Pleasures of the Storm

We just came through a deluge! Was it a whole week of rain? It seemed like a month! Dark skies and precipitation were constants, a sprinkle serving for a break in the weather, a ferocious downpour an awe inspiring twice daily event.

As creeks rose above roads and runoff formed ponds under highway overpasses, some citizens faced flooding in their yards or homes. Those of us, like me, who didn’t need to drive anywhere and don’t have a creek hard by, could just “go with the flow.”

A storm slows my thinking to a snail’s pace, but, now that I abstain from gluten, the crippling migraines that heralded a barometric change are gone! [To those of you who hold this gluten-free business is a passing fad —  be grateful for your ignorance! May you continue to lack first hand experience with IBS or CFIDS/fibro etc.] So I  have learned to take my pleasure as it comes.

It was restful to sit on the screen porch and watch the rain come down. Leaves on the maple tree trembled as the drops hit and slid off. Swirling, muddy water slid by through the drainage ditches beside the black road, off to swell the might James. The noise of the rain varied with the violence of the storm. Our Lab hung close to my heels as the thunder rumbled around us and the lightened cracked overhead.

An additional pleasure was my delight in the overwhelming green of my immediate world. The grass was lush and the leaves on the trees fresh and vibrant. The vegetables and flowers in our raised beds grew even as I watched them. Looking out the windows, I saw the sunflowers and potatoes stretch still taller from hour to hour.

In between downpours, I’d venture out and do a bit of weeding. A careful tug would bring up a whole dandelion, root and all — always a satisfying accomplishment. My hair and shoulders grew damp and then wet as I lingered between the garden beds until the mist went from sprinkle to steady rain and forced me back inside.

Here’s another pleasure: wading in ankle deep water. I was happy to splash through any shallow puddles between the back door and the hen house. A few more steps, justIMG_20180519_164828 through the back gate, the I found the clover submerged in standing water four inches deep. The ground was soft underfoot, the clover floated around my toes, and the water was cool. A sensory delight!

Such unusual, incredible rain created a new, separate world. During those days, we lived outside of sordid politics and gross injustices against humanity. We could even set aside environmental concerns as we* dealt with more immediate problems likely brought on by man-made climate change.

The Long Rain afforded some relief from our usual anxieties and left us a thriving, blossoming, vining garden set in brilliant green from under our feet to way over heads in up-against-the-blue-sky leafy trees. The fresh morning air fills with bird song and the night begins with the high songs of peepers and the deep calls of bull frogs.

War is another kind of storm that can overflow its banks. Inside my dry island on the sofa, while the drainage ditches gurgled and the rain beat down in sheets, I read The Slaves’ War: The Civil War in the Words of Former Slaves. Now that was a storm a long time coming and still not gone. Long after those cannons quit booming, the poisoned waters still trickle through our lands.

Future times may find others looking back at our recent deluge with an understanding I don’t have, just like those enslaved children marveling at the “thunder” echoing over the Georgia hills — and not a cloud in the sky.

 

* By “we”, I mean my husband. He was out in the rain attempting to free a blocked culvert across the street. He also dealt with a failing sump pump in the crawl space under our house.

 

 

 

 

 

Heroes and chores

Sometimes I wonder where my life went. Most days seem to be a series of chores and enough days in a row adds up to a life.

Take my mission this morning, should I choose to accept it. Yes, today’s chore is to separate the wheat from the chaff, the worthy from the no-longer worthy, the just from the unjust! A task for a True Hero! An assignment for the bold and brave!

Well, not exactly. I am planning to sort the medical bills from my husband’s two week hospital stay and seven week home-bound antibiotic treatment. Also, there is a teetering pile of magazines to go through. Not exactly the fifth labor of Hercules but even Hercules probably wondered why he was spending his life cleaning the Augean stables instead of pursuing frolicking wood nymphs. (I’m not interested in wood nymphs myself but there is an entertaining novel waiting for me.)

Both sections of my assignment have pitfalls.

The medical bills are from individual doctors, two hospitals, three medical suppliers, and  labs. No two medical bills are alike. Each provider uses a different form to itemize services, credits, and charges. There are also reports from three insurance companies. I must review each one for duplications and mistakes (like I can remember what procedures were administered to my husband and when — not only was I not with him every minutes but he himself was not a reliable witness and my always compromised self * was next to depleted at the time). So there are many generous opportunities for confusion.

Figuring out these bills will scramble my poor weakened brain cells until I won’t have the mental energy for anything else today.

Sorting magazines is easier but has its own pitfalls. We have several months’ worth of publications. Usually, I sort them by date and keep the newest, but the New Yorkers are hard to give up. Of course, we’ve read the cartoons and “Shouts and Murmurs” and “Talk of the Town.” But I’m bound to run across an article on Something Fascinating That I Must Learn About but haven’t yet read so maybe I should set that issue aside to read later? But if I haven’t read it after six months am I likely to read it anytime soon?

One must be coldly realistic to sort magazines.

So this paperwork is my assignment this morning. It’s up to me to ensure the bills are addressed in a timely fashion and we aren’t tripping over piles of magazines or mail. (Mail is usually sorted as it comes in — otherwise we’d get lost in our own house.)

Paperwork is a common plague. I like to imagine that universal health care comes without any paperwork to follow the patient home. Maybe that’s a fantasy, but isn’t it a nice one? We’d still have taxes to complain about so life wouldn’t be all roses.

