Humbling invitation

I’ve been invited to ride in the funeral cortége of the man I helped code last week. It’s a semi-public occasion, as he was a semi-public figure (which is why I’ve been cagey about details), so “yes” is not as simple as it sounds.

I seek public exposure the way other people seek whooping cough — every now and then, it hits, but fortunately, it’s rare, and generally causes no lasting damage.

I was silly enough to mention that I have a sub-par central nervous system to the extremely kindly person arranging the event — who was also my CPR partner at about this time last week. He nearly withdrew the offer on the spot, possibly raw over the possibility of another medical event.

It’s a bit strange to have someone else worrying more about my body’s reactions than I do. Kind of refreshing… but definitely strange. This disability has been so invisible for so long — a fact assisted by the sturdy stoicism so many of us live by — that I simply have no idea how to handle someone else’s concern.

To mitigate any need for worry on anyone’s part, I’m preparing for CNS stress on Monday. Here’s how…

I have found, absolutely consistently, that the key to preparing for extra events is all about berries and vegetables. All the vitamins in the world — which I think I’ve tried — can’t do quite as much good as half a bucketful of organic greens and half a basket of good berries per day. I just had a big farmer’s-market-fresh salad; I’ll have kale for dinner, and there’s steamed summer squash awaiting the next moment when I can handle a few bites. Wild blackberries are set for breakfast.

I’ll boost my multivitamins and antioxidants only slightly, since I already take about as much as my body can absorb. I’ll keep lemon balm (for pain flares and dysautonomia) and yerba santa (for nausea and nerviness) in my pockets.

I’ll do extra brain-training, which I’ll talk more about one day, but it’s basically about learning how to calm the central nervous system by sheer will. And t’ai chi. Lots of t’ai chi. Mental practice, if not much physical. I see a couple of Epsom baths in my future, stocking my system up on magnesium and sulphur to buffer this body a bit.

Funerals are for the living, though we think so hard about what the deceased would appreciate. I’m not sure why that works, but it does.

The peacocks left us a glorious side-feather.


It might come with me. It might not come back. I’ll see what it feels like the deceased would appreciate.

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Move slowly, stay happy… except when pushing one and a half to two inches straight down on the lower half of the sternum

We went to a great farmer’s market, where J got me a ceviche tostada that had to be tasted to be believed. I got a flat of outstanding organic peaches to dry for the winter. All this is much easier said than done, because today, for some reason, is pretty harsh as pain days go.

J wanted to know, in his brusque-backwards way, what I intend to do about it.

I replied that I’d probably trim his hair, then lie down for a bit, then watch a silly show, then come help with the wood — which means, bringing cold drinks and looking on admiringly.

I said, “Managing pain days is basically a matter of, move slowly and stay happy — to the extent that that’s possible.”

He liked that. He added jovially, “Used to be more like, move quick so I can get away from people — then I could stay happy,” he said, veteran of a socially hideous region.

We both laughed.


Moments later, we saw people beside the road, one lying down. I saw CPR.


I barked, “Pull over NOW!” J knows my voice, and he’d never heard that tone before. He did. Instantly.

A first responder was doing chest compressions, and getting tired. CPR is incredibly hard work; if Mr. Universe did CPR, he’d tire even quicker.

I got down and planted my less-injured hand on the responder’s stacked palms and between us, we made a strong enough compression to create a pulse in the patient’s leg. This is what you want to do: create an artificial pulse, to sustain the vital organs until the heart itself can be restarted.

The runner had felt chest pains 5 minutes before, according to his workout partner. Then he went over. Just like that.

I won’t go into messy details, but by the time the helicopter was landing and I’d brushed myself off to come home again, I was aware of how strange it was to do this outside the ER, to snap into lifesaving mode from a standing start, and to find myself — without the mental shield of my work-badge and trusty stethoscope — turning away from a still-blue figure and not knowing if he’d make it.

J said of the man behind us, in his elliptical way, “He didn’t look like a jerk.”

I said quietly, “No. He had a really nice face.”

I’m sure he had good medical care. He worked out to keep fit, and had the muscle tone to show for it. He had a bit of chest pain 5 minutes before, then keeled over.

It’s not fair.

I took my clothes off carefully, keeping the dirt off me and turning them inside-out before dropping them in the laundry. I washed my hands and arms to above the elbows. I used to do that on coming home from work, every time. But I’m not able to work, and those weren’t scrubs.

I have some additional prayers to make now, and a body of my own to manage.

