“Best Christmas in years”

J’s experience of the holiday of loving and giving was one of manipulating and threatening for a long time. He doesn’t say that, of course; it takes detective work to glean the data from the clues he drops. He doesn’t reflect on the past, but it does tend to cast shadows into his present.

After last year, when I’d kept the holiday out of our home and opened my gifts in private, he said — to my surprise — that he’d like maybe a little bit of decoration and festivity next year. Not the commercial garbage, just a little light.

This year, I put redwood swags tied with burlap bows against the fence and draped a green swag of redwood across the trunk outside.

I picked up redwood cones, which are tiny and exquisite. I dipped them in penetrating epoxy to make them sturdy and non-porous. Then I painted the tips in copper or gold paint, and where I had twin cones on a single twig, I made one of each.
redwood-cones_decorated
On Christmas Eve, I made lamb kofta that turned out better than any I’ve had in years. It was the first solid food J had had in almost 2 weeks, and he ate half of it in a few hours. It went down well.

We’d gotten new flannel sheets. I dressed the bed in a brighter, perkier version of Black Watch plaid, fresh and soft and soothing.

That was enough preparation for me, clobbered by the worst humdinger of a cold I’ve had in years.

Then Christmas day dawned, sparklingly bright and crisp. Once he’d had coffee and I’d had tea, I made blueberry pancakes (recipe below) which he told me were the best I’d ever made.

We noodled around the house and yard all day, warm and content. I opened my gifts in the living room (he’d gotten and opened his earlier.)

I made a leopard-print minkee shawl for his dog, who has been swanning around ever since, clearly feeling as breathtakingly stylish as a modern Grace Kelly.
dog_shonie_elegant
The satellite TV was out, but I figured out how to connect my computer to the new TV and stream Netflix on our gorgeous HD screen.

Like many people, he has deep scars from mainstream religion. When he started climbing down that rabbit hole, I told him the history of the Christmas holiday, which dates back thousands of years in Europe. People collected under the largest available roof for the armpit of winter, keeping warm and entertaining each other, and those who had more shared with those who had less. Everyone got through better together than they would have alone, and familial and social bonds were reconfirmed ahead of another year of hard, often lonely labor. When the Church moved into Europe, they moved the celebration of their Savior’s birth from springtime to a few days after Yule, because the good ones loved the season of warmth and sharing and the scheming ones could spot a good opportunity. (I told him that the 3-day margin gave people time to sober up from the Solstice bonfires and clean up in time for Church.)

That isn’t about faith, just about historical data. Belief creates its own reality, and I respectfully support everyone’s right to choose and structure their own beliefs. All honest forms of worship make the world better, in my view. Amen.

The history lesson took the sting out of Christmas, and the last detail made him laugh.

After a week of prostration with that awful cold, he actually got up and washed all the dishes. The kitchen was sparkling by bedtime. It’s the little things that really tell you.

From about dusk on, J kept saying, “This is the best Christmas I’ve had in years.”

Something tells me they’ll get even better.

Recipes

These are Isy Recipes, so they don’t have too many ingredients or too many steps, and every ingredient has something fabulously useful about it.

Pain-cutting Pancakes

2 bananas, mashed
2 eggs, beaten
1/4 cup flaxseed, ground
1/4 coarse raw sugar
1/4 package Boreal blueberries

Beat everything together and let it sit while the pan heats to medium heat or slightly lower. These cook low and slow, not like flour pancakes.

Pour the oil off the top of your almond butter into the pan. If you don’t have that, use safflower oil. Either one makes a wonderful crispy edge.

Spoon the batter into the pan about 3-3.5 inches (5-6 cm) across and up to 1/4 inch (.75 cm) thick. If you’re using the almond oil, they may fizzle and make white foam with a lovely scent. Cover the pan. It takes at least 5-7 minutes for them to cook well enough to flip in one piece. Cook the other side for slightly less time. Serve with Kerrygold butter and non-osmosed maple syrup, if possible 🙂

Kofta Kebab

1 pound (2.2 kg) ground lamb
2 eggs
~2 tsp natural mustard
2 handfuls of finely chopped spinach (I couldn’t find the parsley)
Spices:
Lots of ground cumin
black pepper
1 tablespoon (scant palmful) basil
2-3 tablespoons parsley (I found it)

Mix everything well with your clean hands. Heat 1/4 inch (.5 cm) of grapeseed or olive oil in a frying pan over medium high heat, hot but not smoking. As the oil heats, take small handfuls of meat and squish them into a lozenge shape, laying them out on a plate or board. Drop them into the pan, one batch at a time. If you made the lozenge shape rolly-polly enough, you can roll the kebabs over in the pan. Only turn them once; more often and the meat gets tough.

When they are crispy gorgeous dark amber, scoop them out and lay them on brown paper to drain. Eat with your fingers if you can’t wait, like me, or with ketchup if you’re a total yahoo, like J.

Lamb has lots of zinc, which is good for fighting off viral infections.

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Happy Holidays — all of them

Whatever you celebrate, may this season be peaceful, fruitful, loving, and kind to you.

May all your pain lift. May all your wounds heal. May all your illnesses get completely better.

May your weaknesses become secret strengths, ready to your hands. May your strengths bring nothing but benefits and joy to you and the world around you.

May those you love the most, appreciate you just the way you are. May those who love you the most, be recognized — and valued — just the way they are.

May you have all that you really need. May it truly gladden you.

Most importantly, when you can’t take care of yourselves, take care of each other. It generally works.

Happy Everything!
glee

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Ethan, in memoriam

I tried to find a song for Ethan, who did love music, but it wasn’t working. I’m not much of a poet, frankly, but it was the only thing I could do.

Here is Ethan’s poem from me.


We did the impossible quietly
Getting the boat into harbor
and keeping it safe through the night

Tight hugs abeam unstable piers
My little brother, so big

When I thought I'd die of weakness
You showed me my strength
And, smiling, would not accept less

Tight hugs killing off mortal fears
My little brother, so big

Long nights talking and talking
'til your gyroscope turned and you looked
at the first stains of dawn on the water

Tight hugs at the end of the tears
My little brother, so big

When you turned searching eyes upon me
For the integrity that rooted your heart
You had the grace to thank me

Tight hugs through difficult years
My little brother, so big

You were so impossibly larger than life
I wrote you into a comedy of death
And you were the best thing in it.

