Cards on the table: I like to write. Maybe a little too much.
It’s inconvenient to have crapped-out wrists that limit typing severely and a voice just weird enough in accent & vocal fry to make dictation software stare back at me, blinking blankly, instead of capturing the marvelous flow of inspiration…
Yeah. To heck with that. I have to make it simpler.
I have a bunch of self-documentation templates and techniques which I’ve been meaning to write about, because we know how important providing evidence of your own experience can be and because… I like to write.
Sigh.
I’m not trying to make them pretty and I’m certainly not taking the time to make them generic or pare out the details of what I’ve tried and used over the years. I like doing that, but wanting to do that is what has kept from getting this stuff up… for years.
I’m just going to throw them at you instead. You’re all smart enough to take what you like and leave the rest. Have fun!
Note: All of my Self-Documentation by LivingAnyway.com is marked CC0 1.0. To view a copy of this mark, visit https://creativecommons.org/publicdomain/zero/1.0/
TL;DR – it’s a formal way of making this work Public Domain. Go wild. It’s yours now.
Pro Tip: There are good health tracker apps now, and one or two are very good. If they work for you, that’s good enough!
If, like me, screens hurt your eyes and tapping hurts your hands, you might want to consider the ol’ pen-and-paper method here.
We’ve got logs in color. We’ve got ’em in black and white. We’ve got half sheets, whole sheets. We’ve got tables, checkboxes, body maps… anything I could think of to make using these a low-cognition task:
You can see how my tracking changed depending on just how sick I was vs. how much activity I could (or, more often, wanted to) expect from myself. They show how my priorities and needs shifted, what worked for me well enough to track, and so on. Don’t worry that it seems rather personal – it’s all information; information is a good thing; good things should be shared. You might find a relevant format to start your own tracker from.
They’re in PDF format, for technical reasons. Conversion tools and PDF editing tools are available, some of them for free. Have fun, and come back here to re-download if you mess something up. This is a no-shame zone.
I’m having an episode of rock-hard insomnia. I’ve been having unpleasant dreams about an obnoxious person I used to know. I wondered if there was some concealed message in these recurring distasteful dreams, but, on reflection, I’ve concluded that my brain is just being an asshat. Sometimes it just is.
Having unpleasant dreams does cause insomnia for me; it seems I don’t want to go to dreamland when dreamland sucks. That seems fair!
So, I’ve dabbed lavender oil on my pillow, which calms my central nervous system and wards off nightmares. I’ve taken hydroxyzine, but didn’t even notice the window of opportunity, so that’s no good. I have one of my favorite books read by one of my favorite readers playing, but it’s just noise tonight.
Nope. Nothing.
I’m more relaxed, sure. Just nowhere near sleepy-bye.
What occupies my mind most of all, though, is how this period in my life, personally, is a halcyon time. Hard as it is in the shared realities of politics and funding, my personal life is filled with kindness, care, and love, more than it’s been in… oh lordy, let’s not go there. Years.
I adopted a young friend and they have brought their partner and siblings and pets into my life. Every time a new member of this clan meets me, my soon-to-be kid-in-law watches the exchange, nods, and says, “Everyone in this family falls in love with Isy,” as if it were the most natural thing and completely to be expected.
It’s an odd way to double your family size. I realize that. It won’t always feel so easy, because that’s life and being human. It’s simply that, after decades of grinding through this really bloody hard work of being alive with CRPS and all its atrocious friends & companions (dysautonomia and disability to start with and spiraling down from there), working through every challenge essentially alone for most of that time… this? This is different.
One of the kids is staying over to do my housework and help with shopping and cooking. They commented, insightfully, how glad they were that I experimented more with food when they were around.
I said that it’s easier because if I choose wrong and my fingers turn into sausages, I can still eat safely and recover without losing ground, because they’re there to take care of things. Also, my allergies are much better because of their work.
I said, “It’s safer when you’re here.”
I had one of those echoey moments when a bone-shaking realization hits you and you can either weep for the dreadful risks and hardships of the past or take a breath and be grateful for the present.
I took a breath.
