Saturday, February 1, 2014

The good people… (Thanks, Pete Seeger.)

"Pete Seeger once said, 'I'm not sure my participation in a benefit cause, march, or demonstration has been effective, but I can tell you one thing, being involved in these kinds of issues means that you're involved with the good people with the live hearts, live eyes, and live heads.'" -Harry Chapin 

Pete Seeger died on Monday.  When I read it on my Facebook feed the next morning in bed, my sunken “Oh…” caused Dan to roll over and ask what happened.  My sadness was for him, my sweet Pete Seeger-loving husband.

I searched for the gentlest way to say it. 

“What?” he asked again, some urgency to his voice now.

A similar thing happened six months ago.  I gasped and Dan had said, “Pete Seeger?”

I’d shaken my head---“No, bud.  It’s Toshi.”

This time it was Pete Seeger.  And Dan and I lay in bed a little longer hugging because of it.

I didn’t really know my husband until he brought me to Pete Seeger’s 90th birthday concert at Madison Square Garden in 2009.  We’d been together eight years by then.

My husband is a shy man.   He’s not just introverted, although he’s that as well.  I heard a writer say once that she sits inside all day writing alone, occasionally looking out at her husband who works their farm all day alone, and understands that they need the same things in life.  In this way, they are together.   In this way, Dan and I are together.

But when we do venture out to be around others, he is shyer than I am.  It’s a trait that has caused me some frustration over the years.  More than once I’ve had to wait for him to drink enough wine in order to dance with me at a wedding.  When a waiter comes to our table, h/she often directs all questions my way due to Dan’s deference to me (which often takes the form of a lack of eye contact).  He is not rude or remotely unkind, my husband.  He is shy.  Though there have been times when his shyness has felt to me like withdrawal from the world, cynicism even, and it troubled me. (I’ll also mention here that he is the funniest person I know…and almost everyone I know is funny.)

I remember warning my sisters and friends that they wouldn’t really have a sense of Dan until the third or fourth time they were around him. 

Apparently, it took me eight years.

I knew long before that concert that Dan was not just a fan of Pete Seeger’s music, but that he had also been moved powerfully by what Pete Seeger had done with it.  What Pete Seeger had used his banjo to do.  But I can’t pretend I got it, especially at first.  Dan would play “Beans in My Ears” and “Rye Whiskey” on long car rides and I’d beg him to “Please turn off the friggin’ Raffi!”

He’d say, “Do you hear how he’s saying Alby Jay?” and explain how Seeger was singing about Lyndon Johnson (LBJ) not listening to anti-war protestors and I was like, “That’s awesome, now can we please listen to my music?” and then I’d put on Ani DiFranco. 

I was 20 (when we started dating) and didn’t know that because of Pete Seeger there was Ani DiFranco. I’ve never considered myself sophisticated or even knowledgeable about music.  To a desert island I’d bring a Jackson Five best-of and the soundtrack to A Chorus Line.  Despite my poor taste, I can listen to and enjoy almost anything.

But when Dan first introduced me to Pete Seeger, I didn’t get it. I didn’t get the sound.  This wasn’t the case with all folk music.  Ani’s ferocious striking of her guitar strings had been helping me work through anger since I was a teenager.  The sound of Joni Mitchell's voice had helped me figure out what was below that anger.

“Good Night, Irene”?  Nothing.  

But Pete Seeger meant something to Dan.  When we talked about our funerals, he told me he wanted “Well May The World Go” played at his.  So I tried to understand.

He told me how Pete cleaned up the Hudson River.  How he’d been blacklisted and the FBI kept a file on him.  How he still stood on street corners in upstate New York where he lived holding anti-war signs.  I still preferred listening to The Sound of Music soundtrack (movie version of course), but I loved how much Dan loved Pete Seeger.

I loved how much he loved teaching me about the music.  He told me about Lead Belly and The Weavers and Woody Guthrie.  I asked which songs Pete wrote, which ones he sang, trying to get the facts straight.  And Dan told me about  “Turn, Turn, Turn” (“From the Forrest Gump soundtrack?” I asked) but then explained that it wasn’t just about who wrote what song.  That folk singers, Pete Seeger especially, just wanted the music to be played or sung, ideally in the company of plenty of others who would leave their mark or verse on a piece of music. 

By then I understood that Pete Seeger was what real heroes are made of and I loved Dan for having such a worthy one.  For Christmas I surprised him with a banjo and Pete Seeger’s instructional book on how to play.  In the car, Dan would take my hand to his heart after I’d surprise him by chiming in with an “English is Kuh-ray-zee” or sing about how “my get up and go has got up and went.”

I had warmed to it, but I still didn’t understand how Pete Seeger’s music--how the happy sound of a banjo--had been such a powerful tool. 

That is, until Pete Seeger’s 90th birthday concert.  This is when I got it.  When I saw my husband--my shy Dan, whose hands I’ve had to hold around my waist in order to keep him from escaping a hug he’d felt I’d held too long in public--not just clapping, not just dancing, but singing along loudly to the songs performed by Pete Seeger and the 51 other musicians who played that night. Dan’s eyes were like a child’s when Pete Seeger came out.  I was in my seat watching the stage when I turned and saw that my Dan was already up on his feet singing.  I looked around, wanting to say to someone, “Are you seeing this?  He doesn’t do this.” 

But of course everyone was doing it. These were Pete’s instructions.  That we stand up, that we sing along, harmonize.  That we participate.  

