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.
TIL (Today I Learned) is a new category that lets me capture the random sh-…stuff I learn while “living anyway”.
Today’s fun topic is, “You don’t have to hire a lawyer when your employer is screwing you. You can contact the Attorney General’s office and let them handle it.”
This is based on Massachusetts. This is widely considered a blue state, but it has usually had a Republican governor until recently. What we are, is a well-educated state. We tend to vote for smart people. That suits me.
The A. G. has a job to do
From an ordinary American’s point of view, the Attorney General’s Office exists to protect you from bad-faith dealings with those who are in a position to screw you pretty badly: employers and businesses. Not only do they need to follow the law, like we all do, but they need to keep their activities from skating too close to the edge of it.
The A.G.’s job is to provide access to protection from so-called “bad actors”, and to intervene when it’s needed.
In case you wondered.
First, we’ll look at employment law.
The A. G. handles employers who behave badly to employees
If your employer is:
Stiffing you for pay or benefits you’ve earned,
Crossing the line on hours required or how you’re supposed to work,
Failing to provide safety gear for the job, from PPE to jack-lines and harnesses,
Refuses adaptations(*) for your sight, hearing, movement, or typing problems so that you can do your work – which you’re qualified for and able to do with reasonable accommodations,
Etc.!
Then…
Start by collecting your evidence – emails, work schedules, time cards, photos or footage, text messages, relevant pages from the company manual, and anything else that helps to tell the story. Get time and date clues in everything, whenever possible.
Write out the problem. (It’s a great idea to write a first draft with all the emotions and bad language first. It’s good to get that out of the way to clear the mind a bit.)
Facts, facts, facts, one after the other. The facts alone will tell your story. A word or two about your essential motivation is good, though – e.g., “Fearing for my safety, I refused to do that task without proper gear” is a useful statement of what informed that decision. Consequences matter. That’s a fact!
If you peel off the emotional impact of what was done to you, it leaves All The Room for the emotional impact of events on the reader. That is a lot more powerful than all the descriptions of feelings ever.
Then, take a look at this page and upload your report when you’re ready
They’ll be in touch and either take the case to court or guide you on whatever next steps are most appropriate. They may advise suing and will suggest lawyers who will take the case on contingency – meaning, you give them a 30% cut if you win (even though they do most of the work), or nothing at all if you lose.
(*)A note on adaptations and disability
Thanks to many years of effort by people like you & me, the Americans with Disabilities Act was passed in 1990 (1 year before I became a Registered Nurse) and then, after 18 years of experience, was updated in 2008 (3 years after I became too crippled to work) so that its requirements were clearer and so there were fines and consequences for not following it.
Since disabled people have been one of the last legally and socially acceptable targets of prejudice (especially at work), this legislation was historic indeed.
This is the most accessible of the articles I found about this.
Those of you who are familiar with wheelchair-riders know just how expensive, valuable, and necessary these things are. Some of you (like me) know people who’ve lost the use of their chairs because of damage by airlines. It’s unthinkable to us, but it happened a lot; was finally addressed; and now that protection is at risk. Call your legislators if you care about this:
If you’ve had a disability – or other right-to-access – issue that seems illegal or seriously wrong, then go to the Civil Rights page of the AGO, where they handle all the issues of social injustice – disability, religion, race, gender, and so on – and follow the procedure:
Hot tip: if you’re being screwed over by a business you bought goods or services from, the same approach applies: go to the AGO and funnel your issue into the Consumer Complaint division.
It might take a couple of months to get to the top of the pile, but they will open negotiations if you’ve written a clear, factual complaint. (I’m naturally assuming all my readers would only submit legitimate reports of unjust treatment, though most sites will feel compelled to remind you not to submit frivolous complaints. As if we have that kind of time!)
When they call you to start negotiating, be patient and tactful – yet clear. No name-calling the opponent, no matter how much they deserve it. Let the facts speak for themselves. Walk through each step of the process and let it unfold, because the negotiator hasn’t been what you’ve been through and they need to learn what that jerk you’re dealing with is like, for themselves.
I say this only because I have a little trouble with it myself. Pain-brain makes it hard to be detached, but it’s worth the effort.
In short…
The Attorney General’s Office has your back.
If they don’t, we’ve all got a much bigger problem.
When I was working in the software industry, the term “fully-qualified” entered my world in a marvelously exact way.
The specific programmatic terminology here is from the Java programming language. Don’t let it bother you – some things are just details.
Java uses an organizing category called “classes” for unique bundles of code that define all the features, characteristics, and actions that this bundle of code needs in order to do what its name says it will do. (Other programming languages may have other terms.)
Each class has to have all the parts it needs to know when it’s wanted, what it needs to look for, what it has to do, when it has to stop, and what (if anything) should happen next.
If a class is completely and properly defined in all these parameters (and sometimes more), then it’s called a “fully-qualified” class. It can be trusted and can be used across multiple regions.
Not all classes are fully-qualified. They’re okay for quick tasks and have a place in the Java ecosystem, but their usefulness is limited. Those classes, those hunks of code, usually have to be filled out to be fully-qualified or else deleted when the time comes to prepare a program for market.
Any robust program needs an awful lot of classes of many different types. It’s inefficient to have too many similar classes — you’ve got to have different classes to do different tasks. All that they have to have in common (besides logical coherence) is that they must be properly constructed so they can do their task — whatever their particular task is.
This diversity of classes is essential to good programming.
You’re starting to see the metaphor here, aren’t you…
Some people view all others as fully-qualified human beings.
Some people do not. Only a few meet their idea of fully-qualified — that is, complete and correct and fully able to function as they should. This, naturally, means that they have specific and limited ideas of what humans need to do.
