How to live down to your best expectations

It's common to want to be more helpful than one can be. Most people mean well, but will promise more than they'll ever do. At my most scattered and clueless, I must remember to keep my expectations very low. It's the only way to avoid bitterness.

Take person A, who offered to pay one of my bills when I had no other way to cover it. I got a call six months later from the payee, wondering where the hell the money was. I asked person A about it, who did not only forgotten, but had also lost each of the bills I had handed her every month. Since I had money on hand at the time, we split the six months. We are still friends.

Take business B, contractors who agreed to do a lot of the work for me. They gave me a terrific hourly rate, which is just as well, because they used a lot of hand tools where power tools would have been much quicker. They installed a motor mount, which was terrific, but never installed a slider that would let me use the motor on its beautiful mount. They installed a white-fuel stove, but the tank leaked slightly, so I needed the tubing rerouted to where I could turn the tank off when it wasn't in use. I bought a fridge, and they cut holes and built struts to put it on, bought a countertop to install over it, but never built the cabinet to put it on. And then came the holidays... several e-mails, text messages, and phone calls, which went unanswered... and recently, a mutual friend of ours has taken to giving me the sort of look that says, "I'm too nice a person to say so, but I have suddenly decided you suck."

So, looks like business B blew me off, without taking the money I offered for the work they had done, without finishing these glaring projects, and without so much as a word to me that there was anything amiss.

The many kind offers of, "just let me know when you need anything", "I'll give you a ride when I'm going to the store," I have learned to forget as soon as I hear them. Taking them seriously has never yet worked out.

There's no point in hoping for help, and asking for it must be weighed carefully because most people need a real trade-off.

I discussed this with boater R awhile ago, and he said, "That's horrible! That really sucks!"

I said, "Well, that's the way it is. I'm not going to get better, so I have to figure out how not to alienate people, and that means keeping my expectations very low."

The conversation went off to boats we had worked on together. I told him I would need help painting my little boat, and would be happy to pay 10 bucks an hour and provide a couple meals each day. He made a face briefly, then said that he knew a couple of guys who could do it; I didn't know them, which might be weird, and their English wasn't too good, but he was sure I could make them understand.

... Yes, R, it's horrible and it really does suck. But that's the way it is.

For good dramatic acting, hire a comic

Just watched "Reign Over Me". Adam Sandler's character has lost everything that gave his life shape and meaning. Don Cheadle's character has everything he's supposed to, and deals with (mostly) normal-sized problems, except for having such a whacked-out friend. In the end, Sandler's character begins to find ways to move on - literally.

It was good for me. Whatever I continue to lose & whatever I manage to regain, there's not much I can keep from before and even less that I want to. Hanging onto anything that doesn't do me a lot of good is just not very good for me, but letting go of things that did so much for me before (I'm thinking particularly of my flute, here; a perfect panacea, it was) does not bring back what I lost.

I have to keep re-assessing, and that's hard. Every time I've settled into a "new normal," things change again. I want to score but they keep moving the goalposts ... Not to mention repainting the lines, changing the scoring system and playing on a different field.

Maybe I should just throw away the rulebook. Hmm...

Canna bliss: a mixed blessing

P. gave me a discount card for medical marijuana evaluation, which brought the cost from $150 to $80. C. had a windfall, which she decided to share with me, and that made it possible for me to get the evaluation.

I totally lucked out on my first visit to the dispensary. I got something that smelled flowery and pleasant, I figured out how to consume it without killing the active components (which is way too easy to do, as they are highly volatile), and it took away 90% of the pain and totally stilled the constant running current of anxiety and trepidation (something to do with having no idea how I will pay next month's slip fee, or where I will go now that I'm being kicked out of this marina, or whether this next bus trip is the one where I stop being lucky and the inevitable crazy-violent-passenger actually does hit me, or whether my boat's windows will make it through the winter, or whether my older brother will ever be able to bring himself to be human towards me again.). Truly, you don't know what you've got till it's gone, and I didn't miss that river of fear one bit.

