Monday, September 12, 2016

everything shared is better

Yesterday was the first day of Sunday School. Frances shrugged me off on her way to the middle school group. I walked Gabriel downstairs to his new classroom where he shot me one of his heavy-lidded, evil eye looks as I lingered in the doorway. It meant get out of here Mama, it's bad enough as it is without you embarrassing me. As I headed back towards the hallway with Beatrice, we passed an open doorway and a very nice woman called out to us. 

Are you coming to Sunday School, Beatrice? 

I hadn't realized she was old enough this year. We peeked in and saw a bunch of blonde heads bent over pieces of white paper at a small table, chunky broken crayons in use. I helped Beatrice pull up a chair and find some supplies, then leaned over to hug her from behind. 

She knew my intentions. She turned around in her plastic chair and clung to my neck like her life depended on it. 

You can't go, Mama! You have to stay with me! 

[Incidentally, I really do feel as if my kids are either pissed at me for staying or pissed at me for going most of the time; sometimes the same kid is harboring both feelings simultaneously. An impossible position.]

She could tolerate detaching herself physically but would not allow me to inch more than a foot or two away. So I stayed. A little boy who had a tiny row of stitches visible within a yellowing bruise along his hairline also refused to let his dad leave the room. We were two parents, two teachers, and six children between the ages of three and five in a basement classroom. There were shelves with simple storytelling props (wooden sheep, figures, pieces of colorful felt), and a model of Jerusalem that you weren't supposed to play with because the city walls were not staying together very well anymore, and a bulletin board with a single child's art on it. Someone named Bella. 

I knew I had to go home to pick up Mike before church started. I really wanted a cup of coffee in the parish hall. 

When everyone had gathered on the red rug in the center of the room, the kind, bright-eyed teacher greeted each child one at a time. She told them what they would be learning about and playing with and making in their class. Then she said, Did you all have a good summer? Did you have any adventures?

I hate this moment. A well-meaning adult smiles at one of my kids and says, "did you have a great summer?"

That suggests the norm is to have a great summer. Kids are supposed to have fun over the summer, and come September they are supposed to be happy to share with their teachers and friends all about their fun summers. Kids aren't supposed to have moved houses twice, to have sent their papa off to the hospital for a week at a time, to watch his hair fall out, to cancel vacation plans and visits with friends, to worry about their parents. And while our big kids did squeeze in some classic summer fun off with friends and grandparents, Beatrice is too young to be away from us. Her summer was, unavoidably, dominated by cancer and its repercussions. 

So when all the other children had shared about their favorite rides at Dutch Wonderland and how their daddy can jump higher than the biggest wave (how I wanted to muzzle that sweet boy), the teacher turned to Beatrice. 

Did you have a vacation this summer too?

Beatrice was quiet for a moment, knees to her chest, holding onto her shoes. I studied the shiny linoleum framing the carpet, harsh and bright where the fluorescent lights above were reflected. I bit my lip. Then I watched her dear face. 

Well...we are going to go to Massachusetts for a summer vacation, I think.

Massachusetts! exclaimed the teacher. Do you know where you went in Massachusetts?

Well, I know they have swimming holes there. And trails in some big forests. And mountains called the Berkshires are in Massachusetts.

The Berkshires! Beatrice. That's a big word.

It took all I had not to cry, and then a little bit more not to snatch her up and run out of there. Does she think we still haven't had our summer vacation? She knows Frances and Gabriel went with Gramma for a short version of it, while we stayed home. Or did she know that there were no vacations this summer, and why, and she was just trying to please the teacher with an acceptable response? Or be like the other kids with mommies and daddies and trips to the beach?

I wish we had gone to the Berkshires. I wish when adults asked my kids about their summers, they didn't have to hesitate and wonder what to say.

