Start with, “Never give up. Never surrender.”

“Never give up. Never surrender.”
-attributable to:
Leonidas of Sparta, Jael the wife of Heber, Alexander the Great, Queen Boudicca, Mary Magdalen, the Prophet Mohammed, Hildegaard of Bingen, Vlad the Impaler, Queen Isabel of Spain, Geronimo, Copernicus, Marie Curie, Winston Churchill, Aung Suun Kyi, Terry Pratchett, the 14th and Final Dalai Lama…

Rest and retreat, yes.

Pause for thought, please (unlike some of those listed above.)

Knowing when to acquire a sense of proportion, ideally (again, unlike some of those listed above.)

But… don’t give up. Don’t give your rightful self away.

It’s always been easy for me to be determined, but not easy to pick the right things to be determined about.

  • In my 20’s, I wanted to save the world.
  • In my 30’s, I was willing to work only on that part of it that wanted my saving.
  • In most of my 40’s, I was dying — sometimes by inches, sometimes by yards — and couldn’t quite save myself.
  • I’m 50; what a relief!

Given that trajectory, it’s no wonder that my priorities have shifted a little.

I figure that, as long as I have working pulse and respirations, I’ve got a job to do. (I suspect everyone does, but I could be wrong.) My particular job is to re-possess my physical self, and, given enough slack, help others to re-possess theirs.

me-fingers-peace

Our bodies are not just machines, despite the inherent dis-inheritance proposed by Descartes (considering the body a separate entity from awareness), and the even more extreme model funded and fomented by a slightly misguided Hearst (who fell in love with interventionism, and drove the mechanical-problem-to-be-fixed model of medicine over the shifting-dysfunction-to-right-function model of medicine.)

old_school_surgeon

Bodies are the media we experience life through, the means we have to respond with. Despite the relentlessly shallow concerns over appearance the media saturates our lives with, our fundamental experiences of life are not just seen. Life is an all-body experience.

Still looking for attribution info for this glorious image.
Still looking for attribution info for this glorious image.

Bodies are marvelously self-aware organisms on an enduring quest to care for and maintain themselves by communicating as effectively as possible within themselves, and responding as usefully as possible at every level — within the cells, between the cells, from cells to organs and back again — with the marvelously alert circuitry of the nervous system and the dazzlingly subtle chemical dance of the endocrine system drawing the whole show together.

That’s a bit more complex than just meat-sacks wrapped in hide.

circulation-allbody-Anna_Fischer-Dückelmann_1856–1917

I’ve been mulling the twined facts that my body is an amazingly tough, brilliantly adaptable organism, and at the same time, is an organism constantly under sieges both subtle and overwhelming. Yet it never stops trying to find a useful set of responses, it never stops signaling and listening.

It never gives up. It has never surrendered.

I admire that.

More mantras

Just for grits and shins, here are a few other things that I mutter to myself over and over.

  • C’mon, you can do it.
  • Motion is lotion.
  • Use it or lose it.
  • Change or die.

That’s quite a set, when I look at it laid out like that.

Not all of them are cheerful. Sorry.

They’re all thoroughly grounded in my reality, though, and they all have had something to do with my getting this far. They are hammers and screwdrivers in my mental toolkit of radical presence, pushing back on neuroplasticity, and not settling for what this disease would leave me.

Naturally, I say these things to myself in tones of firm, loving parental authority, since it’s all about re-re-plasticizing my brain, and those are the tones it responds to.

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

FTR, I’m sincerely glad it responds at all. When I was in nursing school, they told us adult brains were fixed for life. I doubted that from the start, and events eventually caught up with my skepticism. Brain plasticity FTW!

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Isy’s guidelines for taking care of relationships when it’s imp-possible to have them

Relationships can be so fraught!

Add to that a disease nobody understands without years of serious effort; unbelievable pain; weird deficits (sound volume? Vibration? Time in the shower? Crowds and excitement? How weird is it that that stuff can make us so much sicker, eh?); forgetfulness; loss of perceptions that tell us about social cues; distorted sense of touch; and above all the improbable wobbles, waxing-and-waning, and variations in every dimension… and we could have a recipe for disaster — and occasionally do.

I’ve lost a job, some hard-earned professional respect from my peers, an excellent friend in the making, and several medium-close friends whose presence I still miss, due purely to the effects of the disease.

Kinda sucks, eh?

And I’m definitely one of the lucky ones!

Over the years, I’ve developed a handful of personal guidelines. Key to every one of them is this: I’d rather be effective than right.

What does that have to do with taking care of relationships? (Yeah, kind of a trick question. I can hear many of you shout, “Everything, duh!”)

Life is not fair, this kind of illness is not fair, and there is nothing in this world that can make it fair. Being sick like this is just fundamentally wrong, a vile distortion of life and of fairness — but that doesn’t mean I no longer have a life or that I lose my own sense of fairness.

That, folks, is where the real power of “living anyway” comes in — of doing the imp-possible with character and flair. Life is not fair, but I can still be generous (when it’s reasonable), and to heck with the unfairness anyway. This disease is vile, but I can still be pleasant (most of the time), and to heck with the vileness anyway. Imp-possible WIN!

So, here is my list of personal guidelines for tending the relationships that matter:

1. Nobody shall be worse off for helping me.
Corollary: Be truly grateful, without groveling, when they do.
Reminder: This trumps short-term survival. If I let someone be worse off for helping me, things get very bad very quickly. Don’t go there, ever again.

2. My problems are my own.
Corollary: Help is precious.
Reminder: Treat those who give it accordingly.

3. No, normal people don’t understand.
Corollary: Nor should they!
Reminder: Bless those who try; they are gold.

4. It’s hard to reach out and stay in touch. Do it anyway.
Corollary: The payoff is worth many times the effort, over time.
Reminder: I feel better after hanging up than I did when I was dialing, ~90% of the time.

5. People say more than they can do, not less.
Corollary 1: Don’t believe them when they sound generous.
Corollary 2: Believe them when they state their limits.
Reminder: Be grateful for the more painful information, and courteous about the generous lies. This has led to more subsequent real help (mostly from the curmudgeons) than anything other than #1.

6. I could be wrong.
Corollary: I might not be.
Reminder: Is that what matters?

7. Every New Year, think over two things for the coming year, because these are the only resolutions that matter:
     i.  What do I need to work on to take better care of myself?
     ii. What do I need to work on to take better care of my relationships?
Corollary: It’s okay to make the same resolution as many times as necessary.
Reminder: Celebrate having made another year!

I’m not kidding. I really do all that. It’s a constant practice, of course. I have to constantly check and recheck and remind myself of each thing on the list, especially if I’ve been slipping. The point of a practice, of course, is that it’s a work in progress — like life.

It takes a lot of humility to abide by these guidelines, and, believe me, humility doesn’t come naturally — I’m genetically wired for its opposite. (You should meet my folks: gifted, glorious, hilarious, adorable, and unselfconsciously smug, every one of them!)