Moreover, it was much easier to think clearly, follow directions, make decisions, and hold more than one thing in my head at a time -- sometimes as many as two or three! (I'll take what I can get.)

What does it say about the profound neurological impact of complex regional pain syndrome that I am much less f'ked up when I'm high?

So that's the upside. The downside is that I have some emotional crap around marijuana, and I didn't realize how profoundly it affected me until I had to reach for it to get the relief that nothing else could bring.

I lived for four years with a pothead I had fallen very much in love with. When the chips were down, though, the pot was more important than me. I hardly ever got to see the person I was in love with, and it takes two to have a relationship.

Moreover, I don't like medication. I liked the brain I had, the clarity I had -- and am still occasionally capable of. I hate messing with the works.

This is too damn bad, because the works have unquestionably been messed with. Each time I add to my pharmacopeia, I go through this same inward drama. So there's nothing new there.

The interesting thing is that I'm running into some deep, old programming that marijuana is for losers. Well, there are quite a few things I would like to lose: all that needless fear, a whole lot of pain, and 40 or 50 pounds of extra weight. I'd love to be that kind of loser. (Most of the strains I've tried don't make me more interested in food.)

So maybe it's not about contradicting that old programming, but of turning it on its head: I can either say, "marijuana is not more important than me," or I can say, "marijuana gives something back to me, and that's important."

Rather than trying to hypnotize myself into believing that, "marijuana is also for people who are not losers," I can stick with that idea that, "marijuana makes me lose all kinds of crap. Hallelujah!"

I like that. It's clever, and creates a way forward. I'll let you know how it goes.

Straw woman?

I recommend this site: http://badcripple.blogspot.com. The guy has been handicapped a lot longer than I have, and he views the way people deal with him as being part of a larger context. This was especially useful about now. Here's why.

Without going into details, I had a survival crisis last spring. My older brother, after many years of estrangement, promised many things: considerable money, professional advice, and most importantly (to me) a willingness -- even a determination -- to figure out how to talk to each other and to heed me when I said he was being a bully. We exchanged a number of heart-wrenchingly honest e-mails before I could be persuaded to accept his help and risk rebuilding the relationship.

To his credit, he delivered most of what he offered. I was really impressed. I let go entirely of the feeling I had had for most of his adult life: "Who the hell are you, and what have you done with my brother?"

After several months and a couple of silly moves -- one on each side -- he sent me a flashback-inducing stream of bullying. I said I would calm down before replying; he delivered a preemptive strike consisting entirely of logical fallacies (largely ad hominem, false conclusions of several kinds, and a bit of post hoc ergo propter hoc, for any geeks out there.) I replied to what he said, so he turned it into a straw man argument -- another logical fallacy –- layered it with argumentum ad baculum and a few other forms of abuse, and repeatedly said he didn't know why I was so upset because he was being perfectly reasonable.

This guy is very smart. He's not terribly self-aware, but even so, his distributing such a stream of abuse and calling it reason is pretty weird. Not unheard-of, just weird. He proposed calling off our efforts to learn to be human to each other; I proposed a cooling-off period instead.

I was right back to, "Who the hell are you, and what have you done with my brother?" I've been simmering over the personal betrayal and the implicit and explicit threats, but Bad Cripple made me try to think in larger terms.

For one thing, funding critical home/vehicle repairs was a staggering gift. For another, however sporadically, I did get some good advice. For a third, I did get to deal, for a little while, with the profoundly sweet and loving person with the wise and subtle mind who does live in there somewhere.

I feel schizophrenic when I look at our early e-mails and then at our most recent ones. Such extremes, contained in such a small space or time, are not uncommon in my family (it's the borderline characteristic we were raised with.) However, my life is now so pregnant with inbuilt extremes that this needless chaos and drama has become unbearable.

