Damozel: The Disquieting Damozel.

Your Health Care Provider Secretly Hates You: The Unbearable Hostility of Hospital Waiting Rooms.

Drawn by Mr. Tenniel; painted by Damozel!

Homeless Bloggers

Sat, 15 Jul 2006 15:07:28 GMT

Hi! I've changed addresses! To jump to the updated version of this posting, please click here.

Homeless Bloggers: What's It's Like.

At Blogger Buzz I came across a posting that linked to this article at Wired News--"Laptops Give Hope to the Homeless"---explaining how homeless people can use blogging to re-connect with the world. There's also an excellent article at Salon.com about homeless blogger Kevin Barbieux.

Homelessness is a subject that causes me extreme anxiety if I stop to think about it. One of my dear friends is intensively involved in working with the homeless. Joe is a person of extraordinary grace, and also tact, who has no trouble looking another human being in the eye, without regard to the person's status. I am certain that he would address a homeless person, an A-list celebrity, the President, the prime minister of England, the Nobel prize laureate, and God with exactly the same equanimity. He is one of those people who can look suffering and humiliation in the eye, which is something that I have decided I must teach myself to do.

But the notion of a person living on the streets causes me intense anxiety. I worry a lot about my old age and whether I will survive it (hee). I am basically a contented person and I try very hard to like what I've got without coveting what I don't, but it's hard not to covet financial security. I do wonder what would happen to me if---God forbid; being widowed once ought to be sufficient---I outlive Nick and become ill or disabled.

The hardest part of looking directly with the homeless is realizing that they could be me. Some are just like me.

I think most of us are in denial about the people who have no place to go. We need to believe that there is something different about them; that for some reason they have chosen this life (or it has chosen them) because of some fatal flaw. But I have a fatal flaw: I find it difficult to help accept from anyone else. I do not like to be beholden. I'd rather live on the streets.

But what would that be like?

Postings at Blogger Buzz connected me to two blogs by two people, an English woman and an American man, who have gone through the failure-wringer----as in all the way through. They are very different people; but if you are willing to endure the pain, both can tell you if you're brave enough to listen exactly what it's like to stand in their shoes.

First, there is Wandering Scribe. No longer homeless, she got access to the net through libraries and such facilities. The theme of her life while homeless was shame; a constant contrivance not to be noticed by those who still had connections. She used blogging (when she can get to a computer) as a means of staying connected to the world.

[quote from Wandering Scribe's blog begins]

February 2006. For the past five months I have been living alone in a car at the edge of the woods — jobless and homeless and totally unable to find a way out of it. I can't sing, I can't dance, I can't scream loudly enough, alI I can do is write. So here I am laying down tracks...hopefully the start of an online paper trail out of here.

[quote from Wandering Scribe's blog ends]

"Wandering Scribe," her blog of survival at the fringe, is here. It's written with British reserve and occasional wry humor; the tone when she speaks of her rootless life is dry and detached, untinged by self-pity though her shame leaks through. She can write.

She has now found a place to live. But she hasn't forgotten what it was like to be on the streets or what it is like now for other people.

[quote from Wandering Scribe's blog begins]

There were boiling hot days like these when I first slept out in the car.....[S]ometimes, when it had been there collecting heat all day, the car's metal could burn bare skin and the interior was full of exhausting, nauseating, oven-hot heat, unbearable, the kind you have to physically force yourself to get in to: my hair would frizz, my body stick to the seats, grimy sweat from walking about all day would slide in greasy streams and collect in hot pools underneath me, and the inside of my head throbbed with constant headaches from breathing the hot, dry air full of car fumes. ....I gulped down bottles and bottles of the tap water I kept under the seat, always more than luke-warm by then, and with nowhere to shower and nowhere to cool off, dreaded another day of it, and another night of willing myself, exhausted, to sleep across the heated car seats after it. Hot days as extreme as the cold ones, and in ways just as bad. ....

In this sizzling heat, there are plenty of people out there sleeping in their cars, people trying to make themselves invisible, finding a way to get through. But even I, sleeping out there in August and the beginnings of that false promise of an Indian summer we had last year, before the cold came, and more recently during those first shockingly hot days of May, don't know how they do it on a day like today.

[quote from Wandering Scribe's blog ends]

BBC Online has published two articles about her: the original article that made her a celebrity of sorts and a follow-up. She's been interviewed by the New York Times; you can hear the interview at her site. She has a book deal and her site has been nominated for a major award.

It's the sort of story that is all too likely to make Americans like me sigh with relief---see, we don't have to do anything about her! And the Lord does help those who help themselves! And anyway, she's English!

Of course it IS a relief; it's a relief to know that the intelligent and articulate who lose the path can make their way back again via a paper trail. The thing is: what about all those others she mentions? The ones who would strike as deranged, unwashed, thoroughly unattractive, the dregs of humanity? Who are uneducated and smell bad; or who are illiterate?

Well, never mind, they're English too. Not our problem!

But what about our own?

For your consideration: an American story, less lonely and hopeless and heart-wrenching than Wandering Scribe's, but in its way just as grindingly painful. Michael Brown of Greensboro, North Carolina, near where I used to live, started a blog called View from the Sidewalk. Unlike Wandering Scribe, he didn't start it until after he had started to find the way back. But he's still not out of the woods---I imagine that for a person who has once been homeless, there is a sense in which one is NEVER ought of the woods---and like Wandering Scribe, he can really tell the story, give you the real raw taste of his shame and anger. His writing is less polished; and it is anything but detached. He testifies.

He and his family were evicted; and though they didn't have to sleep out on the street, they had to do what I would like even less: accept help from relatives and friends. I can totally imagine being in his place if I lost my job.

This article at News-Record.com sums up his story in pertinent part:

[quote from Greensboro paper begins]

Brown, who works part time at a Kohl's store, said he has been looking for other work. He was a graphic designer for 13 years until he was fired from a job in 2003 -- for what reason, Brown said, he doesn't know. He hasn't been able to find another job in the field and has worked various jobs or freelanced since.

The bills began to mount, and eviction came Feb. 9 for the family, which includes Brown's wife, 17-year-old son and 8-year-old daughter. A 20-year-old son is already on his own.

The family packed as much as they could into a 16-foot truck, and the contents of their home are now in a 10-by-20-foot storage space....

The Browns and their 17-year-old son stayed in hotels and with family in Durham. Their daughter also stayed for a week with a friend's grandmother. Brown said his family never spent a night on the street.

Still, the family struggled to find help. On his blog, Brown details going through a confusing maze of government agencies and groups that he said were not much help.

"We tried to plan, but it's hard when you have no experience doing it," he said.

Finally, a counselor at his daughter's elementary school recommended the Guilford Interfaith Hospitality Network, which coordinates churches to feed and house homeless families. The Browns and their two youngest children are now receiving help from the group.

[quote from Greensboro paper ends]

He hasn't been as unfortunate as Wandering Scribe or as (ultimately) fortunate. He's still struggling with both his circumstances and his emotions.

Michael Brown is a reflective man who thinks hard about the meaning of what's happening to him and who can speak firsthand about the sour aftertaste of failure, but who also brings that American belief in the power of a determined man to create change for himself:

[quote from Michael Brown's blog begins]

Speaking of guys in Jags, I did some thinking this morning while cleaning the kitchen* and my mind wasn't otherwise occupied. I recalled feeling a wave of resentment when I saw the guy in the Jag the other day. I asked myself why. Why did I feel resentment at the Jag driver? Had he harmed me or my family personally? No. Was I jealous? No. Was he a lawyer, and therefore worthy of my scorn**? Insufficient data. He could've just as easily been a doctor, an accountant or a university official. Was he driving recklessly, or otherwise endangering society? No.

Then why the heck was I so resentful?.... After pondering it a bit, I realized that the reason I was so resentful was that this guy represented all the possibilities I had either missed, squandered or overlooked. He had what he wanted. I didn't. Not sufficient reason to resent someone I didn't even know, sure. But enough to make me think through the reason I resented him.

As a result, I realized I didn;t really resent the Jag guy at all; I resented myself for not being him, and resented myself for having a hardscrabble life. The first I can't do anything about, but the second? Well, there's still time (even though I'll be 44 in less than two weeks). I can still go to training, or luck into a job comperable to the one I had at Trone. Hell, who knows? I might even hit the Powerball.

[quote from Michael Brown's blog ends]

He fends off self-pity and struggles with the same tendency to inertia all of us feel when we struggle and nothing seems to be about to come of it. He is wearily cognizant of American attitudes toward the poor and acknowledges that he himself feels impatient with some of them.

[quote from Michael Brown's blog begins]

[T]here are too many of us poor who think that it's cool to simply lay back and let the rest of society take care of them. All they do is give the rest of the poor a bad image by (what?) perpetuating a stereotype. There are many poor who struggle every day with jobs, health and child care, yet the image many in society see is the lazy, shiftless person who could work, but won't, and who uses the welfare system as a first course of action, not a last resort safety net. Sadly, I've run into too many of these people myself. But I take comfort in the fact that they're more rare than many political pundits would have you believe.

I try not to be lazy, but I have my days... Still, even though I take some welfare myself (food stamps and Medicaid, primarily for the kids) I'd rather pay my own way, so that I won't have to keep proving I'm poor to various and sundry social workers. On that note, some developments are occurring that I don't want to say too much about for fear of jinxing things. Stay tuned.

[quote from Michael Brown's blog ends]

He also says:

[quote from Michael Brown's blog begins]

Yes, I realize I could be worse off than I am; no, I'm not owed a damn thing; yes, I think that more people of means could be helping those of lesser means more; and no, I'm not going to shut up about the poor and homeless. Jesus said we will always have the poor with us; nowhere in the Bible does He say not to help them.

[quote from Michael Brown's blog ends]

Brown's View from the Sidewalk has a strong, gritty, masculine, down-to-earth North Carolina quality that naturally appeals to this ex-Carolinian. It's a strong contrast to the restrained stiff-upper-lip quintessentially English quiet desperation exemplified by Wandering Scribe. ["Hanging on in quiet desperation is the English way..."]

While doing volunteer work in my own community, the one thing I learned is that people don't know what to do when they lose everything. When desperate people called me, I spent a lot of my time just finding out what resources were available to them and giving them phone numbers of people I hoped could help them. Interfaith Hospitality Network, the organization that helped the Browns, is a wonderful, wonderful resource that helped a number of people.

But there isn't as much as I expect many people, including most middle-class people I've spoken to, seem to believe. And to get through the process of getting help, you have to jump through many, many hoops, and you have to be able to get to places such as the Social Security Office or the Salvation Army.

When people called from smaller outlying counties with fewer resources, I often came up empty when I went to look for help in our data banks. And over the years, some of the resources that used to exist have disappeared.

A large number of average people ought to be terrified by the experience of Brown and by the growing problem of homelessness, but it's hard to think about it because it's too terrifying. It's hard to help the homeless for the same reason. What if you give away too much and end up homeless yourself?

Now I am way better off than most people who haven't accumulated much money. Though I have a disability, it doesn't prevent me from doing the sort of work I do. Medication controls the more debilitating side effects. I have family who love me and who---though they live far away---would help me if I needed it and if I asked.

But having had at a certain point in my life to accept help, I would be reluctant to do so ever again. Honestly, I would rather disappear, rather live on the streets.

The poor we shall always have with us---because the poor ARE us. So this statement by Michael Brown really resonated for me:

[quote from Michael Brown's blog begins]

I've only once actually glimpsed someone sleeping under a bridge. I wasn't homeless yet myself at the time, so of course, the only thing that ran through my mind is "there but for the grace of God go I."

Little did I know...

[quote from Michael Brown's blog ends]

For an update to this posting, see this note in "Anglo-Saxon Attitudes."

Drawn by Mr. Tenniel; painted by Damozel!

The Etiquette of Dying

Tue, 11 Jul 2006 02:35:57 GMT

Hi. I've changed addresses. To jump to an updated version of this posting, please click this link.