When people beat on those who diverge from their idea of truly human (those targets are usually women or gender-bending or people with disabilities or people of color or poor people) they’re acting on the fact that they don’t see these other people as fully-qualified human beings.
The people doing the beating-on are hung up on the feeling that these people are not properly “written”, that they’re missing huge hunks of “code” that limits their function — and makes them fair game for being taken out, sidelined or deleted.
We aren’t all the same, and nor should we be. It’d be a terrible program if we were, and would quickly choke on its own redundancy, crashing itself and possibly blue-screening the whole show.
Maybe we should go back to the old CRT colors and make it orange-screening.
I’ve been chewing over something for awhile and recently realized that it might be time to apply that much mercy to myself. It’s a more coherent, whole way of thinking about what I discussed in some panic in my previous post.
Complex chronic spoonies tend to drive ourselves hard because we really have no option (the exhausting, but relevant, internal chorus of “adapt or die, figure it out or eff off, push through or give up, fight or fall” is inescapable) but does it need to be so ubiquitous?
A lot of these posts have been oriented on finding light through the cracks, on putting life itself into center stage somehow. I think I’m cooking up a new way of doing that.
The most basic of basics
Many years ago, when I was working as an emergency nurse, I realized that (despite the hype & excitement) our job was fundamentally simple: give people another chance to get “it” right.
Whether “it” was keeping up with their meds, staying off of whatever was poisoning them, choosing better company, finding the healing path that worked for them – whatever. There are fewer “its” than their are people working on them, which is why we are never the only one with our struggles.
That made more sense inside my head. Sorry.
People wind up in the ER because something bad happened, and usually human ignorance, stupidity, or violence was involved.
That’s not about blame. People don’t always get to choose their company or can’t always bear to be alive without some kind of buffer between them and their situations. Even if they did do something colossally daft (like the rich kids who decided to cut out the middlemen and drive 350 miles to buy their drugs from the distributor; 4 came down, 1 eventually went back), it’s not right to require mistakes to be terminal if they don’t have to be.
Of course people with heart disease should take their meds even when they feel fine, and get periodic blood tests to show that it’s working. Of course people with diabetes should keep an eye on their blood sugar and stay on their meds. Of course primary care when you first get symptoms is better than going to the ER when you start to fall to pieces… but it’s awfully hard to find a primary doctor these days.
Life is complicated and increasingly expensive. ER work really shows that.
Anyway, I saw our job not as holding back the sea with a broom (as some do), but as giving individual people a chance to figure out how to do things better. Lift properly. Drive sensibly. Stay off the hard stuff. Find an appropriate doctor who’ll listen – and then talk with them.
Nobody likes to be told, so reciting these mantras to them doesn’t often make sense. Oddly enough, it can be a lot more meaningful when you’re meeting their worried gaze as you administer the medication or fit their c-collar or go over the x-rays with them. Or tape and dress the wounds in their wrists.
There is so much we don’t control… sometimes we just have to remember what we could control, and how to put that in reach. It’s not easy, but it’s often very simple. When the universe is dropping its big hammer, where do I need to be when it lands? Under it? Or can I get off to one side? What will I have to let go of in order to get out of the way? Is it worth it?
The answers to this aren’t always obvious, and “worth it” to some is not the same “worth it” as for others.
What that looked like in practice
We had a lot of repeat customers. Some of them I wound up zipping into body bags, because what it took to get out from under the universe’s hammer was either too far out of reach or not ultimately worth the effort of letting go of what they were clinging to. They mostly didn’t want to die, but it wound up being too hard to do what it took to live.
I’ve got to respect that. It’s not for me to judge.
Some of them I saw come back just for ordinary bump-and-owie stuff, showing me the healing scars (inward or outward) of their old struggles. There are no words for the sense of sunrise I felt on seeing them. It made the rest worth doing.
It was all their work… but it was up to us to give them another chance to get it right.
My chance
I absolutely love to work. Being useful and productive is the bomb! If it weren’t so important to me… well, I probably would not have come down with CRPS, which stemmed from relentless overuse injuries in my case. I could not take a break to save my life. Whatever it was, I had to jump in with both feet, arms flailing and shouting “incomiiiiing!”
I imagine I could be pretty tiresome that way. Belated apologies to my friends and colleagues along the way!
I’ve been wrestling – for years (how embarrassing) – with recognizing that having fun… recreating… seeking diversion instead of merely a change of work… I’m not even sure how to put it… but that loose, apparently useless, seemingly non-productive use of my time, is really good for me.
It lowers my stress levels. It reduces my pain. It raises my spirits. I don’t know if it gives me back any of my lost abilities, because I find it incredibly hard to do and have never been able to hang onto the easy-going vibe long enough to find out.
What with one thing and another (I’m an American living stateside in January of 2025; IYKYK) I have a powerful inward pull to go somewhere glorious – and affordable, thank you very much – and simply muck about enjoying the diversions. Play tourist for once in my life. Soak up pretty colors and different sounds. Be warm every single day.
And, if I get bored or don’t like it well enough, simply go somewhere else.
At this point, a lot of places are more affordable than the U.S. (more on that later) and, for all the challenges of travel in this body, I do plan on doing nothing but recover and enjoy myself for a good while afterward.
…It’s a weird idea, honestly.
Good thing I’m used to maintaining and cultivating relationships via the internet, after a quarter century of having to do so. It makes love more portable.
It’s still a weird idea. Wherever I go, I still bring myself along, and I know I’ll have to leave my compulsiveness behind with my snowboots. That’s unnatural, but I’ll learn.
Learning to let go of that deep attachment to being productive and useful is not the same as not being productive and useful – but it could give me time and space to heal my much-clobbered systems.
That might be the point.
Rest and play is widely regarded as essential. I think that’s the “it” that I need to work on getting right. Get out from under the falling hammer of overdriving a broken system.
