Of Mice, Medicine, and Malefactors

Older Brother and his wife, Aunt Krusty, sent me a fabulous little doohicky from a medieval town they visited. It’s a brooch of a common design element used in the Middle Ages: a tabby cat with two tails and fabulous eyebrows offering a mouse, with the legend, “visis mu” — “here’s the mouse.”

Pewter pin of tabby cat as described in text.
Close inspection shows both letter “s”s to be upside down. I’ve known a few artisans, and they like making people twist their heads around. Besides, that’s relevant. You’ll see why.

The enclosed card contains the usual wonderfully vague, semi-academic wording saying that animals with two tails (no mention of fabulous eyebrows) are signifiers of evil forces at work, but beyond that, nobody really knows what this means.

I thought some academics kept cats…?

My lovely polyglot friend Sylvie does. Sylvie is a CRPS compatriot who lost a frightening percentage of weight late last year, from which she’s still recovering. Her cat Nala has become a serial killer of the entire species Rodentia, bringing her grisly accomplishments to lay at Sylvie’s feet — or couch, or pillow — with startling frequency. Naturally, they aren’t always quite dead.

Pinto cat biting into white mouse on a lawn.
Not Nala, but a kindred spirit. Photo Tomasz Sienicki @ Wikimedia Commons.

Cats don’t have thumbs, so they don’t really get it about cooking and cupboards. All Nala knows is that Sylvie obviously needs to work on her hunting skills, but in the meantime, Nala can at least help her fatten up.

Also, cats tend to gatomorphize, just as those of us who are close to them tend to anthropomorphize. Nala has no idea that mice, gophers, shrews, and moles do Sylvie no good at all; that, on the contrary, they’re upsetting, messy, and potentially infectious. Nala thinks they’re good, and Nala cares for Sylvie, so they must be good for Sylvie.

She honestly believes that, with all her furry, loving little heart. “Visis mu! Have this great mouse!” So the slaughter continues.

Sylvie’s garden blooms, but her house is an abattoir at times. This is not a bad metaphor for explaining one of the more difficult aspects of being under a doctor’s care.

Most doctors really mean well. Becoming a physician takes an enormous amount of work, which requires great commitment to complete. It’s a hard job with ridiculous hours, especially for the first few years.

That doesn’t mean they’re all bright or gifted or even humane. It just means they believe in the value of medicine and surgery, enough to spend a decade or more learning to do it.

Line drawing of doctor going over an x-ray with patients.
There is much care and dedication among many doctors.

Doctors are intensely, let’s say, socialized to stay within the parameters of accepted practice. It keeps them out of trouble, although it may also keep them from true excellence at times.

Mostly, they love those parameters. They love having guidelines. They are truly, madly, deeply convinced of the value of the meds and procedures that they’re trained in. It doesn’t help that, if they put a foot wrong outside of those parameters and things don’t go well, they can lose everything. They are heavily incented, so to speak, to stay inside whatever they understand their parameters to be.

And, of course, the peer pressure is enormous.
And, of course, the peer pressure is enormous.

Now, this is tough for CRPS patients. There is so much variation from one CRPSer to the next, that there are NO established treatment parameters that meet the medical gold standard of being consistent, repeatable and reliable over a majority of patients.

None. Nada. Zilch. There is not one thing that consistently works well for most of us — at least nothing that comes from a bottle or an operating room. Activity, rest, hydration and nutrition all seem to be key, but even their benefits are hugely variable, and you rarely hear about them from physicians.

For a while, it was thought that COX-2 inhibitors combined with membrane stabilizers, came close to being a semi-magical bullet. (Gabapentin/ Neurontin, pregabalin/Lyrica, and so on, are known to most patients as anti-seizure meds, but many healthcare providers call them membrane stabilizers.)

Then it turned out that the Dr. Scott Reuben, the physician who popularized that treatment, was making the numbers up (here, reported to his colleagues and here, reported to science fans.)

Old poster of a show called, "Pinocchio, the tale of a marionette"
He was so busy being a puppet of the drug companies paying him, that he forgot what it means to be real.

COX-2 inhibitors were given a general thumbs-down over cardiac effects (which many people with chronic CRPS have enough trouble with anyway) and, as peri-surgical meds, did not live up to Reuben’s promise that subsequent chronic pain would be less.

