Sunday, February 25, 2018

Chairlift Reveries

Thank you, friends and family near and far, for your expressions of caring and concern over the past weeks. I am feeling much better physically though I am still on multiple drugs, semi-bedrest and my self-prescribed anti-inflammation diet. It would be useful to know which of these tortures is/are the key to my heart sac’s happiness – but I don’t want to find out the hard way, so clean eating, continued slothfulness, and a slow tapering of my medications is on order.  

Shortly after posting my last missive, I came across something I wrote a year ago that, oddly enough, seemed to presage the theme of my most recent post. I guess I have been grappling for some time with this notion of when and how we show weakness. With that I will share this little ski-season story-within-a-story that I wrote last year...
The chairlift lurched to a stop shortly after Alder and I got on. We dangled in the air for an uncomfortably long time and I began to regret getting on the lift. We’d been stopped too long to be a case of a loading mishap when the liftie guy turned skiers away. “We’re going to get everyone off,” I thought I heard him say.

Alder was oblivious, and I did my best to conceal the dread coursing through my body as an old memory resurfaced. When I was 8 years old – Alder’s age – my family was skiing at Bretton Woods in New Hampshire when the chairlift conked out.

I was riding the lift with my mother. As we hung unmoving, it got cold. It got boring. I metered out the butterscotch candies in the breast pocket of my ski bibs, sharing with my mom, who became increasingly nervous.

It is a well-known fact that my mother is afraid of heights. I grew up routinely scouting for elevators to get around escalators, which my mother could ride up but was constitutionally incapable of riding down. Once in New York City there was no alternative to a down-escalator, and my mother convinced someone to turn the entire thing off so she could walk down it like a queen descending the royal stairs. Such is the power of her fear. 

It is perhaps lesser-known that when a chairlift is moving, you don’t think much of it. But when it stops, it doesn’t take long to notice that you are sitting on a little hunk of metal suspended from a cord strung across the sky, and that there’s a significant amount of air between you and the ground below. 

Needless to say, this combination of my mother and a stalled-out chairlift was not ideal.

Just when I thought we’d be stuck til my 9th birthday, the ski patrol came to tell us we would have to be evacuated. I was too relieved to wonder what exactly that meant – I must have assumed there would be some kind of magic carpet ride. The reality went like this: a ski patroller throws a rope over the chairlift cable; another grabs it on the other side and attaches a little disk to it. Then they pull the rope up until the disk hangs in front of the chair. The people in the chair drop their skis and poles and, one at a time, grab the rope and jump onto the little disk. It’s like hopping onto a rope swing, only 30 feet in the air and in ski gear. Finally, the ski patrollers lower the rider to the ground.

By the time our rescuers reached my mom and me, we’d been waiting for several hours and my mother’s anxiety had risen in inverse relation to my butterscotch supply. When it was our turn, she panicked. Fighting my own fear – the ground looked so far, the wooden disk so small – I knew I had to go first. Adrenaline overpowered anxiety; somehow I did it and then somehow I coaxed my mom through it.  

We met up with my father and brother, who had been a few chairs ahead of us. We each received, for our troubles, a card good for one complimentary drink at the lodge. My parents scoffed at the chintzy drink cards (but you better believe we claimed our free beverages). We never went back to Bretton Woods.

But we got a story. And I got something that I didn’t immediately recognize. My ever-ebullient, confident mother had been made small and fragile. I had fed her candies, comforted and distracted her. I had become the caretaker. I had become the strong one.  

As Alder chattered about whether we should ski the gulley or the traverse to Moondrop, I wondered if we were in for a long cold wait and the rope-and-disk routine. I wondered if the staff at Eaglecrest had practiced. And I wondered about the balance between taking care of your kids and letting them take care of you.

One of my little inside jokes (as in, inside my own head) is, “It takes a village to be me.” I say it every time I have to ask a friend to watch Alder, rescue me from my latest vehicular disaster, or lend me a key to my own house.