My husband has his own assignments and I don’t want to trade with him, even if I could.  He’s mowing the grass right now. He seems happy enough with his portion of the household burden. But he’s had a meaningful career. There is little status in the homemaking which fell to my lot by default, since I was too sick to do anything else  beyond that. So I am still, in some ways, anticipating a Life and dissatisfied with this Sisyphean procession of chores.

So is this my Life? It seems like I just finished the taxes, which was also a joyless chore, the only satisfaction was the completion of the task. Why is life made up of so much paperwork, record keeping, telephone clarifications, trick questions, excess possessions? Who benefits from all this rigmarole?  I only have a couple of good, clear hours a day. I don’t want to squander them.

Ah, well. Hand me that pitchfork. I’ve got stables to clean.

 

*Due to a stubborn illness — ME or chronic fatigue or CFIDS/fibromyalgia or SEID or whatever label is attached today — I suffer from post-exertional disability. Thinking hard exhausts me. Thinking hard leaves me only well enough to knit and watch cat-videos on YouTube. Or read a romance novel. 

 

 

 

Wrung Out

Ever feel like a limp dishrag?

I feel like I’m turning into one of my knitted cotton dishrags, the original cheery color faded to a uniform blah after years of wiping up coffee stains and tumbling in the washer. I hang there, semi-dry, over the middle of the double sink. Bright sun beams through the kitchen window, making the faucet gleam and the white sink shine — but me? — even in the sunshine I’m just dull and grey.

Yup. That about describes it.

As those of you with first hand experience of CFIDS/fibromyalgia know all too well, many days we are granted only an hour or two of clarity before brain fog creeps in. The thinking brain conks out — overwhelmed by a bit of mental effort, or conversation, or noise, etc. That’s us: no stamina.

My brain is no longer screaming with anxiety now that my husband is clearly on the road to recovery after the sepsis that almost did him in. I’m done wrangling with the IRS forms and our taxes are paid (always taxing, taxes). And I’m even keeping up with the typical (for U.S. citizens, anyway) barrage of paperwork after my husband’s two week hospital stay, two surgeries and multiple consultations with specialists. The paperwork, of course, requires phone calls and being on hold and follow-up letters with corrected insurance information and correspondence and verification etc.

I am still just wrung out and not up to doing much. Done in. Not flat-on-my-back done-in —  just can’t-remember-what-I’m-doing and not-worth-shit done-in. It could be worse. It could be one of my flat-on-my-back, nasty-pain-I-can’t-ignore, short-tempered, the-whole-world-is-mud days. This isn’t one of those days when even my hair hurts.

So I shouldn’t complain.

But sometimes it’s harder to approach able-to-do-something than it is to be flat-out-not-able-to-do-anything. On my worst days, I can give up and just lay around with a romance novel and wait until it’s time to go to bed and hope for sleep (insomnia is a component of chronic fatigue syndrome) without medicinal encouragement and with the expectation of waking up in the morning in better condition.

Which reminds me: This morning I did wake up in better condition than I was in yesterday.

First, I woke up cheerful. And then my early morning piano practice went more smoothly than my fumbles of the day before.

So I guess I’ll just be grateful I’m doing as well as I am today and quit complaining

The Necessity of Levity

My usual stay-at-home garb is paint spattered, ink stained denim. But, a few weeks ago, when I had somewhere to go, I donned a brown skirt and white ribbed sweater and red knee socks festooned with frolicking sock monkeys. I topped off my outfit with red polka-dotted glasses.

I went to a demonstration. No one at this demonstration [For clean water. Why do we need to stand up in favor of clean water? Isn’t this, like, a no brainer?) noticed my sock monkey socks or my polka dotted glasses. Or if they did, they didn’t say anything to me.

But I was amused. And, Lord knows, we can all use a bit of light-hearted nonsense once in a while. Or, in my case, regular doses throughout the day.

Take that demonstration. Listening to heart-broken people describe their homes and bodies poisoned by coal ash pools leaking into the well water — that’s enough to make me cry. And it did.

Corruption is no laugher matter — and there’s so much of it! Is there really more than ever? It seems like it these days. To paraphrase comedian Jonathan Winters’ observation on little green men: “It’s everywhere! It’s everywhere!”

We are drowning in bad news. Venality chokes us, and waves of corruption pound us and toss us up onto cold, gritty sand, disheartened and desolate.* Where can we find the get-up-and-go-and-keep-going to oppose all this vileness? We need energy to stay sharp, to march and demonstrate, to write effective letters, to make phone calls, to organize and publicize, etc. —  but are we too demoralized from a daily barrage of awful news to stand up? Flattened  by despair, how are we to pick ourselves up get going again?

There’s plenty of advice out there about nurturing mental health: good food and good fellowship; fresh air and exercise; a dog or a cat or a loving spouse; sleep, meditation and music (maybe in reverse order?); gratitude and a sense of community. But following this good advice requires initiative I just may not have when I’m depressed by events in the wider world. And as a person with CFIDS/Fibromyalgia, my tank is never full anyway so I’m easy to knock down.

Levity lightens the gloom! For me, a little bit of silly is not a distraction from the serious side of life, but a figurative Chinese gong reverberating through my body to call me to attention.  Ask not for whom the cuckoo bird cuckoos! It cuckoos for thee and for me — to make us look up from the muck at our feet and gaze upon the blue sky. (Here I refer to a real cuckoo clock hanging on my own dining room wall and real muckety-muck bullshit.)

There is also a solar powered crystal rainbow maker in my south facing kitchen window.  On a sunny day, I can look up from the headlines on the front page of the Richmond Times-Dispatch and find brilliant snippets of color circling the room, a mess of little nudges to remind me to laugh and loosen up.