Ironically, it had already been established that 500 mg of vitamin C two or three times daily for 3 months after surgery does have significant demonstrated benefit, reducing the incidence of CRPS – the most intractable and severe form of chronic pain – by 35-80%, depending on the extremity, extent of injury, and probably the degree of compliance. Moreover, vitamin C is very cheap, as well as very effective. (See extensive links list below.)

The anti-seizure meds, unfortunately for pain patients, did not get removed from first-line treatment.

By then, unfortunately, whole nations (Great Britain and the Netherlands, take a bow) had adopted Reuben’s corrupt recommendations for first-line treatment. It takes a lot more effort to undo that level of adoption than it does to hoodwink an entire sub-economy of peer reviewers and medical specialists, apparently.

The arrogantly reputable journals that accepted his work, and subsequently published other work which was based unquestioningly on his false results, are still trying to live it down. What’s interesting is that other doctors couldn’t replicate his results, so he was the only one publishing these great data… yet journals and physicians continued to publish and follow his recommendations. I do hope the journals revised their “peer-review” process to include more actual, I don’t know, reviewing, perhaps by peers.

Old cartoon of Pinocchio sitting on a pile of books, with a book open on his lap.
It took a lot of people to permit and perpetuate Reuben’s false reports. They are not innocent.

It could take decades to undo much of his damage, and meanwhile, the advancement of treatment has been down the wrong track for years, while other more appropriate avenues of treatment have been ignored or even forgotten.

So, millions of CRPS patients are being first-lined with truly obnoxious meds with iffy benefits and ghastly side-effects, rather than being examined as individuals, and assessed as to whether:

  • neurotransmitter support, most provably with antidepressants, would be more appropriate, given disease-related onset of affective symptoms (antidepressants), sleep problems (tricyclics), or dysautonomia (SNRI);
  • a short, hard attack of narcotics and aggressive PT would answer in the case of a hardy, active, or young person;
  • a proprietary or tech-based treatment, like TCMI or Calmare, are indicated for those who show active neuroplasticity or respond well to electrical stim; or
  • this person is a good candidate for ketamine protocols of one kind or another, some of which are no more toxic than membrane stabilizers.
  • it might be reasonable to try a more experimental approach which has demonstrated significant promise, notably magnesium infusions, immune globulin therapy, or temporary immune suppression.

Oops… Doctors, as a group, forgot to look at the patients in their excitement to have a designated treatment protocol. “Visis mu! Take this mouse – it’s government approved!

If you've worked with government agencies, you know why they're laughing.
If you’ve worked with government agencies, you know why they’re laughing.

But the doctors doing the offering really think this is a great idea. That’s what the guidelines say, after all, and they are evidence-based – except that that evidence was cooked.

While anti-seizure meds do work very well for some, starting with them reflexively is not reasonable: the cost-benefit profile is worse than most of the other potential first-line alternatives, due to high rates of side effects and comparatively unimpressive rates of usefulness.

Using them as a first-line treatment delays more effective, lower-cost treatment for many people in horrific pain, and, between the delay and the cognitive and neurologic side effects of this class of drugs, causes greater impairment (with higher associated costs) in far too many. It should be a second or even third line treatment, if you go by the evidence that has remained credible – taking a back seat to less fraught (not perfect, but still less problematic) therapeutic agents and interventions.

But the docs who lean on it really think it’s great.

sketch of excessively happy doctor running with a hypodermic needle
“Visis mu! Visis mu! Look – it’s a great mouse!”

Reminds me of my previous pain doctor, a competent technician with a bedside manner directly related to the patient’s appearance. He has a good reputation in his area – which tells you what a lot of rubbishy practitioners there were in the area.

He wanted to shove into the neck of my spinal column a couple of widgets which were the size of Starbucks drinking straws – you know, those really fat ones that you could suck a steak through, if it’s tender enough. Two of those, jammed into a six-inch length of a space that didn’t have enough room for one, and which – as we now know – was already inflamed in much the same way that the spinal cord of someone with a spinal cord injury is inflamed.

He liked it because shoving surgical hardware into other people’s bodies is what he does best, and these widgets have embedded electrodes which could zap the pain signal at the spinal root of my arms and he thought it would work really well and I had the right psych profile for it and this was the greatest thing since sliced bread.

"Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!"
“Visis mu! Visis mu! This is a truly excellent mouse which I am shoving smugly up your spine!”

It was a nice idea, and, again, this particular thing works spectacularly well for some people. For me, not so much. In fact, it was a disaster. It was truly worse than the CRPS pain, which takes some doing. The equipment trial still gives me spasms due to the mere memory of the staggering physical trauma it entailed.

Truly, each of us is unique.

Once he realized that I couldn’t accept his mouse, his whole manner changed. Just like a sulky cat, nursing his disappointment seemed a lot more important to him than finding something that would help me.

How could I be so callow and blind that I couldn’t appreciate this great mouse he wanted to give me? There’s just no helping some people! His neglect and disaffection was so damaging I had to fire him and move on to the excellent Dr. Richeimer at USC Pain Center, 4 hours’ drive away and worth the two-night stay in the armpit of LA.

Another dear friend, the angelically kind M, has roughly 3 dozen anaphylactic reactions a year. She is so hyper-reactive to so many things that driving past a town with the wind in the wrong direction could be the death of her. 3 dozen anaphylactic reactions a year, and she’s in her fifties now. Yes, amazing.

She saw a young cardiologist, who did what young cardiologists do: he threw upon her a huge, bloody gopher, covered in prickles and gore. “Your heart is dicky! This could kill you in a year! Visis mu, I can save you! Isn’t this exciting?”

Sepia-toned photo of a very dead, gutted gopher.
I processed this image out of respect for X’s exquisite sensibilities.

Personally, I think the appropriate thing to do is to pick that gopher up and shove it down his throat, but when a patient does it, it’s assault and battery with a biohazardous weapon.

The cardiologist, naturally, is doing exactly what he was trained to do and is wildly excited to have such a thrilling case and such interesting news. She, who already faces death on a weekly basis, should clearly get wound up about this because it might kill her if she doesn’t.

Gopher poking head out of hole, looking grumpy, with long claws and nasty teeth.
“Visis mu! This is a glorious mou — er, gopher! Check out those charming teeth, those tiny claws, that helpful expression! Awesome!

A brickbat? A muzzle? What do you think? Words simply fail. All I can think of is applying to him the kind of cat that has nine tails. It’s not a good way to model compassion, let alone tact, however.

As for me, I have to pick a primary doc for myself. My old one retired from private practice, and I miss him, because I could just walk in and look at him and he’d know.

I’m just thrilled at the prospect of training someone new, who will be a generalist treating the peripheral issues of someone with an incredibly peripheral-intensive disease. There will to be many rounds of “visis mu”, as he comes up to speed. And, since it’s all well-intended, I have to find a way to accept one or two mice as graciously as possible. One can only recoil so often before they decide they can’t treat you.

"Visis mu! I care for you, so let me do this wildly inappropriate thing, because I’m too rushed to think things all the way through!"
“Visis mu! I care for you, so let me do this wildly inappropriate thing, because I’m too rushed to think things all the way through!”

They mean well. They really do.

I never have figured out what to do when a cat, with every evidence of caring attention, brings me a mouse. I try to be nice about it, and that’s the best I can do.

Obit
Sadly, Sylvie’s furry little caregiver, Nala, departed this earth for the Happy Hunting Grounds. By a series of flukes, Sylvie wound up with a rescue cat, Filou (meaning roughly “brat” or “mischief-maker”), who has taken over her care with great enthusiasm — and much less bloodshed.

Links

Grouped by subject.

Sylvie’s blog on “neuroalgodystrophie”, mostly French but some bilingual French/English: http://sylvieghyselscrpsdrc.wordpress.com/

I’m shielding my friend M for safety reasons, but I can point you to a blog on managing immune suppression and chronic pain with few drugs and much natural care: http://www.tamingthebeast.ca/

Scott Reuben’s villainy, as reported to colleagues in Anesthesiology News:
http://www.anesthesiologynews.com/ViewArticle.aspx?d_id=21&a_id=12868
And in Scientific American: http://www.scientificamerican.com/article/a-medical-madoff-anesthestesiologist-faked-data/

