4/26/2012 Penguin Day

We got our first April Showers, finally. I think we still need some more. It’s been cooler, which means pulling out the wool and quilted clothing again. I keep thinking how nice a fire in the wood-stove would feel, but haven’t the ambition to keep it up.

My bleeding hearts are blooming! It’s amazing how much that excites me. I’ve heard from friends that the lilacs are starting to bloom, which sounds early to me. In the flush of excitement about spring coming, I got some lettuce to put in, then forgot to water them, and half of them died. Kat’s put the rest in, while planting the hyacinth that we got potted to cheer us up this year. The violets are still blooming and there are a lot of dandelions in with them, which is very colorful, and so is the quince. There are even still forsythia.

Oh, I need to make a correction from last week- my weight isn’t 165 it’s 265. Apparently my mind is just not able to wrap itself around that huge a number. I also tend to SAY 165 when I mean 265. It’s depressing. But I do intend to be honest about it. On a far more pleasant note, Jeanne has offered to share some paper-whites with me when she divides them! And my friend Jess is getting married! They sent a mixed envelope of flower seeds they’d collected in the invitation. I figure I’ll plant them around my existing plants, and whatever I don’t recognize must be from that collection.

Saturday we took a huge load of stuff that’s been accumulating in the back hall to the recycling center, to discover that they’ve closed the exchange table. Apparently there were a few jerks who were rude and pushy, and unpleasant enough that rather than just banning those individuals from the recycling center, they closed the area down. I was disturbed. There are perfectly good toys and books, housewares and tools that other people might want, and aren’t ready for the dumpster. How rude does someone have to be before they deny that opportunity for the rest of us?

On Sunday we drove up to Plymouth College (about two hours north) where their medieval group was having a “Renn Faire”. We did pretty well, although the attendees pretty much went away when it started to rain. Thank goodness, the merchants were inside, so we stayed dry. We also could drive right up to the door so packing in and out was fairly easy. Sadly, there wasn’t much by way of food- Kat tried one of the Turkey legs they were selling and found it greasy enough that it upset her stomach. The table across from us was selling leatherwork, and they had some “ring pouches”, very like what I’ve made, and Willow wanted one in leather. We did well enough that she was able to buy one. We understand how it works well enough to know that we’d probably have spent almost as much on materials to make one ourselves. This one also has a buckle strap to hang it on your belt- another selling point, and a drawstring top, which Willow had planned to put into hers. I bought a few more glovers needles.

Another lovely aspect of the day was that Anjoli/Elizabeth Becker lives up near there, and she came by to talk to me, which was both flattering and fun. Since there was no opportunity for me to speak, I’d offered my portrait making and soothsaying. The only portrait was one someone one in the Pirate Game, but lots of people got their fortunes told. I developed a new system on the spot to use the more period cards I’d brought, and to create more adaptability time-wise, because I was doing it for $1 per minute. A standard 15 minute reading would be 15 dollars, but some people had three dollars, or four, or one, and wanted to have just that much of a reading. I probably went over most of the time, but still made nearly a hundred dollars over the five hours, so that’s better than I’d have done with the portraits. We’d been invited to it by the organizer who’d gone down to Birka and picked out her favorite merchants to invite.

Last night I got a call from Phinn, who organized the Wiltshire Fair at the animal shelter we went to last June or July. The shelter closed, but he’s been asked to do a fair by the folks at Waterville Valley up in NH in August. This will make scheduling the girls weekend with their friends at the lake a bit harder, as they’ve decided that they prefer going before labor day when it’s warmer, but it’s nice to be invited to come make money. Signing up for events is not my best skill. I missed getting into the NH Renn Faire this year, and also missed the opportunity to speak at (and get a discount for) the Dowsers convention. I’ve just squeaked into the Beltaine in CT that we’ve been doing for years.   There is such a huge variation in how soon you have to check with the organizers. Willow is on the “Wait List” for Anime next, and I don’t know how she deals with the high stress competition for the limited tables in the artists’ alleys. For some of the cons she sells at, the tables are gone within five minutes of them posting the notice, so they put up a “we’ll be putting it up soon” warning, and the prospective artists have to hang on the website waiting to see it. She missed one last year by finishing typing a sentence, and then applying. There’s a great deal of frustration, but Willow seems to deal with it, and figures it just goes with the territory.

