poor lighthouse keeper's boy. She doesn't do laundry or chop vegetables - she has the servants for that.

But the rest of us have to make dinner and make a family feel like a family. It's so hard sometimes. Children depend on us to never waiver - or at least to limit our waivering to predictable, minor fluctuations. Good luck with that.

Right now we five live with a throbbing, terrifying danger all around us (inside us, in Mike's case) that we find varied ways to cope with - forgetting, bravery, sadness, distraction, anger. It is a heavy burden for everyone, even as we are helped to carry it by many dear loved ones.

But always, always, I am aware of many searching eyes on me, depending on me to make waffles and jokes and valentines, to offer good morning hugs, to get irritated about piano practicing, to sing quietly at bedtime. To wear the fanciest jewelry. And even when my insides go hollow with the effort, with sadness--as with Mrs. Ramsay below--I pray I too can keep ladling the soup, and preserve the unity, safety and love of our shared family life.

But what have I done with my life? thought Mrs. Ramsay, taking her place at the head of the table, and looking at all the plates making white circles on it. "William, sit by me," she said. "Lily," she said, wearily, "over there." ... She had a sense of being past everything, through everything, out of everything, as she helped the soup, as if there was an eddy--there--and one could be in it, or one could be out of it, and she was out of it. It's all come to an end, she thought, while they came in one after another ... 
Raising her eyebrows at the discrepancy--that was what she was thinking, this was what she was doing--ladling out soup--she felt, more and more strongly, outside that eddy; or as if a shade had fallen, and robbed of color, she saw things truly. The room (she looked round it) was very shabby. There was no beauty anywhere. ... Nothing seemed to have merged. They all sat separate. And the whole of the effort of merging and flowing and creating rested on her. Again she felt, as a fact without hostility, the sterility of men, for if she did not do it nobody would do it, and so, giving herself the little shake that one gives the watch that has stopped, the old familiar pulse began beating, as the watch begins ticking--one, two, three, one, two, three. And so on and so on, she repeated, listening to it, sheltering and fostering the still feeble pulse as one might guard a weak flame with a newspaper.

Fueled by that flicker, she then bends towards Mr. Bankes, to ask him if he has found his letters in the hall. It's a Herculean gesture. That's just the way life is sometimes. Those private moments of will, of shaking oneself out of despair and into generosity. Where would any of us be without these kind of heroic acts, performed quietly around dining tables everywhere, knitting us to ourselves and one another?

missive from 8 lime

I am sitting in the big heavy rolling chair next to my husband Mike, who is dozing in his hospital bed, wiped out by the energy required to take a shower and get clean pajamas on this morning. We're back on 8 Lime, our local hospital's hall for cancer patients, where Mike was admitted Sunday night with neutropenic fevers. His current chemo regimen had taken his blood counts way, way down.

As the week got underway, the fevers continued, along with bouts of chills that cause him to shake and inspire a desperate helplessness in me that makes it hard to breathe.

Often when Mike is inpatient I feel torn between the hospital and home. I hate leaving him and I hate not giving my full presence to the kids, hearing about their days and making them dinner. I really hate not knowing what's in the fridge, what laundry needs to be done, who has a field trip form languishing at the bottom of their backpack. Being out of touch with the daily workings of my family is unsettling, disorienting.

But this time I didn't feel conflicted. Mike was suffering and wanted me. I wanted him too. The kids were well cared for. No hand wringing required.

I've slept here the last two nights, able to talk with all the rounding docs and know who his nurses are. That mitigates the helplessness, having a firsthand sense of his hospital world.

Something has shifted with this new chapter in Mike's treatment. It's the first time we've really confronted the possibility of his death together with any sustained attention. He began having symptoms after this new chemo began that suggested to us that his cancer might be progressing - despite the treatment - and we know from experience how aggressive this cursed disease is. How to be hopeful while confronting the very real possibility that all of this will end in tragedy rather than cure?

Well. That's not hard really. I don't think I am capable of *not* hoping. But now there is a new ragged awareness freighting my hope with sorrow. We've cried a lot. We've talked about the kids, what I would do, making sure I know my way around finances and passwords and tax documents. Then we've cried some more. And we talk a lot about love and faith.

This opening of a new grief has cemented in me something I've been coming to know throughout the course of this illness and all Mike's battles with it: I love him, completely. Our marriage gets better - anchored by more love, more honesty, more trust, more faith, more forgiveness - every day. I know now what a precious gift we've been given and I feel much more confident about tending it, taking responsibility for it, being there to receive it fully. Not everyone has the good fortune to live into a great love like this. (Not everyone gets to know that is what they are doing!)

So those paradoxically painful moments, acknowledging with Mike the magnitude of our love, open and strengthen my heart, helping me to bear the pain of this moment. 

But you can't really get into it too much in the throes of fever. These last days on 8 Lime have provided many distractions from that big overarching grief that takes courage to turn towards: I get to be mad about meds not arriving on time, or help make his bed, or talk to doctors about symptom management. There is, oddly enough, relief in that.

But also? Also, you guys, I would like to tell you about another distraction I've discovered. It's called online shopping. You can swipe through sales on your phone. Amazing. So far I've purchased one pair of pants - when battling cancer a nice pair of gauchos for spring can really make all the difference - but it's hard to stop there. Geez. My mom and sister are helping me acquire a new coat. The links are flying. Group online shopping is the best! Those two are dedicated to shoring up the precarious state of my soul - and keeping me warm and stylish too.

And then sometimes I sit and feel sorry for myself. I fret over my thinning hair (I had a check up last week during which every complaint I asked about was met with an apologetic shrug, kind smile, and the words "it's the stress" by my doctor). Thinning hair? Me? But it's true. Apparently all my weird recent body developments can be chalked up to stress, something I can presently do little to alter. Sometimes it's so damn discouraging. I feel like a wreck on the inside and the outside.

A grateful heart is quite nice - and I know it is just so beautiful that I can see the good in the midst of suffering - but hang on. Just hang on a minute. Let it be known that I am also a crying, self-pitying wreck who flees to the Uniqlo website and recently sent a loyal friend out to buy Rogaine. It can all be so mundane and disappointing and not uplifting too. Downlifting. Downsliding. A real fucking drag.

I only have the strength to hold the emotional and spiritual enormity of it all for short periods. The rest of the time I'm just doing my decidedly imperfect distractible anxiety-fueled best.

On the way home the other night to see the kids I prayed out loud. Driving through downtown Lancaster, I appealed to God: Come ON. God, just come ON. Just please. God, I am starting to get mad at you. Can you please come on and heal my husband? His suffering is enough. Come on.

It's been a few hours since I wrote the above. Mike's counts have recovered. He was able to eat some lunch. So far, no fever.
Maybe he's turning a corner.

Come on, God.