Vitamin C after surgery or trauma, value established before Reuben’s fall:
From 1999, in The Lancet: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(99)03059-7/abstract
From 2002, in Belgian orthopedic periodical: http://www.ncbi.nlm.nih.gov/pubmed/12584978
From 2007, in the Journal of Bone and Joint Surgery: http://jbjs.org/content/89/7/1424.long

CRPS at the top of the McGill Pain Index:
https://elleandtheautognome.wordpress.com/2012/09/05/mcgill-pain-index-crps-and-fibromyalgia/

UK treatment protocols for GPs treating CRPS: https://www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-full-guideline.pdf

Netherlands treatment protocols for treating CRPS: http://www.posttraumatischedystrofie.nl/pdf/CRPS_I_Guidelines_patient_version.pdf

Relatively useful treatments for CRPS:
Most suggestions are pulled from the current IASP recommendations for diagnosis and treatment of CRPS or the pivotal work of Dr. R. J. Schwartzman, Dr. van Rijn, and Dr. Breuhl (part of the team that developed the IASP guidelines), with updates from recent science available on PubMed.

Dr. Robert J. Schwartzman’s seminal works..
Outstanding primer on CRPS and what it can do in Systemic Complications of Complex Regional Pain Syndrome
Neuropsychological deficits associated with Complex Regional Pain Syndrome

Dr. van Rijn’s Spreading of complex regional pain syndrome: not a random process

IASP current recommendations: http://onlinelibrary.wiley.com/doi/10.1111/pme.12033/full#pme12033-sec-0023
Simplified diagnostic tool using IASP criteria: http://biowizardry.info/wp/2014/12/the-hidden-simplicity-of-diagnosing-complex-regional-pain-syndrome/

The authors have their blind spots and biases, of course, so researching any therapies that sound interesting is a good use of time.

The National Library of Medicine at the National Institutes of Health (U.S.) is an outstanding clearinghouse of articles from peer-reviewed scientific journals: http://www.ncbi.nlm.nih.gov/pubmed/?term=complex+regional+pain+syndrome
Just add the term of the treatment you’re interested in to the MeSH term, “complex regional pain syndrome”, to maximize useful hits.

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“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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Winter Recipe #1 – Cyano-berry brain booster, with special maple syrup notes

I view a recipe strictly as a starting point.

To some, recipes are instructions to be followed. That’s probably very wise.

To me, they’re a series of friendly suggestions, and every ingredient (except baking powder) has the unspoken caveat, “adjust, substitute, or mess with, to taste.”

The recipes I post are decidedly Isyan recipes. Even if I haven’t made them yet, I’ve made many similar things over the years, so I know they’re in the right ballpark. If you’d like to use them, please do — and realize that every ingredient here carries the implied caveat, “adjust, substitute, or mess with, to taste.”

With good ingredients, you can’t go too far wrong.
antioxidant_foods
When it comes to canning and preserving, I do what I do, but I suggest you follow the instructions you can read at any credible site on the subject. The USDA guide is here.

Cyano-berry Brain Booster

The point of this is to provide a stonking great dose of those anthocyanins and antioxidants which have consistently demonstrated that they help my memory and thinking. This is not desserty at all. I think it makes a great breakfast.

Ingredients:

  • 2.5-3 oz dried organic schizandra berries.
  • 1 Qt/Liter organic concord grape juice.
  • 1 small finger (~1-1.25 inch [~3cm] long piece) fresh ginger, or equivalent powder, to aid digestibility.
  • 2 Tablesp (rounded palmful) ground clove.
  • 1 Tablesp (scant palmful) ground cinnamon.
  • 3 Pounds/1.4 kg wild Boreal blueberries, wild (farmed) blueberries, organic currants, organic bilberries, or the most nutritionally dense, fresh or frozen dark-blue berry you can get your hands on.
  • 3/4-1 C (6-8 fl. oz., or 180ml-240 ml) non-osmosed maple syrup (see note below.)
  • 1/4 C (60 ml, or slightly overflowing palmful) ground chia seed.

Preparation:

Put the schizandra berries into the grape juice. Write the date on the bottle, along with the date 3 weeks on, and stick it in the fridge for 3 weeks. The rest of this waits until the schizandra berries are thoroughly steeped.