Kat has developed a new system to remind her to do the many things she tries to do, and so far it seems to be working for her. I like it because she’s been doing housework every day. I have a theory that if Willow, Kat, John and I each did two hours a day on housekeeping, the place would look pretty good, and I could spend more time on my art. Sadly, the reason Willow can’t work is because we can’t predict when she’s going to have energy. This last week has been one of her “bad” weeks. I overheard her telling Kat at breakfast the other day that “getting dressed should be preparation, it shouldn’t be the goal for the day”. I know that sometimes it just seems to be more than the energy expenditure is worth to eat. Given that, I can’t really ask her to clean the house. I’m sure everyone else who knows friends with Fibromialgia, Chronic Fatigue, MS, Lupus and the many other debilitating energy robbing diseases understands. There’s a meme going around with things people say to those with a chronic illness, like “it’s all in your head, stop being lazy, you just want attention, or But you LOOK so good”. Actually, it seems that the worse Willow looks, the better she feels. I find it really irritating that people think they can tell by looking how much pain someone’s in. I suppose it’s part of some jobs. Sigh. At least the medical profession has now gotten into the habit of ASKING people (“on a scale of 1 to 10…”).

Thinking about how much I would really like to get done and am not getting to, I decided to stop playing on Gaia, a website the kids showed me where you can play games, dress up your avatar (it’s like playing with paper dolls), and there’s a virtual fish tank I enjoyed. But I realized that it’s not getting anything done. I think I liked it because you’d get little “virtual rewards” for completing activities, and that creates a sense of accomplishment. I like a sense of accomplishment, and it’s really hard to feel that from washing dishes, doing laundry or many of the other things I have to do. I was able to deal with the feelings that I was wasting previously invested time by turning the “virtual items” I’d collected over to the girls, but I’m still a bit bothered by not “feeding” my “virtual fish” every day, because “their health will go down”. They may be programs in a computer, but it still preys on my mind a bit.

My LIFE seems virtual these days. What the kids and I talk about is things we’ve heard on the internet- my friends were having nostalgia-gasms about pictures of Drive in movie speakers and metal ice trays. There were WAY too many jokes linking Dick Clark’s death with the 2012 end of the Mayan Calendar (Mike Wallace doesn’t seem to have generated any memes.) Megan is sending us notices of where they are on the Grand Canal so we can follow their progress down to London by looking up the name of the town on Google Maps. It’s too easy to get sucked into looking at other people’s photo collections- like Eleanor and Ekke’s pictures of their homestead (with goats, horses, chickens, cats, and a LOT of snow, up in Vermont. The girls are doing an art site called     and I’m trying to resist a site called Pinterest that has collections of images, from pantries to bento boxes. I’ve learned how to customize sharing on facebook, and am wondering if I should also give up posting my holiday collection each day. I like to think of it as sharing reasons for people to celebrate. People don’t look on the bright side enough- in my opinion. I do like holidays- especially those associated with food and folklore.

I heard on Wait, wait, don’t tell me, that Youtube was originally conceived as a dating site (but apparently people were more interested in footage of cute kittens and babies than hot potential dates). Aside from Lol-cats and other memes, people share directions to articles and music. This week I got Hallelujah and We are young, stuck in my head from that. On the other hand, my favorite thing this week was an artist who created an inflatable replica of Stonehenge for the upcoming Olympics. It’s a like a bouncy castle- you can bounce off the stones and between them, what an incredible idea!

Of course, another incredible idea from the internet which we HAVE to try is hamburgers that have woven bacon over the top and hot dogs stuck in them so they look like turtles. Fun plus delicious I’m betting. (That and the “dead rat” pizza.) I’m not sure whether we’ll get to them before the end of the month. Frankly, we are counting down until the end of the no-wheat, no-dairy trial, and looking forward to the “eat a great deal of them and see if there’s a reaction” part of the test. We did break down and make a chocolate gluten/wheat free cake from a box I picked up for the Passover dinner I made Steve and didn’t get around to using. Willow discovered that not only was the potato-flour cake not bad, but was even better with raspberry jam. Speaking of “not bad”, the other night when I asked Kat what she thought of one of my no-wheat offerings, and she replied “I’m not barfing.” This damning with faint praise struck me as so funny that I laughed for nearly ten minutes, so loud that Willow came downstairs to find out what was going on.

While making suppers and other work in the kitchen this week I watched old episodes of The Rat Patrol, one of the many World War II TV shows from the sixties. I remember first seeing it when I went in to say goodnight to Dad, getting interested and starting to follow it myself, later ending up watching Garrison’s GorillasCombat,  12 O’clock High, and of course, Hogan’s Heros. What fun. I’d forgotten they actually used to make half hour adventure shows. Many of the stories seemed very bald and un-developed because of having to fit the adventure into only twenty-some minutes, and poor Eric Braden (who played the German captain), who seems to spend all his time looking pained when the rat patrol beats him again.