Without descending into the morass of modern U. S. history and politics, let’s just say that I’d like the first months – up to half a year – of the new regime to happen with me being somewhere bearable, where good produce is a lot cheaper and the medical care both stable and affordable.
None of this is likely here, where my food prices rose about 30% during the harvest season and there is much loose talk and planned chaos around Medicare and the dole (which I depend on to stay alive) – not to mention the cost of everything rising by 15-60%.
The pundits and those who follow them tell me not to worry, because there are rules and procedures “they” have to follow.
Given the Mump track records regarding rules and procedures, all I can do is smile sweetly so as not to worry my loved ones, and let my mental gears turn more quietly.
Hot tip #1: a tariff is a tax. These get passed on to the consumers, not sucked up by the companies from countries exporting to us.
Hot tip #2: as we’ve seen so clearly over the past 5 years, industries don’t just raise costs in line with their own expenses, but jack them up to see just how much the market will bear. Given a captive market, this has gotten really ugly. Remember eggs last year? The sub-prime lending fiasco leading to the 2008-9 crash? Yeah, it’s an established pattern.
So anyway… here I am: if I stay in one place, I’ll be wrestling hard with un-meetable expenses (my dietary needs are simple, but not cheap) and a constantly-cycling urge to run away. That’s neither stable, healthy, nor fun. Been there, did that, threw away the t-shirt.
I didn’t grow up in one place, or even one country. I’m not mentally stuck here, and I don’t believe I have to put up with the scrambling anxiety or insufferable expenses to come as the Mump Regime and its trail of chaos gets itself through the initial reality-checks.
I’ve been toying with the idea that it’s healthful and good to be warm, stable, and happy. That takes adjusting to, because so much of what makes me feel anchored to the world is about work. I love to be productive. It makes me feel superbly grounded to be useful/helpful to others. This is very compelling… but as far as my daily choices go, doesn’t have a lot to do with being warm, stable, and happy.
It does have to do with abusing my eyes and attention with falling down back-lit rabbit-holes and trying to turn the swarms of information floating around in my brain into streams of relevant words, pertinent to the question I’ve just read.
But I’ve got serious limits and, as it turns out, I am much more useful and productive after I’ve been taking really good care of myself and playing and recreating and being happy outdoors – a lot.
This doesn’t sound like computer-gazing, which is how most of my work happens.
This focus on making myself happy is a weird concept, and I’m still working out a lot of the details. I mean, not even details – I haven’t settled on where to start; even my departure date is unfixed. Getting the right people in to keep my place clean & warm while I’m gone is kind of a big deal too. I’m not prepared to move and won’t sacrifice my sweet little home – not until I’ve got a much better offer in hand, anyway!
Anything could happen. I’m trying to keep breathing properly as I say that.
American Thanksgiving is the 4th Thursday in November. I had a gift that day – a difficult one, but I’ve been unwrapping it and wondering ever since.
My phone (which has my i.d. and my bank cards in it, and it provides my only internet access) disappeared on Wednesday evening.
While this is momentous for anyone these days, I have a disease-specific reason for being harrowed by it:
I listen to audiobooks to drown out my brain’s ongoing response to the ongoing pain, wonky signaling, and that disconcerting imbalance between what I need and what I have or can get to keep my environment safer for my body. To me, it sounds like screaming; I’ve heard others describe it other ways, as crunchiness or a kind of rattling wobble or other experiences entirely. My sensory processing apparatus decided that it’s a constant, ongoing scream from someone too upset to be the least bit self-conscious. Audiobooks and internet rabbit-holes are fantastic ways to manage this, partly by drowning out the internally-generated sound by the external one that I want to hear, and partly with the power of distraction.
Pain, reasonable & irreconcilable anxiety about how I’m going to get through anything from this day to the next chapter in my life, and the occasional neurological crumping (when my cognition shuts down and my coordination goes to hell, so I can’t make ideas or hold things) … all of these are best addressed by comfort and distraction. For me, books and memes and contact with absent friends are all good for that.
For Thanksgiving – when everything is shut aaaaaaaall day – I had none of that.
I just need a moment to process this.
It was a sad day. I couldn’t make or receive any of the usual holiday calls with people I love. I couldn’t go out to eat, and the previous evening I’d had to put back all the holiday food I had in my cart and get only what I could pay for in the cash I had on hand.
I had the sweetest visit from 2 friends (I explained why I had nothing to feed them with) who made it their mission to check on me twice daily until I was en-phoned again, and that helped me get through several hours much better.
Apart from that, I had little to do but hear the screaming, and wonder what I would do next year in a country that has voted for unprecedented chaos that, on the showing so far, is liable to shatter a large part of what makes it possible for me to live. The litany starts off like this: “The level of daily chaos to come is unbearable to think about. Every time I read up on the latest plans or appointments, it gets worse.” Not good for dysautonomia, among other things.
At the end of the day, I began to apply a bit of cognition to this experience (as you do) and realized something important…
The screaming was a whole lot quieter than it used to be; than it was, say, a year ago.
Last year, it was a lot quieter than when I first moved in here, right before the Pandemic. That was a tough time and the screaming was so loud I had to play the audiobooks and dvds at a fairly ridiculous volume to get the benefit. (The neighbor knocked on my wall a couple of times.) That volume might be partly why I now have ongoing tinnitus, a ringing in my ears that’s always at a different pitch and volume from the inward screaming. Clearly, my brain decided not to confuse the two.
Also, I noticed that my mind had actually recovered some ebb and flow!
There were times of day where it was natural to fix things, other times for doing something creative, times to sit and be quiet and times to move around and chat with the cats…
Natural texture and dimension in my mental activity, which the constant audiobooks had smoothed out and neutralized since they came back until that day of enforced quiet.
