This is not a triptych

I’m a writer; I think in terms of story. I assumed I’d have some definite third stage of recovery from that breakup, but no, just more process.

Not just the emotional work of disentangling two mingled lives and learning how to be in the same room and hold a practical conversation in civilized tones, and not give in either to the huge love or the awful rage.

There’s the special spoonie stuff, brought to me by CRPS/fibromyalgia/dysautonomia/Hashimoto’s disease. Learning how to get everything done every hour of every day of every week, with little help, no encouragement, no prompting or reminding that I don’t think to set up myself on that increasingly irritating & necessary phone, no underlying love to smooth the steps out or to rest in the soothing of, between efforts. With winter coming on, there is SO much to do. He has come over a couple of times to help with that. How do I say thank you without weeping?

I noticed when we first met, before we were ever lovers, that my pain and brain fog dropped when he was within about 16 feet of me. Once we were partnered, that symptom-suppression held pretty much all the time.

So now, I’m doing all this with an additional physical burden of pain and, dear heavens, so much brain fog.

It’s a process. It’s a two-steps-forward-one-step-back process… and, frankly, those are pretty boring to read about.

So yeah, it sucks. And I don’t get to stop working on it. Spoonies rarely get breaks, and never get vacation time, from being sick.

Onward.

I got a cat. She’s just over a year old, and came to me not knowing how to eat. (The irony is so thick you could cut it with a knife.) The first couple days, her hip bones kept getting sharper. A mini dog came over and showed her how it’s done. That was the first big bump forward. Her hip bones are marginally less sharp now.
She’s beginning to learn that that “I waaaaant!” feeling means she’s hungry. I don’t know how she lost track of that instinctive message, but she would sidle up to her bowl and then skitter away with a little flash of anxiety.

Drama is emotionally seductive and magnetic, especially to the young. So, that exciting pattern needed interrupting. I took up her food for hours, so there was nothing to sidle up to and skitter away from. At first, I held her bowl down to reassure her, but as she gets more settled and secure, I leave her to it once she gets started, and stay quiet so as not to distract her. I spent the usual cat-lady hours finding food she liked. (She’s definitely my cat: she likes real food, not Friskies.)

She’s quite a beauty — flared cheekbones, cute little nose, huge eyes with heavy liner, a charming overbite. A bit like Geena Davis, but with whiskers instead of dimples.

I’m taking her out with me everywhere. She gets along with everyone, having met eight cats, three dogs, two squirrels, and any number of people, with roughly equal aplomb. She’s turning into a service pet; already, my increasingly sluggish reflexes (which have given me some scares while driving) are slightly less bad. Wand-toys FTW!

Time to get on with wrestling the requirements for another day into a set of hurdles I can probably clear.

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A week on, slightly shocky but keeping calm

Those of you who’ve been, been with, or treated addicts won’t be surprised to know that J’s story changed 3 times in a week, but I didn’t fall for it. He has not tried to come back, did not go to the deadly place, and is taking care of himself rather better than might be expected.

The fact that he’s not imminently in danger is a huge relief, actually. I can handle breakups — I just can’t handle mortality.

I looked back at my previous post and got a huge laugh out of the fact that I opened with one sentence regarding a life-shattering event and went straight into the nerdiest possible fugue about meds, care, and therapies that are affected by it. I’m not sure of the distinction between nerd, dork, and geek, but I’m pretty sure I’m all three, and that’s okay with me. The doc I sent that letter to is the brainiest of those, whichever that may be.

The feelings washing through me are as varied as you might expect. There are some ways I feel freed up — I finally got to rearrange the living room furniture, and it’s a vast improvement. Nobody to get all tense and cranky about moving his sofa location. I look back no the ways I’d just stopped making room for myself because it was easier than arguing. The last year and a half was a downward trend, the last year pretty bumpy, the last few months really rough, and the last few weeks we were together were frankly awful.

That, I don’t miss.

What I miss is that where he was, was home. I’m homeless in one sense, because he’s homeless in the literal sense. (He sure enjoys the camping, though.) I rarely had to scold him for anything because he could hear me yelling at him in my head; he’d give me the same pissy look my cat used to give me when he was scolded, and make the adjustment I wished he’d make, with no more than 5 soft words exchanged. He literally read my freaking mind.

I don’t know what he’ll do when the weather changes. Not my circus now. He’s facing the consequences of his own decisions, and one is that he has fewer, and at this point less attractive, options.