The Etiquette of Dying

Lately, I've been chatting a lot to a friend who is a thanatologist. She does counseling for the dying and for their families, both before and after death, and works with a lot of Hospice patients. We had a really interesting conversation about death and dying and she recommended a couple of books for me. Our conversation really got me thinking.

I've become very interested in the subject of death. How is it we're so unprepared to deal with it? Seriously, isn't that a bit weird? It's the one thing---besides the fact of being born at all---that we all have in common and that we can all absolutely expect. Actually, it is not a 'bit' weird; it is extremely strange. We are an entire culture in denial about this basic fact of existence. Why?

It's not just us, but I think western cultures are less in tune with their mortality than some others. You would think the question of how to die and how to deal with death would be questions as absorbing to people as, say, religion, sex, politics, or anything else.

We tend to assume as a culture that other people---including those from other cultures----share our revulsion and fear, our belief that death is the worst thing. That is not the case, of course, and our blind spot in this respect gets in our way. We can't really understand the thought processes of a suicide bomber or a kamikaze pilot; we can't understand (at least not anymore) people who are casual about death, who kill casually, or even die casually. We are terribly reluctant---as a culture---to think about death or dying at all.

But shouldn't a sophisticated culture have better ways of coping with mortality? Shouldn't it also provide resources for the dying, and more education about death and coping with the dying> Why aren't we better educated about dying (our own) and about coping with dying (family members)?

There isn't much out there except for Hospice (good, but not enough) and religious organization. I don't think churches are the answer. Religion and beliefs about the fate of the soul after death are part of the overall picture, but only a part of it. In any case, questions about the afterlife are only the most abstract aspect. How does it feel to know that you are dying? How do you cope with knowing that a spouse or parent is preparing to die? How can it be done with a maximum of grace and a minimum of psychic pain?

When I was doing volunteer work, I had the opportunity to talk to people who were in the process of dying. The ones I talked to most were the ones who didn't have other resources to fall back on; they were people who were dying alone, having been abandoned by friends or family. I got to know of them quite well; they were terribly isolated. The problem in both cases---the reason that they ended up so alone--- was that they both took so long to die. One, a woman, lasted 10 years after diagnosis of a terminal disease; the other, a man, died slowly of AIDS.

The one I got to know best was the woman, Carol, who over the long period of her dying had driven off everyone with her demands for attention and sympathy. I wasn't surprised. From what I've seen, most people have a very limited amount of patience with the dying. They don't want to watch someone die and they don't know what to say to someone who is in the process of doing it.

Carol and the other dying people I talked to felt marginalized; in some respects, they were as isolated as the homeless. They wanted---they needed---- to talk about the business of dying. Unfortunately, Carol wanted to talk to friends and her family only about dying. She talked about it as if it were a misfortune unique to her. She had apparently forgotten that all the rest of us are on that same road, though (unlike her) we don't have a general idea of where we are on it at any given time.

Carol seemed to assume---which in a way is understandable---that no one else she knew had anything comparable in importance to talk about. She seemed to forget that the rest of us are dying also; we simply don't have the advantage of knowing the approximate time left to us.

Unfortunately, the perception that one's own misfortune takes precedence over any other is not an attractive one. Nor do most people have at command a limitless amount of pity/compassion/empathy. Someone dying very slowly needs to spread out very thinly indeed demands for attention and sympathy. Even the dying are likely to be told brusquely "Get over it," if they expect to be the center of attention and concern over an extended period of time---and particularly if they take much, much longer at it than the people who would otherwise mourn their passing can cope with.

While the dying are preoccupied with dying, life keeps happening to their family and friends. Their family and friends kept having their own problems the whole time. They needed support and attention too and sometimes felt too fragile themselves to meet her demands. It's a terrible situation. It tends to bring out the worst in people.

I felt bad for Carol, but I also felt sympathy for her family and friends. Those of us who are not dying are all certainly going to. The lives of the dying are not easy, but the task of dying isn't one that other people can really do for you, and it isn't as if they aren't going to have to die as well.

Furthermore, the dying are, while dying, still alive. To the extent possible, they need to be reminded of this and encouraged to stay connected to the world for as long as they can. They may not have time to write that novel they never got around to writing, but often there is still time to create something. Keeping a journal, making a videotape, painting, blogging, anything---all are better than waiting passively for the end. We need to focus on teaching people how to make the best of a drawn-out death. Furthermore, the dying need help talking to the not-yet-dying, and vice-versa. The dying need some structure and some intelligent support. It's not something people just know how to do.

But they also need to be aware of the needs of the living for attention and support. Particularly if your dying is taking a long time, you need (if you wish to have people around you) to be prepared to give attention and support to other people's struggles with their (comparatively) trivial tasks.

Carol spent her last two or three years becoming increasingly bitter and angry. Three years! In three years, there is time for someone generally ambulatory, as she was, to make something of what remains of her life.

But she was angry all the time. She wanted someone to be there with her every minute, waiting for the moment to arrive. She seemed to find it outrageous that her family and friends wanted to go on with their lives or that they would expect her to take an interest in their (lesser) problems. She felt neglected.

And we do tend to ignore and neglect the dying. We don't know how to talk to them about it. Perhaps we feel that death is sacred, therefore they should be set aside and sequestered. It's as if we feel that a person in the process of dying, however slowly, begins while living to lose their humanity and to begin to partake of eternity. And eternity scares the shit out of most of us.

What is needed---among other things---is an etiquette of death and dying. We need a culture for the dying and for the people around them; and we need an etiquette of death and dying.

I don't know the solution for this, but it's something I am exploring. My friend recommended a couple of books to me that I hope will extend my own understanding.

RELATED POSTINGS

Thanatology 101---The Need for an Etiquette of Dying.

The greatest of these is Empathy.

Image drawn by Mr. Tenniel, painted by Damozel!

Your Internet Face vs. Your Resume

Mon, 12 Jun 2006 22:14:43 GMT

Hi! I've changed my address! To jump to an updated version of this note, please click on this link!

Searching for Employment in the Too Much Information Age

MySpace partners with Simply Hired. MySpace and Simply Hired have launched MySpace Careers, a job listings site geared toward the MySpace demographic. [CNET News.com]

This announcement pairs up nicely with yesterday's headline from the New York Times: For Some, Online Persona Undermines a Resume. Kids today, eh? They have at their fingertips a whole world of ways to get themselves in trouble that couldn't have been imagined by their parents (many of whom know much less than their children about all the ways available for them literally and figuratively to show their arses).

First, there are the problems of the online predator and the identity thief. MSNBC did an excellent dateline presentation (shown here) about the very little information required to constitute a dangerous case of TMI.

It used to be that parents only had to worry about strangers with candy hanging around the schoolyard. My parents told me not to get in the car with a stranger EVER, period, with or without candy and never to get close enough to an adult in a car to allow them to lay hold of me.

It wouldn't have occurred to me or them to say to a child, "Also don't post a picture of yourself on the internet or any information that would allow a total stranger to identify you (or any of your friends) and track you (or any of your friends) down. In addition, don't give out information that would allow someone to steal your identity for purpose of obtaining a credit card, bank account, or access to any of your money or credit."

Second, there is the problem of the child pathetically attempting to attract a little internet notoriety or peer approval. One college student, desperately in quest of bad-ass status, posted a list of his "hobbies" that [1] would fool absolutely no one, even another 20 year old; and [2] would nevertheless be viewed by ANY employer, graduate school admissions committee, or future spouse as evidence of a serious flaw in judgment and a serious lack of self-esteem. In fact, he was rejected by an employer as the result of a bit of internet posturing by an employer who was previously all set to hire him. Sad!

But also reasonable. In a world where there are many more jobs than people who are qualified to do them, any little thing can tip the scale, and a colossal manifestation of bad judgment and juvenile values isn't really a "little thing." In business, image is everything, and if your prospective employer can find a page in which you reveal the full extent of your ass, so can your prospective employer's customers and business associates.

I think adults often assume that young people understand much more than they necessarily do about the dangers of email, net posting, and so on. I am in a field where I deal with many young adults. Many are surprised to be told (for example) that the email they send through company and university servers isn't private by any standards or that the "terms of use" that apply actually mean something.

They also may post information, find that it doesn't attract any obvious attention, and assume that this means that nobody has seen it or will see it. If you put it out there, children, it's out there. If you put it out there, it's going to be really hard to call it back. And if you post it under your own name and with a big old picture of your face, you've basically told the world, "This is who I'd like everyone to think I am." And that sort of information is way more revealing than almost anything else you could possibly say as evidence of your judgment and your values.

"Never send anything over the net that you couldn't stand to have someone read aloud in court," a person I respect once told me. "Treat an e-mail as equivalent to a postcard." (Thankfully, he told me way back in 1997 before I'd had much opportunity to embarrass myself )

A person posting on My Space, Facebook, or the like should view the posting as a billboard rather than a postcard. It's not a private communication but a virtual advertisement placed on the information superhighway in the hope that people will read it. People traveling that road may give it only a cursory look if they don't have any reason to be interested in you. It may fade into the background. for most of them You may forget all about it. But it's right there for anyone who wants to see it, including people who aren't part of your target market and who mean you harm.

RELATED POSTINGS

Blogging; why?

The Amateur Blogger’s Amateur Corner #1

The Amateur Blogger’s Amateur Corner #2

The Amateur Blogger’s Amateur Corner #3

My Brief Stint at the Top of the Pops.

Searching for Employment in the Too Much Information Age.

Antic Panic

Fri, 09 Jun 2006 21:49:18 GMT

Antic Panic.

It took me months to feel like writing again. I didn't know what was wrong with me, but I knew that something was. I was frightened all the time. I used to wake up at night shaking all over and in a cold sweat. I often thought I was on the verge of dying. I ought to have recognized the problem because I've dealt often enough with people in the midst of panic attacks, but I couldn't get my head around the fact that it was happening to me? Where did it come from? Why? Nothing had changed. Nothing was wrong. But telling myself what I already knew didn't do a bit of good.

Panic attacks. It took one visit to a doctor, one prescription, and about one week to erase them as if they'd never existed. The doctor said that recurrent attacks of extreme fear, with all the consequent emotional and physiological changes, can alter the brain's chemistry, making it increasingly difficult to attain conscious control.

To complicate matters, I had made myself genuinely ill. Chronic fear made my entire immune system go haywire. In the interim, I was tested for lupus, two types of cancer, and a variety of other possible problems---all the result of stress. But stress about what and from where? I have no answers.

I went on being able to work and to go through the motions of my life, but during the period when it was all happening, all of the things I like or love about my life just made me sad. I felt constantly on the verge of losing it all. I mostly felt numb because I was afraid to feel anything else. Looking back, I was very very lucky because it wasn't so bad that I was paralyzed; I could still do the things I had to do; I could still function. But I've never imagined that I could feel so powerless or so--for lack of a better word---'copeless.' Because though I carried on coping in a way, I thought every moment that I might stop.

I still don't know where it came from or where it went (how could a pill just wipe it all out); I'm just glad it's gone and glad I belong to the class of people with enough money to afford the medical care and the medicine.

RELATED POSTINGS

Your Health Care Provider Secretly Hates You: The Unbearable Hostility of Hospital Waiting Rooms.

Image drawn by Mr. Tenniel; painted by Damozel!

EPILEPSY

Sat, 10 Sep 2005 07:33:52 GMT

Hi! I've changed my address. To jump to the current version of this post, click this link.

Epilepsy. It’s Like This: Bzzzzzzt!

As disabilities go, it's not the worst. But having a seizure is definitely weird.

“What’s it like to have a seizure?” a young man currently under my tutelage asked me. “Is it true you can tell when one’s coming on? Does it hurt?” He had the right to ask as he’d just rescued me from being hauled off in an (expensive: $500) ambulance following one such episode, and he was worried.

[1] 'Ignore it and it will go away.' No, actually, it won't.

