Angel wings & tactical things

This morning, I woke up feeling like a butcher knife was lodged in my heart, the memory of barking and snarling voices ringing in my ears. No surprise there; it’s to be expected.

My first coherent thought was, “This needs to be better.” I think that about a lot of things, but this one is mine to deal with.

I pulled one of my tools out of my mental toolkit, and flicked my eyes from ceiling to floor, ceiling to floor. (I’m a side-sleeper.) When I felt an urge to close my eyes, I did. When I opened them again, the butcher knife had shrunk to the size of a stiletto, maybe a medium-sized knitting-needle.

This magic technique is one way of using “bilateral stimulation.” Bilateral stimulation is a way of using neuro-anatomy to manage neuro-chemistry, using your brain signals to heal your mind. There’s loads of material on it in the field of trauma psychology.

Basically, the way our brain processes “sidedness” (the fact that we have a left, a right, a front, and a back) is even deeper than the way it processes strong, primitive emotions, like fight-or-flight-or-freeze. Those emotions tend to disrupt the brain’s normal processing of memory, thought, and decision-making, which can be useful when mastodons are stomping over your village — what you need to do is move faster than you’ve ever done in your life, and not camp on their migratory route in the future.

Most decisions we have to make are not on that order. Even when we live with a brain that keeps wanting to go there, it’s still rarely useful. So, it’s wise to have a few tools that can keep it in check when it’s working “after hours”, so to speak.

One way to do that, which works for most ordinary stressors, is meditation. It gives me practice in creating a still space inside, where I can survey my surroundings, assess things, and choose the best way forward, from this non-triggered space. The “success” of individual meditation sessions is irrelevant to this skill, because it comes naturally as a result of persistently going back to meditation and working on it over and over. Like with many things regarding central nervous system care, persistence is key.

When my skills are toppled over by what goes on around me (cf. my last post! A perfect example of losing it and coming back again), these other tools come out of my “bag of tricks.”

Glancing from one side to another is easy, portable, and requires only some vision and muscular control of your eyes. Pick a spot about 45-60 degrees ahead of you on your left, and a corresponding spot on your right. Flick your glance from one to the other, and back again, not too fast, not too slow. The right speed varies from person to person and time to time. Feel out the point where your system naturally drops to a median, attentive level. It doesn’t feel dramatic or unnatural; I experience it as a sort of a natural pause, as if it’s waiting calmly for something reasonable. Getting someone properly trained in EMDR to teach you what this feels like is really helpful, but you might be able to find it yourself.

There’s a bit more to it: real EMDR training starts with finding, and programming into that deep layer, a “safe place” to go to in your mind; establishing a certain connection with what some call “your wise self”, so you can re-assess your situation and re-evaluate your responses without the triggering; and learning what happens to you, in particular, during the process, so you can self-treat with fewer problems and more success.

Other techniques of bilateral stimulation include the “butterfly hug.” Cross your arms so your hands rest on your opposite collarbones, and tap one side, then the other side. This feels very comforting. It’s not my go-to, because the nerves going through my elbows don’t like bending up that much.

Thigh tapping is widely taught in disaster- and war-related trauma recovery. It can be done sitting, standing, or lying down. Simply tap your legs, first one side, then the other, with the hand on that side. Left hand left leg, Right hhand right leg, back adn forth. The signal demands attention from the brain, which pulls itelf off of panic duty and gets back to processing information and sorting memories in a healthier way.

My physical therapist recently taught me the cross-body crawl. I can do this standing, sitting, or lying down on my back. Reach over with one hand and bring up the opposite knee, then switch sides, back and forth.

This does several things: it provides bilateral stimulation, which calms the panicky system down. It tones the core muscles, especially done while walking! It reminds the brain where the limbs are, which is kind of a huge deal with CRPS, which tends to muddle our brain’s map of our bodies. The cross-body crawl tops my current list of things I wish I wouldn’t do in public, because people look at me funny, but I’m going to do it anyway, because it’s so helpful to me.

I’m also able to focus on nutrition, physically the biggest player in the healing game. I made a green soup last night — Not Chik’n brand bouillon with all the green things I could find in the store that weren’t cabbage relatives (because they push down on my thyroid), and yesterday that was parsley, leeks, mature spinach, celery, and dandelion greens, plus carrots to smooth it all out. I cooked the rather harsh-smelling leeks in butter until the smell sweetened, then dumped everything but the spinach in and simmered for awhile, letting the minerals leach out into the broth. Then I cooked the spinach on top more briefly (so it wouldn’t get bitter) and threw it all in the blender.

As my friend said, “It’s like a chlorophyll bath.”

Meanwhile, as long as I persist in my meditative practice, the work on finding a home charges ahead. It’s a lasting puzzle to the linear part of my mind why an hour spent on meditation makes the other 3-4 functional hours I can squeeze out of the day ten times more effective. I’m gaspingly glad that it does, because it’s a heck of a job to find a safe place for this body.

This cascade of events has carved into my very bones the understanding that it’s meditation that will save me in the end. It’s the axis of my mundi, strange as that may seem to those who’ve witnessed any of my eventful life.

I feel the wings of angels stirring my hair now, and I can’t worry, only take the leap and trust that I’ll fly, rather than fall.

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There’s always an afterwards

This, right after “Keep breathing”, is one of my go-to pieces of mind management. It’s about so much more than consequences. Let’s take an example.

A non-obvious choice

At work, before I got sick, there were a lot of big, well-built guys in the software engineering department, who wrote the programming code that made the business happen. (It was a software firm with a great gym on campus; hence, lots of engineers & muscley ones at that.)

There were a lot of diligent people (almost all of them fit, though few as statuesque) in the QA department, who tested the programming code that the software engineers wrote, and had to make sure it was accurate and well-behaved (yes, code is supposed to be well-behaved!) before it was finalized.

Among the QA engineers was a woman about 4’9″, one of those sweetly scintillating geniuses who didn’t seem to have a temper to lose.

One day, in a meeting, one of the most magnificent of the software engineers learned that something he’d made was not behaving well. He argued the point; this QA engineer calmly reiterated her findings. To my astonishment, he actually stood up, walked over to her, and loomed. I mean, LOOMED.

The entire room (mostly men) held its collective breath. It was out of character for this engineer to be unpleasant, as a rule; and to pick on a woman? Unthinkable.