Dan barely sat during the whole four and a half hour concert.  He pointed everyone out to me, my education continuing. “That’s Arlo.   That’s Joan Baez.  That’s Richie Havens---he opened Woodstock.”  My angry (well, “Not Angry Anymore”) Ani DiFranco sang “There’s a Hole in the Bucket” with Kris Kristofferson. And I saw that the night wasn’t about any one musician’s performance--not even Pete Seeger’s.   It—he--was about the music and the message.  While perhaps not a sloop, something incredible was built by all the voices that came together during that concert.  And I finally understood Pete Seeger’s power.

Prior to this, I had struggled to reconcile Pete Seeger’s kind voice and demeanor, the merry sound of his banjo, with the sort of subversive reputation Dan told me he had earned.  But that night I understood that it wasn’t just the lyrics and subjects of the songs he sang that had gained him that reputation.  His music brought people together and said it was okay—essential--to hope and reach for change and justice. Pete Seeger was dangerous because he believed in people.  Strap a banjo around his neck, and this belief spread.  I saw it happen all around me that night. 

And I saw that my Dan’s shyness was protecting--or maybe just disguising--his own dangerous, hopeful heart.  The man singing beside me was no cynic.  I learned that for certain that night.  He believes in a kind of hope that many are too scared to let themselves feel.  He believes in people.  He’s shy and he’s as brave as they get.

When I told Dan about Pete dying, he was stunned, numb.  I think he thought at first that I was going to tell him that something had happened to Katie and so the loss of his hero, which is of course different than the worsening illness of a family member who lives downstairs, seemed a momentary relief of sorts.  And then as Pete Seeger music played through the house for the rest of the day, the sad reality hit my Dan.  He didn’t take the day to be alone though.  Instead he made an apple crisp for our family, a turkey sandwich for my niece’s lunchbox. 

Throughout much of our relationship, Dan had talked about wanting to write Pete Seeger a letter--a thank you--but he hadn’t let himself do it and was worried he would miss his chance.  For his birthday a couple of years ago I went to a print shop and had a pad of stationary made up.  Around the border ran the words “This Machine Surrounds Hate and Forces it Surrender”--the same words that circled Pete Seeger’s banjo. I set the paper at his desk with a pen and a stamped envelope addressed to a P.O. Box for Pete Seeger I had found online.  Dan sent Pete Seeger his thank you.

This is mine.

I have heroes.  Dan is one.   I believe he could change the world.  That he does it every day.

Thank you, Pete Seeger, for showing me that. 

Monday, January 27, 2014

We finally took our Christmas tree down.

Dan was here.

When I first started this entry, it began with the admission that the tree was still up, that it might stay up through March or even later because I was passed the point of feeling bad or even embarrassed about it.