To the able-bodied and -minded, this is perfectly natural. It didn’t used to be for me. I had 10 or 12 alarms set throughout each day to tell me exactly when to do each kind of activity, because that mental texture had been quite, quite lost.
I got through 2 nights and a day without any alarms. I survived, and I also realized that alarms are jarring.
Who knew??
It turns out that my slowly-healing autonomic system has finally agreed with me that a stable diurnal schedule is a good thing to do, so I wake up within the same half-hour every day, without needing to be kicked awake by a series of 3-4 alarms.
The phone climbed out of its hiding place the next day. (Of course, I had already thoroughly checked there.) I canceled almost all of the alarms, except the one for feeding the cat.
I can make a short list for each day and get through it by riding those mental waves – and being kind if I can’t get them done at the very time that I wish to. It seems that being kind to myself knocks down a number of stress-related barriers.
I’m still digesting this new experience of the world. It’ll probably continue evolving over some time to come.
It’s not exactly normal to have such a significant level of recovery when you’re close to pushing 60 and sitting on 25 years of pain-related neurological disruption, including 20 years of dysautonomia.
So yeah, it was a sad day and not an easy one, but what a gift it turned out to contain!
I needed such a gift. My life is about to change drastically, and it’s up to me to work out which path to take through it. None of them are easy, but some could be more rewarding than others.
Can’t wait to see, not only how I’ll screw up, but what I’ll learn from it!
I’m going to try something new, as I navigate this tricky shift in life: asking for input and advice from people outside my head and its rabbit-warrens of associated ideas.
I know, wild idea… and for that reason alone, probably worth trying.
My first nursing job was on an HIV unit in 1991. We were in the 2nd wave of the med mixes, so there were some treatment options. We knew which precautions were necessary, and when.
Those precautions had been newly dubbed, “universal precautions”. HIV was the last global pandemic that had a powerful effect on ordinary patient care, legislation, daily activities, travel, everything. The lessons we learned were rolled so thoroughly into our lives that we no longer think about it.
Anecdote from the front lines..
At that time, it was all rather new. Old nurses were afraid to go near any patients on our unit. We had about 80% novice nurses, an unheard-of proportion on a specialty ward in a nationally-ranked hospital in a major city! We had to pay attention, and we had to learn fast.
Because we weren’t abandoned enough already…
Our rather young nursing preceptor had bone cancer in her knee. She went in for surgery as soon as the last of us (me + 1 other) got signed off on training.
But wait, there’s more: as soon as she came out of surgery, she wrote a message insisting they pull the plug on the machines and let her die. Husband supported that, in tears.
Considering how close to hysterical she’d gotten 3 days earlier, when I tried to dig in my heels and tell her I was not ready to practice autonomously and might need more training after her op; and how strenuously this woman — who’d done little but put me down for weeks and express frustration at how slow I was — now insisted I was ready, really ready; and considering how improbable that post-op scenario is, in so many ways… I think she had planned it well in advance. Most expensive euthanasia ever.
Her 2nd-to-last words to me were: “Change your socks. They should be white. Bright colors are not professionally appropriate.” And gave me a fierce look. She came back for a nice goodbye, telling us we were all “good nurses” despite our occasional touches of color (a laugh and a nudge for the main transgressors, me & a fabulous fellow), before she turned and left the unit for the last time.
She’d been working on me about the sock thing for weeks. Slouchy cotton socks in gem-bright colors were still fashionable; drove her crazy.
She was the only one who hated them. The patients, the other nurses, and my immediate supervisor thought my gaudy ankles were delightful. I was referred to as “the one with the socks” and everyone knew. (I also introduced the fanny pack to nursing life. Nobody had heard of it before I showed up with a white, wipe-clean, bleachable one. You’re welcome.)
It’s possible that I got a packet of white socks, as a gesture of respect to that tough young woman… which quickly got grubby-looking, as white socks always do on me, and thus were eliminated from my wardrobe as not being professionally appropriate.
… That was largely irrelevant, but I’ve stopped suppressing my storytelling urge. There are just too many; they leak.
Back to the job of being a complex chronic patient.
It’s surprisingly logical — it just takes a long time to figure it out. I hope this will shorten that course for whoever reads this! There are 3 key principles to follow, and 3 sets of jobs, one for each kind of person involved in each case.
Three key principles
My patients on that ward taught me a lot about how to navigate hard, complex, intransigent illness. There are 3 key principles:
“Grandma was right” kinds of things: fresh air, activity, nutrition, sincere friends, learning all you can — they make a huge difference.
Find the light, or life, in the cracks. Doing #1 makes that a lot easier.
Communicate with others in the way they need to be communicated with.
That can be a tricky one, but I’ve got a lot of material on it. Some of it is here on this blog. And one day I’m going to complete and organize that collection of communication tools. (Any day now…)
Three different sets of jobs
It’s important to remember that you can’t do everything. I learned that (and keep re-learning it) the hard way.
There are specific realms of responsibilities which the important people in this situation have:
My job.
Significant other’s job.
Provider’s job.
They’re perfectly straightforward.
My (the patient’s) job
A note on terminology: some object to the word “patient” as dehumanizing. I’ll let you mull over what it means to think of someone who needs care as less than human. I don’t.
I’m sticking with the word “patient” here, because it describes a person who has specific, unavoidable experiences with alterations in their bodies, care providers, and whatever health-care system they have access to.
Complex chronic patients have a depth and breadth of experience with these things that most people simply can’t imagine — and nor should they. We wouldn’t wish this on anyone.
So, as a patient, my job boils down to this…
Take care of myself; take care of my responsibilities; take care of my relationships. All this includes having fun and seizing little joys!
Manage my illness. This includes: meds, nutrition, activity, learning about the disease and how to manage it, self-care (whatever that turns out to include, but it always includes pacing: alternating activity and rest.)
