body language

In the days after Mike's diagnosis, I was spending most of my time either on the phone or accompanying him to various medical appointments. I was arranging child care, trying to communicate with our insurance, coordinating care between four different medical institutions, looking for a house to live in, looking for a school for the children to attend.

(Wait. Did that really happen? Did I actually live through those days? I am incredulous.)

Every time I paused to push a warm, narrow back on a swing or rest my head against a cool countertop, why I was scrambling like this overwhelmed my mind. Those were the times I would notice that every part of my body hurt. I hurt in a way I never had before, from the inside out and the outside in. It was something I registered, attempted a deep breath, and then placed at #37 of my priority list.

I remember unexpectedly walking into Mike inside the sun-filled dining room of our friend's home, where we were staying. I fell into his hug. (Where, always, I am home.) All was exposed and raw then. I started crying and heard myself blurt out, I hurt so much. He was the one with cancer, he was the one going through horrifying staging procedures. The ache I felt was terrible, disorienting.

Later, when friends said that I was looking skinny, I chalked it up to chemo couvade. In those first weeks I too felt nauseous, sometimes put off by food - previously unheard of for this lover of cooking and eating.

This has happened with my kids too, especially as tiny babies, when the boundaries blur and fade. We were hungry, we were tired, we needed each other's touch. Whether I wanted to or not, I felt what they felt.

I would have liked to turn off the empathy switch during radiation treatments. The inside of my mouth felt burnt, raw. Nothing like Mike's suffering, and as I watched his ability to eat and drink decline, I wasn't about to complain. One night I went out with my mom for fancy cocktails and ordered a drink that sounded like something I would normally love, laced with lime and ginger. But then sitting there at the bar, I took a sip, and alongside the ambivalence about being out, the acidity burned against my raw skin. Ouch. (It is, by the way, tragic to order the wrong thing when you are out for the first time in months.)

Despite the inconvenience, sympathy pains offer me a kind of comfort. When I am afraid, when I doubt all, my body tells me something true. My being is responding, mirroring, holding my beloved so deeply. Even when on the surface I think things like: I am so mad at him. I am so sick of this cancer. I am so fed up with taking care of everything and everyone. - even then, my feelings and thoughts cannot disrupt the holy bond we share. I can't trick myself. My body reminds me of our love, in its own language.

I have a newfound ability to cough up and spit out phlegm, with all the glorious noise and drama that I used to admire in my dad and sister. They both were amazing. (Rachel still is). I've been watching Mike spit out secretions for months now. That's what I needed, I guess. Now I hock up goo and spit it into the snow like nobody's business, like my libertarian Texan who-gives-a-shit great-grandpa Diddy (much to my children's horror, and fascination).

Did you just spit?

Mike's ongoing struggles make us worry about lymphoma. Did the treatment work? Is it really gone? We have to wait. In the meantime, yesterday I noticed that I have a swollen lymph node just under my chin, which is the very one they removed from Mike during the biopsy back in July.

My lymphatic system is calling to my husband's lymphatic system.

That is so romantic.

It's not quite accurate though, to describe my body as a discreet entity. I am struggling to articulate that noticing the precision with which my body empathizes with Mike - experiencing those layers of my imagination and emotions that just escape conscious comprehension in my limbs, in my muscles, in my mouth - it is shining a light, albeit feeble, on the wholeness of my being. The battery is almost dead in this flashlight, but its faint glow suggests something beautiful and hard to understand, let alone speak about: my body, mind, and spirit are entwined. Like yours.

To love someone is an integrated, being-wide gesture that you make over and over again.

It's Sunday so I have to mention that today we heard Corinthians in church. It sounded new to my ears: [Love] bears all things, believes all things, hopes all things, endures all things.

Love never ends.

saturday

This morning I went to pick up Frances from a slumber party. 

She wants everyone to call her Frankie now. When she corrects me, I explain to her that a habit of ten and a half years is not easily broken. Also that we picked her name, and it is absolutely perfect for her. Despite this, she has convinced most of the people in her life to switch it up.

I found a modest-sized gap along the curb and began parallel parking our minivan. My entry was atrocious and I had to inch back and forth. Once parked, I climbed into the back to unbuckle Beatrice and then ducked out with her on the street side, as we were parked so close to a hedge on the driver/sidewalk side that we would have had to climb under it to escape. 

Maybe I should embrace my limited parallel parking skill as something unique and wonderful about me. Right? My trouble with spatial relationships is a gift. It allows me to empathize with a certain kind of artist, poet, space cadet. Or I might at least accept it, and try not to get too embarrassed when I see another parent nearby on the sidewalk, also on his way to pick up, watching me wrench the wheel all the way this way, and then all the way that way, an expression comprising equal parts wince and smile frozen on his face. 

His look mirrored my own it's-just-too-much feeling when, after all that, I climbed out the opposite back door. I said hi. I mentioned that I feel like a disaster. Ha ha. I started walking down the slumber party street, carrying Beatrice who refused to walk, and then realized I had no idea which door to knock on. 

I had to call back to him. What's the house number??

(I have to ask for help even when I feel like I shouldn't have to ask for help. I have to ask for help all the time. I am meeting people this year, and becoming part of their lives, and this is the only me they know.)