Having said that, the value of what comes from the humility sure is worth the effort, even though it’s overwhelmingly difficult at times.

I intended to go into these guidelines in more detail (explanations, expansions, maybe a few links to science articles to back up an assertion or three), but I find I’m running out of steam and don’t want to leave this theme — again. I’ve got several drafts with a similar title, and couldn’t hammer any of them into shape for a post.

The brutal challenges we have with maintaining relationships really need to be addressed (however brief this is, it’s still something), so you might as well dig into this and comment on what you think about this, what guidelines you’ve come up with for yourself, why you think these might be valuable or not. I love it when you share your thoughts and experiences here.

There are two things I wanted to discuss, which I’ll just drop here and leave for further comments and conversation.

  1. Taking responsibility is not the same as taking blame. This is a very powerful idea. (It’s okay to say, “I’m taking responsibility. I’m not interested in blame.” This shifts focus for everyone involved.) This is particularly important in relation to #1, 4, and 6.
  2. Everybody has their limits. My relationships only work and grow when I respect others’ limits, whether or not they can respect mine. (I can’t do anything about them, but I can do something about me. Moreover, when I give them this slack, people tend to move through their mess and become more considerate in time.) Particularly relevant for  #1, 2, 3, and 5.
  3. There’s always an afterwards. I developed these guidelines in light of what tended to leave the most useful “afterwards”, because I intend to be around and continuing to beat the odds for a long time.
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Talking about CRPS with boundaries, perspective, and joy

I’m going through one of those periods where I’m just tired of my body hurting.

This is one of those offhand remarks that makes fellow painiacs nod understandingly, offer a kind look or emoji, and move on, but it makes normal (-ish) people with good social skills cringe and stops the conversation in its tracks.

I don’t want to make nice people cringe, and I don’t want to kill the conversation. I was recently reminded how hard it can be to avoid that while answering “how are you/what have you been doing” with any honesty. In fact, I find myself talking about most of the past 20 years in terms of not getting dead.

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

I think that’s a hoot, because it’s so improbable and so much against my initial setup and programming. (I have a truly dreadful hangman’s humor.)

Needless to say, most people think it just sounds grim.

My setup and programming

I’m the offspring of a diplomat and a working artist, well-traveled and extremely well-educated, Seven Sisters undergrad… until I went off-road and became something totally bourgeois and practical (a registered nurse) and, when my immune system conked out for no apparent reason, went on to become something nouveau and nerdy (a writer documenting high-end programming software.)

It was a sweet setup: good brain, strong body, great start to a useful life, good plan B when plan A failed.

Eventually, this promising start led (via surgical complications, neurological disruption, extensive worker’s comp and SSDI abuses, failures of care and denials of treatment, tediously protracted near-death experiences — a term I’m longing to refine — and years so close to utter destitution I refused to look at dumpsters because I knew I was not far from winding up in 2 or 3 of them simultaneously, like the other invisibly disabled woman of my age, build, and coloring who landed on the streets of Oakland) to my utter destruction as a professional entity.

Lead-grey statue of dark angels swooping down from the sky

That was definitely not in any of the scripts my life was supposed to follow!

My childhood friends now have their own businesses, pocket palaces, successful careers in the arts (most), policy/diplomacy/public service (some), and STEM (a few), and in raising children with little concern for whether they can feed them. I’m deeply relieved and happy for them, while realizing that my own life-path got so completely hijacked I have no idea what I’d be doing if it hadn’t been for this.

I bet I’d be complaining more, but I’d be doing more too. I wouldn’t be hurting this much for decades, if ever, and even then, only if I had terminal cancer.

Image from the Australian RSD syndrome support group, Oz RSD Forum
Terminal cancer can be a 50.
Image from the Australian RSD syndrome support group, Oz RSD Forum

Which brings us to a key point: to discriminate against the disabled is to discriminate against your future self. We’re all getting older; with more lifespan come more proofs of mortality, which include reductions of function, stamina, mobility, and even memory and reasoning.

These, folks, are disabilities, and either they will happen to you or you will be a premature death statistic. There’s no third option.

This is why, when you discriminate against the disabled, you discriminate against your future self — and all those you love.

I wish legislators had the humility to remember that. Perhaps you’ll remind them… Find yours at www.usa.gov.

Where was I? Oh yes.

Pathetic? No.

How do I talk about the last 20 years, especially the last 15, with a person who hasn’t spent an appreciable part of life dancing with Death and occasionally taking the lead?

Old-timey line drawing of a skeleton with fiddle and snake dancing absurdly with a woman trying to look away.
She looks more embarrassed than anything. Makes sense to me.. From openclipart.org.

How can I convey how incredibly marvelous it is to have a minimum of 2 functional hours — consecutive hours! That’s thrilling! — nearly every single day? And yet, I used to work 10 or 12 hours at at time for preference because I loved immersing myself in the work.

In comparison to that, isn’t 2 hours pathetic? Especially because I did very demanding work, and 2 hours of noodling around in the yard or walking around downtown really doesn’t compare.

It makes me realize how long it’s been since I even thought about the razor-wire-bound memories of “how I used to be” and “what I used to do.”

I compare only as far back to 2008-2012, the pit of the pit, the nadir of my existence.

Detail of a Bosch painting. Whiskery demon holding and reaching for a misereable man.
Bosch knew.

Compared to that, I’m fantastic! Being fantastic is a great thought!

Being at maybe 10% of my youthful vigor is actually amazing, because during that time, I went from being so close to dead it took 25 to 30 minutes to drag myself, fist over fist, all 6 feet from my bed to the other end of the settee, to feed the cat in the morning. I think that level of function (or nonfunction) is a percentage of my youthful vigor that’s several digits to the right of the decimal. It felt like a negative number, that’s all I can say for sure.

There’s nothing I can do about the past, only the future. That’s not pathetic, it’s just life.

Actually, I feel that way about most of this chronic-illness gig. It’s not pathetic, it’s just life.

The power of “use it or lose it” as a tool under your control

The trick to living with chronic illness is twofold:

  •  Figure out what it takes to manage your illness without letting it take up all your focus. It does not belong in center stage, or not often anyway. Life belongs in center stage. Figure out how to make it so.
  •  Figure out how to have a routine, some sort of rational approach to every day. It’s all too easy to lie back and let the world go by. Speaking as an old nurse, I know the immovable truth of the old adage, “use it or lose it.” Having a routine stabilizes the body’s coping mechanisms; knowing what to expect soothes the central nervous system and simplifies healing. So, make a routine; decide what happens next. Make yourself do things, alternating activity and rest. Use your body, use your mind, rest, then use different aspects of your body, different aspects of your mind, rest, and so on.

These two strategies allow me to make more room, more time, and have more attention, for joy.

Joy is not a luxury; it’s essential to proper function.