But his brainchild had been criticized, and he did not like it one bit.

Now, I grew up with two brothers. I also worked as an ER nurse in one of this nation’s hell-holes. I know how this is supposed to go. One person looms, the other bristles, and things get louder, with the (sometimes implicit) threat-level increasing until one backs down.

two tense men, one standing, one curled on his back, pointing guns at each other

I learned that day that there is, in fact, more than one way that this absolutely primal interaction can go.

All 92 pounds of QA engineer peered straight up, neck totally relaxed and head dropped back, at the scowling 180-pound sculpture of irritation and physique, with a mild air of bland puzzlement. It was as if she was wondering if he really thought standing over her changed the facts, and what was the point, which it turned out was exactly what she _was_ thinking.

This image?

big great dane looking down at a little chihuahua

Not a patch on that moment. It was wonderful.

The engineer eventually breathed and went back to his seat. Like the super-smart guy he almost always was, he moved straight on to how to fix the problem.

The afterwards

Given the format of conflict most of us know, the QA engineer should have tensed up and snarled, and that should have turned into a shouting match and disrupted the rest of the day — possibly involving HR and resulting in reprimands for them and hours of “training” for all. That’d make for a difficult, expensive, exhausting, and largely fruitless afterwards. These two worked together a lot, and this could have started a long downhill slide in their work relationship, which would have affected a lot more than their moods.

Instead, the QA engineer stayed on task — she held the larger view of what was needed to bring the code “up to code”, so to speak. By doing so, she gave the software engineer (who, admittedly, shouldn’t have needed it, but we’re all human and make mistakes sometimes) enough mental space and time to calm down, refocus, and get on with the important thing. Which he did.

After that, he did his looming without moving from his seat, which was no more than anyone else did. Their relationship continued to be a little testy, since one necessarily had to criticize the other, but increasingly respectful because they were both so good at their jobs. (They loved each other, professionally, even when they didn’t like each other. Sound familiar?)

I  finally got it

I found my own level of tension dropping after that. Even when the brainstem is receiving hard signals, it’s possible for the cortex to choose wisely, instead of reflexively. Who knew??

My own team of software engineers were more shouty and less loomy, but it sure calmed things down when I could simply wait, relaxed, as they ranted, and then ask — in a calm, natural manner — what to do about it.

waves pouring around a still stack of rocks

It was great preparation for living with central (that is, driven by the brain and spine) pain.

Barely alive

Pain does things to the brain, and central pain does more, worse, longer, and harder. However, pain is not the only thing in my brain. I have all kinds of things there, not least of which is — my mind.

There was a period when I was almost dead (sorry, Mom.) Even getting to my knees was impossible until my body had turned up the volume on itself, which took almost an hour. I was living aboard a sailboat at the time, and the fresh air and gentle rocking did me a lot of good. Not enough, though.

As this period began, I thought about it long and hard, lying there in my berth, desperate to yield completely to the exhaustion but unable to give up on life until I’d figured out the plot. Seriously, that was all that kept me alive: narrative curiosity, and feeding my cat. (Hey, whatever it takes!)

But wait, this gets even funnier.

I mentally reviewed the many adventure movies I’d seen, where the protagonist gets through impossible situations and overcomes unbearable limits by pure willpower, because they choose — over and over — to take the next step or make the next move, however hard it might be.

It popped into my head that almost all of those movies were fiction. “Doesn’t matter,” I told myself. “It’s all right. Some of them were based on fact.” Sure, I’ll go with that!

And so, with Cleopatra (Queen of Denial) riding my back…

sketch of me, splatted, with one fist ahead of me, and a bas-relief of Cleopatra perched on my back

I pushed my pillows aside, planted a fist on the settee coming straight out from the head of my sleeping berth, and pulled forward. God, that was hard. I panted until I could breathe again, then muttered, “I choose to go forward, whatever it takes.” I planted the other fist, dragged myself forward another few inches. Panted, took a breath, “I choose to go forward.” Over and over. “I choose.”

After a few days, I didn’t have to say it aloud every time. After a few weeks, I didn’t verbalize it at all; it was a silent stream of intention. A couple months later, I got hooked up to an acupuncturist/naturopath/homeopath who figured out how to gently draw my shattered system back from the brink, without accidentally knocking me off the edge. (Dr. Daniel Donner in the Oakland/Berkeley area; very highly recommended.)

Becoming super-human, or maybe more fully human

It was around this time — with social media toddling out of the BBS/chat era with its first firm steps, and blogs becoming normalized — that I developed the theory that humans under unbearable circumstances have to become superhuman, and that this is why we have myths — to show us the way past our learned limits. To quote the sainted Sir Terry Pratchett,

It’s amazing how peope define roles for themselves and put handcuffs on their experience and are constantly surprised by the things a roulette universe spins at them.

We are so much more than we think we are, than we have let ourselves believe, than this tiny moment in history and culture allows us even to notice!

As an amateur historian and someone who bounced all around the world growing up, I’ve always had a pretty solid sense that what one time/place thinks is normal, is actually pretty darn weird in the eyes of the rest of reality. (“Eggs for breakfast? But that’s dinner food!” And the moment I realized it was breakfast in London but dinner for me, and so it didn’t matter what I had.)

What I learned a little later is that I don’t always have to blend in. In fact, there are times when it’s best to ignore “normal” and get on with what needs doing.

These days, “normal” is scarcely ever a relevant concept, except as a matter of how to tune my disguise.

I’ve noticed I get better results and am treated better by others when I fall within certain parameters of appearance and behavior — ones that are “normal” either for a nice White soccer mom with arty sensibilities (on the street), or a pleasantly intelligent professional (when seeing physicians & administrators) — so I track myself accordingly. Your mileage may vary — we’re all different — so, try different things and see what works for you.

Back to reality

The point is, even at the hardest moments, and despite intense cultural programming and bitter central pain, it IS possible to choose how to be.

We don’t hear that much, especially from movies, eh? Follow your feelings! Be impulsive — it’s cool! Violence works! 3 days is enough to know someone’s soul! Good people will love you no matter what! If it/they are not perfect, it’s broken! If others disagree, you have the right to hurt them back! Sigh.

In fact, these are symptoms of a traumatized brain. I know — I live in one that’s constantly being re-traumatized. Black-and-white thinking, catastrophizing, blaming, panicking — being totally overwhelmed by huge emotions, forgetting that there is a complex human being in the midst of them, one who HAS feelings but IS NOT the feelings.

