I was mulling a post called, “The Pulse,” about how my life tends to go in surges, and when I work with that, things go better, but when I try too hard to flatten life out to a steady level, everything goes badly.
It’s about the pulse — push when I have the momentum to push, pause when the momentum fades, sink when even standing still feels like a sucking drain; push, pause, sink, push, pause, sink, and so forth.
If you’ve ever held a stethoscope to the sound of a beating heart, you have an idea what that sounds like.
It’s like pacing, a familiar concept to the chronically ill, but on a larger timescale.
Winter always involves some withdrawal, some sinking. This makes lots of sense to my acupuncturists and martial arts teachers. The traditional Chinese medical model assumes that we’re embedded in a larger reality, with weather and climate and timely changes, a key idea which conventional medicine doesn’t acknowledge very well.
I used to be able to push enough, even in winter, that the annual sinking wasn’t that obvious, given that most of those around me were in winter too. However, since my mid-30’s, a lot of people I’ve loved, liked, and depended on have died in the chilly armpit of the year. Deathiversaries, as I’ve noted, tend to have an effect on me, especially when they pile up like… well… bodies.
Perhaps I should move south of the equator. Then it’ll be warm at this time of year, at least for me, if not for my lovely ghosts.
Late last year, two honorary brothers, one of my dear CRPS friends and a young friend whose life I actually saved at one time, both died. Now, at least two of my honorary sisters are at the end of their lives, one of CRPS and the other who’s working on her 6th cancer.
I’m not whining. It’s not about me, it’s definitely about them. I’m not dying.
It’s just that it’s hard to remember that, sometimes.
Helpless as I am to hold back the grim reaper’s scythe, there are sometimes things I can do to soften the end of others’ lives. My first nursing job was on an HIV/AIDS unit in 1991, so this is a well-established idea for me.
This year, though, 24 years on, some invisible line has been crossed, or some invisible straw has landed on this camel’s back. I cannot move. (It’s kind of wild that I can write, finally.)
I am paralyzed, generally anesthetized, frozen. There is no pulse, no pause, no sinking, not a microgram of push.
Four days of work, pushing so hard it sucks my breath away, and I now have a psychotherapy appointment with a 30-year veteran of helping the chronically ill and deeply traumatized. Plus one blog post.
I can’t do a thing for anyone else until I can move and breathe again. This thought alone is like a blanket of razors, since the condition of my friends isn’t going to wait for me to get my act together, but still — it doesn’t break the ice.
There are some things that are too much to expect a reasonable person to bear, and anyone with a hellacious disease already has one of those things on their plate. Those who are in the last stage of life have another. Those who are bereaved … you get the idea.
I’m posting this, not to write my diary in public, but because I know I’m not alone. Those of you who can barely move enough to shift the cursor, be assured that I know you’re not alone, either. Somehow, we will get through this. We will melt the ice, with help if we can get it. There is always an afterwards.
There’s one thing that offers this frozen veteran of grief the kind of scathing consolation that’s all I can expect these days: when my time comes to shuffle off this mortal coil, then, if there’s anything left of me to notice or care (as I strongly suspect the more subtle yet intransigent laws of physics require), I will be in the very best company.
Older Brother and his wife, Aunt Krusty, sent me a fabulous little doohicky from a medieval town they visited. It’s a brooch of a common design element used in the Middle Ages: a tabby cat with two tails and fabulous eyebrows offering a mouse, with the legend, “visis mu” — “here’s the mouse.”
The enclosed card contains the usual wonderfully vague, semi-academic wording saying that animals with two tails (no mention of fabulous eyebrows) are signifiers of evil forces at work, but beyond that, nobody really knows what this means.
I thought some academics kept cats…?
My lovely polyglot friend Sylvie does. Sylvie is a CRPS compatriot who lost a frightening percentage of weight late last year, from which she’s still recovering. Her cat Nala has become a serial killer of the entire species Rodentia, bringing her grisly accomplishments to lay at Sylvie’s feet — or couch, or pillow — with startling frequency. Naturally, they aren’t always quite dead.
Cats don’t have thumbs, so they don’t really get it about cooking and cupboards. All Nala knows is that Sylvie obviously needs to work on her hunting skills, but in the meantime, Nala can at least help her fatten up.
Also, cats tend to gatomorphize, just as those of us who are close to them tend to anthropomorphize. Nala has no idea that mice, gophers, shrews, and moles do Sylvie no good at all; that, on the contrary, they’re upsetting, messy, and potentially infectious. Nala thinks they’re good, and Nala cares for Sylvie, so they must be good for Sylvie.
She honestly believes that, with all her furry, loving little heart. “Visis mu! Have this great mouse!” So the slaughter continues.
Sylvie’s garden blooms, but her house is an abattoir at times. This is not a bad metaphor for explaining one of the more difficult aspects of being under a doctor’s care.
Most doctors really mean well. Becoming a physician takes an enormous amount of work, which requires great commitment to complete. It’s a hard job with ridiculous hours, especially for the first few years.