About a week ago, sitting on another red patterned rug, I told Heather and Mike about how when I read the Little House books aloud to Frances and Gabriel years ago, I would marvel at Ma. How she kept track of the days, how she and Pa would drag in ice to melt over the wood stove in a metal washtub to bathe their girls all the long winter, how she would enforce quiet and study on Sundays. What a drag it must have been sometimes. What a ceaseless effort, creating civilization for her family, beating back the chaos and dirt and lassitude that must have always threatened to destroy their tenuous stability. To my ears some of it sounded downright crazy. Ma! Did you really grate carrots and squeeze the juice into your cream so that your butter would cast a pleasing yellow glow? Wouldn't you have liked to sit down for just one minute instead?

But she really couldn't have. She had to do those things. Her family depended on her to insist upon the importance of doing more than just survive - to rather create beauty and peace and discipline, way out in the wilderness.

I feel like her now. I make them practice the piano, and speak to me respectfully, and brush their teeth, and clear the table. I chop onions and wipe down the counters and change their sheets and do their bedtime routines. In the context of Mike's illness, frequent moves, and the uncertainty of our future, it does feel at times as if we are in the wilderness. 

I labor to make our family's center hold. Pete, the chaplain at the cancer institute, told me once that none of it is wasted. That made me cry. I listened to an old interview with Marie Howe last week and she talked about being a teenager and taking St. Theresa's advice to heart while she submitted to her father's harsh punishment, picking up cigarette butts in the yard: make every task a prayer. Do everything as if it were a prayer, offered up. Wash this dish, tie this shoe, replace this roll of toilet paper: carefully, intentionally, with love.  

I think it is possible, and even probable, that these daily labors are holy acts and that I can understand them as such. I want to hold that truth close, while also acknowledging that just because it is holy and never-wasted does not mean it isn't Hard As Heck. Holy usually travels with hard, I guess.

Back to Beatrice, on the rug. I didn't cry; I didn't run. I didn't correct her and tell the teachers that she never went to the Berkshires. I let her tell her own story, and I stayed as long as I could. Then I apologized and said we had to go, and she and I went to go pick up Mike, meet up with the kids, and go in to the service. 

This too is a kind of very hard, very holy work that I do that tests me far more than any greasy stovetop (though I despise cleaning a greasy stovetop): the quiet, constant emotional work of being present and steady for my family. 

I used to joke that my feelings get a workout every time I do my job. Being a therapist involves a lot of holding of other people's intense emotions, a lot of feeling-with.

But this? This mothering-in-the-presence-of-cancer is like Olympic training for my feelings. I stay with everyone through the fear, worry, anger, anxiety, grief. My heart breaks with them, for them, alongside them. To be a mother, at least for me, is in part to hold the suffering of my husband and children. (Like a sea turtle holding up the world, or Atlas holding up the sky. Somebody has to do it. It's the unacknowledged, quiet work we all expect women to do.)

And it is also to share myself with them fully: to sing along, to laugh too loud, to make them wait while I talk with friends, to do a little dance, to cook a weird meal, to make things with acorns or write messages to neighbors in chalk on the sidewalk. To embarrass them. Being myself with them is a constant that they can depend on. 

But it sure does wear a person out. Hence the paramount importance of doing what I can to keep filling this fragile teapot. There's time alone, and time with friends, and running, and reading. But there's also the solace and courage I take from the millions of mothers who have walked this path before me, in the face of challenges I can only imagine, in every time and place. Caroline Ingalls, a Syrian mother in a refugee camp, Mary mother of Jesus, my mother, a mother standing on the sidelines down the soccer field from me, looking gorgeous and together and feeling a wreck inside. Marie Howe told a story about the first time she replied to her daughter, who asked why she had to make her bed, because I said so. She suddenly felt the room fill with millions who had gone before her and uttered those same words. They were applauding. Because we said so.

Everything shared, she said, is better.

I think so too.

Wednesday, August 24, 2016

and then i saw a darkness

I've been longing to write a letter to you, here in this languishing neglected blog, a place where I can be nothing more or less than honest. I am compelled to articulate some part of my recent experience frankly; I fear doing so, too. I don't think I've been ready until today.

I also haven't had a spare moment until this morning. It's gorgeous outside. My two big kids are with my mom at an amusement park for one last blow out before school, Beatrice is at the playground with a babysitter, Mike is feeling better and is thus more independent, and I am sitting outside at a favorite local spot with a laptop and a latte. It's too luxurious; it barely computes.

