Author: Isy

I think I'm getting better.

Recuperating

Isy / / CRPS knock-on effects, loved ones, neurotransmitters, self-care, what works

This picture shows the only thing I can do with any real success right now.

Each time a piece goes in, I soak up the little shot of dopamine that success experiences release.

It might help that, in this friend’s household, it’s mandatory to ring the bell when a particularly difficult section comes together, so everyone can look up and give a supportive nod.

The pattern-matching uses a soothingly primitive part of my visual brain, one that’s pretty much unaffected by CRPS.

The gentle motion of hand and eye back and forth, back and forth, soothes the central nervous system.

What’s ironic is that I realize I’m in recovery from a long damn case of too much too often too fast, but right at this moment, I feel stupider and weaker than I have in months.

I think I’m overdue.

A great flight

Isy / / CRPS Art and Spirit, moving/traveling, perspective, quest for a cure
The first leg of this flight was the best I’ve had in years. I chit-chatted at the gate with another invisibly disabled person for half an hour and the three of us (including his wife) kept each other very amused, then wound up with not just one, but two, delightful neighbors.

No sooner had I noticed, and enjoyed, the fact that I could converse for an hour and a half without saying “CRPS”, than one of my lovely neighbors turned to me and said, “And what do you do?”

“I’m a writer.” A surefire conversation-starter, that.

Inevitably, “What do you write?”

I talked, not so much about the disease, but about my core group of CRPS friends, most of us in different countries. I described our ongoing efforts to publicize the disease by surfacing the art and creative work of people with CRPS, of pooling our own information about what works both within and outside the standard medical model, and our hope, one day, to be funding research to quantify what works in fields that have been completely overlooked (I’m being tactful) for so long.

I got what could be THE critical referral to a lawyer who has relevant experience in nonprofit structure. That alone might have been worth the price of the ticket.

Then the entire plane sang “Happy Birthday” to my other lovely neighbor.

It really was a great flight.

Departure day

Isy / / critical thinking, loved ones, moving/traveling, self-care
With  uncharacteristically sublime timing and verbiage, I got us into a breakup conversation that was the kindest, most civil and caring one I’ve ever had. Hard to argue with the heart problems and needing to be where the doctors are a lot less likely to kill me by accident…

Two days later, it seems more like a stretch out than a break up, but I’m not sweating that. I can’t take any more chaos, stress or drama, so I’m going to let things stand. The love is there, so why kick it to the curb? The world needs more love — at least, mine does.

Given the year we meant to take to see if this would (or should) work out, it’s reasonable to take that time to figure out what shape this connection — with its own strange, resilient, unique strength — should really look like.

I’m getting a healing break with an old friend whose life includes just the right mix of rest and activity, good food and indulgence, solitude and society.

Meanwhile, J is going to wash my car inside and out, and pull everything out of it and put it into storage so I can sort it back in more rationally — as I’ve intended to for months. I didn’t even think of that, let alone hint, I swear! He just thought it up himself, to make my life nicer and more manageable.

I’ll bounce back to J’s in early February to get my stuff and get the last business sorted, then go to LA to see my doctor and find a place to stay that meets my needs for awhile — where he could come visit and try for some reality checks.

Anybody got a place in the warmer parts of the San Gabriel range for under $500/month? Where my lovely wolfish un-boyfriend can bring his considerably better-behaved dog? 🙂

Bringing chocolate

Isy / / bugging out, home-hunt, loved ones, perspective
I have to be back up North by noon on Thursday, to collect my mail, get the paperwork, meet one of J’s many brothers, and catch up.

A friend is going to come up and visit me when I’m up North.  I actually have a friend in SF who likes me enough to make the drive. Pretty cool 🙂

J has been making friends with the neighbors, and there is nothing like friendly neighbors.

I didn’t find a place to land in LA for my upcoming doctor stuff, but I did cultivate one real, very charming possibility for the future. Not open now, but maybe in a month or two. Which would be better for me anyway.

I’ve been meditating and doing a lot of spiritual work, and am bent on making as little room as possible for mean-spiritedness and ill-will in my life. This is a wonderful exercise because let’s face it, it’s a challenge to have no ill-will in these (apparently) increasingly mean-spirited times.

But I have a very welcome houseguest to see, a bf who’s a bit challenging but extraordinarily loving, and the sweetest dog alive to get back to.

My bf’s brother is going to be hanging around for a few more days. I find that comforting. I’m bringing chocolate.

Any such thing as "just another day"?