So I think my kids have seen a pretty good sampling of my weaknesses. But I have tried to shield them from caregiving. I have tried to shield them from my emotional needs.  

When I told eight-year-old Rosie that Daddy died, she put her hands over her ears. When she removed them she said, “Who will take care of me and Alder?”

I answered with a confidence I did not feel: “I will. I will take care of you and Alder. We will be ok.”
I had had only minutes to digest John’s death, but I immediately grasped the risks. I didn’t want his death to snuff out their childhood. I didn’t want to compound the tragedy of loss with the burden of a needy parent.

I thought about all this as we dangled in our metal sky chair, Alder needling me get him lodge fries AND root beer in violation of my either-or edict. Perhaps now, I thought, six years later, it is time to let my children in on the open secret that I need help too. We try to teach our children compassion and giving – we cook dinner for the homeless, donate clothing to the needy – but it’s arms-length, helping the Other. The truth is, there are needs much closer to home, within the home, within each of us. We need to teach our children to attend to family and friends and their own fragile souls with kindness and compassion.

Eventually, we all need to learn that none of us is infallible, the world is not black-and white, we are each by turns strong and weak and we need to hold each other up as best we can. 

Dog was unimpressed by the video of herself Rosie showed her. 

Snow skating in Menotomy Rocks Park (I know, he should be wearing a brain bucket!)

We had a great visit with my dear friend Margaret and her family in Vermont last week. 

We call her Rosie "Chloe Kim" Caouette. 

We had to quit after two runs at Bolton Valley due to driving rain, high winds and fog so thick you couldn't see past the end of your ski pole. But afterward Alder said, "I forgot how fun skiing is."

I felt like I was home - Vermonters and Alaskans have the same taste in cars. 

Friday, February 2, 2018

Revenge of the Heart Sac

As most of you know, Alder and I relocated to Arlington, Massachusetts at the end of the summer to join Rosie for her last years of high school. After 23 years in Alaska – and frankly never having resonated with this place – it’s a big transition.

I decided to combat my sense of dislocation by running the Boston Marathon. Brilliant, I know! It accomplished all kinds of good: (1) help others – check! – by running as a fundraiser for The Children’s Room;[1] (2) reclaim my health and confidence and kick cancers’ ass(es?) – check!; and (3) do something epic that’s endemic to the area – Boston Marathon totally checks that box! Finally, I figured I would model grit and perseverance for my children.

Instead I am modeling hospital gowns. I am modeling defeat. I am modeling fatigue and despair. I am modeling Becoming One With The Couch.

Training was going ok. I wasn’t feeling my strength flooding back as I used to when I would ramp up my running, but I was able to push through and follow a training regimen. The first hint of trouble came 9 miles into a 10-mile run, when I had difficulty breathing. I slowed my breath, blew out through pursed lips, and finished the run. Then I forgot about it and continued training.

A week later, when I ran 11 miles, the feeling came back and did not go away. And this time I recognized the clear and undeniably ominous hallmark of my pericarditis: a pain in the center of my chest that kicks in partway through inhalation, like a door closing, a certain inner clutching, stopping inhalation cold. Fever and night sweats soon joined the party.

Like last time a litany of woe and waste preceded proper diagnosis and treatment[2] – despite my knowing exactly what it was this time. This disease often eludes detection, so I was not surprised when I was sent home from the emergency room after seven hours of tests apparently indicated there was nothing wrong. This was followed by more nights punctuated by pain and robbed of breath, days on the couch, and two visits to cardiologists. Finally, 10 days after I knew I had pericarditis, I had an hour-and-three-quarter-long MRI and was told – guess what! – I have pericarditis: the sac around my heart is inflamed.

The treatment is non-steroidal anti-inflammatories, harsh drugs that tend to trash the gut. If and when those fail, the last resort is steroids. Steroids work, but they’re slow-motion disasters, silent typhoons, the climate change of the body. I spent two years trying to wean from steroids after nothing else would control this disease the last time.[3] My bones paid a heavy price. 