Somewhere in this house two plastic parakeets are clipped to light fixtures or curtain rods or a chandelier. They move around. The sight of one of these silly lime-green things can be another little reminder not to take life too seriously. Our book shelves support some heavy non-fiction but there’s a joke book on the back of the toilet and happily-ever-after romance novels on my Kindle. I always read the cartoons in the New Yorker before the features and the comics in the Richmond Times-Dispatch before looking at the editorial page. (Some of the letters-to-the-editor are funny if you forget that the writer probably didn’t think so).

Our yard sports a few ridiculous touches, too.

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A dose of levity can bring me around. I am serious because a joyful life is worth fighting for and I need to laugh because it’s the only way to stay serious and keep fighting for a joyful life.

What keeps you going?

(* Please scorn/chuckle at this purple prose.)

A rude reader

There are times when words swim away from each other as I read them, refusing to hold formation and carry the author’s intent. I have to set aside serious reading and pick up light fiction. This malfunctioning of my mind can plague me for long, tedious stretches, and is accompanied by physical lassitude. All I do, for hours and hours, is lay on my back and read.

(Once, an ignorant person said to  me, “I wish I had as much time to read as you do.” God bless them. May they never have first hand knowledge of this disorder or watch it overtake someone they love. )

When I feel that lethargy creeping up on me, I load up on fiction, usually historical romances. I don’t even have to expend the energy to get dressed and drive to the library. I can log onto my local e-library from home and download books to my Kindle. Or I can buy the latest volume from a favorite author through Amazon and be reading it within minutes. Instant gratification! (Not perhaps, my first choice, but I can’t have world peace or better health so I’ll just  be happy with what I get.) Unlimited, entertaining, easy-to-follow fiction is just a few clicks away. All praise to the writers toiling away in attics who make my existence tolerable.

I want only to pass my unproductive hours carried along by a pleasant story. (My husband asks me how I am. “Worthless,” I say, as I look up from the text of yet another bodice buster.) I don’t want to ever read a paragraph twice trying to understand it, or be sidetracked by poorly placed flashbacks. Humor is welcome, but please — no serious threats to the main character. It helps if the heroine is insulated from sordid toil and care by obscene wealth, but the author must never trip up and somehow remind me that obscene wealth is usually accumulated by someone else’s toil and suffering. Please, authors, don’t pop the bubble of my belief prematurely. It will disintegrate all on its own  after I finish the book.

When my primary “activity” is reading, my conversation suffers. My poor husband listens patiently while I outline plots of books he would never crack open in a million years. I don’t have much to say about the books I like. But when a book fails me, I can go on for awhile. Here are a couple that failed me.

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Winner of BEST HORROR NOVEL (August Derleth Award) at British Fantasy Awards 2016

The Girl from Rawblood

This novel was not for me. It’s not even a genre I usually enjoy. I downloaded it anyway because the blurb was intriguing and the action is rooted in the love of a house. I can identify with attachment to a family home and a particular place. Amazon rates the book 3.5 stars and the first reviewers are convincing in their praise. Maybe a well person would not have struggled, as I did, over the frequent time shifts. Maybe regular readers of the genre would not have been flummoxed by the circular plot, a chicken-and-egg quandary. Or how the terrible curse passed down through countless generations culminates (sort of) in one who is not actually a blood relation. Exactly how does that work?

Though there were some boring sections and at least one dry-as-dust character, over all the writing was masterful. There were descriptions of Italian and English countryside that almost had me smelling the seasons; intimate, historically accurate renderings of settings for three generations of the haunted family; and subtle moral parallels between vivisection and lobotomies. But I did not like this book. I only finished it to see if the author pulled the material together. I don’t think she did.

This book was not for me. Maybe it is for you.

The Indigo Girl

Amazon rates this book 4.5 stars. This book promised to be the story of a 16 year old girl

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A deeply-researched work of historical fiction, based on the untold story of Eliza Lucas, an extraordinary sixteen-year-old girl in Colonial-era South Carolina, whose actions were before their time.

left in charge of a small plantation when he father leaves. She never sees him again.

I only got a few pages into the novel before I deleted the book from my Kindle. I took irrational exception to the first person narrator repeatedly referring to her enslaved persons as “Negroes” and “Negro ladies” or “field hands” or “the driver,” all in tones of respect. Yet, in that first chapter, without a hint of irony, Eliza Lucas tells us that “A fantasy of mine . . .  (is). . . To be not owned as chattel by a father or one day a husband.”

In these times of bans on Mark Twain for using the N-word, how does an author stay true to a historical setting without making a reader cringe? How does an author present a slave owner as a sympathetic character?

It might be that Natasha Boyd worked both those tricks and I just didn’t stick with her long enough to find out. It looks like a good book. You read it and let me know.

 

The Revelation of Beatrice Darby

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How much courage does it take to be yourself? In a decade when good girls conform to strict expectations, Beatrice Darby is about to find out.

Now here’s a third, perfectly good book that I didn’t like. Like the other two, the cover appeals to me. This one promised to be an coming-of-age story. I thought the writing was clunky. I didn’t make it through thirty pages.

It has 5 stars on Amazon (but only 15 reviews).

Give it a try! You might like it.

 

Someone — a whole group of someones — worked hard to write, edit, and publish these books. I feel guilty when I don’t like a book. It is a rejection of someone’s hard work and therefore unkind. I don’t want to be unkind. So please — read these books and make up for my rudeness in rejecting them.