Track important signs, symptoms, and changes, and document them meaningfully.
Share this info with providers and significant others when it makes sense to.
Find useful ways to communicate with significant others & care providers about changing needs and abilities.
Make all my appointments on time, every time.
Contact my Dr for anything I need their support with: changes, meds, treatments, info.
Get through the days one at a time. (Thinking of the whole span of my existence is not my job. One day at a time is plenty.)
Find life in the cracks: notice the little beauties, regularly do something I enjoy, stop and smell the flowers.
Make time for fun and happiness. It makes me so much stronger!
Be good to my loved ones, whatever that means and within my limits.
Know that I’m the subject matter expert on my body, and hold myself responsible for managing it accordingly.
Significant other’s job
These two principles can be used by people at work, at home, on the playground, wherever. Very simply, “believe me” and “avoid making this harder, whenever possible”.
Believe me
Nobody — trust me, nobody — can make this stuff up, and there are far too many expensively-educated people working on this for it to be imaginary.
If you can’t believe it, then try pretending you do for awhile, just to test the concept, and see how that works.
Learn about the disease. There’s good info out there and I, or my doctor, can help you find it.
If you’re really important to me, come to an office visit with me and ask the doctor your own questions.
Avoid making this harder
Communicate with me about changing levels of activity and needs. I hate to keep saying how broken I am, so let’s come up with a code to pinpoint the different levels of broken that I could be.
Then, I don’t have to talk about how close I am to puking or crying or passing out, you can know anyway, and we can get on with things appropriately.
That’s what I really want — to be as productive as possible for all the time that I can; to be as good a partner/employee/friend/family member as I can.
Provider’s job
Another note on terminology: I’m old enough to remember when physicians, who were relieved that good schools for PAs, NPs, and APNs were starting to flourish, advocated for the term “provider” as a collective noun, encompassing themselves and the advanced-practice professionals who potentiated their work and multiplied their efforts.
That worm has turned, and now it’s not so popular with physicians.
Please allow this old nurse to use the term with all the respect it originally included, in memory of the brilliant and capable physicians who taught me to use it as the inclusive term of choice.
The provider’s job (as of course you know) is threefold: keeping the larger view, providing appropriate care (of course), and providing info and guidance.
This is sometimes easier said than done, because every time I see you is a rough day. You hold more than the power of life or death over me — you hold the power of tolerability or pure Hell. Thus, it’s natural for me to be a little fragile, possibly overwhelmed, in our conversations.
I do my best to be prepared and “keep it together”. I want to make the best use of our time.
Due to the additional insults of pain and CNS dysfunction, I can be subtly or even grossly impaired when I most need to be responsive, intelligent, and clear.
Given all this, please know that your kindness makes a great difference in my life.
Here is what I hope for, from my providers:
Consider context. Notice where I fall in the statistical ranges and how might this affect my care; help me distinguish between reasonable vs. unreasonable efforts, as well as watchable vs. reportable signs/symptoms; steer me through that intersection created by my medical & physiological peculiarities in one axis, and the statistical probabilities generated by reams of studies and years of clinical practice on the axis which crosses it.
Prescribe appropriate tests, ancillary care (physical therapy, occupational therapy, speech therapy, and so on), and medications.
Respond sensibly and kindly to concerns about meds, therapies, and changes in my illness. (Fragile egg here.)
Let me know what I really need to know about my condition, meds, or treatment, before I leave the room (virtual or 3-D), so I neither ignore something important nor over-study and confuse myself. My responsibility to learn benefits from yours to inform me. Also, it helps me to know the right keywords.
Be the subject matter expert on the scientific and clinical knowledge-base for the illness I see you for, and be willing to figure out relevant context that my other conditions create.
See this article about just how fabulous an experience it is to have a physician who does all that. It’s such a relief and such a joy. Thank you from the bottom of my vital signs for doing what you do.
All 3 working together = best possible situation
When complex chronic patients can monitor and communicate effectively, prioritizing our care while keeping life in center stage most of the time; when our loved ones can coordinate around our limits, allowing us to be at our best, considering; and when doctors apply their staggering breadth of knowledge to our particular situations with attention; we have a fabulous chance of doing as well as possible.
I like doing as well as possible. I have a lot to give and I want to be able to give it — that said, my care comes first, last, and always; it’s the only way!
Thanks to significant help and support, good friends and loving family, and some real rock-stars on my medical team, I’m well set right now. I’m almost afraid to admit it, because I don’t want to rock the boat…
And here we are
There you have it: the 3 key principles and the 3 main jobs of living/working with complex chronic illness.
I know they are that fundamental, because I’ve had a few providers almost plead with me to come and participate in their patient support groups, specifically so I could talk about it with other patients.
Well, here we are, sharing this information all over the world! Send this article wherever you see fit. I’d love to know what your support groups think about it.
Patients, caregivers, loved ones of complex chronic patients, doctors, P.A.s, A.P.N.s and N.P.s… feel free to comment. This is about all of us, after all.
Over the past 14 months I’ve gotten a look at every house I found that was:
1. Already built,
2. In my price range & size range (600-900 sq ft),
3. Judging from the ad, might qualify for a first-time homebuyer loan (which I could get, because sailboats don’t count as homes in this context. Considering how much work sailboats are to live on, I think that’s just precious.)
All 4 of them.
In 14 months of sporadic, but persistent, looking… only 4 houses turned up within my parameters.
Well, actually, only 3 were in my parameters. It just looked SO pathetic, I threw in the house I looked at that taught me just how horrific it could be to buy a repo. I don’t know why I felt a need to count that.
So, really, 3 houses. Only 3 even seemed possible, but they weren’t. They turned out to be marginally too fuddup for the loan, too moldy, or too close to too many Isy-toxic things.