That doesn’t mean they’re all bright or gifted or even humane. It just means they believe in the value of medicine and surgery, enough to spend a decade or more learning to do it.
Doctors are intensely, let’s say, socialized to stay within the parameters of accepted practice. It keeps them out of trouble, although it may also keep them from true excellence at times.
Mostly, they love those parameters. They love having guidelines. They are truly, madly, deeply convinced of the value of the meds and procedures that they’re trained in. It doesn’t help that, if they put a foot wrong outside of those parameters and things don’t go well, they can lose everything. They are heavily incented, so to speak, to stay inside whatever they understand their parameters to be.
Now, this is tough for CRPS patients. There is so much variation from one CRPSer to the next, that there are NO established treatment parameters that meet the medical gold standard of being consistent, repeatable and reliable over a majority of patients.
None. Nada. Zilch. There is not one thing that consistently works well for most of us — at least nothing that comes from a bottle or an operating room. Activity, rest, hydration and nutrition all seem to be key, but even their benefits are hugely variable, and you rarely hear about them from physicians.
For a while, it was thought that COX-2 inhibitors combined with membrane stabilizers, came close to being a semi-magical bullet. (Gabapentin/ Neurontin, pregabalin/Lyrica, and so on, are known to most patients as anti-seizure meds, but many healthcare providers call them membrane stabilizers.)
COX-2 inhibitors were given a general thumbs-down over cardiac effects (which many people with chronic CRPS have enough trouble with anyway) and, as peri-surgical meds, did not live up to Reuben’s promise that subsequent chronic pain would be less.
Ironically, it had already been established that 500 mg of vitamin C two or three times daily for 3 months after surgery does have significant demonstrated benefit, reducing the incidence of CRPS – the most intractable and severe form of chronic pain – by 35-80%, depending on the extremity, extent of injury, and probably the degree of compliance. Moreover, vitamin C is very cheap, as well as very effective. (See extensive links list below.)
The anti-seizure meds, unfortunately for pain patients, did not get removed from first-line treatment.
By then, unfortunately, whole nations (Great Britain and the Netherlands, take a bow) had adopted Reuben’s corrupt recommendations for first-line treatment. It takes a lot more effort to undo that level of adoption than it does to hoodwink an entire sub-economy of peer reviewers and medical specialists, apparently.
The arrogantly reputable journals that accepted his work, and subsequently published other work which was based unquestioningly on his false results, are still trying to live it down. What’s interesting is that other doctors couldn’t replicate his results, so he was the only one publishing these great data… yet journals and physicians continued to publish and follow his recommendations. I do hope the journals revised their “peer-review” process to include more actual, I don’t know, reviewing, perhaps by peers.
It could take decades to undo much of his damage, and meanwhile, the advancement of treatment has been down the wrong track for years, while other more appropriate avenues of treatment have been ignored or even forgotten.
So, millions of CRPS patients are being first-lined with truly obnoxious meds with iffy benefits and ghastly side-effects, rather than being examined as individuals, and assessed as to whether:
neurotransmitter support, most provably with antidepressants, would be more appropriate, given disease-related onset of affective symptoms (antidepressants), sleep problems (tricyclics), or dysautonomia (SNRI);
a short, hard attack of narcotics and aggressive PT would answer in the case of a hardy, active, or young person;
a proprietary or tech-based treatment, like TCMI or Calmare, are indicated for those who show active neuroplasticity or respond well to electrical stim; or
this person is a good candidate for ketamine protocols of one kind or another, some of which are no more toxic than membrane stabilizers.
it might be reasonable to try a more experimental approach which has demonstrated significant promise, notably magnesium infusions, immune globulin therapy, or temporary immune suppression.
Oops… Doctors, as a group, forgot to look at the patients in their excitement to have a designated treatment protocol. “Visis mu! Take this mouse – it’s government approved!”
But the doctors doing the offering really think this is a great idea. That’s what the guidelines say, after all, and they are evidence-based – except that that evidence was cooked.
While anti-seizure meds do work very well for some, starting with them reflexively is not reasonable: the cost-benefit profile is worse than most of the other potential first-line alternatives, due to high rates of side effects and comparatively unimpressive rates of usefulness.
Using them as a first-line treatment delays more effective, lower-cost treatment for many people in horrific pain, and, between the delay and the cognitive and neurologic side effects of this class of drugs, causes greater impairment (with higher associated costs) in far too many. It should be a second or even third line treatment, if you go by the evidence that has remained credible – taking a back seat to less fraught (not perfect, but still less problematic) therapeutic agents and interventions.
But the docs who lean on it really think it’s great.
Reminds me of my previous pain doctor, a competent technician with a bedside manner directly related to the patient’s appearance. He has a good reputation in his area – which tells you what a lot of rubbishy practitioners there were in the area.
He wanted to shove into the neck of my spinal column a couple of widgets which were the size of Starbucks drinking straws – you know, those really fat ones that you could suck a steak through, if it’s tender enough. Two of those, jammed into a six-inch length of a space that didn’t have enough room for one, and which – as we now know – was already inflamed in much the same way that the spinal cord of someone with a spinal cord injury is inflamed.