With a nod to Bad Cripple, I try to put this in the context of species, society, class, upbringing, but it comes out as a very personal bellyful of anger. On my own account, I try to see it from different points of view: subjective, objective (to the extent possible), a friend's, a logician's, a clinician's, and I keep coming out at the same place: this is nuts. That doesn't exactly contribute to context.

Beyond remembering that he gave so much of himself for a few months, I can't come up with any bigger thoughts or any wiser understanding. It seems like a tired old story: patsy gets suckered into an untenable position, put under an obligation she can never repay, and then gets the knock-out blow. This isn't about being disabled; any vulnerable time will do.

I wish I could rise above my own species, class, or upbringing. For now, I'm still reeling with the whiplash of being emotionally seduced into trust and unprecedented vulnerability -- then being backhanded repeatedly across the room, flung across the room beyond that, then shown the door with the wolf howling outside. I do pretty much expect it from the rest of the world, but somehow, despite decades of prior experience, I did not expect it from him.

I really thought I had gotten my "real" brother back, but for now at least, the evil homunculus is back in charge. I wonder how long it will take for him to loosen his grasp again, and let my brother peek through for a little while.

I miss him more than ever.

Think outside the cow

Well, so much for worrying about my brain being toasted. So I drop a stitch now & then. So what. I have been reading scientific articles for 3 days now and they make perfect sense to me -- except some of the statistical stuff, which is pretty arcane.

Due to a characteristically long & zigzag train of thought, I wound up looking into the properties of milk from various species (including human.) Fascinating stuff.

Just so you know ... pasteurization and microwaving puts the kybosh on most of what I'm going to mention here. Those raw foodies are right about milk.

Important notes: Enzymes are a type of protein. So are antibodies and hormones. (Protein is a very generic word.) Protein can be denatured (broken, bent, or otherwise altered) by heat and acidity. If you can see the protein, the change is apparent, because the protein's physical properties change. (When you boil an egg, it turns hard and white inside because its protein is denatured. When you put vinegar & lemon on raw fish to make ceviche, it becomes opaque as the acid denatures the protein in the fish.)

Back to milk.

Milk in its natural state contains far more than water, protein, sugar, calcium, and fat. It carries enzymes and antibodies that stimulate the growth of "good" intestinal flora (like Bifidus) and that inhibit or kill bacteria, viruses (including influenza and Hep-C!), fungi, amoebas, and even cancer. (Blows my mind.)Each species has a distinct profile of how much of each kind of nutrient and enzyme is in its milk, and exactly what version of each of these things it carries. (There is only one thing called lactoferrin, for example, but many different versions of that one thing. As a parallel, think of different shades of a single color: the color of a lemon rind is different from the color of your eyes when you have jaundice, but they're both yellow.)

Enzymes and antibodies are generally fragile types of protein, easily denatured by heat and acidity and other types of interference. I won't go into the details of what I've learned so far of each species (I'm typing by hand and it fkin' hurts), but there are two things worth noting:
* Camel's milk is fully as magical as any Bedouin ever claimed.
* Lactoferrin (high in human, camel, and cow milk) has an opioid effect at the spinal level.

This is the first time I have seriously reconsidered the benefits of pasteurization. Given my trouble with immunity and pain, I may never buy pasteurized milk again.

Those with eyes to see

I went for a checkup at the pain center today. I told Bernadette, my nurse practitioner, about my current state: pain is persistently more extensive -- all the way through both shoulders, intensity is about the same as usual with a couple of spikes to 9-10/10 each week, medication barely adequate. On the good side, if I'm doing anything about sailing or working on my new keeled home, I can work far longer than I ever thought possible -- several hours at a stretch, sometimes. The pain comes up, but it doesn't flare; I can work through it without sending it out of control.

It's as if anything connected with sailing floods my system with so much happy-juice that it keeps the hellacious cocktail of the pain cascade mostly in the shaker. She was really stoked about my having a boat. And it doing me so much good.