The gut, brain, immunity, everything, are worse off when there is no room for joy. Whether I can appreciate my partner, the sunshine, a lolcat, whatever, I grab each opportunity for a shot of delight. I call those bursts of joy “brain juice”, because they boost useful neurotransmitter patterns and, cumulatively, reduce my pain and improve my function.

Bit by bit, even as age creeps up and new issues arise, I find myself better and better able to make use of what I still have. In fact, over the last year, with safety and sanity finally framing my existence, I’ve regained an amazing amount of function. I’m so pleased! (Oo! More brain juice!)

I still don’t know how to explain this to a normally healthy person without sounding like something from another realm of existence.

Different is probably fine

Perhaps I am from another realm of existence.

I’m certainly from another realm of experience; longstanding profound illness is special like that.

Perhaps I simply need to get over this idea that, just because I’m back home or just because I’m talking to someone who knew me when I was an arrogant young jerk and saw beyond that to someone worth liking, I should fit in with them.

Perhaps I should have more faith in myself to be interesting and likeable enough to shine through even the CRPS. I clearly shone through the old arrogance and jerkiness, somehow.

I’m far less confident, eloquent (in person), and humorous — at least, less intentionally humorous — than I was in my 20s or 30s, but I’m a whole lot more confident, eloquent, and (occasionally intentionally) humorous than I was a few years ago.

So, I need to remember to keep my focus relevant, and not think too far back.

Emotional boundaries: My pain shouldn’t be your pain

There’s a trick to disclosing without wounding, even when what you’re disclosing is tremendously difficult. Good boundaries are key.

You may have noticed… people tend to pull away from pain. It’s an ancient reaction that happens in the most primitive parts of our central nervous systems. That means, when we’re too raw about our pain, others may pull away from us because that primitive response combines with their emotions around pain, and our pain makes them hurt emotionally.

I remember how I used to open with the idea that my pain is my pain and others don’t need to imagine it or take it on.

Sysiphus looking miserable as he pushes a rock up hill... with poor body mechanics.
We each have our own load. I’ll keep mine; it’s my job.

This approach of “it’s not your pain, so let it go” frees many people up to re-engage from a rational distance which works for both of us. It’s important to give others the distance they need, because then they don’t feel a need to pull back further to protect themselves, and can stay in contact. They don’t feel driven to pull away from all that pain.

Each of us, well or ill, has to carry our own load, and really isn’t equipped to take on others’ loads as well. I try to remember that and respect the loads of others. It usually works out well.

Come to think of it, it’s essential to relationship maintenance.

Taking it on vs. bearing witness

When I was a nurse, I dealt with harrowing human experiences all the time. I could handle it with real care, and go back next day and do it all again, because I was clear that my load was my load and their load was their load, and the most healing and empowering thing to do for another person is to bear witness to their struggle without trying to take over. The one with the struggle is the one best qualified to find their best solutions; having that implicit faith in them, I found, is tremendously powerful.

For those of us in dreadful situations, we don’t get to choose the reaction others have to our struggles. All we can do is try to back-lead, essentially, guiding them tactfully to a more comfortable position.

Allowing well-intended people to bear witness in a safe way is a natural outlet for the sympathy and compassion evoked in decent people. Letting them get sucked into the awfulness doesn’t help anyone.

Put that way, it’s a lot more clear to me. It’s another form of radical presence/radical acceptance, a mental tool which boils down to, “Things may suck right now, but here I am, it is what it is, and this will pass.” Try it — you’ll be amazed how much mental energy it frees up.

The approach for discussing my illness with others may go more like, “It sucked then and it sucks now, but the worst suckage is behind me, it gave me great opportunities for growth and I took ’em. At this point, I’m better at looking ahead than looking behind, and hey, I’ve got interesting projects going…”

So, first I should clarify the needful boundary between my personal load and the rest of the world, and then I can discuss all this with some detachment from the gluey-ness of remembered distress, unbelievable losses, and intransigent pain, and best of all I can point the conversation towards something much more positive.

I’m still not sure exactly how to do that, but I’ll practice.

I’m definitely better at looking ahead!

view forward from deck of sailboat. Mainsail on right, jib on left, Marin headlands and Golden Gate visible between.
Image mine, share-alike attribution (livinganyway.com) license, C.2015 🙂

Well, I don’t know about you, but I feel a lot better about this already. I’m grateful for your company as I figure out my rubric for yet another tricky twist of the Rubik’s cube of life.

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Doctor appointment optimization

Here’s my Doctor Appointment Optimization strategy. This is especially important for new diagnoses, new doctors, and any significant change or comcern you have.

– Between now and your appointment, keep a pad handy and note down anything you want to find out when you see the doc.

– A day or two before the appointment, set up your documentation. Lay those questions out so you have room to write the answers (in printout or on a notepad, whatever works for you.) Also, if it’s relevant or might be helpful, make a current Snapshot to show the doctor. Make copies of whatever science articles or studies you want to share.

– If it’s a first appointment with a new doc, also print out your current Timeline and previous Snapshots so he or she can absorb your info more accurately and easily. Put them where you can be sure they’ll go with you to the appointment. (Consider faxing them ahead of time, with a cover note asking to have them put in your chart. The doc can then review them ahead of your visit. There are benefits either way.)

– Let the doctor lead the appointment, because they find it easier to be forthcoming, but let them know you have a list to check against before leaving. They like that balance as a rule, because they want your need for info taken care of, but need to feel free to do things their way too.

– It’s your appointment. It’s their job to do you, and your case, full justice. Ask, and keep asking, until you feel you understand the answers.

– Write everything down, because the brain flips a switch when you leave the office and it’s amazing what you can forget.

– Get as many relevant printouts as possible before leaving.

– This is key, an enormous time saver in the long run: Go over your notes and handouts once you’re out of the office but before you pull out of the lot. Just take 5-10 minutes to sit down and go over everything, complete unfinished sentences, tie things together, fill in details you didn’t capture right away.

– When you get home, put your stack by your chair, get something to drink/eat, recharge your brain.

– Pick up your stack, pull out your computer or a pad, and put everything you’ve learned and acquired into a plan of action.
What are the most important things you got out of today?
What is the next thing to learn?
What is the next thing to do?
Are your next tasks and appointments on your calendar yet? (If not, do that. The ‘overwhelm’ tends to short circuit common sense. It’s pretty normal, so you might as well plan accordingly.)

– Once your calendar is updated, your to-do list is laid out, and you know the keywords you’ll need for further research, you’ve digested the appointment pretty well. So, get out your Timeline (which of course you have, or, if you’re new to having a chronic condition, you’re about to start) and fill in a new row.

The point of the pre-departure review is twofold:
1. It gives your brain exposure to the info outside the office, after that switch flicks in your brain, but before the info in all its rich detail gets dumped from your short-term memory.
2. With that second exposure helping secure the wealth of detail, it signals your brain to start working on creating networks between the new info and older info. This not only helps put your own situation in perspective and improves your base of knowledge, but it sets off a cascade of subconscious activity of a very helpful kind, destressing the situation and helping you get on top of your condition.

