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Quality of Whose Life, Again?
[This recent and thought-provoking post by Rana on lifestyle assumptions from mainstream privileged environmentalists got me to thinking of something I wrote at Pandagon in May, which I suddenly realized never got cross-posted over here. So go read Rana’s post, which is unsurprisingly excellent as are her expanding thoughts in comments, and then come back and read this, which has been edited slightly from its Pandagon form.]
I was chatting with a friend recently about his father, who has become, in his advancing years, more of a management problem than my friend’s mother can handle. The family made the difficult decision to place Dad in a nursing home. Not entirely coincidentally, that same day we had both read this piece by Mary Kay McKown, entitled “The Elusive ‘Good Death’ for Frail Elders”:
For many Americans, the notion of “a good death” evokes a vision of dying peacefully at home, in the presence of loved ones. Although the Medicare hospice benefit was created in 1985 to facilitate this possibility for adults over the age of 65, very few people over the age of 80 die at home.
As a… nurse practitioner, I have worked closely with elders and their families, community case managers, home health and hospice interdisciplinary teams, geriatricians, and hospital-based providers to facilitate “good deaths” for frail elders in their homes, hospitals, and intermediate care facilities… I am concerned that the specialty of hospital-based palliative care may be contributing to the “medicalization” of death. By this I mean that death in old age is increasingly viewed (by patients and providers) primarily as a highly compromised physiological state that needs complex medical management, rather than as an important family event that can be anticipated and skillfully supported outside of the hospital.
It’s a good and heartfelt article, and I agree with most of it: A hospital is the last place I’d want to die. But there was something familiar about the issue, something that reminded me of a number of other quality-of-life issues that have been getting more notice in the public mind of late. Quality of life is an admirable, if vague, goal, but the question comes up: of whose life are we contemplating the relative quality?
Yes, death has been increasingly medicalized, but McKown isn’t exactly advocating de-medicalizing the process, just changing the venue. The problem isn’t that death has been medicalized — no one seriously advocates getting rid of doctors and nurses for aid during the process — but that it has been corporatized, like so many other facets of life. We get sick enough to die, and then the course of what’s left of our lives is lived out in impersonal surroundings, our needs attended to by strangers — skilled strangers, true, but dispassionate nonetheless, our decisions circumscribed by HMO policy and procedures driven by monetary concerns of either the cost-cutting or ass-covering varieties.
But when parts of our lives get corporatized, it’s generally the case that the associated relationships get monetized. In English: suddenly we find ourselves paying someone for labor we once got for free.
Or, as Ron Sullivan put it a couple years back, reminiscing about the good ol’ days:
Remember how it felt when you realized those nice gentle brothers still thought you were a household appliance? The only household appliance they weren’t ready to give up when they went all wholegrain and groovily off-the-grid?
Well I do.
Like so many other arenas in which quality of life is seen to be dwindling in these here Modrun Times, the “good death,” in being cast as The Way Things Used To Be (though not by McKown, explicitly) is based on the assumption of unpaid female labor. Of course, there’s nothing intrinsic in dying at home that requires the presence of estrogen: men can turn over bedridden elders and clean out bed pans and advocate for the patient just as well as women can. But get real. What we’re talking about here is women — wives, sisters, daughters, mothers — taking care of the dying person for free, though perhaps with some paid expert help if they’re lucky, a nurse practitioner or attendant paid to come by for a couple hours a day.
This assumption runs deep in the quality of life movement. Ivan Illich — who not coincidentally was one of the first popular critics of overmedicalization — explicitly distinguished in his 1983 book Gender (Open Forum) between modern discrimination on the basis of gender, which he properly condemned as sexist, and forced gender role differences in traditional societies, which he called something like “gender differences” and defended as crucial to a sustainable, stable society. Illich’s conception of a sustainable stable society has influenced generations of cultural critics, for better or worse. His writings echo in the pronouncements of people from Amitai Etzioni to Wendell Berry, whose reluctance to get a word processor some years back provides my favorite example of this phenomenon:
My wife types my work on a Royal standard typewriter bought new in 1956 and as good now as it was then. As she types, she sees things that are wrong and marks them with small checks in the margins. She is my best critic because she is the one most familiar with my habitual errors and weaknesses. She also understands, sometimes better than I do, what ought to be said. We have, I think, a literary cottage industry that works well and pleasantly. I do not see anything wrong with it.
A number of people, by now, have told me that I could greatly improve things by buying a computer. My answer is that I am not going to do it. I have several reasons, and they are good ones.