I miss your hugs, my dear.

It’s really too bad (a bit of staggering English understatement, there.) He had found the right life and the right wife, and I was beginning to think I’d eventually meet his children.

I hope he’s free of the demons that hounded him so mercilessly. Wherever he is, I expect he’s raising Hell — kicking righteous butt and making the world fall in love with him, and doing both with equal, unquenchable vigor.

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TV, inappropriate sensory stimulation, and when enough is enough

TV flickers at a rate guaranteed to put the higher cognitive functions to sleep. LINK It is literally, and specifically, hypnotic. Anyone surprised?

Some people like that, although I don’t. Some people need that, at least in some measure.

Every waking hour when you’re at home? There’s a problem there, even when you don’t share a house with someone with longstanding CRPS.

I learned to hear the words behind the words when I was an ER nurse. I had to be able to know the truth from the lies to the self, the lies to others, and the lies to the universe. I had to know when people didn’t care if they were lying or not.

Our brains can split the channels of verbal communication, so that the literal meaning of the words goes into our brains via one logical branch, the subtext and connotations of those words go into another, the emotional load the person is trying to convey goes into a branch that analyzes conscious manipulation, and the emotional load the speaker feels about what they’re saying — or if they’re even paying attention to it — goes in via a subtler branch. I learned to parse it quite specifically.

Some people thought I was reading their minds. I was just hearing their speech.

Now you know why, much as I loathe and despise the modern Democratic party, my outraged contempt for the modern GOP (and all its wacky little offshoots) is even greater. The sound of all those relentless, delusional lies is unbearable to me.

My mostly lovely partner, J, has TV again for the first time in a couple of years. Like the Scot that he isn’t, he wants to get the most out of his monthly investment — or that’s his excuse. In any case, he has perfected the most effortless way to get me out of the house: keep the TV on.

Every.
Waking.
Hour.

There are only so many times you can argue about the same thing before you realize you’re utterly screwed, and the most important person in your life is just going to torture you until something breaks.

No wonder I can’t get any work done. It’s too darn cold to be outside for long, so I have no choice but to have my brain beaten into a pulp day after day.

I can’t get the message through to him about what it does to me. He thinks I’m being dramatic or controlling, “because that’s how women are.” (Yeah. I know. Living with someone with CRPS is hard, and he uses the “woman” excuse to think about something besides the fact that this is such a hellacious disease. Moving right along…)

It’s not how *I* am. I’m a weird woman, I readily admit it, but I am not interested in interfering in someone else’s self-medication, as long as it does no harm to others.

That’s a major freaking caveat.

My ears have been ringing for days now. Early hearing loss runs in my father’s family, and the absolutely relentless natter of evasions, irresponsibility, bad acting and recreational conflict are doing significant damage to my hearing mechanisms, not to mention what’s left of my capacity for reason.

And J wonders why I’m getting more unhappy and short-tempered.

Dad protected his hearing and commented on his symptoms and how he treated them. He swore off music and TV for days when his ears started ringing. Moreover, as heads of the family, he and my mother limited TV time to two hours a day.

Lucky cuss.

When J and I leave this area, he thinks we’re going to live in a trailer or something as we wander around the country. While 90% of that is a fine idea (as long as I’m strong enough), we are definitely going to have to solve the TV problem. Personally, I’m preparing to “accidentally” drop something heavy on all the TVs in the vicinity, and apologetically give him a small laptop set that doesn’t even have speakers, just a headphone jack.

I think I could just about live with that.

P.S. It’s worth noting that, every time I write a post about J, I read it to him before posting. I don’t sneak around behind his back at all.

His comment halfway through: “Okay, I’m prepared to split this 50:50.”
His comment at the end: “Okay, I’m just off to go kill myself.”

I think it might have finally penetrated.

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Home

Too big a subject for one blog post, but I’ll try. If this gets poetical, there’s a reason.

The home of my youth, Egypt in the mid-to-late ’70s, (alternate link: http://jldtifft.com/, click Galleries, click Search, enter “Egypt”) no longer exists. The generous and opening society, the cobwebby clutter of the Cairo Museum, the beautiful horses that were cheap to ride, the empty vastness of the Red Sea shores with the impossibly deep nighttime sky,

astrono_galaxies_hubble
Image from NASA/Hubble

even the occasional cockroach in the sodas… Shot down, cleaned up, built over. So it goes. One day, I might adjust to its absence.

I consider New England my home — one very special part, roughly between Mount Greylock and the Quabbin. When I had to move away, the first time, I remember feeling lightheaded as I drove across the border into New York, and spending the next hour counting and re-counting my limbs. I was sure one of them was missing. The feeling of dislocation, in its most essential sense, was that powerful.

When I moved back, coming the southern route, I remember my cat (originally a native of Egypt) waking from her long slumber as we drove through the last few miles of Connecticut and into southern Massachusetts. She had a lot to say about it, which amused the other drivers. When we got onto the Mohawk Trail and headed uphill into the Berkshires, her white fur glowed (I never found out how she did that) and she climbed up to the dash, where she could smell the air coming in through the vents. She inhaled it with complete attention, entranced, ecstatic.

I completely agreed.

To me, the endless green, the snuggling hills, the way the trees mingle with everything around them, the way the water bends and bounces over the sparkling stones, in that particular region, is the most beautiful on earth.

The airy, daffy grace of the black tailed deer, the sweetly sardonic canniness of the foxes, the fluffy explosiveness of the rabbits – not quite like anywhere else.

The white granite begot my bones. The ubiquitous brooks are the flow in my veins.

water_swimminghole-1
Image mine. Share-alike attribution license from Creative Commons.