I had my first seizure that I know of when I was a year old. I had some sort of viral illness. It might have been meningitis, but was never diagnosed as such. After that, I didn’t have any problems until I was in second grade; I had a seizure one day in school. I was doing a writing exercise and suddenly I couldn’t write anymore. I was terrified and started to cry. I didn’t fall down or anything; I just couldn’t write. My teacher was surprised because there was nothing she could see that would explain it. My parents were annoyed, as they thought I'd just had a bout of hysterics. My father was more annoyed when, following the seizure, my handwriting deteriorated completely and I went from making 'A's' to making 'C's.' It was as if I really had forgotten how to form the letters; eventually---several years later---I re-taught myself. Nowadays, of course, handwriting wouldn't matter so much; but it mattered then.

My parents didn’t do anything about the problem till I was in my teens because most of the symptoms were pretty ambiguous and they didn't want me to have a permanent disability. To this day, my mother refuses to believe I have a seizure disorder. Her diagnosis---which is not shared by any medical professional----is ‘emotional problems.’ She feels that my seizures happen because I ‘let my emotions run away with me.’ That explanation certainly made sense when I was a neurotic teen-ager who suffered from serious pre-menstrual syndrome . Now that I’m in my post-hysterectomy forties and not particularly prone to mood swings except in direct consequence of a seizure, it doesn’t fit the facts as well. But oddly enough, it’s easier for her to deal with the idea that I might be really neurotic than that I might be disabled. I remember my dad yelling at me that if people found out I had ‘problems’ I would have to live with the ‘stigma’ for the rest of my life.

And there is a stigma. He wasn't wrong about that. It’s not as bad as it used to be, and people don’t dare discriminate against people for disabilities, but it hasn’t disappeared; it’s just gone underground. When I was in graduate school one of my professors advised me to give up my degree because I was clearly not going to be able to ‘cut it.’ An administrator gave me the same advice. Other students were quite frank about finding my disorder ‘bizarre’ and ‘off-putting.’ When I was working at my first job after I finished that degree, one of the bosses took me aside to say that while he personally respected me and considered my work exceptionally etc., there were other people in the company who found the fact that I had epilepsy ‘weird’. He wanted to know if I thought there was any chance I’d ever have a seizure in the workplace. I didn’t know, so I left soon after.

And I’m sure it does seem very weird to people who don’t understand how it happens.

[2] A very interesting disability.

So what’s it like? It’s a very interesting disability in its way, in that it can take many forms and manifest itself in many different fashions.

The onset for me feels exactly what like getting hit in the face with a high wind and blown temporarily out of the frame. More literally, it’s like---or perhaps just is---- a cranial short circuit. Bzzzzzzt! A spark jumps in the wrong direction and the whole brain goes on the fritz. But then after that, it’s like being anesthetized---you don’t know it’s happening once it stops gearing up to happen and is upon you. It’s the period of time before it starts, when you know it’s going to happen and there’s nothing you can do, that is really the worst part of it. In between it happening and being over, I’m nothing. It’s not like being asleep; it’s like having your consciousness temporarily (and for me, very briefly) erased. The Greek word means or implies ‘being taken hold of’ or seized. That’s right on target too.

And you do get used to it. It’s painless. You could get badly hurt falling down, but so far I never have. I’ve fallen down concrete stairs without getting hurt because I go so completely limp. I don’t know it’s happening, so if I feel anything at any level, I don't remember it afterward. I usually have a headache once I regain control over my faculties and I fall asleep whether I want to or not, but I’ve never been really injured as a result. A bruise or two, a cramp in my jaw (from grinding my teeth?); a bitten tongue; that's it.

[3] The epileptic 'aura'---those wacky precursors.

Like most people with epilepsy, I generally know beforehand when a seizure is in the mail, as it were. I sometimes know hours beforehand. Like many people with brain disorders, I sometimes smell things that aren’t there (most often, and inexplicably, the Estee Lauder “Youth Dew” perfume that my mother wore back in the 1980’s; occasionally, a sulphurous odor that smells the way a hard-boiled egg tastes if it’s been boiled too long; or the scent of fermenting peaches).

There may also be a subtle intensification in the colors of things, though that happened more often when I was younger than it does now. I'm sorry in a way for that because the pre-seizure euphoria made up somewhat for the aftermath. I used to feel---for hours beforehand---either euphoric or extremely anxious; I couldn’t sit still or concentrate. I still get a certain buzzing or ringing in my ears.

The biggest change is that I don’t get so much advance warning nowadays and sometimes the precursors turn out to be false alarms---like a sneeze that you feel coming on but that doesn’t happen. There’s even the same sense of anticlimax.

I used to have déjà vu, but of course you don’t have to be epileptic to have that. There are bouts of disassociation as well; you suddenly become conscious of yourself being conscious and it doesn't make sense and you can't get connected back to the part that says 'I'.

[4] Teenaged angst v. epilepsy: how to tell the difference.

When I was a kid I thought I was going crazy. I’d read books like Lisa, Bright and Dark, The Bird’s Nest, Sybil, and I Never Promised You a Rose Garden, and I thought I was on the verge of schizophrenia or multiple personal disorder. Something dark and debilitating. I don’t know what my parents thought but they were frightened. Despite my mother’s diagnosis of ‘emotional problems,’ they took me when I was 15 to Duke University on the recommendation of a family doctor/family friend, where I was locked up with a number of very mentally disturbed people for a month or so for a psychiatric evaluation. I didn’t mind that much; in a way, it was interesting, and---according to a diary that I kept and that I found a few years ago---I preferred being there to being in school.

I don’t think it occurred to anyone that my teen-aged ‘fainting spells’ and emotional instability might have a neurological basis. The doctors at Duke diagnosed me with (I think) ‘anxiety and depression’ and gave me some pills to take because pills are what psychiatrists use. I stopped taking the pills within a few weeks of getting home---since I was still having the symptoms, there didn’t seem to be any point. My parents took me to see a child psychiatrist but---needless to say---that didn’t do any good either. Nobody thought of ‘seizure disorder’ till I was in my twenties. They might not have done so then if I hadn’t mentioned to the ER doc that I kept wetting myself when I ‘fainted.’

[5] Embarrassing precautions....

And that is one part of having seizures that is seriously embarrassing. I don’t care what you say or how much you know it isn’t my fault, it’s embarrassing. I usually pee during a seizure. Since mine seem to come in phases and subside again, I go through periods of time when I have to take embarrassing precautions. But that’s not the worst thing.

The worst thing is that afterward, people always try to talk to me and even though it’s like having someone try to talk to you when you’ve been suddenly and barely awakened during a deep sleep, I always try to talk back. Imagine being woken up from, say, an alcoholic stupor and trying to explain yourself. After years of hearing people repeat back to me what I say in the post-seizure state, I'm not too surprised that strangers who don't know anything about epilepsy think I'm mad or on drugs.

If you’re epileptic, and people see it happen to you, they can’t help thinking the whole thing is a little odd. Prior to a seizure---and afterward---I’m often confused and hazy. I can’t speak properly. I can’t really understand anything that people are saying to me. I know some people find it weird, frightening, and freaky. How could they not?

[6] ....and then you might get locked up anyway.

Once, years ago, and in another place, I ended up being bunged up in a mental hospital until my hopping mad neurologist contacted the person in charge and insisted that they let me out. I was a bit upset myself, but here’s a tip; if you are ever involuntarily taken to a mental hospital, don’t get upset, don’t complain, don’t insist that they let you out, and above all don’t try to leave, because all of that just proves (from their standpoint) that you’re crazy. How then, you may ask, do you get them to let you out? I just have no idea. Fortunately, I had friends in high places.

Years ago, someone called the ambulance when I had a seizure in a store and bumped my head or something (at any rate, I didn’t get my act together very quickly). They assumed, I guess, I was on drugs or was mad. I say “I guess” because I don’t know what the correct procedure is for someone in that sort of state, but the way the doctor in the ER elected to bring me round was by slapping me repeatedly and shouting at me to wake up. I couldn’t. It isn’t something you can just decide you’re going to do.

My brother, a doctor himself---and formerly an ER doc---doubts that this could have happened and suggested that my memory might be playing tricks on me. In one sense I'm absolutely certain that it did, and can even remember exactly what the doctor looked like, both at the time and the next day when I stomped back to the hospital and pointed out to him that I might well have a cause of action against him for battery if I chose to pursue it (not that I would ever really have sued). Nevertheless, the moment he suggested that it might be a false memory, I started to wonder myself---did I imagine all of it? I am sure I knew at the time, but I don't know now, 15-20 years later. Which is another aspect of this problem that people who don't have it probably can't really grasp.

"Wear a medical i.d.," people advise me. But I am afraid to do that. I am at an age now where I could easily collapse due to some other cause. Some of the other causes could be lethal or permanently damaging if not immediately treated. My husband Don died of a cerebral hemorrhage. A cousin of mine collapsed due to a heart attack, was misdiagnosed, and ended up in a coma. Another had a sudden stroke. What if I fall down due to some other cause and the paramedics see my bracelet and just assume it is a seizure?

[7] It is possible to live a productive life without driving.

If you have seizures, they definitely limit some of your options. I haven’t driven a car for years. There was a brief period when the problem seemed to have gone away on its own, and I could have driven if I’d wished, but even during the very long period when I was seizure-free, I didn’t dare drive. I could have, but I didn’t. I could not bring myself to chance it----the potential consequences were too dire. And during the last few months, it’s started back up again---perhaps, one doctor speculated, because I went off the estrogen I’d been taking after my hysterectomy; or maybe because I hit my head really hard when I was crawling around under the stairs, I stood up where there wasn’t head room. I don’t know.

Anyway, I’ve adjusted. If I want to get somewhere, I walk, call a taxi, try to get a bus (I say try because it takes one and a half to two hours for me to get from my home to my work by bus because they run so infrequently) or try to find someone who’ll drive me. My husband has to spend a certain amount of his time chauffeuring me around. I’m lucky he is willing. Bike-riding isn’t a good option for a middle-aged lady who favors dresses and high heeled sandals; if I have to transport myself, I walk. So I guess the upside is that it has had some very healthy consequences.

[8] The care and feeding of a seizure disorder.

As for the medical side of things, I had a long period of being seizure- and neurologist-free, but now I’m once again in thrall to my doctors. I hate it. I have to take medicine and I have to be able to pay for it. I don’t have the option not to and I therefore don't have the option (if I wanted to) to quit my job.

It can get expensive. I sometimes get picked up by ambulances against my wishes when I am still too out of commission to protest, incurring substantial costs that my insurance is far from sufficient to cover. Last time, I think my ER bill was $1500 (thank God for insurance) and as I said, a short trip in an ambulance can cost $500. My insurance doesn't seem to cover much of that.

I’m on medication now, but I also read that ketogenic, i.e., low carb diets, are effective. My doctor didn’t tell me that, but an epileptic friend who has had some success with ketogenic diets did. My experience verifies this. Exercise---and getting enough sleep, which is the biggest challenge for me---also helps.

[9] More or less like anyone else, especially Howard Stern.

Nobody can tell by looking at me that I have the problem. I look more or less like anyone else. Sometimes I do have to wear dark glasses indoors to cope with fluorescent lights, flickering reflections, or flicering computer or TV screens. ("Who are you supposed to be, Howard Stern?" someone who didn't know about my problem once asked me).

[10] Luckier than some.

So that’s what it’s like for me. I don’t know how it is for others. A few years ago, when I was doing something else, I once had a student who had such severe epilepsy that he couldn’t function at all. He couldn’t afford the medication and he had to drop out. And there was nothing we could do to accommodate him that would have served---he couldn't work or function normally. I wonder what happened to him or if he ever went back to finish. Another woman I know of through my volunteer work was so poor that she couldn’t afford doctors or medication; she drowned in her bathtub a couple of years ago, like Mark Twain's daughter Jean.

Both of them had it much worse than I do, so I am one of the fortunate ones. I only have the problem sometimes. The people I work with are educated; they would never hold it against me consciously. I have insurance (or I do as long as I can remain employed). I have a husband who understands that I have this disorder and who is willing to support and protect me.

[11] If I only had a brain.

