Re-learning how to drive

I’m either half a day ahead of schedule or half a day behind, and I’m honestly not sure which. It’s roughly another 5 days to Denver, and with my sweetie’s troubles slowly and expensively resolving, it’s probably best not to try to rush, but to let things unfold.

Mind you, an hour’s reiki this morning might be helping me think that way.

Badly as I want to be there already, snuggled up to him and brainstorming, here I am …

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Between Richmond and Centerville, Indiana.

My room has a fog of mildew which stopped me on entering, but I paid before asking to see the room, so I’m stuck. I can’t remember where the AC power cord is for the car’s air filter, though I may have tossed it in a burst of mindless efficiency before leaving.

The window is wide open while I do laundry on the other side of town, so we’ll see if that makes enough difference. If I wake up brain-dead, I’m sure you’ll hear about it.

Despite good energy and good progress, I decided to reef it in and stop early tonight — largely because I’m out of long-sleeved shirts, and needed to save arm-time for dealing with that.

I stopped here, precisely, because I had mail forwarded here to me at General Delivery — a system that actually seems to work. It included my permanent Massachusetts driver’s  license (which might be handy after the temporary one expires) and a really lovely card from one of the really lovely people I’ve met on this trip. A wonderful cherry on top of a rather good day.

It occurred to me that I haven’t discussed  my accommodative strategies much. Here are a few things I’ve done, redone, and learned on the way:

Grabbing the wheel

Those of you who know CRPS well know that vibration is absolute hell, and a steering wheel is a big vibrating thing that’s made to press against the weakest, most pain-frazzled tendons in my entire body. So that had to be dealt with.

I’ve learned, from all my adventures with tools when I lived on the boat, that no amount of padding will make up for harsh hardware.  So buying a vehicle with the lowest possible level of wheel-vibration in the first place was a major consideration.

My car, Henrietta, is a Toyota truck:


… but it’s built on a Camry base:

This means it has a much more forgiving frame than trucks and truck-mounted SUVs (though it can still tow 5,000 pounds!) and it handles the road very gracefully.

I’ve learned through many years of athletics that gel provides the cushioning my body likes best. So that was the next thing to go on:

That’s extra-thick gel-padded bicycle wrap on the steering wheel.

(And, incidentally, that’s the driving grip I use half the time. Holding the cover, rather than the wheel, nearly eliminates vibration altogether, and it’s very easy to grab the wheel if I need to dodge.)

Years of nursing and my own experiences with increasingly, um… responsive skin have made me a HUGE fan of good wool. It breathes even when wet, pads even when squashed, and if you keep your eyes open, you can find wholesale prices on new sheepskin (– and get sturdy sweaters of cashmere, merino, or alpaca for $5-10 at the right Goodwill stores, but that’s another post.)

In Massachussetts, I live near the Sheepskin Outpost on the Mohawk Trail, and I lucked into a sale there. That got me:

– The steering wheel cover, to provide more padding and keep my hands off hot rubber;

– The seatbelt cover, to keep the edge of the belt off me and keep the skin on my shoulder and chest aired;

– The seat covers, which I wound up getting for half of wholesale, because they’d just bought the stock of a company that went out of business and had more inventory than they could afford to store.


Boy, did that ever work out for me!

Covering my can

This is about traveling with disability, so here’s some physical reality.

I started megadeath antibiotics a few days ago, and the first symptoms are making themselves felt. Kefir just isn’t enough to save my skin.

My very favorite brand. I’m getting nothing for saying so, but I’d like that to change 🙂

Also, I’ve really been having trouble getting the circulation in my left leg to behave.

Today, in the middle of my day, I had a brainstorm that would minimize the reduction of circulation to my legs and maximize airflow to my antibiotic-ravaged sit-down.

I swapped my underpants for my white silk long-john bottoms instead, and decided I could just wash out the silk each evening and hang-dry it overnight. Besides, the extra layer kept the chill from cutting into my leg every time I opened the door.

Tonight at 6:22 pm, my left leg is feeling better than it did at 2:22 pm, when I made the switch — despite a couple of hours in the car and far too little activity. Who knew such a little bit of material could make such a difference?

And I’m happy and relieved to say that the parts my undies have to cover are doing better, too. I had no idea that white silk was so healthful.

No more elastic around these legs. It’s too bad, because I’d just stocked up on undies. But of course, I got them on sale. It could have been worse.

Gratuitous toilet humor…

I stopped in a gas station that had the kind of bathroom I grew up thinking of as a gas station bathroom. It’s not chair-accessible (in fact, there’s hardly room for a standing person to turn around in) and the tile might be original with the building.