This is the un-managed internal reality of central pain: full-on red-alert, a fire drill for an inferno that never stops burning.

Feelings, impulses, drives — they’re information, not commands.

Consciously or not, we choose what to be guided by.

This is why self-management is imperative for us — and why we can be a bit fragile when the pain is high, or we have to think about being sick (like at the doctor’s office.)

We have to work to manage this impossible mess without looking like we’re falling apart. If we don’t succeed, if we simply react the way “normal” people would “normally” react under that kind of stress, we can easily lose everything — doctors, jobs, family, friends, allies, resources, the lot. We have to be abnormally strong to handle abnormally large, abnormally relentless assaults on our peace and poise, not to mention our lives and minds.

This is why being “super-human” is not a bad concept — imagine being a better survivor than X-Men’s Magneto, a cannier manager than James Bonds’ M, as resourceful as Coyote, as implacable as Kronos, as benevolent as Kuan Yin. These mythological models, not “normal human behavior”, may be the only standards that are even applicable to people in extraordinary circumstances.

For people like me (and there are a lot of us, not only from central pain), with a brain constantly under siege from noxious primal signals and in a socio-historical moment aiming to squash the disabled/poor/female/peculiar like bugs, this understanding is transformative, and very freeing: I can’t aspire to be normal, let alone change the world… but I can learn to choose my responses, and if I have to aim higher than normal to do so, there are still models to follow — even if I have to go inch by inch, fist over fist, to follow them.

It takes practice, but it’s possible. As with muscles, our habits of mind get stronger with practice. Of course it takes time, but the time will pass anyway, right?

Catching the wave

The first habit to develop is learning to notice when the wave of emotion rises. That is the sweet spot, right before emotional/physical pain (in all their strangling glory) take over.

That’s the moment when it’s easiest to catch on and remember our larger job of doing well despite everything, the moment when it’s easiest to pick a good “afterwards” to aim for and follow the inner prompts that can lead to it.

I find that the temporary relief of discharging my anguish or rage is absolutely nothing compared to the lasting relief of making things better, one choice at a time. At times, I have to remind myself of this, pause, breathe, and take the time to choose a better response than the first or strongest one that occurs to me.

It’s a constant discipline, rather than a destination; life always has more surprises in store. But I’ve had practice, and those “choosing my afterwards” mind-muscles are in decent shape. If I can get clear of mind-muddling mold, they might get even better.

Hard to do that without being able to catch the moment. It took time to learn to identify it, and when I’m particularly disrupted by pain or shock or toxic exposures — especially toxic exposures — catching that moment can be temporarily impossible.

Given good nutrition and no toxins, though: reaching for a better way to be, comes soon after we learn to identify that difficult moment. It’s a wonderful skill; makes a person very powerful in the wider world, as well as in the interior world of “living anyway.”

I think it also improves my writing 🙂

Beyond the moment

I said earlier that “always an afterwards” was about more than consequences. It was an important part of my getting through what I call The Hell Years. It reminded me that, if I survived this — whatever it was — I’d get to find out what would happen next.

And boy, was that a journey worth making!

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What I did with my summer

I’m aware that I disappeared for awhile. Obsessively focusing on housing and breakup, everything else sorta disappeared.  Here’s what that period looked like, framed around the 3 dimensions of life I always update my doctors on — physical, mental/cognitive, and emotional changes:

June

Physically: holding together with bubble gum and baling wire. Somehow didn’t injure myself with packing, storage, and less and less help with errands.
Mentally: dear gods and little piglets, did I ever get a lot done! Dealing with my own move, identifying resources for nontoxic and used building components, dealing with an identity theft, getting a new provider on board (acupuncture), looking at homes, finally getting an old friend out of a deadly situation and somewhere safe, and still keeping my appointments.
Emotionally: J used his last Saturday here helping a friend. He left late enough on a Monday that we could have a bit of morning together and say a proper goodbye. Best moment we’ve had in a long time. And so, my partner of seven years removed his hugely-wounded self to the other side of the continent, so he couldn’t hurt me anymore.

July

Physically: living in one mold factory, driving in another, and working in a third. Discovered that Borax, vinegar, and hydrogen peroxide are very unkind to auto interiors and soft furnishings. Discovered concromium, and hosed almost everything down with it – twice. Much improvement.
Mentally: bought a house (mobile home in a sweet park, actually – who knew!)
Emotionally: saw a beloved friend from my youth. Woot! After five friends, one by one, sat me down and told me how was going to be, I promised to include my friends in the work of making my home safe for me. Horrifically, one of my dearest and most dependable friends dropped dead. See Taming the Beast for some of her outstanding work on nontoxic self care, mast cell disease (weird allergies), and central-pain management.

August

Old amber-screen lettering showing *TILT* like on old pinball machines

Physically: much stronger than this time last year, but still have exercise intolerance, so have to go carefully. Tried to lower meds to summer pattern, but whoops! Bad idea. Definitely not getting the usual warm weather recovery; so, having a chemically and biologically safe home is more important than ever.
Mentally: flailing, burned out and not willing to admit it. Housemate/hostess pulled my head out of my butt and got me back to pacing, alternating activity and rest. Figured out how to organize the work on my home.
Emotionally: it’s extremely reassuring to be 5 min. from the highways, 10 min. from the store, 15 min. from the hospital, 20 min. from nearly half my regional friends, and have a bunch of sweet-natured busybody neighbors making sure I’m all right. Started opening up my social world, now that I’m here.

Summary

It’s been one hell of a summer.

When I look inside, I see myself as entirely raw, a walking mass of weeping wounds. Naturally, this doesn’t normally show, because I’m a responsible painiac and I’ve had 20 years of experience in choosing what to show, what to focus on in public.

Despite so much wounding, healing is possible. In fact, it’s imperative. It’s what I do.

For better or worse, here I am, still alive and kicking. With staunch old friends, something resembling a plan in place, and one new friend who touches on my past in interesting ways and opens up my sense of an unexplored future, I’m looking ahead again – not as a duty, the job of the living; but because it could be really fun, and how much fun I have is largely up to me.

head shot of blonde woman grinning 3/4 face

I’m outrageously lucky. Yeah, multiple crap-tastic diseases, too little income, too much loss and pain; yada yada, that’s life sometimes. In these harrowing times, kindness, love, and care define my world, and that’s so very wonderful.