I am working hard to figure out what truly deserves priority in life right now, and as a pretty plastic tree loitering in the living room hardly seems threatening, packing it away slid down the list.
The only reason the job crept back up---and eventually got done---is because I wanted to make room for some of the toys Sav and Eva received for Christmas.
The girls are up there on the priority list.
So too is not breaking an ankle on the wood handle of a motherfucking toy duck lying in the middle of the room.
So we finally undecorated. 
With the tree down and their sheets clean, the house was ready for Katie, Gary and the kiddos, who just spent 10 days up at Bec’s house in NH, to return.
Return home.  At first I wrote that the house was ready for them to return home.
It’s how I feel but I was shy to write it…to impose it on them.
Home is a concept that every one of us living in this house is uncertain of right now.  Sometimes I say to Dan, “I want to go home,” and he knows I’m talking about the Exeter, NH apartment where we lived for the last seven years---the first seven years of our marriage, the final seven of my 12 years in NH.  He knows when I say it that I am longing for the protection and safety of the smallness of our life there.   It was sanctuary and cave.  Home is where you hide?
But of course I am home now in RI.  I don’t mean that this where we live.  Although true, I don’t entirely feel that we actually live here yet.  But I am back in the town where I grew up.  In the very house.  I am home in that way.  In that “you can never go home again” way. 
Though, especially with Katie here, it does sometimes feel like we both somehow did go home again.  Like when we let each other know when one of us is going to shower so that neither of us suffers the cold water that results when both the upstairs and downstairs showers are in use. We’re more polite about it now, but as kids we employed a similar system known as,  “I call first shower!”  (As the youngest of my sisters, it would have only ever been with Katie, arguably the most benevolent of my four overlords, that I would have ever even tried calling first shower with any expectation of it being honored.) 
If home is where you heart is, I’m there.  Though there have been times when Dan’s three days a week working in NH (the other days he works from here…from home) had me feeling like my home is doing so much driving---and both of us are so tired---that we can’t settle in to each other the way we used to.  Fortunately, we’ve found our way home to each other more lately.
And of course, if home is where your mom is, I’m as there as I’ll ever again get to be.  This feels especially so when I’m sitting at her spot at the kitchen table or outside among her flowers where she planted her seeds and hands and self into the earth. This is a far more positive outlook than what “home is where your mom is” used to evoke in me, which was a heavy acceptance that I’d never again be home.  
I’ll also add that having released my dad’s ashes into the river here, a sense of him--- steady as the current that I imagine lapping him gently back to our shore each day---contributes to an earthly, almost tribal sense of home at this spot on the northwestern bank of the Sakonnet River.  Though, as far as I know, there is no proverb that says, Home Is Where Your Release Your Dad’s Biodegradable Ash Package.  (But if my dad were here, he’d put that on a sign for me to hang in the kitchen.)
When we all got back to the house after spending almost a week in Boston during Katie’s surgery and recovery, Gary said it felt good to be home and then asked if I minded him saying that.  I didn’t.  I’m glad that’s how it feels.  It, being the house, I thought then. 
But then Katie called me from NH when Sav, who was having a great time up there, announced out of the blue that she was feeling homesick.  Katie said she asked Sav what she was feeling, wondering if she’d mention Ohio or her bedroom here in RI.  Wondering what “homesick” means to a four-year-old who has lived quite a few places in her short life with all the travel they’ve had to do during my parents’ illnesses and now her mom’s.
“I miss Lola and Dan,” she told Katie.
We were homesick for them too.
(Though, let’s be real, the break was nice. I’m sure Katie and Gary would say the same.)
 I woke up the morning they were to return so excited to see them.  I wanted Sav to come up to my room and sit on my bed and pepper me with questions until she stumped me.  Why can’t little girls be mommies yet?  Why are you an auntie and not a mommy?  Why does mommy have cancer in her belly? 
I wanted to see Eva shaking her little diapered butt to the Super Why theme song in the morning and (dare I say good morning to her) to then point her finger at me and say “NO!”  (I look forward to Eva being old enough for a morning cup of coffee.) 
I missed them.  I loved the break and needed it to recover, but I missed them.
As we put the Christmas decorations away, Dan pushed the little red button on the foot and a half tall singing Bing Crosby doll that we bought years ago and said,“It’s his last song of the season.”
I remembered how when we brought it out at the beginning of December, Sav and Eva kept pushing the button until they’d hear the horns start for Bing’s “Santa Claus Is Coming to Town” and then dance around him until the song stopped and it was time to push the button again.  Then they wanted us to play more Christmas music and Sav said to Dan, “Will you dance with me like we’re married?”  As Katie and Gary caught a rare moment alone in another room, we played one of Eva’s favorites songs, a song Katie sings to her at bedtime.  And with her little head on my shoulder and Sav’s on Dan’s, the four of us slow danced in the living room by light of the tree to Silent Night.
I had almost forgotten that night.  I had almost forgotten that the holidays had even happened.  The weeks leading up to Katie’s surgery on January 3 were a terrifying blur of trips to the ER, Katie losing her ability to walk, fighting for appointments, and the growing possibility that she might not make it to surgery.  Then once it was a go, it was a blur of last-minute scans, blood tests and arranging.  Then it was surgery and lack of pain control during recovery.  Eventually she was walking again and then finally discharged.
As is my style, I waited until the worst of it was over---Katie was through surgery--- and promptly got so sick that I bruised, possibly fractured, my ribs from over two weeks of hard, unrelenting coughing.  The cough and rib pain (the latter of which is still with me) coupled with the mess of a post-holidays house had me wondering why we’d even bothered to decorate this year.  (It’s true that I hate holiday clean-up and have this thought every year, but this year it was especially bad.)  And then Dan pushed Bing’s button and I remembered not just that night of dancing with the girls, but all the other sweet moments and gifts that came with having these guys here over the holidays.  Dan had as much fun hiding that Elf on the Shelf as Savvy did finding it.  (That little guy hung from ceilings, stared down at Sav from atop the toilet paper roll and at one point found himself trapped inside a lidded glass jar, though only the adults knew that the little sign taped to his hands said, “HELP!”)  And there were so many “Why is Eva quiet?” panics that ended with us finding her playing with the straw dolls and little ceramic carolers I’d set up in a wintry scene beneath the tree.  While I did discover quite a few headless townspeople---“Something happened in that village,” Dan said, his voice faking a quiver---finding Eva playing there was particularly gratifying.
When I’d first put up the tree, Katie had told me that one of her clearest and favorite holiday memories from childhood was playing with the scene my mom put up each year beneath the tree.  She told me how she remembered playing with those straw dolls---some of the same ones I’d just positioned to be sledding or crossing the bridge over the frozen pond---and having an awareness of her own happiness, a sense of the warmth of the house and our family inside it…a sense of home.
That's when I told Gary, after he’d expressed some concern, not to worry about Eva breaking anything.
"It's meant to be played with," I said.
I always wonder how Sav and Eva will remember this time.  What images and emotions will be etched on their brains to be pieced together later.  I am hopeful that if not the dancing or playing by the light of the tree, that there might be some memory of a sense of home.  A home---if not the house, then to Dan’s and my heart---where they will  know they can always return.
And should they forget, perhaps I’ll show them the decapitated villagers to trigger their happy memories…

Or make a sign for their kitchen: Home is where they’re headless.

Monday, September 30, 2013

Not much here. What's new with you?

The other night my sister Katie’s little girls watched the moon rise over the river.

“Mooooon!” said Eva, who’s two, to four-year-old Savannah.

The two of them stood against the deck railing, their backs and heads of blond curls to the house and all of us, watching the moon together.

“Isn’t it such a beautiful night?” Sav asked Eva.

“Mooooon!” she said again.


Before this, Katie had told me to come and look at the moon too.

Lately, we’ve also been catching sunrises.

“Red sky,” Eva will say when she sits with us in those earliest hours before the sun is up.

Then, once it pops and and the gold light streaming in is so fierce it makes us squint, we close the curtains so Katie can get some sleep on the couch.  She likes sleeping on the couch, just like my mom did.   She finds more comfort on her side.  Same as my mom.  Same couch even, in my parents’ family room.  The house didn’t sell and Dan and I are living here now, along with Katie, her husband Gary and her girls.

Katie has cancer.

I should have said that first.  

But I didn’t want to say it, the same way I didn’t want to know it.  Until the biopsy results told us that it was indeed ovarian cancer, I still half-expected to hear it was a rare parasite that had bedazzled her liver and pelvic cavity.  