However, in a totally novel approach to graffiti, this gas station found a new use for the wrongest possible shade of brown paint:

There’s really nothing to add, is there?

I’ll take it and be grateful

I’m happy to say that it has been an otherwise fairly uneventful day. I’ll have to repair the male connector that activates Oliphaunt’s tail-lights, but it’s taped up and will do until I’m somewhere warmer and hurting less.

Heading South was a good move. It was bitterly cold on I-80. It’s getting more bearable every 50 miles.

I’ve discovered that not only stopping every hour and stretching, but running in place for a few minutes — until my whole body starts getting warm — really makes a difference. 

Exercise not only improves circulation and oxygenation, it helps stabilize the autonomic nervous system. This is my substitute for a 20 minute walk at every break, which is rarely realistic at highway rest stops.

I got 4 hours of driving time today, which was my target amount. Considering I’m in hard recovery from the previous 36 hours, that’s pretty good!

Well away from Pennsylvania’s peculiarly slimy water, here in roaring downtown Ashland, Ohio (you can blink without missing it, but don’t blink twice, or you might),  I’m curled up in a rather luscious little Super 8. (I did say my needs are simple…)

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The bath overflow is halfway up the tub, leaving a depth suitable for a footsoak. I tied a couple of loosely folded tissues into the plastic bag they leave in the ice bucket, stuffed it into the overflow gap, and it blocked it completely.

I put about a pound and a half (~3 kg) of epsom salt into the bath, and had a looooovely warm bath. My spine and hips and legs and arms are sooooooo much happier now, and I can bear to be inside my left leg. The thought of doing it again tomorrow is bearable, and that’s all I ask.

My sweetie is safe and well, my last lovely hostess’s internet is up and running, and I am warm and at rest. Life is good.

I’m awake now

After an obnoxious 4am pop, not surprising after a cortisol-saturated day like yesterday, I dozed until 7 when I could persuade my body to take consciousness seriously.

Thinking in terms of an early start. It was great. Then I tried to move.

So I spent a little over an hour on qi gong, stretching, and PT exercises. Much better.

I used my hot pot to make tea and my self-important Oster blender to make my shake, not with kale but frozen spinach, a soft mutzu apple and slushy blueberries.

It burned out the blender.

When I tried to take a picture of the really impressive clouds of smoke, my phone declared it needed updating. I took it as a cue to move forward rather than stand there gawping.

But I needed to get it off my chest. The scary negative crap can stop any time now.

"Plan" is a 4-letter word

Last night, in an effort to give my autonomic nervous system a chance to calm down, I turned off my lovely hostess’s wifi while I slept. Eventually, I did sleep, after several hours of meditation.

Why the insomnia?

People change with time. My sweetie is discovering that in the harshest way. A friend of 20 years is sinking into the pit of addiction and her transformation has put him at considerable risk, due to the company she now keeps and what they think of him.

I hadn’t heard from him since midday yesterday, and since we had agreed to call twice more that day for different logistical reasons, not being able to get hold of him was deeply worrying.

I followed my inner prompting to head away from the coast (where another storm is heading in, this one bitterly cold) and get to Cleveland, with the option of flying out from there to get to California to do whatever was needed for my sweetie.

I took off at 9:30 (woefully early for me) after plugging the router back in and forgetting my jacket — which my lovely hostess chased me down to my parking spot to return.

Worth a thousand words

Dr. Goyal and White Plains Urgent Care were a small parking lot and two buildings over from where my nav device had placed them yesterday. /sigh/

She was saddened and intrigued by CRPS, making notes in the margins of my sheet.  She was initially somewhat dismissive of my description of the bite, because this morning it was being coy, hardly red at all.

I said, “I knew I should have taken pictures. Let me draw you a picture.”

Despite my having explained its vacilating nature clearly, I know from long experience that they need to see it to believe it.

So, using the big white paper sheet they have you sit on, I sketched the bite when I first noticed it, half a day later, a day after that, and so on. I wound up drawing a series of concentric circle patterns, growing, then shrinking, then growing, then shrinking.

I finished by drawing an arrow from top to bottom and saying, “Would you trust that pattern? Because I wouldn’t.”

I walked out with a prescription for 3 weeks of doxycycline and having promised to follow up with my CRPS specialist.

I know it’ll take 3-6 months just to get my insides back into any kind of order. Could take up to a year. I had a bad feeling about this bite, so I’ll consider it time well spent.