Isy / / adaptation, imp-possible, loved ones, mortality, moving/traveling, perspective, radical presence/radical acceptance
At the end of last year, I had the pleasure of writing exactly the kind of end-of-year post I’d always wanted to: Pleasant without being dull, reflective without being melancholy, whimsical without being trivial, and, of course, linking back to blog posts marking turning points in the year.

I took that week to reflect, which was appropriate. It had been, for me, a year of great inward shifts, starting from the inevitable, flattening despair of the massive practical and intangible losses this disease brings, to a new awareness of possibilities that I had discovered, fought for, or created out of whole cloth. It was probably the year that this blogging voice really took shape.

This year is quite a bit different. I’ve been technically homeless for most of it, catching up with friends I hadn’t seen in far too long, and looking for a rational way and reasonable place to set up my post-poverty life. (Oh well.)

 Despite my plans, I haven’t had much time for reflection these past few weeks. Physical survival in the form of an income and affordable home were taken care of… but then the survival issue became much more personal, and at the same time, even further beyond my control as my nervous system took off without me.

Despite all that work, all that expense, all that hope of 2012… Nothing is assured. There is more to manage, but less I feel I can hang onto.

Admittedly, this isn’t my cheeriest post ever. Be assured that my determination remains unmoved.

With it, that F-U imp still holds the back of two fingers up to anything – or anyone – that thinks to squash me.

This date is an accident of history. The end of the year has even less reason to land on this day, of all days, than the last cycle of the Mayan calendar had to land a few days ago.

Our calendar is only loosely tied to anything but mental habit — and centuries of political pressure.

But it does us humans good to have a chance to pause and reflect, think about how we define ourselves, how we adapt, how we react, how we think, notice what we’re grateful for, what we cherish and want to keep.

As for me, that’s now too obvious to bear speaking of.

I will not die.  
I have work to do. 
I love, and am loved, more than my pitiful mind can encompass.

It’s more than enough to keep me going!

Whatever we call this day, it’s one more in the middle of an adventure beyond imagining...

 Adventures tend to be damned uncomfortable things, as Bilbo Baggins was not the first to assert; but they make good material. As a writer, I get something out of that. If it’s a form of insanity, at least it’s an adaptive one.

Come with me on the journey. I always appreciate the company.

Links to blog entries:

Something like rest

Isy / / bugging out, loved ones, mortality, useful links, what works
I thought I would get laundry done today, but I’m still too shaky. I got a good walk in, and finally set up voicemail on my “dummy” phone.

I’m trying to think outside the box with the shattered remnants of my brain. My next doctor appointment is in February, and I expect to be in an intensive 2-month program for March and April. I do need a reasonable place to land, although there’s no knowing if I’ll get a permanent home here.

A package arrived for me up north, forwarded from my mailing address in Massachusetts: a present, several cards, and one or two letters. J, with controlled pain, asked where he should send it all. At this affirmation of distance, I broke down in tears. Once I could speak, I asked him to hold it until I got back. He said, “I like that.”

This forced separation is for the birds, but I’m certain he is fine without me, and that I can’t go back yet.

We went to a great deal of trouble to find a nice place to be, and it was far better than we dared to hope for. My feelings at being driven from it are beyond words.

All right, so it’s a little idealized here…

His brother made it into town last night… but then J’s car broke down at the airport, and he was improperly ticketed… Fortunately, he has AAA Plus and got towed most of the way home for free, and could afford the rest of the trip to the shop. The kindly, dog-loving, competent woman tow truck driver got the car safely stashed and took them all safely home afterwards. How cool is that?

Tow truck drivers can be really cool.

He’s enjoying the visit, though it’s bittersweet. He says it might be for the last time; this brother does not take care of himself, and his next trip will be to go stay with his daughter in another state, where he can get checked out by a whole stable of medicos.

Mortality sucks.

I’ve noticed, though, that J’s voice is stronger and brighter and deeper (a delicious combination!) so I think it’s doing him a ton of good to have someone around who reminds him of being the capable older brother. He was in the upper third of a brood of 9, and it seems he had a real gift for getting things done and making everyone like it… As long as there was an element of mischief involved.

Surprised? 🙂 I’m certainly not. He has the gift of getting others to play. He thinks he’s a lone wolf, but wolves choose their leaders according to who can get everyone to play well together…

There are so many layers of person there, that, even at this distance, and under this strain, he continues to unfold in my eyes. I don’t know what the future holds, but I believe he’s in it somehow.

A bit of flow

Isy / / bugging out, home-hunt, loved ones, self-care
All in all, a successful day, by rational markers…

  • Two huge problems taken care of at long distance (the combination of phone and internet is a wonderful thing). 
  •  J has a brother with him now, a good-hearted dude who totally has his back. Just the kind of person I want him to be seen with around town! 
  • I saw properties in, and did a reasonable checkout of, the nearest town covered by Craig’s List and within any version of my budget. 