 

3 Ways to Get Over It!

We all have out buttons that beg to be pushed. Yours may be different than mine but they are probably equally unimportant in the wider scheme of things. Unless you are an evil dictator with the power of life and death over your cowering subjects, history will remain unaffected by your flare-up when somebody slams a door.

These last few weeks, due to chronic fatigue/fibromyalgia, I’ve been mostly out of commission. I look normal enough, I guess, if you overlook my horizontal posture. When I do stand up I usually lean against something. Sitting? my elbows are propped on the table and my hands hold up my head. Flat or upright, my brains are mush.

With so little energy to draw on, you’d assume I’d just let little things pass me by — that any buttons I have are obviously wired to dead batteries. Go ahead, you might think. Use ‘you and me’ instead of ‘you and I’ as the subject of a verb. Insert random apostrophes. This poor woman may have that coveted* degree in English but she’s in no shape to react!

And you would be right! I am powerless in my own life. Go ahead and push my buttons. I can’t get it together to lecture you on your transgressions so rub it in my face.

Yes, life goes on even when I can’t take part. To fill the hours, I read ten novels this week — eight historical romances, one YA fantasy, and one literary novel (the least enjoyable). — while wonderful things happened all around me. [Editor’s note: The writer does, in fact, go places and do things — just not as many of either as she would like. She’s waving around the proverbial half-empty glass here and spilling a good bit of it in the process.] Real life — engaged, active, vibrant — passes me by. In the meantime, the garden is weedy, the bank balance is a mystery, and the refrigerator is bare.

But if you think a debilitating illness is guaranteed to make you a more patient person, forget it. Struggling with such a condition can bring you to temporary state of acceptance. You might, briefly, step outside the pain and experience yourself as clear water flowing over and around rocks in a dappled stream bed. But this state will not last. At least, it never does for me.

Little things still get me.

After Quaker meeting [Ed: See? she does go places.] another Friend and I were bemoaning how others had come into the meeting room before the hour and, even though some were already settled, they whispered and laughed and walked around greeting others. Why don’t they know that meeting for worship begins as we center, not by watching the hands of the clock? Both of us confessed our disappointment to hear any Friend substitute the word “consensus” for  the word”unity,” the end result of our Quaker process. And too many who should know better refer to our meetings as “silent” instead of  “waiting worship.”

How spiritual is it to get irritated by misunderstandings of spiritual practice?  But without understanding, can there be full appreciation?

While I was taking a stranger on a tour of our meeting house, she asked me, “What do Quakers believe?”  I began with “Quakers believe there is that of God in everyone, that we are all equal in the eyes of God. We believe in continuing revelation, that if God ever spoke he is still speaking.”

Afterwards, a Friend asked why I didn’t just recite SPICE — Simplicity, Peace, Integrity, Community, and Equality? This never occurred to me. To me, the core of the Religious Society of Friends is how we arrive at what we believe. There is nothing simple about simplicity or peace or integrity or community or even equality. We have to know how to ask the right questions in the right spirit to put our beliefs into action. Quaker process is a gift to the world.

The irritation of a grain of sand can result in a pearl. Irritation, carefully examined, can guide us to the right questions. We can benefit when we allow ourselves to flow like water around the irritation, calmly taking it in. Quaker process is a way of setting aside ego and listening beyond words. It is not efficient. It’s painstaking and time consuming. To some of us of a certain temperament, it can be irritating. But that’s the price of unity.

Usually, though, there aren’t profound messages in the things that push our buttons. I get perturbed if I trip over my husbands size 13 boots or he doesn’t close a drawer all the way or forgets to turn out a light. He gets ticked if I run cold water in the sink when he’s washing dishes or I turn off a light he needs or I slam a door. We each try to avoid pushing each other’s buttons or over reacting when one of our own buttons gets pushed. That’s the price of getting along.

Some days, I watch myself getting ticked off about everything and snapping at everybody. This is a sign I’m falling into a bad place with the CFIDS/Fibromyalgia again. And then I have to spend most of the day apologizing. And that’s really irritating!

So the the heading of this piece is misleading. I don’t know 3 Ways To Get Over It — I don’t even know one. I get irritated by lots of things. I probably always will. Occasionally, my irritation is instructive. But most of the time, I just take it in stride and step over it.

How about you? How irritating is it that this piece contains no answers?

 

 

P.S. One suggestion: music. I’m listening to The Ecstatic Music of Alice Coltrane.

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*Obvious example of irony

Atheism: the Faith of My Father

In meeting for worship, the question was asked: “What does it mean to have a personal relationship with the Lord?” A previous message had claimed this “personal relationship with the Lord” and offered a definition of God as “Love and Light, Good and Right, Wisdom, Knowledge and Compassion.”

I learned faith from my father, a birth-right Quaker and a devout atheist. Daddy was an equal-opportunity anti-God fanatic. With little provocation, he delivered passionate sermons aimed at converting believers to Reason and Logic. He was evangelical — a missionary among the washed hordes of Christians in semi-rural Ohio. Like all True Believers, my father suffered for his faith. In our little town, people like Daddy who openly, loudly — even brazenly — didn’t attend church were looked upon with suspicion, to say the least.

He tried to raise me as a Quaker without God and hundreds of miles from any Friends’ meeting house. Social justice, the equality of persons, the evils of war — he lectured me on these topics. Countless times, as the sole member of his congregation, I listened attentively as he thundered on in rolling tones about the curse of ignorance that breeds superstition, the hypocrisy of worshipping on cushioned pews beneath stained glass windows instead of feeding the hungry, the impossibility of the virgin birth and the resurrection, the contradictions of the bible, the pagan antecedents of Christian holidays, and so forth and so on, ad nauseum.

