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. 

silver lining

One of the patients I see at the clinic where I work is almost exactly my age. She's from another country. She always looks elegant, even when casually dressed. I could listen to her beautiful, expressive, precise Spanish all day. She contends with a lot of hardships in her life, and though she has a family and a church and even extended family locally, true social support eludes her. She presents herself flawlessly but she is devastated inside.

During our first visit I noticed her silver and gold watch flashing beneath the fluorescent lights of my office. It always reads five minutes til one. Maybe she can't find the time to get a new battery; maybe there's something really wrong with it that she doesn't have the money to fix. Maybe it belonged to someone special - she has a sentimental attachment and it doesn't matter if it works. Whatever the reason, it makes my heart ache every time I see it, which is every time I see her.

I feel sad because it says something about an outside/inside disconnect; a fear of being seen. Can a broken watch protect her? From a distance the shininess says success, independence, money. But up close it just seems to emphasize the brokenness within that she is trying to hide.

I first noticed my gray hairs in graduate school. I remember looking in the mirror with surprise, fingering a few strands and wondering if stress was the culprit. By my early thirties I had quite a bit of gray, mostly isolated in one little patch which I told myself would develop into a supercool, dramatic Cruella de Ville style streak. That's not old. That's punk rock.

But by the time I had Beatrice it was pretty pronounced and new sprinkles were cropping up everywhere. How could I have a new baby and a gray head? It seemed wrong. So I would periodically have it colored. I tried different approaches whenever I felt like I could spend the money and time (which was infrequently) and felt really, really ambivalent about the whole thing. It is so not punk rock to do something like color your pesky stubborn gray roots.

Ask my mom, my sister, my best friends: I went back and forth endlessly. I would write lengthy emails and appeal to them to tell me if I was obligated to dye it, or obligated not to dye it. Was it morally bankrupt, this covering up my gray? I have never minded playful hair color, but hair color applied for the mere purpose of denying a natural process that is well underway...?

I began to notice that lots of women dye their hair. It was a terrible, tacit conspiracy. If everyone dyes their hair as they age, it makes it that much harder for any one woman to tolerate the gray, let alone embrace it.

I had a breakthrough about this last fall, when Mike was terribly sick and I was terribly exhausted taking care of everyone during his chemo and radiation. Every superficial concern or worry seemed to miraculously recede. I thought: this is NOT a moral question. It's not worth any more hand wringing. If I don't want gray hair, I should JUST DYE IT, as often as possible, and enjoy the results. There are big deals in life, and this is not one of them.

But friends! Stick with me just a bit longer. Though I think that realization was true, I have had an interesting turn of heart and mind about this whole thing.

We've been through yet another heartbreak with Mike's cancer treatment. These past weeks have been so hard: we thought he was in remission, but then some late arriving pathology revealed that his disease has in fact cropped up in another part of his body. We had been trundling towards a stem cell transplant, but now we have to recalibrate our expectations and lives once again and put our hopes in more chemo that will get him to that transplant this spring.

There's been a lot of procedures, coordination, intervention, travel - and my neglected head is absolutely sparkling with long, defiant gray roots. But now? Now, it's just crazy, but I feel eager for them to grow. Show yourselves! I would like to see my big head of hair as it really is, beneath the layers of dye - a long salt-and-pepper mop. I would like to see my face framed by the dark and light of it.

Roots, to me, have always looked kind of tawdry. Seeing them on my own head could stir up a mini bout of body hating - and/or situation hating - like, look at the proof of my poor, tired, no-fair life! World, behold: I am the kind of woman who can't take 3 hours away from her responsibilities to maintain a tastefully youthful-ish appearance. Worse still was the time I knew I couldn't find a way to see wonderful Courtney at the salon and so did it myself with a box. The roots came out a shade lighter than the rest of my head. Excruciating, I tell you.

It's like red lipstick on a tooth, or a pair of underwear rising up above the waistline of your jeans when you bend over. Wearing a nice watch that doesn't work. When careful artifice slips out of place, the underlying vulnerability veritably screams. Why do we cringe for the woman whose slip is showing? Her humanity is revealed. Maybe she isn't supposed to be human. Maybe we can barely tolerate our own vulnerability, let alone other people's.

Anyway. I didn't want to keep setting myself up to feel terrible every six weeks.

But there is something else within the core of my eagerness to see what my real hair looks like.