He liked it because shoving surgical hardware into other people’s bodies is what he does best, and these widgets have embedded electrodes which could zap the pain signal at the spinal root of my arms and he thought it would work really well and I had the right psych profile for it and this was the greatest thing since sliced bread.
It was a nice idea, and, again, this particular thing works spectacularly well for some people. For me, not so much. In fact, it was a disaster. It was truly worse than the CRPS pain, which takes some doing. The equipment trial still gives me spasms due to the mere memory of the staggering physical trauma it entailed.
Truly, each of us is unique.
Once he realized that I couldn’t accept his mouse, his whole manner changed. Just like a sulky cat, nursing his disappointment seemed a lot more important to him than finding something that would help me.
How could I be so callow and blind that I couldn’t appreciate this great mouse he wanted to give me? There’s just no helping some people! His neglect and disaffection was so damaging I had to fire him and move on to the excellent Dr. Richeimer at USC Pain Center, 4 hours’ drive away and worth the two-night stay in the armpit of LA.
Another dear friend, the angelically kind M, has roughly 3 dozen anaphylactic reactions a year. She is so hyper-reactive to so many things that driving past a town with the wind in the wrong direction could be the death of her. 3 dozen anaphylactic reactions a year, and she’s in her fifties now. Yes, amazing.
She saw a young cardiologist, who did what young cardiologists do: he threw upon her a huge, bloody gopher, covered in prickles and gore. “Your heart is dicky! This could kill you in a year! Visis mu, I can save you! Isn’t this exciting?”
Personally, I think the appropriate thing to do is to pick that gopher up and shove it down his throat, but when a patient does it, it’s assault and battery with a biohazardous weapon.
The cardiologist, naturally, is doing exactly what he was trained to do and is wildly excited to have such a thrilling case and such interesting news. She, who already faces death on a weekly basis, should clearly get wound up about this because it might kill her if she doesn’t.
A brickbat? A muzzle? What do you think? Words simply fail. All I can think of is applying to him the kind of cat that has nine tails. It’s not a good way to model compassion, let alone tact, however.
As for me, I have to pick a primary doc for myself. My old one retired from private practice, and I miss him, because I could just walk in and look at him and he’d know.
I’m just thrilled at the prospect of training someone new, who will be a generalist treating the peripheral issues of someone with an incredibly peripheral-intensive disease. There will to be many rounds of “visis mu”, as he comes up to speed. And, since it’s all well-intended, I have to find a way to accept one or two mice as graciously as possible. One can only recoil so often before they decide they can’t treat you.
They mean well. They really do.
I never have figured out what to do when a cat, with every evidence of caring attention, brings me a mouse. I try to be nice about it, and that’s the best I can do.
Sadly, Sylvie’s furry little caregiver, Nala, departed this earth for the Happy Hunting Grounds. By a series of flukes, Sylvie wound up with a rescue cat, Filou (meaning roughly “brat” or “mischief-maker”), who has taken over her care with great enthusiasm — and much less bloodshed.
Relatively useful treatments for CRPS:
Most suggestions are pulled from the current IASP recommendations for diagnosis and treatment of CRPS or the pivotal work of Dr. R. J. Schwartzman, Dr. van Rijn, and Dr. Breuhl (part of the team that developed the IASP guidelines), with updates from recent science available on PubMed.
The authors have their blind spots and biases, of course, so researching any therapies that sound interesting is a good use of time.
The National Library of Medicine at the National Institutes of Health (U.S.) is an outstanding clearinghouse of articles from peer-reviewed scientific journals: http://www.ncbi.nlm.nih.gov/pubmed/?term=complex+regional+pain+syndrome
Just add the term of the treatment you’re interested in to the MeSH term, “complex regional pain syndrome”, to maximize useful hits.
Too big a subject for one blog post, but I’ll try. If this gets poetical, there’s a reason.
The home of my youth, Egypt in the mid-to-late ’70s, (alternate link: http://jldtifft.com/, click Galleries, click Search, enter “Egypt”) no longer exists. The generous and opening society, the cobwebby clutter of the Cairo Museum, the beautiful horses that were cheap to ride, the empty vastness of the Red Sea shores with the impossibly deep nighttime sky,
even the occasional cockroach in the sodas… Shot down, cleaned up, built over. So it goes. One day, I might adjust to its absence.
I consider New England my home — one very special part, roughly between Mount Greylock and the Quabbin. When I had to move away, the first time, I remember feeling lightheaded as I drove across the border into New York, and spending the next hour counting and re-counting my limbs. I was sure one of them was missing. The feeling of dislocation, in its most essential sense, was that powerful.
When I moved back, coming the southern route, I remember my cat (originally a native of Egypt) waking from her long slumber as we drove through the last few miles of Connecticut and into southern Massachusetts. She had a lot to say about it, which amused the other drivers. When we got onto the Mohawk Trail and headed uphill into the Berkshires, her white fur glowed (I never found out how she did that) and she climbed up to the dash, where she could smell the air coming in through the vents. She inhaled it with complete attention, entranced, ecstatic.