I soaked up his every word. I believed. God was an invention of men. Religion was anti-science. If something can’t be proved by scientific, objective measures, it doesn’t exist. Daddy’s worldview wove a thick cloak of superiority about him while others stood naked and exposed in their ignorance.

But now I’m a Quaker, and I consider myself Christian within that tradition.

I didn’t abandon the faith of my father overnight. Mine was a gradual turn about. Even while I was still enthralled by his pronouncements, I was reading heretic texts like The Sleeping Prophet and devouring “non-fiction” on mysteries like Big Foot and UFO’s.  (Decades later we moved to Virginia Beach and I came to know people who knew Edgar Cayce and offered more stories of his second sight.) My friends and I were fascinated with Ouija boards and ghosts.

Even in junior high, the idea of reincarnation appealed to me. The way Cayce explained it, reincarnation sounded fair, and we all want the world to be fair, right? Maybe my life this time is an easy one because I starved to death in the last one. Of course, reincarnation can be used to enforce a caste system and justify inequality. In that way, it’s no different than a religion to keep people under the thumb of the King or in the rifle-sight of a tribal chieftain because obedience and piety are rewarded in the after life so keep your mouth shut and do what you’re told.

Though I liked the idea of reincarnation, it wasn’t enough to undermine my faith in Fundamentalist Atheism. Even from where I stood — a place of relative privilege and comfort — it was obvious any God worth worshipping wouldn’t allow people to suffer like lots of them obviously were. If there was a God in charge of this world and all its hunger, sickness, and premature death, he wasn’t a god I wanted anything to do with anyway.

About mid-way through college, five months pregnant and not married (this was a big no-no back in 1970), I was sitting on my dorm bed at college idly considering a jump from the window and a plunge to the asphalt three stories below. (This sort of thinking I learned from my mother.) Then I heard that still small voice: You don’t have to do that. Things will be difficult for awhile but everything will be all right in the end.

I heard the voice. I never doubted the words. It was enough to keep me going. I didn’t bother to weigh the silent voice on any scientific scales. I just accepted it and moved on.

Three years later, I returned to campus with my daughter to finish my degree. And I met a really nice young man. And I heard that voice again: This is the man you are supposed to marry but you’ll never have any money.” This was an Oh Shit! moment for me, because, in my (still) atheist worldview, money was the only security. The more money the more security.

So I set aside my need for money and that kind of security and married that nice young man. We never were hungry or homeless but we had some lean years and some hard years. I never doubted that we were supposed to be together — I’d been told — and we came through those years a out on the other side.

But in spite of these and other mystical life-changing moments, abandoning the faith of my father was a gradual process. My husband had been raised in a strict Baptist Church and was in no hurry to ever join another one. Years went by and were we unchurched, but, soon after we moved to a town with a Quaker meeting, we began attending.

I suspect anyone who’s been gifted with trustworthy directions and guidance from a source that defies rational explanation longs for frequent communication from that source. In my life, that voice has been crucial and rare. The best substitute I’ve discovered is to fill my life with good people and learn from their examples. And in that little Quaker meeting we first joined, there were people well worth emulating.

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When I told my father I was attending a Friends meeting, his first question was “Race Street or Arch Street?” I assured him we’d joined a Hicksite congregation and he seemed, for an atheist, oddly satisfied. He took great pride in his Quaker forebears and cousins in spite of their irrational beliefs.

Once Daddy got over being pleased that I’d joined the Religious Society of Friends — that his daughter had come into the very fold he’d abandoned — he felt compelled to argue with me about the existence of God — God anywhere, in any form. Since you can’t prove God exists, Daddy argued, God does not exist.

[Oddly enough, I have a disease — CFIDS/ME — that cannot be confirmed with a laboratory test or x-ray. For years, doctors used that same argument against people like me: We can’t prove you’re sick so you are not sick. In spite of their sound reasoning, I am sick. Medical science is catching up with my experience.]

I came back at my father with arguments for the existence of music and love, neither of which have scientific explanations. (Or so I said at the time. I’m wouldn’t make such pronouncements today.)

My current and fluctuating understanding of God is whatever It Is that binds us, makes us human — like the force that holds bees to a hive, working together for the greater good. It’s hard for me to see any sense in altruism without God. If there’s no meaning beyond one’s own individual needs and pleasures, what’s wrong with doing whatever it takes to achieve whatever’s best for yourself? Ayn Rand, anyone?

Do I have a personal relationship with the Lord? Well, it’s an on-again, off-again kind of thing. I don’t always stay in touch. But here’s what faith means to me: an ability to accept uncertainly.

My father and other fundamentalist atheists I’ve met — the brand of atheist compelled to harangue us ignorant church-goers — have a great deal in common with religious fundamentalists: the drive to be RIGHT! The basic flaw in atheism is the claim of certainty. To me, agnosticism seems more consistent with reason.

The idea that something can only exist if human science confirms it’s existence is a strange one. It’s like claiming the Grand Canyon didn’t exist until Joseph Ives sent his Report upon the Colorado River of the West; Explored 1857 and 1858 to Washington, D.C.

This idea also overlooks the expansion of human knowledge, the way new discoveries overturn old understandings.