Broke my heart.
The Market
In all this time, there were 2 houses I wanted to view that did, in fact, meet all 3 criteria, but they had a buyer and 5 alternates before I even had a chance to reach for the phone. Good, small homes go FAST here! (If anybody’s looking for steady returns on moderate investments, consider building some, eh? I’d be happy to project-manage that business. It’d be a great example of doing well while doing good.)
Double the target size and price point, and I’d have LOADS of options. The market is littered with 1200-2000 sq ft pocket palaces for a quarter to a third of a mil. Those buyers can be as fussy as they please around here.
The Reality Check
Here are some grim financial realities which bring new depth to the yawning chasm of the imp-possibility of me finding a safe home:
1. Frail, reactive body on SSDI.
NOTE: It’s illegal for anyone on SSDI (which normally brings in government-sponsored health care) to have over $2,000 in personal assests (exempting already-owned house and car), ever at all, even for 1 day, or they can stop your health coverage.
You read that right, folks. In the USA, poor and sick/disabled people are brutally barred from saving up, even in the interests of getting a car or home if they don’t already own one. (That was a GOP mandate. How’s that for fiscally responsible? /headdesk/)
2. Only legally-recognized close relatives are allowed to contribute to a mortgage. No matter how well connected the PDSP (Poor Disabled Sick Person; or, if you’re from California, Person who’s Disabled, Sick, and Poor), or how wide and generous their circle of friends, *nobody else* is allowed to contribute, or else the PDSP *gets no loan.*
NOTE: this was nominally an anti-terrorist maneuver, to keep cells from easily acquiring property. Which makes even less sense than most modern American anti-terrorist legislation… ‘cuz somehow the financial data-mining that’s actually been built into your central processing chip since the turn of the millenium, and is now supplemented by every data stream you dip into, is magically unable to track the source of these gifts, in this one realm of financial transactions? Huh?? And somehow it assumes that terrorists can’t find other ways to meet their logistical needs — a counter-factual assumption, at best. I grew up with actual terrorist threats framing our daily lives; this mickey-mouse magical thinking irritates me at the best of times.)
3. First time homebuyers (c.f. the snarkery in the opening paragraphs) get automatically lined up for a loan called FHA, which banks appreciate because the loan is insured by the feds. All houses bought with that kind of loan have to meet certain standards before purchase.
NOTE: this is generally good, as it ensures that first-time homebuyers start out in a code-compliant home. For me, it’s disastrous, because the standards don’t account for occult mold or proximity to fossil fuel output and EM radiation — but they heavily favor fresh paint and conventional insulation, cheap and reasonable ways to meet the code criteria. These amount to life-or-death issues for me.
4. Ordinarily, it’s extremely difficult — in fact, well-nigh impossible — to get a “one mortgage” or build loan, which you can use to buy a lot and have your own home built on it. Too many people have taken the money and run, or gotten overwhelmed by loads of decisions and delays they’re not used to, or lost their way somehow. This leaves unfinished properties dissolving where they stand, and frustrated loan officers doing much the same thing.
Now, when those loans ARE made, payouts are structured to keep the owner one large payout behind. The idea is to make sure the owner has “enough skin in the game”, a metaphor I always hear in this connection, which is peculiarly apt and especially painful for someone with CRPS.
Also, you need a builder on board who is prepared to advocate with the bank. How many builders really want to face a freaking bank just to get a picayune, weird little job like mine?
Also, my builder would have to be someone comfortable enough with low-tox building to help me be rightly understood when I talk about using high-grade materials in what’s otherwise a cheapest-possible design.
The Current Scenario
So, here’s what I bring to the table:
1. Frail, reactive body needing a small home with nonstandard finishes. Have some resources and loads of information.
2. Some relatives are able and willing to contribute, thank heavens and them!
3. Friendly mortgage broker, glad to work with me and guide me in inserting my info into their system in the most fruitful possible way. (Applied Mortgage in Northampton, MA. I recommend them very highly!)
4. Doctors willing to provide letters on letterhead stating that I do, in fact, have demonstrated needs that affect my safest home environment, and it would be good to work with me on that. (If only their fax machines worked.)
5. Info and analysis by the bucketload, which only needs to be extracted from my brain and the web and dumped out into tables, spreadsheets, breakdowns, overviews, digests, summaries, etc., about just what’s needed and just why it matters and what it really does to me when it doesn’t happen right. With references and bibiliographies for key concepts and key resources. In colors and patterns that are meaningfully coded to the info. In as many copies as they like. In origami folds, if that would help. Tied up in a neat little ribbon — green, as a hint. Sound good?
Of course, given 3 functional hours each day, putting that together is so much easier than it sounds… NOT. If I don’t go out and run errands or appointments, or eat anything the least bit wrong, get only a short walk in as exercise, my voice recognition software has no trouble with my allergy-hoarse voice, and I take 20 minute breaks every 30 minutes absolutely faithfully, I can try to eke that out to as much as 5 productive hours per day!
Who knows, it might happen!
Sysiphus was an amateur.
Because, folks, poor though I am, tiny and unprofitable though my mortgage would be, simple as my other needs are.. there is NOBODY ALIVE who could have more skin in this game than me. And I need the chance to prove that to the bank.
More and more lately, I miss my Dad. I don’t know what he would have done or what he would have taught me in the process, but if he were alive, I would be safely housed. “Legitimate need? Doing your best? Got a rational budget? Okay, let’s figure this out.”
He was very staunch about facing hard realities and, working capitalist though he was, had many thoughtful conversations with his daughter about “from each according to his ability, to each according to his need.”
According to him, he loved that idea.
It was his favorite dictum about distributing resources, and he dearly wished it were realistic on larger economic scales. He worked in a world where it wasn’t useful, but he clearly wanted me to know that he honored it as an ethical guide.