I have to move slowly, and stay happy, to the extent that that’s possible. There’s nothing else that could possibly help, because I’m no longer in the ER. I’m a 13-year veteran of the worst pain disease known to medicine, and I helped do CPR today.

I wrote this in the hope of coming to some conclusion that would make it easier to move on from this shell-shocked state of mental mumbling. I haven’t, yet… but let me add one thing.

This man had every chance, once he went down. CPR was started within a minute. The ambulance arrived within 5. He should be getting definitive care within 15 or 20 minutes of hitting the dirt. This is how it’s supposed to go.

In honor of this man who was given every chance, and in honor of my father who never had any, please learn CPR.

Even if your bones are too frail, as mine are, you can still provide the extra push that’s needed.

Even if you can’t risk infection from someone else’s fluids, you can still check for a pulse while others do the dirty work.

Even if all you can do is puff your chair a little closer, you can still direct the able-bodied, because it really helps to have a cool head looking over the whole scene.

Please learn CPR. You’d be amazed at what you can do with it. Those of us with disabilities get too much of the message that boils down to “can’t”, but when it comes to working to save a life, if you know the protocol and what to look for well enough, then there’s usually a “can” that you can go for.

I gave the police my name and number, and I hope to find out if our guy made it. (NB: Details were changed to protect his privacy… but I’m sure prayers and meditations and good thoughts will get through just the same.) I’ll post a comment to let you know.

In the meantime, here are a few links.

My ANS is going to be vibrating for awhile. I’ll start with lemon balm and see what else I can remember to do.

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T’ai chi and emotional pain

When I’m out in the world, my reflex is to shove grief into a bundle and push it aside, and try to act as if I don’t feel it.

It’s always surprising how much energy that actually takes. When I’m doing anything else that takes much effort, it’s nearly impossible. It makes me forgetful and clumsy, just like a pain flare.

When I was at t’ai chi class yesterday, shoving and pushing one way with my mind while I was shoving and pushing another way with my body was so exhausting that I was wringing wet with sweat. Then I remembered something I’d tried briefly before, and decided to try it for the rest of the class.

I mentally drew the grief into my whole body. The grief turned to sadness and stretched out into every muscle fiber, every moving part. And I did t’ai chi with a body that was swarming with sadness.

It was, above all, peaceful.

I certainly wasn’t as tired. The sweat vanished as if by magic. I don’t even remember it drying on me.

The important thing is, I wasn’t expressing sadness in any deliberate way. I didn’t move more slowly, or try for any effect. I moved more deliberately and with better focus, because I was integrated. My body was filled with sadness, and I moved that body through the t’ai chi form.

The point of t’ai chi is to clear things up, straighten out what needs straightening, and separate muddled body parts and muddled energies into their proper alignments. Therefore, the sadness got a heck of a massage, and by the end of class, it was like it had been processed into something more wholesome. There wasn’t nearly as much sadness, as such. There was a lot more peace. There was a sense of strength I can’t put a name to.

I must add, as a footnote, that it’s been a long time since my feelings were capable of unshadowed joy. I have learned to cultivate a certain shallowness of mind at times, so I can be insulated from the deeps and be simply happy in the moment.

Therefore, when I say that I was happy as I left class, understand that it was a deep happiness. The shadows were very much a part of it, but that was fine. They were in the right place.

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My guts are gallivanting

The past few weeks have been… interesting.

Oh, dear.

I seem to have gastroparesis, because after every bite or two of food, I felt like I’d swallowed a cannonball, I’d still taste it up to five hours later, and even the thought of food made me nauseous.

At the same time, I seem to have wasting syndrome, because the other end of my GI system was working double-time and overtime. I was exploding on the toilet long after there was anything to explode with, whether I had eaten or not.

Toilet stall with graffiti covered with brown, yes, brown paint
It’s not what it looks like…

The weight loss has been a boon to my knees and hips, but the ground-in weakness is annoying.

The usual treatment is a “low-residue” diet, a shameful pile of poor nutrition and monotonous eating, consisting largely of things that I’m allergic or sensitive to — and steamed vegetables, which I can usually eat by the plateful, but can now barely manage a bite of, they’re so heavy with water.

I thought it over.

The Thinker, Auguste Rodin
Rodin’s “The Thinker”, looking very apt.

Both gastroparesis and diarrhea indicate an intestinal lining that is starving for antioxidants, and probably inflamed. Therefore, anything I eat is going to have to have antioxidants, because that is first-line treatment for tissues starved for antioxidants. Many antioxidant-rich foods are anti-inflammatory, so it’s useful for me to lean towards those.