So, although I need to sleep and I don’t want any more nightmares, I’m enjoying being awake because I can just wallow in this feeling that — after so long and so much — I find myself recognizing, with a rare purity, that these are halcyon days for me. Right now. I didn’t know I’d get such a wonderful time again, but I hoped for it, for many, many years.
I’ve had good times, don’t get me wrong! I’m good at finding joy and making the most of moments of connection and delight. I have friends and relatives I adore and can rely on. My life has loads of good.
It’s not the same as this feeling of bedrock beauty undergirding my daily experience. Does that make sense? It’s not just beautiful moments with loved ones making gorgeous spots among the daily crap. It’s a wholeness of greater safety and loving peace. The lovely moments string together until the brightness takes over.
As my adoptive grandchild sleeps in the next room, I find that I don’t have nearly enough fingers and toes to count all my blessings. I don’t mind being awake tonight. It’s a halcyon insomnia!
In one sense, it means making sense; that is, speaking & writing in a way that’s both rational and relevant to our shared reality. It’s not messy, shouty, or rude.
It also means being complete in itself in that moment. It’s when all the pieces that make up an idea, feeling, or statement hold together. It’s the opposite of fractured or flailing.
It can seem like a high bar, especially in a country where the system of education has been under siege for half a century, the economy is teetering, and the leader is sending soldiers into cities to attack people that he thinks disagree with him. (If they agreed with him before, as many did — Southern California used to be deep red, despite Hollywood’s reputation — now, probably not so much.)
The opposite of coherent is incoherent.
So, as I lay here waiting for my body to come online and hope we get to be vertical in the next hour or two… and as I watched my mind flicker and flash among the upheaval, anguish, and uncertainty in my country, my loved ones, and my own future… I realized today’s word had to be “coherent”.
As I mulled it, I felt my mind coalescing into sanity again. I found myself reflexively doing the stretches that keep my legs working. I found my sense of what’s my stuff and what’s others’ stuff re-establishing itself. I found myself feeling fortunate again, which I am, because I’m safe and housed (and safely housed) and I live in a charming place where I can get my needs met.
The whirlwinds keep whirling. It’s their job. I think of being in a bright, bouyant column of air filled with those of us who hold each other up. The energy here holds us together instead of tearing others apart.
In the midst of the storm of chaos, I hold myself to the word “coherent”, and coalesce into myself. The winds may throw me around, but they don’t pull me apart any more.
Spoonies, you know how we sometimes drift through the day? If we don’t have an external demand shaping our efforts — kids, work, methodical spouse or housemate — then, for some of us, getting through the day can be a matter of bumping or lurching from one need to the next (use toilet, refill water, rustle up food, manage an appointment, negotiate for a ride, do the self-care things that require that up-front energy to make them happen, organize recovery periods from each of those activities…)
Yeah.
An old friend of mine reminded me that there can be a thread running through the day, in addition to the usual “what’s the next task for survival and coping?” —which, let’s face it, gets a bit grim.
We can suggest to ourselves what that day’s thread might be.
This can line our attention up on it, and make the day less annoying and, in some ways, more fruitful. It also comforts the brain & spine with a sense of supportive purpose.
That’s worth a lot.
I mull it over the night before and find myself with a short list. Next morning, I pick one or two.
This also gives my brain/mind the supportive sense of being cared for at the beginning and end of each day.
I picked two this morning, but I can only remember one: calm. Picking “calm” as the thread for today is particularly good, because there’s a lot to do before I get a molar cut & chiseled out of my head with hopelessly inadequate pain control this afternoon, and thinking about that is not calming, but it’s going to happen and it needs to happen. I get to figure out how to mitigate the horror and so forth, and stay in my skin (so to speak) while I prepare for a testing few days of hard recovery.
Because I chose “calm” for today, I’m taking the time to write this, instead of trying to cook soft food, drag out the vacuum, shower, and make tea & take my pills, all at the same time. And doing all of them badly, if at all.
This word for today is providing a good anchor to hang onto as anxiety and the foreshadowing of so much more pain tries to wreck my mind.
It’s not that things are going to be anything other than what they are. It’s just that it’s not actually the end of the world, the wound will heal, and I can weather that process. I remember that when I reach for the word and idea of “calm”.
This is the 4th day and the 4th word since that conversation. It has improved my ability to get things done that are time sensitive, and it’s helping a lot with getting through this testing day.