He articulated to me how he used it as a parenting tool with his three gifted, demanding, and wildly different children. He said he’d never parent me the way he parented Older Brother, and Younger Brother was yet another proposition; he tried daily to treat each of us according to what he understood of what we each had, and what we each needed. He knew his perceptions weren’t perfect, and so it was a constant process to keep trying to improve his insight, as he kept trying to keep up with our development.
He explained all that nuance, admitted all that depth of thought and his practical limits, to his 11-to-13-year-old girl… in the late 1970’s. In some ways, he was way ahead of his time.
Through all the stormy years we had afterwards, I never forgot that, at root, he had that much faith in my mind and that much trust in my morals.
He’d be so proud of my diligence in all this.
Now, all I need is a reputable builder who’s up for this job, and enough working-brain-time to put all this medical and practical material together — preferably in the next week, due to the timing of the hard credit-check.
Neither is really in reach, but I’m here to keep trying. Wish me success!
Bonus Points
If I can get this done this summer, and recuperate in a safe home for awhile, then I’d like to put together a plan to make small safe homes all over these hills; I know people who can find the funding, and I know customers who’d be banging our doors down. It’s just that I can’t properly or legally use that program for my own benefit, so I must have my own home first.
Tell you what, I bet the whole process could be neatly documented and charmingly presented in an attractive book on the subject. It’d be one blueprint for a win-win way to help stabilize local neighborhoods, reduce blight, mitigate housing crises, generate middle-class jobs, stabilize local economies, reduce medical costs, and make many people more calm and content. All of which is economically positive in so many ways… and morally spotless.
As I’ve said before, much of brain-retraining has to do with speaking to the primitive parts of the brain in ways it can’t ignore.
Being overwhelmed is very common these days. So, this tool is helpful for far more than just my fellow painiacs. I originally laid this out for someone else dealing with very different issues, and realized as I did so that it was a darn good tool and I’d have to remember it for myself. It has already been a help to me, so I hope it helps others as well.
The State of Overwhelm
I can tell when I’m in the state of Overwhelm because life is just a big old mess of decisions and problems and unresolved issues which are so toweringly massive they stop making sense. My usual ability to sort and prioritize and manage information freezes up, and my brain skids off into the ditch.
Once I’m in Overwhelm, it’s unreasonable to try to reason my way out of it in my usual way. Each thought is blocked by half a dozen issues backed up against it.
I’ve got to simplify. Not just that, but I need to SUPER-simplify — break it down into binary questions — that is, questions with only one of two possible answers. It’s the only way I can start managing the pile.
(What follows is a technique used in several disciplines. I’m avoiding jargon and simply using the words I use in conversation.)
The roadmap out of Overwhelm
When I was rebuilding my credit, the first thing to do was to figure out what I really owed, and what someone else was supposed to pay. This is a good template for dealing with Overwhelm.
First, whose job is it, really?
When I get overwhelmed, it’s hard to tell what’s my responsibility and what’s really someone else’s. It feels like this:
All the jobs are kind of muddled around in the space and there are too many jobs and not enough space.
When I draw a mental barrier between the two, things suddenly start to clear up:
Notice that, at this point, I don’t need to know who the “someone else” is; the first step is to be clear about whether it’s my job or not.
Managing my care?
Ordering tests and prescribing meds?
Testing those meds on my system, tracking their benefits and drawbacks, and updating the prescriber?
Keeping the dishes clean?
Keeping the outside steps de-iced?
(It’s my one outdoor job, and my partner does everything that I can’t and a lot that I shouldn’t, so I bundle up and take care of the steps without a whimper.)
Second, is it something volunteers can do or is it a professional job?
This is an important distinction.
When in doubt, upgrade.
Volunteers
Take care not to abuse the skills of your volunteers. You may know lawyers, counselors, accountants, and so forth, but that doesn’t make it right to ask for free professional services from them, except under unusual circumstances.
If those who help me out aren’t being paid (either by an agency/employer or by me), then they’re a volunteer, regardless of the skills they have.
I tread as lightly as I can on my volunteers. It’s an important long-term goal not to alienate them, but to keep them comfortable with me and happy to stick around.
Professionals
The corollary is, I have high standards for my professionals, and hold them to those standards with all the clarity-with-courtesy I can manage. I have no hesitation about firing someone who consistently fails to measure up.
I put a lot of legwork into choosing my doctors. Here’s an overview of the process and links I used a few years ago: How I find my doctors
It’s certainly worth the time and effort to find good people who can do justice to your life and your needs. The question is whether you can find the slack. I hope so.
Examples
Fix the heater?
Put us up for a night until it’s fixed?
Give hugs, tea, and sympathy when I’m recently bereaved?
Train me in how to get my brain to reprocess deep pain (and the staggering scope of loss associated with it) without short-circuiting?
This is definitely not for volunteers; too much knowledge about neuropsych and too much investment of time is required.
Professional level brain & mind care
For some things, talking to a friend, doing something strenuous, or meditating a lot, is enough to allow a person to heal heart and mind. Life itself is generally a good therapist.
Some things are too complex, too deep, or too dangerous for amateurs. Despite our longstanding social taboos, people with recurring trauma (like central pain or abusive relationships) or PTSD (like survivors of war or child abuse or those who’ve been through worker’s compensation or disability applications on top of a devastating condition) are right and smart to get highly-qualified care for resolving the damage that these things do to our minds and our brains. The damage is not imaginary, and sheer force of will is not a great tool for healing it.
It CAN be healed, even the worst of it. It does NOT require chewing over the past; in fact, that’s often avoided in modern trauma counseling, because that can do to the PTSD brain roughly what our recurring pain does to CRPS brains.