The first is the one I mentioned at the beginning. I would hate to think that my work as a writer could not be done without a direct dependence on strip-mined coal. How could I write conscientiously against the rape of nature if I were, in the act of writing, implicated in the rape? For the same reason, it matters to me that my writing is done in the daytime, without electric light.
I do not admire the computer manufacturers a great deal more than I admire the energy industries. I have seen their advertisements. attempting to seduce struggling or failing farmers into the belief that they can solve their problems by buying yet another piece of expensive equipment. I am familiar with their propaganda campaigns that have put computers into public schools in need of books. That computers are expected to become as common as TV sets in “the future” does not impress me or matter to me. I do not own a TV set. I do not see that computers are bringing us one step nearer to anything that does matter to me: peace, economic justice, ecological health, political honesty, family and community stability, good work.
What would a computer cost me? More money, for one thing, than I can afford, and more than I wish to pay to people whom I do not admire. But the cost would not be just monetary. It is well understood that technological innovation always requires the discarding of the “old model”—the “old model” in this case being not just our old Royal standard. but my wife, my critic, closest reader, my fellow worker. Thus (and I think this is typical of present-day technological innovation). what would be superseded would be not only something, but somebody. In order to be technologically up-to-date as a writer, I would have to sacrifice an association that I am dependent upon and that I treasure.
Commenters may submit analyses of Berry’s insistence on exploiting female labor as a way to avoid taking part in metaphorical “rape” in fulfillment of the requirements for issuance of a Bachelor of Snark Degree from UCRN.
In a paper published a couple weeks ago, Dr. Sherilyn McGregor of Keele University in Staffordshire points out that when environmentally sound living requres extra work, that work is usually “women’s work.” Her paper is a useful and readable summation, and if it weren’t encrypted read-only I’d paste some of it here. Still, this is not news to environmentalist women. What decisions are environmentalist citizens asked to make? Choosing the green laundry detergent and toilet paper and buying organic groceries. Carrying cloth bags to the supermarket. Using non-toxic cleansers. Adding corporate citizenship to one’s list of brand loyalty factors and schlepping the Seafood Buying Guide around. Sorting trash into the proper containers for recyclables, compost, and landfilling.
Of course, we men carry all those containers to the curb, which perfectly balances the division of labor. But then you add Environmentalism 2.0 to the mix, and you have the Slow Food (read: hours spent in the kitchen) and Local Food (read: hours spent shopping) movements, and with that kind of scheduling pressure a woman likely wouldn’t even have enough time left in the day to type up her husband’s poetry.
The fact is that for all the ills the increasing corporatization of society has brought us, it has assigned value to certain forms of labor that were once devalued. It certainly hasn’t always assigned enough monetary value to those tasks, but even a paltry amount is more than nothing at all. Opposing that corporatization doesn’t have to include rolling back that valuation, trying to build an Illichian paradise where people quietly fulfill their forced gender role differences.
I’m a huge supporter of the various movements for restoring the quality of our lives, but until they rid themselves of this blind spot they will go nowhere worth going. Sadly, that patriarchal romanticism is seductive. Look at this Wikipedia description of the “Slow” movement’s goals:
Even in the recent past in the West it was standard to have a day of relaxation because all shops were closed on Sundays. However, the current tendency in many parts of the world to operate at 24 hours a day has disrupted this tradition. Now, because people can do everything all the time, some feel they have to do things all the time. The Slow movement counteracts this by extolling the virtues of the enjoyment and savouring of living.
I don’t know what it was like for your family, but I seem to recall my grandmothers working just as hard on Sundays as they did on Mondays. Though maybe they were just enjoying the process of vacuuming before people came over to relax and savouring the sinks full of dishes the relaxing generated. Ah, the good old days.
Posted by: Chris Clarke
Note: A database glitch in 2008 ate a bunch of archived comments. Don't be offended if yours isn't here, or confused if the conversation seems disjointed. Thanks!
=v= I can understand various divisions of labor for slow food &c;. When those divisions follow the “from each according to their ability” (with room for everyone involved to flex their abilities), I’m down with that; when they follow entrenched sex roles, I must admit I’m more inclined to raise an eyebrow, and questions.
I can’t imagine not typing my own words, though I can certainly understand the value of having a good collaborator, co-conspirator, and/or editor going over them. Even so, I can be open-minded (with raised eyebrows) about a spouse doing the typing ... but only right up to the point where we never see her name on the byline, nor even in this description of her contributions.