If this looks a lot like great study skills, there’s a reason 🙂 Chronic conditions require study so you can make better decisions on the basis of better understanding. This is definitely, fully, 5-star, hayull-yes, one of those things where the upfront additional effort (which honestly is pretty trivial) pays off a million times over downstream… in easier life changes, less trouble over choices, fewer complications, more time to spend on having your real life.

Speaking from way too much experience, it’s worth it!

May all your appointments go well and all your doctors be excellent.

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My gut has a mind of its own

I take good care of my brain. I work hard at learning more all the time about how to support and foster it in spite of this tedious collage of illnesses. Neurology interests me — always has. Now that it’s so personal an issue, it’s positively compelling. Neurology’s very complex, and hooks into everything — fascinatingly fractal, in the way it repeats the same physiological “phrases” to very different effect in different parts of the body in response to different changes.

I’ve been wrestling with my gut this past year or so. Lately, it looks and feels like someone’s taking a bicycle pump to it and bringing it up a little more every day. When it interferes with your breathing, that’s a lot of bloat!

I’ve found the gastrointestinal (GI) system to be a bit of a trial. It’s very complex, and hooks into everything. There’s no getting away from the endless iterations of its main roles of sensing, transforming, processing, and discarding: at the intracellular level, intercellular level, endocrine level, organ level, and so on.

Some observant part of my brain notes that the same characteristics I find appealing in neurology, are the same ones I find appalling in gastroenterology.

And the gut has so much STUFF in it…

  • The liver parked under the ribs at one side, the spleen at the other, holding half your blood at any one time, right across the top of your abdomen;
  • The endless loops of squirming intestine, stretching and shifting within their blobby webs of mesentery, shoving along several pounds of food residue at any one time along its length;
  • Lymphatic nodes linked in constellations in the shining webs of mesentery and glistening loops of intestine, ready to respond instantly to allergens or pathogens or anything else in your GI tract that could make your body revolt;
  • Major vessels, the abdominal aorta and the vena cava, coursing alongside the spine, apparently apart from the mess, but branching out so thoroughly and so minutely into the organs and the mesentery that the smartest rats in science couldn’t make it through that maze;
  • The tenth cranial nerve, forming an intimate and instant link between your brain and your gut, linking your brain directly to the largest grouping of nerves outside your brain, the nerves that surround and penetrate your organs and your gut, embedded in and supported by that amazing net of connective and fatty tissue, the mesentery;
  • And let’s not even go into the endocrine system, responding minutely — at the level of individual molecules at times — to the constituents in your food, the way you feel about them, what you need them for right then, what else you’re sensing at the time, and even what time of day or year or month it is… then hooking the info back out through the nervous system, cardiovascular system, lymphatic system, and of course the gastrointestinal system.

I was sitting in my Epsom bath today, mulling this over after the battery in my e-book died. I had done the squishing of my legs and arms with the washcloth, and ran it over my neck and back and sides too, but had a terrible time making myself touch my abdomen. It felt just awful. It also felt like it was somewhat detached from me, like it was floating a couple of inches off my back and spine, simply hovering, slightly displaced, in front of the rest of my physical self. Touching it was deeply upsetting in some way, triggering a wordless revulsion.

This is not an unusual experience for CRPSers. We often feel as if the affected parts of our bodies are almost separate from us, or like they belong to someone else, and touching them is — even apart from the allodynia — a crankiness-inducing, unpleasant experience. It’s a perceptual trick the brain plays, probably part of its general effort to manage more ghastliness than it’s really set up to deal with.

One reason I do the Epsom baths (and the stretching, and the activity, and the relaxation meditations, and the aikido/tai chi/qigong, etc.) is to stay on good terms with my body. That whole self-alienation thing is just too wrong, to me — my life is always best when I’m in my skin, so to speak, whether or not my circumstances suck.

Also, to be fair, my body has done nothing wrong; it just got some of the shortest darn straws out there, and it’s doing its mighty best to manage that. It doesn’t deserve my loathing at all. So, I work to keep on good terms with it.

This is probably one reason why I’m still often functional, frequently productive, and can still walk a mile without sitting down to rest on a good day — even after 15 years with this disease on little or no medication (here’s why no CNS depressants like narcotics, here’s why minimal other meds.)

Anyway, there I was in the bath, watching my belly inflate and almost float away, even though I was Epsom bathing (which usually calms my systems down), and realizing I was finding it unbearable to touch the darn thing, even though it was practically in front of me.

I thought, “Neurology is not that hard for me. Why is gastroenterology so impenetrable? Why am I making so little headway on figuring out this stomach stuff, and dealing with so many setbacks? Why do I get these little tailspins of terror about it? What’s going on in… the second largest collection of nerves outside my brain?” I said, as the lightbulb over my head turned on.

I thought, “I’ve been having a lot of trouble with gastroenterology. But I can usually do neurology.”

And the word for the neurology of the gut, ladies and gentlemen, is neurogastroenterology. (Break it down: neuro meaning nerves, gastro meaning stomach, entero meaning inestines, ology meaning study of. Now you have it.)

I’m pretty sure I can do that. I can sure take a stab at it.

First lesson: review the vagus, a.k.a. Cranial Nerve X. It’s a doozy.

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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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Make room for joy, especially when it isn’t easy

I’m an old ER nurse so please, trust me when I say that nobody gets a guarantee with this life. Nobody really knows what’s next, and indeed, everything CAN change in an instant. Even for the healthiest. (This is why the legislation torturing the elderly and disabled makes me livid. People who favor that legislation are poisoning their own future. Everyone who lives long enough will become disabled.)

The point is this: it ain’t over until it’s over. If you’re still breathing, you still have a life, you still have choices. If you’re still alive, you have some influence over the next moment, and the one after that, and the one after that. Only you can decide where to put your focus, for each breath of this life that is left to you.

Being aware in the midst of the hell is what capable spoonies do, and we find a bit of heaven in it whenever we can. Yes this sucks like nothing we could have imagined, and I have a crazy imagination; but I still KNOW that there is a lot more to my life than this pain, this weakness, this utter destruction of everything I thought made up my life.

Turns out that was all peripherals. When the structures of my life were utterly destroyed, I looked around at the blasted rubble that was all that remained of my old ideas of my work, my abilities, and myself. I wondered who I was.

And I realized I was the point of awareness that was doing the asking. I also realized that, without those assumptions holding me down, and despite the agony and unbearable loss, somehow I was free, I could be more simply and purely myself.

So now I’m on groups for this brutal disease, wanting to give comfort, but knowing the only really true thing I can say is, there is comfort to be had, but it’s up to us to make room for it in our lives, to push right past the pain and fog and grief to look for the rest of what this world still has to offer.