When you’re ready to make it all up within the next half day, then blend the berry/juice brewage until the schizandra seeds no longer sound like grit hitting the blades, but like very fine sand. Give it at least one minute. (I wear ear protection for that part, or leave the room.)

Grate the ginger fine.

Grind the chia seed in a spice or coffee grinder.

Rest if needed, then aim to finish the tasks below in one session.

Making and canning:

Put 6 quart bottles and new lids into a deep, lidded pan. Once they have boiled for the recommended length of time, you can turn off the heat and leave them there, good and hot and covered.

Combine the ingredients you’ve already prepared in a large pan. Add the spices and maple syrup. Mix everything well, so the spices are thoroughly incorporated. Add the maple syrup and blueberries. When it starts to simmer, turn the heat down to keep it simmering and stir the chia in, mixing well. I leave it loosely covered and let it cook for 5-10 min. I want to preserve the anthocyanins and the volatile spices, after all, not boil them to distortion and death.

Set the jars and lids up so it’s easy to transfer stuff from the pan. When you fill the jars, leave headroom — don’t fill into the neck. Try to keep anything off the lips of the jars.

Use your favorite clean absorbent material to wipe any dribbles or slurps off the lip of each jar. Each lip should be absolutely perfectly clean, with nothing to interfere with the seal you’re about to create.

Lid, band, and tighten each jar. Return them to the pan they boil in. Boil according to your canning instructions.

I actually boil them for about 5 minutes — this is just clean fruit, with preservative spices. I’ve had no problems, except for one batch that didn’t get the final boil because the fuel ran out. It got a bit fizzy after awhile, and wound up giving me half a quart of the best sparkling spiced-blueberry wine ever, plus half a quart of inedible spiced-blueberry sludge. Overall, a happy accident 🙂

Equipment notes:

I wash everything well, with hot water and soap, before I even boil it. They always put seizing of some sort on new bottles and pans. I can’t stand the taste, and I can’t say it’s likely to be good for me.

Ingredient notes:

Clove is a shockingly strong antioxidant and it helps reduce nerve pain. Having said that, it also has a very strong flavor. If you’re not extremely fond of it, that’s the first ingredient you’ll want to adjust. However, I love it, and I can eat this stuff day after day.

Schizandra berries are called, in Chinese, “Five-flavor berries.” They incorporate the flavors of sweet, sour, bitter, salty/savory, and the fifth flavor we don’t have a word for in English, but if you mix fresh-dug peat with barley malt and plum paste, you’re probably close. I happen to like them, but I’m notoriously odd — and internationalized. There’s no question that they’re amazingly good for the brain. Try them and see. I prefer them to goji berries by a long way, and a lot of people can choke gojis down.

Maple syrup is not what you might think these days. Traditionally, sap is collected from sugar maples during the first real warm spell in early Spring.
maple_syrup_tap
It’s then simmered down to syrup consistency, and the scent of it can drift for a mile downwind…

Most modern producers use reverse-osmosis filtration to reduce the volume of the maple sap, sucking the minerals and much of the flavor out of it, then boil the remainder just enough to say they did. The filters themselves are considered so toxic that they have to be sent to the landfill; all those wonderful minerals that get caked up on it are considered to be no longer fit for human consumption, and must not be used for anything that might possibly wind up in the food chain, according to a representative from one famous and otherwise delightful sugarhouse.

In the end, with reverse osmosis filtration, you get expensive brown sugar syrup, without the kick or the minerals of maple syrup. It all tastes much the same — like good brown sugar made into syrup. Traditional maple syrup, on the other hand, has “terroir”, just like wine. Its flavor varies from place to place, depending on the soil, water, bedrock, and microclimate. The Shelburne/Heath terroir has a refined floral foretaste that has to be tasted to be believed. Right over the ridge, in Ashland, the syrup has a deep earthy note like really great whisky. How awesome is that, eh?

The natural/organic syrup producers I wrote to are fine with the highly artificial process of reverse osmosis, as it saves fuel, which reduces their carbon footprint. Standard practice in that group seems to be to osmose the sap until it’s about a third or half the volume (“two passes”) and boil it down the rest of the way. They “feel” (this tells me that they didn’t get out the test tubes and check the nutritional changes) that they “retain the best of the flavor and nutrition of the syrup.” They really don’t — I can always tell when it’s been osmosed, and a few years ago I went taste-testing hundreds of miles through prime sugaring regions to be sure. I dropped a lot of money on tiny little sampler bottles just to make sure I was not imagining things.