By: By Jym Dyer on 2007 09 11
Remember this post well from P’gon; glad you reposted it here, and glad for the link to Rana’s excellent essay. Had also missed the rape of nature one you linked.
Am not slept enough at this moment to say anything coherent, but appreciate the reading this morning -
By: By Theriomorph on 2007 09 11
Thanks for recrossunderbyposting this while I was grinding my overpriced teeth about the subject, just per chance. Gail Sheehy somehow managed to write a whole article for the 9/9 issue of Parade magazine, the rag that comes enclosed in the Sunday papers, about how much end-of-life care falls to “families” to be done, and how much it depletes “caretakers” financially, physically, and mentally (quotes a minister about how often he buries the caretaker before the caretaken, e.g.) and what a crisis it’s coming to be WITHOUT ONCE MENTIONING WOMEN.
Whew.
By: By Ron Sullivan on 2007 09 11
And speaking of people named Ivan Illich, in “The Death of Ivan Illyich,” Ivan is tended by a servant, whose attitude is “what’s a little trouble when the Master is dying?” Tolstoi is terribly cold and unsentimental about what the approach of death means, but there’s still a servant around to do the tending.
By: By nm on 2007 09 11
By whom?
By several thousand years of history.
turning a human death into a feminist issue is, to my mind, grossly disingenuous.
And turning lynching into a racism issue is too, I guess. But some whites were nice to coloured folk, so it obviously wasn’t universally true that non-whites were fiercely oppressed.
By: By Rob G on 2007 09 11
Of course he’s not. He’s saying that these assumptions are based in long histories, and you can’t just toss that aside and negate it by recounting a few individual anecdotes.
The thread that runs along through all of these strands is an unrealized tendency to off-load the hard, ugly, unpleasant aspects of a “Good Life” onto someone other than the person making the proscriptions.
So a person nattering away cheerfully about how they love their farmer’s market, and how buying local organic veggies is the best way to be green, and expressing puzzlement that more people don’t bother reveals simultaneously (a) her privilege (not everyone - even, perhaps, most people, has easy access to a farmer’s market, can afford the time off to attend one, has the knowledge to buy wisely, can afford the costs, has transportation, etc.), (b) her unawareness of that privilege (it’s easy and rewarding for her - why wouldn’t it be lovely for everyone?) and (c) a lack of awareness that others do not share those privileges (the mother who works from 7am to 10pm working two jobs, six days a week; the man who lacks transportation to markets in suburban and rural locations; the family living on food stamps that the local markets don’t accept—all these are going to find “simply” going to the market significantly difficult and costly in terms of time, money and labor they cannot spare).
So people who talk blithely about “good” deaths at home without asking what the costs are, and to whom, or environmentalists who cannot comprehend that a city like New York isn’t going to transform into an earthly Eden on will alone, and people who rhapsodize about the days of yore while failing to acknowledge the real burdens - disproportionately carried by women, the poor, and the non white…
These people are promulgating a fantasy world. Worse, they are presenting it as a desirable alternative to the present state of affairs while ignoring the very real costs underlying the fantasy that, in all likelihood, will not be borne by people like themselves, should some fool try to put their pie-in-the-sky visions into practice.
Thinking about what constitutes a “Good Life” is not the issue - the issue is that one must do so honestly, with a genuine understanding and respect for the costs it entails. (There ain’t no free lunches!)
By: By Rachel Shaw on 2007 09 11
OK. Blowing the referee whistle before this goes further. Time out.
Warren, I would never think to infringe on your right to end your life the way you describe — a route I expect and hope to take myself.
In fact, I suspect few people here would argue that dying at home, or in any other manner of one’s choosing, is in any way a bad thing as long as the manner of one’s choosing doesn’t involve taking other people with you.
But I have to say the politicizing of death is a barn door whose closing was rendered moot a long time ago.
And I think what Rob was getting at in his inflammatory allegory* was not a comparison of harms but of dynamics in which anecdotes are conflated with data.
I know full well that men do nurturing. My father in law did much of the childrearing in his family. For that matter, I just sacrificed more than 50K per annum — with VERY little likelihood of landing a similar job at my age — to take care of a dog.
All I am saying in this post is that unexamined assumptions about who will replace the nurses and orderlies and dietitians and such ought not remain unexamined.
* and BAD Rob! I would NEVER do that kind of thing! But, um, I’m tired of blogfights and would rather lynching and death camp and such hyperbole be reserved here for discussions of lynching and death camps, at least for the nonce. Thanks.