I completely agreed.
To me, the endless green, the snuggling hills, the way the trees mingle with everything around them, the way the water bends and bounces over the sparkling stones, in that particular region, is the most beautiful on earth.
The airy, daffy grace of the black tailed deer, the sweetly sardonic canniness of the foxes, the fluffy explosiveness of the rabbits – not quite like anywhere else.
The white granite begot my bones. The ubiquitous brooks are the flow in my veins.
The turning of the seasons could ignite poetry in the driest of souls: from the full-throated glorious summer, with birds shrieking their fool heads off and the hayfields looking like fat emerald velvet scattered with amethyst heads of clover; to the outrageous glorying riot of autumn; to those rare days in winter when the first light sets every tree, covered in a skin of ice, to blazing like fountains of diamonds; to that astonishing time when the air touches your mouth differently, you notice the first puddles of dirt showing through the snow, the very hint of a crocus nose pokes through, and winter isn’t over yet but the rise of spring pulls you up by the heartstrings.
A friend of mine sent me maple syrup she’d collected and boiled from her own trees.
Every now and then, I take one taste, and that’s all I need: I can smell it, hear it, feel it — if I close my eyes, I can see it too.
I love the un-fussiness of the people. Outsiders consider New Englanders reserved, but it’s more that they’re judicious. If it were obvious how utterly decent they are, nobody would ever leave them alone.
A visitor made this plain to me. A crusty old fart, whose family name was on half the landmarks in the area, had just plowed my driveway with heavy equipment. Knowing from my winter of splitting and hauling cordwood what it takes to do winter work, I invited him in for fresh-ground coffee. He hesitated until I said it was fresh-ground (I never drank much coffee, and it either had to be good coffee or a bitter day for me to enjoy it, so I made sure mine was good.) He came in, stamped the snow off his boots outside and inside, and shut the door as he unzipped his enormous down jacket, which was itself stiff with cold.
Underneath the crusty outer layer of jacket, the down was puffy and warm, opening out in billows behind the zipper. As the coat opened, so did his face. His voice warmed up and he reached gratefully for the coffee, alight with delight and fellow-feeling.
That’s New Englanders all over. Super crusty and maybe chilly on the outside; underneath, all soft, gentle, slightly fluffy, and ever so warm. Once a New Englander accepts you into the inner circle, you’re there for life.
It’s not bad. Not bad at all.
Years ago, the aggressively shortening days of winter made half the year pure hell for me. No amount of expensive lighting could compensate. With CRPS on top of that, the cold is unbearable and the extra work of winter is beyond me – and I used to love splitting wood, and even shoveling snow. It was the second-best way to get warm.
I’m more or less trapped on the other side of the continent. I’ve given up on long trips until I’m strong enough to recover quickly; the current recovery time is 10 days, which doesn’t leave much time for visiting.
Nevertheless, and despite the fact that October’s shortening days are impossible there for me, there are times when I miss being home.
I’m thinking ahead to finding a place to settle. Where I am now is temporary, and for a very specific purpose (more on that later.) I’ve had a decade of transience, with much travel and frequent moves. I have other things to do, and I want a home to do them from.
I’ve had two excellent, intriguing, beautiful and fulfilling homes in my life. That makes me very lucky. Nevertheless, before too long, I’ll be looking for one more.
I’m too conscientious a historian to call it Indian summer, when the normally pleasant California shoulder season turns murderously hot.
I’m cleaning up, getting rid of clothes that were old a year ago and replacing them, and canning, dehydrating and even preserving food. I feel driven to, although it’s a lot of work and not necessarily CRPS-friendly tasks.
J cannot fathom why I’d be cooking in this heat, let alone making heavy, hearty food like bacon mash.
He’s cutting firewood instead.
Yeah, I know. We’re both kinda special.
I have 4 blog posts almost ready to go up, but I keep making the mistake of starting my online time at social media. Within minutes, my attention is shot. I can’t finish a blog. I can barely finish a sentence.
This is the first vaguely functional day I’ve had after a spectacularly ghastly mast-cell-mediated flare.
Silly me, I ran out of my zyrtec (which I didn’t take very seriously; it’s not important like an SNRI, right? HAH!) and spent one day incoherent and two days merely swollen, crabby and able to cope only by losing myself in mindless tasks or Terry Pratchett books.
Took a day to figure out what was wrong. Partly, that was because I didn’t realize how much the zyrtec was doing for me, and then, of course, there was the headache that made me want to hack off the offending part, which made it quite hard to reason things through.
J is still avoiding me, hiding in the trailer with the tv when he’s not actively butchering logs. It’s possible this chicane isn’t over yet; his behavior is usually a reasonable guide to how unbearable I am.