Some techniques DO re-map and re-train the brain to make room for more stability, more healthiness, and move even a CRPS’d brain closer to a normal state.
Less pain! More joy! Less instability! More abilities 🙂
Some keywords for finding relevant mental health professionals: trauma-informed, PTSD, pain psychology. These are jargon terms that usually indicate the professional understands how these profound experiences affect our brains, and how that can be rewound or reworked to a better state.
Another thing you can do
It helps to vote for legislators who see the value in health care, including mental health care. Conservative estimates say that each $1 spent on care saves between $10 and $100 in downstream costs (ER visits, health costs, police activity, lost productivity, lost wages, family impact, etc.) Middle-of-the-road estimates place the savings much higher.
Something to think about, in times like these.
Find your legislators here and let them know what you think:
In the US, here’s where you find national, state, and local legislator info: www.usa.gov
Canadians, here is your national parliament contact info: http://www.parl.ca/
Please feel free to add contact info for elected officials in other countries in the comments below. It has become clear that voting is a health-care issue.
The same thinking that underlies racism, sexism, and classism underlies the thinking that says, “Hey, let’s get rid of health care coverage for those who aren’t federal politicians, well-employed, or wealthy.”
The bottom line is treating people as things, and money as the thing of most value.
All humans have something to give, which is only freed up when the basic needs of survival are met; money is a means of exchange but is, itself, neither food nor drink nor fuel nor care. It only gets us any of these things if everyone buys into it as a medium of exchange. That piece of paper has no intrinsic value.
Rational policy is based on the understanding that humans give and receive value, while money represents a part of that value. Corollary is, money must move around to gain value; letting it pile up in drifts and hold still is bad long-term policy, as Reagan’s advisors can now see.
“Trickle-down” assumed that rich people would spend. Rich people don’t spend. They save and invest. Thus, their money moves as little as possible, in order to keep more money coming back to them, where it stagnates further. The real economy (wages, employment, individual bankruptcies, COL, savings, home-ownership, etc.) is nearly dead in the water, but the stock exchange is doing better than ever; that’s how bad the disconnect is now.
With wages lower than a worm’s belly and the formerly-thriving middle class nearly all gone, most human energy is consumed by the struggle for survival. We have, in fact, enough resources and infrastructure that the only people who need to work are those who really want to (that would still be far more than half of us; stop seeing your exhaustion as laziness.)
Given the chance to survive, humans give back. It’s simply what we do. As some cities and a few countries have discovered, with housing, food, and care assured, creativity and productivity blossom. Value grows. Stability grows with it. So does the economy, by the way. Not in leaps and bounds, but at a steady, calm, non-bubbly, sustainable rate.
Weird idea, eh? I mean, who wants stability, right?
I’ll give you a moment to pull yourself together…
Keeping people feeling cheated, disenfranchised, and looking for someone to blame other than those who hold the scales, is a great way to kill that kind of success. Racism, sexism in all its forms, and classism are the key tools used to divide and conquer us.
By request, I’m pasting in a stream-of-consciousness post I made elsewhere about racism. It relates to “living anyway” because, as with having a horrible disease, having and not having race/gender privilege does NOT have to poison my life, destroy my chances for freedom-within-my-limits, or negate my right to find true joy.
I know you know this about me, but in light of the horrors of the week, I just want to lay this out there, in order to be absolutely clear. Ready? here’s some Isy intensity. (Is-ensity?) …
I abhor racism. I abhor it in myself above all, and every day I try to educate/inform/reflect/analyze/remove a little more from my own mind and heart. I screw up sometimes, and the guilt for every screwup never leaves me. (True. OTT, but true.)
None of us are free until all of us are free. That’s not polemic, it’s basic psychology. The thinking that pulls us apart is irrational and hostile to our individual and collective well-being. Take a course; take two; you’ll see. It takes real work to get through the mental blocks to understand that fully, and classes provide the guidance and support to make that task feasible. It’s worth it.
I take an anti-ism/liberation course or pick up an enlightening book once or twice a year at least, sometimes more if I need it. The reason is this: I shower every day or two, because if I don’t, the stink builds up; same thing happens to the mind of a White woman living in this grubby world. Gotta clean up my thinking, because it’ll inevitably get mucked up by living in my skin in this larger reality.
As long as Native Americans of all ages are systematically robbed and murdered and left uncounted, I’m hollering for justice;
As long as Black people are shot down like amusement-park targets, I’m a co-conspirator in Black liberation;
As long as Latinos are thrown out like trash, I’m a gringa curandera for the soul of this nation;
As long as Asians, from the Subcontinent or the mainland or any of the islands, are silenced, entombed in unmarked graves, and their history erased from these shores, I’m an impassioned teacher of history;
As long as … go on, try to think of a race this country HASN’T systematically trashed. Even Whites — cf. indenture, which has changed its name but not its condition since the founding of this country.
Think the rich are free? Imagine the underlying terror of knowing that 99% of the population would gladly end you and destroy all you cherish. (A bit like the rest of us feel about the forces they keep in play, but still.)
Want to know more? Use primary sources. Nothing is more telling, or compelling, than the words and images of those who were there. Want to know what the data are? Go to the proximal sources — ignore the pundits. Racism, and its toxic twins classism and sexism (including gender isms; graduate class on that coming shortly), poison all didactic thinking to some degree. Look at primary sources, and digest them yourself. It’s worth it.
None of us are immune from the effects of racism. Even loads of money only cushions you, as long as you can access its benefits; it doesn’t make you safer outside your circle. Speaking as someone who changed socioeconomic class dramatically, and rather quickly, I’m strongly aware of the value of having social ethics that don’t lock me to an income bracket or neighborhood.
Nobody, but nobody, is free, until all of us are free.
Hatred is no way to run a country, let alone a life.