By: By Chris Clarke on 2007 09 11
The problem with unexamined cultural assumptions is that they are so casual and when you try to examine them they cease to be casual and comfortable. Many people do not like that.
Any discussion about racist and sexist cultural assumptions always results in irritated denials and accusations of over-sensitivity and zealousness on the part of the person raising the issue for discussion.
By: By ellenbrenna on 2007 09 11
Sorry for the hyperbole, Warren. And point taken, Chris. My own awareness of unquestioned assumptions has often been brought about by someone smacking me upside the head (mostly metaphorically!), and there is a tendency (abetted by laziness) to rely on such tactics.
I agree that it should be every individual’s choice as to the manner of their departure from this vale of tears, but as with most choices we have to make, there are consequences that affect others.
By: By Rob G on 2007 09 11
By: By Chris Clarke on 2007 09 11
Urgh. There should be a new standard set for healing music.
By: By Rob G on 2007 09 11
my my my. berry’s example of why he would never give up his typewriter is classic—opposing corporate exploitation of workers and resources by using his wife as a human typing machine AND unattributed collaborator.
a lot of positive endeavors rely on unpaid work. [and as rana points out, the privilege of having time and proximity and opportunity to do a little better, for example, environmentally.] i know lots of of terrific men who put in the time, raising kids, caring for family and friends, contributing efforts to good causes, etc. so, it’s not a condemnation of all men to observe that a lot of the unpaid and unglamorous backbone of such efforts is still borne by women.
i’ve got some disagreement with the idea we can choose our deaths, though. someone who is ill and may not recover still may have living to do; someone who is injured badly may also. so much happens to people that is random and unpredictable. being able to make choices is a privilege, and i hope i end up having choices. the fact is, i may not.
although i was definitely in the “let me choose my death” camp as a younger person, experiences have led me to believe that suicide is really awful for survivors; the perspective of “who will suffer, who will clean it up” was not part of my thought process earlier.
By: By kathy a on 2007 09 11
kathy a came in and said what I was thinking, but more kindly. I was snickering at the hubris, or maybe just starry-eyed optimism, of someone’s thinking he can choose the circumstances of his death. You can make whatever resolutions you want, but you’ll be able to carry them out only if you’re very lucky indeed.
And you can be selfish about your own death if you’ve put in some time, labor, nausea, physical pain, and heartbreak seeing that others could be selfish about theirs. If you think the professionals are compensated adequately for all that, I have some news for you from the front lines.
Funny about that suicide thing. I’ve had some bad spells in my time and sometimes the only thing that stayed my hand was having seen the consequences of a couple of suicides and not being willing to make that particular mess. OTOH I daily use a large expensive object I bought from the heirs of someone whose suicide I consider entirely rational. And, as far as I can tell, so do those heirs.
By: By Ron Sullivan on 2007 09 11
This might be off-topic, I guess, but I’ve been wondering as I lurk. Why aren’t you at Pandagon anymore?
By: By Alex on 2007 09 12
Having seen several people live years with Alzheimers, Parkinsons, MS and other illnesses that required a fulltime at-home caretaker and how that caretaker just happened to be the daughter/mother/sister/sister-in-law, I would add that choosing a good death is not only about choosing the end. Sometimes the path to the end is long and painful, and the caretaking begins years before.
By: By Joanna on 2007 09 12
joanna’s right. i ended up being the family caretaker for my grandmother, who had alzheimer’s and lost her mobility after breaking her hip. her preference was to come live out her years in my home; she wanted to babysit my very young kids. that wasn’t going to work, at all. i was working full-time, wanted to continue my career, and needed to support and raise my own family.
we found an assisted care facility nearby; and then a nursing home, when it became evident she needed much more hands-on care. that was a challenge, because she had very little money left when i first assumed care for her; so we had to arrange for care to continue when her funds ran out, and she only had medicare and medicaid and social security. the paperwork alone is enough to drive a person wild. she had medical complications, and several hospitalizations over the years. we worked hard to visit often, and cover what she needed covered.
that’s not the same kind of caretaking as 24/7 care, but it was hard enough, those 6.5 years. my grandmother and i weren’t very close—she had moved from the state 15 years earlier without so much as a card or a call—but there was nobody else. grandmommie’s choice would have been to live out her life a different way, but that just wasn’t possible.
By: By kathy a on 2007 09 12
Oh good heavens, Warren, of course I have the right to judge others’ choices, and not “because of [my] bitter experiences” but on the same basis on which anyone has the right to judge anything. If you haven’t had your own similarly “bitter” experiences I can pretty much guarantee you will; none of us gets out unscathed. Or alive, which is the point, I suppose.