There is excitement and peace and ease and delight in this life, but we have to find ways to make room for it, to find time to notice it, even in the ongoing roar of this pain. Over time and with practice, we get better and better at the peace and the joy and the loving connections, and .. it’s not that the pain is any less, because the rocketing nausea these past few days tells me otherwise, but it doesn’t matter as much, because more important things have taken its place in the core of our lives.

Easier said than done, but it’s basically a matter of practice. It doesn’t come naturally, and nor should it, because anyone who responds to getting a leg ripped off with, “Oh, what a lovely flower!” is probably not going to survive to raise offspring.

"Lovely flower, ladies!"
“Lovely flower, ladies!”

Being frantic in the face of horrible pain is a good survival mechanism — as long as the pain subsides when it should. For those of us who live with that kind of pain, we have to learn to re-program that core survival response (!!!) and be more mindful about how we deal with life.

Find excuses to celebrate. Finished the dishes? Celebrate! Heard from a good friend? Celebrate! Is it Tuesday? Good enough reason — celebrate! It sounds trivial, but it works. It makes your brain stronger, bit by bit. Each success prepares you for more.

In the Years from Hell, when I didn’t think I’d live out the year for a number of years, I was utterly wrung out with misery, and I refused to accept constant grimness. It was intolerable, literally intolerable; if I left my thoughts to dwell in it, I’d have had to finish myself off.
me-fingers-2up
I turned my attention to whatever was not misery, and sucked the juice from it.

I noticed every sparkle of light on the water, every flicker of color in the tiny wildflowers in the grass, the way trees spread and shake their branches, the caress of the air on a fine morning, the particular blend of colors in every sunrise or sunset I was up for, the way the sky and sea reflected each other in every weather.
clouds_water_calmBay_web
Maina at sunset, with masts sticking up and reflecting down, both water and sky streaked with yellow, orange, gold, and purple clouds
I got to learn the habits of the birds, from the imposing night herons to the unearthly blue herons, rare goldfinches, raucous terns, fat geese, chatty ravens, and the everlasting seagulls. I noticed the weird little shrimp living in the greenery below the waterline on the docks. When I could, I got up on shore at sunrise around the equinoxes to see the incredible light-show as the San Francisco windows were lit up by the first liquid rays of the sun, a dappled bank of golden glory marching up the hill across the Bay.

I was like a seagull for joy, pouncing on every bit of it indiscriminately. Time enough for the grey grims when there was nothing else to find. I leaped on every chance to find some beauty, some moment to get lost in.
St._Johns-wort_(Hypericum_tetrapetalum)_(6316227601)
Sometimes I was disappointed: sometimes the weather soured; sometimes a friend wasn’t answering the phone; sometimes a dash of color was a piece of garbage, not a flower. (I still pick up random garbage when I’m out.)

Working to find bits of joy was probably the most important tool in getting me through, because I could use it every day and it didn’t depend on anyone else to work. Fortunately, things did eventually change, and I was there to rise with that tide.

I trained myself well. To this day, I find myself stopping and staring when I see sunlight or moonlight shining on water.
full moon clearing clouds over illuminated Bay Bridge, all reflected in the black water
It’s the most beautiful thing in the world to me. It saved my life day after day for years, so that probably makes sense, eh?

Be greedy; work at finding beauty and joy. It’s good for you. If nothing else, it pierces the veil of pain and frustration and it reminds you that there is a larger world, one worth getting to. Your old reality may be gone, but there are aspects of the new reality worth cherishing. I hope you all find the beauties that make you stop everything, just so you can get lost in them and soak up the joy.
glee

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Fragile Egg Syndrome

Chronic pain patients are often called Difficult Patients, when the casual cruelty and reflexive contempt of medicine and the ignorance of other people grates too hard against our increasingly impaired ability to compensate and deal with it as calmly and “rationally” as we used to.

I’m less and less certain that casual cruelty and reflexive contempt are rational to deal with. Really, the *rational* thing to do is draw the line when professionals behave badly, no matter what the profession.

I’m increasingly certain that those who provide care, and have gone to all that effort to be trained and licensed to do so, should probably take on the burden of acting with more kindness and courtesy than those who pursue less intensive interactions with the wounded, disabled, and ill. Not less courtesy. More.

The rational thing for the professional to do then is to reckon that requirement into the cost — because respectful and courteous patient interaction saves money and improves outcomes, but more/higher administrator salaries do not. The data on that are very clear… though strangely hard to dig out on the second point.

I sometimes mull the mindframe I had when I was working as a nurse, which was deeply compassionate without being cuddly or fluffy. I was well aware that only one person was paid to be in that room and adjusted my expectations accordingly. But still, I think of the casual disregard of others’ humanity that defines so much of health-professional behavior, and wonder at the culture that reflects. It’s not that we have to do degrading things like shove needles and hoses into people, it’s that we won’t let them wear real clothes or secure their electronics or even eat real food, when they’re in our hands. We no longer even warm the gel.

Anyway.

CRPS patients are a special category of chronic pain patients: we may be dealing with a level of pain consistently rated as higher and more intense, not to mention more constant, than anything else — including childbirth, most cancer, having fingers ripped off — with the sole exception of terminal cancer pain, which is at the top of the McGill Pain Index. It’s horrible but true that terminal cancer pain doesn’t last as long.

Colorful rendition of the McGill Pain Index, with many painful conditions listed, including Sprain near the bottom in the low teens, Chronic Back Pain in the middle, and CRPS up at 42-43.
Image thanks to Elle and the Auto Gnome

So, we are a distinct, and distinctive, subgroup of the Chronic Pain Patient set.

On top of that, of course, the brain remapping and the neurochemical disruption of longstanding CRPS means that our central nervous systems are absolutely hair-triggered for terror reactions, which transmute into all sorts of other things when our intellect has to wrestle with the terror… because screaming and fleeing blindly into traffic shedding broken bits of furniture and wallboard is, somehow, neither socially acceptable nor particularly useful.

My old pain doc, Dr. Richeimer at USC Keck Pain Center, has a wonderful term for those whom lesser physicians call Difficult Patients:

Fragile Eggs.

Isn’t that perfect? Easily broken, and when broken, extremely messy and hard to clean up after. Treat gently. Treat extremely gently. Understand that you may have a mess on your hands anyway. Keep your cool, adapt on the fly as the egg rolls around, and stay gentle. There’s really no other way to handle it.

(Like many others, I love that man.)

So here’s the thing.

At the end of a crappy week (thick with grief), I had a Pap test (painful, intrusive procedure which is easy to do badly) scheduled to check for cancer (which is frightening) because I had a blood test come up funny that can be a sign of gynecological cancer (so there’s grounding for the fear.) I know as well as anyone that these things mustn’t be delayed, but I waited an extra week in order to schedule a long appointment so that the test could be done in a rational, CRPS-friendly manner.

Silly me. Turns out a “long appointment” is 15 minutes. That’s not a typo. FIFTEEN MINUTES is a “long” appointment.

I really haven’t been keeping up with the downward slide of the health care field below the level of the best-of-the-best I’ve had out West. I’m speechless.