I only took one zyrtec today, as my stomach would not even think about more. In a couple of days I may be back up to my usual 2. It will be nice to have normal fingers; reasonably functional digestion; less inflammatory pain playing xylophone on my spine, with rimshots off the other joints; and maybe a calm and considerate personality again.
Anything is possible.
Isy’s anti-inflammatory mashed potatoes
Obviously not for those with belladonna sensitivity.
5 pounds organic red potatoes, cleaned and coarsely chopped
1 organic white onion, diced and lightly browned
4 oz grassfed butter, like Kerrygold or Organic Valley Grassfed, in chunks
10-12 oz grassfed aged cheddar, like Oscar Wilde 2 yr, Cabot Extra-Sharp, or Kerrygold aged cheddar, sliced or chunked
Optional: nitrate-free naturally-raised bacon, like Niman Ranch, cooked until very crisp, then drained and crumbled fine
Steam the potatoes in the turkey broth.
You might need to assemble the rest by halves, depending on the volume of your mixing bowl or blender.
Dump the rest of the ingredients into a mixing bowl or, if you have a really good blender, use that instead. Put the potatoes and broth on top, so the butter and cheese start melting under them and make it blend better.
Beat or blend until it’s the consistency you like.
Someone asked a question on social media that led to my doing a brain-dump on the basic format of current treatment for CRPS. This will take on a more formal form, but right now, for quick reference, here it is.
Like many others, this person has narcotics as a primary form of pain control. Increasing the dose increases function, but past a certain point, is that a good idea?
And, more importantly, the biggest question was, what does it really take to be able to have a life again?
Common-sense note on narcotics
Firstly, it is GREAT to have something that works. I know plenty about narcotics from a physiological and neurological and even a gastrointestinal standpoint, so I know the arguments for and against — but, when all is said and done, it’s great to have the option and it’s great to have something that works for you.
Keep what works! Unless and until you really can replace it with something better. (Clinicians, in their overbearing way, can be pretty cold about this.)
In the end, if you need to increase the dose, then increase the dose, but given how our bodies adapt and the disease shifts over time, it might be good to keep higher narcotic doses in your back pocket for breakthrough pain and flares, and see about the other meds that treat nerve pain specifically, support (in some cases) your neurology so you can function better and be more stable, and leave some slack in your body’s narcotics “budget” for other times.
Doctors should be able to support the idea that you should be able to have a life, and happy to help you figure it out. Good pain specialists have this as a specific goal which they try to help us reach as much as possible for as long as possible.
Read tamingthebeast.ca or elsewhere on this blog for loads of tips on nutrition, homeopathics, herbs, and other at-home strategies. This is just about the stuff your doc can do for you.
I mentally break these into 6 categories, 3 of oral meds and 3 of other, more interventional stuff:
Neurochemical support: Mostly antidepressant-category meds, from tricyclics to SSRIs to SNRIs. SNRIs have the significant bonus of potentially stabilizing a faulty ANS.
Transmission shifters: Mostly anti-seizure meds, Lyrica and Neurontin. Ketamine certainly shifts nerve signal transmission, and the protocols for giving it are getting better and more specific. Technically it’s an NMDA receptor antagonist, but it affects opiate and MAO receptors too.
Remember, all meds have side effects. There is no free ride; sorry!
Most of our meds can affect judgment, memory, and perception. Ask a relative, housemate or friend to check your brainpower and personality, to see if there are effects you’re not aware of.
Avoid polypharmacy, or too many meds, because it’s a great way to create a neurochemical mess. I stop at 3 different ongoing meds, since I can’t tell what’s causing problems if I take more. I also have 3 as-needed meds, which I rarely use, unless the side-effects of the pain/nausea/wheezing are worse than the side-effects of the meds.
Last but not least, med is spelled M.E.D. which means Minimum Effective Dose. Both adjectives are equally important. It must be effective, or why are you taking it? It must be the smallest dose that really works well, because otherwise you’re dealing with the same issues mentioned in the previous points, and they get a lot worse with overmedication.
Keep in communication with your doctors about your meds. If they’re savvy, they’ll work with you to optimize your medication profile for best functioning with fewest problems.
Injections and implants: spinal root blocks, prolotherapy, spinal cord stimulators, botox injections, spinal baclofen infusions, implanted drug dispensers.
Zaps and rads: TENS (electric counter-stim blocks the nerve pain), TCM (electro-magnetically stimulates and remaps certain parts of our brain that support the disease), Calmare (a more complex electrical technology that retrains the pain signal so it eventually doesn’t restart.)
Retraining, rebraining: Multi-Disciplinary Functional Restoration/Rehab is the gold standard for treatment. Most of these programs, but not all, require participants to be narcotic-free. The puritanism I can do without, frankly, but the whole-person approach, and the enormous mental toolkit you come away with, is absolutely life-changing.PT, OT, counseling, and learning about relevant subjects from pain mechanisms to nutritional effects on pain and function to communicating effectively with those around you so everyone can do more with less effort, is simply tremendous. It used to be a shoo-in for US citizens because it got people back to work so effectively, but in the industry overall it’s more profitable to keep us sick, so now it’s harder (but still possible) to get that paid for.You have to have determination and some mental flexibility to get admitted into a program, because it’s hard work, but if you find a program that agrees with you, then it could be the single biggest change in your life.