The sluggish-to-trudging pace of intestinal motion, or peristalsis, is liable to under-stimulate the release of digestive juices, so anything I eat had better be easy to digest — or, better still, partly digested already.

Since I could only eat one or two bites at a time (and still feel rather ghastly afterwards), every single bite — in terms of both nutrition and flavor — had darn well better be worth the trouble of eating it!

Woman with eyes closed about to bite a cherry
Fabulous cherry by Jiri Ruzek.

I’ve been interested in good food since forever. My mother has been an outstanding cook all my life, and time spent helping in the kitchen was never wasted. She’s always been good at shoehorning a bit of extra nutrition into something in a way that improves the flavor. Dad would eat anything, so failed experiments were never wasted.

Because of my upbringing (traveling widely with a good cook on one side and a walking disposer on the other) I’m a fearless cook and a promiscuous eater, happy to try anything from anywhere, as long as it’s good in both senses of the word.

Earth with Place Setting. Photo of formal place setting from Hopefulromntic, images of Earth and Moon from NASA
Photo of formal place setting from Hopefulromntic, images of Earth and Moon from NASA.

On my sudden return from abroad in 2006, terribly weak, badly sick with CRPS, and having my heart broken in umpteen pieces by the most traumatic, trouble-ridden, devastating trip of my entire life, I found sanctuary with my friend L and her family. It took ten days even to notice which end was up, but then L said, as I snacked on something homemade from a jar, “It’s normal to eat a lot of raw food when your system has been deprived for so long. Give it another week and your appetite will get more normal.”

I considered being embarrassed, but I was too busy absorbing the impact of what she had said. I had heard her talking about “raw food” since I’d arrived, and I understood it meant cold-processed food that was carefully jacked to boost its nutritional value and digestibility.

I didn’t realize I was devouring it on an industrial scale.

backhoe, by Antti Leppänen
Veggie-loving backhoe by Antti Leppänen.

Knowing what I know now about the devastation at the cellular level that this disease can wreak — and the depth of disruption that even occasional trauma can cause, let alone a relentless, months-long parade of traumas — I’m not surprised. At the time, I found my attention sinking deeper and deeper into my body, and noticing a curiously profound ravenousness that only L’s un-cooking seemed to satisfy.

It actually took four and a half weeks… of grated beets lightly marinated in balsamic vinegar; young spinach dressed with fresh lemon juice and flax oil; pepitas dried with tamari and spices; crispy sesame-kale flakes; yogurt made from sprouted cashews; homemade nut milk; juice from apples picked an hour before they met their fate; tomato-leather from the garden’s surplus, stowed in the deep-freezer to make tomato paste and soup base in the winter. It was a feast of discoveries, or a discovery of feasts.

feast of beautiful food, most of it raw
Beautiful feast photo by Incase.

At that point, L asked if I’d mind kicking into the grocery budget. (I turned bright red, smacked my foggy forehead, and started taking my turn at the grocery store.) I did my feeble best, but I’ll never be able to pay back the real value of what they gave me, in terms of sustenance for the body, balance for the mind, and stability for the soul. L let me know when she had had enough of gratitude, so at this point, I just do my best to pass it on.

I recently replaced my blender, as the old one was blowing smoke, and I got a dehydrator too. In light of my nutritional status, I put them to use.

Here’s an example of the sippy-cup-sized shakes that I make in the blender…

Blender cup with ingredients for small, mostly raw, shake next to it.
My mini-shake makings, with an aperitif of bitters to get my gut to gear up.

… and the partially re-created flax-cracker recipe we’d invented all those years ago — the ones that smell like hot-dogs and taste like junk-food, and have more minerals and omega-3s than you could shake a Triscuit at. Mine aren’t quite hot-doggy yet (I used a lot of sesame), but they are, wow, really good just the same. Especially with a touch of grassfed butter, when they’re out of this world.

Homemade flax-sesame cracker, with grassfed butter. Mmmmmm.

It has been almost 3 weeks, and I can finally eat a small meal once a day without significant repercussions. Also, I can be more than an hour from a toilet without fearing for my trousers.

I’m so far successfully denying the fact that the endocrine shenanigans of this disease have made it so that I can’t drop this excess weight unless I’m literally starving. I don’t think I’ve gotten above 1,000 calories per day more than 3 times since this started.

I’ll think about that later. Right now I have a sliver of raw goat-milk cheddar and a sprouted sesame-flax cracker waiting for me.

baby goats under their dam. One goat looking at us, one nursing.
Cute kids from Fir0002.
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