I used to do this years ago. It’s amazing what we forget.
I’ve already vacuumed and breakfasted, and did them well enough (my vacuuming kit is in the picture below. Check out the padded suede gloves to cut the vibration from the handle!)
Now for tea, pills, quick washup. This is do-able.
If you’re chronically ill to the point of being disabled, you’re probably the sort of person that things happen to. This is something that insurance companies used to have data for, so nobody can tell me this category doesn’t exist. Besides, I think I am one!
Long story short…
Cashier’s checks can disappear into the void, but — if you know a little terminology — it’s possible to get them out again.
Note: this is based on the US system. The concepts broadly apply, but tend to be implemented differently elsewhere.
Lingo and key points are in bold.
When you get a cashier’s check, the money is taken out of your account and put into the bank’s GL, or General Ledger.
The GL is a kind of “sandbox” that they can use to move money through in a way that protects the cashflow, regardless of what else happens in your account. It’s strictly temporary and has to be zero’d out at the end of each day.
Whatever else you do, check 2 things on that cashier’s check:
Who it’s made out to (get them to read it to you if necessary).
How much it’s for.
If either is wrong, push it back across the counter and make them redo it immediately.
The cashier’s check is drawn on the bank’s own account. This is why the account number on the check is not one of yours. It’s also why they’re considered more usable than personal checks: banks are guaranteed to have that money in hand.
If you take that check to another bank to deposit it, hopefully it’ll be credited directly to your account.
If not, here are some clues to follow.
I’ve spoken to 8 or 10 bankers in the past 2 weeks, 4 of them managers/assistant managers. (I don’t know exactly how many people were in a couple of those rooms.) Only one of them could explain this to me. So, might want to take notes or print this out.
If a cashier’s check is negotiated (in this case, that means “marked up and legally received”) by a bank, and subsequently denied for any reason, it goes into a magical 3rd space that few people even know exists. This is where things get interesting.
If anyone tells you — as people have told me — that a problematic cashier’s check simply vanishes and you lose that money, they’re wrong. Don’t put up with that.
1. If the check was negotiated by the receiving (2nd) bank before being denied (this is rare, and requires at least three people to be asleep at the time!), then call the issuing (1st) bank and ask if it shows up in their system as having been cleared.
But wait! There’s more.
2. If it has been cleared, then next, the bankers need to look for what’s called a Fed adjustment. Naturally, the Feds keep a hand on the tiller of bank transactions. When a balance sheet is not right, they make a Fed adjustment — which does not show up in the usual account information, as seen by the front-line staff! — and gets parked in the 1st bank’s own accounts somewhere else.
PRO TIP: Try to get a trace number, or else (like someone sitting in my seat right now), you might wind up waiting still more days to track that money down definitively.
Information about a Fed adjustment is not available to the usual banking staff. Access to that info is available only to specialists, and it’s often contracted to a specialist 3rd party.
The bank’s Accounting department might have access if they know they’re looking for a Fed adjustment. The Operations department (if they have one) will have access, because they have to handle policies and procedures and stay legal & proper.
The 2nd bank’s 3rd party specialists can access that info and tell you where it is. The 1st bank’s specialists may not see it without a trace number.
It exists and it’s their job to find it.
Once you’ve established whether the check has been cleared by the 1st bank, and you have found the right person who can look up Fed adjustments, then you’ll know where the money exists: either in the 1st bank (most likely) or possibly in the 2nd bank. But now you know.
Remember.. It won’t be in any of your accounts, it’ll be in the bank’s own area. They have to look for it differently.
4. Next step is to notify the bank/branch manager where the money is, and ask them to credit that money back to your account.
If that doesn’t go well, play Duelling Bank Managers: go to the bank that doesn’t have the money and, from the manager’s office, call up the one that does; the manager you’re with can ask them sweetly & precisely how to find it and get the money back to you.
This is one of the things that speakerphone was made for. Wonderful way to clear the path.
5. This is the worst part: the Fed adjustment may not land back in your bank (let alone your account) for 30 days. Then you can do whatever you like with it.
My 1st bank, now that they know where the money is and are sure of receiving it in time, are giving me a free loan on that basis, so the money is in my account now and I can go get it at last.