Life’s short. Take care of yourselves and each other – and do have fun. It makes you stronger 🙂

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All. That. Love.

Straight into Coping Mode.

From letter to my doctor

Dear Dr. S,

Big stress here: my partner and caretaker went off the rails and has broken up with me. (I’m staying with a friend while he packs and leaves.)

My best response to stress is to work. Being unable to focus mentally, that was outdoor work: small scale yard work. Thursday, an amount of labor that would normally be marginally too much but recoverable, resulted in me vomitting and becoming prostrate for 2 hours and set back in my physical capacity, through the present. Fortunately I did get to that afternoon’s neurological PT appointment.

I also had a showstopping muscle spasm in my left neck/shoulder. I thought the yard work would work that out, but it probably contributed to my collapse.

Physical care:
– PT course has been extended.
– Massage weekly instead of every other week, maybe more, per opinion of LMT when I see her.
– Hot tub spa time. My sense of heat perception is blunted, so will do this with friends for safety.

Savella:
– Optimum dose of Savella stabilizes my GI activity with no or trivial additional nausea. Due to that n/v, I felt it best to back off on Savella, despite the increased instability in life & my neurologic behavior.
– Went from 50+12.5 to 50mg Savella BID, as of Thursday evening.
– Nausea has reduced and ability to eat is returning, not yet to normal but gradually getting closer. Able to keep blood glucose functionally adequate. I attribute >90% of this to stress, while not exacerbating n/v with increased sensitivity to Savella GI side effects.

Zoloft & psychiatry:
– In the lead-up to my ex’s meltdown, I’d increased Zoloft (in consultation with my mental health provider and prescribing PMD) from 50+12.5 mg to 50+25 mg. That remains the same.
– I’m in the queue to see a medication psychiatrist in a couple of months.

Spasms:
– Mg chelate up from PRN to 500 mg BID from Thursday until this morning; however, prodromal twitches starting again, so will continue it BID for now, retest every few days, and keep Carafate on hand if gastritis starts up again.
– Avoiding CNS depressants d/t affect fragility: no antispasmodic p.o.

Pain:
– I’d recently experimented with curcuminoid supplementation, and found that 300 mg of the 95% extract BID (which is 1.3-2x the recommended dose) plus at least 2gm of unextracted turmeric, provides best cost/benefit tradeoff.
– I find that, with the lower Savella, being an hour late with this raises pain levels distinctly, as there’s less pain control on board. So it’s now part of the routine.

CNS care:
– Working hard on emotional regulation, reiki (which really helps me with stabilization), and maintaining activity at a sustainable but persistent level.
– Less diligent about my sleep/wake schedule, which would be an exercise in frustration.
– More diligent about everything else (pill punctuality, mindfulness & “radical presence” practices, taking care of relationships, pacing & activity, diet, toxic exposures.)

All things pass. There will be a New Normal one day.

Over the next few weeks, I’ll figure out how to get my continuing physical & logistical support needs met.

If you don’t mind, I’ll add this letter of mine to my livinganyway.com blog. It’s where I discuss how to handle (excuse my French:) the shittiness of life events atop the shittiness of central-pain conditions.

Hope your summer’s going well.

All the best,
Isabel

Reality bites

So here’s what is really going on…

Notes from paradise

3 days on, I’m realizing that one of the few certainties I once had was that J and I would be together, and if I wound up single it’d be because he died before I did. He loved me so much. SO. MUCH. He bragged about me to his boss as little as 2 weeks before he broke with me. He really wanted a life with me, and affirmed it over and over again, over the years.

He saw my weakness and strength, brilliance and idiocy, beauty and horror, and loved me wholly, just the same. He saw when I needed more help and when, instead, I needed motivation to work harder; quietly, seamlessly, without any fuss, he adjusted his actions and my environment accordingly.

When we were together, we had everything we needed. It was so much fun and so pleasant to be in each other’s company that the world around us sparkled and everyone we met lit up. We were “the elves of [Our] Road,” spreading joy and taking care of things wherever we went.

Our relationship was rather tempestuous from the outside: two strong characters are always going to have some intensity together, and an addict in amateur recovery with a spoonie in pain adds more than a little spice to the mix. Ten percent of it was pretty hard. The lion’s share of the other 90% was delightful. Because we’re both introverts, 90% was also pretty private.

He loved me very nearly as thoroughly as I loved him.

All that love…

Mental breakdown

And now,
After watching everything around his old home turf burn to the ground, raising the level of poison and desperation in an already toxic and desperate area to unfathomable levels…
After sinking into a surly isolation unthinkable until now…
After having to wait 2-1/2 weeks between signing up for couples counseling and actually getting it, which might be the kicker…

He has taken to the idea that he’s homesick and “I have to go back every 5 years”, having left only 3 years ago and visited this past June; and that I, of all people, “amazing” and “brilliant” me, am worth using but not worth being with.

All that love!

Dual diagnosis

This is exactly what untreated mental illness coupled with untreated alcoholism looks like:

  • Love is irrelevant.
  • Joy loses meaning.
  • The diseased story he tells himself is FAR more important than the real world in all its richness and possibility.
  • His own power to shape his life seems fantastical to him — absurd.
  • His power to devastate and destroy seems to give some weird, uncharacteristic satisfaction. I call this “emotional cannibalism.”
  • He acts like mindless prey stuck in the claws of his illness, not like a living human being with good options.

Worst of all, love is simply irrelevant.

All. That. Love.

Irrelevant.

All that joy?

Unthinkable.

All that subtlety of observation and care?

Dead, decapitated, done.

Looking for reasons in unreason

We humans try to figure out what’s going on, to look for reasons, patterns, something to make sense of things. Unfortunately, mental illness — by definition — creates irrational states of being, and addiction is inherently not sensible.

My Magic Healer-Man is even more surprising in his departure than he was in thundering into my life, throwing some of his healing into my hands as he took so much of my healing into his. After all, if we can’t save ourselves, we might be able to save each other — as many of the seriously ill and disabled are well aware.

It was an amazing partnership, in many ways.

All.

That.

Love.

Making choices

In the end, though, we have to take charge of our own healing, even when we’re short on the dopamine necessary to make choices with. When we’re miserable, we have to decide whether misery or healing will drive us.