Something happened to me recently. It only lasted a few days, but I'm going to call it what it was: depression. I didn't exactly meet the diagnostic criteria but for the first time in my life, I was really inside depression. I've seen it from the outside countless times as a clinician and friend and family member, but I'd never known it firsthand. 

You guys. It's really, really bad. Like, crushing. Here's how my stress-induced version unfolded: Mike went inpatient for six days to begin his second round of grueling chemotherapy. During that time I endeavored to move our family out of a friend's house, where we'd been for about five weeks, and into my mom's house. [Quick background for those who don't know: Mike's cancer came back. We found out in July - on my birthday, honestly - and after much deliberation decided to stay in Lancaster while he has more chemotherapy to prepare him for an eventual stem cell transplant.]

That time of countless trips back and forth (with the immense help of friends and family) was overfull with managing my kids' disorientation and anxiety, visiting Mike in the hospital whenever I could, cleaning like a madwoman in the bedroom and bathroom in anticipation of a possibly neutropenic Mike's return. In the midst of so many logistics relevant to moving homes again, I began to notice my head was really, really hurting. After we arrived at my mom's, I kept popping Advil and unpacking boxes and despairingly looking around, trying to figure out where exactly five people's things could fit in her relatively full house. Where to put backpacks? Clothes? Books? I wanted to solve every problem at once. I didn't want Mike to come home to chaos. I stayed up too late doing things like reorganizing books in order to find space on the shelves.

Other things started to go wrong. My contacts on my phone mysteriously disappeared.* Mike went through a terrifying, difficult fourth chemo day in the hospital (which we now know is part of the deal with this regimen) and I wasn't with him and thought I'd break with worry. I went through every box and realized I could not find the file with all my CEUs that I needed to renew my social work license in Maryland anywhere.** My head and whole face hurt so much. More Advil. I hadn't gone running in two weeks. I had started looking for a job and remembered that, oh yeah, job hunting while under duress totally sucks. The children were increasingly upset that mama was crying often and in a foul mood; I seemed to be failing to provide them with emotional steadiness at every turn. I feared I would not be able to coordinate Mike's staging procedures that he needed arranged in New York during a narrow window of time. I tried to register Gabriel for soccer and learned the U10 boys registration was already closed. 

What?? No soccer? We can't even have fall soccer?! How could cancer take that, too?***

I felt shaky and woozy and after Mike came home I finally realized I was really, really sick. I had been for a few days, and but for that raging sinus headache, the whole-body-sickness had been thinly covered over with a layer of adrenaline and urgency. Until my body said enough already. Stop it. 

Kind grandparents helped with the kids and I took to my bed when I could. It was hard to stop working on the move. But when I could actually settle, this is what I did in bed: cry. I wept with a despondency and fear that I could not shake. The specter of hopelessness kept emerging before my eyes and threatening to take away every shred of high functioning and cheerful mojo I had left. I stayed sick; the kind of sick in which climbing a flight of stairs is a real challenge. 

What would happen to us? If I can't continue to carry my family at the level of an Olympic gold medalist, I thought, we will be lost. 

It sounds dramatic. It was. 

I knew that something was really wrong, and that depression was settling like a cloud over my vision, because I wanted to hide away from everyone I love. I wanted a cave in which to disappear. I couldn't bear to have any loving eyes on me; it would amplify the reality of the disaster I found myself in. And also make me cry more. [Did you call/email/text me during that time? I am so sorry. I simply could not make myself respond.] 

I couldn't bear to see anyone from the regular world, in which people casually believe in the dependability of their own futures. Facebook, full of summer vacation pictures and anniversary shout outs and beautiful healthy athletic people, was an instrument of torment (that I finally put aside). 

I've never felt that way before, not in thirty-nine years on this planet. And wow, today I am profoundly grateful for the normally sunny temperament that I just happen to have been born with. When times get tough, it is my wont to reach out. The whole desire to isolate thing was so disorienting. I noticed it, could not recognize myself, and felt worse still. 