I found a person who knows how to get me signed up for things like help with the dishes and laundry and vacuuming, rides to my medical appointments, and other logisstical needs. The shuddering absence of J has left me with arms so overused and attention so wrung out that I had trouble driving safely home today. I actually missed a turn on a road I’ve taken uncountable times. Not reassuring, that. Fortunately, it was easy to correct.

As I explained to my passenger: I can pay attention to the road and obstacles around me, and I can control the vehcile I’m driving, and do both confidently; the rest, like where to turn, is a bit iffy.

The physical consequences crash on, no matter how calm I can keep my mind most of the time. The tearing, strengthless feelings in my hand tendons is pretty scary. My ashtma is acting up, a consstant background pull. I guess I’d better raise my antihistamine dosage, and make an appointment with my rheumatologist to look into that.

The emotions ebb and flow: bouts of anger, so seductive but I refuse to cling to them … I let them roll through and roll away; irritation; lovely memories; wry humor; noticing things he’d like; gaping wounds of loss; grief; the endless wordless cry of a mature heart that’s broken, like a descant that never stops. I let them roll through. I’m an old hand at loss. The trick is not to hide from them, and not to cling to them. Look at them, one by one or five by five as they come, and see them for what they are. Then let them go. Not easy, but so worth it.

Task focused is good. I have things on my schedule and things I have to do. I pay attention to the next task. It really helps. It’s okay to stay out of emotional space, something I didn’t used to know. It’s absolutely okay not to go prodding that open wound. I can work around it.

I was cooking up a frozen Indian dinner on the stove, anything further being beyond me and microwave dinners being disgusting to me (except rice-pasta mac and cheese, for some reason.) I sat there, stirring it gently, and taking a step back to look at the whole picture.

Aspects of my life are better. There’s no arguing, for one thing. I’m seeing my friends more.

Aspects of my life are harder. I have more creative impulses but less ability to do anything with them. The logistics of getting through the week are awful.

On the whole, my life is definitely worse without J in it. His jobs can be done by others, but the whole blooming warmth and joy and peace that he brought with him, until he gave into the “stinkin’ thinkin'” of addictive-mind, is gone, except in memory.

Having said that — having looked squarely at that — I let it go.

I remember the time I decided to give up on repeating my mistakes. It was at my first nursing job, on the HIV unit. I realized, imperfect person in a tough high-stakes job that I was, that I was probably going to make mistakes. I made an agreement with myself not to repeat them, but to pay attention and learn, and when I screwed up, to figure out how to avoid doing that particular thing again.

I waited too long for him to do what he needed to do to get better. He’s not going to do that unless and until he decides, and — here’s the not repeating mistakes part — he has no place here unless and until he has well begun that arduous journey.

Whether he takes it or not is not up to me.

Not my circus any more.

Time to have that dinner and watch a silly movie.

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All. That. Love.

Straight into Coping Mode.

From letter to my doctor

Dear Dr. S,

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

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

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

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

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

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

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

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

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

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

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

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

Hope your summer’s going well.

All the best,
Isabel

Reality bites

So here’s what is really going on…

Notes from paradise

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

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

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

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

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

All that love…

Mental breakdown

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

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

All that love!

Dual diagnosis

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

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

Worst of all, love is simply irrelevant.

All. That. Love.

Irrelevant.

All that joy?

Unthinkable.

All that subtlety of observation and care?

Dead, decapitated, done.

Looking for reasons in unreason

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

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

It was an amazing partnership, in many ways.

All.

That.

Love.

Making choices

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

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

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

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

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

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

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

Over and over, my broken heart cries out,

ALL!

THAT!

LOVE!

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

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

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

I’m a history nerd. I love the stuff.

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

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

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

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

A word to those new to mortality in action…

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

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

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

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

This is what is meant by bearing witness.

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

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

That is bearing witness.

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

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

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

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

Bearing witness is not about changing the outcome.

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

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

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

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

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

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

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CRPS terminology, under the nervous grin

After talking with patients, doctors, and loved ones — and, as a trained observer, carefully noticing the changes in posture, expression, and tone as I’ve done so — I’ve arrived at the following conclusion. I realize it flies in the face of current accepted usage, but there are some things wrong with current accepted usage, and I don’t mind saying so.

/SeeYarP’Yes/ is not that hard to say.