The short answer is this: Mocking? As the recent saying goes: I believe in gravity; that doesn’t mean I want to fall down. It also doesn’t mean I want you to fall down. I’m wondering at the heat with which you’re responding to the prediction that you’re unlikely to fall up.
In fact, not to go all psychoanalytic on your ass, I’ve been wondering what’s going on here in this thread for awhile. In response to a longish post about “quality of life” concerns and the history of invisible labor, you’ve claimed it doesn’t apply to you, that because certain key (but ancillary) claims don’t apply to your “forebears”—from the sentence, you mean only male “forebears”—they insult you and somehow shouldn’t be mentioned despite their being very widely true, you’ve made three contradictory statements about how you want/plan to die and then decided that people talking about the stuff you’ve claimed doesn’t apply to you are “casting judgments and aspersions on the end-of-life desires or choices of others.”
Good heavens.
Do you honestly think that most of the people reading (let alone responding) here don’t have end-of-life desires, plans, hopes? I daresay most of them match yours pretty closely. (One version or another. Physician-assisted suicide might happen at home but it’s unlikely to happen out in the middle of nowhere alone in peace etc.)
Is it news to you that your ability to direct things will happen only by chance? Why do you consider that statement to be insulting?
I’m tempted to real asperity by a couple of hot-button phrases you’ve dropped here—This one sentence:
“As much as I support the equality of genders (where feasible) in every aspect of life, turning a human death into a feminist issue is, to my mind, grossly disingenuous.”
contains several, and I’ll point them out if you want, and the dismissive {Well, they asked for it} attitude toward medical professionals is something only another medical professional gets to say about a peer without losing a bit of cred. Plus I do wonder when a “permanent homemaker” gets to retire.
But you know, that’s old hat to an old feminist. I suppose I could be cynical enough to suggest that some of your reaction arises out of the usual human resistance to making visible the formerly invisible, especially as regards invisible labor of all sorts.
Pay No Attention to the Woman Behind the Curtain!
Honestly, though, you might profitably think about how you reacted and why. I’m trying not to be condescending, but WTF is going on here?
By: By Ron Sullivan on 2007 09 12
Find myself thinking about Nanette’s beautiful and useful post The Benefit of the Doubt re: this unfolding conversation.
Like you, Warren, I hope to be able to die with dignity my own way, and not at the expense of others. May we all get our (unlikely) wishes – in my experience, that sort of death is an unusual gift.
I also found myself reacting strongly to some of the language in your comments, though, which felt dismissive of the unarguable experience of very real gender inequity in care-giving roles and expectations, which is what the originating post is about.
Chris blew the time-out whistle and asked for the discussion to not go further into blogfighting, and I want to respect that.
And, I think words like ‘choice’ (about well-policed gender roles and their effects on careers and options), ‘bitter’ and the earlier ‘politicize’ (to describe discussing the majority experience of women as caregivers vs. the few exceptions) are heavily freighted: given their history, them’s fightin’ words, even if not intended as such.
So, presuming general goodwill, and knowing the subject of death, loss and agency or lack of it in one’s manner of death are also freighted, I just want to say I don’t think it’s out of line for feminist women to say ‘hey, Warren, ouch.’ It also shows engagement with rather than dismissal of you to do so, you know?
It demonstrates trust that there is a dialogue worth having between those who benefit from sexism and those who do not, to make it more likely for all of us that we will have the beginnings, middles, and ends we wish for.
By: By Theriomorph on 2007 09 12
warren, i understand where you are coming from. but slow down, because ron’s got some good points.
there’s another one i want to make about physician-assisted suicide: it’s illegal most everywhere. how could i ask a doctor i trust to risk prison for me, assuming i’m lucky enough to have some choices about how to go?
the short answer, for me, is that i can’t. pain relief and comfort care—that’s legal and i’m all for it. potentially ending a good doctor’s career for my extra wishes? not happening.
many people choose caring professions because they believe in relieving suffering and supporting other humans. but the work can be very wearing. i’ve seen or heard of burnout with oncologists, ER doctors, intensive care nurses, social workers, hospice workers, ministers, firefighters, police officers, teachers, even lawyers. probably you know of some stories, too. being professional does not relieve one of having human responses.
warren, nobody is denying your right to think of the choices you prefer. chance may not grant you those choices, though. the law may not be on your side. and what you choose may have consequences for others—not necessarily ones you intend, not ones they want, but there nonetheless.