I can’t explain what I believe and I can’t justify it to a non-believer. That’s fine with me. I don’t care if I’m wrong and I can live with uncertainly.

Isn’t that part of what it is to be human?

 

 

 

Invisible Illness

Take this moment right now — seriously, take it!The skies are lowering and my head is closing down. Yes, I can still make the bed and sort-wash-switch-dry-fold-put away the laundry and I ought to be grateful for that. And a friend called this morning and we laughed and the kids stopped by and they are wonderful and my husband and the dog didn’t ride off into the sunset in his pick-up BUT I had plans for today that required thinking and my brain isn’t working well enough to think and I am not grateful!

If my whole life were like today, I’d have a hard time convincing myself to stick around. To do so, I’d have to graciously accept that every day would be just like this one: maybe two productive hours in the morning for everything that requires any effort or initiative — planning meals, figuring out the bills, answering emails, making phone calls, etc. — all the usual responsibilities we all have of being who we are and living where we do. Then my brains depleted. Voluntary mental excursions — writing, leaving the house, practicing piano, answering letters — get shoved to the side where they jealously glower at me as my hours are  consumed by romance novels and Facebook scrolling.

Terrible pain and constant nausea are, nowadays, rare for me, and I am grateful for that. A touch of vertigo, some localized discomfort — you’d think I had nothing to complain about. But I want to Do Things — fun things — and I can’t. Sometimes it gets me down.

I listened to Ted Hour program on NPR the other afternoon, and it just made me feel worse. (And her’s the entire Ted Talk by Jennifer Brea.)

Especially during turbulent weather, I can expect to experience strings of days where my life seems suspended. I wait out my allotted hours, unable to focus, or really, even _1295592399317remember what I’m trying to do. I should expect this stuck-in-amber, outside-my-own-life state, but I never do. I always begin the day believing that today, this is the day the Lord hath given and I can do all the things I couldn’t do yesterday.

And, many days, that’s true. And sometimes those good days are in a long string, too.

I know more about this illness that dogs me than I did at the beginning of this year. This is because my daughter asked me to accompany her on a car trip to clinic specializing in chronic fatigue/fibromyalgia. This clinic requires all new patients to bring another person with them for their initial consultation.

My daughter drove to our house and spent the night. We left the next morning for Charlotte, North Carolina, and, in the late afternoon, found our Airbnb in a well-maintained neighborhood with lots of trees and birds.

Our Airbnb suite was over a newly constructed garage and workspace, up beige carpeted, interior stairs. A sign next to a chair at the bottom of the steps instructed us to leave our shoes by the door. We hauled our overnight cases and insulated cold packs (and my knitting) up the steps in our stocking feet. There was a big room with a kitchenette, TV and sofas, futon and windowsills and table and chairs, and a roomy bathroom and a bedroom, also with lots of natural light. The furnishings, too, seemed to be newer and chosen for inoffensive good taste but there were enough personal touches to make it a welcoming space. My daughter admired the round dining table, it’s glass top supported by the spreading branches of the metal tree that formed the table’s central column.

We made ourselves at home for the evening. We had hauled all our food with us. We are both on gluten-free and sugar-deprived diets and weren’t going to try to find a restaurant in this strange city. All our energy was reserved for visiting the doctor. We heated up our meals, read the books we’d brought, and went to bed.

The next morning, the route to the clinic took us through cute shopping areas, lovely neighborhoods, and multiple medical complexes, interspersed with one massive church after another. These astounding, huge buildings housed mainstream Protestant congregations, Catholics, and those self-labled “non-denominational” Christians (or “Christian factories,” as one long-ago acquaintance called them). The biggest church featured multiple entrances through the extensive lawns and satellite parking with numbered signs that reminded me of of the parking lots at the Richmond International Raceway.

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Calvary seats 5,000 worshipers

Charlotte, North Carolina, probably boasts many attractions. However, our sight-seeing was limited to driving by these astonishing churches. We did go shopping at CVS in one of Charlotte’s up-scale shopping malls. My daughter filled a prescription and I bought a paperback. It was a nice CVS, but we have those here at home, too.

I remained in the examination room with my daughter for the initial consultation. The doctor walked in carrying a file with all the medical records my daughter had submitted ahead of time, as requested, as well as the numerous additional forms the clinic required. She looked up briefly, before taking a seat at the computer. “Were the lights on when you came into this room?” she asked.

“Yes,” my daughter said.

“Did you ask the nurse to turn them off?”

“That was me,” I said. Overhead lights usually irritate me. They don’t bother my daughter. Light and noise sensitivity, as we were shortly to learn, are just two of the many symptoms, conditions, and sensitivities that may be fellow travelers with a case of CFIDS.

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The doctor had many additional questions for her patient, of course. My only useful contribution was to prod my daughter into a fuller description of her life beyond just the demands of her job.

During the doctor’s lengthy and detailed explanation of chronic fatigue syndrome, I heard several new things. I learned that crippling pain, like I experienced at the onset of my own illness, is not characteristic of CFIDS. Apparently I’ve had fibromyalgia from the beginning. I didn’t just develop it a year or so ago when I (mistakenly) thought I had shingles with the rash.

The doctor displayed a chart with a zig-zag to showed the course of CFIDS: steeply plunging and ascending in the first years and eventually becoming less steep but still zigging and zagging, up and down, but less deep and less high. My own gradual improvement over the years had lulled me into hoping I might someday outlive the disease. Nope. That is not in the cards.