I’m gasping. Absolutely breathless.
Warning: verbatim quote — “the squeaky wheel gets the grease”… so if you’re working with a bank that isn’t culturally meticulous, be prepared to do a lot of squeaking.
I’m hoping the car dealerships will take cash, because I have jumped through enough hoops in the past 2 weeks, and I do need my own transportation.
Having crashed and burned in a (for me) spectacular manner, I’m being (ahem) encouraged by many of my nearest and dearest to stop pretending I’m so much healthier and stronger and more multi-systemically resilient than I am.
My underlying state of health is not good, and I hate discussing it. It’s tiresome and depressing. That said, ignoring it obviously doesn’t work for long. Need a 3rd way.
I’m pushing 60. Time to stop pretending I’m 34… which was my last year of what I still reflexively consider my normal health & athleticism, and it was also when this pain syndrome was laying down its first tracks. Between multiple bereavements, recurring respiratory infections, and repeated courses of megadeath antibiotics, my nervous system was primed for disruption.
As one friend said, “We habitually present a version of our pre-CRPS selves” and, outside my 4 walls and the privacy within, I don’t seem to have anyone else to be yet. How can I exist without coming off as hardy and buoyant? I don’t know what that could even look like.
I go out and do things in public view, then crawl home (nope still no car, yes it’s been all of 2025, yes I’m struggling more all the time, don’t ask) to recover in private. Those are my 2 gears. I’ve recently developed a half-gear of being in my garden plot, but that now requires a lift because the bus is too brutal – although I love that it’s currently free!
It feels like I’m waiting for the world to allow me to heal. If that sounds self-pitying, you’re probably right. I’m new to un-masking, and it’ll take practice to get the tone right – un-self-pitying, but fully honest for a change.
Showing showering
I’ve been drawing cartoons of lives like mine for years. I was waiting to put them into a book, but they’re doing no good in my folio and some have been there for way too long. I’ve also drawn communication tools. It didn’t seem time to share them before, but it sure does now.
First up…
Taking a shower on a bad day:
When I’m rash enough to shower on a bad day, it feels kinda like this.
This picture isn’t finished, but it’s good enough. You can enlarge it to see the way the (to my senses) appalling changes of temperature wrap around every individual drop’s path all the way into the drain.
I couldn’t find a way to draw the way each drop feels like there’s a hook in its head, physically latching onto and dragging energy out of my body. That doesn’t hurt (unlike the hot/cold nonsense) but boy, is it exhausting!
So, when you can tell (pew!) that I haven’t had a proper shower or even gotten wet recently, you’ll be able to surmise that the pain has been higher than my ability to cope with the intensity of the experience.
For the record – I gritted my teeth and showered & washed my hair yesterday morning! I’m taking a bow, frankly. I had a familiar audiobook to listen to, which sometimes can keep my attention off those hot/cold and dragging sensations.
Keep in mind that everyone’s pain is their own. CRPSers don’t all have the same experience in the shower, because, for some, it’s awful in some other way. Not all days are this bad, even 24 years in. Nuance is key. Also, boundaries.
My pain isn’t yours, and nor should it be.
The idea here is to give you a chance to look on, without looking for anything more than your witness. That right there is a powerful thing: just being seen.
Don’t take it on. Just adjust your expectations, maybe, as I’m learning to do myself.
If you’re a bio-nerd, read up on how humans go from mad mitosis to having skin and organs. It is absolutely fascinating – and explains a lot about neurological variations!
Communication tool: moods & self-care
I’ve also got a delightful communication tool to share.
As we all now know, my mood may not reflect the outward, apparent situation. There can be stuff burbling away that affects me in ways I might not realize, but others can.
I came up with a rough drawing of a rating scale for my housemates to use (when I had some) and it was a huge help to get that objective feedback – without anyone being defensive! I’d sometimes find the magnet moved to a different number, then go away and take care of myself until I was pretty sure it could move back up. Usually, though, they felt free to call me over and show me where my behavior was, and I loved their honesty. Did me a lot of good.
I particularly like how it indicates when a level of irritation is appropriate. That was a mind- blower for me, as I’d been telling myself that it was always bad to be unpleasant. Nope! Sometimes it’s perfectly appropriate!