The cancer is what I’m here to tell you though.  That Katie, middle of our five, only blond, the kid who hung with the lizards on family vacations, beautiful absent-minded genius, has cancer.  This is the blog entry where I tell you of this absurdity.  How after my mom was diagnosed with lung cancer and died nine months later, and then my dad was diagnosed with a brain tumor and died a year after that, now my sister has been diagnosed with ovarian cancer, stage IIIC.  She missed stage IV because it’s on her liver, not in it.

I miss the good ol’ days when just my parents were dead.  

When my dad was brain damaged after his surgery, that joke was “the good ol’ days when just mom was dead.”

In July, Katie and her family came from Ohio to visit and do some house-hunting between NH and RI.  In August, Katie went to the ER because she felt a pain in her liver that was getting worse.  Since then it’s been a blur of scans and blood tests and biopsies.  It’s been watching my sister get sick, her abdomen swell so much and so suddenly, that the pants that buttoned around her small waist one night, couldn’t even be zipped by morning.  It’s been watching her get so tired that her eyes roll shut in a room full of chaos, opening only briefly when Eva, disapproving of mommy’s naps, screams in her face.  It’s been seeing her in so much pain that she could only pace the room because sitting offered no comfort.  

But there are also those sunrises.  The talks we haven’t had time for in years.  Magic afternoons where I watched Katie decorate for Halloween with her girls.  (We took a minute that day to hug and cry in my mom’s kitchen, both of us knowing that she was decorating early because she might be too weak by Halloween).  Plenty of laughs. In the beginning we talked to Katie’s tumors as if they were her pregnant belly.  “How are those wittle masses today?”  I’m thinking of playing Mozart for them so that they’re musically inclined when they finally come out.

They are coming out, just not as soon as we’d hoped.  We don’t do simple, removable “lumps” in this family apparently; it’s on her ovaries, uterus, diaphragm, omentum, on the liver but not in it.  Because it’s a fast-growing cancer that’s already spread, the surgeon said he didn’t want to put her through a massive surgery---hysterectomy, any cancered-up organs out---without having the best chance of getting a ton of it out.  So the plan is three to four months of chemo (Katie hits the bar every Wednesday) to shrink the cancer followed by the surgery.

“In time for Christmas,” Katie said.  

Maybe they’ll play Jingle Bell Rock in the OR.

They call the surgery “debulking.”  At the end, Katie’s insides won’t be quite so debulky. They say this particular cancer grows like moss over the outside of the organs, so they’ll remove what they have to and scrape it off where they can.  If all goes well with chemo and surgery---which it mother-fucking will---Katie will then have nine more weeks of chemo.  Though then it will be injected directly into her abdomen, like they’re spraying weed killer.

There’s nothing to do but make cancer jokes at this point.  We call it “the cansa.”  My sister Cherie cracks us all up with a bit she does where she pretends she’s an old complaining biddy at the grocery store.

 “Yeah, Katie’s got the cansa now.  First my mom, gawd rest her soul.  Then my dad with the brain.  Now Katie with the cansa too.  We can’t get a break.  Now can I get that cheese sliced extra thin, sweetie?”

We all cry laughing whenever she does it.  The bit was born when my mom was sick (little did Cherie know how much material she’d have to work with) and my mom would laugh and laugh until she coughed.  

We all feel bad when we have to tell you guys about Katie. It feels like we’re playing a joke on you or something.  You (lovely you) ask us how we’re doing---in a particularly gentle way that means “without your dead parents”---and then we have to explain about Katie.  (Wouldn’t it be weirder if we didn’t?  I tried that and it seemed worse to not say.)    Sometimes when I say the words, “Yeah, um, my sister was actually just diagnosed with cancer,” I have to fight back a giggle because I can’t believe I’m saying those words and I’m so uncomfortable with making you uncomfortable.  I recognize giggling is the most inappropriate response ever.  Please forgive me. I don’t think it’s funny that my sister has ovarian cancer.  I just feel like I’m an actor and someone is filming us for candid camera.  It just surely can’t be real, this scenario where I’m telling someone, who I probably haven’t seen since my dad’s funeral (and before that, my mom’s) that now my sister has cancer too.

She’s 37 by the way.

Ovarian cancer usually occurs in menopausal or post-menopausal women.  It’s why when the surgeon first saw Katie (who was less symptomatic at the start) and had only seen an ultrasound (not the MRI, CT or biopsy that followed), he said, “I don’t think it’s cancer.  You’re gonna to be fine. You need me to say it again?  You’re gonna be fine.”

It’s a line we revisit for laughs.  I’ll take Savannah’s alligator hand puppet and chomp its jaws in Katie’s face, “You need me to say it again?  You’re gonna be fine.”

Which of course she is.  Because that’s the way this story ends.  As Katie says, there’s no other choice.  No other way for this to go.  

“My girls need me,” she says.

So there it is. Her mind is made up.

And while the extent of Katie’s pain and fatigue and swelling was terrifying just in how fast it came on, there have been improvements since last week.  Much of the swelling has gone down.  Her pants fit again.  They’ve been able to manage her pain with meds.  The steroid they give her with chemo helps her keep an appetite and gives her a couple of days of reprieve from the fatigue that the cancer, chemo and pain meds bring on.  She looks and feels better than she did a couple of weeks ago.  We’ve decided that it means the chemo is working.  