By: By kathy a on 2007 09 12
* Or maybe that’s not the framing intent at all, but it sure seems like it to me.
Oh, that’s explicitly the intent, Warren, though I would have gone with “lens” rather than “frame.” But I don’t think that looking at the issue through a feminist lens precludes other ways of looking at the issue. There are huge class issues to be dealt with here, for instance, some of which I cover in the discussion of monetization of caregiving roles.
I think — in line with our new abundance versus scarcity motif here at CRN — that having a collection of different lenses, or frames, or lenses and frames… eyeglasses! That’s it! I think having more than one pair of specs is a good thing.
By: By Chris Clarke on 2007 09 12
Appreciate the thoughtful response, Warren.
For me, the feminist contextualizing you mention comes straight from the original post, as much as from my commitment to social justice.
Like so many other arenas in which quality of life is seen to be dwindling in these here Modrun Times, the “good death,” in being cast as The Way Things Used To Be (though not by McKown, explicitly) is based on the assumption of unpaid female labor.
There’s a lot in there about life, living, and invisible women’s labor, too - Wendell Berry, the ‘Slow’ movement:
...Berry’s insistence on exploiting female labor as a way to avoid taking part in metaphorical “rape” ...
...In a paper published a couple weeks ago, Dr. Sherilyn McGregor of Keele University in Staffordshire points out that when environmentally sound living requires extra work, that work is usually “women’s work.”
And near the summation:
I’m a huge supporter of the various movements for restoring the quality of our lives, but until they rid themselves of this blind spot they will go nowhere worth going.
So while the discussion here in comments has been focused more on the realities of end of life stuff for the dying and the doctors, the larger point about the exploitation without pay of women’s labor is the one I responded to, and still do.
All hail hospice workers, and doctors concerned with good deaths for their patients, and people’s right to die with dignity.
That’s not really what the post was about though.
Through these specs, anyway.
By: By Theriomorph on 2007 09 12
this discussion has crossed a whole lot of issues. i like the idea of different specs, chris.
the terri schiavo situation was pretty unique. most families get to make these kinds of ghastly decisions without having a religious vigil outside the rest home, and years of litigation all over the news. thankfully. that was a horrifying invasion of family privacy and personal dignity.
at a different level, it is a stark illustration of how we don’t always have the chance to choose how or when we go.
caretaking is the reality for most families, one time or another. that is a feminist issue for at least two reasons: [1] most of the family (free) caretaking of ill or elder members is done by women, and [2] feminism is all about recognizing everyone as full humans, and their work as worthy.
one of my friends who benefitted from a feminist perspective on caretaking was a male secretary at my progressive office. his wife had a virulent cancer, and as it progressed, he took leave to care for her. the office had a catastrophic care policy, and co-workers donated vacation and personal days so he could care for his wife at home, and still have income once his sick and vacation pay ran out. it was the women in the office who visited, called, brought food and hugs.
and that is how it goes. when my adopted nephew [son of a close friend, who called me auntie] had brain cancer, whole circles of familes supported them. dads were definitely involved, but the bulk of the visits, bringing food, sending cards and comfort, being there when nephew was in the hospital or a coma—that was done by women and girls, mostly. my nephew was 12 when he died. the girls spearheaded a campaign to make 1000 origami cranes, for good wishes; two of them delivered the gift on his last good day, to his delight.
i think, as warren suggested, later-stage comfort care was not something that most of the men and boys felt they could do well. probably not a news flash, but the women and girls who showed up did not feel entirely comfortable, either—just that this was a situation requring comfort and presence. how to bridge that gap, i don’t know.
By: By kathy a on 2007 09 12
After the Revolution, Ms. McCarty, ALL capital will be social. And allcaps.
By: By Chris Clarke on 2007 09 13
warren, i do not believe that the problem is one of men not feeling all kinds of emotions. the men i know do.
but i also don’t think the difficulty i was thinking about is primarily emotional. it is primarily practical. who will: change diapers; administer meds; run errands; bring food; calm someone undergoing horrible treatment; change the position of a comatose person; make sure the dying person [and family] knows every day they are not alone; hold the sick one while he or she barfs, even if it is a dozen times a day, and then clean up; do the laundry; make a frazzled and bereft caretaker go out for coffee; change horrible bandages; listen while the dying person or a caretaker worries or rails about the unfairness, AND while they talk about what is important; be there, watching the vital signs fade away; keep a survivor from ending it all as the worst thing imaginable has just happened.
kathy mccarthy brought up such an excellent point; it was something i couldn’t quite put my finger on, but the harder part of thinking about death is not thinking about our own.
if we are fortunate enough to have friends and family, we are going to lose some of them—and the ways we lose them are neither predictable nor generally under our control. providing care and comfort for others is a far more important human concern than worrying about how we personally will go, in my opinion.