No, it’s not proper to call it CRiPS unless you yourself have it. This is partly because “crips” is a term of abuse for disabled people and using the term for a particular set of disabled people won’t change that, and partly because Crips is the name of a violent organized crime group originating from Southern California. Neither is an appropriate form of address for those who have the most disruptive and intransigent pain disease known to science, and can’t perpetrate violence because of the devastation it wreaks in their own bodies.

Those who have this disease sure don’t need to be subliminally messaged with either association.

I understand that young docs are being trained to use the term in order to remind themselves that it is, in fact, a disabling disease. My view is that, if you’re smart enough to graduate from medical school, you’re smart enough to remember that disruption of the central nervous system can be pretty freaking disabling, in CRPS as in spinal injury or Alzheimer’s or anything else that disrupts the normal structure, chemistry, and behavior of the central nervous system.

The fact that the current name focuses on “pain” is a problem of nomenclature, which will change again as it often has since the year 1548 when it was first described by Ambroise Paré, father of forensic medicine and physician to the French court at the time. (Look him up — great guy. Prefigured that outstanding physician and gifted schmooze-meister Dr. Silas Weir by over 300 years.)

CRaPS, as in the game of chance, is not recommended. It sounds like a vulgar term for bowel excretions, which is — if possible — even more inappropriate. It’s certainly a “crappy” disease, but having said that, it’s time to move on and not keep reminding someone that they feel (and believe they look) like shit.

Of course your CRPS patients say they don’t mind. Check the power differential; their ability to bear to live is in your hands, doctor/loved one, so they’re highly motivated to be nice and go along with anything that doesn’t involve an immediate threat. They want you to feel good about them, so they will laugh along with you, however unreal it feels.

Have some decency — don’t call them or their disease CRiPS or CRaPS, even if they say it’s okay. They don’t need to feel any worse than they already do.

The CRPS patients can call it whatever they like, because only they know how bad it really is, and have the right — and need — to cuss it now and then.

/SeeYarP’Yes/ is not that hard to say. It’s only 4 syllables, like “pain diseases” or “really bad day.” It’s 20% shorter than the word “dehumanizing.”

This moment of intellectual — and emotional — honesty has been brought to you by a nightmare I woke up with this morning. My nightmares are a direct result of my disordered central nervous system, which can no longer process things normally and has to roil around and tear up the pavement in between the constant push-back and re-organization that takes place in my waking state.

It’s pretty crappy, not to mention crippling. But I rise above it, yet again, as I intend to do every day until the day I die. I sure appreciate anything others can do to avoid making that harder.

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Getting held up by New York

I’m working on a novelette about the meningitis madness of last month. Until I get it done, let me entertain you with another tale of traveling with pain.

About five years ago, I fled an intolerable situation in California and, being pretty sure I was in my last few months of life, went back to the Northeast to visit with my nearest and dearest and stay until I mended or died, whichever it turned out to be. In short, I was not at my precarious best. I’d thinned my belongings down to what would fit in a suitcase small enough for me to handle, plus a spare set of “smallclothes” and meds in my laptop bag.

I flew into JFK airport and made my way (eventually) to a New York suburb down the street — and downmarket — from Scarsdale. I thought flying across country was hard work. Leave it to New York City (and environs) to adjust that perception. Anything worth doing is worth doing BIG!

It started with getting my luggage — the carousel changed 3 times. It had my supplements and laptop power cord in it, so there was no leaving it behind, as there was no knowing where it would wind up if I abandoned it and tried to get it tomorrow — it could land in Athens stuffed with either explosives or maple candy, or in the garbage scow on the Hudson stuffed with random bits of unsuccessful mobster; the contents would be more oddly distributed still. I’ve been flying into and out of JFK since the early 1970s, and I never leave my luggage uncollected there.

Each time a new carousel number was posted next to our flight number, herds of wilde travelbeests lumbered across the linoleum plains, flowing around eyots of irrelevant carousels and travelers from other flights, who huddled against treelike pillars and carousel islands in order not to be trampled underhoof.

I limped gamely after, unwilling to leave my luggage to the mercies of the feral crowd. We ultimately wound up back at the first one, which somehow didn’t surprise me.

I managed to get my bag unhooked from the carousel lip, but no further. It was just about to throw us both into the guy next to me, when he kindly popped it out and dropped it neatly next to me, with a brisk nod. Then went back to field the hefty steamer trunk of the twitchy Givenchy skeleton behind him.