The real test is this: the maple syrups I got from standard supermarkets, Trader Joe’s, and Costco made me hurt. The maple syrups I get from my producers who boil it all the way down does not make me hurt. So, as far as I’m concerned, reverse osmosis either puts something in that hurts me, or takes something out that stops the hurt — but, in either case, osmotic filtration hurts me, and I’m not going to pay money for that.

I use maple syrup in order to have a nutritious, painless and digestible sweetener, so I want the stuff that still has that nutrition and digestibility. It’s a bit pricier than the osmosed stuff, but a pain-free gallon lasts nearly a year in my tea and occasional grain-free pancakes, so it’s money well spent.

Buyer beware. Call and ask the producer if they use reverse-osmosis filtration, or if they boil the raw sap all the way down. I don’t recommend discussing it, just asking… New Englanders are not easily persuaded. They’re generally realistic and decent, though, so if the producer you call uses reverse osmosis, ask if they know someone who doesn’t. If they know someone, they’ll tell you. They might even get you their number.

I got my last good, fully-boiled-down batch from a friend of a friend: Jerry Smith at Deer Ridge Farm, 4057 Hinesburg Rd, Guilford, Vermont, (802) 254-3540.

View Larger Map
He’s on country time, so be ready to call and remind him to post your package if you don’t see it in a week.

Most of the fully-boiled producers do NOT seem to be part of industry groups (e.g., the Massachusetts Maple Producers Association, where I wasted a lot of time contacting members only to find that all those who bothered to return my messages used reverse osmosis.) They’re just farmers who happen to have sugar maples and some equipment, to keep themselves from getting bored during “mud month.” You have to be there to find them — or have good connections, like me 🙂 If any of you New Englanders or Canadians have other fully-boiled-down producers to recommend, please do — the more, the merrier, and it’s good to have fallbacks in a weather-sensitive and seasonal industry.

Note on posting: Priority Mail Flat Rate boxes are the cheapest way to ship heavy things like quarts or gallons of syrup in the U.S. If you need to use international mail, better figure out your best strategy for that ahead of time, since that isn’t in a rural U.S. farmer’s normal frame of reference. A quart of syrup weighs around 3lbs 2 oz (1.45 kg). A gallon weighs around 12 pounds (5.45 kg). These are not exact, as weight varies slightly from batch to batch. It is, after all, a handmade product.

Carriers who ship outside the U.S. include the United States Postal Service, DHL, Fedex and UPS.

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Prelude to winter canning recipes

Don’t you love the change of season? Especially here in Middle Cali, where there’s a hint o’ green to mark the second of our two seasons — Drought and Mold.

But seriously… I just had my first blueberry-clove shake in awhile, and boy am I glad I remembered about them. I’m actually stringing a thought or two together. Not eloquently, but let’s not be fussy, ok?

It’s worth noting that I’m staying off social media until I’ve finished a couple of very important projects. I’m using my brain time in a highly focused manner.

Why? Because the seasons are changing, the barometer is bouncing around like a honeymooner’s pillow, the solar radiation (between eclipse, sunspot the size of Jupiter, and X-class flares) is doing the hesitation waltz ALL over my nervous system, and my otherwise lovely partner is genuinely addicted to TV so I have that constant, impersonal nag grating against my brain.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
If I weren’t so well-equipped with irony and sarcasm, I’d be howling like a princess with a split nail right before her prom date.

So I remembered about my blueberry clove shakes. This reminded me that I need to prepare for the REALLY hard times that winter brings. And that made me think that there are a few principles to keep in mind for my dietary framework:

  • Vegetables. Lots of healthy vegetables.

    I have that covered for emergencies already: vegetable juice with one of those thought-out “super green” organic powders (my choice is Garden of Life’s Perfect Food.)
  • Anthocyanins in ridiculously strong doses. This is key for my brain function. Huge.
  • Something for bad pain.
  • Something for bad pain with a different protein profile, to lower the risk of developing an allergy.
  • Immune support. Winter, right? Virus heaven.