By: By kathy a on 2007 09 13
holy crap. what is happening here? such unblogly behavior.
does this mean we can expect to see bloghugbot soon?
dig into that abundance model, pal
By: By buck on 2007 09 13
ha ha ha
By: By Theriomorph on 2007 09 13
kumbaya trauma?
friends, i am moved to tell the story of my nephew. A was the most fabulous kid—curious, fun, loving, mischevious. he was diagnosed with brain cancer at age 9, and died at age 12. yesterday would have been his 18th birthday.
he was buddhist. at his funeral, the minister talked about how A decided to live his life to the fullest—the life he had. and that was very true. he knew, even before his cognitive functions began to decline, that he would not live very long. and he loved life, loved his family and friends. in his last good week before the final coma, A talked about what was important to him: his birthdate, his favorite color blue, and so many times, he called out to someone in his family, “i love you!”
it was also true that the disease derailed normal life for him and his family, for years. that at one point, A took a kitchen knife and threatened to kill himself, so desperate and conflicting were his feelings. true, also, that this wonderful boy went through awful treatments of every kind; had multiple strokes, seizures, and comas. he spent weeks, sometimes months, in the hospital.
his brothers were only 12 and 14 when A was diagnosed; 15 and 18 when he died; so, you can imagine the impact this had on them. there is no way to describe what his parents went through, especially his mother, who was his primary caretaker. there were whole circles of friends surrounding them, and A had excellent medical care.
but it was women and girls, mostly, who came to visit over the ups and downs of those three years; who brought food, wrote cards, organized support, made 15 minutes to drop by the hospital. women who stood vigil, helped the parents and brothers. women who cleaned; who helped with the physical care. i did plenty of barf-bucket duty, intensive care duty, caretaker relief; sat for hours as my sweet nephew worked out toddler puzzles [with joy] as his brain declined in the last weeks; went and got his brother from school when A died; made sure the hospice nurse got rid of the potentially deadly meds, because i was so afraid his mom wanted to follow him. it needed to be done, all that and a lot more.
anyway, that was a good death. really, A had a good death given the circumstance that he could not survive the brain cancer. he fought hard to live, or live as well as he could, and went gently and peacefully at the end. [i know that last part, because i was there.]
i think we need to acknowledge that comfort care takes a lot of time and effort. personally, i think it is worth that effort. i’d be glad for the effort to be spread broadly; not everyone gets a good death, and maybe there is no way to prevent that completely, but it would help for more people to believe there is dignity in the dirty work. or even to know that there is dirty work needing to be done; that would be a start.
By: By kathy a on 2007 09 13
This might be off-topic, I guess, but I’ve been wondering as I lurk. Why aren’t you at Pandagon anymore?
Who cares? As long as he doesn’t post there.
By: By Pandagonian on 2007 09 13
(Was gonna nuke Pandagonian’s comment as being, you know, assholery, but then it struck me: s/he’s exactly right, if perhaps not in the way s/he intended. So let’s move on.)
By: By Chris Clarke on 2007 09 14
I’ve been reading Pandagon for a long time. The constant meanness turned me off. When you started there I was really hoping you’d make a difference in that meanness, but then it seemed like it was getting to you. I’m glad you left.
If you and ilyka had a blog together, I’d read it every day. August and Berube too.
By: By Ellen on 2007 09 14
personally, i’ve never hoisted a barf bucket in honor of kumbaya.
By: By kathy a on 2007 09 14
Well, if challening Clark’s bullshit superleftism and white guilt is “mean,” then whatever. Amanda tossing him was the best thing to happen to Pandagon this year.
By: By Pandagonian on 2007 09 14
Well, if challening Clark’s bullshit superleftism and white guilt is “mean,” then whatever. Amanda tossing him was the best thing to happen to Pandagon this year.
1. With an “e” at the end, darling. Clarke. I know you struggle with reading, but do make an effort. It is only six letters.
2. Bullshit superleftism is the new champagne supernova.
3. Amanda didn’t toss anyone. We left.
I liked you better when you posted under your usual alias, moron. At least that way the other readers knew what was coming.