I tend to do whatever it takes to get better. I could be (much) more diligent, especially when things are going well.

By and large, though, misery is unacceptable to me. Life is too short. (Until recently, that was one place where J and I thought exactly alike.)

But then, I’m not a man. Testosterone is neurotoxic, strictly speaking — a fact that’s hard to find in the literature, and then only when cloaked in caveats and euphemisms. A lifetime of it doesn’t seem to be a great set-up for dealing with the changes in the last quarter of life. … Yet, many do manage it with wisdom and skill.

Look! That was me trying to find a reason, even a demonstrably daft one! Or is it an excuse? Didn’t work, anyway.

We choose what to be influenced by, out of the options and resources available to us. He had great options and outstanding resources here.

I think what I’m struggling most with is the fact that, abruptly, he chose chaos, violence (I know where he’s going), and desperation over love, work, and healing. I do not understand that.

Over and over, my broken heart cries out,

ALL!

THAT!

LOVE!

Some things, there are no answers for. They can only be endured.

I’ll make adjustments, time will pass, and one day I’ll wake up to a New Normal, in which there will be some measure of joy. Hard to imagine, but that’s the way things work.

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Bearing witness — what it is, what it isn’t

I’m a history nerd. I love the stuff.

This is the anniversary of the sinking of the Titanic. I had the dizzying experience of being part of an online re-enactment. (I know, it sounds crazy, but it worked!)

People got so caught up in the re-enactment that there was real heartache over the screams of the doomed and the bitter anguish over lives we couldn’t save, and watching the lights go out one by one. The idea of “bearing witness” was tossed around, but without form, as it often is. I thought it needed clarifying.

Therefore, I wrote the following, in the aftermath. I didn’t trivialize the pain, because who knows what horrors others will face in their lives afterwards. (I can’t even imagine what I’ve been through so far, let alone guess what’s next, and I’m pretty sure I was there.) So, I treated the heartache as perfectly valid — chances are, sooner or later it will be, and we can all use a little clarity at those times.

What I wrote resonated so strongly with so many different people that I thought I should put it here, too. (All these posts are printable, shareable, and linkable, so don’t be shy about sharing.) Hope it helps.

A word to those new to mortality in action…

I was a nurse, starting in HIV care 27 years ago, then Emergency/Casualty, then home care. Then I lost 9 loved ones in 18 months. Then I developed a subtly brutal disease that destroys the body from the inside out, for which the treatments are occasionally fatal.

I have watched a lot of people die.
(pausing for breath, and for the color to come back into the world)
[Okay, moving on.]

There are two ways to cope. One is to shut down and depersonalize, which is increasingly common. As a temporary measure, it’s fine — gives you time to get it together. The humane thing to do, though, is move on from there.

Another is to look closely at where your skin ends and another’s begins, and let them have their experience while you notice that it sucks for them — and you keep breathing.

This is what is meant by bearing witness.

Separating Self from Other allows us to be present while another faces the worst moments of their life.

Knowing that it’s not you dying, or writhing, or what have you, frees you up to stand outside that hell and throw the glowing line of awareness to the one inside it.

That is bearing witness.

I won’t discuss my illness here (check out livinganway.com if you want to see the sunny side; rsds.org if you don’t) but I often wind up in an unbearable state of being. I’m an old hand at looking back at life from the slopes of Hell.

While (keep this in mind) there is nothing anyone can do about my being in an unbearable state, there is only one thing that reminds me there is something beyond it, and all I have to do is get there.

That one thing is a loving look, or kind word, or one of my partner’s frankly feeble acknowledgements of recognizing that my body might as well be burning alive. It’s so small from the outside — but it lights up my world.

It’s a thread of golden light that holds me to life. Just a thread of golden light. But it’s enough.

Bearing witness is not about changing the outcome.

Bearing witness is simply the only possible redemption of these terrible moments.

Redemption is not about undoing anything. It does not change the outward reality.

It changes the unbearable inward blackness just enough that the person who is looking back at you from the slopes of Hell, can find the extraordinary inward strength to keep going until it’s over — one way or another.

You who are well and safe have no idea how important that is, but please, let me assure you that it’s a gift beyond reckoning to do that for another.

Bearing witness to those screams, those unspeakably harrowing last moments — whatever they are — you can’t see their faces change, because their reality is just as bleak right now — but, inside them, they found their steel; they found their peace.

For all those on the Titanic and all those who look back from the slopes of any other Hell, let me say, thank you. You make all the difference.

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Fevers, friends, forgetting, and a kind of freedom

With the kind consent of the friend mentioned, I post the following exercise in “radical presence”, or staying sane in spite of the craziness…

Bubbles of thoughts are rising through the viscidity of my mind, drifting from side to side, now tending one way, now tending another.

Feels like a relapse of that FUO (Fever of Unkown Origin, although there’re more vulgar interpretations of that acronym too) that looked and acted like viral meningitis. This time, I have a thermometer so there’s something I can document. It’s less than a few weeks after the first case, so this is not good.

So far, though, no vomiting!

me-fingers-peace
Awesome! I prefer not vomiting!

While recovering (barely) from the first bout of this, I met with one of my excellent friends, the one who’s going to make decisions for me if I can’t make them myself. We first met during one of the most effective times in my life.

She spent much of the recent visit picking up after me, getting the tea I forgot, making sure everyone got fed — the ideal hostess, really. Too bad that was my job. I was a good small-party hostess at one time.

For obvious reasons, given her impending status as my health care proxy, I need her to be able to tell me how I’m really doing. There was a time when full anesthesia and industrial forceps were required to make anything that wasn’t kindly and flattering come out of her. She’d almost rather lose a limb than lose her manners.

Cartoon of a surgeon with mask and goggles on, head haloed by enormous OR light, leaning toward viewer with scalpel in one hand and chest spreader in the other

So, testing the waters, I asked if she found me a bit daffier and more disorganized than I used to be.

I’m so proud of her. She gave me a somewhat verbose “kind of” … then gave me an eyeball-to-eyeball gaze of love and torture, which I’m pretty sure meant, “It shreds my being to see you like this, but somehow I have to breathe and keep going, and I promise you I will, no matter how hard.”

Such a friend can’t be described, only experienced if you’re insanely lucky.

I rarely look back. There’s no future in it. However, the memories I usually keep firmly in the rear-view mirror haunted me for days, as bright as if they were klieg-lit.