I debated taking the bus to Penn Station ($3.50) vs train-shuttle (unstated) to the shuttle-bus($1.50); figured train-shuttle would be free, as my training in UI & signage, and casual acquaintance with the law regarding same, made it absolutely clear that prices must be stated up front. No price stated, ride is free. Sweet!

Of course, every other international airport I’d been to in the past 20 years provided free transport within the airport complex. This was New York, where you’re charged even for the gum on your shoe, so I was a little wary, but I was also exhausted and poor.

Got off at the end of the train-shuttle, pulled my wheeled suitcase to the exit door, and there found a sign stating it cost $5 to exit the train-shuttle station.

Stared at sign for 2 solid minutes, flies drifting in and out of my open mouth. SO. BLEEPING. WRONG.

Briefly considered going back, but too tired. I gave up my prospect of a little “real” food in the city to get out of the shuttle track area (why did I think $5 would buy anything in NYC?), and got to the shuttle bus.

The leaderboard read, “Penn Station.”

I asked the driver when the bus came that would take me to Grand Central. He said, “This bus goes to Penn Station.”

I asked again when the bus came for Grand Central Station, and the bus driver again said, “This bus goes to Penn Station.”

I said, “I understand that. I’m wondering when the bus is that goes to Grand Central.”

“This bus goes to Penn Station, lady.”

It finally dawned on me, as he was about to close the door in my face, to ask if there WAS a bus to Grand Central from the airport.

“Nope. This is the only shuttle into the city.”

“You’re kidding.”

“Nope. You have to get from Penn to Grand Central yourself.[I interjected, in shocked squawk, “STILL?” He nodded.] You can take a bus or the subway, but with your luggage, you’ll want to take a cab.”

I hitched up my jaw and hauled self and luggage in. He almost waited until I was seated to take off.

A teenager tripped over my suitcase on the wide, spacious, brightly-lit shuttle-bus. My suitcase came up to mid-thigh and was HOT PINK. Somehow, he walked right into it and went down with it — wrenching my wrist and elbow of course. After looking around blearily, initially wanting to blame someone other than his own clumsy butt, he very sweetly picked up all 38 pounds that encompassed every object I owned other than the clothes I had on, which was more than I could do, and put the handle back in my hand. I re-wrapped it with the scarf I used to cut the vibration and, with an added loop around my forearm, provide some stability against my weak grip. But, in case of other spaced-out passengers, the loop didn’t go back on until I was off the bus… at Penn Station.

Because it’s NYC, where a good conflict should never be resolved but should be handed down for posterity, they have NEVER IN THE PAST CENTURY figured out how to link up the northbound train station with the southbound train station, despite the fact that the trains are the lifeblood of the city and, on top of that, millions of customers travel from south of NYC (Baltimore, Washington DC, and points south) to north of NYC (from White Plains to Buffalo, all of New England, and Canada) every. freaking. year.

The JFK shuttle comes into the southbound train station, Penn. I needed to leave from the northbound train station, Grand Central. It was up to me, as it has been up to every single individual traveler in the past 100 years, to figure out how to get from provincial-sounding Penn to the arrogantly misnamed Grand Central. Let’s review my choices:

  •  A cab was out of reach, especially as I’d just blown $5 on a ride that should have been free.
  • The subway meant more confusion, bumping, and stairs (the elevators and escalators are always out of order or being fought or pee’d on, sometimes both at once) than I could even think about without screaming.
  • The bus required finding secret, unmarked bus stops where they WILL ignore you if you’re off by a few feet and, I’m not kidding, either one or two transfers for one of the most essential routes in the city. There was no direct bus between the two major terminals of this train-dependent conurbation.

I can’t make this stuff up!

I decided to haul myself and my hot-pink suitcase the X blocks of crappy city sidewalks to Grand Central. “It’s not that far” — famous last words. “I’ve done it before” — 20-odd years ago, pre-injury.

I checked the map, got a sighting on the sun, went one block to read the street sign and check my direction, turned left, and marched off — for about 5 steps.

There were many adjustments to work out: soft tethering scarf, arm used (eventually, both), length of stride, and what to focus on — the directions, the pedestrians who mostly swerved nicely, the truly awful surfaces I had to traverse. The surfaces won in the end, out of sheer necessity. The occasional bozos, who thought I could steer better than their unladen selves, bounced off of either me or my sharp-edged case, spitting vile things without drawing breath. I kept on, pushing through the yawing wobbles the collisions caused as I pitched and heaved steadily onward.