I think, and hope, that sharing these images and tools will:
A. Be useful, and
B. Get it right through the concrete (taps own head) that I need to come up with ways to live and engage with the world that are congruent with this reality.
My inner Cleopatra, queen of de Nile, needs to get back to Egypt.
Cheers and virtual hugs are most welcome! I’m daunted by this job. I mean… I value honesty enormously… just not about my weaknesses and disabilities 🤣
One of the characteristics of CRPS and some other longstanding brain-driven pain conditions is the occasional personality transplants which, especially combined with memory-holes and perceptual shifts, can really do a number on relationships. This situation is called the Beast. Medically, it’s considered part of the territory.
I’ve been absolutely smug about my aability to stay away from the Beast. Since regular psychotherapy is part of the gold standard of treatment for CRPS, I’ve prioritized psych care — from professionals who have a good understanding of trauma and PTSD, since actual specialists in central pain are so rare, and trauma/PTSD is a good model to start from. That care hasn’t been possible for most of the past 5 months, and I’m taking stock of how much I’ve lost in that time, now that I’m back on the schedule.
I can count on 3 fingers (now 4) the times I’ve been the Beast in ~21 years. (I’m fuzzy on my first ~4 years of illness. It was a blur.) The most recent of those times was due to a neurotoxic exposure. One was when I lived in a mold infestation I hadn’t mitigated yet. One was during a particularly hectic trauma period. The current one was after I decided to make an extended, extravagant physical effort in not-very-safe air. I really thought I could pull it off, and just rest afterwards.
But these are reasons, not excuses. I hurt people who didn’t have it coming at all. I injured relationships I care about deeply and intend to protect. Today’s event cuts particularly deep.
“Why would you do that?” is an unanswerable question. If you don’t have this shit disease, it can’t be explained. All I know is that I felt myself being pulled under, not recognizing fractured memory and wacked perceptions. I grabbed for a rope. Didn’t think what it was attached to, because I thought I was drowning.
Mind you (adds that inveterate shit, Sarcastic Sister), my feelings are such that I’d rather be dead than hurt my loved ones. But this is not the time to say that, because it makes no sense from the outside, in light of what they just experienced from me.
Need a moment to process this.
So… diligent psychoemotional tune-ups, reasonable pacing of activity, and a safe environment are not at all optional. That rubric is my best insurance against the Beast. What I know from seeing my long-term survivor cohort is that there’s no guarantee I’ll be able to avoid the Beast forever. So, I’m wrestling with this reality and not really wanting to be here for my life. (“I’d rather be dead than feel this way” was a state my late BiL and I could bond over.) Many of my fellow CRPSers know the feeling, and it eases my soul ever so slightly to know it’s part of this disease experience, and not because I’ve actually become evil.
I’ve done what I can for now. I’m off home for meditation time, if I can, and a familiar show if I can’t. I have to remember how to rest and how to push myself no harder than is good for me. I have to take recuperation very seriously and basically expect nothing from myself for a week. I have to manage this terrible storm of feelings in the absence of a stable central nervous/ endocrine system. I hope to have the chance to rebuild a couple of relationships. We’ll see if that’s do-able. Fun times.
I’m looking for some more positive message to turn towards or even something to lighten this a little, since the point of this blog is “living anyway” in spite of what this craptastic disease does to people. The only thing I’ve got to offer right now is the passage of time and the hope of some recovery… within the context of this horror-show snowballing around me, around us all.
I’m going to give organizing my mental database a try here. The aim is to pick one broad topic each month and cycle through them in a year. I’m doing it the way nurses and doctors are taught to do it: head to toe.
Physical assessments have to go from head to toe, every time, without exception. This makes use of the brain’s basic tendency to work in patterns. If you assess every patient from head to toe, every time, then the variances are easier to find (because your brain is so dialed into what to expect at that point in the pattern) and it’s a lot easier to get to a sound differential diagnosis.
If I go to the doctor with a sore knee, the doctor is still going to notice my level of consciousness, attachment to or detachment from my environment, track my gaze and whether the sides of my face are more or less equal, differentiate how much of my limp is because my knee hurts and whether any of it is because my balance is off (all of that is about the brain), notice my breathing pattern (lungs), become aware of blood- flow problems (heart) showing up in my skin, and checking to see if I’m “splinting” or bracing against pain or weakness in my abdomen (g.i/g.u. systems) and hips (ortho, right above the knee).