Did you know it takes 5-7 minutes just to say hello and catch up on the case with a complex patient? Do you know what it’s like to have a speculum inserted into a body that is one long scream of pain already, and the tiny, cheap, but essential steps it takes to make that a wise thing to do? Did you know that good practice for intrusive procedures, especially for those with PTSD around their bodies (which includes most women, frankly) is to meet the patient while they’re still clothed and have them undress for the invasion-fandango after they’ve had a chance to be human, and not just one long scream?

I know, it’s crazy to think that patients are human. Forget I said that. I don’t know what I was thinking! Pfft…

I told the office twit who roomed me and informed me that it was a 15-minute vist that a Pap smear on a CRPS body was not going to happen in 15 minutes. Twice. She set up the torture implements, which did not include Lidocaine gel or a warmer, in the cool office, and told me to get completely undressed and climb into the gown she laid on the exam table.

She didn’t mention that my provider, the one decent and rational entity in that department, was running very late. I had to find that out for myself.

Sitting in the cold room, staring at the torture tray laid out directly in front of me, still fully dressed because I could not succumb to being led like a lamb to slaughter, I tried to calm myself, to get my brain out of the state of being hijacked by terror at the casual cruelty of being tortured into spreading this hideous disease into my viscera, and helpless rage at this high-handed and disrespectful way of being treated.

I tried to reflect that, clearly, a lot of women who came to this office for care put up with it and, knowing New Englanders, never even thought of complaining because that would be a sign of weakness.

I tried to tell myself that my provider would surely rinse the speculum in hot water before using it, but that thought was booted immediately. I know from prior experience as a healthy person that a plastic speculum does not hold the warmth, but it does hold drops of water as they cool off quickly, and the temperature of that object does not affect the temperature of the 60-degree gel they put on it.

So, viciously cold thing going into my CRPS-y body’s core. Then that pinching, twisting jolt as it snaps open in mucous membranes which are wired straight into my central nervous system as well as my visceral cavity. During a weather- and trauma-induced flare.

There’s just no way that can go well.

I sat there for half an hour, trying not to stare at the torture implements although they were unavoidable in that tiny space, feeling my brain run circles around itself, trying not to scream, feeling my capacity for verbalization and rationality bleed away in the chill.

I realized that, although I wanted to connect with my provider and use the time profitably at least in discussing these problems and finding out my ultrasound results, I couldn’t sit there any longer. I needed forward momentum if I was going to come out of this intact.

So I spent the next 8 minutes writing my provider a letter, left it on top of the Patient Update document I had brought in (which mentioned my prior interactions with the staff, ALL of which had been record-setting-ly stupid and unproductive), and I left.

I did NOT run screaming into traffic. I didn’t break anything on my way out. I politely commanded the twit to copy my letter “now please”, stood over her while she did it, laid the paperwork I’d created for my provider in a neat pile on her table, and kept my copy for my records.

Then I quietly walked out, smiling politely at my provider as I passed her in the hallway heading towards the nurse’s desk.

I made very little mess, for a fragile egg.

I got my documentation, but forgot my purse. There’s something very Isy about that. (I’ll go collect it next business day, and hopefully that will be the last time I have to see them.)

So, this weekend, I have to do 2 things: find a gynecologist equipped to handle complex patients, and put together my own gyn exam kit — with a suitable implement, lidocaine gel, and heating pads.

Sometimes, BYO* is the only way to go.

I may be a fragile egg at times, but I don’t like it and I don’t intend to live there. I can’t control the industry, but I can control what I walk into the room with.

♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦
*Note for non-native English readers: BYO is for Bring Your Own. BYO is derived from BYOB, which means Bring Your Own Beer/Booze, normally used in regard to parties (obviously!) BYO moved into common usage on its own as a handy verbal shortcut; it’s still informal, but not nearly as informal as BYOB 🙂

♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦
UPDATE from early March

I got my own speculum, the Pederson type (which is a bit narrower); found food-grade silicon sealant (which smells strongly of vinegar, but nothing more toxic) and applied it over all the contact surfaces and where the edges meet; and prepared a bottle of pain-reducing Emu oil with a bit of nerve-pain-reducing Clove essential oil added.

I called the largest and oldest gynecological practice in the area, and asked for the doctor with the lightest touch. I was a bit disturbed when a large, fit, square-jawed, brush-cut fellow walked in, but he turned out to be an angel. He was happy to use my speculum, poured quantities of my pain-reducing oil over that and his hands, and gave me a break halfway through the procedure to sit up, get my pain/panic response under control, and pull myself into reality and out of the shocky place.

I’m sorry to say that the Pap test itself was a lot like having burning coals shoveled into me and pushed around, so yeah, there is definitely some nervous system remapping that has already happened to my insides. (It used to be an unpleasant little scratching sensation, and no more.)

This doctor wisely asked for a copy of the funky test, which was my serum DHEAS level. I went to my other doctor’s and got copies and ran them over myself. I took a look…

The doctor who’s substituting for my allergy/immunity doctor who ordered this test dropped a very serious brick. THE TEST HE REFERRED TO WAS JUST FINE. I do NOT have an abnormal DHEAS value. It’s a whole lot more normal than the rest of me!

I wrote the gynecologist a note on the back to that effect, and let him know that he did the lightest, best possible job under the circumstances and that I’m grateful. He looked absolutely white and shocky by the time he left the room, so I think it was a pretty horrible experience for him too, and I don’t want to scare him off of treating other pain patients.

I got a Pap test out of the way and learned something important about the state of my disease. I’m being more diligent about my multivitamins and SAMe, the methionine-based antioxidant I use as my main antioxidant supplementation besides vitamins. I’m researching the least nutty, most promising pain centers near me, at Yale and Brown Universities (Dr. Pradeep Chopra is at Brown, so that’s probably first on the list) and this week I’ll be making appointments.

I guess every setback is really a redirection or a kick in the pants for me. I may have CRPS in my viscera (which would explain a few things) but I needed to get my act together about getting a pain doc anyway. My DHEA test was normal, phew, but I’ve been harshly reminded to double-check everything the doctor says. I’m seeing my usual doc at that practice soon, and I’m going to ask him to double-check DHEAS results to see if any patient has been left uninformed and unfollowed-up.

I took a few days after the Pap test to simply refuse to think about it, because I did NOT want THOSE pathways to go any deeper into my impressionable brain! Took it easy, watched and read silly things, ran errands with J, took loads of vitamins and drank plenty of water… then started researching the pain doctors.

This is my policy… strategic withdrawal if necessary, yes; pause, rest, reboot, definitely; but in the end, “Never give up! Never surrender!”

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Losing Our Angels to Suicide

A friend I’ll call A died of suicide last night. It’s easy to say of people that they are rare and radiant souls once they’re gone, but A is the sort of person who was generally agreed to be a rare and radiant soul even when she was alive. Pretty angelic, really.