The turning of the seasons could ignite poetry in the driest of souls: from the full-throated glorious summer, with birds shrieking their fool heads off and the hayfields looking like fat emerald velvet scattered with amethyst heads of clover; to the outrageous glorying riot of autumn; to those rare days in winter when the first light sets every tree, covered in a skin of ice, to blazing like fountains of diamonds; to that astonishing time when the air touches your mouth differently, you notice the first puddles of dirt showing through the snow, the very hint of a crocus nose pokes through, and winter isn’t over yet but the rise of spring pulls you up by the heartstrings.

A friend of mine sent me maple syrup she’d collected and boiled from her own trees.

maple_syrup_tap

Every now and then, I take one taste, and that’s all I need: I can smell it, hear it, feel it — if I close my eyes, I can see it too.

I love the un-fussiness of the people. Outsiders consider New Englanders reserved, but it’s more that they’re judicious. If it were obvious how utterly decent they are, nobody would ever leave them alone.

A visitor made this plain to me. A crusty old fart, whose family name was on half the landmarks in the area, had just plowed my driveway with heavy equipment. Knowing from my winter of splitting and hauling cordwood what it takes to do winter work, I invited him in for fresh-ground coffee. He hesitated until I said it was fresh-ground (I never drank much coffee, and it either had to be good coffee or a bitter day for me to enjoy it, so I made sure mine was good.) He came in, stamped the snow off his boots outside and inside, and shut the door as he unzipped his enormous down jacket, which was itself stiff with cold.

Underneath the crusty outer layer of jacket, the down was puffy and warm, opening out in billows behind the zipper. As the coat opened, so did his face. His voice warmed up and he reached gratefully for the coffee, alight with delight and fellow-feeling.

That’s New Englanders all over. Super crusty and maybe chilly on the outside; underneath, all soft, gentle, slightly fluffy, and ever so warm. Once a New Englander accepts you into the inner circle, you’re there for life.

It’s not bad. Not bad at all.

Years ago, the aggressively shortening days of winter made half the year pure hell for me. No amount of expensive lighting could compensate. With CRPS on top of that, the cold is unbearable and the extra work of winter is beyond me – and I used to love splitting wood, and even shoveling snow. It was the second-best way to get warm.

Snow_shovel
Image from Wikimedia Commons

I’m more or less trapped on the other side of the continent. I’ve given up on long trips until I’m strong enough to recover quickly; the current recovery time is 10 days, which doesn’t leave much time for visiting.

Nevertheless, and despite the fact that October’s shortening days are impossible there for me, there are times when I miss being home.

I’m thinking ahead to finding a place to settle. Where I am now is temporary, and for a very specific purpose (more on that later.) I’ve had a decade of transience, with much travel and frequent moves. I have other things to do, and I want a home to do them from.

I’ve had two excellent, intriguing, beautiful and fulfilling homes in my life. That makes me very lucky. Nevertheless, before too long, I’ll be looking for one more.

Johann_Georg_Grimm_1886,_Fazenda_em_Paraíba_do_Sul

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Preparing for winter in “Settler summer”

I’m too conscientious a historian to call it Indian summer, when the normally pleasant California shoulder season turns murderously hot.

I’m cleaning up, getting rid of clothes that were old a year ago and replacing them, and canning, dehydrating and even preserving food. I feel driven to, although it’s a lot of work and not necessarily CRPS-friendly tasks.

J cannot fathom why I’d be cooking in this heat, let alone making heavy, hearty food like bacon mash.

He’s cutting firewood instead.

Yeah, I know. We’re both kinda special.
matchgrins-horsenwoman_decamps-pauline_4blog
I have 4 blog posts almost ready to go up, but I keep making the mistake of starting my online time at social media. Within minutes, my attention is shot. I can’t finish a blog. I can barely finish a sentence.
me_wrysmile
This is the first vaguely functional day I’ve had after a spectacularly ghastly mast-cell-mediated flare.

Silly me, I ran out of my zyrtec (which I didn’t take very seriously; it’s not important like an SNRI, right? HAH!) and spent one day incoherent and two days merely swollen, crabby and able to cope only by losing myself in mindless tasks or Terry Pratchett books.

Took a day to figure out what was wrong. Partly, that was because I didn’t realize how much the zyrtec was doing for me, and then, of course, there was the headache that made me want to hack off the offending part, which made it quite hard to reason things through.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
J is still avoiding me, hiding in the trailer with the tv when he’s not actively butchering logs. It’s possible this chicane isn’t over yet; his behavior is usually a reasonable guide to how unbearable I am.

I only took one zyrtec today, as my stomach would not even think about more. In a couple of days I may be back up to my usual 2. It will be nice to have normal fingers; reasonably functional digestion; less inflammatory pain playing xylophone on my spine, with rimshots off the other joints; and maybe a calm and considerate personality again.

Anything is possible.
Trapeze_artists_1890

Isy’s anti-inflammatory mashed potatoes
Obviously not for those with belladonna sensitivity.

  • 5 pounds organic red potatoes, cleaned and coarsely chopped
  • Turkey broth
  • 1 organic white onion, diced and lightly browned
  • 4 oz grassfed butter, like Kerrygold or Organic Valley Grassfed, in chunks
  • 10-12 oz grassfed aged cheddar, like Oscar Wilde 2 yr, Cabot Extra-Sharp, or Kerrygold aged cheddar, sliced or chunked
  • Optional: nitrate-free naturally-raised bacon, like Niman Ranch, cooked until very crisp, then drained and crumbled fine

Steam the potatoes in the turkey broth.

You might need to assemble the rest by halves, depending on the volume of your mixing bowl or blender.

Dump the rest of the ingredients into a mixing bowl or, if you have a really good blender, use that instead. Put the potatoes and broth on top, so the butter and cheese start melting under them and make it blend better.

Beat or blend until it’s the consistency you like.

Enjoy it nice and warm on an achy day.

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Un Crossed

Note – For legal reasons, this article is explicitly labeled an opinion piece. Quotes are used with prior permission of the author.

I’ve written of bereavement, suicide, the fact that CRPS is not imaginary (the whole point of this blog), and the true mortality rate of CRPS.

Now it has all come together.