I walked into a marvelously chaotic scene, a jumble of shoes that seemed far too big for Frances and her friends, bags and stuffed animals and pillows piled by the door, lots of gangly funny girls joking about how they are simply unable to go home. The birthday girl's mother asked me, innocently, what we were doing this weekend.

My mind went blank. What is the proper response to that question again? I thought. I thought about Mike, so sick at home. I thought about how I didn't know if we should call the on-call oncologist about his symptoms. After a too-long pause, I replied, in upspeak, as if I were a nervous twenty year old on my first interview: I think we're going ... to the library?

Readers, I refer you to my last post for more on how treacherous the waters of casual social interaction have become. 

Holy moly. Then another parent, a friend, walked in. We chatted for a little while just inside the door while the girls reported on how late they'd stayed up. He asked about Mike. I said he was really sick. I explained a little. Radiation recall. My friend looked at me with genuine care in his eyes and said, please give him a hug from me.

And then, shamelessly, I began tearing up (as I am wont to do), lurched over a sleeping bag, and went right in for my own hug. He wasn't really offering me one, but he rolled with it. 

See? I have to ask for help all the time. I ask for help without even asking. In the beginning I thought maybe this humbling practice, having to be aware of my own vulnerability and dependence on others, would be spiritually transformative. Or something. Now I'm not sure. 

Everything feels hard in part because I expected our burdens to lighten this month, but so far they only seem heavier. We were ready to turn a corner, but despite the inclination of our hearts, Mike's body seems to be drawn backwards, towards the radiation nightmare that we thought was behind us. 

It's interesting that despite their capacity to drive me bonkers, and despite my occasionally feeling overwhelmed by the responsibility of caring for them every dang day, right now the children offer me a kind of paradoxical respite. Safety, normalcy. Sleepovers, whining, piano practice, stories. I can't make Mike's throat heal, but I do make a mean peanut butter sandwich. Kissing a bumped head is a simple gesture that I can approach with satisfaction and pleasure and confidence.

So I leave you with this series of photos from bedtime tonight. Beatrice sang me a storytelling song about Baltimore, and falling down, and gold digging (a little Kanye in the car this morning), and some other stuff in a language only she understands. It was so dramatic, so big and bright and hilarious, I had to let her go on and on, straight into wired overexhaustion. It was just so fun.  

p.s. Her camera antics reminded me of a similar series from a little over a year ago. Broadway bound, I tell you!

all of your beeswax

There's our big sunny dining room window, the panes of glass framed by miniature smiling faces, friends and family who took the trouble to print up holiday cards and send them to us. I love these cards; I love that I can hold them in my hands and tack them to a wall. Their material existence lends them the weight of reality, something a texted photo skates around but never quite touches.

But sometimes in the morning I sit before all those pictures with my coffee, while everyone in my family is talking to/at me at once, and I feel so lonely. The pictures are of beautiful people in beautiful places; of children and families doing things like hiking or swimming, generally exuding health and happiness and taking those things for granted - because they should. Why shouldn't they? But oh, those photographs are from a place I haven't been in a long time.

It's the way I feel at a party. Like a mother returning to a job, having spent the last year consumed by the work of caring for a baby day and night, uncertain as to whether she knows how to make conversation with adults any longer or possesses whatever skills she once utilized in the workplace. Like an immigrant trying to operate in a new culture, looking for a way into a foreign social flow, feeling disorientation at the periphery all the time.

I've left Mike sick at home multiple times over the past few days to strike out with the kids to holiday events, held in homes filled with a delightful mix of old friends and people I haven't yet met, tables strewn with gorgeous food, everyone looking downright excellent in their new Christmas finery, spaces filled with the good cheer of the season.

And I walk in, and I feel like an alien.

I love a party. But now I can't remember what I'm supposed to say. The gears are stuck. I'm afraid of crying when someone inevitably asks me something innocent and light. Like how are you. I cringe when I am introduced to someone new, a poor unsuspecting soul holding a drink and standing ten inches away from my face, listening with polite inquisitive eyes while I fumble (still, so many months later, still I fumble) around for a low-impact, non-burdensome way to explain that the reason we are living in Lancaster is that my husband has cancer. And we couldn't stay in our house in Annapolis. And we really, really needed a lot of help, and this is where we found it.

Now tell me about you.

I cringe for my awkwardness, for the other person who has to figure out how to respond to this sad tale, for the friends standing a few feet away who know it all too well and have to hear it again. I feel tedious. I am the person you might want to avoid while partaking in holiday good times because I am, no doubt about it, a serious downer.

When I walk into a room filled with normal healthy people doing normal healthy people type things, and my heart is already disquieted without my beloved, I simply don't know what to do with myself. Traveling from our home sick planet to an oblivious healthy planet, where people talk about books and movies and the news and work and kids? The culture shock hits pretty hard. Every time, I try to harden up inside (to avoid aforementioned crying) but then eventually I talk to someone who I love and loves me too and end up crying anyway. I'm like one of the beeswax candles the kids made just before Christmas: a little lumpy, seemingly solid, but when the heat from a pair of caring eyes gets within a few feet of me I begin to melt, dripping tears rather than wax.

Friends, don't worry. I don't cry all the time. It's just this whole party season thing has really thrown me off my game. That, and almost six months of a bullshit cancer treatment nightmare. I told Mike about how I felt so awful and outsider-y at today's social event and he said, that's how I feel at every meal. Excluded from the world of enjoying food.

What a long, beastly road.

Thank you for walking it with me.