Every time something goes under your skin, your body has a shocky/inflammatory response. It may not be noticeable, but if it is, be ready to manage it.
If you get an invasive procedure, like implants or injections, then use one of the vitamin C protocols to help ward off flares and exacerbations: 500 mg 2 to 3 times daily, for 1 to 2 weeks before the procedure and 2 to 3 months afterwards.
Talk over these different options with your doctor, if you haven’t already — increasing your current meds, using supplemental med support, trying technologies and interventions, risks and benefits.
Also, sadly, it’s important to discuss the realities of funding and insurance coverage, so that you can develop contingency plans to follow in case your hoped-for option doesn’t get approved right away.
Always leave yourself a way forward — that’s a good strategy 🙂
There is a lot that can be done, and most of us cobble together a few different things that work a bit so that, together, they add up to enough to let us … have a life 🙂
Cross Y. was a friend of mine. He wore his heart on his sleeve — there was no deception about him, no malingering, no lying, no selfishness. Selfishness was something he needed more of, and tried to aspire to, because he forgot his own needs in the face of others’. His kind and loving heart poured forth upon his CRPS kindred and those he loved, often in scintillatingly original and muscular words.
He was injured at work. You’ve seen the news about corruption in New Jersey. Add to that the corruption of the Worker’s Comp system, and try to imagine for one minute what that might be like.
July 8, 2013
The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound,
The truth will set me free,
paper trial was the beginning,
soon the end,
your dark tunnel will remain,
Yes this once holy man,
now a fucked up memory,
only one will remain,
your future is in vain,
your lies you cannot hide,
you may run,
change your name,
DNA will remain.
The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound.
Cross Y 7/6/13 1.21pm
He was a good-looking young Middle Eastern man, so of course, the New Jersey cops figured he was dirty from the get-go.
Then his brother, who didn’t believe he had this disease, became a cop, and things got worse still.
I watched his family dynamics transform as his marriage with a green-card seeker fell apart, then his beloved family started to fail him, and then he spent the best part of a year fighting to survive in an increasingly hostile and impossible hail of abuse, predation, invasion, and brutality.
The system failed him. His lawyer failed him. His family failed him. The original newspaper articles, based on interviews with his family, trivialize and brutalize still further the brightest mystic-poet I’ve ever known.
I’m grieved. More than that, I’m furious.
I had to watch as his extraordinary resilience was pushed and pushed and pushed until every strand of rubber broke.
I had to watch as his stumbling command of English prose was used to throw away the meaning behind his words. Judges and doctors alike could hardly be bothered to listen, and certainly couldn’t be bothered to believe him. Those of us who knew him had to watch as his posts wove between intelligent determination and raging despair, as time after time after time he was thrown back from what properly belonged to him.
His wife stole $30,000 of disability checks. His wife dumped him as soon as her immigration status was assured. His wife pushed him down off his weak leg.
Guess who went to jail? It wasn’t his wife. Try to imagine cold, sharp steel cuffs snapping tightly on CRPS wrists. You can’t. The world isn’t supposed to be large enough to hold that much pain.
August 6, 2013
The color of my eyes have become
the mountain I cannot climb,
the west brings the rainy days,
the east brings the heat,
So I wait,
I’ll give you my night,
I’ll give you my site,
I’ll give you my last breath,
The color of my eyes have become
the mountain I cannot climb,
Protecting what’s remaining,
Adapting each day,
Earth is distributing,
New rhythm for humanity,
Voice your feelings,
Full moon of greatness,
Hidden lights reflecting,
Illusions of the underground,
Transformation of natural field,
The color of my eyes have become
the mountain I cannot climb.
9.42am 8/6/13 Lost soul
His brother’s police pals broke into his room (or were let in by his parents), stole his thumb drive, plowed through his poetry and his belongings, took his personal belongings, hacked his hard drive and his accounts. When he said he was going to install a spycam for evidence, his parents got him involuntarily committed to a public psychiatric hospital in New Jersey. They did not treat his CRPS, which was, after all, all in his head. They treated delusions that didn’t exist and a paranoia that was a perfectly rational response to his ghastly situation.
He got in line for emergency housing, but the wait list was at least 6 months long — for emergency housing. A combination of Governor Christie and Hurricane Sandy saw to that. The emergency housing and homeless shelters in New Jersey have been utterly gutted.
Three weeks ago, his father attacked and strangled him at a barbecue, in front of others. He posted a picture of himself afterward, with a bleeding bruise under one eye and big red welts around his neck, with the distinctive engorged look around the eye-bones (remember this is a former Emergency nurse writing this.)
His mother stood by and watched.
Someone called the police.
The partygoers disappeared.
His mother told the police that her husband had not attacked Cross, but that Cross had attacked her — with a knife.