An experienced doctor does most of this in 1 to 3 seconds, because it’s a head- to- toe assessment every single time and they can just let their pattern-matching brain (which is powerful and primal) take care of it and send up a flag to their conscious mind if anything is abnormal.
The medical term for “head to toe” is “cephalocaudal”, which literally means “head to tail”… but humans don’t have much in the way of tails, and our bodies keep going for quite a ways after them. I’d love to hear from my Latin-knowledgeable readers what the term should be!
I’m recovering from a migraine, which is very on-topic, but I’m not yet up to writing much. I thought I’d introduce this new structure, which I hope will be a bit simpler and less overwhelming than “what am I wrestling with right now that I could usefully write about?” There’s so much to write about, it magnifies the intransigence of the empty page. (Writers know what that’s like.)
This is about the messy intersection of CRPS & the mechanical aspects of central nervous system dysfunction, and dealing with those effects.
I’m writing through the waunnng, waunnng, waunnng of a ringing headache. I’m hoping that if I hydrate, urinate, and (carefully) ambulate enough, it’ll pass faster. We shall see. Meantime, I’ll do my best to pass on some useful info.
The brain and spine are supposed to float in cerebrospinal fluid. We are supposed to stay hydrated enough to keep those sensitive tissues from grounding out.
We have 2 kidneys – each one capable of filtering twice the water we actually need – as a practical accommodation for the fact that, throughout history, most water was filthy and needed lots of filtering.
We have 4 times the kidney power we need for a busy, messy lifetime. We’re supposed to use them! The more we use them, the healthier they can stay. They love to do their job.
When we’re properly hydrated, our brains and spines can float comfortably in their spaces. When they float comfortably, they have plenty of shock absorption protecting them.
Spinal care
Dr Faye Weinstein taught me an important part of brain & spine care.
I had too little cartilage in my knees, so I had developed the habit of dropping into chairs instead of using my legs to lower myself neatly.
She hated that. She visibly flinched, and one day she finally cried out in audible distress, “Stop doing that!”
I stopped doing that.
Just as she had predicted, my baseline level of misery became less.
Once I was out of the habit of dropping into chairs, then, when I did it again, it caused headaches and sometimes back pain (depending on my hydration, of course). I was no longer used to enduring this as part of my daily quorum of yuk.
That was (checks watch) over 10 years ago. My brain and spine, oddly enough, haven’t gotten any younger since then.
Yesterday (after a couple of days of being “too busy” to hydrate properly), while I was turning to admire something across the street (a boat or a building; I forget which)… I stepped off a step I hadn’t noticed. One step down, caught myself, barely stumbled, no harm done. Massaged my neck a bit, to ease the slight jamming on one side. In my formerly healthy system, that would have been that. Probably would have forgotten about it instantly.
But now is different.
It took 10 minutes for the icky feeling to set in at my low back and back of head. It took a little over 2 hours for the whole brain-fog and uncontrolled body pain to take hold. Chronic CRPS really is wired into the whole neurological system, and one of the hallmarks is how the spine takes on an anti-life of its own in the face of any signs of disrespect.
Clearly, my spine felt seriously disrespected.
Content warning – skip this description if you’re squeamish about pain:
We know that I have no effective pain control left to me, with genetic tweaks making narcotics disgusting (they make the pain worse, cause untreatable nausea, and trigger horrific mood swings), and mast-cell activation making NSAIDS unbearable (they cause a soft-tissue-wide inflammatory pain, making it feel like shards of hot glass are hammered into all my cells).
So, how to approach this?
There’s a super-concentrated lemon balm extract that helps calm down inflamed nerves. Lemon balm has been used to calm nerve inflammation & pain for, approximate thousands of years.
Since all the nerves coming out of my spine are feeling very hot right now, I’m taking that about every 8 hours.
Note: check this against your meds, especially with GABAnergics. Ask your pharmacist to check their standard herb-drug interaction charts.
Pain salve on my spine and up my neck before bed, and also on arms/ shoulders and hips once I tried to sleep, helped noticeably.