 When people talk about Mercury Retrograde, this is what they mean

 While I was in there, my lovely hostess texted me: “Internet still not working – what to do?” An hour (and a lot of non-Mac behavior from her Mac) later, my best answer was, “Call the cable company; it’s a hardware problem.”

Doing unsuccessful telephone tech support for one dear friend behind you, for a problem you might have caused, while driving at highway speeds on strange roads, when you’re sick with worry over another dear friend ahead of you, is not something I would recommend. In fact, now that I can check it off my bucket list, I think I’ll try not to do it ever again.

Her life depends on the internet even more than mine. It’s not optional. I wanted to whip around and ride back to save the day … but for the lashing in my brain to go on, and the fact that her hands work better than mine and I know the interfaces by heart, so there was nothing — in practical terms — that my presence would have added.

I had a fierce feeling that, if I could get far enough away from the tangled vibes behind me, both of these problems would resolve themselves.

So, with solid logic on one side of me, and crystal-clear intuition on the other, I charged ahead.

I crossed the New Jersey/New York state line. Then my lovely hostess texted me to say that she had found a second loose connection — and that the internet was now working fine.

How to search for someone who’s gone missing

I crossed into Pennsylvania. I’d been stopping every hour to stretch and breathe, but I couldn’t stop mulling my sweetie’s situation, so I pulled over to start the legwork of searching.

Here’s the drill. The order varies depending on what you think the situation is, but, when someone has gone missing and you fear the worst, I find it’s very soothing to rule out the worst as soon as you can bear to:

– Contact the police in the area you last knew them to be in. (Use the non-emergency number; the goodwill is worth the effort.) Have they had any dealings with that person? Car accident, fight, anything? One of the first things cops do is ask for ID, whether it’s appropriate or not, so they’re likely to have records of even minor events.
– The police can connect you to the morgue. Rule out the worst, breathe a sigh of relief, and move on.
– Call the hospitals.
– If they aren’t admitted to the hospital, ask for the Emergency Room admissions, which may be a different number.

If all of those turn up negative, count your blessings and wait for them to get back into signal range or to realize they let their phone’s battery die.

First, I surfed the police logs to see if anything was reported. If there was any violence, then it’s a small enough town to turn up on the online blotter. Nothing matched.

I mulled whether it was worth calling the non-emergency number to see if they’d had any other dealings, and I decided to go straight on to calling the hospitals, on the grounds that any police involvement in the situation would be blotter-worthy.

Then the phone rang.

And it was him.

I really think there were gouts of steam poufing out of my ears. My eyes closed and I dropped against the door, so I’m guessing, but it felt like it.

He was slightly shaken, but intact, and maybe beginning to really “get it” about how some people change.

He told me emphatically to be careful who I trust, not to pick up hitch-hikers, and be careful who I talked to.

Naturally, I promised him that I would.

Just for the record, I have really great friends who always have my back to the best of their ability. I am one lucky human, and I know it.

Kylertown, PA (don’t blink… No, really,  don’t blink, or you’ll totally miss it)

After sorting out some logistics and stopping for a quarter of hot roasted chicken (definitely a local bird — tasty!) I came to the sinking realization that Motel 6 doesn’t go along I-80, and I can’t afford the ones that do.

Garmin is no help, because they just list the upper scale lodgings. Lots of B&Bs, but no cheap little roadside doss-houses.

I don’t need much, and can afford slightly less. It can be a problem.

I stabbed “Kwik-Fill Motel” on my phone’s map. What the heck, truckers know a thing or two about cheap dossing.

I spoke to a woman, which was reassuring; when I blew past the exit (# 133, if you’re curious, and it’s right after a wooded curve) she did a swell sales-job that convinced me to drive the 10 miles to the next exit and come back… and it turned out to be a good decision. 

This place has been in business since the 1970’s and has only raised its prices $10 since then. It skips the kitsch, thank goodness. My decent-sized room has the tasteful modicum of furniture with classy Colonial lines, with just the occasional bit of ’70’s carpentry or carpeting peeking around the edges. Decoration and color schemes are quite tasteful, for a motel, and — most importantly — the heater works.

A total find.

Next time you want to come to the wilds of Western Pennsylvania, you might as well plan an overnight at the Kwik-Fill; you can’t do any better, but you could do a great deal worse.

The only downside is, I wasn’t prepared for Pennsylvania water. I’d intended to bring a case of bottled for PA, but it was just like I didn’t have time this morning.