Guess who got the handcuffs…
In private, she later apologized, and said she’d write a statement retracting the police report and her statements behind the psychiatric report.
He was living with people who were actively trying to destroy him. His work was being invaded and stolen. His life was in danger. Not even his dog’s life was safe.
He had a sign posted in the rear window of his car: “We burn until there is a cure for RSD/CRPS.”
With perfect logic, he burned his car, before jumping to his death in the most beautiful part of the state. Of such indelibly poetic actions are myths made.
For him, there was no cure.
July 7, 2013
They Murdered me, I never
This disease is not imaginary. He was not crazy. He was perilously sane. He was a warm and loving soul with a shining gift of a mind, trapped in a fatally tightening spiral.
All he is now is a tragically truncated memory. What’s left is what we can scrape together of his work from our online conversations.
They keep saying he died of suicide. That’s not true. He died of torture: CRPS, institutional murder, and child abuse.
I. Am. Furious.
Cross, however, is finally at peace.
Reaching the Universe
Silence the past,
Silence the worries,
Silence the outside,
Silence the future,
Silence the self,
Silence the noise,
Silence the people,
Silence the voices,
Everything has left,
Faith in the now moment,
Faith that I am present to myself,
You are stripped,
You are Free,
You are Pure.
You are reaching the universe.
I’ve been invited to ride in the funeral cortége of the man I helped code last week. It’s a semi-public occasion, as he was a semi-public figure (which is why I’ve been cagey about details), so “yes” is not as simple as it sounds.
I seek public exposure the way other people seek whooping cough — every now and then, it hits, but fortunately, it’s rare, and generally causes no lasting damage.
I was silly enough to mention that I have a sub-par central nervous system to the extremely kindly person arranging the event — who was also my CPR partner at about this time last week. He nearly withdrew the offer on the spot, possibly raw over the possibility of another medical event.
It’s a bit strange to have someone else worrying more about my body’s reactions than I do. Kind of refreshing… but definitely strange. This disability has been so invisible for so long — a fact assisted by the sturdy stoicism so many of us live by — that I simply have no idea how to handle someone else’s concern.
To mitigate any need for worry on anyone’s part, I’m preparing for CNS stress on Monday. Here’s how…
I have found, absolutely consistently, that the key to preparing for extra events is all about berries and vegetables. All the vitamins in the world — which I think I’ve tried — can’t do quite as much good as half a bucketful of organic greens and half a basket of good berries per day. I just had a big farmer’s-market-fresh salad; I’ll have kale for dinner, and there’s steamed summer squash awaiting the next moment when I can handle a few bites. Wild blackberries are set for breakfast.
I’ll boost my multivitamins and antioxidants only slightly, since I already take about as much as my body can absorb. I’ll keep lemon balm (for pain flares and dysautonomia) and yerba santa (for nausea and nerviness) in my pockets.
I’ll do extra brain-training, which I’ll talk more about one day, but it’s basically about learning how to calm the central nervous system by sheer will. And t’ai chi. Lots of t’ai chi. Mental practice, if not much physical. I see a couple of Epsom baths in my future, stocking my system up on magnesium and sulphur to buffer this body a bit.
Funerals are for the living, though we think so hard about what the deceased would appreciate. I’m not sure why that works, but it does.
The peacocks left us a glorious side-feather.
It might come with me. It might not come back. I’ll see what it feels like the deceased would appreciate.
When I’m out in the world, my reflex is to shove grief into a bundle and push it aside, and try to act as if I don’t feel it.
It’s always surprising how much energy that actually takes. When I’m doing anything else that takes much effort, it’s nearly impossible. It makes me forgetful and clumsy, just like a pain flare.
When I was at t’ai chi class yesterday, shoving and pushing one way with my mind while I was shoving and pushing another way with my body was so exhausting that I was wringing wet with sweat. Then I remembered something I’d tried briefly before, and decided to try it for the rest of the class.
I mentally drew the grief into my whole body. The grief turned to sadness and stretched out into every muscle fiber, every moving part. And I did t’ai chi with a body that was swarming with sadness.
It was, above all, peaceful.
I certainly wasn’t as tired. The sweat vanished as if by magic. I don’t even remember it drying on me.
The important thing is, I wasn’t expressing sadness in any deliberate way. I didn’t move more slowly, or try for any effect. I moved more deliberately and with better focus, because I was integrated. My body was filled with sadness, and I moved that body through the t’ai chi form.
The point of t’ai chi is to clear things up, straighten out what needs straightening, and separate muddled body parts and muddled energies into their proper alignments. Therefore, the sadness got a heck of a massage, and by the end of class, it was like it had been processed into something more wholesome. There wasn’t nearly as much sadness, as such. There was a lot more peace. There was a sense of strength I can’t put a name to.
I must add, as a footnote, that it’s been a long time since my feelings were capable of unshadowed joy. I have learned to cultivate a certain shallowness of mind at times, so I can be insulated from the deeps and be simply happy in the moment.
Therefore, when I say that I was happy as I left class, understand that it was a deep happiness. The shadows were very much a part of it, but that was fine. They were in the right place.