Cross Y. was a friend of mine. He wore his heart on his sleeve — there was no deception about him, no malingering, no lying, no selfishness. Selfishness was something he needed more of, and tried to aspire to, because he forgot his own needs in the face of others’. His kind and loving heart poured forth upon his CRPS kindred and those he loved, often in scintillatingly original and muscular words.

He was injured at work. You’ve seen the news about corruption in New Jersey. Add to that the corruption of the Worker’s Comp system, and try to imagine for one minute what that might be like.

July 8, 2013
The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound,

The truth will set me free,
technology,
paper trial was the beginning,
soon the end,
your dark tunnel will remain,
Yes this once holy man,
once believed,
now a fucked up memory,
many joined,
happily crucified,
only one will remain,
your future is in vain,
your lies you cannot hide,
you may run,
change your name,
DNA will remain.

The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound.

Cross Y 7/6/13 1.21pm

He was a good-looking young Middle Eastern man, so of course, the New Jersey cops figured he was dirty from the get-go.
Cross solo
Then his brother, who didn’t believe he had this disease, became a cop, and things got worse still.

I watched his family dynamics transform as his marriage with a green-card seeker fell apart, then his beloved family started to fail him, and then he spent the best part of a year fighting to survive in an increasingly hostile and impossible hail of abuse, predation, invasion, and brutality.

The system failed him. His lawyer failed him. His family failed him. The original newspaper articles, based on interviews with his family, trivialize and brutalize still further the brightest mystic-poet I’ve ever known.

I’m grieved. More than that, I’m furious.

I had to watch as his extraordinary resilience was pushed and pushed and pushed until every strand of rubber broke.

I had to watch as his stumbling command of English prose was used to throw away the meaning behind his words. Judges and doctors alike could hardly be bothered to listen, and certainly couldn’t be bothered to believe him. Those of us who knew him had to watch as his posts wove between intelligent determination and raging despair, as time after time after time he was thrown back from what properly belonged to him.

His wife stole $30,000 of disability checks. His wife dumped him as soon as her immigration status was assured. His wife pushed him down off his weak leg.

Guess who went to jail? It wasn’t his wife. Try to imagine cold, sharp steel cuffs snapping tightly on CRPS wrists. You can’t. The world isn’t supposed to be large enough to hold that much pain.

August 6, 2013
The color of my eyes have become

the mountain I cannot climb,
the west brings the rainy days,
the east brings the heat,
So I wait,
I’ll give you my night,
I’ll give you my site,
I’ll give you my last breath,

The color of my eyes have become

the mountain I cannot climb,
Realities exist,
Unwinding occurs,
Petals unfolding,
Protecting what’s remaining,
Adapting each day,
Earth is distributing,
New sign,
New rhythm for humanity,
Being Bold,
Voice your feelings,

Full moon of greatness,
Hidden lights reflecting,
Fire resurrecting,
Slumbering beliefs,
Illusions of the underground,
Transformation of natural field,

The color of my eyes have become

the mountain I cannot climb.

9.42am 8/6/13 Lost soul

His brother’s police pals broke into his room (or were let in by his parents), stole his thumb drive, plowed through his poetry and his belongings, took his personal belongings, hacked his hard drive and his accounts. When he said he was going to install a spycam for evidence, his parents got him involuntarily committed to a public psychiatric hospital in New Jersey. They did not treat his CRPS, which was, after all, all in his head. They treated delusions that didn’t exist and a paranoia that was a perfectly rational response to his ghastly situation.

He got in line for emergency housing, but the wait list was at least 6 months long — for emergency housing. A combination of Governor Christie and Hurricane Sandy saw to that. The emergency housing and homeless shelters in New Jersey have been utterly gutted.

Three weeks ago, his father attacked and strangled him at a barbecue, in front of others. He posted a picture of himself afterward, with a bleeding bruise under one eye and big red welts around his neck, with the distinctive engorged look around the eye-bones (remember this is a former Emergency nurse writing this.)

His mother stood by and watched.

Someone called the police.

The partygoers disappeared.

His mother told the police that her husband had not attacked Cross, but that Cross had attacked her — with a knife.

Guess who got the handcuffs…

In private, she later apologized, and said she’d write a statement retracting the police report and her statements behind the psychiatric report.

She reneged.

He was living with people who were actively trying to destroy him. His work was being invaded and stolen. His life was in danger. Not even his dog’s life was safe.
Cross and his dog Leo
He had a sign posted in the rear window of his car: “We burn until there is a cure for RSD/CRPS.”

With perfect logic, he burned his car, before jumping to his death in the most beautiful part of the state. Of such indelibly poetic actions are myths made.

For him, there was no cure.

July 7, 2013
They Murdered me, I never

committed Suicide….

This disease is not imaginary. He was not crazy. He was perilously sane. He was a warm and loving soul with a shining gift of a mind, trapped in a fatally tightening spiral.

All he is now is a tragically truncated memory. What’s left is what we can scrape together of his work from our online conversations.

They keep saying he died of suicide. That’s not true. He died of torture: CRPS, institutional murder, and child abuse.

I. Am. Furious.

Cross, however, is finally at peace.

Reaching the Universe

Silence the past,
Silence the worries,
Silence the outside,
Silence the future,
Silence the self,
Silence the noise,
Silence the people,
Silence the voices,
Everything has left,
Faith in the now moment,
Faith that I am present to myself,
You are stripped,
You are Free,
You are Pure.
You are reaching the universe.

– Cross Y

Rest in peace, my darling, shining brother.

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Define “invasive”

I was a Registered Nurse for 8 years — in one of the first HIV specialist units in the country, in the only public ER of one of the murder capitals of the US, in cardiac telemetry, in home care. It was a good, demanding, well-rounded career, if a bit short for my taste.

I’ve often wanted to re-educate my nursing self in light of my experience as a patient.
me-tongue-out
Here’s one of the most outstanding, outrageous lies we tell ourselves as clinicians: medications are not invasive.

That statement bears no resemblance to the reality of those being treated. It relates entirely and exclusively to the clinician’s experience. The clinician’s unstated assumption is, “I’m not hanging onto the thing that’s getting under your skin; therefore, what I’m doing is not invasive.”