It didn’t result in housing, but it did result in info and a certain amount of clarity…

Benefits: more than one color among its inhabitants, both middle-class and poor people, all the usual stores, houses reasonably recent and reasonably well-constructed (by California standards.)

Drawbacks: the classes are strictly segregated, and the gates and walls shut the poorer people IN. That’s just a bad sign… All the stores are big box; I think I saw one non-chain store in my whole tour. A town with shallow roots.

Fun bit: A scam claiming that a house worth $1400/mo is posted on craigslist as being rented at $550/mo; my email query got a fulsome reply from a “pediatrician” (who can’t even spell the word) who just moved to Florida, and might possibly go to Texas next, don’t worry, just fill out all this personal, identifying info and send the money and he’ll FedEx the key…

And if you believe that….

I  checked out the house, called the number on the sign, had a lovely chat with the receptionist for the real-life management company, and forwarded the email after informing her that a thoroughgoing scam like that really is a police matter. (It was at least the third call.)

Unfortunately, the bogus price was the only one I could really afford…

Given the way my credit got trashed by my descent into destitution a few years ago, and the problem with sublets (and therefore getting a roommate), I think this will take a lot of footwork.

I’ve always, always paid my rent. My bills go,

  1. Rent
  2. Warmth
  3. Phone
  4. Food
  5. Everything else

But try proving that, in an economy that means houses and harbors get bought and sold every time you turn around, and housing managers and harbormasters get moved and downsized even more often than retail clerks.

Which brings us to the next thing. I spoke of being out of the flow, nothing feeling right. Well, that seems to be shifting — all things being subject to change without notice, and not assuming I’m right or anything. But there is a blossoming of hope and possibility, and whatever brings it, I am truly grateful.

I have the thundering inward message to spend at least the next 18 hours on self-care. No running around until I have done so. No house-hunting until further notice.

This is painfully hard because I’m spending a lot per night (for me) and I want every day to be worth what I spend on it. That’s a bogus, above-the-neck, able-ist thing to say, though. I have to damn well take care of myself. Otherwise there is no worth, no day, no useful activity.

I got enough food for a couple days, detergent for dishes and laundry, and need nothing more that I can’t get within a short walk in this reasonable neighborhood from my safe, upper-story room.

Time to take care. There are far worse things!

with a tip of the hat to Zorba the Greek 😉

A day, still in life

Isy / / bugging out, home-hunt, loved ones
Today was good: sent a care package to J, did some research, and plotted out a town to look at homes in. Tomorrow is a big day: lots of househunting.

Still struggling with the feeling of being off the rails completely but there is so much to do that it almost seems irrelevant. Two completely different dramas are unfolding which aren’t mine to discuss, but this blog post is going to be a lot shorter than I’d intended so I can get back on the phone.

Meanwhile, I’m hoping for a lack of interference in the hunt for a safe home. That’s all I ask….

An upside down day

Isy / / bugging out, critical thinking, CRPS knock-on effects, loved ones, mortality, perspective
Today was a day when everything seemed to turn at least one somersault, including my mind. In fact, I just took off the headset and turned one myself, to complete the set.

Extreme stress makes me a little whimsical…

Food & housing

I woke up this morning in a motel that was as creepy as it was the night before, when the desk clerk had looked up and down at sweet, white, worried me, and said in her most reassuring tones, “I’ll give you the room on the second floor, on the corner, right where I can see you.”

On the one hand, I was glad there was someone to look out for me. On the other, it was horrifying that it was so baldly necessary. A bit like my relationship lately.

Today was the last day of intestinal meltdown before heading into real wasting syndrome: relentless nausea, episodes of dizziness, and nearly volcanic indigestion. The next step is relentless diarrhea. I’ve had wasting syndrome once this year already, and that was enough.

The automatic drive is about to go in reverse…

Time to put more money into staving off physical self-destruction: I called a good hotel with monthly rates, and made a 30 day reservation.

The indigestion is considerably better, and at least I can eat past the nausea. Success! I WILL save this system!

I finally had a good, real conversation with boyfriend J this evening. For all our mutual problems, there’s a lot of love there. This separation is agony for both of us.

I finally got to say what I have been tripping over all day: nothing feels right. I usually have a strong sense of flow, of what should happen next and how to get there. But it’s as if I got washed up on the riverbank weeks ago, and however hard I try, I can’t catch up with the current. I’m more lost than I have ever been.

Being away from my sweetie, and pouring so much money I really need elsewhere into the painful boondoggle of a separate life, is lonely and brutal.
So I have some thinking to do…