I also got around to watching the netflix I’d sent for: 2012 Doomsday and 2012 Prophesies from the Heart in an attempt to figure out what the brough-ha is about. The Doomsday one was just a low budget adventure, although it did remind me that while it may not be so in my circle of friends, the majority of people in the US are Christians, to some extent or other. The other was more of a New Age lecture by Drunvalo Melchizedek, explaining how this end of cycle is an opportunity for spiritual growth. I’m all for spiritual growth, but I worry about bad science.

I finished up the Witchcraft, Magic and Religion textbook. (Now my head is all full of anthropology or studying how culture works.) I went on to finish … a Time to Die: How American Hospitals Shape the End of Life. (When I got tired of non-fiction, I’d read a story or two from the vampire stories in By Blood We Live. It’s a good collection.) But I’ll admit that I spent most of the week wrapped up in the anthropology of modern hospital death book.

I ran really long writing this, so I’m splitting it in two.  Just to let you know- the rest of this letter is my musings about the things I read about in the book- so if you don’t want to think about death in a modern hospital- see you next week! You’ve been warned. Don’t bother opening Part 2. I did write it. I did think about it. I think it’s worth reading and thinking about- but perhaps not for everyone. Or perhaps not now. Think of this as one of those warnings they show before movies- if you’re not up for thinking about death and hospitals now, hit save or delete.  If you do read it, I’d be interested to hear your thoughts on the subject.

Ginny/Mother

I ran really long writing this, so I’m splitting it in two.  Just to let you know- the rest of this letter is my musings about the things I read about in the book- so if you don’t want to think about death in a modern hospital- see you next week! You’ve been warned. Don’t bother opening Part 2. I did write it. I did think about it. I think it’s worth reading and thinking about- but perhaps not for everyone. Or perhaps not now. Think of this as one of those warnings they show before movies- if you’re not up for thinking about death and hospitals now, hit save or delete.  If you do read it, I’d be interested to hear your thoughts on the subject.

I should probably start by saying that while many of the issues I’m about to talk about were brought up in the book, others weren’t. I’m sixty now, and I’ve had my own experiences with death, and I’m sure they had a huge impact on my attitudes. I also, as the kids say, often over-think things. My mind is a playground. I enjoy trying to make connections between disparate concepts. I like looking deeply at an issue and trying to see how it connects to other issues.

For example: this current passion for zombie books and films. Zombies obviously are more popular now than they did twenty or thirty years ago. Also modern conceptions of zombies are different than the traditional ones of victims raised from the grave to be virtual slaves by exploitive masters. Our zombies are faster, more aware, and have a taste for brains. They are an excellent symbol for “what makes a person a person”? “What is the definition of life?” Zombies move. You must pay attention to them. But while they may look like your loved one, are they? Or had you better put them down before they eat you? (suck the life out of you would be more for the vampires) This could well be an analogy for those on life support- they use up your time and mental, emotional, and financial resources, but are they your loved one, or are is it just your loved one’s body? In respect for the person you loved, you need to help get their body “really dead”.

I’ve also thought about other movies and how they reflect our changing attitudes toward death. Steel Magnolias is a classic example of a realistic portrayal of dealing with death. The Dead Zone and Pet Cemetery both reflect Steven King, and his audience’s fascination with death. Flatliners played into the fantasy of CPR resuscitation. Every one of those pretty young med students should probably have immediately noticed a reduced mental capacity, and seeing it in the first ones would have prevented the plot from going as it did. But, fiction is fiction.

I have to also say I’m struck by the similarities between the questions raised by end of life care and prenatal and abortion questions. How do we define what a person is? What part of our tissue, if any, is sacred? To be treated with respect? Can any part of it be commodified- even if it’s going to save the life of another? Who gets to make those decisions?

I think that the main point the author, Sharon Kaufman, was trying to make was that even though both patients and doctors deplore the way technology can result in a manner of death that we don’t like, we can’t blame it on any groups actions or insensitivities. The problem is that death is incredibly individual and we can’t come up with advanced directives that cover all the factors that have to be taken into account. Pre-planning implies that we can choose between options, but with death, the options are beyond our ability to anticipate. The cases she studied included many people who didn’t want “heroic measures”, then changed their minds, and those who did, but also later changed their minds when their understanding changed. And often, when there are families involved, some may be ready for the death while others aren’t. Hospitals have to not only provide the medical care, but try to facilitate people coming to terms with death, and that (theoretically) isn’t in their job description.