I’m going to run the bath and the fan, and give the whole thing time to clear the copious chlorine. If it doesn’t smell bad after that, I’ll have a nice bath at the end of this roller-coaster day. If it does, well, I’ll let it go and be grateful for the rest.

Not what I expected today

I got bitten by a deer tick right before leaving Massachusetts.

Lyme disease is, of course, something CRPSers are susceptible to, so I took it seriously, especially when the head popped off when we tried to remove it.

A two-tone rash quickly rose and fell with much hot salt water, but it rose again last night and I woke up this morning feeling glandular.

I found an urgent care clinic, called to make sure they take Medicare, and put it on my list of errands on my way out of Scarsdale. I returned one thing, picked up another, stopped at Trader Joe’s to pick up lots of kefir to help with the antibiotic impact, and pulled over at an AT&T shop because my newly-activated Galaxy S3 phone wasn’t behaving well — and wasn’t surfing at all.

(Mine is white.)

Two hours and a great deal of work later, I walked out with a phone I now know is not as unlocked as Negri Electronics said it was (it will soon be available on eBay, once I know what carrier it can use) and a brand new Galaxy S3.

The very capable and helpful young lady who got me sorted out gave me a tip that is probably worth what I’ve lost on the phone: Never buy anything that matters from a company that doesn’t have a customer service phone number on their web site.

What a simple, brilliant filter. No customer service phone number = no interest in staffing for customer service. Do you want any problems dealt with in a rational manner, or not?

The good news is, these phones are so hot I probably won’t lose all that much on my original purchase price.

Then I went to the address of the clinic, according to Google Maps, and there was no clinic there. In fact, nobody at the Family Center had any idea about it. I  should have taken the secretary up on her offer to give me directions, if only to check the address…

I wanted to cross the Tappan Zee Bridge (yes, those of you from anywhere else, that’s the right name) before the construction started tonight. So I did a search for hotels and motels on the other side.

They’re all full, probably with hurricane refugees, and the least expensive room I could find was double what I have budgeted for a single night’s lodging. Most of them were quadruple that.

It was getting below 40 degrees Fahrenheit and very dark. I called my hostess and turned back to Scarsdale.

Safe, warm and fed, this is beginning to look less awful.

It really brings home to me the pointlessness of taking plans too seriously. The linear approach has only ever yielded average results for me, at best; I can only excel in a more seat-of-the-pants kind of way.

It’s hard to accept, because it’s — wow — really, really difficult to start something when you have absolutely no idea what the finish might be, and are necessarily vague about even the next step.

The blind leap is exceptionally challenging, especially with a hotwired fight-or-flight response thanks to dysautonomia.

Try it blindfolded, with live wires stuck in your brain…

But I did get down that birth canal all those years ago, and that was the quintessential one-way leap into the void.

After that, any other trip oughta be a piece of cake. Right? Even if you have to start it twice.

Oliphaunt, the Thule Frog

Those of you on the central coast of California know that tule fog is what comes in when it’s hot inland and cool on the ocean. If you live there long enough, you can’t keep saying “fog” so — especially if your housemate is whimsical — you wind up using “frog” as a euphemism when it’s froggy out.

I couldn’t possibly get all my clothing, tech, and kitchenry into Henrietta and still leave room for a sleeping Isy, and a rooftop carrier would kill the mileage and my arms, so I had to come up with an alternative…

I stopped at ProLine in Wallingford, CT since they sell this, which is a cargo carrier with 3 features I really need: an accessible height, plenty of space, and a swing-arm so I don’t have to fight with the box to get to the back of the car.

It turns out that Stowaway ships direct from their warehouse on the other coast, but they had a slightly smaller Thule carrier. I asked to look at it to see if it would suffice. I thought it would, after measuring and peering and playing with the lid a bit…

Then it turned out they didn’t have the swing-arm version… but as he said so, I saw wheels starting to turn. Rather than dashing off, I explained a bit about why I needed it (“my hands don’t work so well; I can’t handle the Transporter’s drop-down hinge”) and stated rather baldly that, without the swingarm, I was screwed.

He said he might have the swingarm itself from a Thule Terrapin (which they discontinued for some silly reason.) He thought there was a spare one lying around somewhere, for some reason, and if the holes lined up…

There was.

And the holes lined up.

And it wound up costing less than my Plan A.

And, bless his heart, he got out a drill, put the whole thing together for me, and popped the monster into place.

Its gaping mouth… its long leggy swing… its sheer enormity…

Meet Oliphaunt, the Thule Frog:

The answer to my prayers.