When Mike used to talk about what retirement would be like (perchance a modest apartment in Brooklyn and many excellent movies?) or the kind of old people we would become (grumpy, frank, and oh so wise), I would respond in the voice of abuelita Dolores, a world-weary child of Franco-era Spain and my host during a semester abroad. When I lived in her Sevilla home, I'd go to class in the morning and wave as I left, cheerfully calling see you around three for lunch! She'd settle deeper into her chair, sigh deeply and say si Dios quiere. Good night Dolores! See you in the morning. Si Dios quiere, carina. I'd roll my eyes. Man, she expected disaster at every turn.

Dolores had seen her share of unexpected heartbreaks. She didn't take anything for granted. Losing my dad so young - carrying the sadness that my parents were never able to enjoy the gift of old age together - made me skeptical that it was something I could depend on in my own life.

But growing old together isn't something that happens in a remote future. It's something that we do every day. My husband and I are aging together, which is exactly what I've always wanted. No matter what our future holds, this day was one that Dios did queria after all. And if I cover up my gray hair, it feels like I'm denying the gift I am offered every morning: another day of growing up and growing older with my husband.

I think this new way of seeing the signs of aging might actually stick, because it is no longer about doing the thing that I think I should do, but rather doing the thing that I want to do. That I've always wanted to do. It's about opening my eyes to my own life's richness.

Heck, I might even be able to do that and eventually return to the hair dye. But for now I hope I will see the silver lining my scalp as a reminder of the bounty of this moment, and of all the moments that have come before.

community building

Yesterday dear Edith sent us a photo from Vermont in 2009, a summer gathering of friends and family on her family's green, green land. There we are, three families, younger and shinier, the smallest members of our growing clans not yet born. I have baby Gabriel on my hip and little Frances stands nearby. We all look rumpled and happy.

Yet I felt overwhelmingly sad when I saw it. I don't think it is for the reason you might imagine - that we were young and innocent and knew not the ravages of cancer. Rather, I saw the sadnesses and frustrations of that moment, a time when I often felt lost and alone. Marriage with two little ones and a demanding job (my husband's) was painfully difficult. I was living in a new town, staying home with the children, disoriented and often irritated, at a loss as to what I should eventually do with my own life - if 'my own life' was a category that even still existed. It strikes me now that this blog, begun around that time, was born of desperation.

One night during that visit, as we were all cooking together, I told our friend Mike that I felt nothing I did contributed to our greater community. That my life was about nap schedules and wiping up applesauce and changing diapers. Nothing I did mattered in any bigger way to the world around me.

Meagan! He said, looking at my with sincere surprise. You are doing the most important community-building work there is. You are growing a family. What matters more than that?

I burst into tears, knowing he was right, knowing I still feared I would disappear.

I listened to Christian Wiman deliver an essay that David Brooks brought to my attention in his wrap-up of the year's excellent writing while I was recovering from a migraine the other day. In it Wiman says people who have been away from God tend to come back by one of two ways: destitution or abundance, an overmastering sorrow or a strangely disabling joy. 

I don't know that I've ever been away per se, though I have never enjoyed the closeness I imagine is possible in this life. I've always been aware of that strange subterranean longing, and always stumbled about in a halting doubtful mixed-up way in an effort to draw closer to God. Or at least consider drawing closer to God. There's never been a dramatic moment of return - maybe, rather, a series of botched attempts. A chain of acute moments of yearning, fear, wonder that have beckoned me beyond myself. Many, many Sunday mornings in the pews, singing with a simultaneous ache and flutter in my heart, tears at the ready, a crack in my voice.

That moment of early motherhood was one that encompassed overmastering sorrow and disabling joy. The ache and the flutter. I carried the burden of feeling lost heavily upon my back, but not a day went by without it slipping off for an immersive swim in the flood of joy and peace that a long gaze into one's baby's eyes releases. The all in way that young children - that my particular young children - encountered each moment was a gift to me. They offered a new quality of presence to my days: their exquisite wonder at the way milk swirls into Mama's coffee, or the unpredictable course of a rain drop down the window pane, or the spinning tires of a garbage truck. Who needs a subscription to Headspace? Just hang out with a two year old.

And I could blame social media or the alumni notes section of Swarthmore College's magazine for my inability to sink into the quiet pleasures and satisfactions of taking care of my children without ambivalence poisoning the well. But that's not really it. It's something deep in me, deep in our culture, that demands one justify herself. Earn your keep; succeed in life. Dream big. The sky's the limit!