She also had a blood transfusion which seems to have helped the fatigue some and should also alleviate the shortness of breath.  Katie goes to a lab for blood work every Monday to make sure she’s healthy enough for chemo.  Last week the oncologist’s office called less than an hour after the draw because her hemoglobin levels were dangerously low and they wanted her to get the transfusion as soon as possible.  Hemoglobin is a molecule in your blood cells that contains iron and carries oxygen.  They think her anemia is something that was going on before the cancer or the chemo, though both make it worse.  So last Tuesday they hooked her up to a packet of blood and I picked up margherita pizza with garlic from Fellini’s and we ate good, Providence pizza while a line of red blood ran down the hose and into her vein.  Her hemoglobin is still low though, so this week they’ll give her iron through an IV.  

It’s going to be a big week.  The iron infusion is Thursday.  On Wednesday, I’ll be bringing Katie to the hospital at 5:30am so she can have a port implanted.  The port will sit under her skin near her collarbone and connect via a catheter to a vein in her chest.  They’ll deliver her chemo this way, which will mean less needle sticks for the six to nine weeks she has left of neoadjuvant (pre-surgery) chemo.  After the port procedure Wednesday morning, she’ll head over for her regularly scheduled chemo.

Today she’ll do her blood work and we’ll meet with the oncologist.  They won’t do any CAT Scans until she’s further into treatment so we can’t know for sure if the chemo is working (it is) or the tumors are shrinking (they are) until then.  There is a blood test they can do that might give some insight into whether or not the cancer is getting beaten back, but it’s hard to know if it would be an accurate marker this early into treatment.  More important though, Katie doesn’t want to hear the results of this blood test if it’s anything less than great news.  She doesn’t want to hear anything that could discourage her or take her from her current mindset that the chemo is working and she is kicking her cancer’s ass.

She told me I can find out but have to keep a poker face about it.  I’m not sure I can do it.  And I’m not sure I want to know either.  It’s one test and it’s only been three weeks of chemo.  As much as we all crave certainties and facts and proof during times like this, they are illusions.  Illness and life and death are about more than science.  If Katie feels like the chemo is working---and she does---then it is.  If she feels better than she did---and she does---then she is less sick than she was.  No matter what a blood test says.  

Also, every day is different.  We never know what she will be feeling. A blood test for a tumor marker can’t tell us that either.

There is so much more to say.  So much more that’s happened.  But I have to get ready for today’s appointment and want, more than anything, to thank everyone for all the kindness and support you’ve given Katie and all of us this last month (and years).  And  I know Katie wants to be thanking all of you right now as well.  

So, thank you for the loving thoughts and emails and texts and prayers you’ve sent.  Thank you for the healing crystals and protective necklaces.  Thank you for the sunflowers and orchids and dahlias from your gardens. Thank you for the soups and lasagnas and meatballs and calzones and fruit baskets and Edible Arrangements and brownies and sundaes and wine (THANK YOU FOR THE WINE!) you’ve all delivered or sent with my sisters or left out on the porch.  Thank you for all the help and all the offers to help with the kiddos.  Thank you for bringing them fall clothes and coloring books and crayons and an awesome kitchen stocked with plastic foods for them to play with. Thank you for pulling weeds and cutting down tree branches so the house doesn’t look creepy and haunted.  Thank you for picking up the trash bins and putting them back on the wall. Thank you for sending Katie sweet cards and pajamas and meditation CDs and books and candles and lotions.  Thank you to all my friends who I haven’t called or written back but love so much for checking in.  Thank you for all the love we feel from all of you.  We feel it so much.  And we’re so grateful.  I could just thank and thank and thank you.

And thank you for the sensitivity and understanding so many of you have shown with regard to Katie’s need for rest and why it’s a hard time for us to have visitors.  I know Katie feels bad when she knows that someone she loves is wanting to check in on her,  but needs a nap or wants to use the energy she has to play with her girls.  Thank you for your thoughtfulness and your understanding.  And I’m sorry to anyone who’s dropped by who I’ve not been able to spend time with because of the million tasks that need doing.  We’re just still finding our way in all of this.  Please know we’re so grateful for all the support and love.

I will try to get back here as often as I can because I know everyone is wondering how Katie is doing.  I promise I’ll do my best.  

Katie’s definitely doing her best.  She was always something special, but the cansa has really upped her game.  She’s all badass.  All grace.  

You need me to say it again?  She’s gonna be fine.

Friday, May 17, 2013

Tuesday's Gone

I’m supposed to go and pick up our new car today---the first new car I’ve ever had. And I’m in deep, deep despair.

We’re trading in my Subaru...and I don’t want to leave it.

It doesn’t help that I’m a little hung over right now. It doesn’t help that the song “Tuesday’s Gone” is playing.

But the idea of parking it the dealership lot, getting in the new car and then driving away with the Subaru in the rearview...tears, you guys. Seriously. It had me up in the middle of the night. I thought, I can’t drive the Subaru to the farm. I can’t do it. And yet, I must. It has to be me. The difficulty I am having with this task troubles me. It’s a car, not Old fucking Yeller.

I’ve been driving it for about 10 years. My sister Becky bought it when I started watching Molly because the car I was driving at the time wasn’t the picture of child safety. So for a while it was just the Molly-mobile---Bec’s extra car that I drove solely when schlepping Mol around. Then I moved to NYC and when I came back about a year later, Bec and I worked out an arrangement (since I had gotten rid of my own car before heading to New York) that I’d watch Mol again and she’d pay me a little less for nannying and I could have the car. (No small generosity on Bec’s part.) It’s been a good car. All-wheel drive. A friend. It’s a green wagon with dents and dings all over it now. A massive hailstorm a few years back that devastated the inventory of car dealerships in the area, left about thirty golf ball-sized dimples all over the hood. I loved the character that hail gave the car and never wanted to fix it.