Dear heavens, it was arduous.

Halfway there, dripping soot-laden sweat and hauling my grimy, now ashy-rose suitcase which had accumulated about 15 pounds of pollution by then, I found myself heading towards a cluster of burly cops standing between a parked cruiser half in the road with its butt half blocking the driveway, and the loading dock behind.

They gave me that dry, supercilious stare that city cops learn in the Academy. It says, “For our comfort and convenience, we’re deciding whether or not to kill you right now. Don’t try to make our day.”

I thought about that for a moment, trudging along with my case baulking at the bad paving, yanking my swollen wrists around like a fighting tarpon. I glanced at the path around the cruiser, involving 2 curbs, bad patching, and a pothole; quite apart from the random, fast, and dangerous traffic in the street. Definitely worse than the sidewalk.

I realized what I looked like: a grubby, chubby, oversocialized, White middle-aged female, evidently too poor for a cab. Very low on the food chain.

I realized I didn’t care.

I flashed back to the Jaguar my friends used to call me.

It was a youthfully arrogant and vigorous period of my life, when an off-duty cop in a bar in Manhattan wanted me to tie him up and beat him black and blue, because he’d really enjoy that. (I refused ever so courteously — which went curiously with the well-worn motorcycle jacket and wash-and-wear lack-of-hairstyle — and walked away, eyebrows twisting at the sheer novelty of the experience.)

I refused to walk around into the street. It was insane and vile to expect it, when I could clearly hardly put one foot in front of the other and was towing my life with battered arms.

No. Not playing that game.

One tactic of successful women:
If the game is rigged against you, change the rules.

This clot of cops got the twin-engined, diamond-drill stare from under my beetling brows, the burning power of pure womanly disgust and exasperation doing the work of 5 bodyguards and a million dollars.

Great shot by Bernard Dupont of France, via Wikimedia.

New York’s Finest peeled back from my path like an amateur drill team, stumbling slightly and eyes wide.

Yeah. That was more like it.

Same photographer, same cat, relaxing after she made her point.

I heard their startled and admiring voices behind me. I almost smiled. I wondered what they’d say if I turned around and demanded a lift. It was almost worth the effort, but turning back was unbearable, even for that entertainment — so I kept on.

NYC cops weren’t so racist then; it might have worked even if I weren’t White. The good old days.

Stumbled into Grand Central, at last.

Just what it’s like. Image by diego_cue

After dropping my sweat-sodden self onto a bench until my breathing evened out, I got up on pure willpower (my legs certainly didn’t have much to do with it) and wobbled up to the ticket window (One of those funny alcoves on the right.)

Despite the unmitigated chaos and relentless interference of my cross-City odyssey until now, I had the pleasure of getting good instructions, delivered clearly; the right ticket to my destination; explicit directions to exactly the right track and the right train; and which cars to avoid — “The drunks use that one, and it’s never clean.”

I fell into the seat nearest the door, then slid to another when someone dumped a heavy bag which fell over onto me, edge first of course. I let the bag lie and he eventually picked it up.

A lovely young woman, the quintessence of perfectly-formed and perfectly-presented modern American beauty, got on in one of the suburbs, sat down across from me, and gave my weary, grubby, chubby, middle-aged self the sweetest and most open smile. I did my best to repay such sweetness from out of the blue with the best smile I could dredge up in return, and a nice word.

I got off at the Scarsdale stop and there was a slight pause in my progress as I resisted the boisterous flow of commuters scenting their stables. Clutching the rail that had kept me from being swept under, I saw a car door open. In a few steps, I fell off of the train station and into the arms of my old friend.

I asked her later why such a beautiful, clean, discreetly made-up, perfectly turned out young woman would greet such a gargoyle’s appearance with such sweetness. My friend replied, “I’m not sure how to tell you this, but it’s envy. You can afford to let yourself go [finger-quotes.] She can’t. She wishes she could be like you.”

It finally penetrated what a trap the relentless and expensive looks-slavery of upscale New York is for women. My lifelong sarcastic envy of “Barbie dolls”, not to mention “Givenchy skeletons”, died on the spot and I was glad I’d added the nice word. Anyone who could envy me at that point was in really bad shape.