Other issues come up because of terminology used. Doctors are often ambiguous- because they are being precise. They know that with humans there are no certainties, and therefore will not get pinned down to an absolute, thus giving patients and family opportunities to misinterpret. There’s also a lot of jargon, words with which patients are not familiar, and worse, ways of phrasing things that are interpreted differently by different subcultures- or individuals. “Coding” refers to “code blue” (obviously, the color code is a way to refer to something without causing panic or invading privacy) means reviving someone who’s got cardiac or respiratory arrest- CPR. They’re used to it, they know what it means. We don’t (and think we do). We’ve all seen it on TV and in movies. Either it’s a sad moment when someone dies despite best efforts, or, more often, they’re back, and just fine. But sadly, the (fictional) story is not well served by the reality that those brought back are often mentally impaired to some degree. Doctors see it as a very heroic measure, which, when combined with a frail patient who’ll be dead shortly anyway, could constitute unnecessary roughness.

As an aside, I remember the time when I was “coded”. I was pregnant, and had gone to our local hospital for an ultrasound. I informed the technician that I got dizzy when I lay on my back, and she told me that’s because of the baby pressing on the major blood vessel, cutting off the flow of blood to my brain, but I shouldn’t worry, I wouldn’t need to be in that position long enough for it to be a problem. The next thing I knew I was surrounded by doctors asking each other if anyone knew whose patient I was, and trying to figure out what had happened. None of them asked the technician, so it took a good long time for me to convince them that I didn’t need a lot of other tests. A month or two later when I came back for another test I was informed that they no longer allowed tests to be done on anyone not under the care of one of the doctors from that hospital. I guess they didn’t like not having a patient history for me. Each of us creates ripples of effects around us as we pass through life.

I also want to be clear that doctors know about the power of words. They don’t tell a patient that he can’t live because that could set up a belief in the patient’s mind where he “must” die. They are well aware of both the concept of “placebo”- a calm, firm, supportive statement that the patient will heal, will often result in healing, likewise the less well known “nocebo” effect, can result in worsening of condition caused by suggestion. Doctors aren’t the sole source of these suggestions, of course, they come from family, and culture, and everything else that can reach the mind and thus affect the body. Since doctors know this happens, they are VERY careful to not say anything that could possibly set off such an effect. This drove us nuts when Ælfwine was in the hospital and we were trying to get some decent information out of them. I always had to go home and hit the internet or books to find out anything! But I can respect their logic. I just feel that there are people who do better with the facts, and people who may want the doctors to be reassuring. But how’s the poor doctor going to know until he’s gotten to know the patient⸮

Another point that the author made was “people don’t know what dying looks like”. (Well, how would we⸮) It seems that these days they use morphine not just for pain control but to help breathing, specifically to suppress the “death rattle” so it doesn’t bother the family. Since we’re all concerned that the dying person may be in pain they can’t express, we tend to figure that the morphine is for pain. Ah, the things I probably didn’t need to know!

I’ve said it before, and I’ll say it again- the way they measure “life” is not the way I’d measure it. Cancer treatments are compared by how many days/months/years there are between diagnosis and death. Ælfwine was supposed to have about three months if he didn’t accept their treatment. When you add up the days he spent at home between diagnosis and death, it comes out pretty close to 90 days. He did get one more Pennsic out of it, and he liked that, but when it comes to pain and loss of control of his life and loss of doing what he wanted to do, I don’t think that the half a million dollars the insurance company paid out to keep him alive for that year was worth it. A half million dollars can do a lot of good if applied properly, and I don’t think that was it.

The whole “death with dignity” ideal assumes a common ideal of what dignity is. Some people would feel it wrong to not fight for life until the very end in every possible way. Others are willing to accept that since we’ll all die sooner or later, they would rather avoid pain, or a long period of helplessness, loss of control, and stress for their family. Many base their choices on what seems most palatable for their family.  Dignity often seems to be based on choice, and modern hospitals (in this study at least) defer to the patients wishes, or the family’s, if the patient is beyond speaking. Still, patients and doctors have a lot of choices constrained by hospital or insurance or other payer policies, such as those that require that a patient be moved to another facility when they are no longer being treated effectively where they are. Palliative care is a good thing, if that’s what you want, but if you don’t, you are really not going to like that you aren’t being given the option to keep trying something else.