Brains which are under siege need appropriate saturated fats. I know, I know, we’re told they’re bad. Back up a bit and take a look at that, because it doesn’t hold up to closer inquiry. What we don’t need are INappropriate saturated fats, which, admittedly, are most of the ones in the grocery store.

Chocolate, coconut oil, organic palm oil, and pastured butter are appropriate fats. These are well within the kinds of foods we have been eating for thousands of years, if not longer.

One reason why a bite of something fatty is like an instant lift. The saturated fat goes right to the brain’s pleasure centers. The brain knows what it needs, and we’re wired to like it.
glee
It’s up to us to use appropriate forms of fat, which our bodies can reliably use.

When I’m fighting off a virus, I crave raw coconut, coconut oil, coconut butter, or coconut milk with a gnawing passion. I’m old enough to do what my body tells me to. Interestingly, studies are coming to light showing that just the coconut oil has real benefit for fighting off viruses, among other things. Imagine what we’ll find in the rest of the nut, one day.

For pain, I find that half a tablespoon of 100% grass-fed/pastured butter is better than a pain pill. (It cuts the pain dramatically but doesn’t make me goofy at all.) It doesn’t always last for more than a few hours, but there are no side-effects that aren’t healthy: it makes my heart stronger, helps stabilize my immune system, and reduces my tendency to pack on weight. I’ve found this to be consistently true over the years, and, since it doesn’t match our expectations of dairy fat, I checked the science.

For a fairly extensive and science-supported discussion, look here. I’ll provide some highlights.

100% pastured bovine fat, of any kind, is such an effective anti-inflammatory that it can reverse heart and vascular damage. I’m not sure why it helps moderate my weight, but I suspect it has to do with cleaning the metabolic pathways.

Conventionally-raised or grain-finished cattle are sensitive to grain, as a species, so they have ongoing low-level immune responses to their feed (even without the steroids and antibiotics normally used in beef and milk production.)
feedlot-NRCSAZ02094_-_Arizona_(471)(NRCS_Photo_Gallery)
Naturally, the histamine outfall, metabolic garbage, and fats get stored in their flesh, milk, and fat.

That’s how animal bodies work — a lot of stuff gets concentrated in our flesh and stored in our fat, and if what went into us isn’t right, what gets stored in us isn’t right, either. That’s why people pay so much for the grass-fed stuff.

Now you know 🙂

Getting pastured butter is not hard. In Ireland, grass is cheaper than grain, and (unlike New England or Wisconsin) it’s available nearly year-round.

Gorgeous black and white Frisian cows grazing deep green grass with colorful, healthy fields patchworked down to the edge of a body of water.
Breathtaking shot of Irish cows from Richard Webb

Next time you’re at a major supermarket, grab yourself a block of Kerrygold butter and try a slice on some non-inflammatory food, like a dish of steamed veggies.

Go on, try it…

Now you know what’s behind the recipes I’m going to post next.

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Autogenic training — calming the CNS in the nicest possible way

I have to fling this file up onto my site and write the supporting material later. I’m trying to do a lot on very little steam, so forgive my slapdash approach. There will be a readme to go with this next time. Believe it or not, there’s a reason for every single line 🙂

Anyway, this is the (probably) final draft of the first autogenic training script I’m writing for my charity, CRPS: Art & Spirit. It will be read in and turned into an mp3 in the fullness of time, which will also be available under the same Creative Commons license, so please do share.

Meantime, if I say it myself, just reading this is soothing to that frazzled ol’ autonomic system 🙂

Now, let’s see if I can load the whole pdf here… direct link to brain-soothing script

Indirect link to script:
autogenictraining-no1-ver1.2 — Click the link, then click the link again.

NOTE
I’m sorry to say there were some ghastly cut and paste errors in the version originally posted. I posted the corrected version on December 2nd, 2014. This one will flow a lot more smoothly.

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Living without hope – tasks and aftereffects

I lived without hope for years. Years. It was weird to look around one day and realize I had no hope, and that I hadn’t had any for awhile. I didn’t think I was going to see another Christmas… for at least 5 Christmases.
ChristmasTree_NOT
When the few friends who were willing to be honest asked me what I hoped for or what I had ambitions for, I had to tell them that I had no hope and I had no dreams of the future.