The cross-country flight was originally going to be the funny story I told to amuse my hostess — delay, changed gate, dashing around in a wheelchair, turbulence, sick babies, nervous lady with long arms and huge rings taking up the aisle and risking the eyesight of those nearby — but it really paled next to the story of the last few miles. She laughed and applauded and then, once I was fed and pilled and washed, tucked me into a soft bed with endless pillows. I slept better than I had in months, safe and still and comfortable at last.

I haven’t tried to cross New York City since, except when I can afford a cab all the way from the airport to Grand Central. Life is too short for that much work and physical battery… and the NYC cops have changed.

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Fevers, friends, forgetting, and a kind of freedom

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

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

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

So far, though, no vomiting!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The curling breezes change direction again.

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

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

Famous photograph called
It felt like this looks.

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

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

water_swimminghole-1

I breathe, and the world settles down.

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

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

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

Drifting first one way, then another.

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

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

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

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

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

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

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

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

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

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

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Fifty One

Guess what? Everything’s up in the air, except me. But don’t worry, it’ll work out.

And that, folks, is how you know I’m back in the saddle. I’m not naturally a nervous person, but the years of system and systematic abuse on top of the fried central nervous system left me very nervous indeed. Every uncertainty was like a set of razor-wire boleadoras, ready to spin out and knock me over and tear me up.

line print of gaucho from the 1800s riding a horse after ostriches, swinging 3 stones tied together, a set of boleadores, to tangle the ostrich in.

Ghastly image, but very apt, as some of you know from your own experiences!

Of course, this slice of recovery is just well begun, not done. I’m simply able to reflect on possible futures without melting down reflexively. I’ll still have bad moments, bad days… and they will pass.

After all, there’s always an afterwards.

So, I’m 51 today, and I can honestly say I didn’t expect to see this day. You’d think my 50th would have been more reflective, but no, this one is.

I realized I’ve been blogging for 8 years, maybe 9. The first year and a half were justly lost in a Google flail, in the early part of the Pit Years. They were online journals, not blogs; the point of blogging is not to rip my skin off for reader amusement or “inspiration porn”, but to trace one path through the thickets we all have to travel, and trade ideas that help others find their own paths, or at least make them more bearable. (Tip of the hat to the friend of my youth who had the integrity to tell me she didn’t want to read my diary.) I’m more grateful for my readers, in all your kindness and struggles and brilliance and care, than words can ever say.

51 is starting with a bang, or rather continuing the same bangishness that has characterized this year so far.

I’ve found out I don’t currently have gall bladder disease, detectable spleen or pancreatic disease, or any form of cancer growing in my gut, just some “mild” gastritis. This leaves the question of what’s causing the rather extensive GI issues open for further inquiry. I’m going to see if I have mycotoxicity, which is looking very probable indeed, going on reactions and the fact that even the weirdest symptoms on that list are mine; going to find out if my body is able to respond well to a massage intensive (twice weekly for some months) or not; going to finish the final house repairs (as soon as the weather warms up long enough to let us not only recover from the cold but then get past the setting-up); and going to find out where we’ll go next, when the lovely house we’re living in sells. (My credit will age out of the worst black mark next year, so getting a house loan is simply a matter of time, with ongoing diligence. Not to mention knowing where to land.)

I’ve been reflecting on J’s unique mix of gentleness, brusqueness, flexibility, and intransigence, and realized how much he helps me in nearly every phase of his personality. (To misquote a capable yenta I knew, the holes in his head fit the bumps in mine, and vice versa.) I wondered how much further I could have come if he’d been there when I first got sick, or before I got sick. What great work I could have done.

Then I remembered, oh yeah, my ego was very much in the way — as that egotistical sentence pretty well indicates (what about your partner’s work, eh, Isy?) We would have loathed each other on sight, as both of us were cocky little jerks back then. It took losing everything that I thought defined “me” and “my life” to realize what really matters in a person — and in life.

I learned that love isn’t my driving force, it’s the anodyne that makes living bearable; curiosity is the characteristic that drove me out of the grave. I never would have guessed at the pure slingshot force of it.

So, though I don’t think I’ll see another 51 years, I can see that I might be wrong about that too. I’ll start heading that way now. I’ve got good company, outstanding friends (some of whom I’m related to), and interesting things to do. Onward.

May the future be worth the trouble of getting to it!