Dan and I agreed I should drive it around these last couple of days----have a proper goodbye and all. It reminds me of when my mom walked our dog, Charlie, up to the school playground for a visit when I was out for recess in fourth grade. I didn’t know it was the last I’d see of Charlie (who was a bit of a biter and probably shouldn’t have been around a schoolyard full of kids). The Subaru didn’t pass inspection and is emitting a deep muffler-related growl. It shakes too and is probably unsafe for long distances. I wanted to put in the $2500 that it needed to pass inspection. (My real goal was to hit 200,000 miles and become part of the Subaru High-Mileage Club. This is a thing. We’re at 179K.) But it’s a 1999 and Dan is ready for a newer car---specifically one that does not have a tape deck. He also feels like the $2500 repairs are adding up and that it’s just time to put the car down. He’s right. Still, I would have hung on to it...

This was the car in which I drove my mom to chemo and we listened to 50’s music and sang along. This was the car in which I waited in the school pick-up line for Mol. Once, Dan velcroed bags of chips and packages of Oreos and peanut butter crackers all over the soft fabric of the Subaru's ceiling so that Molly and I could ceremoniously choose our after-school snack each day and then just reach up and pull it down. Another time, I came home to find L-O-L-A in small silver letters stuck to the car’s bumper.

The guys at the dealership mentioned this when they looked at the car for its trade-in value. We joked that it was the Lola Edition.

I’d probably hang on to it if we weren’t renting an apartment and had a proper yard to park it in for the next 20 years. That car is Molly as a nugget. When she dropped food in the backseat I told her it was okay because there were all sorts of animals who lived under my seats and they’d eat whatever she dropped. “You’re feeding the animals, Mol.” After that I always found so much food down there.

That car is my mom. She was in the passenger seat when she got the phone call that a scan showed that the cancer had not spread to her brain. She’d grabbed my shoulder---I was so scared I almost drove off the road---and then wept tears of relief.

That car is Lola. A twenty-something child of living parents. That car is a relic from another world that no longer exists.

Even the smallest changes feel that big right now. I know it’s not rational. I know we’re fortunate to be able to get a new car and I know I will be excited once the pain of this goodbye has passed. But I feel particularly brittle as I realize just how sensitive I am right now to losses of any kind. I can’t help but wonder if everything will always feel this hard.

Off I go now. Our final drive. For the past three years the Subaru has been a tear-catcher. A loyal friend (with a tape player). RIP, Lola.

Monday, March 25, 2013

Fungus fucks

You guys, I'm going to lose my shit. Have you heard of these things---fungus gnats? They're similar to fruit flies but seem smaller and more annoying. We don't have an infestation but enough of the little fungus fucks to piss me off. Apparently they feed on house plants. I've put my plants outside for several hours at a time---hoping to freeze the fungus fucks out---to no avail. This weekend Dan poured a dish soap and water solution on them---enough to soak the roots---and we left them outside once again but though there are less of them, the problem has not been entirely eradicated. And I think seeing one or two means that pretty soon they'll get humpin' and there will be more fungus fucks on the way.

I love my houseplants. I love that I have kept them mostly alive. I felt sad watching them through the window, shivering in the cold breeze outside like scolded puppies. But if they have bugs, I'm willing to let them go. (This, I'm certain, is also how I'd handle a child who came home with lice.) My next step is to repot all the plants with fresh soil but I'll admit that I'm a little hesitant to take on this project until the temps break fifty degrees and I get a sunny day. (Once again, I'm wary that this could be a potential parenting technique---my not tending to my kids' needs until the weather gets warm and I see the sun.)

The thing that is so, so aggravating about them is that they are attracted to light so they want to get all up on my computer screen (as if I need another reason to shut my laptop). Also, because apparently fungus fucks are the worst creatures of all and are attracted to sources of carbon dioxide, when they show up, they head for my mouth and nose. For my mouth and nose, you guys! My innocently open mouth and helplessly open nose.

The problem isn't so bad that I'm sitting in a swarm of bugs, the idea of which upsets me to even write. (Mercifully, I've never been swarm-of-bugs depressed. I remember listening to Paula Deen talk about how the lowest point of her depression was when she watched a pile of her pet bird's droppings that had amassed on the floor get carried across the room by a pack of roaches. The image has never left me. I'm sorry to have put it in your head but I heard that story over five years ago and I've really needed to talk about it.) The fungus fucks are not even swarming around one particular plant, which is part of the problem. I can't find "the source," which is what every website tells me I need to locate if I really want to take care of the situation. It's not an infestation (yet), it's just that every twenty minutes or so, one floats in and gets up on my grill and I shake my face and flail my arms and scream, "Get away, fungus fuck!" and then it flies away only to come back and haunt me a few minutes later.

It's making me just crazy enough to need to vent about it here...and maybe move.

Anybody know anything about fungus fucks?

Please pray for my mouth and nose.

Saturday, March 23, 2013

Your computers are all broken. I posted this Thursday.

I went to Joyce Maynard’s writing retreat down in Guatemala; did I ever even say that?

Okay, guys, I have to take the story in chunks. One of the things Joyce worked with us on down in Guate was easing into our too-big stories. Finding the “container”---the manageable inch of time, the symbol, the relationship---with which to reveal the greater/bigger/heavier truth.

Por exemplo: Some bloggers might find it daunting to explain how ten days of international travel, female/writer camaraderie and $2 margaritas changed their lives. (They might find it particularly daunting to explain this by an arbitrarily chosen day, such as Thursday.) So, instead of taking on THE WHOLE BIG, GIANT STORY, they might opt to parse out a smaller theme or bit story---one night in a hot tub---to demonstrate the larger truth or just get themselves into the writing. (They might also extend the deadline a smidge.)

