Two and a half years ago, I co-founded this dKos series with the help of a couple great women, both of whom (like me) had recently lost a beloved family member after long illness. Writing and commenting on these diaries has helped us and many others through some tough times.
This past Thursday, one of those two wonderful women, exmearden, sent me this:
For the record, two weeks ago I was diagnosed with cardiac angiosarcoma with metastasis to both lungs... It's a cancer that is highly aggressive, exceedingly rare, and mostly terminal, averaging around 8 to 12 months survival after diagnosis. What I've been trying to nail down with my health this year was not an autoimmune disease as the many docs I saw believed it to be. The key was the coughing up blood in late May, but even then, the pulmonologist, the cardiologist, and the family doc thought it was vasculitis. Not.
When I go for something, boy, do I go for it!
Amen, sister.
Welcome to a very special edition of The Grieving Room. Normally, the series purpose resides here, but I want to dedicate this installment to our own exmearden, to introduce her work to people who haven't been fortunate enough to read it yet, and to give those of us who love her a place to gather together and wish her well. Special thanks goes to our other series co-founder, TrueBlueMajority, for letting me pre-empt her regularly scheduled diary.
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I'm a reader. Since I was small, I have always preferred curling up with a book to just about anything else. I wish I had the gift of writing beautifully, but I'm content to be a consumer, rather than a creator. The very first thing I noticed about exme's diaries was the quality of the prose. It's not just that it flows, or that she makes her point; rather, it's the unique voice, the unexpected metaphors, the thorough research, the perfect images, and the sheer poetic beauty that she brings to her diaries. She even stargazes with style.
I'm certain souls attach to stars that burn bright, then fade, then fly away and back around in patterns of time too complex to understand, even as we plot and calculate orbits and speed. As meteors, rocks of flame and heat, our souls might cross the sky and blaze the message so quickly bright, "we are never gone, we will never die"; it all occurs within an arena so cold and still and contains spectators of infinity as stars in the field fall apart and spread their own integral elements across an infinite void. The earth tonight, tomorrow night, right now has a front row seat to a phenomenal show.
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"exme arden" is her blogging name, used for her personal blog, her diaries here, and her postings on docudharma. When I first got to know her, I thought it was "ex-mearden" - and wondered what a mearden was, and why she wasn't one anymore. I soon found out it was just a cool nom de plume. What she does with it isn't mere blogging - it's electronic literature.
Like many other lucky Kossacks, I was fortunate to meet exme in person at Netroots Nation 2008. I wasn't really planning to go -- I'm shy in crowds -- but part of me was itching to participate in NFTT. When I found out that exme won a Democracy For America Scholarship and would be coming to Austin, I knew I had to make the drive up to meet her. I can testify that she is just as interesting in person as her diaries suggest. This is the diary she wrote immediately after the NN08. More recently, she thoughtfully encouraged others to apply for a DFA scholarship and come to Pittsburgh for NN09.
My experience last year in Austin at NN08 did change me. It brought home to me the simple fact that our world is a small world. Even the little things we do and say - in our homes, in our communities, at our work, in our towns, counties, states, in our nation or through the blogosphere - well, little things matter.
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As one might imagine, someone who helps start a grief support series is someone who has seen death up close. It's safe to say that exme has had far more than one person's share of loss in her life. The specifics of her personal losses are part of the beauty of her writing, so I am including a link to each of her Grieving Room diaries at the end of this one. Outside of this series, her perspective on life and death informs almost everything she writes, including the political. Don't miss a personal reason not to vote for McCain and connecting the dots... about walls.
Fences. Walls. What we keep out, what we try to hold off, what makes us feel secure. What protects us, what imprisons us. Where is the line?
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Exme writes a tribute diary like no one else can; it is one of the ways she pays respect not just to the departed, but to the fact of death itself, something most people would rather ignore. Here are some you might enjoy reading - remembering Dua Khalil Aswad, remembering Cyd Charisse and remembering Murray.
Some people you know wide, some people you know deep.
Wide is knowing a lot of small details about someone and knowing the right details may fit together in a mosaic that makes sense of a person and their character. Maybe that mosaic gives you background enough to maintain a mere acquaintance, a sometime connection; or perhaps, instead, you grow a true friendship, a deep camraderie.