Wikipedia lists some famous and even celebrated epileptics, including (but not limited to) geniuses who have made a permanent mark---in their very different fashions---such as Socrates, Julius Caesar, Alexander the Great, Handel, Dostoyevsky, Harriet Tubman, Kierkegaard, Victor Hugo, and Van Gogh. I wonder how they can be so sure of some of them, but I’ll take their word for it. They weren't exactly happy people---and look what happened to Socrates and Caesar---but you can't argue that they led productive lives.

RELATED POSTINGS:

Your Health Care Provider Secretly Hates You: The Unbearable Hostility of Hospital Waiting Rooms.

Image drawn by Mr. Tenniel; painted by Damozel!

The Ghost in the Image

Wed, 07 Sep 2005 22:19:52 GMT

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The Ghost in the Image: Photography & Memory

Photography recaptures the past more effectively than a videocamera ever can or will. It's a sort of magical recapturing, not only of the moment, but of what preceded and followed it. And if the photographer is long gone, of the world as it presented itself to that person.

I have a lot of photographs of my late husband Don and my first husband, whom I divorced when I was 30. I was going through a trunk and ended up looking through a pile of them.

I contend---and I know most people would disagree with me----that a photograph is a far more evocative and powerful aid to memory than a videotape. To me, a videotape is as puzzling and unrevealing as reality itself as it unscrolls before you. It’s also equally random. Here, a beloved and usually cheerful sister-in-law sits in a porch swing, wearing a brooding expression and looking pointedly away from the inquisitive lens. There my mother---a natural star----plays to the camera, waving, calling out, smiling. The children, always eager to be the center of things, dress up in costumes, chatter, and perform. My brother, never what you’d call the social type, scowls and moves out of range. The lens moves over and away from things. It’s always on the move. And like Heisenberg’s observer, it alters the reality into which it intrudes. People become conscious of themselves and stay conscious.

But a photograph that I’ve taken myself is a sort of node or gateway back into the layers of my own memory. There was a moment before and after. There were events that surrounded those moments. It happened quickly, before people could arrange their faces, their clothing, their posture.

It’s true that most of them aren’t of people looking sad. I was always a polite photographer. But there are photographs of people shortly after they looked that way. There are a couple of photographs of people taken days or weeks before they died. In the pictures, their image stays with me and it stays still. Why did I not notice how old my late husband (only 55) had suddenly started to look before the aneurysm? In the photographs, you can see a change in him, as if his body had got the message weeks before the event. This irrepressible and charismatic man who in earlier photographs was invariably joyous and smiling, suddenly looks haggard, unsure, bereft. Why? By which I mean, why did I not see this? In the photographs of a family party shortly before the event, he’s smiling, but the smile doesn’t go all the way to his eyes. His eyes are remote. In all the photographs, he’s already not quite there with the rest of us.

When I look into the pictures of the past, I can remember every single thing that preceded and followed it---not how things looked so much as how they felt. Many of the memories are ambivalent, mixing up happiness and the reverse in the way life will. Here, for example, is the photograph of my stepson (five or six at the time) laughing and---egged on by the irrepressible father---sitting in a British taxicab that some local ‘pub’ had parked outside as an inducement to tourists, naughtily giving the camera the English two-fingered finger. Five minutes later he was throwing one of the worst tantrums ever because his dad decided we wouldn't have time to play miniature golf after all. And the picture makes me really sad because where is that little boy now? I mean this literally; his mom, who walked out on his dad when he was two, never liked me, never stopped resenting me, and never allowed me to see him or speak to him again after Don died.

In the photographs of my first husband, you can also see a transition. I never thought about it, but in my younger days I must have had a weakness for irrepressible guys, because thought they had little else in common, they had that. The first was literally ‘full of fun,’ looking for fun, expecting it. “He always has that twinkle in his eyes,” my mother said. But in the later photographs, before we broke up, you can see how fed up he was. Again, the look has changed; the twinkle is gone; the twitched-up smile put on for the camera is clearly exactly that.

I’m looking now at a photograph of myself, years ago now, dancing at a tourist bar, with my arms are full of small stuffed animals that Don won from one of those vending machine games where you pay for the chance to ‘win’ one of them by picking it up with a hook or claw and dropping it through a chute. He went through a period when due to some quirk in his chronically wavering luck he could clear out any of those machines anywhere in a single night. He used to do that on a regular basis (much to the disgust of the owners). We gave away an enormous sack of them to a children’s cancer ward, but I kept back a couple of them. They were only cheap little things, not worth as much as the price of your chances, but lots of people try for them and fail. During that period, Don never failed. It seemed like some sort of trivial magic.

Anyway, in this picture I am laughing, but even someone who didn't know me would see the anxiety in my expression. He was on the point of losing another job---he was in a very high turn-over industry----and he was dealing with it by spending his time in bars drinking and winning little stuffed animals from vending machines. He thought it was a sign of something, I think. I wanted to believe it was.

There's an earlier one of Don, me, and the kids at the Sandford zoo. Everyone's smiling, but even in the ones my stepdaughter took you can sense a certain distance and opposition between Don and me. Even in the ones where we are sitting together, we aren't really in synch. That picture was taken after the very first time I really saw him lose his temper and---in his parlance---'throw a wobbler.' It ended with him picking up the cordless phone and hurling it against the wall, where it smashed into a thousand pieces. The only thing I can't remember is why. I am sure I was implicated.

Later, after his father died and things began to go seriously against him---he took it personally; he'd always believed himself to be fortune's favored; and, applying the fallacy post hoc ergo propter hoc, he blamed me for it----the outbursts became more frequent. On that particular day, though, I was shocked into placating him so we could go ahead with our zoo plans. So here I am, smiling qualifiedly into the camera, holding up my stepson so he can feed the emus, sitting perched on a bench with the stepson on my lap and my stepdaughter on the other side of me. It was a nice little zoo down in the south central part of the state; I don't suppose I'll ever get the chancee to go back now. The pictures remind me not only of the fun I had feeding the animals but also of the misery that preceded them. It was all transitory and it all feels the same now.

Photographs hold still. They show you beyond any possibility of dispute how it looked. A videotape is always moving and the faces often go by hastily as the person being filmed waves it away. More often than not, the person being filmed looks irritable, frowns, holds up a hand to cover the camera, and looks away till it’s gone. People are easier to capture in a flash or the blink of a shutter; or they don’t have time to react till it’s gone.

Looking back at my old photographs, the most evocative aren't the ones I took of them, but the ones they took themselves. For example, the first husband, from whom I was divorced: if I ever doubted that there was a time when he loved me, I can look back and see the proof in the sheer number of photographs there are of me, studying, eating, sleeping, playing with my cats, playing on a kid’s swingset, hiking, drinking wine out of the bottle, etc., etc. The pictures have that irrevocable, bygone feel: the young person in them could be a stranger; I’m nothing like the person she was and I don’t like her or want to remember what it was like to be her or to feel her feelings. But the person on the other side of the camera was someone whose unfailing affection and generosity and trust I had to grow up to understand, and whose value I didn’t recognize until well after the fact. It’s odd how much of that comes through when I look back at him looking at me.

As for Don, the strongest and most evocative and least ambivalent memories I have are the ones that surface when I look at the many landscape photographs he took when we were pursuing that hobby. It seems extraordinary to realize it, but when I look at one of my all-time favorites, a photograph of a canal in the charming town of Cedar Key, I’m literally seeing what he saw during a period of our life that is not only gone but that can never be recovered or resurrected. And the same holds true for the photograph he took the first time we went to a certain quiet family beach where his sadness and anxiety was temporarily alleviated by the intense colors and especially the amazing yellow tint of the rocks they'd dug up from the sea against the very blue water.

Looking through those photographs isn’t like looking through a window into my own past but like looking through his eyes into his. Extraordinary.

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Thanatology 101---The Need for an Etiquette of Dying.

Image drawn by Mr. Tenniel; painted by Damozel!

Compassionate Conservative

Sat, 03 Sep 2005 23:50:45 GMT

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The Heroic Medical Professionals of New Orleans---and then there's Dr. Zed. Paging Dr. Zed! Um.... never mind!

It's impossible to overstate how much I admire the medical people who are there on the scene. Their role in lessening the death toll and giving some people whose plights would otherwise be hopeless a fighting chance cannot be overstated.

Which made my friend Jane's experience yesterday all the more difficult for me to process. Jane was recently diagnosed with a certain chronic but non-life-threatening neurological disorder. To control it, she must take medication (probably for the rest of her life) that affects her concentration and, to a certain extent, her short-term memory. She's been most depressed. As an epileptic myself, I understand the depression.

Her neurologist didn't want to discuss the depression since, according to her, it is 'not one of the side effects' of Jane's medication. Instead, she referred Jane to a psychiatrist---not for 'talk therapy' so much as to oversee the administration of drugs to control the depression. (Selective serotonin reuptake inhibitors, yay!) Yesterday, Jane got a call back from the quack in question. (DISCLAIMER:. I use the word 'quack' strictly in the British senses, as a generic term for 'doctor,' and because I couldn't resist the phrase 'quack in question.' Dr. Z has sterling credentials and the highest qualifications.)

Jane called me, voice trembling halfway between hysterical giggling and hysterical tears, to tell me about the conversation. "This is Dr. Zed (not his/her real name)," said the Q in Q. "I received your call. What is this in reference to?" Jane explained that her neurologist had suggested that she see Dr. Z. "Are you taking new patients?" Jane asked.

"Yes," said Dr. Z briefly. "But first, I need to find out how you are going to pay. What sort of insurance do you have?"

Jane, who is sensitive, said, "I almost fell over. I mean, what am I supposed to think of a doctor whose very first concern is money? He/she didn't even have the decency or the civility to try to sound interested, or concerned, or make any attempt whatsoever to convey that once we got that settled, he/she would regard me as something more than a check from the insurance company. But anyway, I told him/her because it matters to me as well----I won't go to someone my insurance won't pay for. I said, "I have [name of insurance plan]. Are you a provider?"

"Yes," said Dr. Z---again curtly. "Do you know what portion it will pay? Are you the policy holder?"

Jane said, "Yes, I am. I am the policy holder. I am positive that my insurance covers it. If you are on the plan, as you say, it will pay 90%. I am a professor at (name of College) and I can pay for your services even if they won't. Will that do?"

"I'll have to check. Could you give me your insurance number?"

Jane, seething now, provided him/her with her insurance information.

"Where did you say you are employed?"

Jane told him/her again. "I'll get back to you and let you know," said Dr. Z.

"Let me know.....what, exactly? If I qualify?" Jane said. She was being sarcastic, but it didn't matter because Dr. Z had hung up.

"You're not going to let this person treat you, are you?" I asked disbelievingly. "I mean...you're not, right? Did you tell him/her when he/she called back that you would not be requiring his/her services?"

"No, because I didn't hear back," said Jane. "I guess I will hear on Tuesday."

"And you'll tell him/her to piss off, right?" I asked. "I mean, damn, Jane. That's just...... you'll tell him/her why, right? Right??"

Jane sighed. "I am pretty desperate," she said. "And I imagine I won't hear anything before Tuesday. I really need to get started on some sort of medication. I am having a lot of trouble getting on top of my work. But after I've got a prescription, and I've got my head together again, I will definitely share my thoughts with Dr. Z. And you know me."

I do. When fully functional, she is amply capable of administering a thorough moral drubbing in a few well-chosen words. She has that gift.

How can some doctors (my brother is one) be so good and courageous (my brother is good and courageous) and others be like this eminently qualified but abominably rude Zed? And even more to the point, why do people put up with it? Medical personnel---including those who are not doctors---include some of the rudest service people on the planet. Why do we let them get away with it? Why don't we complain? Shop around?

And yes, I know that doctors, lawyers, and other professionals need to make a living. My dad, an optometrist, used to say, "I have nothing to sell but my time." But he would never have initiated a doctor/patient relationship by dickering with his patients. He liked to be paid as much as the next person, but he knew damn well that professional behavior requires you to behave as if getting paid was the last thing on your mind. He had the grace to make his patients feel that helping them was his first priority.

I think most patients would be perfectly happy if the doctor would just pretend.

RELATED POSTINGS:

Your Health Care Provider Secretly Hates You: The Unbearable Hostility of Hospital Waiting Rooms.