They really had trouble with that.

Some just did that weird, head-shaking, “I didn’t just hear that” thing and changed the subject. A few asked if I was suicidal. I had been, and I drifted in and out of degrees of thinking about how to make it painless and permanent if I did kill myself, but I was… surviving.

Actually, I was working really hard on surviving. Hope had been sucking me dry, making me see things that weren’t there, putting my energy into some future I could only imagine, but couldn’t see a way to reach.

If I hadn’t been willing to drop everything, including hope, in order to just focus on the business of living with this horrific reality, I think I wouldn’t have survived. I had no extra energy, and hope was too demanding.

Line drawing of woman flat on floor, with woozles coming out of her head
Image mine. Creative Commons share-alike attribution license 🙂

When I came out of that time, very very slowly, it dawned on me that I had been fighting for so long for my own life that, for the first time in my entire conscious existence, I felt no need to apologize for the space I took up, the effort and attention I required from the world, or, in fact, for anything.

As I told my Mom at the time, “I’ve fought for others’ lives pretty often, and when you’re coding someone, they’re your whole world for the time that you’re coding them.
CPR
“If you fight for someone’s life over any length of time, you come to care about them as well as for them, even if you have nothing else in common. Well, I’ve spent years fighting for my own life, and it’s impossible to fight that long for someone without really coming to care about them. I really love myself, in a solid way, with no caveats, and nobody and nothing can shake that.”

So, I don’t associate hopelessness with futurelessness or lifelessness, as most people seem to do. I have every faith in our ability to face life without hope, because sometimes it’s just dead weight. Sometimes, it distracts us from what’s real.

I have faith in us, hope or no hope. I have absolute faith in our ability to move through the stages of this unbelievable circus we call life, and make them work for OURSELVES in the end.

Faith isn’t the same as hope, because it relies on something that’s present now, not on something that might be possible in the future. I have faith in our doughtiness, an old-fashioned word combining the meanings of nerve, grit, and determination. Boy, do CRPSers have all of that!

In the end, hope is a luxury we can’t always afford. Hoping and dreaming — putting our energy into things that don’t exist — can be a real sink. That is, maintaining hope and dreams can, themselves, take more energy than we can afford.

It sounds counterintuitive to someone who’s never been there, because most people think of hopes and dreams as what pulls us forward.

If hopes or dreams pull you forward, that’s good; if they don’t, reconsider, and maybe refocus.

Refocusing on the sheer present business of finding a way to survive with things as they are right now is not wasted time, it’s not suicidality, and it’s not even an act of despair. It’s profoundly rational, profoundly functional, and even when it’s profoundly difficult, it’s still profoundly worthwhile.

From my own experience, I have to say it’s a strange state of mind to live in, but it’s surprisingly worry-free. False worries fall away as fast as false comforts do. Once I accepted the state of life with no hope, there was no room for b.s., either in my world or in my relationships.

Life simplified itself; all I had to do was keep up — or rather, pare down. That was weird too, because I used to find stuff comforting.

In that utterly simple state, though, it wasn’t comforting. It was just stuff.

Having emotional energy invested in something so … stufflike … was absurd. Talk about false comfort!

So, before long, all I had was what I needed; nothing more, and not much less.
teapot-eaglehaslanded
In time, everything changes, even the amount of energy we can spare. I can tell you exactly when I rediscovered the luxury of hope, because I blogged about it here. It was nothing more than the first whisper, because that was all I could support, but it was unmistakeable.

Since then, I’ve also rediscovered flippancy, ambition, and even toilet humor. (My sense of irony never left, which makes me think it’s essential. H’mm…)

But a few things still remain, deep currents in the otherwise twinkly surface of my character:

  • stuff is good only if it’s useful and there’s room for it;
  • nobody, but nobody, decides when I die but me; and
  • I love myself. I may be grubby, nerdy, daffy, clever, ill-yet-unconquered — but I love myself absolutely, without vanity, and without caveats.

If it took living without hope, then I’m better for having done it.

Aphorism for the day: Don’t be afraid of what life brings you. You never know what’s on the other side. It’s just a matter of getting there.

me-fingers-peace

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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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