Ah, well. I have not started the bilingual family-friendly mental health center of my dreams. I have written no books, achieved no fame, made very little money. I'm still chipping away at that damn elusive LCSW. It's been over seven years since that photo was taken, and I am still sometimes accosted by the fear that I have nothing to show for it.

But I would much rather be the me that I am right here, right now. Dwelling as we have over the past year and a half in this alien cancer world has brought my focus more into our home and less into the world than ever before. In some ways it's a greater intensification of that other time with two little ones, funneling so much of myself into my family. Yet I don't doubt the existence of myself now. Most of the time I know that what I do matters. The work I do as a therapist affirms it every day. We grow and experience our very realness in the context of relationship. So nothing much has changed; everything has changed.

I've spent more time with my husband since his diagnosis than I've probably spent with him over the entire course of our relationship up until that point. A few of cancer's strange gifts: transforming my love for my husband into something raw and palpable, something stubborn; strengthening my marriage; demanding emotional honesty from me (nothing else works when you're anticipating a fast-approaching stem cell transplant).

Cancer has helped me settle in with my children too; settle in to the sorrow and joy of every day with them. It has helped me to say yes, to welcome it all. On one of these rainy lazy Christmas break days, Gabriel and Beatrice and I decided it was time to tear ourselves from games and books and go to the park. It was so dreary out, but we made it to the playground where Gabriel suggested we play tag. The sky was white-gray overhead, the mud slid beneath our shoes, the air was stabbing cold in my lungs. I wished I'd worn a hat. He ran so fast, every time I thought I had him I'd reach out wildly and he'd dodge. We pursued each other all over the field, with Beatrice screaming and doing her best to keep up and me laughing and yelling, completely out of breath, unable to catch my boy. Then he slowed suddenly, grinning at me, who could not stop in time and slammed into him, bringing us both down hard on the cold wet grass. Then Beatrice flung herself on top of us.

Exhilarating, it was simply exhilarating, looking up at the stark sky and the laughing faces of my kids, feeling the mud soak into the seat of my pants, the delight of it all alongside the ragged sadness tearing around the periphery, of time passing, of loss, of terrifying unknowns ahead.

Overmastering sorrow and disabling joy. At the same time. Thank you, yes. I'll take it. It wipes away the fog on the windshield, that I might see a little more clearly. My worldly ambitions still tug on my sleeves. A loneliness bubbles up that urges me to dwell on surface deficits in the hopes of stoppering its source: the weight I've gained, the gray hairs I've accumulated, the things I haven't done. I get stuck in that sometimes. But still I treasure that cleared space.

This morning I read a column in our local paper by a priest named Father Wolf, whom I've heard patients at my clinic refer to affectionately as Padre Lobo. He quoted Pope Francis in a recent message:

The family is the indispensable crucible in which spouses, parents and children, brothers and sisters learn to communicate and to show generous concern for one another, and in which frictions and even conflicts have to be resolved not by force but by dialogue, respect, concern for the good of the other, mercy and forgiveness. From within families the joy of love spills out into the world and radiates to the whole of society. 

This time when I heard that I was doing the most important community-building of all, I could receive it without tears.

Happy new year to all of you, and blessings to you in all the often-invisible, thoroughly essential, generous work from the heart that you do every day. It ripples out into the world in ways we'll never know.

mysterious now

Today my 9:40 appointment didn't show, so I texted Heather to ask how Mike was. I had been so worried. He went back to New York yesterday, without me, for a procedure today and then treatment tomorrow.

She told me he had just come out, that he was fine, it went well. She described the waiting area, the hospital. She gave me the doctor's report.

I was sitting at my desk in a small windowless office in Pennsylvania, hunched over my phone. That moment happened. But as I read and reread Heather's text, other moments happened too.

All the long minutes in waiting rooms; all the strange, too-bright hospital spaces. The port, biopsies, PET scans, radiation. The waiting. The white/gray palette, the fluorescent lighting. A doctor walking at a clip across the rows of chairs to give his report. Me, suspended in molasses, an odd mix of breathless anxiety and leaden limbs, struggling to find a breath. His manner is particular to certain kinds of specialists and surgeons; it somehow combines excellent eye contact and intensity with a clear message: please allow me to manage this exchange so that we can complete it within about six minutes. Don't ask too many questions. Good? Good.