So I’m trying cannabinoid oil and giving up eggs, sugar, coffee, dairy, alcohol and nightshades[4], among other gustatory suspects. It’s not as hard as one might think; desperation is the mother of discipline.

And I am, maddeningly, resting. I’m supposed to keep my heart rate under 100 beats per minute. I still feel the pericarditis – subtle when I’m sedentary, blocking breath if I exert myself.

It’s taken three weeks to concede that my marathon is toast. This is the hardest part - giving up my vision of myself at the start line inhaling the exuberance of the moment, running, finishing, achieving a goal, having a purpose, strong in body and spirit. It has been a challenging fall and winter. I remember learning in birth class to pick a focal point – something to stare at that would absorb one’s brainpower and keep it from wandering back to the pain. The marathon was my focal point.

Last night I interviewed a high school senior for my alma mater. We spoke by phone, her openness melting the distance between Arlington and her small Alaska town. As her family’s story spooled out, I learned of alcoholism and addiction, upheaval and illness. She spoke also of friendship, art, laughter and love. I asked if there’s any advice she’s gotten that she particularly appreciates. Yes, she said. Her grandmother told her, “Everything is as it should be.” It works for her, she said.  

I have long scoffed at those who tell me everything happens for a reason. I don’t think there was a reason or purpose to John’s accident, to my cancers, to any of the bad or good things that have happened to me or to anyone else. And yet I found myself considering this teenager’s wisdom, trying it like a new drug or diet. Everything is as it should be. It is calming.  

Everything is as it should be: My two children are alive and well. And we are under one roof, eating and playing and screaming at each other to STOP KICKING THAT BALL IN THE HOUSE. In high school I studied German. We read a book called Der Geteilte Himmel – the divided sky – about the wall that then cleaved Berlin in half. Over the past few years I have thought of our family’s situation – Rosie in Arlington, Alder and I in Juneau – as our own divided sky. We have yearned to remove the wall and live under one sky.

Everything is as it should be: On trash day, as I lay on the couch, Alder broke down boxes and maneuvered trash cans through snow and ice. Rosie stays home more often, doing spectacularly messy cookie projects with her brother and encouraging me to do things that might bring me joy. There is a dual nature to all things. My weakness opens the door for my children’s strength.

Maybe my weakness is part and parcel of my own strength. I am frustrated because I am tenacious. I am laid low because I flew too high.

I am learning yet again to let go. Some days that’s easier than others. But just when the sap in the marrow of my bones feels dry and writing bad poetry is all I can seem to do, someone brings a small gift of laughter or companionship. And hope lights up again. Thank you, friends and family and neighbors and strangers, for your love and support – you are the jumper cables for the drained battery of my spirit.

[1] Here’s my fundraising page! Please feel free to help me make something useful of this debacle by supporting the work of The Children's Room, a nonprofit that provides support to grieving children, teens and families:
[2] Prior post on the onset of my pericarditis during breast cancer treatment:
[3] Prior post on my long struggle with pericarditis and steroids:
[4] Nightshades are a group of plants that includes tomatoes, potatoes, peppers and eggplant. I love them all. I also love the name – such a poetic term for a bunch of veggies.
Mugging with Homegirl in Gloucester. Because she let me.

A boy, a ball, a beach = bliss.

A boy, a ball, a bedroom = screaming sister. ("STOP YOU ARE DESTROYING MY EARDRUM!!! expletive expletive expletive)

Mosaic Oasis is Alder's artistic respite. 

The Children's Room Miles and Memories Boston Marathon 2018 fundraising team. Better days.  

As Alder says, "The creepy thing about here is, you can't see any mountains." But you can take classes on anything from Mandarin to Parent-Child International Dumpling Making or in this case, Parkour. 

Hiking Mt. Monadnock in the fall. The mountains are always my happy place. They are just so far here.