News flash: Treatment is not about the clinician. It’s about the person being treated.
me_wrysmile
Medications get taken into the whole body, not just the ill part. Injections go right past the first barrier against infection and assault, the skin. Oral medications go through the mouth, descend into the stomach, and there meet the second barrier to infection and assault, the GI system… which they either aren’t bothered by, or can resist.

They’re then taken up by the blood, which goes everywhere.
circulation-allbody-Anna_Fischer-Dückelmann_1856–1917
They are all processed in the liver (it’s called “phosphorylation” and, privately, I suspect that’s why we tend to have trouble with phosphorus issues when we’re on lots of meds.) This is why too many meds for too long can lead, or contribute, to liver failure.

What goes through the liver goes through the spleen and kidneys, because that’s how it works. This is why some drugs can cause kidney damage.

What hangs out in the blood can, all too often, hang out in the brain. This is why some medications for organ issues or even a simple infection can cause deafness.

Blood circulation exchanges fluids with lymphatic circulation. Blood and lymph communicate with the central nervous system via the blood/brain barrier and the sheath around the spinal cord. The blood/brain barrier provides partial, rather temperamental protection, but it can be suborned by anything that makes the tissues fragile — fever, illness, injury… and some kinds of medication.

What is in the blood goes everywhere.
circulation-allbody-Anna_Fischer-Dückelmann_1856–1917
How is that not invasive?

I’m watching my partner fading with weakness after only a week on a couple of cardiac meds. I’m certain his heart has not gotten worse in a measly 7 days. The only thing that has changed is that he is seeing doctors and taking medication — for nearly the first time in his life. (“No side effects,” my left foot.)

How much of that weariness is stress, how much of it is the past couple of years catching up with him, how much of it is heart disease (actually, that part is pretty clear) and how much of it is medications? Each of these things has some part in it, there’s no question, but drawing the line between them is more than I can really do. I know the meds are part of it, but how much?

Medications are intimately, unavoidably invasive. There is no completely safe dose, and there is nothing that helps you for free.

Everything — meds, interventions, surgeries — EVERYTHING has side effects. There is no single thing you can do to your body, or allow others to do, that doesn’t affect every part of you in some way.

My years as a CRPSer, where the consequences of every change are so exaggerated, makes this pitilessly clear to me.

Given that there is no free ride, we have to look at the tradeoffs. Knowing that there are issues with absolutely everything, however “natural” or “close to our bodies’ own chemicals” it may be, we have to balance that against whatever benefits it may have.

Herbs are included, by the way. My increased sun sensitivity (which my disease causes a bit of anyway) and impairment of birth control (which I don’t take — what, mess with these chaotic hormones?) are side effects I shoulder with my eyes open, so that I can have the neurotransmitter support of the St. John’s wort herb I take twice a day.
St._Johns-wort_(Hypericum_tetrapetalum)_(6316227601)
I review all my medications twice a year at least, to see how I can tread the narrow path between optimum benefit and minimal confusion. Doing this from a chronically slightly confused state is, naturally, a whole different kind of fun. Working out which part of the daffiness is disease and which part is meds and supplements is really my most important task.

My partner has to choose between cautiously building back up some heart strength and circulation — and meanwhile have a life that is a small fraction of what he used to have for energy and activity, unless and until the medications and rehab really work; or risking the total loss of death by having a surgery which would leave him in pain and in rehab for awhile — but, afterwards, bring him back a lot closer to his normal, with many good years ahead.

Wait and see and work and hope, or take a leap and — if you live — work and probably win?

In a way, I envy him. If there were a procedure to do a bypass graft to eliminate CRPS, I’d be in the OR already. I’ve had enough of a twilit life, of exhaustion and fog. I want to get back into the full sun.

I miss running, too.

But it’s his heart, not mine. I do my best to explain things, listen carefully so as not to run over his real thoughts, and grab hold of my anxiety with both hands, so that any decision made is truly his. As it has to be.

Until then, he has to peer through the fog and work through the weariness of these “non-invasive” medications, to make his choices and his appointments. I’m just there to help — and to make sure he’s taken seriously, which is a real drawback to looking as fit as he does.
J-playing-on-treadmill
But that issue is another post…

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Just like Hemingway (no, really)

I read, years ago, something from Ernest Hemingway about his process. (I can’t wait to see which of my literary friends will be able to tell me where he wrote this.)

He took off, for months or years at a time, to live. In his terms, that meant running with the bulls, or falling down mountains, or shaking his sweat off into the sea. He had what most of us would call adventures, big hairy spans of eventfulness, in which he’d get immersed past the reach of words, and soak up sheer experience.
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He said, mindfully, that it took weeks or months to regain his command of his wordcraft, but if he didn’t take the time out from writing in order to take time to live, there would be nothing to write about.

Needless to say, I’m envious that he had the choice. Lucky swine.

It’s safe to say that I’ve been living — if not in Hemingway’s terms, then certainly in my own — occasionally even past the reach of words, or at least past the desire to use them.
me-fingers-2up
Some experiences are beyond words, but not beyond gestures.

Some things are a lot more entertaining in retrospect, and if it takes a few weeks or a few months to be able to write about them in the way I want to, well, the time will pass anyway.

Meanwhile, we are working simultaneously on getting me back my brain and getting darling J back his heart. Both are turning out to be a bit trickier than we’d thought.
sketc h of excessively happy doctor running with a hypodermic needle

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Threads on the loom: bereavement and CRPS

When I was 4, we moved to New Jersey from Turkey, as my parents thought their kids should get a feel for their native land. Our new backfence neighbors were a large and lovely family from Virginia, so I learned to spell “dog” both with and without a “w” by the time I was six.

The youngest daughter got me going on poetry. We read A. A. Milne and Louis Untermeyer in between dips in the kiddie pool. Her Mom, Mrs P, gave me drawing lessons when I was about 9.

My Mom was very maternal in her genuine enthusiasm for all my art. (I found that frustrating, because I knew it could be better and had no idea how to make it so.)