It was a rocky night, but I’ve been getting as much water down as my tummy will tolerate and, now that my kidneys have been flushed 3 times, the headache is noticeably easing.
Conclusion
We can’t be alert every second. Our senses are so distracting at the best of times. Finding ways to manage these impacts is unspeakably important.
Long-term pain patients tend to get self-concerned to a degree that could be obnoxious normally, but it’s a legitimate self-care attribute in a life where one wrong move or one wrong exposure can destroy weeks or months of work.
Image by neurollero on flickr, CC share-alike attribution license.
One benefit of this self-attention is learning how to manage and mitigate the problems that arise by catching them early, and sharing the info in the hope that it’ll do some other painee or their caretakers some good. We have to learn from each other. Nobody else is as qualified.
I was chatting with a close friend about a week ago. He’s placed to be on top of current events with a depth and nuance that my vomit reflex can’t stand. We had an interesting conversation which was mostly me chirping, “But what about…?” And him giving me a really good update on stuff I’d never be able to stay upright long enough to research.
My brain was twinkling away on the incoming tide, sorting the info and soaking it into the correct metaphorical tide-pools and littorals.
I soon realized that, though I was sorting words coming in, I was having a terrible time getting words out. I didn’t realize, until that moment, just how completely that parsing a thought may feel verbal, but might not be.
I thought I was wording just fine as I thought, “okay… this goes here with news ownership; this goes there with political gamesmanship from Brand X; this relates both to Brand Y and legal process” and so on.
On the outward flow, all I could get going was along the lines of, “so, uh, how’s the… thingy… you know, from… what’s-his-name…” and I realized I sounded immeasurably more mentally inept than I felt.
I wanted to say, “look, I’m still in here and I’m taking in everything you say. I just can’t operate the outgoing current right now and my word capturing is going great, but my word finding seems to be underwater.” I could not fund the words, of course.
It’s been grimly fascinating to me to find the many ways a brain can go off-line in bits & pieces, and how my mental activity and neurological activity have these unthinkably complex ways of associating and dis-associating within themselves and between each other.
Everyone’s brain is linked up in completely unique ways. Just imagine what it would be like to work with people who could relate exactly what is and isn’t working and when. It’d set off such an explosion in the advancement of knowledge that.. wow.
A pointless note of wistful longing
It’s a real pity I can’t handle any schooling, let alone medical school, because this is exactly what neurologists need to know about to make their lives – and, boy howdy, ours! – a lot more useful and interesting.
As it is, patients are considered inherently unreliable in the medical mind, and, although that’s extremely insulting, it’s not crazy within physician context: the precision of thought and accuracy of terminology is rarely there, because so much training goes into commanding the information the way a doctor does.
Conversely, it’s adapting through a traumatizing cascade of brutal experiences that creates a skilful and well- informed patient. Training that’s so high-level it amounts to nosebleed seats for one; autodidacticism that makes Richard Francis Burton look like a playboy (oh, wait..) for the other. (When I can find someone who’s as brilliant an autodidact but not a moral negative, I’ll revise that sentence.)
It really is a different language and these two rather fragile mind-sets have trouble reaching across the cultural gap. (Anyone who thinks doctors aren’t fragile should just try correcting a few. It can get rough.)
I think the ratio of truly secure doctors to the rest is about the same as truly adept patients: they are definitely around, but can be hard to identify even when you’ve got one. It takes hard work and a lot of fearless honesty in both cases.
Buckling on my helmet. I’ll get it from both sides now.
The onus winds up being on the traumatized patient, who usually has more clock-time to prepare for the visit. The doctor has to turn around and deal with someone equally intense in 2-7 minutes, so they have to stay mentally free to do so.
Yes, let’s hear it again for corporate medicine and its unholy offspring. So efficient, such a great use of limited resources… not.
There isn’t (yet) a cultural context in the field for cross-training as a patient and as any sort of licensed practitioner. That’s the key deficit.
Practioners get culturally demoted when they become patients (which is disgusting, but predictable in such a heirarchy) and patients get shoved into a little cultural pocket for things that fall between weird and interesting without fully qualifying as either.
Fun, eh? It’s one stellar example of the waste in the system.
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