Image drawn by Mr. Tenniel; painted by Damozel!

Death. A complaint

Mon, 22 Aug 2005 07:19:29 GMT

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How Donne Missed the Point.

"Ask not for whom the bell tolls; it tolls for thee etc. etc." Yes, but that's not the worst thing. If its tolling for you, you can't hear it and you don't care about it. It's when it's tolling for someone you care about, on whose existence you've shored your life, that you experience the reality of death. You don't know the hour of your own death, but you also don't know the hour of anyone else's. In my opinion

You’re going through your life, under the illusion that things can’t change much and perhaps even that you have some control over whether and how they change. Then your spouse, lover, mother, sibling, best friend dies. A huge hole opens in reality. An essential piece is swallowed up in the voice. You can believe what you want about meeting them again or about their happy reunion with God; they're gone. How do you cope with that? Having someone you love just disappear feels like a form of insanity. You tell yourself it can't be true. You didn't authorize it; they didn't ask you first; you weren't given any notice and nobody cares how strongly you object. The person is gone. Why? How? How can someone be there one minute and gone the next? How can there be no answers to something that fundamentally changes reality? How can there be no controls?

The greatest superstition in contemporary American culture is the illusion of control. And we hold fast to it. Our first response to seeing or hearing something to remind us that the case is really otherwise is to look away as quickly as we can.

On television when we see death happen, we see only the moment, with perhaps a glimpse or two of the chain of events leading up to it, followed by another glimpse of the aftermath. But even the worst agonies of the bereaved are limited to them tottering at the grave after the funeral, being held back from leaping in after the recently departed perhaps, or waking up to cry in the night. Most often, we see them surrounded by friends in family; if we do get a glimpse of their private pain, that’s what it is: a glimpse. You very seldom get a sense of the main feature of grief: that it goes on. And on.

And we find the spectacle of that limitlessness appalling. We haven’t got a program for it because we can’t bear to acknowledge that it is certainly in store for us. We want people who are grieving to stop. We want them to get over it, to pull themselves together. We don’t want them to talk to us about it because empathy with the grief of someone whose friend or lover or family member has died is too terrifying. Stop being wrecked! Recognize that you have no choice but to go on! Stop moaning about something you can’t change!---or at least be decent enough to protect others from the sight of it. Which is exactly what people do. In my volunteer work for an organization that deals with people in Crisis, I’ve spoken countless times to the bereaved who cry to me----a complete stranger----because they can’t cry to the people who ought to be comforting them.

It is a mystery. Do those other people who can’t or won’t help their own friends or family through the bereavement following a death imagine they are exempt from that same annihilating pain?

Some of the most callous people on the planet are those in the medical professions. They’ve seen it before. It happens to everyone. They know you’re upset, but they don’t want to know you’re upset. They can ignore the family members waiting outside the ICU because it’s not their job, not their business, not their problem, to reach out.

We don’t want to know about pain or suffering first hand for the same reason they don’t: if you witness it, you tend to feel that you ought to be doing something about it, and we don’t want to have to do anything about it, because the more you do, the more you see.

It’s basically no one’s business, generally speaking. Though FYI, if you are really desperate you might consider hiring (for a substantial fee) a ‘grief counselor’ or a thanatologist.

Why are Americans so unable to deal with mortality? Clearly, that hasn’t always been the case, but it has throughout my lifetime. Do we all secretly hope that someone is going to make an exception for us and the people we love? Do we think that since we can’t do anything about it, there’s no use thinking about it?

Nothing could be further from the truth. Learning to face death and cope with it is an independent branch of knowledge in some cultures. People train for it. They study it. They learn how to deal with both the time preceding and the aftermath.

It seems to me that we’re like children about it----hide your head under the covers and maybe Mr. Death won’t take any notice of you. Why do we spend so much time distracting ourselves with stupid diversions and wasting our time instead of preparing ourselves to deal with reality? Why don’t we reach out to the bereaved as a way of educating and preparing ourselves for our own inevitable encounters with death?

To me, my own culture seems both shallow and strangely muffled. We put so many things and so many preoccupations between ourselves and the reality of human life. To keep from having to think too hard about the certainty of future pain (assuming we ourselves survive), we do our best not to know about the pain of others. We isolate the dying, trying to see and know as little about it as we possibly can.

Politicians like George W. Bush avoid the sight of the coffins coming home from Iraq and the tears of Cindy Sheehan not because they have no feelings about the dying, but because they do. A person who truly allowed himself to see the human cost of a war would have difficulty carrying on with it. To carry on with it---assuming someone who believes in the rightness or righteousness of doing so---you have to make up your mind not to see. Bush’s avoidance of Sheehan and the efforts to insulate the public from the cost of the war are necessary aspects of carrying it on.

They’re simply making use of our willful refusal to think too much about the consequences. I know I can’t bear to think about it. How many people have more or less said Cindy Sheehan should shut up and be satisfied that the U.S. is continuing to wage a war and to sacrifice other young men to ensure that her son’s sacrifice means something----and how many more, while expressing sympathy for her and indignation against George W. Bush, secretly wish she would? No one can easily tolerate the sight of a mother who just wants to hold her child again and who simply refuses to let go of her grief or her anger. We don’t want to think about it. It’s happening, we can’t control it, and so we try not to dwell on it.

This is willful ignorance. And I am sure it is the source of much of the anxiety in American life. We are constantly working to keep ourselves in a state of denial about death and its meaning within a community. We don’t even have communities. We stay closed off in our little individual cocoons, entertaining ourselves with electronic spectacles---sex, violence, and stupid pratfalls that are now ours and that we do not known----and we rigorously limit our actual experience of others to just the amount we feel capable of coping with at a given time.

We are so insulated, that something truly out of our control like the tsunami or some other random and seemingly pointless demonstration that the universe is basically indifferent to who lives and who dies shocks us to our core. Some people regard it as a sign of God’s wrath; others who find the view disgusting nevertheless can’t process the notion that from the point of view of the universe, the loss of hundreds of thousands is of no significance. Quoting the novelist J.G. Ballard, “How long would they have lived in any case? Lives as cheap as fish in the sea.”

I don’t think that the universe is troubled and I don’t think that the God I reluctantly affirm regards death as a disaster. It is not a disaster for the deceased, certainly, who either cease to be or get to move on to some unimaginable next stage. The disaster is for those left behind, those of us who build our fragile little ant hills in a universe of forces that could annihilate them in the blink of an eye and tell ourselves we’ve found some sort of safety.

But there is no safety in building your life around another, or any, human being. Though there would certainly be increased protection is in building up the broadest possible community of people who care for you and for whom you care for in return.

Instead, we are going in the opposite direction----toward further isolation, further insulation, further ignorance.

And I don’t know what to do about it or how to find any way out of it. I know that one might always turn to God, but in my view, God would be incapable of understanding the fuss we make. After my husband died, I had a peculiar dream in which I was complaining to him about the difficulty of carrying on. He shrugged and said, “Don’t make such a production of it. You won’t live forever either.” And actually, it was helpful to me to remind myself of that when I started feeling that my grief, anger, and fear would go on and on and on. And of course they didn’t---thank God for Nick.

But what if something happens to him? If he and I are separated for a few hours, he has to leave messages to let me know he is okay. If he is a few minutes late, I start to panic. It’s pathetic, but it is also the ‘realest’ and most tangible thing in my life---the awful, constant, metallic taste of fear in my mouth. Fear of it happening again, of being left to go through it again, and the sheer, mind-boggling recognition that sooner or later, it is going to. My mother. Nick. Certain close friends.

I can’t forget about it. But I’d like to find a way of preparing for it that consisted of something more than anticipating the pain (and undergoing it) in advance of the fact.

RELATED POSTINGS

“Infinite & Unforeseen.” The Cathars, the Quakers, T.S. Eliot, & Me

Image drawn by Mr. Tenniel; painted by Damozel!

Success!

Sat, 20 Aug 2005 00:56:43 GMT

Success!

Nicholas has made the Dean’s list at his school for the third consecutive semester. I’m so proud---except for the ‘B’ he received in the second of his two algebra courses, he’s had nothing but A’s. I’m very proud of him.

He went back to school after he moved here from England because it was clear that he needed to get some training in order to find employment in this community. It isn’t easy for a man who is, shall we say, ‘comparatively middle-aged’ and who never completed his degree to start over in a new country, particularly in a city with such a large population of people under 30 where you can’t throw a stone without hitting a Ph.D or MBA. He’s training to be a paralegal or Legal Assistant. We are discussing whether he should go for his Bachelor’s degree after he has completed his two-year course and been certified in that field. Sadly, it’s simply a question of whether we can afford for him to continue. I’m guessing probably we can’t, but we’ll see how it goes when the time comes.

I’m still astonished that Nicholas never completed his degree. While growing up in London, Nicholas was fortunate enough to attend some of his country’s best schools. I have never understood why, after getting his A levels, he didn’t apply to an English University, but this was the Seventies. He wanted to go to a university in Canada and that’s what he did. When he unexpectedly ran out of money after a couple of years, he travelled round the country doing various odd jobs (some appear to have been very odd), always expecting to return. He never did, though. I don’t think he really liked school as a young man, though he appears to love it now.

During his schooldays, he wasn’t what I’d call academically inclined. When I met him, he clearly was quite one-sided in his interests. While he reads more and loves reading more than anyone I’ve ever known (including me, which is saying something), he reads only books in which he has an interest. His knowledge of history (and particularly of the two world wars) is extensive and detailed and in fact rather overwhelming; ditto, his knowledge of the British film and television industry and certain aspects of British police procedure. He is fluent in French and speaks it, I am told, with a flawless accent. Historically, if he has been interested in a subject, he mastered it with very little effort. If he was not interested, he didn’t bother even to learn the rudiments.

To excel in school, you have to be willing to study subjects you’re not especially interested in learning about. While he was at Westminster, for example, he seems to have utterly refused to learn anything during the chemistry course he had to take there. I don’t mean that he couldn’t learn it----I mean that he wanted no part of it and simply refused to let any of it in. He did poorly in that subject and why? Chemistry was ‘boring.’ His performance in subjects he enjoyed, such as French and history, were exemplary. But he only wanted to study the things he already knew he liked.

I think the one quality that probably distinguishes the academically inclined from those who are not is the willingness to take an interest in subjects which aren’t initially appealing. (It certainly isn’t superior intelligence). If you’re truly going to get something out of your education, you’ve got to be willing to let in information that you don’t especially want. To do extremely well, you’ve got to want to let it in.

A teacher during my childhood---I know longer know who it was---once made the remark to me that if field of knowledge existed, and if someone existed who was willing to learn it and teach it, there must be something about the subject of interest and that I would probably do well to work out what that something is. It was a good point and helped me slog through a lot of courses that didn’t interest me very much. Throughout my school days (including college and after) I tried to approach the subject I was required to take in this spirit. I was a liberal arts sort of person through and through, but I did try to take an interest in courses outside my field of interest that I had to take to get my degree.

Forcing yourself to feel interested keeps you awake during the lectures you have to sit through and helps you take useful notes. It makes studying for exams and writing papers slightly less unpalatable because you are able to feel that you’re getting something out of it. And in fact, it ensures that you do get something out of it---even if the teaching isn't the best. I decided as an undergraduate that I'd rather try to be interested in boring (to me) lectures in Sociology than expire from boredom at my desk. By keeping my mind on what the teacher was saying (and focusing on taking good notes), I ended up with a tiny inkling of why the professor thought the material was so interesting. I made good grades and people were envious. But my 'secret' was the simple and obvious one of forcing myself to be attentive in class.

Often I’ve found that it was the subjects I liked least when I was an impractical undergraduate that I’ve most often had to apply in my subsequent career. I’m glad, for reasons that I am not going to get into, that I forced myself to learn certain aspects of cell structure and metabolism as an undergraduate. I never dreamed for a moment that I, with my absorbing interest in philosophy, religion, and literature would ever have occasion to apply this information or that at any point in my career it would prove absolutely crucial.