Mrs P did not have that problem with me… Her key edicts make reasonable rules for living: For one thing, I should not draw the whole scene until I was capable enough (don’t let things overwhelm you.) I had to pick the parts that were most important or that caught my eye, keep it simple, and do it right – or else there’d be erasing, and, if you erase too much, the surface gets harder to work on. (Isn’t that the truth.)

She was also good for the reality check. She quickly eliminated my grade-school habit of drawing red apples and brown trees, but made me look at a real apple and draw that; hold my colored pencils up to the tree and see which colors really matched.

See what’s really there, not what I expect or what I’ve been told things should look like.

The biggest note of approval I ever got from her was, “not bad.” By the time I was 6 weeks in, I was able to collect a “not bad” or two almost every lesson, which pleased me no end.

CRPS took away the link between brain and hand that let me make art, but one thing really stuck with me …

Why settle for good or even great, when you could aim for making it absolutely right?

“Good” and “great” are about others’ opinions, but “absolutely right” is something ageless that stands on its own.

Later that year, our parents sat us down to have a family meeting. Dad had been offered a job in Cairo, Egypt. He wanted to know what we thought about moving to Egypt in a few months. Mom and Dad discussed pros (long list) and cons (short list.) Older Brother asked about schooling (very good) and the social scene (unknown, but probably interesting.) Younger Brother piped up with characteristic curiosity and adaptability.

It seemed like a done deal, but I was wrong. Dad looked at me and said, “What do you think, Isy?” I must have looked surprised. He said, “You have a good sense of people. I don’t want to finalize this decision until I hear what you think it’ll do to us, either way.”

Should I be nice? My first instinct was to be nice, to stick up for the shabby underdog (in this case, New Jersey), to do what I thought was expected of me … but it stuck in my craw. Perhaps Mrs P’s lessons on seeing things as they really are had sunk in.
I said, quite honestly, that New Jersey was not being good for any of us (except maybe Younger Brother) and that Egypt would be new and interesting. We all liked new and interesting. So, as far as I could see, it was hard to see a downside to going, and hard to see an upside to staying.

So we went. And I got an early lesson in the value of calling it like I see it.

Our vacations were dreamlike, because we were close to some of the most striking sights in the world:

  • El Alamein and the remains of fallen soldiers from 5 continents;
  • The Red Sea, when it was still the most outstandingly varied and brilliant source of sea life on Earth (it’s still good in spots, as that video shows);
  • The southwest coast of Turkey when Bodrum (formerly known as Halicarnassus) was still a fishing town and their medieval castle the tallest building in it;
  • And, of course, the remains of roughly 8,000 years of Egyptian history from before the Old Kingdom, down through all those Rameses, Greek absorption, Roman annexation, Medieval flowering and Mameluk co-optation, the French and British tradeoffs, modernization as the royal family fell and the secular dictatorship accepted Nazi help to fend off the British return, the flowering of art and writing as the world wars faded and the newly mobile masses could collect like runoff from the tortured continent to the north. The Ancient history is only the beginning…

During the day, I learned about path-finding, history, and sea life, and in the evenings my mother read to us from local literature such as the Odyssey, the Iliad, My Family and Other Animals, even A Connecticut Yankee in King Arthur’s Court (the sharpest satire on jingoism and culture shock ever written.)

My parents had a gift for making the most of teachable moments.

The move turned out to be an excellent choice for all of us: Older Brother became a track star on the international circuit, I found a crop of kindred spirits, Younger Brother’s precocious historicity kept growing, Mom became a successful working photographer (and, as it happened, a role model of working womanhood for every intelligent female friend I had), and Dad got paid to help people – then towns – then governments get better and better at handling their money and improving their chances for a sustainable future.

The day I drafted this is the 38th anniversary of that move.

Dad was great at practical stuff. He genuinely liked humans, despite being such a historian. He often said that people are like table wine. Each one is a blend of different strains: good and bad, clever and foolish, creative and not, good with money and profligate, nice and otherwise… and each person’s blend is a little bit different. If you can accept each of them as the blend they are, and not try to change them – into a different blend, or even into beer, for instance – then you could really come to appreciate the variety that this world has to offer.

People are what they are. Accepting that makes for better connections.

The first time he taught me to drive was when we were on vacation in France, which was cheaper to get to than the US. We had rented a historical farmhouse that was about to become a gîte (at which point the price would go up), so we got all the benefits – a fireplace Younger Brother could stand up in, window sills two feet thick to sit on, a lush yard going down to a creek at the bottom with a moat up one side of the yard, a line of stately chestnut trees, twittering birds, fresh eggs and raw milk from the neighbor – for considerably less than we should have paid.

The rental car looked like it came straight out of a matchbox, but it was a real, rattly little French Renault. Dad sat in the passenger seat and directed me to the driver’s seat. He told me about the brake, the gas and clutch, the gear shift, the friction point, and how it all came together. I got the friction point coordinated and tested it a few times.

Then he said, “Okay, here we go.” I checked the friction point again and then stopped. He said, “No, I want you to go. Go ahead and drive across the yard.”

Oh, okay then. I can do this.

I grabbed the wheel tightly, engaged the gear, and eased past the friction point.

The car snorted briefly, pawed the ground, took the bit firmly between its teeth, and off it went. Or so it seemed to me.

The car charged off the gravel, kicking it up behind. It careened over the lush yard, carrying us past (fortunately) the huge stone house. It rocked and bounced off of molehills, scoring crazy tracks through the soft green earth.

I noticed my Dad was yelling, but he never yelled, so that was confusing. I didn’t understand a word of it, anyway.

Completely out of its metallic mind, the car charged past the trees, heading straight for the neatly-dug moat.

I was helpless to stop it. My own involvement had escaped my awareness completely. I simply hung onto the steering wheel for dear life, eyes wider than ever, completely absent to the fact that MY FOOT WAS ON THE GAS.

All at once, Dad finally got his full-grown leg around the gear shift and kicked my foot off the gas pedal and stamped on the brake in one astoundingly swift move.

The car sputtered, died, rocked to a standstill.