Teaching her to run effectively under the redwoods. She was a quick study, all right. I was getting sick, so the fact that she could lap me in less than a year is probably not something I should feel too bad about.

Trying very hard to talk her out of medical school, which I was pretty sure would embitter her extraordinary sweetness and distort her self-effacing diligence. In the end, it gave her mind and heart a stronger shape.

Researching and working together on user interface guidelines, which made most senior engineers effectively beg our blessing on their designs — as they should!

What it was like to ask my quiet, courteous friend a music question, and have her snap upright, point snappily to a chair, and snap, “Sit.” Then give lively, passionate, 20- to 40-minute illustrated lectures on music theory that enrich my life even now. (I did much the same thing for her health questions.)

On a related but more self-oriented tangent, remembering what it was like to keep over 230 threads of information going simultaneously in my head, switching threads from meeting to meeting and file to file. I tracked the early course of this disease by when the number of thought-threads went down. I was “laid off” when I could only maintain about 90 different threads in active memory. I was crushed by that figure.

Remembering what it was like to run through the redwood glen at dawn, the scenery and birds staging a daily spectacular just for me.

coastal redwood circle seen from base, heavy shadow at bottom, well lit at top

The last walk I took on the mountain tops, when every bit of exercise just made things worse, but I had to say goodbye to the wild open spaces.

view of road on mountain spine of high chaparral and live oaks, motorcycle ahead, other ridges dark purple in the distance
This takes me back to my favorite motorcycle riding route. Bikes were the first great joy this disease took from me. Image by BoltSnypr from Wikimedia Commons.

The curling breezes change direction again.

The wasps are too quiet. I turn my head to follow them and warn them away, and the world seems to slip off its stand then right itself again, and the quiet singing in my ears rises to a sharp chord then slithers down again.

Having a frying brain is like living in a hallucination at times.

Famous photograph called
It felt like this looks.

This post is a little diaristic, but it serves a purpose beyond easing the pressure in my head. You’ll see.

The hundreds of little mercies that keep me going cluster around. The air here is delicious. The trees are fluffing their leaves in the curling breezes. J is quietly rattling around inside, scared in his ignorance of my illness and memories of losses, but keeping a good face on and making sure that I hydrate. The birds are mulling the possibility of rain, but it will hold off a few hours. The sun strokes my head with a long hand.

water_swimminghole-1

I breathe, and the world settles down.

A few days ago, I had a wonderful insight about the way that many bits of my past are getting referenced in the present somehow, and how, rather than highlighting my staggering losses, they fit together in a way that draws me onward.

That’s all I can remember, though. I think most of the ideas poured out of me last night as I sweated with the fever I forgot to document.

Mouse brain neurons, two pairs, stained flame yellow against red background
Even my brain is seeing double after all this fever time. Image by neurollero on flickr from Wikimedia.

Drifting first one way, then another.

Must remember to inhale when getting up. It’s the only way to keep my head from wanting to explode, and clutching it doesn’t really help.

Sketch of brain, with bits falling off and popping out, and a bandaid over the worst

Normally, a good idea like the past-reaching-forward-and-propelling-the-present would come back to me with sufficient prompts. Not the way things work anymore. Once it’s gone, that’s it, it’s gone. I’ve learned that the hard way, over years and years.

However, do I need to remember the examples and details? Or do I just need to remember that feeling of a rising tide lifting my weary, worried ass?

Maina at sunset, with masts sticking up and reflecting down, both water and sky streaked with yellow, orange, gold, and purple clouds

Just because I don’t understand how it all fits together, does it stop being real?

Medicine is real, neurology is real, and I defy absolutely anyone to say, hand over heart, that they really, REALLY understand those. Yet, they are real just the same.

I’ll allow myself to be carried onward by the memory of the idea, even if I can’t remember why it made sense.

For now, it’s time for more lie-down and seltzer.

Small moves. Just like steering a sailboat. Small moves get you where you need to go, without steering wrong. Now, seltzer. Later, rest. Then, we shall see.

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What does it take to seize a difficult life in both hands?

This disease, like time and life, dips and dances but tends to go in one direction. As long as it doesn’t outrun my ability to adapt and amuse, I can put up with that. After all, we’re all born with a one-way ticket, and sooner or later we have to get off the ride. Not all of us get a chance to prepare for our exit, or even get much warning as to what it will be like.

In my first nursing job, on an HIV unit in the very early 90’s, I had a Mexican soap opera star as a patient. He was lovely, in every way.

Head shots of Penelope Cruz and William Levy
If you can, picture a cross between these two. That was this guy. And really sweet, too.

This was his first hospitalization with the disease and he hadn’t found his particular polestar, the thought/idea/perspective that would keep him determined and alive for however long he had. He was a lot of work emotionally, needing much encouragement to keep trying new treatments (and they were very new back then) and to keep eating even when he didn’t feel like it and so forth. He had been in for a long time — over a week.

One day, while I was setting out some medications for a complex patient who needed his meds punctually, and didn’t have time or attention to spare, the soap star came mooching up to my med cart in his hospital gowns (one in front, one in back) and huge, lustrous eyes.

With what attention I had to spare, I thought, “go away, come back later” as hard as I could. Didn’t work that time.

He said, as he’d said before, in the same miserable tone as always, “I’m going to die.”

Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.
“It’s a big weight.”

Up until this occasion, I’d stop what I was doing and gave him a full minute of attention and cheer him up a bit.

I didn’t have a minute right then. I had maybe two seconds. “Everyone’s going to die,” I said, barely pausing in my dosing and calculations.

girl on a flat beach kicking a ball high
“Maybe it’s only this big.”

Long silence next to me. I kept doing my job. (Keep in mind that nurses are paid to dish meds, not counsel and encourage struggling patients. That’s all that the staffing patterns allow.)

Then, in that delicious accent, a voice like the rising sun announced, “You’re right! Everyone’s going to die!”
Stone angel with hands clasped in prayer, standing on a pillar, sun like a glorious halo
I heard him drift back to his room, muttering in wonderment, “Everyone’s going to die… it’s not just me,” and I smiled to myself. I wasn’t usually rude to patients, but it sounded like it was exactly what he needed.

My other patient got his meds on time. So did the rest. At dinner that evening, my soap star sat up and devoured every bite, beaming and bouyant as we had never seen him. I began to see what all of Mexico had fallen in love with. He was discharged next day, full of fight and life again.