Learning something you didn’t know before is always a good thing. It doesn’t make you more intelligent, but it makes you smarter---more informed about the world, better able to see the connections between point A and point B. I’m a great believer in a liberal arts education because I am a great believer in knowledge for its own sake.

When Nicholas indicated that he wanted to go back to school to do training for his particular field, we discussed this point. “You’ll have to take courses you won’t like,” I warned him. “You’ll have to take math.”

His face fell. “Math? To become a Legal Assistant? But why?”

Why? I honestly don’t know why. I don’t understand why the arguments in favor of well-roundedness apply to the study of a highly specialized course in vocational training. I understand why he has to take subjects such as ‘keyboarding’ and desktop publishing in addition to the required law courses, but algebra? No, I don’t get it either. But I believe in the value of knowledge for its own sake and I believe that educating yourself in any subject helps make you better at everything else

And I’m happy to say that he has put his all into every course he has taken---even the algebra course in which he received his “B.” (He was terribly upset about that; it tooks days for him to get over getting a grade that wasn’t an “A,” no matter how many times I assured him it didn’t it didn’t matter.)

He has approached each course with the attitude that he was going to get as much out of each subject for its own sake as he possibly could, regardless of whether or not he expected to feel interested in it for its own sake.

And he has succeeded. Yay!

Image drawn by Mr Tenniel; painted by Damozel.

Matisse and My Mom

Thu, 18 Aug 2005 11:05:19 GMT

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Chaotic Simplicity Part 2--Matisse and my Mom

After my first meeting with a clerk from the local Quaker meeting, I started thinking about what it means to live a simple life. Can you have simplicity with a lot of colors in it? My favorite painters are Matisse and Kandinsky. I need color, but not much else. Addressed here.

One of my favorite books by the astonishing A.S. Byatt, one of my favorite writers in life, is the set of three short stories called The Matisse Stories. All three stories involve fairly mundane events in the lives of women---the first, for example, is about a middle-aged woman who gets a haircut she loathes and ends up more or less laying the whole shop to waste; and can't we all identify with that?---but at the center of each story is one of Matisse's paintings.

This was a painter who understood color and was unafraid of it. I know nothing about art, and I don't remember the names of specific paintings, but I knew the first time I saw a painting by Matisse that I had discovered someone whose vision of the world matched my ideal of it. That's not well put, but I don't know how else to explain it. He painted 'voluptuous luxury' but that isn't what I see. I barely take in the subjects of his paintings; to me it's the arrangement of blocks of color---the oranges, pinks, greens, and purples, pure and vibrant. I love the orderly arrangements; that the patterns they form happen to resolve into recognizable objects has always seemed to me to be merely a happy accident. It's the colors that I love.

I don't even understand the sort of brain that prefers minimalist color schemes, though some of my nearest and dearest very much do. Those spaces, however elegant, feel empty and sterile to me. Black, white, beige, brown, grey, ecru, white, or any neutral is to me simply a background on which to impose large blocks, whorls, and swirls of color. I love the saturated Matisse tints best, but I won't say that the greyed-down shades of plum, olive, soft teal, and slate blue don't have their own appeal. The director of my department, who loves Italian color, painted her whole office in a rich deep red, not quite rust-colored and not quite blood-colored, but somewhere in between. Like terra cotta to the 10th power. When I get a little tired or tense during departmental meetings, I get stimulation from looking round and absorbing tawny-toned Italian color.

I got my love of vibrant color from my mom. She has always filled her house with color, even during periods when it wasn't at all the style. She painted the walls of my room at home apple-green, and I don't mean the pastel sort (we both loathe watered-down tints), but the sort you see in Charleston or Williamsburg (which is where she got her inspiration). Against that, a vibrant blue rug, indigo or her personal favorite, 'cobalt.' If it sounds awful, I can assure you that she pulled it all together with the curtains and the bedspreads. She choose green because I loved green but her own favorite color schemes center around teals, aquas, cobalts, intense yellows, and a color she calls 'fuschia' and I call magenta. Like me, she collects glass---though hers is fine glass and mine is whatever shines brightest on the shelves of the flea market---and has shelves of it in a magnificent lighted case she refers to as her 'Christmas tree.'

"Someday I want you to have all this," she says to me. Aside from the fact that I never want that day to arrive, I doubt I will ever have the sort of living space that could accommodate these large and lavish pieces. And I don't need them---I have my shelves of flea market glass on the shelves beneath the window sill where they catch the light surprisingly effectively She's passed on to me her love of color and for that I'm more grateful than I can say.

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Chaotic Simplicity

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Image drawn by Mr Tenniel; painted by Damozel.

Belief-O-Matic

Mon, 15 Aug 2005 13:41:08 GMT

Belief-O-Matic!

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If you're not really sure what religion you are, or think you might have got it wrong, I recommend the 'belief-o-matic' at Beliefnet.org. It's quite the little aid to spiritual clarity. Since I am currently exploring whether it would be appropriate for me to join the local Religious Society of Friends (i.e., the Quakers), imagine my relief when the Belief-O-Matic said that my stated beliefs were a 96% match for Liberal Quaker. (They were 100% in line with 'Unitarian Universalist,' but never mind.) I had an 83% score for Taoist, which I 'practiced' to the extent a westener can when I was in college. Interesting, that.

Imagine if it had come up 'Fundamentalist Christian,' 'Wiccan,' or 'Greek Orthodox.' I'd have had to start all over from scratch.

Anyway, it's a fun little device and there's absolutely NO obligation to convert! What if unbeknownst to yourself you're spiritually designed to be an atheist and you just don't realize it? Or suppose you're supposed to be a member of the Church of England and you never find it out? No cake for you!

Image drawn by Mr Tenniel; painted by Damozel.

Flatland Photography

Thu, 11 Aug 2005 03:48:45 GMT

Flatland Photography---A Sampler

I've been going through some of the hundreds of photographs my late husband took. I've written (8-7) at some length about the importance of our photography hobby during our marriage, and it's actually taken me four years to really get myself to sit down and look through them all again.

We were absolute amateurs. We had crap equipment---nondigital though---and almost all of the photographs were taken between 1996 and 1999. Neither of us knew what we were doing in the sense in which someone who is a professional---or an artist----would know. We just pointed our cameras in the direction of the particular color or light we wanted to hang on to and hoped for the best. Our state of mind was acquisitive---we took pictures in the hope of hanging on to an impression.

I've said that taking pictures of whatever presented itself to my attention helped me become much more intensely aware of my world. Putting a frame around things literally helped me get it into perspective during a period when I desperately needed it.

Photographs such as those displayed at Ed Buziak's Artwork + Photography demonstrate that a photographer can also be an artist. Looking at truly beautiful photographs, and reading the artist's commentary, is inspiring and illuminating, but it makes you more aware than ever of the medium's potential and of your own limitations. I would not wish anyone to think that I don't know the difference!

My photographs are not art, they are snapshots---old snapshots that have been scanned into a computer, and crudely edited by a tyro. Nevertheless, I think some of them get across a sense of the light on the day and at the time when they were taken. The point of them for us was to take them---the results were always out of our hands (though the light here sometimes produces unexpectedly dramatic results even for an amateur if the amateur is persistent). Anyway, here they are. I put them together because Don would have enjoyed sharing them.

To see the Flatlands photography gallery, click here.

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Thanatology 101---The Need for an Etiquette of Dying.

Image drawn by Mr Tenniel; painted by Damozel.

Flatland Photography and 'the Transfiguration of the Commonplace'

Sun, 07 Aug 2005 09:57:19 GMT

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Flatland Photography & "The Transfiguration of the Commonplace"

There's a certain quality of light here in North Florida I've never seen anywhere else. In the late afternoon during winter, fall, and spring, it turns a pure transparent gold. Saturated in that light, the colors of ordinary objects and of the natural world emerge as if color had just been invented. In that certain slant of light, even the peeling paint on an old abandoned building seems portentous, as if it is just on the point of some mysterious transformation. Everything--a quiet family beach, the the lacy woodwork of an old-style Florida house, a tin roof shining in the afternoon sun, an old-fashioned commercial building in a town you may never have heard of, or the peeling paint of a disused building, seems to glow with significance. Suffused in that mysterious radiance, everything looks evocative and valuable.

But even the occasional grey winter's day or a stormy afternoon has a certain muted beauty. Objects merge in and emerge from the mist. That light is silver rather than gold; in it colors are greyed down, subdued. It's a secretive, subtle ambiance. It gives everything a strange, bygone feeling, like an old daguerreotype.

During the period between 1996 and 2000, my late husband Don and I took hundreds of photographs as we chased the North Florida sun from town to town. Places we visited in search of photo ops included (but were definitely not limited to): Fernandina Beach and Amelia Island, Jacksonville, Green Cove Springs, Crescent Beach, St. Augustine and St. Augustine Beach, Keystone, Orange Springs, Hastings, Melrose, Micanopy, Alachua, MacIntosh, Gainesville, Ocala, Williston, Lake Butler, Lake City, High Springs, Liveoak, Waldo, Hawthorne, Dunnellon, Romeo, Florahome, Lawtey, Starke, Archer, Trenton, Cedar Key, Cedar Island, Keaton Beach, Yankeetown, Inglis, Fort Island Gulf Beach, Horseshoe Beach, Salt Creek, Crystal River, Chiefland, Perry, and Homosassa Springs.

We were entranced during that certain period with the fall of the light on ordinary objects.

If there was a theme to our photographs, it was (to borrow a line from Muriel Spark) ‘the transfiguration of the commonplace.’

Photography, even---or especially--- amateur photography, makes you pay more attention to how the light falls. Photographs, even ones as crude as these were, help you to remember how it looked as it fell. Photography makes you pay attention to how the way it falls changes the colors of things. It makes you realize that there is a whole universe of rainbows inherent in an old tin roof that catches the light at just the right angle and that color---and all of reality---is about how the light catches it. The same scenes and the same towns look completely different in the uncompromising perpendicular white light of noon, under the opalescent light of early morning, and under those long slanting yellow rays at the end of the day. The sky looks different too. It’s the same objects in the same position in the same small towns---but the light changes how they make you feel about them.

Don and I weren't fussy about our subjects----we photographed anything that seemed to be giving back the light or the color in a way that called attention to itself. Water shining on marsh grass, the sun reflecting off the tin doors of an old warehouse or the tin roof of a house deep in the woods, an orange tree, a lifeguard shining in the afternoon sun, on a small family beach on the northwest coast, a display of ceramic fish in the window of a shell shop, the ocean at dawn, a brightly painted hamburger stand, a baby alligator among the leaves, the wooden ramp leading across the water into the woods...all of it was fair game.

We took the pictures because we'd seen those things and we wanted to remember seeing them. Memory isn't sufficient---a white church against a blue sky; so what? Our photographs, however crude, reminded us that the front of the church literally blazed with the reflected light and that the blue sky was really almost indigo it was so deeply and densely blue.

They reminded us that the grass outside an old abandoned house was so saturated with the sunlight pouring out of the west that it had literally turned yellow and that the in the late afternoon before sunset, the glass towers along the Jacksonville landing first turn a blindingly brilliant silver and then a very soft luminous gold. They reminded us that when the sun filters through the liveoak trees or onto the leaves of a palm tree, it's reflected in each leaf as if each were a mirror, so that at certain times of the day the whole landscape glitters. They reminded us that on the west coast at sunset and on the east coast at dawn, the rocks along the shores look as if they'd been painted yellow. They reminded us that the ocean at dawn at St. Augustine Beach is really midnight blue, streaked with gold, and that even ordinary things give back the Florida sun in extraordinary ways.

Whenever I took a photograph, I took it saying to myself, 'Get it now before it's all gone.' The light goes out of things very quickly here. If you don’t catch it when it’s there, you don’t catch it.

Even the way the light falls doesn’t grab everyone the same way. 'It's an old warehouse,' said one of my friends, glancing at one of our photos. 'So what?'

Maybe the photographs just aren't very good. Maybe they don't get across what I mean about the light here. I'm still really glad that I have them and that I had the experience of getting them. It was like grabbing back a tiny bit of time in the moment it was passing.