Suicide is a tough gig for all concerned, but being suicidal is living hell. I’m going to try to present some information in an accessible way, but this is an emotional time (it’s also deathiversary season for some of the biggest losses in my life, and there have been more deaths than usual this winter) … I’m very upset and very angry. It’s liable to show. Anyway, here goes…

Most of the time (not all the time), the deed that causes self-death is impulsive, which is the point of the 3-day hold in psychiatric hospitals: get them over that bump, then their coping skills come back, and then they find a way forward.

In cases like A’s, some survivors want to know why our loved one didn’t reach out, didn’t let us know ahead of time. Some want to know why this person “didn’t love us enough to stay.”
That’s a common feeling after suicide. These are all very common responses. Thing is, they miss the causative point.

Reality check

Here’s the thing:

Stop being so selfish!

It’s NOT ABOUT YOU. This is a tough one to swallow because you’re the one left alive and hurting, but it’s something to be faced in order to understand how this could happen.

It’s about being in so much pain that continuing is intolerable and there is no way this person can find to make it stop. Can you even imagine that? If not, then who are you to judge? If you can, then why are you blaming the victim?

Do you think she didn’t try hard enough, or know enough to battle this more effectively?

Actually, that’s a fair question. Some people don’t know enough, and need the chance to breathe, reboot, and find another way forward. (Most people who attempt suicide fall into this category.) It’s not an unreasonable thing to ask, so let’s look into that.

Some things can’t be fixed

My lovely friend A was a sophisticated, educated, well-informed consumer of, and professional in, the health care industry and effective alternative therapies. She really knew her way around.

I have a pain disease that, if I have to be truthful, hurts more every year. I’ve had over 15 years to ramp up to my present level of unthinkable, brain-blistering agony — and to find ways to manage it along the way. I can kid my mind most of the time that the pain is hardly there. I’m not likely to kill myself any time this year, though I might get flattened by a bus in a fit of absent-mindedness due to masking too much pain… you never know. (I’ll keep wearing bright colors and getting assistance around town, so don’t worry unduly, Mom!)

My friend A had a painful condition evolve recently that wouldn’t budge despite much work, and a surgery with… interesting characteristics. I sure don’t need to spell that out for those of you who’ve had, cared for, or performed surgeries. One of her main nerve branches was involved, which tells you the rest. It was risky, tough, and fraught. She knew that. Surgery was the only way to avoid the dreadful situation she faced if she didn’t have it.

By the time she made her last tragic decision, A could easily have been in a level of pain comparable to what I live with, but she did not have 15 years to ramp up. Most of that mountain of agony landed on her inside of a few weeks.

She knew what was going on in her body and worked for years to correct it without surgery.

She knew what the surgery might result in and she tried it anyway.

She knew her options.

She knew what to do to mitigate risk and optimize healing.

It’s likely that she did everything that could possibly be done.

It’s likely that there was too much pain and no way to escape it.

Sometimes, some things can’t be fixed.

I respect her choice. I hate it, it makes me miserable, but given the circumstances, I respect her choice as I respect her right to make it.

I don’t blame A. I wish that things had been different for her.

Please remember the compassion that was at the core of her spiritual and professional life, and return it to her as well as you can. She may need your compassion more than ever, because the end of her life was so awful, and she worked and fought so hard to make it.

She loved you. She loved us all, in her endless outpouring of loving-kindness and intelligence and determination. Please, try to give some of that back to her, now when it’s no longer easy.

Step Up

Of course you’re angry to lose wonderful people to suicide. Want to do something about that?

  • Vote for universal health care, so people like A can get timely care and prevent minor issues from becoming major ones and then becoming deadly nightmares. Because this should not have happened in the first place.
  • Lobby for universal housing and emergency accommodations in every state, so people like my brilliant friend Cross don’t have to choose between being murdered by a caregiver or taking their own lives, because NO OTHER OPTIONS EXIST.
  • Get your elected representatives to re-fund, and stop de-funding, mental health services and social safety nets, so my gifted friend Ethan didn’t have to shoot himself in the head to make the PTSD nightmares stop. Every dollar spent on these programs saves between 10 and 800 dollars in the costs of cleaning up the failures resulting from their absence. Our economy cannot afford that kind of constant, suppurating loss.

YOUR VOTING RECORD AFFECTS THE SURVIVAL OF THOSE YOU LOVE.

Don’t step into the voting box in the hope of choosing your next drinking buddy; the POTUS will never drop in at your neighborhood dive. Try to remember you’re voting for your next Chief Executive. This needs to be someone who’s smart enough and wise enough to do the job of leading a huge country that’s in serious trouble.

If you feel that, against reason and compassion, against economics and decency, you really have to vote against these policies or vote in those who oppose them, then don’t EVER complain to me about losing people you love to suicide, or maltreated illness, or poverty, or homelessness. These deaths are optional 99.9% of the time, and I have absolutely had enough of them!

This worm has turned

I used to be vigorously opposed to suicide. I spent too many hours coding people who had no choice about whether they lived or died, so that the occasional attempted suicides I treated in the ER just made the bile rise in my throat. Those idiots were bloody well going to live whether they liked it or not, and if they reached consciousness, they were getting a short and fiery talking-to from a short and fiery RN.

One day, I confided my thoughts to a longtime trauma counselor. She stopped me dead when she said, with great pain and exquisite kindness, “They do that because they can’t think of any other way to stop the pain.”

I tried to imagine so much pain and so much trapped-ness… and I couldn’t hate them any more.

And then, years later, I developed CRPS… then fibromyalgia… then dysautonomia… and, this week, I’m getting screened for a couple of cancers.

Those of you who follow this blog know that I spent a few years clinging to life by a thread. The pain, disability, and relentless, pounding losses and brutality of the world on the suddenly-disabled, on top of an ongoing roster of bereavements around me, very nearly finished me.

I was suicidal for some of that, only I was not going to screw it up; if I did it, I was going to do it properly. So there were no attempts, there was a thorough exploration of the idea. (At the very bottom of my personal root under the final level of Hell, I found … curiosity. I could not rest until I found out how this story went. Not only would I miss my funeral by several days, I’d never find out if we got a cure in my natural lifetime, if I ever figured out how to blog, what exactly CRPS is, who I had yet to meet, or anything. That was more unbearable than pain for me: unsatisfied narrative curiosity. I can’t explain it, I can only report it. I’m still working out how to crash my funeral.)

The point is, I’m pretty familiar with the landscape of endless pain.

I understand, with diamond-sharp clarity, that there is a point where a person simply shouldn’t have to put up with any more.

I know, as I never did in the innocence of my ER days, that there is such a thing as No More Options.

The word “unbearable” is no longer just an adjective; it has real meaning. Some things should not be borne, and that’s bad enough, but some things really cannot be borne. What then? Do we turn our backs and shrug, feeling we’ve done our jobs?