Its front wheels were on the lip of the moat. Below us, three feet of water and unimaginable depths of sticky mud glittered silently.

Little clods of earth trickled out from under the front tires and dropped in, stirring tiny clouds as each one descended through the water and into the mud.

All was quiet. Even the birds were too shocked to peep.

I sat there, frozen, hands locked on the wheel. I was alive. And dry. It was shocking.

I didn’t dare to move.

I heard Dad take a breath, and then take another. I felt, even with my head still turned away, two completely different speeches considered, then thrown away before he even made a sound.

I turned to see what he’d finally settle on, and whether it would finally involve a pair of hands wrapped around my throat – something I’d never seen him do yet, but you never knew, especially after a performance like that.

A pair of blue lasers drilled me to my seat.

Very quietly, very clearly, very firmly, he said, pronouncing each word distinctly:

“When what you’re doing doesn’t work… Try. Something. Different.”

Words to live by.

It was years until I was anywhere as green as Bordeaux. I lived along the Mohawk Trail in my 20’s. My excellent friend Paul was the hub of a wide circle of friends who, even if we couldn’t always stand each other individually, felt strangely as if we were still part of the same tribe: Paul’s tribe – or, as we called it at the time (such was his gift for invisible influence) The Tribe.

Paul was a master of appreciating people just as they were – even if that was not necessarily what the person in question wanted to be. He was the first to say, in assured tones,

“You’ll figure it out, Bella.”

He wasn’t kidding, either. He had complete faith in me, in spite of the evidence. I don’t know why. It sure helped, though.
My Dad died in early February 1999 while swimming in Egypt. I still remember the way the word “No” echoed off the walls of my little room at 4:08 am, when I got the call. The second flight on my 3-legged trip back East was overbooked, and I was going to get bumped.

I went up to the desk with my untucked button-down shirt, uncombed hair, and my own pair of blue lasers. Very quietly, very clearly, very firmly, I said, pronouncing each word distinctly, “My father is dead. I’m going back to bury him. I will be. On. That. Plane.”

And I was.

On January 23rd the following year, Paul decided to sleep late, and never woke up. On the plane to his funeral, I wrote to the father of one of my oldest friends from Egypt days, who had end-stage cancer. It started something like this:

“I’m on my way to a dear friend’s memorial, and I’m keenly aware that life is short and time is passing. Even though I don’t know you well, because you were my friend’s father rather than my friend directly, you matter to me. I want to let you know how important you’ve been throughout my life.” And then I told him about the ways his life had intersected mine over the years, brightening it along the way.

It was the last letter he received in this life.

Deathiversaries.

That’s my word for those days that sneak up on the calendar, dropping shards of stabbing tears out of a clear blue sky, breaking my knees for a moment as the agony of the unfillable absence hits me anew.

Now, not to strain the violins further, but the period that encompassed the deaths of my father, Paul, and my friend’s father also encompassed several other bereavements, a crippling stroke of my grandmother’s, the heartbreaking failure of my almost-marriage, the end of my nursing career due to illness, being too sickly-weak to make it to the mailbox and back for months, starting a new tech career from nothing but raw talent and pure luck, and moving.

And I really hate moving.

That was all in 18 months. I was a different person at the end of it. I’m sorry to say that it was someone who could face the devastation of CRPS with a lot more poise, but it still sucks.

Last Monday, January 20th, my old neighbor and teacher Mrs P died in her sleep. I haven’t seen her in 38 years (minus a week) but something as sharp and bright as faceted crystal slid out of my world.

My kitten Ari was a comfort to me, flinging himself firmly onto my body, as if to shove his strength and warmth into me.

He was enormous in every way: 10 pounds at 10 months and all of it lanky muscle, enormous love, enormous cheer, enormous charm, enormous athleticism, enormous independence, enormous courage, enormous confidence, enormous sense of humor … he was enormously unusual, even for a cat. He was an enormous invitation to life, just by the way he lived it.

Four nights after that, Ari disappeared. The following morning he was found on the road, dead and cold. Our Lovely Neighbors got us through, from finding his body to explaining to J to telling me. (I’m weaker now. It’s the buckling knees I remember.)
Partner J dug a perfect meter-deep grave, bedded it 6” deep in sprigs of fresh California bay while I blew sage smoke in, and I carried my kitten down to his final spot in the sun, at the bend in the path where he played with our dog and the Lovely Neighbors’ numerous cats.

I took the loss hard.

I’m an old hand at grieving. I can walk through the stages and the process in my sleep, although my body handles it worse all the time.

  1. The initial devastation and shock.
  2. The tasks:
    1. communicating the news,
    2. planning the funerary rites,
    3. preparing the final rest,
    4. performing the rites one needs to lay the deceased, as well as life with the deceased, to rest,
    5. cleaning up their things,
    6. comforting each other,
    7. getting something to eat,
    8. reminding everyone to be extra careful and remember to drink lots of water, which we tend to forget nevertheless.
  3. The reactions:
    • Noticing the way sunshine lands on my skin and birds sing in the trees but it seems to come from a world that’s not quite the one I’m in.
    • The way I have casual surges of wishful thinking: wouldn’t a bullet in the brain be nice about now? This isn’t suicidality (I promise), it’s my mind’s way of signaling that it’s overwhelmed by horrible feelings that it can’t do anything about, and it’s tired and doesn’t know what to do.
    • Re-learn the daily habits that this person (of however many feet) used to be involved in. That’s so dislocating. I don’t need to eyeball a certain corner of the bed before moving my feet now. I’m not even awake when I do that. It’s so horribly weird to wake up by realizing I don’t have to look.

Then the misnamed “stages” of grief, which are really nodes, which can be visited in any order.

  • The anguish, where life without that person has to be faced.
  • The anger, like, why couldn’t that little cuss cross under the bridge as usual, instead of testing one more damned limit and crossing over?
  • The bargaining, although I stopped bargaining years ago. I don’t seem to do that now. Too many unanswered prayers wept and bled into silence.
  • The sweet memories that stab like a ray of sun in my eyes, bringing tears that gradually wane over time, until those memories bring mostly sunshine.
  • Finding a new pattern beginning to emerge in my life, one that encompasses that absence without filling it, but making it less of an obstacle over time. They call that “acceptance”, but I think that’s a bit of a misnomer. I’d call it adapting.