Afterwards, as I was scheduling my next appointment, Mai Hong, the physical therapist who used to work with me during my 2-month intensive, saw me and came up to visit. She wanted to introduce a new patient (someone who was going into the next round of the program I did) to an alumna. The other woman looked like someone who's bearing up under the unbearable, so of course I treated her perfectly normally.

Mai Hong peered at me with fascinated intensity. "You look ... great! The expression in your eyes is different." She used to monitor my state by the look in my eyes.

She spotted, in my first few minutes in the program, what a desperate simulation every smile and word that came out of me was. She spent most of my 2 months there looking for ways to get through and around the hard, tight masks I wore -- either the brittle cheer or the anaesthetic depression, whichever one was up at the time. She helped crack it, and could spot the daylight coming through -- moreover, she could point it out to me and name it: "I can tell I'm seeing the genuine you." That was important.

I said, "You remember I was sailing with the disabled sailors in San Francisco?"

She nodded.

Smiling all over, I told her, "Well, I realized that made me really happy, so I bought a boat and I'm making it my home." (See the Handicaptain's Ship Log for more details.)

She gasped, and in her next breath said, "That's great!" and congratulated me. She just stood there another moment, still peering into my eyes, trying to take it all in.

"It's quite a change, isn't it," I agreed. She nodded. I realized the staring might seem odd to the newcomer, but I felt comfortable with it. I remarked to Mai Hong, "That's what we live for as healers, to see that change."

She said, "Ye-eah," slowly, still drinking in the sun-streaked life pouring off me, stunned by comparison to what she saw 6 months ago.

I've been questioning myself a lot lately -- old scripts trying to play out, I'm sure, given how unreasonably they've troubled me -- but I saw my "genuine self," as I am right now, in Mai Hong's peering, bottomless gaze ... and I felt absolutely fine.

This moment of inner peace brought to you by the pharmaceutical industry

I've lived in California for 10 years, bushwhacking regularly. Two weeks ago, I got my first-ever case of poison oak. It is still progressing, claiming new areas of skin at the rate of square inches a day. Anything worth doing is worth overdoing, apparently.

I can't take prednisone for anything short of imminent death. I'm doing the nonmedical things I can, from Aveeno and Apis mel., to scalding showers and ice packs. I'm also taking outrageous amounts of Claritin (to reduce my allergic response) and Atarax (to calm the itching).

So I’m loaded up on dopey stuff to cope with this systemic inflammation.

But wait, there's more.

Despite inheriting depression from both sides of the family, I managed my mood without drugs until I'd been dealing with chronic pain for five years, when my neurochemistry finally threw in the towel. Fortunately for me, antidepressants also help control nerve pain, so I get a two-for-one deal with the right drug – and one day, I will find it. Meanwhile, my psychiatrist and I are juggling pills.

We doubled the dose of the Efexor I'm already on. I thought, if I had too much, I'd start buzzing like 5 cups of coffee. Should've been an interesting contrast to the dopey stuff.

I didn't buzz, but I didn't care. The produce was all eaten up, but I didn't care; there was plenty of bread. I itched a lot, and I sometimes cared about that, but that was about it. Christmas was coming, and I was getting fat, and I just didn't care.

I had a feeling it wasn't right, but the sense of inward peace was wonderful. I didn't even care to find out why I didn't care. No worries, mate. Even the constant pain faded away. No worries at all. It was heavenly.

Well, we've backed off on the Efexor (although I'm still a bit wiffled on Claritin and Atarax.) And the inward roil has started up about where it left off.

I like the satisfaction of getting things done. I like taking care of myself. I like having something to look forward to – like getting the medication optimized.

I just remember that unruffled peace, that living stillness at my center ... and I yearn. What on earth would it take to feel that, normally? The obvious answer – a lifetime of meditation – overlooks the harsh reality of the need to scratch for a living. Without that cocktail of brain-bending drugs, I don't know if I can live in that place again. Since I still remember it, though, I intend to find a way.

What a thing, to be so inwardly still. Maybe I'll start meditating anyway and see what happens.