Despite spending over a week learning this container lesson over and over, I still felt pretty overwhelmed when it came to writing about the week. So my writer friend Aviva put it to me this way: “Maybe don't try to write the whole motherfucker/megillah.”

(We were fast friends.)

Her suggestions for potential “containers”:

a) what I packed
b) travelling business class
c) toilet paper as behaviour modification
(She’s Canadian so she spells things prettier than we do. Even when the sentences are about toilet paper. And, don’t worry, we’ll get to the toilet paper.)

The problem is, I write my way to understanding. So, for instance, I might have a nagging feeling that the toilet paper situation---in Guatemala, where you throw soiled TP into a trash can beside the toilet rather than flushing it---holds emotional/spiritual significance, but I probably won’t understand why this is so unless I fuck around for 10 pages about it.

It’s not an entirely efficient process for a writer. (And it is an entirely inefficient process for a human who would like to live an actual life rather than intellectualize it, but that’s another story. See? So many stories! And we’re still on the toilet paper!)

I have to start somewhere (or not write here for another three months) so I shall return to the teachings of my very first governess, Fraulein Maria who used to say, “Lola Dear, let’s start at the very beginning. A very good place to start.”


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To get myself ready for a ten-day writing retreat in Guatemala, I go to see The Hobbit. Twice. It’s a three-hour movie. There’s lots of sword play. The second time, I endure the 3-D version alone in a theater on a Wednesday afternoon wearing the big plastic glasses. I need an epic tale; I go seeking bravery.

(And with that admission, I hand you my resignation from the Cool Kids’ Table.)

Really, I just need the ten minutes when Bilbo Baggins, the hobbit, is asked by Gandalf, the great wizard, to join the dwarves on their journey to reclaim their homeland, currently inhabited by a deadly dragon.

Gandalf says he is looking for someone to go on an adventure and Bilbo refuses saying adventures are “Nasty, disturbing, uncomfortable things. Make you late for dinner!”

When Joyce Maynard sends me an e-mail in January asking me if I’m interested in attending her annual February writing retreat in Guatemala, my mind travels through the hassles of flying in the middle of a New England winter and lands on the thought of sleeping on an airport floor for two days.

Plus, we are a week into January and my Christmas tree is still up. How could I possibly go to Guatemala?

Gandalf calls Bilbo on his shit: “You've been sitting quietly for far too long. Tell me, when did doilies and your mother's dishes become so important to you?”

Dan sends me six e-mails.

Go! Just go!

Do it, baby!

Say yes with abandon!

Do not hesitate!

Go, go, go!

(Am I being pushy?)

His enthusiasm makes me mad at him.

I haven’t traveled by plane since my dad died in April. I was worried my parents’ house would sell while I was gone and I’d miss the opportunity to say good bye. Joyce Maynard’s house in Guatemala may soon be swallowed by the rising of Lake Atitl├ín. I’ve read about it an article she wrote for The New York Times Magazine. I’ve also studied the picture of the volcanoes rising out of the lake (and read the Commonly Asked Questions and the near-twenty page info packet) on the workshop website several times in the last years.

Dan says it’s meant to be. That I need something like this.

Gandalf says, “I remember a young hobbit who was always running off in search of elves in the woods. He'd stay out late, come home after dark, trailing mud and twigs and fireflies. A young hobbit who would've liked nothing better than to find out what was beyond the borders of the Shire. The world is not in your books and maps. It's out there.”

This makes me cry underneath my 3D glasses.

I was such a muddy kid. In high school, a war correspondent came to speak to my journalism class and I listened to him talk while imagining myself ducking fire and tucking behind walls of half-collapsed buildings with my reporter’s notebook. It wasn’t the future I necessarily wanted, but I wasn’t afraid to let myself imagine it. It wasn’t outside possible.

Guatemala feels outside possible. For the last couple of years, just getting myself through the lobby and to the darkness of a movie theater has been an act of great daring.

It started before my parents died but has of course gotten worse since then. Two weeks after my mom died, Dan and I went to an indoor farmers’ market. I had to back out of the busyness of the stalls and towering heaps of potatoes and heads of lettuce to the edge of the greenhouse to catch my breath. All the people, all the conversation and exchanging of dollars and bunched carrots---I thought it was going to crush me.

I write Joyce, thanking her for the invitation and telling her why I’m hesitant---that my biggest fear about going is that I’ll wake up and realize I am in Guatemala and not the comfort of my apartment with the shades drawn. She tells me this isn’t a good enough reason not to go.

“Money issues would be an understandable reason. Your best friend's wedding would qualify. So would allergy to sun, water, birds and stars.”

Joyce Maynard knows that both my parents have died. Joyce Maynard knows me. Four years ago I wrote Joyce a letter after reading her memoir to thank her for writing it. I’d never written an author before. I’d never seen such honest writing. I told myself that if I got any kind of response---even a “please don’t send letters to my home”---it would be the universe validating that I was on the right path, that I was supposed to be a writer. She e-mailed a week later and I tacked it to my bulletin board. Two years after that I went to a weeklong writing workshop she hosted on Star Island, off the coast of New Hampshire. I’d been anxious for that too---my mom had been dead nine months and my dad’s tumor had been diagnosed---but I knew I couldn’t live with myself if I missed the opportunity. I was only an hour from my apartment for the entire week but I came home feeling like I’d seen the world.

Guatemala is not an hour from home and I’ve lost interest in seeing the world.

I’ve lost interest in seeing the grocery store.

I’ve lost interest in friends. And writing. And eating.

