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.

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[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: https://www.crowdrise.com/o/en/campaign/thechildrensroomboston2018/rebeccabraun3

[2] Prior post on the onset of my pericarditis during breast cancer treatment: http://alaskamamaruns.blogspot.com/2014/02/

[3] Prior post on my long struggle with pericarditis and steroids: http://alaskamamaruns.blogspot.com/2015/

[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.