While the law guarantees “patient autonomy”, the psychological tests I took in high school and college showed back then that there is a huge difference from person to person of how much autonomy they want. Ms. Kaufman wrote about how that range of need for autonomy made great differences is what people wanted from the hospital, care givers and their loved ones at end of life. It would be incredibly inappropriate for us to try to decide a “right” response and force it on everyone. Luckily, this is one problem that does not seem to come up. The doctors and other staff work very hard to give each patient as much autonomy as they want (actually, they often wish they’d take more). Still, we have to assume that there’s a range of personalities in doctors as well. As the saying goes: “In a room full of puppies and kittens, what will get the most attention is the rattlesnake.” We have to be careful not to characterize the profession by the occasional negative incident. I say this because I’m about to share one.

When Lisa’s mother died, the doctor on duty ignored the DNR order and resuscitated her anyway. For the next two years Lisa’s father spent all but fifteen minutes a day feeding, dressing, cleaning, and otherwise caring for her until she died again, because, as noted in the book, after the resuscitation, her mental and many of her physical capacities were greatly impaired. (If one accepts one definition of life as having subjectivity, agency and self identity, one might say that she was not really alive.) When the next medical crisis came, the DNR order was respected. Lisa told me that the only time she’d ever seen her gentle father nearly strike anyone was when they saw the doctor who’d chosen to inflict this living hell on both her parents, and he said “Well, at least we got you another two years.” Personally, I’d like to sentence doctors who show a pattern of ignoring DNRs to providing that 24/7 care to some of the people they’d “saved”. I think the chances are good that they are specialists who may not know, any more than the people who get their idea of what CPR is all about from movies, what the after effects are. They could probably learn. But only if we tell them. Lisa’s father didn’t strike him, but I don’t think he told him either. I wonder if that isn’t doing a disservice to both the doctor and his future patients.

When talking about many types of problems, people often say “well, it’s better than the alternative”, as if the only alternative was death, and frankly- most of us don’t know about most of the alternatives, about the difference between, for example, a coma and a persistent vegetative state. We don’t want to look at a choice between life in a vegetative state and death, we want to find some choice that will lead back to health. Some option other than doors number one and two.

We talk about “life support”, as though it was all iron lungs, but just about every form of what we might call life support- IV medications and hydration, stomach tube feeding, respirator, dialysis, etc. are techniques designed to help someone through a medical crisis until their body heals and they get better. Often those who arrive at old age have used those therapies to get well before. We try to tell ourselves that this is another of those times.  But sometimes, when a body is worn out, it can’t get better, and there the technology is, maintaining one function while other functions fail around it. If our bodies were only like the “Wonderful one-hoss Shay” and “went to pieces all at once”, we’d be fine, alive one day, dead the next. But we’re not built that way. So we treat each problem one at a time, until there’s damage sufficiently massive in one system, or many systems failing small ways, and life becomes impossible. At what point do you shut down all the treatments that are keeping the body going? Generally when it’s clear that there’s nothing to look forward to but more lying in bed, probably in pain, with lots of “support” (or a bit longer, if it helps your child or partner come to terms with your loss).

We are generally comfortable with the idea of “support”, something that helps us when are bodies don’t work as well as we’d like. Think about it: glasses and hearing aids are hardly even noticed. Wheel chairs and prosthetics are just mechanical aids. Many people live for years on dialysis, or with pacemakers, or medications adjusting their blood pressure, or preventing flair ups of symptoms of any number of diseases. We don’t start thinking about “life support” until we get to respirators or feeding tubes, or IV antibiotics.

This whole “death problem” is SO recent! It’s developed, piece by piece pretty much during my life time. Technology changes our lives, bit by bit. Back when Ælfwine was alive cell phones may have existed, but the only people we knew who had them were yuppies. (do yuppies exist anymore?) Not only does just about everyone have computers, a huge number of people carry computers with more functions and memory than the one Ælfwine started Knightwriter, his business, with back in 1981! What we consider normal changes from year to year, and our Culture is left running after the potentials and problems created by technological innovations, trying to catch up, much less adapt. We have NO real chance of actually trying to impose control on the effects of these technological innovations.

I remember reading in MASH goes to Maine about Hawkeye learning heart surgery in the 50s which was becoming possible because of the development of the mechanical respirator/ventilator in 1955. The book gave a history of how we got where we are, and I’ll try to recap it in a couple paragraphs. As I read the chapter, I plugged “where was I at that point” into the progression, and you can too.