Panoramic view of Road Town harbor in the tropics
H’mm… that looks good!
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Nut milks can be magical

I’m doing a sort of elimination testing to refine what nuts and seeds, under what conditions, cause the troubles I howled about last week. It’s possible there might be a way I could keep some in my diet; we shall see. More on my guts later.

I want to share how I make nut milk, quick before I forget.

pitcher-glass_w-milkIt can be delicious, nutritious, and beautiful.

pitcher-glass_w-milk-purple

I’ve found it to meet all 3 criteria only when homemade. Fortunately, it’s very easy to do, and very easy to space the 1- to 5-minute tasks so I can do it in little bursts.

I was taught how to make this by the chief cook and supervisory bottle-washer aboard S/V The Excellent Adventure. I owe her and her family a deep bow, because not only did I learn to make nut milk, but I got to experiment (look under “Variations”) with a boatful of beta-tasters.

I wrote up the basic recipe and my favorite variations this afternoon, for some relatives of Cougar’s. I turned it into a PDF so I could share it online without facing the horrors of Word conversion and wandering images.

As many of you know, nuts are fantastic nerve/pain food. The healthy oils calm the pain and inflammation, the abundance of minerals smooth out neurotransmission and cellular house-keeping (which is a very important thing), and the protein and fiber are digestible and body-friendly. (Unless you’re allergic.)

I’m beginning to think it’s the rancidity and mold I’m reacting to. More on that later.

Anyway, back to nut milk. It’s very easy to make, tastes fresh and clean and delightful, easy to make creamy if you like that thicker texture, and — in case I haven’t said so already — it’s ridiculously easy to make.

PDF linked here: Isys-Nutty-Milk-Adventures_including-recipes

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Aw, nuts!

While I was mulling the constancy of nausea and yuckiness, looking for a reason more useful than “it’s winter”, I realized I had relentless cascades of post-nasal drip.

The stomach isn’t too fond of relentless cascades of post-nasal drip, because the glucoprotein complex generically called “mucus”, which we usually call “snot”, is not that easy to digest. It’s not really meant to be digested; it’s meant to do its job (picking up and trapping obnoxious particles or germs or what-have-you) and then get blown out. It’s not supposed to roll into the tummy in a never-ending stream.

me-tongue-out

I was reading up on GI issues (as one does) and stumbled across a piece which said something like, “Stay away from nuts and seeds entirely. The oil is rancid by the time it gets to you and that rancidity is poison to the systems of people who have leaky guts and sensitized systems. You can usually tell because the immune reaction affects your sinuses and causes lots of extra mucus.” If you’re curious, this article was about the GAPS diet and explained the whats and whys.

I threw my hands up in exasperation and disgust. I relied on nut and seed butters to start my day, because they cut the morning pain down to a quite bearable level and gave me a bit of protein that didn’t bring my stomach up in revolt. My mornings are tough enough and this info just pissed me off.

The next morning, I woke up noticing that I didn’t have post-nasal drip. Nice. Then I started on my morning breakfast of apple (malic acid helps the pain ease off too) and sunflower or almond butter (I forget which.)

Two bites…. then a relentless cascade of post-nasal drip.

My first thoughts were mostly expletives. Totally unprintable in a family-friendly blog.

I went off the rails a bit. I’ve been dealing with this disease complex for nigh on 15 years now and I have evolved a pretty limited (and not cheap) diet to manage it. Rather than thinking, “Oh great, a good clue as to what I can do to improve things!” I mentally roared, “WHAT THE BLEEDING HECK CAN I EAT ANYWAY????”

Tiger yawning hugely. Looks like roaring.

Let’s review.

– Genetically-determined mild allergy to white beans. That means soy, chick peas (which wipes out hummus and much Indian food), most multi-bean soups and salads.

– Roaring neurologic gluten response, which in my case spills over into related molecules. This means: no wheat, barley, triticale, rye, oats — in fact, most grains; nor fresh milk, soft cheese, dairy ice cream; and eggs only in strict moderation.

– Hashimoto’s disease means my body is chewing up my thyroid. This means definitely no soy, but also, no broccoli, chard, kale, bok choy, cauliflower — no cabbage/brassicas of any kind — and that’s an awful lot of vegetables not to have as an option, including most winter veg. And yet, I need lots of vegetables and happen to like all of those. Even in small amounts, brassicas can squash thyroid response. It’s very sad.