When you know someone deep, the details you know fall together in a pattern that allows your own pattern to synchronize with their pattern on some familiar level.
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Family connection is arguably exme's central theme. Her immediate family includes young adult daughters (and a new grandbaby - do I remember that correctly, exme?), as well as a gaggle of woozles (a dozen or so, mostly pug). In one diary, she tells the story of helping her daughter save a suicidal ex. And while the death of her sister was one of the catalysts of this grief series, even outside TGR this loss has informed a great deal of exme's writing, especially this gorgeous photodiary she wrote in honor her sister's memory, and this poignant chronicle of her niece's struggle not to lose the family home to foreclosure.
Does the heart of a house exist outside any memory of the tangible moments that mark the living within? Or does the spirit of a house, soul-centered in an aging body of wood and brick and nail, pulse simply because there are lives, loves and deaths that pass through? Perhaps an invisible, silent, tender skin of cares, of worries, of hopes, coats every moment exchanged. Coats the hallways, the rooms, the stairs, the steps leading away.
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All of this brings us back to the topic in common to all Grieving Room diaries: death. We talk about it pretty frankly here, and tonight is no different, even though our subject is very much alive, and doing her damndest to stay that way. She has been ill for a while, with symptoms that didn't ever seem to add up to a diagnosis, yet were severe enough to require serious painkillers. One of exme's more recent diaries was an installment in the health care series, wherein she outlined why she was pretty sure she had an auto-immune disease. Turns out, even collaborative medicine can get stumped when one has a cancer that is so rare that most of us had no idea one could get cancer in the heart. I am sure exme has already pondered the irony of this. Before this happened, it was an appropriate literary construct to say that exme's heart had been hurt by the cancer that took her sister. Now, the hurt is literal rather than literary. She said so herself, in her most recent TGR diary:
I think I have a broken heart. But it doesn’t bother me anymore. Really. Because I can still savor stuff. The bird that sang in the apple tree this morning, and shook its wings enough to make the blossoms fly. The taste of homemade crème brulee, the aroma of the turbinado sugar as it broiled, a sweet gliding nectar thinly caramelizing the delicate buttery texture of the custard below. Taste, taste, taste. And sound, the sound of life every day.
Don't bother googling her disease - it's depressingly bad news. The good news is that the real person whom we know as exme is being treated by specialists in one of our country's finest cancer centers. She is currently in the hospital, finishing an aggressive chemotherapy that takes five days, inpatient. When she feels better, she plans to write her own follow up. She told me she'd try to get on here tonight, if she can sneak on to the computer at the nurses' station.
So, what CAN we do for her? We can send her our very best, very strongest healing thoughts; we can read her diaries; we can KNOW her.
Please go explore exmearden's complete diaries - there are many more treasures beyond the ones I have linked to above. I think they would make a fantastic book, actually. Her words need to be read and understood by more of us.
I will close by inviting you to get to know exme through her chronicles of her grief journey. As our most prolific TGR diarist/host, she has given our little series its greatest gifts. They are, in chronological order:
TGR: a Monday night series
TGR: Memorial Day
TGR: The Bedroom
TGR: other griefs: a Monday Night series
TGR: Dads
TGR: the end of the sentence
TGR: betrayal
TGR: who wants to live forever?
TGR: What wasn't done
TGR: This coat, this ring of life
TGR: Whistling down the Wind
TGR: ebb and tide
TGR: the things you think you want
TGR - the old ways
TGR: the fringe of consciousness
We're pulling for you, dear exmearden.
UPDATE: action! I'm very happy to see the outpouring of love for exme, and even more happy that she could be here tonight to read and comment. Thank you for all the kindness you've shown.
If you're of a mind to help exme in a more concrete way, she has a suggestion for one way you can do so.
if you are in the Oregon area, I had to send four of my pug-a-pom mixes to the Oregon Humane Society to adopt out, which broke my heart. They are a no-kill shelter and have been very kind accepting four of my some twelve dogs. Any donations are welcome to their shelter - in honor of Goldie, Sam, Edward, and Alice, my babies.
Drop a tip into the shelter's jar in honor of exme, and to help care for her woozles. The direct link is here. Thank you!