In 1965 CPR was invented- or came to the public awareness. Almost all of these milestones certainly had periods over which they were developed. Medicare was instituted as part of our “Great Society” that could afford to care for it’s elderly. As organ transplant technology developed, they had to come up with a way of figuring out what dead really meant, but the idea of “brain death” (irreversible damage to the entire brain), only goes back to 1968. In 1969 Elizabeth Kubler Ross published On Death & Dying  and introduced the concept of the five stages of grief, which is so accepted today. It was revolutionary then. In 1971 Nixon, noting that one in twenty people got cancer, whereas in 1900, it had been only one in seventy eight (after adjusting for increased life spans) declared the War on Cancer. (Now it’s pushing from one in three to one in two people getting it. This is not “increased life span”, we are poisoning ourselves.) Nine years after CPR was developed, in 1974 they came up with the idea of DNR orders. It had taken less than a decade for hospitals to decide that resuscitation should not be done every time someone died. By that time respirators were ubiquitous, and 1975 saw the Karen Quinlan right to die case. In 1981 the Uniform Determination of Death Act addressed the troubling questions that were arising from having both the traditional, cessation of breathing and heartbeat definition of death and the more recent “brain death” definition. If a patient was brain dead, what were the ethics of supporting the organs that could be used to save the life of anther person by mechanically breathing and keeping the blood going? If you turned off the machine, were you murdering the person? This continues to be the core of the problem for most of us. Is not doing everything to maintain life, murder or is it allowing nature to take its course and keeping the machines going unnecessarily torturing the person?

(I think I’ll interpose here some of my personal landmarks- Lisa, one of my closest friends, was a Hodgkins surviver, but lived, married and had a son. Another friend, Laura had a heart lung transplant- she’s still alive. One of my mother’s friends had one of the last cadaver kidney transplants, and over 21 years later, when that failed had another from a daughter. My mother got stomach cancer, had it operated on was declared in remission, and went on with her life. Of five teachers in our tiny school two got breast cancer, both lived and are still living, another did die of a different cancer. The economy was not great in the 80s, but medical care sure looked full of miracles.)

In 1983 Medicare changed the way they reimburses hospitals from by expenses, to by diagnosis; this meant hospitals wouldn’t be paid for someone who was dying if there was nothing more than could be done to cure them (unless they could cover it themselves). By this time the highly technological hospital care cots had sky rocketed. In 1984 the Hospice and Palliative Care Organization was formed.  Often patients still needed care to keep them alive until they died, so in 1987 special Long Term care facilities were developed as places where the life support could be continued. (The estimated average time in one of these facilities is five and a half years.) As more people went on life support, it got harder to take them off, so in 1989 the  Study to Understand Prognosis and Preferences for Outcomes and Risks for Treatment (SUPPORT) was begun, to be completed and released in 1995. It covered many of the same issues as this book did- it’s just about impossible to say with certainty that a sick person cannot recover, because occasionally they do. That means that it could be wrong to withhold life sustaining treatment for someone who might recover. The odds can be calculated, but the decision is still a personal one for each individual. In 1990 Congress passed the Patient Self Determination Act. In 1994 the category Persistent Vegetative State was defined (awake, but not aware, in contrast to a coma where they are unconscious). In 2001 the Patient Bill of Rights was instituted. I still remember them passing us a copy at every admission. (I also remember once refusing to sign a form saying I’d received one, because I hadn’t, and they said they were given out at the next station. I told them that they had obviously put the stations in the wrong order, since I couldn’t sign a legal document that said I’d gotten something I hadn’t gotten, and made the woman wait until I’d gone over and been given it and come back. She wasn’t supposed to let me move on until I’d signed her paper. It is the little times when you get to reassert your control that give you the little victories that allow you to negotiate that labyrinth of indignity.) I can remember many of the milestones happening in the background of my life, and in the deaths I observed. They represent a HUGE departure from most of history when people got so sick that they couldn’t keep breathing, and when they couldn’t breathe, or eat, or pump blood to their brain, they died.

When my mother called to tell me that she had liver cancer and had been given three to six months to live, she pointed out in her special way: “We all die, dear.” We do, but sometimes we are able to put that sad fact out of our minds. There are so many other things to worry about, or plan for, that you’re going to not get to some of them, and especially- as you can’t possibly know what the circumstances of your demise will be, why worry about it before hand? In 1963 my grandmother died of lung cancer. She’d spent the summer getting radiation treatment in Portland, and I got to spend that time with her. When that failed, they tried cutting the cancer out, but she only lived a few days after the operation, but I never saw her after she went in for it. Between then and when this century, so many medical breakthroughs were made that when Ælfwine got his diagnosis, we figured we’d be one of the success stories, and weren’t frightened. Admittedly, Lisa, having managed to beat Hodgkin’s Lymphoma when she was 16, ended up being one of five Hodgkin’s survivors to develop a non-Hodgkins Lymphoma, in her mid-thirties. Being busy with my own life, I saw her rarely enough that each time we got down to visit we could see the heartbreaking decline that goes with cancer. I’d shared the herbal remedy Essiac with my mother, which she took to humor me. Whether that was the reason or not, she managed to totally confuse her oncologist who’d never seen anyone with liver cancer survive more than three years. When she did die, she did it in her own bed, having had a good meal with Dad, Uncle Charley and Aunt Amanda the night before.