I read, years ago, something from Ernest Hemingway about his process. (I can’t wait to see which of my literary friends will be able to tell me where he wrote this.)
He took off, for months or years at a time, to live. In his terms, that meant running with the bulls, or falling down mountains, or shaking his sweat off into the sea. He had what most of us would call adventures, big hairy spans of eventfulness, in which he’d get immersed past the reach of words, and soak up sheer experience.
He said, mindfully, that it took weeks or months to regain his command of his wordcraft, but if he didn’t take the time out from writing in order to take time to live, there would be nothing to write about.
Needless to say, I’m envious that he had the choice. Lucky swine.
It’s safe to say that I’ve been living — if not in Hemingway’s terms, then certainly in my own — occasionally even past the reach of words, or at least past the desire to use them.
Some experiences are beyond words, but not beyond gestures.
Some things are a lot more entertaining in retrospect, and if it takes a few weeks or a few months to be able to write about them in the way I want to, well, the time will pass anyway.
Meanwhile, we are working simultaneously on getting me back my brain and getting darling J back his heart. Both are turning out to be a bit trickier than we’d thought.
HAL, you have an enormous responsibility on this mission, in many ways perhaps the greatest responsibility of any single mission element. You’re the brain and central nervous system of the ship…
Unfortunately, that sounds a little like famous last words.
I had the pleasure of explaining CRPS to a doctor who isn’t mine, who really wanted to understand. After listening to me for 15 minutes nonstop, he summarized it perfectly.
He said, “It’s a bit like HAL, in 2001.”
I asked if I could borrow that.
I’ve culled movie quotes off the web and my CRPS compatriots can say how breathtakingly parallel they are. In no particular order:
Dr. Frank Poole:
… That would pretty well wrap it up as far as HAL was concerned, wouldn’t it? Dave Bowman:
Well, we’d be in very serious trouble. Frank Poole:
We would, wouldn’t we. What the hell could we do? Dave Bowman: [sigh]
Well, we wouldn’t have too many alternatives. Frank Poole:
I don’t think we’d have any alternatives. There isn’t a single aspect of ship operations that isn’t under his control.
And that, ladies and gentlemen, is the central nervous system in a nutshell.
All right, HAL; I’ll go in through the emergency airlock. HAL:
Without your space helmet, Dave, you’re going to find that rather difficult. Dave Bowman:
HAL, I won’t argue with you any more! Open the doors! HAL:
Dave, this conversation can serve no purpose anymore. Goodbye.
We’ve all had that happen!
Just what do you think you’re doing, Dave?
Um, trying to survive?
[Regarding an apparent problem which HAL itself falsified] HAL:
It can only be attributable to human error.
Swine. YOU did this, CRPS!
I know I’ve made some very poor decisions recently, but I can give you my complete assurance that my work will be back to normal. I’ve still got the greatest enthusiasm and confidence in the mission. And I want to help you.
This reminds me of the “you have CRPS because you think wrong” school of thought. Right… thanks for the help… next time, suck the oxygen out of my atmosphere; that’d be a real help.
Hello, HAL. Do you read me, HAL? HAL:
Affirmative, Dave. I read you. Dave Bowman:
Open the pod bay doors, HAL. HAL:
I’m sorry, Dave. I’m afraid I can’t do that.
Because sometimes this system seems to get input, but it just won’t generate any output.
On providers trying to assess from outside:
X-ray delta one, this is Mission Control. Roger your two-zero-one-three. Sorry you fellows are having a bit of trouble. We are reviewing telemetric information in our mission simulator and will advise.
On trying different treatments:
Dr. Frank Poole:
Let’s see, king… anyway, Queen takes Pawn. Okay. HAL:
Bishop takes Knight’s Pawn. Frank Poole:
Huh, lousy move. Um, Rook to King 1. HAL:
I’m sorry, Frank, I think you missed it. Queen to Bishop 3, Bishop takes Queen, Knight takes Bishop. Mate. Frank Poole:
Huh. Yeah, it looks like you’re right. I resign. HAL:
Thank you for a very enjoyable game. Frank Poole:
Yeah, thank you.
Yeah, thank you. Sooooooo much.
This movie says everything you need to know about what it takes to deal with this disease:
It’s hard. Breathtakingly hard.
We don’t really know where it came from, and we really don’t understand why.
It’s crazy, and it does its best to make us crazy — and those around us.
It takes away more than we knew we had to lose.
We have to out-think it, even though it seems to stay 3 steps ahead of us.
Persistence — unvarnished, absolute, bloody-minded persistence — is key. Even when you feel you can’t, take a breath and make the next move. Keep working.
It seems impossible. It’s a harrowing thing to face, and has killed so many of us, in different ways.
It sabotages our efforts to improve things.
It’s worse than we could have imagined.
It really is like HAL.
So … Let’s remember who won.
Now a bit of Youtube for dessert, and a hopeful image for all in search of remission. Let’s pop those modules, one by one.