I zoned out before the doctor finished her long explanation of the role of Vitamin D deficiency  in CFIDS. (Maybe she wasn’t even talking about Vitamin D?) My daughter seemed to follow it better than I did, and just in case she didn’t, the doctor gave her a three-ring binder and a DVD so she could review everything on her own, at her own pace. Obviously, a lot of her patients wouldn’t be able to grasp all of the information at one sitting.

Before this doctor’s visit, when I heard that doctors were recommending aerobic exercise for people with chronic fatigue, it made me want to scream. (I didn’t actually scream, of course. I didn’t have the energy.) But the aerobic exercise this doctor was recommending was only five minutes of walking at a time! Plus gentle stretching exercises.

I was not surprised to find that CFIDS can rob a person of 30 IQ points. Thick brain fog makes life difficult.

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The doctor stressed that a good night’s sleep is vital. Insomnia comes with the condition and several night of insomnia in a row, I know from experience, worsens other symptoms. Hence, the sleeping pills.

One welcome piece of information is that only 10-15% of children of patients also succumb to CFIDS, and almost all of them are girls. This relieved my anxiety for my youngest son. He is now about the same age as my daughter and myself each were when we were struck down with the disease.

I remained in the waiting room with my Kindle while my daughter underwent computer tests, coordination tests, the treadmill and a tilt-table. She passed out on the tilt-table. So I proved essential after all. I drove us back to the Airbnb. (Other patient reactions to these tests have included falling asleep, marked confusion, and vomiting.)

We spent another comfortable and uneventful night over the garage (our rating as guests? “quiet and nice”), and packed out in the morning before returning to the clinic where my daughter got back on the treadmill for one last test.

Then we headed north, out of the Land of Mammoth Churches, and back home.

That was some weeks ago. My daughter quit her job and is following the advice the doctor tailored just for her. She rests flat on her back for at least five minutes of each hour (sometimes it’s the whole hour) even when it is inconvenient or potentially embarrassing. She has a handicap parking permit. She now owns a wheelchair. She paces herself. Etc.

When she calls her voice is brighter and quicker than I’ve heard it in years. She’s adjusting to a changed life and changed expectations.

Would you be surprised that I am glad my daughter has a wheelchair? Well, I am glad. In a wheelchair she toured the Museum of Natural History with her brother and his young family.  All that walking through the museum would have exhausted her. She would have crashed and lost a week to recovering. Instead, she wasn’t on her feet and she got to carry her niece on her lap.

Going to Charlotte, North Carolina, was well worth the effort it took.

You might be wondering, if I’m in such a bad place today how did I put this blog post together?

I took a three days.

And now I am grateful. I’m grateful I finished this post!

 

 

* apologies to Henny Youngman

 

Premature Eruption

I appreciate a well written blurb. It’s an art form I understand and admire. It takes skill to compose a terse but compelling summation of a novel. A good blurb dives right into the emotional heart of the book, plunging into the throbbing core of the plot. It grabs you by the eye-balls and says READ ME!

The blurbs on my Kindle screen, on the other hand, are usually bad. These blurbs and the corresponding book cover appear on the screen before I swipe the screen to read my own book. The ad is meant to entice me to buy the book. But, rightly or wrongly, when a blurb is bad, I assume the book is bad, too: probably a self-published novel that has never passed through a critique group, let alone fallen under the eyes of an editor. To be fair, a Kindle screen blurb — at twenty-five words or less —  has to be the devil to concoct. (And I’ve never tried to do it.)

Here’s a bad blurb from my Kindle screen:

A baby vanishes from the womb without a trace. A fossil upends two centuries of scientific theory. A prehistoric virus kills thousands within days.

Would you buy this book? I didn’t. Those three sentences just make me think of that Sesame Street song “One of These Things (is not like the others).” Except I can’t pick out which thing doesn’t belong.

Here’s another blurb:

20th Centry Fox developing for film. An award-winning story of one family’s struggle to survive a massive terrorist attack that destroys America.

This is better. But the hype at the front is off-putting. Do I believe it? Do I care? Does it make me want to read the book? Not really. And the second sentence is the plot of every other contemporary dystopian novel.

Gabriel Miller swept into my life like a storm. There’s one way to save our house, one thing I have left of value. My body.

We are not amused. If there’s a connection between the first sentence and the second, you wouldn’t know it from this blurb. And would I trust an author who uses a period instead of the colon I am expecting? But at least this blurb pricks my curiosity. Is the body in question valuable for organ harvesting? Blood plasma sales? Scientific experiments? (My curiosity wasn’t strong enough that I bought the book.)

I think the blurb below has been on my Kindle since I bought it. Maybe absence would make the heart grow fonder because familiarly, in this case, has definitely bred contempt.

3 massacres, 2 detectives, 1 writer and 0 answers. A dark thriller you can’t put down with a twist you won’t see coming.

Plot? Hero? Nada. I didn’t buy this one either.

Here’s the plot of the books I buy over and over, in every permutation, as long as the setting is historical British Isles and there’s a Duke somewhere nearby.

Two people meet and instantly hate each other. Through misunderstandings and mishaps, desire flares between them. They succumb. They marry. The end.

Predictable? Yes. So why would I read such a predictable book and not, say, a novel like Ken Follett’s Eye of the Needle (which I found in our Little Free Library):

“An absolutely terrific thriller, so pulse-pounding, so ingenious in its plotting, and so frighteningly realistic that you simply cannot stop reading.”

And ” . . . leaves the reader suspended as the book speeds to a breathless finale!”

I don’t read thrillers. I don’t read fiction that scares me, shocks me, keeps me in suspense, or keeps me awake. No rapes or mutilations or blood dripping through the floor.