Somehow, that brutal realization — that everyone dies, that being doomed to death isn’t special — was what he needed to break the spell of misery that his diagnosis had put him under. He had staggered in a broken boy, and he walked out a free man.
Man_walking_EMuybridge
I don’t understand it either, but it sure worked for him.

Perhaps I do understand, at least a little. My experience with that revelation goes a bit further back, though.

I had a book of rhymes when I was little. Most were delightful,  but there was an old one about a sick little girl that contained the lines,

“Doctor, doctor, must I die?”
“Yes you must, and so must I.”

old engraving of a doll-like child lying down, a grim-looking woman in robes looking down unfeelingly on it, a child skeleton hanging from a pole. So hokey and grim it's funny.
Makes you feel all warm and fuzzy, eh?

I went through a jagged 6 months when I got to grips with the meaning of that (plus, I thought it was a rotten thing to say to a sick little girl.) My mother got tired of assuring me I had never been nearly sick enough to worry about it and, on further questioning, assuring me that she and Dad wouldn’t pop off for a long time yet, and I’d be an adult and able to handle it.

Later, I vaguely remember looking around at a sunlit day, seeing my brothers and friends playing in the sun, the leaves of my favorite tree fluttering in the breeze, and knowing everyone would die one day…
Old Chinese painting of 4 children, in voluminous clothes, kicking a ball around.

…but not yet.

Now, we were all alive and together.

Better grab it! Yes!

A smile pushed up through my whole body, and I went out to play.
glee
I think that’s when I first began to understand the difference between being a spectator of life and being a part of it. That realization was rooted in knowing that it’ll end one day, and I didn’t want to miss out on whatever it had to offer in the meantime.

Perhaps that’s what my remark to my patient did for him; but, being older, he could process it in 6 seconds, rather than 6 months. Everyone dies; but right now, I’m alive!

Cats are masters of pa:ng :)
for lifelong celebrations!

I could be wrong, but I think my insistence on being a part of life is a big piece of my adaptability, not only to this wretched bouquet of stinker diseases, but to everything.

What do you think? I’m curious if there’s a link between knowing death and survival, between a lust for life and adaptability. I’m not talking about Norman Cousins’s ideas of exceptionalism, but of an ordinary, grubby-handed greed to be in this thing called life, warts and all. What does it take to reach that?

This might be the question that shapes our future ideas about adaptation and resiliency.

I’d be fascinated to hear from others on this.

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Burning Mercury and the story of Bathsheba

This was written a week ago. Enjoy…

We’re on an extended camping trip, simultaneously waiting for my broken foot to mend, waiting to find out when we can move our travel trailer into a long-term spot, and figuring out how we are going to manage this relationship over the long term — which involves a lot of waiting. So things are quiet and scenic, but, on the whole, not very comfortable.

I was sitting by the cold firepit, looking out across the sere grass and low hills, in a quiet reverie in a quiet hour. I sent my imagination off to find something utterly irrelevant.

What came back was the sign of Pluto, which approached in a portentous manner —
astrological glyph for Pluto
And, in the sideways manner of dreams, said it was Mercury, which normally looks like this:
astrological glyph for Mercury
Then it grew flames, starting from the ball.
pluto glyph with small flame on ball
The flames spread, and as they spread around the symbol and over it, the symbol came close to me.
Pluto glyph nearly engulfed in flames on top
Closer.

Closer still.

Then it hooked its barbs into my side. It was intrusive as dammit. It poked right into my flesh, as if it wanted to climb in.

Trying to pull away, I said, “What the heck are you doing? What do you want?”

It said, “We need your stories.

I thought of my science writing at my biowizardry blog, and it said No. I thought of my anecdotes here, and it said No.

It waved a few pages of books and stories I’ve half-written and said, “We need your STORIES.”

Oh. The imaginative stuff. Didn’t think that was the most unique thing I had to offer, but hey, I’m a writer … I usually do what the little voices tell me.

So here’s a story.

One day, there was a woodcutter and … no, wait, you’ve heard that one. How about this, and I’m writing it from sentence to sentence, no idea what comes next, so be kind…

The story of Bathsheba

Bathsheba was beautiful and did not know it, despite her luscious name. She wanted little, and got slightly less, but she had a gift for appreciation and made the most of it.

One day, while dumpster-diving (she did even that with grace), she came across half a salmon, nearly fresh, cooked with red wine and oranges. It was heavenly. She was only three bites in when a bully named Tom came by, heard her happy little sounds, and cursed and smacked her away so he could have the rest. He never learned that it’s wrong to hit people smaller than you, especially girls.

She scrambled out in a hurry, but he didn’t come after her, so she calmed down and wandered away to somewhere more peaceful. She was glad she had gotten the three bites, and sat on the curb in the sun, licking her lips and enjoying the aftertaste.

A car drove by, spitting fumes and loud music, and a half-empty can nearly beaned her. She leaned aside to dodge it, and went back to soaking up the sun. It was part of city life — she could tell that they hadn’t been aiming.

Another car pulled up, partly blocking the sun, large and with something sturdy on the roof. She pulled her feet in neatly. The occupants didn’t seem to notice; they were busy talking, sounding uncomfortable and distracted. The one on the street side got out and opened the back up, then returned to the front. The two occupants opened out an enormous sheet of paper between them. A map.

Bathsheba loved maps. It had been ages since she’d been able to just relax and look at a map. Curiosity flashed a fin.

Very quietly, she sidled closer to the car’s rear end.

No reaction from up front.

Very gently, very quietly, she leaned — oh so casually — against the rear bumper.

They were having technical issues: the space was too small to turn the map over in, but they were trying.

Bathsheba put one foot on the bumper, experimentally. The piles of clothing and sleeping gear obscured her view.

Up front, the map turning had not gone well, so there were some knocked mirrors and banged knuckles and bumped heads. The trivial dip of the bumper didn’t even show up in the chaos up front.

She shifted her weight, oh so carefully… just to see …

And, up front, the map tore.

One of the occupants burst into tears.

Bathsheba leaped towards the front of the car, then remembered herself — you don’t just go up to strangers, even if all you want to do is comfort them!

Instead, with wide eyes, she crouched behind the back seat, half-buried by piles of clothing and pillows, her back against the hard plastic side of a cooler, looking all her sympathy, yet terrified of the very questionable position she found herself in. She had absolutely no idea what to do.