Different souls, one world

I’m intrigued by how different the characteristic of integrity looks on different people.

My car’s detailing is being supervised by a very Catholic chaplain who really doesn’t lie, really does respect others, really does care about his world, and really does put his time, life and energy into working for the greater good. He’s pleasant and charming in a comfortable way, and his whole demeanor is slightly aglow. He’s a man on a mission, and it’s one that coheres with his best innermost self.

Obviously, what comes next is about the general perception of certain groups — not individual or local impressions, but the wider impression that history, actions/consequences, and the publicity about them, have left in the public mind…

The Catholic church isn’t known these days for turning out coherent, stable, disciplined characters, so it’s really good to meet one.

Lutheranism isn’t known for sweetness, and one of my uncles is both a devout Lutheran and one of the most kindly, gentle, nonjudgmental people I’ve ever met. It really works for him.

Atheism isn’t known for consideration, yet this culture of argument which so often defines itself in terms of opposition has turned out some of the most resolutely practical, inspiring and embracing activist-philosophers of any creed in this age.

It’s possible to go on for some time, but let’s take a moment to realize that all belief systems look a little odd from the outside, despite the fact that living a belief system is a seriously powerful thing to do. It’s one of the great ironies of humanity.

I suspect it’s a clue: it matters on the inside, but shouldn’t matter on the outside. Being responsible to our own internal structure (respecting our own uniqueness) makes sense, but trying to push our framework onto others (disrespecting the uniqueness of others) does not.

Decency and moral stature don’t belong to any one belief, but they do belong to the human race. Each of us is at least as different in our inmost selves as we are in our outward lives. When you think about it, it would be impossible — bizarre and irrational — for us all to believe the same way.

Anyone who finds a path — whether well-defined or idiosyncratic — that gives them, in their uniqueness, real strength and purpose holds a great gift and a powerful tool.

I no longer fear the differences of belief and it’s been a long time since I held any in contempt, but I’ve taken a step back to simply admire and appreciate them, filled with joy tinged with awe.

We are an astoundingly diverse species, inside and out. Such an abundance of different ways to be should make us fitter than ever to handle anything. When we enjoy and admire our variety, rather than fretting over it, I’ve noticed that that’s exactly what happens: together, we can handle anything.

After we had done the paperwork, this chaplain and I continued our conversation and I wound up telling him about the purpose of this trip, the reason I was dropping scarce money on prepping my car.

As I did so, I felt my own coherence of integrity coming into focus, the energetic union of innermost self and outer reality.

And I realized: I’m on a mission. Regardless of my own outcome, I’m certain now of leaving the world better for my feeble but determined efforts.

This radiant chaplain is going to pray for me and my work. The science shows that prayer and meditation correlate to better outcomes, regardless of the forms used. To bring the science back to life and into specifics, I know that the prayers of someone so coherently devout are powerful help.

I’m a handicapped woman on a mission which is technically impossible. But now, I do have a prayer 🙂

Peripatetic Stealth Gimp

Last week, I was in California, doing good and necessary things.

This week, I’m in Massachusetts, doing different necessary things.

I have to find a doctor in LA (long story) and soon will have to be there.

Meanwhile, I’m tired of being this sick and am determined to interview some patients and practitioners, make the time to put together what I’ve learned, and see what progress I can make against an impossible illness; this will probably, though not certainly, put me back in northern California for a bit.

I have a cat waiting for me in LA, a friend waiting for me in San Antonio, a family waiting for me in Vancouver, and the home of my bones in the Berkshires.

It’s very quantum: I can be sure of where I am or where I’m going, but not both.

CRPS, though, I intend to sort out.

My lovely Henrietta is going to get a double coat of wax this week. It’s nearly the last thing to do before I can — carefully, slowly, gently, mindfully, in short bursts, with at least an hour each of meditation and exercise every day — begin the long drive.

I just hope the gas prices go down. I’m going to be traveling for awhile.

Active learning

I’ve always been fidgety. When I get MRIs, I really annoy the techs because I think I’m holding perfectly still, but my body goes twitch-twitch-twitch. They think I’m doing it on purpose. I can’t even tell. Feels like stillness to me.

Aristotle was famous for walking with his students while having his teasing, maddening conversations with them. The old Greek word for walking back and forth (yes, they have a word for it) is peripatētikos. Strolling back and forth while learning and teaching has come to be known as peripatesis, the adjective being peripatetic.

I learn best with intervals of activity. When I can control my obsessive focus, I do best when I take a break every hour or two and … take a walk.