My brother Bob developed esophageal cancer a bit before Ælfwine got Leukemia. They promised each other not to go to the other’s funeral, but that didn’t work out for them. Bob tried everything available, then he went home with hospice care. Busy with Ælfwine, I didn’t see him that often. While he was still conscious, I know he was in pain. When we visited, I did Reiki for him, but unlike most of the times I’ve used Reiki, when I’d stop, the pain would return. (Mother had said the Reiki helped her too- and I know with Ælfwine, he could get two hours of pain relief from Reiki, when the amount of morphine they’d allow him would only last for 30 minutes. I think everyone whose relatives get cancer should learn Reiki, and do it early and often.) By the time they gave up, Bob was too ill for repair- not by one practitioner anyway. The morphine pump just barely kept the pain under control. He was exhausted and would drop off then the pain would wake him up again and keep him awake until the next time pushing the button would allow another dose- every six minutes. The best gift anyone could give him was to sit by his bed for a few hours pushing that button every six minutes so he could get some uninterrupted sleep. We know the debilitating effects of lack of sleep. That alone can cause pain (it’s been implicated in FM/CFS pain). But medical personnel are worried that if they give too much pain relief, it could depress breathing, and result in death. Well, gee! What a tragedy that would be! No, instead of an overdose, Bob had to die of frigging dehydration over several days (another pretty wretched way to die) lying there with his Pooh bear beside him, while we all waited for him to die. Was he in pain? We don’t know because the unconscious can’t communicate. I like to think that at that point the pain disconnects the pain signals, knowing that they’re pointless. Still, I was not all that impressed with hospice as I saw it in my brothers case.

In the book I read that sometimes long term care facilities send people back to hospitals for “failure to thrive”. This diagnosis, usually seen in babies who are not getting sufficient care, may be what people used to call dying of old age. As if someone is going to be LESS isolated, depressed, weak, tired, and eat and sleep better in a hospital!  But when doctors created the International Classification of Disease, (so that doctors in Europe and the US would agree about what to call any set of symptoms, and presumably the rest of the world would follow suit), they didn’t define old age as a disease. Not being a disease, it can’t be treated (or, perhaps more importantly, have any treatment for it reimbursed).

This is one of the things that was, I think intentionally, left out of the book: Money. Doctors don’t want to think about money. They want to be “above” such mercenary concerns. (They hire other people to be mercenary for them.) They want to be able to base their diagnosis and therapy recommendations on what they think is best in some imaginary world where money doesn’t come into the equation. But despite insurance, it does.

Another example of how my passing through created a change in the world was during my first pregnancy. As with many young couples we were pretty broke. When Ælfwine got his first job with Homer, we went from going further in debt by $500 a month to only $200 a month, and we thought that was great. When I realized I was pregnant, I obediently went in for a doctor visit and when the doctor told me what to expect, including the first run of blood tests, I asked him how much it would cost so I could budget for it. He guessed about $200 over the course of the pregnancy. I asked him what the tests were, and told him that some weren’t needed. For one, if they wanted to know my blood type, it was on my blood donor card. A couple weeks later we got the bill for the tests and they had done all the standard ones- including the ones I’d told him I didn’t want, and the bill for that set alone was over $200. I went to talk to the billing people. The man said I was liable for it because I’d given my consent. When I told him I had told the doctor no to some of them, he said my consent was implicit from letting them take the blood. I told them that since I had specifically refused several of the tests, they had taken them against my will. If they didn’t trust the Red Cross and wanted to type my blood themselves, that was for the hospital’s benefit, not mine; and they should pay for it.  I also pointed out that it could not possibly have been Informed Consent when I was misinformed about the cost. Doctors may like to not have to worry about costs, but patients are people, and when the bills for the tests mean I can’t afford to pay for food or heat, that’s a concern to me. As you may imagine, the billing representative was willing to set up a payment plan, but said that as far as the hospital was concerned, my arguments were not good enough. Maybe. But a month later, when I went in for the next visit, there was a huge sign in the waiting room, in English and Spanish, with the cost of  the standard prenatal tests and visit expenses up there for everyone to see. I think my arguments had been good enough to put a scare in them.