Even if the photographs don't speak to anyone but me, the years I spent trying to capture an aspect of reality I’d never paid attention to have---as previously noted---fundamentally changed how I experience the world. While riding with Don through a small town in the Panhandle (outside my usual range), Don said, “Look! Look at the pattern the palm shadows make on the front of the buildings. And look at the way the palm leaves catch the light and how the sunset is reflected in the windows of the hotel up ahead. I wish I had my camera.” We stopped the car to watch the sunset reflected in the hotel windows. ‘Next time we’re here, I want to get a picture of that,’ Don said.

Next time didn’t ever arrive for him; an aneurysm a couple of years later carried him off. That was several years ago; I’ve since remarried and done what you do when life doesn’t offer any other choice: moved on, turned into someone else with a completely different name. Now I have a trunk filled with photographs that we took while we were rambling around the neighboring counties. Most of them aren’t very good. Furthermore, neither one of us is in a single one of them.

It’s an odd thing though. The family photos we took---and there are quite a lot of them---have that odd flat look that old photographs invariably take on. I’m glad to have them, but they are just the reflections of the way that our life together was the same as every other couple’s. You don’t photograph the anger, tears, and anguish that life hands you, after all. They are just pictures like everyone else’s.

The photographs he took---that we took together--- are a different matter. They bring back much more hard-to-articulate aspects of our marriage----the pursuit of a shared interest and shared perceptions. They also prompt my memory to regenerate the thing that fades faster than anything else: light, color, the way the world looked on a day back when the future---this future---was still unimaginable. Though some of the photographs during periods of maximum turmoil, what I remember is the peace and enjoyment we both derived from getting in the car and driving to some little Florida town I’d never even heard of till then to look at the light.

And I remember the light---and the color.

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Image drawn by Mr Tenniel; painted by Damozel.

The False Nostalgia Syndrome

Tue, 02 Aug 2005 21:09:14 GMT

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The False Nostalgia Syndrome

It’s not déjà vu. Nor is it a ‘remembrance of things past’---or at least not any part of my past.

I think it must be part of ordinary human experience, since most people I’ve asked about it say that they’ve experienced it or something similar. People I know, like my friend Santee, who believe in past lives---a point on which I simply have no opinion---can easily explain it as the remembrance of things past in a past life.

The feeling is powerful, sometimes (depending on surrounding circumstances) well-nigh overwhelming. It brings up thoughts that certainly used to be nearer the surface but that have (thankfully for my ability to concentrate on my work or to get anything done) over the years become submerged under the mundane, practical emotions of an adult trying to live an adult sort of life. It sweeps all that away, at least temporarily. I feel uneasy, excited, and above all, expectant. I feel on the verge of losing my detachment and of developing desire (though for what or whom I can’t say).

The feeling is most reliably evoked by that ‘ certain slant of light’ at a certain time of the day during certain seasons of the year. It’s brought on by that golden late afternoon light that down here in the flatlands reaches its peak of clarity and richness between November and late February. It’s also very reliably brought on by certain music. It’s very reliably induced, for example, by the music of Jethro Tull----not ‘Aqualung’ or the songs like ‘Locomotive Breath’ where the band is rocking out but the much stranger tunes from ‘Songs from the Wood’ or ‘Heavy Horses’ with their emphasis on ancient English legends and musical themes (not that I know anything about either, but that’s how they strike me) and on nature.

When I hear them I’m overcome with that much under-appreciated state of mind, yearning. But for what? Perhaps just for experiences that I never had? During my emotional adolescence (which lasted well into my late twenties) I was constantly battling my feverish emotions, but even marriage, divorce, and a series of (in retrospect) rather absurd affairs didn’t create the welter of emotions I feel when I hear “New Day Yesterday” (for example), “ Moths,” or “Velvet Green.” Though I was emotional in my younger days, I was never what you’d call romantic. And no one I’ve loved has loved those songs. I am not harking back to some long vanished love, trust me. I feel desire. But for what?

So when I’m riding through that particular late afternoon sunlight that’s like gold dust in the air listening to “New Day Yesterday” with tears rolling down my face, what am I crying for? It’s not a case of “It is Margaret you mourn for”---not at all. The tears aren’t tears of sadness; they are tears of impatience and of longing. It’s as if there’s something that I had, lost, and am waiting to have again. It’s as if I am reliving something (that never happened) in the expectation of having it again. I feel as if I’m standing on the brink of something joyful that I’ve had and expect to have again.

If I were a man, I expect I’d deal with this feeling by divorcing my spouse, buying a red sports car, and purchasing a 25 year old in a hopeless attempt to find what’s been lost (that I’ve never had) in sex and love (or ‘love’). But I am quite happily married and have in any case had ample experience in my life with both sex and love to know that both are comparatively workaday matters. I am ‘remembering’ something more, of which sex and love are at best mere precursors.

My friend Elinor says that the longing is for a connection to eternity, to God, to what you get (according to her) when you ‘remember who you really are and return to being your true self’ (her words) at death. “You don’t have to wait till then,” she said to me earnestly, “the kingdom of Heaven is upon you now. Think about what that means.” I think she lives a good part of her life feeling that sense of connection and joy. I’ve never read that Shirley McClain book, Dancing in the Light, and I never expect to, but the title reminds me of Elinor, whose whole life has been one way or another about her religion and who certainly seems to feel a kind of constant joy I can’t really understand or relate to.

"Perhaps you've a migraine coming on," said my husband worriedly, when I tried to describe to him what I was feeling. He didn't think it sounded like something I ought to want to have. "You're mad and this is just a further manifestation," said my friend Rumcove, when I spoke to him about it. "Take some prozac."

I don’t think that’s what these feelings are. Maybe they are just flashbacks to what I wanted---and naturally, didn’t get--- back at the time in my life when I was most deeply in love with the person to whom I felt the deepest psychic connection. Everyone has one love like that one. It has to happen when you’re fairly young and love still seems like some sort of mysterious transfiguring agency capable of working miracles. In those days, I could still share my deepest thoughts with the object of my affection. I could write poetry, and three page emails, without a trace of embarrassment. In our hundreds of ours of conversation, we each poured so much of ourselves into the other that it really did seem as if something was actually happening to us. It was the sort of feeling that makes you understand all the nonsense about two becoming one and the rest of it.

It didn’t happen of course. There’s a line from a song (not a song by Jethro Tull, but by the Moody Blues) that’s on point: “For one short time for awhile you I were joined to eternity---but now we’re split in two back to me and you like the rain rising from the sea.’ That’s exactly how it felt when we started to fall apart. We certainly never achieved any shared transcendence, though we talked about it and thought about it and I think there was a time when we both felt that we might be on the brink of it.

That love affair is long over. That longed-for moment of clarity or whatever it is (I don’t know what it is) didn’t happen then and couldn’t happen now if I were reunited with that particular man (and neither of us would wish it). At the same time, the sense of merging with another soul was as close as I ever came to the feeling that I now only dimly imagine and wish to ‘relive.’

I call it false nostalgia because I don’t know what else to call it. But it’s nostalgia for something I must have imagined because it certainly never happened. It is painful and exquisite---i.e., exquisitely painful. At the same time, it is one of the types of experience that gives me hope. Hope for what? I don’t know. Perhaps some sort of emotional reawakening or revivification---some sort of more fully realized life. But in this life, not some theoretical or actual next one.

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Image drawn by Mr Tenniel; painted by Damozel.

The Flatland Tarot

Tue, 19 Jul 2005 21:37:54 GMT

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The Flatland Tarot---A Reading.

My dear friend, Elinor Spancel (not her real name...), is a Tarot reader---a professional. Naturally, I don’t believe she can really foretell the future, but at the same time, she is always right. For this reason, I sometimes consult her in times of severe doubt and stress.

She’s a skillful reader and a conscientious one and therefore doesn’t pretend to foretell the future. She tells you what you should do in the present. She tells you how to avoid the outcomes you don’t want and increase your chances of obtaining the ones you do. And isn’t that what we all really want from an augury, from prayer, or even from our therapists? And it's what you never get.

Elinor is very clear that she can't foretell the future. She says it's impossible to describe the characteristics of an entity that doesn't exist. Elinor told me back in college, when she first got interested in divination, that the only real use of an oracle is to tell you what you should be doing now, based on the factors---both internal and external----that are already in place. If you look at those carefully, you won't know what is going to happen, but you might get a sense of the direction in which events are tending and what you need to do in response. And for this reason, she's not like any other fortuneteller I've ever heard of.

1. Her own system.

According to Elinor, the oracle best designed for that purpose is I Ching, the Book of Changes, which has been in use for thousands of years. She studied I Ching in College, which is how she got really interested in divination. She wrote several papers on it, I think. I am pretty sure at the time she didn’t see herself then making a living out of divination----that was later, when she realized that there wasn’t much of a market for former philosophy majors or indeed for actual philosophers.

She didn’t want to teach or write critical studies of what others had said; she wanted to write and talk about what she thought. Back in those days, she wanted to talk all the time about what was fundamental or ultimate (or fundamental and ultimate) , whereas the rest of us wanted to talk about what was immediate and personal. We thought she was very weird. I don’t know what she thought of us. I don’t think she thought about us at all much.

She switched from I Ching to a version---her own version---of the Tarot pretty late in the day. She said that the Tarot was more adaptable to her particular religious/philosophical stance. After spending a lot of time researching the Tarot, she pretty much designed her own deck and her own system, which according to her incorporates elements of gnostic Christianity. Her twin brother, an artist, did the actual execution. They’re larger than ordinary-sized cards and the designs are very elaborate, but she has never allowed me to handle them except during an actual reading, so I can’t tell you much about them.

She calls some of them by different names, too---for example, one of them that I know is different is the card that in most Tarot decks is called ‘The Moon.’ She calls it ‘The Ghosts.’ The card itself is quite terrifying. It shows a sort of wooded area on the edge of a field in the winter. The trees are all bare and covered with snow. It’s night time and there is a full moon with a ring around it. A person in a cloak and carrying a staff—you can’t tell if it’s a man or woman--- is hurrying along the edge of the field. The first time I saw it I didn’t take in why it made me so uneasy or what it had to do with the moon or with ghosts. The second time I saw that a couple of trees near the edge of the field had knots, whorls, and stumps on them, that looked like faces and branches that stuck out like arms. Further back in the woods is a white dog or dog-like creature peering out between the trees, also watching the person pass--you wouldn’t see it if you didn’t look for it. Maybe it was just intended for a dog, but there was something about the way its tail hung and the expression in its eyes that made it seem like something more---or less. The last thing I noticed were the footprints---very faint footprints, running alongside and slightly behind the deeper prints of the person who was walking in the field. I always wanted to ask Elinor how much of that picture was based on instructions she’d given Cam and how much on his interpretation, but she’s quite touchy about those cards and usually won’t answer questions about them.

I asked Elinor to explain that card, and she said it signified someone in a state of anxiety and distraction caused by ‘unfinished business’ with other people and harboring unacknowledged or unarticulated fears---“stalked by dread.” When ‘The Ghost’ turned up in my reading the first time a few years ago, she said that I was haunting myself. She told me I needed to come to terms with sadness and anger over the sudden death of someone close to me. She gave me a meditation to do, which didn’t help at all, and the phone number of a ‘bereavement counselor,’ which did.

2. A fairly lucrative occupation.

Elinor does business out of her house. It’s a house that belonged to her grandmother. It’s in what used to be in the wealthy and elegant part of her town, near what used to be the city center, but is now the place you go when you want to feel you’re getting out of the mainstream. Her part of town is now the colorful, unconventional, counterculture, indie part of town. It’s officially known as “The Historic District,” though as Elinor points out, nothing has ever actually happened there except for the passing of years.