Oh, how could it be Heather there, and Mike there, and not me?  I know that moment. It's in my bones. It's a combination of moments, just beneath the surface, ready to bubble up and break into my right now with a simple glance at my phone.

We got our Christmas tree about a week ago, and spent Sunday afternoon pulling out decorations. Some of you may remember that last Christmas Mike was just completing what we thought was his one and only awful treatment, a chemo-radiation-chemo sandwich that made for the most challenging fall this family had ever known. We were living in a rented house with many borrowed things, and didn't have access to our holiday decorations.

So friends and family sent us ornaments: beautiful angels, stars, Santas, snowflakes, woodland creatures, elegant glass spheres.

Boy, was that overwhelmingly generous and kind and Christmas-miracley. We opened so many little packages last year. I labeled each ornament with the friend's name who sent it. The children loved it. Our tree was so beautiful.

And those are the ornaments we unwrapped last week. Usually a dig into the box of ornaments is a sweet journey through so many times and places: my second grade class, Frances's preschool, Mike's first Christmas, the year Gabriel was born. But this year we traveled to just one time, one place: a year ago. A gentle, worn-out time. We thought we'd made it through the worst of it. We knew we were laid low; we knew our friends and family were with us. We were looking ahead with full hearts to a time of recovery and healing.

We didn't know what was coming. It's been a hard year.

Those ornaments exacerbate the absurdity of living another cancer Christmas. How has it been an entire year? How can the way we were, the way we are, the way this year has unfolded, all be true? How can we endure it, surrounded by these achingly poignant symbols of hope and love and healing in the living room?

Early in the decorating process, Beatrice pulled out the popsicle stick ornament pictured above and gently unwrapped it, laying it on the rug. She looked up at me.

This ornament makes me cry, she said.

Why? I asked.

Because. It's so beautiful.

Then I kneeled down with her. I turned it over. 'Annie' was written on the back in black marker. She's a teenager at our church in Annapolis. Every Monday night we used to go to church and the kids would practice acolyting or singing and often a craft project would be going on in between activities. We had been the occasion for a craft project last Christmas. Annie and others had made popsicle stick and glitter snowflakes and sent them to us in a big box.

I sat admiring it with Beatrice. Mike sat down in the chair next to me and rested a hand on my back. I leaned my head on his knee and cried. She asked me why I was crying.

Well, duh, Beatrice.

Because it's so beautiful!

So many nows are achingly vivid as my family enters a second turn of the seasons living with a terrifying disease. The children's faces are exceedingly beautiful. Their bickering, too, is unbearable. The shape of branches against the evening sky is so stark. The yellow leaping fire in the fireplace is extra compelling. The Christmas music is more heartrending than ever.

These saturated moments linger, slide together, overlap, and make time into something else. Something more mysterious. How can it be that that was yesterday, a week ago, a year ago? I cannot begin to fathom it.

I finished reading Little House in the Big Woods with Beatrice tonight. We've shared those beloved chapters with various listeners over the past few nights: Frances and Gabriel, Tessa and Annika next door, the dogs, Kate the babysitter. Everything grows still. Part of the magic of the book is the slow, immersive quality that marks Laura's experience of time; reading it aloud is a way to participate in that alert, attuned stillness.

She intuitively understands something about the way time feels sometimes: a moment can be so full of itself. It overflows with realness. That kind of vivid experience can invite you further in, and somehow also make you notice it, linking you to moments like it that have happened before and will happen again.

Laura is inside and outside time. The immersive moment can be so extraordinary that it invites her to stand back and marvel.

The book begins in the fall, and ends in the next fall, just as winter is approaching. Just like now.

Pa plays his fiddle as Laura and Mary fall asleep. In the last passage of the book, he plays Auld Lang Syne. Laura asks him what the days of auld lang syne are, and he tells her they are the days of long ago, and then tells her to go to sleep.

But Laura lay awake a little while, listening to Pa's fiddle softly playing and to the lonely sound of the wind in the Big Woods. She looked at Pa sitting on the bench by the hearth, the firelight gleaming on his brown hair and beard and glistening on his honey-brown fiddle. She looked at Ma, gently rocking and knitting. 

She thought to herself, "This is now."

She was glad that the cosy house, and Pa and Ma and the firelight and the music, were now. They could not be forgotten, she thought, because now is now. It can never be a long time ago.