Dan highlights lines from Joyce’s note:

healing place

I take very, very good care of you

things happen to people when they come here

Joyce’s mother died from a brain tumor, the same type as my dad’s. Both her parents were dead by the time she turned 35.

She knows this loss and she thinks I should go. Dan thinks I should go. The therapist, who isn’t supposed to tell me what she thinks, thinks I should go.

My friend Aviva, who I met at the Star Island workshop, thinks I should go too. She’s trying to convince us both to go to Guatemala.

“Why do I associate travel with death?” she writes in an e-mail.

She is afraid of dying on the three-hour van ride along the winding dirt roads to where Joyce lives on the lake. I’m not afraid of dying. I’m afraid of being a human in a room with other humans.

I write, “It’s probably a sign of a good travel companionship, both of us being terrified and all.”

“Do you think fear + fear might equal bravery?” she asks

“Fear + fear + meds might equal bravery,” I answer.

After my mom died I told myself that I never needed to be scared of anything ever again. I’d knelt in front of her face, looking in her scared blue eyes as she panicked for breath. I had turned up her oxygen and calmed her with my voice--- “Through your nose, my Mama. You’re okay.”

I had already lived through the scariest thing.

Dan sits beside me on the couch while I book my flight to Guatemala City.

My stomach heavy, I quote The Hobbit.

“I’m going on an adventure.”

To be continued...probably. (Not by Thursday.)

Thursday, March 14, 2013

Paco told me to write.

And then he tagged this wall. (Photo by Aviva Rubin.)

Um, so...hey.

I like your hair...d’you do something new to it?

No? Well your skin really glows in this January February March gloom.

Plus that color always works so well on you.

Very slimming.

Very slimming.

If I didn’t know better, I’d think you had a tapeworm.

I meant that as a compliment.

So, um, how have you been?

Oh yeah, me too. Soooooooo busy.

Hey, Boo?

I’m sorry.

I’m sorry I did that sociopathic break-up thing where I just pretended we weren’t hanging out and getting close these past years and just dropped off.

I’m sorry I’m here saying sorry again.

I just couldn’t get myself to post anything. I just didn’t feel like talking to anyone. I hope that doesn’t sound rude. I think we know by now that this is my shit. I just felt sort of meh about connecting. Sort of meh about everything really. It was all a little meh in these parts for a while.

And did I want to explain that? Did I want to say meh anymore than I already have?


Nay, nay.

And if try to embark on an explanation now, then this will just become another entry I never post. I know this because I wrote most of this two months ago and then as I started getting into it----writing about anxiety, depression and meds, oh my!---I got very holy fucking meh about posting it. So I put it away and then tried again two weeks later. Same thing happened. And then I just kept taking it out and putting it away again and again. (If you are reading this, it means a small battle has been won.)

But I’ve been thinking about you guys this whole time and wishing I could just call and leave you a message (I’ll admit, even in my fantasy I prayed to get your voicemail) so I could say:

Hey. It’s me. I miss you, Baby. I heard “Groovy Kind of Love” on the radio the other day and it made me think of you. I’ll never forget all that you did for me these last three years. All that you mean to me. I value and appreciate you, Boo.

And then, if I was a little buzzed up, I might sing a little.

When I’m feeling blue
all I have to do
is take a look at you
then I’m not so blue.

Really, Phil Collins? Twice you say blue? Twice?

All of this would have still been on your voicemail.

Then you would have heard me weep...or fall...or yell at my phone---Turn off! Turn off, Gadget!---and you would have known I love you.

But, no.

I stayed away. There was too much to say and I thought I wanted to be alone. I did want to be alone. I know how I sound. I understand if you think me a terrible ingrate right now. I felt that way too. When you guys come here, I am a writer whose work is being read and that’s a fucking privilege I don’t take lightly. More than that though, you guys are smart and safe and have been incredibly supportive through the crotch and when I disappear it makes me feel like I’m cheapening our thang.

At the same time, I didn’t want to disrespect you by telling you half-truths. Just the rosy. Next month it’ll be a year since my dad’s death and the last year---both parents being gone, the house on the market, the changed backdrop of life---it’s been, I’ve been, all over the place.

And I didn’t want to put my “all over the place” out there. You’re probably thinking---Oh, The Spew got hacked. All this talk about privacy couldn’t possibly be coming from the same brain of the girl who gave us the play-by-play of her colonoscopy.

Don’t I know it. Sometimes it feels like there are 17 people in my head (one’s named Paco) and they all have different boundaries. Some of them know I’m a better person when I reach for human interaction. Others of them are all, “Bitch, don’t you walk out that apartment door. You know we like our smoothie at the same time every day.”

But last month I went to Guatemala. And it was a fantastic adventure and the best reminder of why I have to fight---fight like a mofo---to be well and rebuild and create a bad-ass life. And I am straining every muscle of my hands and chest and heart to keep hold of that knowledge because depression is always trying to strip it from me. So I want to write something here about the trip.

Let’s give me a week. A little cushion. Today I feel strong. Tomorrow I might not. But I’m walking and trying to get to sleep at the same time every night and doing all that self-care bullshit that makes me feel like I’m eight-years-old, but which I know is always the foundation for any sort of lasting positive change. I should be able to get something post-worthy together by next week. Even if you’re not here---and I really understand and accept that most of you may not be here anymore---I’m going to get something up about my trip by next Thursday. (If nothing else, you'll get a poem.)

But I really want to write about it because:

It feels pretty wrong that I didn’t even tell you I was going, given that you guys were the first ones I told about the dream of taking this trip.

And because:

I don’t think I want to be alone anymore. Not all the time anyway.

Smoothie or no.