By: By ilyka on 2007 09 14
i dunno warren—how does your queasiness come out on the barf scale, compared to, say, trying to make a serious point or two, and getting a couple of nausea jokes back?
my nephew barfed all the damn time, for real, for three years, because of his treatments and his tumors. the take away lesson for me is, cleaning up real barf is an act of love and compassion. not feeling so compassionate about “ha ha kumbaya makes me queasy.” i must be humor impaired.
By: By kathy a on 2007 09 14
I would prefer that the discussion of Pandagon stop here, as blog comment wars are contagious, especially considering this is a thread that has been linked from the thread in P’gon mentioned above. Thanks all in advance. And thanks, Ellen, for the kind thoughts.
And as I think Belledame said recently, “don’t feed the troll” only works if the troll comments don’t stay. I left the first one, which insulted only me, because I like to at least tell myself I have a thick skin. Then he came back while I was out hiking. Further posts from “Pandagonian” other than a promise to behave will be deleted. As will any combative responses from any Pandagon regulars. Including me. (Constructive responses on non-Pandagon-bashing-or-defending topics, of course, are always welcome.)
(Incidentally, unless Moron has changed his MO and no longer posts always from the same IP and with a uniform email address, that isn’t Moron. Just to forestall any flying monkeys defending their honor.)
By: By Chris Clarke on 2007 09 14
ok, warren. i appreciate what you are saying, and want you to know it is not that i’m personally insulted—just tired of people missing the point about the real (unpaid, unglamorous) work of taking care of problems nobody asks to have. you are a decent enough guy, and mean to do the right thing. but you need to try out some different specs.
here is the deal: feelings aren’t enough. action is what’s needed for a good life, and a good death.
your makeup assignment, should you choose to do it, is as follows: when you hear of a friend, co-worker, or family facing a crisis, make a casserole and take it over. [or cook something fresh from organic ingredients; or order something good; the important part is, take the time and take it over.] listen to what they are saying—that part is important. if it occurs to you that something basic needs doing, gently offer to do that when they need it, and how they need it—do not push your views. don’t judge. don’t brag about doing it the one time, either.
that’s all.
By: By kathy a on 2007 09 14
That’s a good makeup assignment for more than just Warren. I’ve been remiss in that department too.
By: By Chris Clarke on 2007 09 14
You’ve been holding out on us with the superhero drawings, Warren.
However, it occurs to me that we’re up against that feelings/work dynamic here. Not that the boundary is razor-sharp: cheering kids up and keeping them occupied IS work.
But the advantage of doing cooking for someone is that they need to eat and it needs to be done and doing it is removing a positive burden. So perhaps, given a reasonable reluctance to impose your unorthodox tastes on people, you’d do something else so that they wouldn’t have to. Mowing the lawn. Being on call to take them to the hospital. Running errands. Doing dishes.
My brother-in-law got hit by a car a few years back, riding his bike in San Francisco. He took a little while to convalesce — he nearly died, and had tons of broken bones and worse: I’ll just give you the phrase “degloved gastrocnemius” and you can decide whether to look it up or not. After he left the hospital he was still essentially a temporary paraplegic for about six weeks, restricted to a hospital bed in our living room (his apartment is a second-floor walkup in the Haight Ashbury). And caretaking was a hot issue in the family, for various reasons having to do with politics between Becky and her mother, who was determined to take care of her son if it killed him, with Becky being his advocate and quite frankly the better caregiver from a “not rebreaking bones” standpoint.
So he was having more food made for him than he wanted, which is unusual for someone in his situation. He had FAR more company than he wanted: he avoids his family at the best of times.
I contributed to his well-being in two main ways. When he could spend some time in his wheelchair, I got him the hell out of the house and he and Zeke and I would meander slowly down to the bay, so he could get away from his mother for a bit and get some fresh air.
And I kept the urinals and commode clean. He pissed, I’d wait a discreet and non-intrusive length of time, then casually snag the urinal and go clean it. The cheering up was a good thing, but cleaning urinals is not optional, and my doing it most of the time meant someone else didn’t have to and my brother-in-law didn’t have to smell half-full urinal while he was trying to sleep or something.
That’s the dichotomy I think we’re looking at. Pleasant walks down to the bay, and cleaning out stanky pissjars. Both crucial. And guess which gender of person usually performs the second category of task. Affirmative justice in this instance is close at hand.
Also, you can just ask they person if they like chile rellenos con mole poblano or blackened tofu or whatever. Not so difficult. Ron has stories about hosting dinner parties in Berkeley where you’d need a relational database to catalog the food allergies/avoidances/dislikes of the guests. ONe person is easy after you do that sort of thing for a while.
By: By Chris Clarke on 2007 09 15
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