Those who’ve survived the suicide of someone you loved, you have my absolutely heartfelt sympathy. It’s awful, peculiarly and specially awful. There’s nothing like it.

If you’re really outraged, turn your anger onto a suitable target: the systemic failure that made that cherished person’s life unlivable.

That would honor them, in a remarkably constructive way.

I’m off to make sure I’m registered to vote tomorrow. I don’t want to sit this one out. I’m torn up and miserable, and I want to honor the memory of A and all my dear departed angels.

How

I

miss

you.

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Handling anxiety and its obnoxious little friends

In CRPS and dysautonomia, several parts of the brain get under- or over-enthusiastic (or both, unpredictably.) It’s easy to oversimplify, but even more confusing; each part of the brain has many jobs, so I can’t say that the anterolateral cortex does one thing and the cingulate cortex another.

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

I can boil it down by the effects that these remappings have, though. That’s relatively simple!

So, in me, this is what happens as a result of these scrambled brain bits.

1. Obviously, pain signals don’t know when to pack it in. That’s obvious. They just keep going and going and going and going and…

roadblocks using supports shaped like pink bunnies,  in pairs, leading around the corner

2. Coordination gets impaired. I used to be freakishly well coordinated, so I don’t normally get much sympathy, but this is a bit unfair.

I had 38 years of knowing exactly where my body was in space, of being able to move without triple-checking myself, from the time I first learned to walk. Or, rather, the time I first learned to climb out of my crib. … Several months before I was steady enough on my feet to toddle, I’d do a layback (a climbing maneuver where you grab one edge of a gap with your hands and then walk your feet up the opposing surface) to get up the side of my crib…

woman climbing up a crack in a steep rockface, hands pulling one way and feet pushing the other
Feet push, hands pull, and you go upwards. Photo JMiall on Wikimedia Commons.

 

…then rappel down the rails and crawl down the hall to my parent’s room to let them know that it was almost dawn and I was ready to play.

I also learned to jimmy the rails so they came down altogether, but that took a little longer. More engineering and upper-body strength involved, you know. (I got a bed well before I was two. They figured it was safer.)

I’m not used to living in a world where my body isn’t exactly where I think it is. I probably take more damage than someone who’s been this poorly coordinated all their lives, because there’s this huge layer of bewilderment and surprise. Not to mention lack of preparedness.

I don’t compensate for it unconsciously — I have to be very conscious about being careful bending over, walking not running down stairs, always wearing de-skids when I go outside in the snow. This requires a bit more bandwidth than just doing things as you normally would.

3. The third and most annoying thing is, my brain just LOVES to go to anxiety.

brain_limbicsystem-inflated

Anxiety is a bit of a circus. It pushes up my blood pressure and makes my heart beat fast, which is worrisome in itself. It makes my vision go whitish, like everything is covered in fog. All this makes it rather hard to think, to reason out whether I really have cause to be anxious.

Then my stomach starts nudging the back of my throat, which is never pleasant. I keep ginger near all the time, because Tums just make it worse and I can’t stand Rolaids or any of the others.

Then my waste systems get into a tizzy and I feel like I have to go wether I do or not. If I don’t need to go now, then I will in half an hour, because (as I’m sure you remember from anatomy class!) the adrenals sit right on the kidneys and when your adrenaline goes up, so does your kidney activity.

medical artist drawing of kidneys with adrenal glands sitting on top of them

So, on an eventually related subject, I recently got worked up for endocrine and allergy issues. The tests are still rolling in. A couple of blood tests were funky, so I need to get screened for gynecological cancer, and I need to get checked for pancreatitis — which, with my squeaky-clean life, would be decidely, wildly, completely idiopathic — if it isn’t cancer.

Naturally, part of my brain is throwing up images of a midsection riddled with malignancies. I’ve seen a few of those, so it’s not a big stretch.

That’s it, I’m doomed.

Lead-grey statue of dark angels swooping down from the sky

Blood pressure.

Heart rate.

White fog.

Stomach… wait, the stomach goes with the pancreatitis.

What notion of reality am I in now? The cancer one or the anxiety one? Because I can ignore the anxiety one — OMG I might have metastatic cancer! Everything’s turning white! My heart’s going too fast! AAAUUUGHHHH —

And this is where my head starts spinning around and the pea soup comes out at projectile velocity.

Not really. It just feels like being in a horror movie sometimes.

gaudy logo of the horror film, "House of Wax" it comes off the screen right at you!

I’m lucky. I have a sense of humor. I just think about horror tropes when this circus starts, and I snort and calm down a little bit.

I have to jump on that first lowering of tension or it spins right back up. This is the dysautonomic brain at work — getting right back to panic is the easiest thing for it to do.

If mentally reaching out for my anxiety dials and trying to turn them down doesn’t help, then the very next thing to do is yawn.

yawning_Macaca_fuscata_juvenile

It’s an incredible tool — no bad side effects, many uses. Plus, you can do it in company.

yawning_Rudolph_Valentino_and_Carmel_Myers_in_All_Night

Let me explain.

Yawning starts with pulling air into the deepest part of my lungs. I can imagine it going all the way down my spine and filling the bowl of my pelvis. My ribs reach out and stretch nicely. This deep breathing is the first key.

The second key is that my jaws open up wide, releasing that clenched set of muscles there. It’s impossible to grit teeth while yawning.

Tiger yawning hugely

I may find myself in a yawning cycle — yawn after yawn, for a good five minutes. I figure I need it. All that oxygen, all that jaw-releasing… hard to beat.

Now that my torso, shoulders, neck, and jaws are unclenched, now that I have enough oxygen circulating to let color come back into the world … now I can begin to cope.

The first thing I do, before getting up, is check my breathing. I’ve gone back to breathing from my belly, drawing air down to where it needs to go. Good.

The next thing I check is my head and neck. My jaw muscles feel softer and my neck is flexible; I give it a stretch or two each way to check. This is good.

This is a functional situation now.

Okay, I’ve done all I can. I’ve pulled myself out of the anxiety tailspin. I’ve made the next round of appointments.

As I keep telling others, don’t borrow trouble; all I can do is get on with my life while I wait for those appointments and their results. I’ll take it from there.

It doesn’t help matters that I’m worried about friends and acquaintances who are facing verified life-threatening situations. The background anxiety makes my own triggers harder to handle. But I’ve done all I can there, too. I have to accept my limits and hope for the best for them.

Editorial note…

It’s hard to see good people being treated like disposable objects. There’s something very wrong with that.

As a historian, I know that human societies go through these cycles where the empires get bigger, the oligarchs get out of hand, and then a lot of people die as the system falls over and much is lost, and then eventually a set of new systems arise from the rubble. Eventually some of them flourish, a few emerge as empires, and the whole cycle goes around again.

I hate being in a falling-over period of history. There is so much we could be doing that does not involve ripping people and nations apart to see how much money can be made from the minions before everyone dies.

Sadly, I don’t get to make that decision. I’m not an oligarch.

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