Her house is on a street where most of the houses these days are used for strictly commercial purposes. It’s a huge, shambling, aubergine-painted Vicwardian structure. It stands out like a badly bruised thumb between a bookstore, painted an elegant cream color with the woodwork picked out in paintbox tints and a café, painted a muted silvery blue with lacy white iron grilles sticking out here and there. Elinor gets a commission from the bookstore for any client she sends their way to purchase from their stock of mystical and philosophical works; she has a similar arrangement with the gift shop across the street that sells gemstones, incense, and various aids to meditation. In her way, she’s a very good businesswoman. I imagine that it’s a fairly lucrative occupation. I don't know though, really---apparently her grandmother left behind a fair amount of money; I don't think she has to work at all.

Though she doesn’t just read for anyone at any time---she doesn’t take appointments. You normally have to have an appointment. When I called to set something up, she said immediately, “It’s too soon, not even three months.”

“Come on, I’ve really been feeling ill,” I said. “Something’s wrong with me. I feel sick all the time.”

“See a doctor,” she said sharply. “If you’re sick, the cards won’t tell which part of it is physical and which part is just down to all the stress you said you were having last time. As far as they’re concerned, it’s all one thing. If you’re sick, you need to find out as much as you can about why before you come here asking.”

“It’s not that,” I said. “I mean, I’m not going to ask about why; I just want to know what I can do about all the stress. Whether it’s physical or not, I need to figure out what to do about that. Come on, it’s almost three months. And you didn’t tell me then I’d feel this bad. ‘Some anxiety about the future,’ you said. “You didn’t tell me I’d actually end up getting sick from it.”

“Well, that was really up to you, wasn’t it?” she said. “You should know by now that you can’t just sit back and let stress ride you. It just confuses everything. See a doctor and then we’ll talk about where you go from there.” But then she relented. As I say, she’s a good woman of businesswoman. “You know if I see you today, I’ll have to charge you extra,” she said. “You ought to wait a week. $50 if you wait; $75 if you don’t. My advice would be to wait.”

She charges people more if they come to see her often. I guess she can afford to. The idea is that charging more discourages what she calls ‘frivolous consultations.’ She says some people would be at her door every other day if she didn’t. “You need to let yourself undergo it,” I heard her say to a client once on the phone. “You knew it would happen; and you explained to me exactly how you would handle it when it did. It’s too soon to be trying to look into the next stage. Give it a month to finish happening and we’ll talk then about what you need to do next.”

“I really think we should wait,” she said, when I said, trying very hard not to sound grudging or reluctant, that I’d pay the $75.

3. A priestess of sorts.

She met me at the door. She’s a very tall pale woman with very long blond hair, long enough for her to sit on if she felt so inclined. She says it doesn’t suit her at her age, but that it helps her look the part. On that day, she’d wrapped a bandanna around it and was wearing one of those outfits she buys from some store over the internet; she won’t tell me what it’s called. Her things are beautiful in their way, intricate but also rather odd, not quite costumes but close. The colors remind me of medieval tapestries: wine red, midnight blue, hunter’s green, old gold, brown, and grey with a very silvery sheen. They normally involve more embroidery, satin. velvet or crocheted lace insets, scalloped hemlines, or other embellishments than you usually see except at Renaissance fairs. Still, I wouldn’t mind dressing like that myself sometimes.

The room where she meets clients isn’t at all what you might expect. The walls are completely bare; there isn’t an ornament in sight. There’s a lavish but faded Oriental rug, a painted desk with an equally faded goldleaf design, an old gilt chair that has gone green over time, and a fairly comfortable armchair. The windows look out on the patchy lawn in back of the house. She asked me if I was sure I wanted to go forward, and when I said I was, she took the $75 off me immediately, as always, and put it in a little locked drawer in her desk.

Elinor began the reading by praying silently to herself. She always begins by praying. She doesn’t ask me or anyone else to join her. She calls herself a ‘ Gnostic Christian’ seer, though she was more or less asked to leave the last two churches she tried to attend. She was impervious to Biblical quotations intended to prove that divination or consulting signs is the Devil’s work. “I’m not a witch, I’m a priestess of sorts, and in any case Christ Himself was accused of sorcery,” she says. “People don’t understand what I do at all if they think I’m a witch of some sort. Anyway, witchcraft was an invention of the medieaval church to stamp out gnosticism in southern France,” she told me once.

She flipped through the desk till she found the Dagger Queen, ‘the widow’s card,’ which is the card she uses to signify me. After I remarried I asked her to change it, but she wouldn’t. “The Dagger Queen is a woman who has suffered a loss,” she said in her matter of fact way. “She’s someone with a specific sort of experience in her past. Getting remarried doesn’t change who you’ve become as a result of the things that have already happened.”

She slapped the card down on the table face-up. “Look into the candle flame. Meditate on your question,” she said in that same flat, matter of fact, mechanical tone, as if she were a nurse asking you to take off your clothes and put on the hospital gown. I know the drill by now, but she always instructs me regardless. “Be sure that you articulate your question as clearly as you can---try to . Mentally state the outcome that you want or fear and the result you are seeking. If you have a particular expectation, acknowledge it. Ask if events are currently pointing in that direction. Ask what you can do or change to bring it about. Pray that you’ll have the insight to see the response and the courage to face the truth. It’s important to do all of this before we start. If you’re vague about what you’re asking, you won’t understand the answer when you get it. Tell me when you’re ready to begin, but don’t tell me your question unless I ask.”

After about three minutes, during which I began to feel slightly cross-eyed from concentration, she says, “Are you ready?” When I said, “Yes,” she began to lay out the cards.

4. Nevertheless, it moves.

And even though there’s a part of me that doesn’t quite believe in what she says the cards have the ability to show me, my pulses as always pounded a little as I watch. She set them out in formation I think she devised for herself: ‘‘The Lathe,” I think she calls it, though I’m not sure. It involves 14 cards laid out in pairs, with one card crossing another. Each pairing represents a different aspect of the situation.

She studied them for a couple of minutes without saying anything. Then she said to me, “What have you been doing since I saw you?”

“Nothing,” I said. “That’s the problem.”

She said, “You’d better believe it is. Look at these cards. Do something else.”

I said, “What do you mean? Come on, don’t be so oracular. Be specific.”

Elinor shook her head. “That’s the answer and it is very specific. You need to find something to do. You’re stuck. This is a big change from last time, when it looked as if you had too much going on. Now for some reason you’ve ground to a halt. No wonder you’re sick. Look at these cards. You’re standing in your own way at every turn. I’ve never seen such a set of metaphors for spiritual and mental constipation. Look here: here’s the Ghosts again, right here at the first turn at the basis of the entire problem. What’s that doing back in the picture? And you’ve got that influence crossing and countering the influence of the Staves Angel. No wonder you feel stressed. You can’t get started on anything new if you’re dealing with all of this unacknowledged bullshit. What in the world is going on here? Are you having a lot of panic attacks?”

She looked at me, but I didn’t answer. One of the rules she has for herself is that she can’t demand information during a reading. After a minute she said, “Okay, we’ll take the panic attacks as read. Look at the cards at the Third and Fourth turnings, Expectations and External factors. You’ve got the Seven Grails countering the Shining Child, so you’re so afraid there’s something wrong with your health that you probably can’t bring yourself to do anything about it.—you’re expecting the worst. Your external factors are the Winged Horse countered by the Eight Daggers. The problem’s not in the environment---there are plenty of indications that you could move forward and be productive if you wanted to, but you’re not. I wonder why.”

“What’s going to happen?” I asked her.

“Nothing!” she said emphatically. “At the Sixth and Seventh Turnings, the Trend and the Probable Outcome, you’re still in a holding pattern. Here at the 6th you’ve got the Lector countering the Three Staves, so that’s your creative drive being stifled by some sort of fear of censure or of authority; here at the Seventh, you’ve got the Magus and the Five Staves. Every single pair shows your energy being blocked and all of the blockages are coming from inside you, not outside you. And right here at the Fifth I can see from the pairing of the Dagger Guardian and the Staves Guardian what the cause is: anger and anxiety locked together. They’re change cards, both of them, but nothing’s going to change if the Guardians aren’t moving forward. You’ve got to prise them apart and put them back on the path. What are you so afraid of?”

“I don’t know,” I said. “I always am nowadays. I feel like everything’s just out of control.”

She didn’t seem to be listening to me; she was looking at the cards again. “I’m seeing equal parts of anger and fear,” she said. “What’s that about? Never mind; don’t answer---I don’t need to know. The only thing I can really tell you right now is this: you’ve got to find some sort of way to unblock all that energy.” She opened the drawer of her desk. I’ll give you your money back; I haven’t really told you anything,” she said, “and I really don’t think I’m going to have any more to add. Till you're out of your holding pattern, nothing I say would be a bit of use. Anyway, I don't have even an inkling of what happens next. It looks like you're trying to make sure that nothing is going to."

“Can’t you tell me what to do?” I asked. “You say I need to do something---I don’t even understand what you mean. Such as what? For what purpose?”

Elinor shrugged. “I don’t know what and I don’t know if it matters,” she said, unlocking the drawer and taking out the money I’d given her. “Listen, if you feel you’re not in control of your life, you’re right. You can’t control it, but you can be in it, digging in your oar, and at least affecting the direction. You can’t control it, but you can affect it. If you do anything at all, that’s probably enough to get you moving forward again. Well, the alternative is for you to hold still and let yourself be moved along, and that would probably be okay too. The problem is that you’re trying not to move at all. That isn’t going to work, Damozel.” She gathered up her cards. “Stay for lunch,” she said. “Cam’s cooking. He’d like to see you. He said so before you got here.”

5. The Gospel of Thomas.

The cooking smells had been drifting into the ‘consultation room” ever since I’d arrived, so I knew it was going to be Cam’s vegetable soup. It’s amazing stuff---I mean, vegetables, yes, but with a very sharp, tangy flavor. Elinor told me that he puts half a lemon in, so that’s part of it. But I think there are other things, like cilantro and red pepper. Anyway, it’s the best vegetable soup I’ve ever had anywhere.

On that day, they had a loaf of homemade bread from the bakery down the street to eat with it. Cam said, “Hello, Duh-duh-duh,” then grinned, waved his arm, and gave up. When he was a kid, his mother refused to let him have speech therapy because she was afraid it would affect the part of his brain that the paintings come out of. I guess Cam must have believed this too, because he has never tried to do anything about the stutter. He’s a very good-looking man, in a way, though in the presence of outsiders such as myself he wears a fixed grin that makes him look slightly deranged---this is Elinor’s comment, not mine--- and his long ponytail, a mixture of grey and light brown, is more literally like a pony’s tail than you usually see. But though I know he’s shy and tends to steer clear of other people, he’s always been convivial enough when we’ve met. He doesn’t speak but he seems to listen more attentively than most people when I speak and he certainly laughs more at my jokes than most people.

The soup was as delicious as ever. Over lunch, we didn’t of course talk about my issues, but about the various things you talk about over lunch with friends----local events, mutual acquaintances and their doings, politics (though we just skimmed the surface), Elinor’s vacation in Clearwater, books we’d read, Cam’s paintings. I don’t think either of us said a word the whole time about my reading or about Elinor’s conclusions. And there were several thicknesses of old-fashioned solid oak door and of plaster wall between the consultation room and the kitchen, where Cam was working.

But at the end of the meal, when I was ready to go, he indicated to me by various signs that he wanted me to wait for a minute. While I watched, he grabbed a napkin and started scribbling on it with a pen. When he was done, and before I had a chance to read it, he gave me a friendly look, and another wave, and immediately plunged through the backdoor. I heard him a few seconds later going up the stairs to his studio.

I unfolded the napkin. Written in minute, beautiful uncial letters were some lines from the Gospel of Thomas that Elinor had once inscribed on a birthday card she’d sent to me. “If you bring forth what is within you, what is within you will save you. If you do not bring forth what is within you, what is within you will destroy you.”

“Well, yes,” said Elinor, who’d stopped collecting the dishes to read over my shoulder. “Yes, that’s actually exactly what I was trying to say back there.”

I tried to give her back the money she’d returned to me. When she wouldn’t take it, I walked straight down to the Episcopal Church and put it in their mission box. Like Elinor was saying, any step in any direction gets you heading somewhere and to that extent is a step in the right direction.

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