I do read fiction other than bodice busters but it’s always fiction that entertains, transports, intrigues — unchallenging fiction to effortlessly pass the hours when chronic fatigue/fibromyalgia has me down and I’m not up for anything else. I read fiction to escape from the things that scare me in the real world.

And it’s harder every day to ignore those scary things.

For example: It’s only February and my asparagus is up more than two weeks earlier than we’ve ever seen it. And the bluebirds were fighting the sparrows for the birdhouses in the yard two weeks earlier than last year. (The bluebirds lost again.) The sparrows are sitting on eggs already, which is something I don’t keep track of from year-to-year but I’m pretty sure I’ve never seen them sitting on eggs in February.

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Sparrows nesting behind blue walls.

Very early this month,out on the screened porch, about twenty of the black swallowtail chrysalises opened and the butterflies came out, only to die trapped in the cheesecloth-covered mason jars. Three or four of the insects died still crawling out of their winter homes, probably felled by the sudden return of cold weather. I had intended to remove the cheesecloth in time for the butterflies to fly away and find flowers to feed on. Who was looking for butterflies in early February? Not me.

Two butterflies were still alive. I placed them in a garden bed, on top of the foul-smellng purple deadnettle, and hoped these early blooms appealed. I hope the butterflies enjoyed a few days before winter temperatures caught them.

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Jar of black swallowtails with perfect wings.

There were a dozen more chrysalises intact. Those are now in the refrigerator until I am more confident of the weather. This February looks like spring and the birds and peepers sound like spring. But it makes me uneasy.

It makes me uneasy in the same way finding caterpillars on the parsley made me uneasy last November, when I brought them inside to save them from the frost. It makes me scared in the same way watching video of the calving of an iceberg bigger than Manhattan scares me.

The world I know has changed. It continues to change in unpredictable ways.

I read non-fiction. I read  newspapers and informative magazine articles. I attend forums and listen to podcasts.  I can find my cheeks wet with tears during a discussion of health delivery systems for impoverished children. Real life offers more than enough to make my pulse pound, my blood boil, and my heart sore. Real life is more than enough suspense for me.

The seas rise and powerful tornadoes scour the land as dangerous shifts in climate threaten the lives of all earth’s inhabitants. An extraordinary tale of greed and ruthlessness, of bravery and sacrifice — with a heart-stopping climax of unforgettable power!*

I like the blurbs for the thrillers. I just don’t enjoy the actual books.

 

 

*This blurb is based on rave reviews of Eye of the Needle.

 

 

 

 

 

 

Hair today, gone tomorrow?

So I used to have this GREAT hair cut!

Back in Virginia Beach, my neighbor Dee was a genius at cutting hair and she came to my house and she only charged $10. For someone like me, with a chronic illness and little energy, this was great!  Even without her cowboy boots, Dee stood over six feet tall. She had long red hair halfway down her back. I’d sit on the front porch to wait for her. She was easy to see striding down the sidewalk.

Sometimes she’d come and just cut my hair. Other times I’d gather a small group of family and friends and we’d all get haircuts. Dee was an artist. When Dee was finished cutting your hair, it looked super. My hair cut incited envy every place I carried it. Perfect strangers would stop me wherever I went and ask me who cut my hair. Dee was THAT good.

So, all right, the hair cut experience might include strange conversation about imminent danger to the immortal souls of Pat Robertson and other regulars on the 700 Club. According to Dee, there were people out there in the clutches of Satan and they knew she was working to overthrow them and they knew where she lived so she had to take special precautions so they wouldn’t come after her. Which might be why she moved and left no forwarding address or telephone number.

Without Dee, I went longer than usual without a haircut. Then I moved here to Richmond and I went even longer. Dee would cut a swing bob for me that could go six weeks without a trim. But it was several more than six weeks and I had to do something.

So I walk into one of these chain shops with multiple chairs and no appointment required, right? I figure the beautician can look at the hair cut I’ve got and just cut it shorter, right?
HA! And I can look at the Mona Lisa and just paint it larger, too!

So I walk out with a similar haircut to what I had, but somehow without the pizzaz. A swing bob missing the swing. Nice and neat and BORING.

Two months later, I try another chain. I know, I know — this fits that classic definition of insanity — “trying the same thing over and over and expecting different results” — but I was so busy painting walls, planting flowers, reading street maps to find the post office, etc. that I hadn’t found a place in the brain under my hair cut to assign the task of finding another true artist to cut the hair cut.

I arm myself with a magazine photo of a woman with (what looks to me) a simple hair cut. The beautician says Sure, she can do that for me because I have very fine, straight hair just like in the photo. She cuts away. Wet, it looks like she’s pretty much cut what I ‘d hoped for — but then — completely missing the point of this haircut — she spritzs my hair with volumnizing gel and blow dries it into a style. I am totally puzzled but figure this will wash out.

Once home, it’s obvious she must have put a bowl over my head when I wasn’t looking and cut around it. The hair persists in looking like this even after I wash the flowery smelling gel out.

So I took the scissors into my own hands. My hair came out looking like a different photo — my great grandmother in 1932. Sadly, my days of turning heads were over.

So, years ago, I’ve settled into what is essentially a non-decision that takes no energy at all: I just let the stuff grow. I trim my bangs. If I still had a waist, my hair would be waist length.

But if you see Dee coming down your sidewalk, head and shoulders above the crowd, long red hair swinging across the back of her denim jacket — grab her while you can!