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: 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. 


Comments

  1. Here's another one from my Mom-This too shall pass. And yes, your weakness opens the door to your kids strength. Love your writing. Love you.

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    1. Thanks, Katie. I need all the self-help mantras I can get these days! Love you too.

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  2. I still am not a great believer in all things for a reason or everything is as it should be, because it makes the world sound so unidirectional and scripted, and lacking people's input and impact. I keep coming back to the little yellow cartoon poster in my 5th grade English class, "When life gives you lemons, make lemonade." You make phenomenal lemonade Becca. I don't think you probably ever get to know/see how many people sip it and are strengthened by its sweet and sour dance.
    I'm so sorry that you can't control your life the way that you want/should be able/deserve to. It's not fair or sense making. Thank you for writing and being.

    Your strength and your writing from your couch will push me off of my chair and computer and out the door. That's pretty powerful.

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  3. Hokusai says by Roger Keyes

    Hokusai says look carefully. He says pay attention, notice.

    He says keep looking, stay curious. He says there is no end to seeing.

    He says Look Forward to getting old.

    He says keep changing.

    You just get more who you really are.

    He says get stuck, accept it, repeat yourself as long as it is interesting.

    He says keep doing what you love.

    He says keep praying.

    He says every one of us is a child, every one of us is ancient,

    every one of us has a body.

    He says every one of us is frightened.

    He says every one of us has to find a way to live with fear.

    He says everything is alive -Shells, buildings, people, fish,

    Mountains, trees, wood is alive.
    Water is alive.

    Everything has its own life.

    Everything lives inside us.

    He says live with the world inside you.

    He says it doesn’t matter if you draw, or write books.

    It doesn’t matter if you saw wood, or catch fish.

    It doesn’t matter if you sit at home
    and stare at the ants on your veranda
    or the shadows of the trees
    and grasses in your garden.

    It matters that you feel.

    It matters that you notice.

    It matters that life lives through you.

    Contentment is life living through you.

    Joy is life living through you.

    Satisfaction and strength is life living through you.

    He says don’t be afraid.

    Don’t be afraid.

    Love, feel, let life take you by the hand.

    Let life live through you.

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  4. I know you know this already but I'll say it anyway: you *are* modeling grit and perseverance for your kids. In my experience, it sucks but we rarely get to choose where we use our grit and perseverance.
    My father has had recurring pericarditis since he came down with a cold in Costa Rica that decided to settle into his pericardium, so I've seen in him the specifics that you mention, and I'm sending you strength and patience and love to go along with your grit.

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  5. Thank you. Pericarditis is a bastard. And you are wicked awesome, and yes the double-entendre is intentional. Strength and patience back at you across the miles.

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  6. Pray as if everything depended on God, and act as if everything depended on you!!! That is my favorite prayer. I work diligently to honor this prayer from the Reform Prayerbooks. Becca, I have always known how special your family is and all they I have accomplished, and my approach to life and G-d has been unwavering”. It’s not that I believe things are as they should be, but I do believe and time has proven this statement to be valid - that although there has been a devastating event, I look back and find grace and purpose. It might not be comforting to all, but for some reason, i find an inner peace and an ah-ha moment. I can’t understand it, but I journal every day and every day I am grateful for waking up, having sight, breathing air. On a truly great day, I accomplish everything on my absolute “must get done” to do list. Everyday I am grateful to God or to whatever you think Him/Her to be for bringing me to this day and allowing me the opportunity to do good deeds and make the world a better place. Okay, having said all that . . Do I tell you that you have been on my prayer list since John’s accident and every Saturday, Haim prays for you at his Synagogue. The disc I invested in is hopefully still round that gorgeous neck of yours; and I want you to not only write yourself into a good mood, I want you to write yourself a New YorkTimes Best Seller; two of them for now - one non-fiction and the other fiction, but best story you can muster. Last night on the NBC highly news there was a story about this issue occurring more regularly in women her age. I will or have already invested in The children’s Room because a very special woman in my life was helped there. I LOVE YOU COUSIN. YOU ARE AND WILL ALWAYS BE IN MY PRAYERS, AN INCREDIBLE WRITER AND A FABULOUS SURVIVOR. Love, Fran

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    1. Thank you for your love and loyalty, Franny. xoxo

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  7. i am so thankful you write, and you do it so well. i hope you are finding moments of ease, awe, and strength every day. i'm sending good thoughts your way.