But after a couple of days of this, I called my friend and former colleague Kirsten and asked if I could see her and possibly get a prescription for some antibiotics. I couldn't stand to be sick and sad anymore.**** I met her on her front porch after our kids were (mostly) in bed and told her that everything was a mess and that I was really, really sick and not getting better. She listened, offered some gentle advice, sent a prescription to CVS. I made it home, exhausted and relieved.

That was the first turning towards a restored sense of self and hope. Someone else took care of me. Exhale. Then I wrote an email to Edith and told her how bad everything was. I cried while writing it but knew in my heart it was a good thing to do. I was sick for a few more days, but not in my heart. I knew it was getting better; the cloud lifted. I no longer felt the need to hide. 

From start to finish, the slide into whole-being illness and the emergence into recovery was probably about five days. But it was real. As with all traumatic, terrifying experiences, I think one has to speak it. Tell the story. That's the only way I know to tame it, to domesticate it into a regular old memory that can't jump out and scare me. [Related: I know this post has been a very long description with scant poetry or wisdom on offer. Are you still reading? Your loyalty and stamina are admirable!]

I have to keep trying to make sense of it all. So far, I've come up with a few things: 

Last week confirmed my intuitive and clinically-informed sense that our bodies and moods/spirits are entwined in complicated and unknowable ways. To take care of one is to take care of the other. 

Also, chronic stress really messes with one's well-being. Duh, right? But we all need reminders. 

My tedious, near obsessive prioritization of creating time to exercise is, it turns out, good and completely necessary.

Reaching out for help is a profoundly healing act.

And finally: I was afraid to let anyone know how deeply I was struggling. I felt ashamed because in that moment I saw myself as ineffective, weak, helpless. Honestly, I feel a little afraid right now, telling you about it. 

But I think it's a good thing to do. My vulnerability is the raw and powerful real thing that I have to give you. I feel brave today. 

What our family is going through is immensely fucking hard. I know I'm not the only woman out there who has run herself ragged taking care of her family in the midst of mountain-sized challenges. Our numbers are legion. So I say this most especially to all of my sisters-in-heroics out there: taking care of ourselves is always, always worth it.






*I got my contacts back, eventually, in the form of an Excel document. And after three trips to the genius bar and many hours on hold with my carrier, I now have a new shiny phone. Happy ending.

**I'm putting the pressure on the PA State Board of Social Work to send me a photocopy of my file, which contains all my CEUs. They exist! I just need to convince someone there to send them to me. Week two of trying...

***I played the cancer card and they opened up a spot for Gabriel. His first practice is this Tuesday.

****I had a good talk with a big-hearted therapist first thing today. Went for a run yesterday. I'm on it!





Thursday, July 7, 2016

in which Beatrice endeared herself to me even more completely, on the day after we learned Mike's cancer is back

It was bedtime. I was standing behind Beatrice at the sink while she stood on a little stool, looking in the mirror and pensively holding her toothbrush aloft.

...I think I want to go to Massachusetts, too. Mama, I want to go with Didi and Gabriel.

(On Saturday my mom is taking the two older children to the house we rented in Massachusetts months ago but can't visit because of Mike's illness.)

Beatrice, I didn't think you would want to be away from us for an entire week. And this way we can have special time together. We can go back to the fountain, and go to the library, and play hopscotch, and go to the market, and watch movies.

...Well, okay. I like those things. Okay, Mama.

We'll have lots of special time, just Beatrice and Mama and Papa.

(A big smile lights up her face in the mirror).

I adore time with just Mama and Papa!

(I grin back at her).

And Papa and I absolutely adore spending time with just Beatrice!

(Beatrice backbends a bit so that she can take an intent, upside-down look into my eyes without the mirror mediating).

Would you say that one more time, please?

Papa and I absolutely adore spending time with just you.

She spun around, almost falling off her stool, and laughed and hugged me, utterly delighted.