The conversation up front shifted gear, from frustration and recrimination to apology and comforting. Eventually, and more or less in the middle of a word, the driver put the idling car into gear and pulled away from the curb.

Bathsheba clutched the clothing under her, eyes now very wide indeed. She definitely didn’t belong here, but the car was going too fast to jump out; all she could do was hold onto the clothing, which she was now half-buried in, and hope with all her might that it didn’t fall out the still-open back.

Some time later, she was startled awake by a thud. The driver had stopped the car and put the back lift-gate down. He apparently hadn’t noticed Bathsheba, curled up among the tumbled clothing. The car lurched forward and took off again at highway speed.

She peered over the cooler and gazed out at the darkening sky. There was a great big wall along the road and city smells blew in through the vent, but not the strong stenches she was used to.

She wondered if being homeless out here was any better than being homeless in the heart of the city. She couldn’t even begin to think of how she’d get back. It wasn’t a great life, sure, but at least she knew where the good dumpsters were, and who to avoid. Mind you, it smelled better out here.

She wanted to cry, and maybe she whimpered very quietly so nobody else could hear, but she didn’t dare to announce herself. She had no idea how she was going to get out of this, but maybe something would go right… later…

With nothing else to do and a short lifetime’s experience of stress under her belt already, she burrowed in and went back to sleep among the strangers’ clothes. They smelled kind of nice, like cotton and lemon and something crisp and soft which she couldn’t name, but felt so at home with.

She woke later to a voice, a nice gentle man’s voice tinged with wonder: “Kate, come look.” It was one of the occupants.

The car was still. The air was full of that crisp, soft smell. The sky was dark, with millions of points of light — stars, so rare in the city. There was a fire burning nearby under a grill loaded with wonderful things. The other occupant got up from her seat by the fire and came over.

The two people looked down at Bathsheba, utterly tangled in their clothing, utterly helpless, and curiously at home.

They didn’t snarl. They didn’t throw cans. They didn’t invade her privacy or try to grab at her.

They just smiled — two kind, sweet, wondering smiles. They looked like they were witnessing a minor miracle, and like Bathsheba was someone they already considered a friend.

Bathsheba couldn’t help herself. The clothes under her fingers curled. Her chest stretched. Her eyelids squished gently closed, then opened again. She purred.

“I think you’re going to like it a lot better out here, kitty,” said Kate.

Bathsheba wanted to correct her, and say her name was Bathsheba, not Kitty. But just then, Kate reached out with two hands and gently scooped her in. Bathsheba felt Kate’s slow, solid heartbeat — thubump, thubump, thubump — against her own soft little body, and melted into joy.

Don’t worry. There will be plenty more science, and plenty more stories too.

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Uncle Peter passes

There are no shortcuts with grief. There’s no trick to it. It just is. It’s just one part of life, different from joy or ecstasy or delight, but still one part of life, and as such, its real purpose is to be experienced.

I thought there was something more, and that I must be doing something wrong in the way I dealt with it. I don’t think so, though. I think it just is.

I was in deep meditation when an image came to me. A dear and excellent friend I meet in my dream-times was standing by me while I burned. He is a profoundly spiritual person, wise beyond reckoning, and always calm.

He was not calm this time. He looked at me in agony as I went up like a torch. There was nothing he could do. I burned away until my flesh was gone, then my skeleton tumbled, still burning, and soon there was nothing but ash.

He fell to his knees among my cooling remains, frantically sifting through the ashes for anything left of me, sobbing great wracking sobs that tore through him like bombs.

He found a strand of pearls, and from them made me a backbone. He and a great bird worked together to build me anew.

I asked him why he had cried. He said, “I didn’t know if we were going to get you back. I knew I might lose you.”

This most enlightened being, according to my subconscious, was torn up and bereft by his young friend’s death. The fact that he subsequently brought me back was not the point. At that time, he was bereaved, and it hurt like hell.

On reflection, I find that freeing. I thought there was something I should be doing differently about bereavement, but it turns out, what I have to do is simply feel it, and then get on with the work.

My beloved Uncle Peter died last weekend. He died painlessly, a stroke knocking him down and out between one breath and the next. Naturally, I keep wanting to call him, and running headlong into his absence. He had a terrible illness all his life, and to combat it, he created a personal life-structure of great simplicity, absolute rigidity, and total decency. He was the most forgiving, truly charitable person I ever met.

He lived in a poky little flat on the cheap side of town, lived on emergency rations and diner food, slept in a sleeping bag on an unwrapped mattress, and gave half of his respectable middle-class income, before taxes, to charities. His correspondence was filled with replies from his letters to legislators and the White House, doubtless written on half-sheets in his very shaky old-man’s cursive, since he was consistent in his habits, and that was how he wrote to me. He would probably see no appreciable difference between the importance of writing heartfelt encouragement to his niece or well-informed thoughts to the White House. To him, we are all under Heaven.

Uncle Peter was an exceptionally good and self-disciplined character, notwithstanding his twinkling share of the family sass. His humility and sincerity always were there, but I never really knew how humble and sincere he really was until after he died and the proof turned up. I can’t emulate him, but I can aim to be better in my own way because I know now how extraordinarily good it really is possible to be, and still live and breathe in this world.

He’ll always outshine me, morally, but I think of him as a Klieg light, illuminating the extent of what is possible. It’s much further than I thought.

I could talk to him about anything, the most humiliating and terrible events of this… interesting life, and his reaction was always the same, utterly sincere every time: “You deserve a lot of credit, you really do. You deserve a lot of credit for dealing with all this and still plugging along.”

I can hear his soft, husky baritone humming the words to me again, as I sit here with a break in my foot and a break in my heart.

And yet, I’m not frozen.

Bereavement is agony. I am in agony (and not just because of the broken foot.) But it’s okay. It’s right and natural. There’s no trick to it, and I’m not handling it wrong. I love Uncle Peter and I can weep for my selfish loss, and when each storm of tears passes, I can get on with the work.

I know he’d approve. He’d say, with perfect sincerity, “You deserve a lot of credit for dealing with all this and still just plugging along.” And he’d go on plugging along himself … shrugging off the most astonishing insults from life with steady calm, advising the silliest and the wisest with equal sincerity, supporting himself in hermetic simplicity, and going on giving.

My uncle. My beacon. How he shines.

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