– Candida/c.diff overgrowth, which means no sugars (not even unrefined honey or maple syrup, not even low-glycemic stuff like agave [which makes me cramp] or maltose), no rice, minimal fruit, no juice, no root starch (too high in sugars) or white starch of any kind (if I’m doing this diligently) which wipes out the potato family and remaining grains except amaranth (I can’t digest quinoa at all, so it’s not even an option.) Then there are the limitations that are less obvious, which means, no tea or coffee, no vinegar or cultured food (if I followed that parameter, I’d be unable to digest anything and my guts would be even worse), no artificial anything because they tend to be grown on yeast or malt slurries (which is fine because packaged foods tend to happen to other people, not me.)

– The constant immune-y fuss means I should probably be more diligent about the inflammatory culprits: tomatos, eggplant, potatos, peppers, the whole belladonna group. I LOVE those things. Also, no canned foods, because the trace amounts of preservative stuff are so neurotoxic that molecules matter to my body, and homemade canned stuff can still grow trace amounts of the fungusy-yeasty stuff that boots me back into candida territory.

– Now, no nuts or seeds. At all. Possibly no cooking oil. I was diligent about getting the freshest and checking best-by dates and inspecting the packaging, for the candida reason. Not enough any more. No nuts or seeds at all.

OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW OW

I think i’m down to squashes, lettuce, and incredibly expensive pastured/wild flesh foods. Oh, and grassfed (Kerrygold) butter. I can put that on the squash, I guess.

To be frank, I haven’t been very diligent about eliminating the root veg and I’ve had some broccoli and cauli lately, because it’s freaking winter and I’ve needed to eat something that’s available.

Since reading about the nuts/seeds thing, I totally fell off the rails. No gluten, because I’d rather die than go through all that again, but I’ve gone to town on sweets, rice, vinegar, ice cream, root veg, brassicas, belladonnas — everything but nuts and seeds.

Wide-eyed kitten staring at a roast chicken on table in front of its face

Paying the price for it, too… as one does.

Two nights ago, I made myself a new bedtime meditation recording, designed to rebuild my own mental core. I’ve just about had it with trying to cope with the world (if you have one eye on US politics, you’ll understand that well enough, especially if you have friends and family who are losing care due to political brangling, losing property due to corporate gamesmanship, or losing their liberty due to being not-White); add to that some family crises of illness and a bereavement in the extended family, and… yeah.) I’ve reached March feeling absolutely shredded inside.

And then…. NUTS!

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

Lately and increasingly, my brain was really resisting the relaxation response training — which is very odd for me — and I was having nightmares and waking up 5 times a night. I thought that, if I backed off the calming exercises and instead re-integrated my core self, that would make more sense than trying to pretend everything’s all right for half an hour. I have no idea what that looks like for other people, but I have a pretty good idea what it looks like for me. So, I made a recording with a series of mental/imaginative exercises that boil down to my individualized psychological structural support.

The chaos and rage are abating, which is just as well, because I have a follow-up appointment with my pain specialist tomorrow. I’m calming myself down with this article before turning my fragile attention to encapsulating the physical fallout and revelations of this winter in a coherent patient update.

I get to tell him that I’m seeing the GI specialist later this week, and that I have tested marginally positive in a screening test for mold toxicity, so more blood tests are coming from my allergist. That would actually explain a lot, but I’m not sure where he stands on the subject. Mold toxicity, as a driver of illness, is one of those things where the physician’s belief-state has more bearing on care than the coherent, consistent, verifiable facts of the patient’s disease-state — in that respect, it’s like chronic fatigue, neurogenic pain, and most immune disorders. Familiar territory to many of us.

A few days ago, I apologized to J for being such a piece of work lately. I told him I’ve been ill and in more pain than usual. He said, with the kindest intentions, “Well, it’s hard to act right when you’re sick. You have to feel good.”

I said, “I never get to feel good. It’s just different levels of –” (waved my arm expressively.) “I usually do a pretty good job of managing myself anyway.” He agreed, bless him.

That first phrase, “I never get to feel good,” has been preying on my mind. But then, it’s winter. This will pass, and I’ll find it easier to put my focus where it belongs — on what I CAN do, CAN eat, CAN feel, that’s not so — (wave my arm expressively.)

Until then, I’ll keep breathing, keep making my appointments, keep tending my relationships as well as possible, keep up on my documentation, keep on keeping on. As one does.

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