Tuesday, June 7, 2016

the first ending

This morning, before the Last Day of School, I was tying up packages of chocolate chip and apple cinnamon oatmeal cookies that we spent a very long time baking the day before, and hollering up the stairs for Gabriel to brush his teeth, and fighting with Frances about practicing the piano, and noting that Beatrice was not dressed, and worrying about Mike's light-headedness, and realizing that I hadn't made Gabriel's lunch yet nor worse still, egads! - my COFFEE - when a nagging, itchy feeling started to bubble up from the murky depths of my brain. We had seven minutes before it was time to leave. What else in the world was I forgetting?

I turned back to Beatrice. Had she brushed her teeth? No. That wasn't it though. She was leaning over a chair with one dirty foot in the air.

And then I knew. I could not for the life of me remember the last time she'd had a bath. It had been many, many, many days. So many it had fallen out of the nighttime routine. My first thought was: does that constitute neglect? Will her teachers notice and call protective services?

My second thought: don't the painstakingly homemade cookies somehow counterbalance my lackadaisical approach to hygiene? The cookies that I involved Beatrice in baking, even after I watched her fall backwards from her chair at the counter, taking a bowl brimming with a double batch of dry ingredients toppling with her, coating every kitchen surface including our shoes in cinnamon-scented white powder?

(Not even that event prompted a bath).

(To her credit, she spent a long time industriously smearing flour into a gluey film all over the cabinetry with damp paper towels, trying to reverse the damage.)

The fact that I forgot that Beatrice sometimes needs a bath weighed on me as we walked to school. It was a reminder that I'm back in the mode I inhabited last fall, during Mike's initial chemotherapy. The conditions are remarkably similar: we're wading into a big transition full of uncertainty, Mike is really sick with a slew of complications, and the kids need extra support. Multitasking is frying my brain. I'm back to making frequent trips to the CVS, where the kindly pharmacist greets me with "Picking up for Brogan?" and ends the transaction by giving me a sympathetic smile and calling, "See you tomorrow!" as I head towards the door.

The difference is that now it's more familiar, and so while less laden with anxiety, it's also somehow less tolerable because this isn't supposed to be happening. When Mike was recovering earlier this spring, we allowed ourselves to make plans, to nurture expectations about the future. Now, three cycles of cancer treatment later - and anticipating a fourth - we are letting go of one expectation after another. Visits with friends, a birthday fishing trip, an anniversary date - all canceled.

Today was the last day of school. I thought that on the last day of school I'd be back to inviting friends over for dinner, to making plans, to living a life generally colored by more giving and less receiving. I thought we'd be squeezing a lot of fun out of our last weeks in Lancaster. Instead I dropped off the kids and talked through Mike's symptoms with the nurse who called to check in, to see if he improved after IV fluids yesterday.

Throughout the scariness and heartache and tumult of this school year, the children had a safe, peaceful place to go every day, organized by reassuring routines and populated by kind teachers and friends. I have never felt so grateful for a school community. The New School is marked by a culture of courteousness and creativity; it's a place where a seven year old patiently holds the door for the three year old behind him (and her mother) and the art show is the biggest event of the year. We've walked the four long blocks there in all kinds of weather, meeting friends along the way, sighting bunnies and mushrooms and irresistible big sticks, arguing and joking and gossiping.

So can you blame me for crying when Beatrice's teacher Sybil enveloped me in a goodbye hug at pick up time? All the losses of the moment got jumbled up, and in the safety of her arms - and in the sight of her glorious purple hair - I cried.

My kids have been mothered by so many excellent teachers and older children and fellow parents; now as the summer diaspora begins I fear the mothering gig falls back entirely to me. I'm afraid of the responsibility; I'm afraid of the sadness I'm sure they will feel at losing a daily connection with such vibrant networks of care.

This afternoon Gabriel's grandfather came and picked him up for a special solo visit. Frances and I played in the front yard. I made dinner. Mike felt well enough to help clean up. I read nursery rhymes to Bea. Frances and I sat and read her writing from the year that she brought home to share.

Before I sang her bedtime songs, I gave Beatrice a bath. And when she asked, I got in with her. She loves that.