This whole “we don’t want to worry about money” bull is based on a premise of “Infinite Resources”. What would be best for the patient- if money were no object. Let’s make sure that every patient gets whatever is available without thinking about the money. But since the medicines and trained specialists all have to be paid for, then we have to come up with things like “managed care” to pay for it. Let’s create the maximum amount of billable hours (etc.) then if we spread it across everyone, the sick and the well, then everyone can get the maximum amount of treatment. This is neither good economy nor good medicine. It has led to the situation that if you don’t get the maximum, the provider can be accused of not doing “enough”. Worse, the only ones who benefit from it are the people who sell stuff to the hospitals.

Aside from those issues, resources are NOT infinite. There IS scarcity. When Ælfwine’s blood pressure started plummeting during a “routine” transfusion, (down below 70 over 40) they kept calling for a bed across the street, but there wasn’t one available. They had to wait for someone to get discharged to create a space to put him in. That was the day he came closest to dying until he did. Because a few hundred yards from the hospital, and with knowledgable people trying to get him help, they didn’t have any place to put him. Other times they put him in the cardiac ward rather than oncology. Sometimes there are empty beds, but sometimes there are more patients than beds.

There are also blood shortages (especially of rare blood types like his B negative). There must be drug shortages. There are personnel shortages. People who deal with hospitals KNOW that nothing happens on the weekends. He was diagnosed Friday afternoon, and the doctor (who we never saw again, thank goodness) told us that “if he wasn’t admitted immediately so they could start treating him, he’d be dead by Monday.” (OK, we can adapt what I said about doctors being careful not to make negative statements- they are willing to do it if they are trying to frighten you into doing something they want.) That doctor had to have known that there wasn’t a damned thing that would happen until Monday. It was BS, pure and simple. Probably because we didn’t look scared enough at the cancer diagnosis, and he was trying to get our attention. Sometimes acting calm and hopeful isn’t a great advantage.

So this week I read about dying in hospitals. The very fact that hospitals are doing their best and it’s still that bad is not particularly reassuring. I suppose it’s reassuring that they are trying so hard to give the patients what they want. But I think most people neither know or want to know about dying until it becomes thrust upon them, and then they feel overwhelmed and just hope for the best. Things have to get pretty bad before people are willing to take the option that you can’t change your mind about later. Dead is dead.

I think I probably have an advantage, because of my metaphysical training. When Ælfwine was in the coma, I went into a trance to find and follow his consciousness. When I found it, he was in a big field, and in much of the neo-pagan traditions the afterlife is presented as a big field, so you can imagine that I was not much pleased. OK, let me be honest- I freaked, and lost the trance. I sent some messengers to him, asking him to wait, if possible, and I did do a lot of healing work on him in the hospital. I see no reason to think that those of other faiths might not use their contacts with God, the saints, or whoever they pray to for non-medical information when making decisions, and that those mechanisms for decision making aren’t valid. I don’t think it’s any advantage to try to disassociate our spiritual practices from our intellectual decisions. But then, I do integrate them in my life. I should give other people the choice of using emotion or intellect or spirit or any combination to run their lives the way they want to do. Still, I wish we, as a culture and as individuals, would face up to the need to work on making preparations for death, so we aren’t just guessing, and stalling, and trying to figure it out as we go along and that we had mechanisms in place to help us deal with the technological advantages we have.

“We all die, dear.” Some day my kids will have to deal with me dying, and I hope that I’ve expressed my way of making decisions well enough so that when Willow is asked what I’d want she can be confident in answering. It seems a rotten thing to do to someone you love to give them a job and not the tools to do it with, which is how I see NOT getting around to talking about your preferences for illness and death with those who’ll have to deal with it. But our culture really stinks at encouraging people to look at death. Gore, horror, fictionalized death sure, but real death? That’s easy to put off. When the other person says, “not now” you breathe a sigh of relief because you didn’t want to either. But when there’s a tube down your throat, you’re gonna wish you’d talked about it when it wasn’t there. Or maybe there will be some sort of big apocalypse, in which case, as we just watch each other die horribly and have to dig each other’s graves with shovels, dealing with hospital deaths are going to look a lot better! I’m going to come back to my usual SCA response- everyone else before our generation had to manage, I figure we can too.

Now don’t you hope I’ll go back to reading history or fiction next week?

Ginny/ Mother

“Do you fear Death?” – Davy Jones in Pirates of the Caribbean

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