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  8. Your writing is always so moving Becca. Thank you for sharing your experiences. Much love, strength and peace to you and your wonderful children.

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    1. Thank you, Kristin. Alder loves his bed fort inspired by Clara's BTW. Love and hugs to you.

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  9. Extraordinary human. Extraordinary life. Extraordinary wisdom. Extraordinary soul. And your writing......

    As you, I'm not comforted or assured by simplistic platitudes for my circumstances. Good or bad.

    As you, I'll also consider the wisdom shared by your teenage friend. When a person lives with devotion, purpose and intention, as I believe you do, then perhaps everything is as it should be - for you have done your best.

    You're a considerable force, Becca. Rose and Alder are very fortunate to have you as a role model. So am I.




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    1. Thank you, Clay. You are most definitely a force as well.

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  10. One of my mantras is “Things will work out one way or another.” For some reason it comforts me.

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  11. Yes ... kind of a This too shall pass notion ... one way or another, time marches on and we get through things.

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  12. I am always mystified why some of us are heaped with mountains of unwanted challenges and others of us just plod along on the even ground taking life for granted. As always, the Stillwater Caouettes are holding you in their still strong but aging hearts...the beat goes on. love, carol and mick

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    1. Thank you - much love and appreciation to you and Mick.

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  13. Becca, as a long time acquaintance, connected through many mutual friends, I've long admired your resilience, resolve and poise. I'm reading your story with much concern. May your eating regimen heal you, may your best days lie ahead, and may you be able to relax, totally relax today. Brandee Gerke

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  14. Thank you, Brandee! All best wishes back to you.

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  15. Well, it's my spring break, so I was able to read your latest post as another individual with pericarditis. I applaud your efforts to return to a life in full force, and while disheartening( pun intended), I feel it is in the moments of " normal" that my own eyes are opened up...like a person who has been blinded and wakes up to see the world in all its glory! I am now over two horrendous flares starting in August 2017 requiring me to add 2400mg ibuprofen to my Colcrys but still had pain above that at night like crazy. The last one, November 2017, was onset by the crazy influenza season; pretty sure about that! (Guess I may have to wear a mask when I teach from now on during flu season.) But, every morning, I feel more and more normal. I feel the need to go up to complete strangers and tell them what a beautiful day today is! You, you have been through more than one person should have to, but look at you! You are amazing!!!! I'm not giving up either! What doesn't kill you can make you stronger!!! If you haven't added sour/tart cherries to your diet, consider it. I usually eat three cups a day now. My cardiologist is recommending Colcrys until July, but after that I am going to try to do just diet with meditation and light exercise. Oh, I also gave up dairy. I didn't drink milk really, but I found cheese was increasing my resting heart rate, so I decided done with that too! I need meditation because sometimes my job and life can cause stress. I know for myself that stress can make me sick; when I was 12 at camp, stress lead me to a double ear infection and strep throat after 5 days, so I think flares can happen quick for me when I have stress. I otherwise have slow building effusions. It usually takes 6 months off of the medication until I had an attack in the past. This year was different than 2015 and 2016. I wish you joy and happiness! Rose J from Minnesota

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    1. Rose, thank you for this wonderful note. I'm sorry I somehow failed to see it until just now! I just finished my Colcrys taper today ... tomorrow will be my first medication-free day (except my breast cancer drugs, ha ha) since January - YAY! Monday is the marathon I was supposed to run, but I'm pretty well over my grief about that. I walked about six miles today and I think that as long as I don't excersize TOO intensely, and stick to my anti-inflammation diet, I will be ok ... hope springs eternal. I'll look for sour cherries - three cups a day is a lot! I wish you all good things and that we can both vanquish the demons of the pericardium forever. Mecca

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