I’ve only realized how very deep and interconnected life is by losing parts of mine. In that 18-month period of multiple losses, I found myself mulling the image of a complex weave on a loom, where each person and each influence in my life was a thread.

Some threads were solid and stable, some were wildly colorful, some thick with burrs, some wove in and out of the pattern, some were knotty and strange, some were pure gold.

When a major thread, or a lot of threads of any size, were ripped off the loom, then the fabric was distorted and there was a visible gap in it for a long time. I could weave on, but that band of the fabric was weaker – sometimes for years, sometimes for a lifetime. It takes a very long time to rebuild from the loss of enough warp threads.

It takes time to work new threads into the weave of life, and longer still to see which ones work in the overall pattern, and which ones fall out on their own – or need to be pulled out, for the damage they do to the rest.

Some people and influences are part of the warp, as they’re meant to stay in the weave for its length and are made to be strong. Career, close family, good friends, matters of identity – these are all warp threads which usually shape and color our lives all along its length. Each one has its own color and texture and breadth, which varies from person to person, and each contributes a depth of color and texture to the weaving that nothing else can provide.

In life, unlike fabric, the warp threads are highly individual.

When one of those gets ripped out, the whole weave … well … warps.

Some people and influences are weft threads, and are easier to change out. Doctors are usually weft threads, although the need for medical care is a warp thread for some of us. Jobs are weft, while careers are usually warp.

I lost a number of warp threads in that 18-month period. Between the end of January and the second week of February, the closest bereavements hit, year after year. The weave of my life has warped, over and over, in the armpit of winter.

I shift my stance from relying unthinkingly on having a lot of strength inside and out, to being mindful and precise about where to put my diminishing attention and energy.

I’ve learned to be more and more aware of good times, genuine love, beautiful days, radiant people, perfect moments, delicious food …

When I look back, I have far fewer regrets when I really noticed good things at the time.

I didn’t expect to have that kitten in the first place.
Even in this season of bereavement, I didn’t expect to lose him so soon.

But when he was here, keeping me permanently in a mild state of befuddlement because he was so much larger than life but still so very young, I sure noticed.

One day, that should be a comfort.

Meanwhile, as CRPS continues to change the game on me, I’m trying to learn to handle bereavement-amidst-deathiversaries with this new and different body-system.

My autonomic system is normally in a state that maps most closely to that of someone who’s being continually beaten with a live cattle prod, but years of practice have taught me when to ignore it and how to manage the results somewhat.

It gets better and worse from time to time. Stress, uncertainty, poor diet, missed meds, solar flares (believe it or not), and injuries, all crank up the volume on my oscillating central nervous system.

Bereavement is stressful, unpredictable, and contributes to poor diet, missed meds, and injuries. (Possibly solar flares for all I know.) Deathiversaries are a hardwired physical memory of bereavements. Having both at once is like being hit from both sides at once. Double oscillations that don’t cancel each other out, but feed into each other and magnify their effects.

All right… What’s an oscillating nervous system like?

Right now, the skin on my face is so raw that my partner’s nice springy beard feels sharper than a cheese-grater. My left lower leg wants to turn into a lump of Dacron, impenetrable and basically useless. My wrists and forearms, well, the less said the better, but I have to hold my mug with both hands to avoid wearing what’s in it. I went outside in soft shoes today (I usually wear hiking shoes) and the friendly little stones in the yard slowed me down considerably, as each one wanted to get way too personal with my foot-bones.

That’s the physical side of CRPS.

Because of the brain changes that make that stuff happen, there’s a parallel process that happens on the emotional side. Imagine the same degree of relentless rawness and unquenchable pain inside the heart and mind, and you’ll have some idea what it’s like.

I’ll give you a minute, if you like.

I don’t mean to whine, it’s just a fact of life with this disease. It takes a lot of managing, because my mental state wants to default to, well… how distressing and upsetting it is to be beaten continually with a live cattle prod.

How do you deal with an oscillating nervous system?

When your world is being purged, it’s important to replenish and nourish. This means extra antioxidants, extra meditation/biofeedback, extra hugs, and – if possible – someone else to clean the house and help with laundry and cooking.

One must eat, clean, and cope, and if it takes help, then I ask for help.

Herbal lemon balm extract helps cut the flared nerve pain. Chamomile and lavender tea, maybe with tulsi, helps me get to sleep. Some people do well with vervain or ashwaganda.

Homeopathics like ignatia amara and hypericum ease other parts of my nervous system responses. Also, I use an essential oil blend from Young Living called Valor, to reduce the hotwired panic reflex and hyper-alertness.

In case it isn’t obvious …

I don’t care what academics say, I only care what works for me. Empiricism is the only form of science that matters in the individual case.

I keep busy in order to keep my mind from exploding over the surfeit of losses and memories of losses, while CRPS takes the brakes off of all the feelings – physical and emotional alike.

This leaves me to manage the resulting inward chaos with whatever poise I can fake, because I know that a certain part of it is grief but a certain part of it is simply brain damage.

Either way, it will ease up in time.

So I keep busy, take my supplements, comfort the dog (whose heartsick look would make a stone weep), try not to draw attention to my partner’s look of not knowing what hit him, and wait …

Mostly, I wait for the balm of time, because it doesn’t change the loss, but it helps me learn to live with it.

Also, it moves the deathiversaries into my rearview mirror for another year. Until then, I’ll hold the love and leave the pain as much as I can.

Lastly, I wait for the fierce oscillations of my nervous system, humming and shaking like a five-foot-high tuning fork, to decrease and diminish and eventually …
quiet down …
to … a …
stop.

There is always an afterwards. Survival is simply a matter of getting to it.

Managing CRPS under this kind of duress is not magic, it’s persistence.

I keep breathing and let the awful moments pass. I’m old enough, both as a person and a CRPSer, to know that there are better ones ahead.

All I have to do is get there.

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