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Working Mothers

I spent all last week going back and forth to visit my adult son in the hospital. He was there for observation only, so no trauma was involved, as was often the case during childhood hospitalizations.

Some readers know about Daryl, but for those who don’t, very briefly: he was born with hydrocephalus, necessitating multiple surgeries, which later led to seizures. Now 44, he’s developed a new (for him) kind of seizure, so his doctor wanted to conduct this assessment, a high-tech procedure called telemetry, hooking patients up to machines and monitoring them 24/7. It’s not painful, just a pain in the ass: Daryl wasn’t  happy, to put it mildly, and because of his neurological issues he has low tolerance for inconvenience and an even lower ability to self-censor. In other words, he bitched a whole lot, mostly at me.

I rented a car to avoid using public transit going from the East Bay to SF every day. Whenever I rent a car I try to get a zillion things done, and I’d planned to do the same before and after each hospital visit–but on the first day I realized I’d forgotten what it’s like to spend seven and eight-hour stretches trying to keep a hospital patient amused–or even just being there: a kind of zombie-like mentality sinks in after awhile, and you’re lucky if you can keep your eyes open, much less go running about during off hours. I ended up going straight home every night and crashing in front of the television.

One good thing came out of this week: I am completely cured of wanting a car. I’ve been without one for four years now, and this week reminded me what a pain in the ass it is to drive in rush hour, rain, darkness, over the Bay Bridge; to pump gas, (never mind pay for it!);  and to hassle with parking (I got one ticket and dented the rear bumper crashing into a parking garage pole). And I don’t even have to worry about this car’s maintenance! I returned the thing this morning and felt good riddance, relieved that the insurance I paid $11 a day for covered the dented bumper.

The point of this rant, though, is this: I got some perspective on the so-called Mommy Wars between mothers who go out to work and mothers who stay home with their babies/children. My life experience includes all of it: by my count I’ve had 75 jobs, most of a secretarial nature, and I’ve also spent long periods of time staying home with kids. Additionally, I’ve had to maintain a more intense involvement with my son than is common for most parents of adults.

I am here to say that it is far, far more difficult, in every conceivable way, to care for children than it is to work outside the home.

I’ll go even further: in some cases work is a pleasure and escape from the demands of motherhood. Now that I work freelance at home, I’m absolutely thrilled today at the prospect of an entire week at my computer. No more jumping out of bed when I wanted to stay there, putting on presentable clothing and makeup, collecting the dozens of objects so necessary for a day away from home–lipstick, meds, reading material, change of shoes, plus whatever Daryl happened to need, etc.–then trying to remember where I parked the car the night before, crawling through traffic to the toll booths before finally crossing the bridge; driving around and around to find a parking space in the garage, getting a cup of coffee, standing squashed against other humans in an elevator up to the 8th floor; being greeted with a raging invective against nurses who can’t seem to find veins (Daryl’s arms look like he’s been in a boxing match), and starting the long daily routine of meals, doctor consults, helping Daryl to the bathroom, and on and on and on.

I know, it doesn’t sound that terrible in the telling; in fact, I could tell stories that’d raise the hair on your head, of when he was younger and in the hospital post-surgery, stories about those surgeries, and infections, and shunt failures, and arrogant doctors, and a frightened young mother. I could tell even worse stories about other people and their children. Last week’s hospital trip doesn’t really sound  so terrible. But it was.

As stated, I’m thrilled to be back at my computer. I hadn’t planned on blogging, but I found I had to vent before I could resume work on the book I’m currently ghostwriting. I apologize if this was as boring to read as to experience.

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Olbermann on Health Care Bill

Everybody! If you haven’t seen/heard  Keith Olbermann’s commentary of December 16th on the health care bill as it stands, go here and listen up. It’s the best piece of political opinion I’ve heard in a long time, certainly the best commentary on this legislation. WOW.

Health Care and Abortion Rights

Congress threw women under the bus again yesterday. The following statement from NARAL – National Abortion Rights Action League – explains it all.

As you’ve probably heard, the Senate is moving forward on health reform.
Unfortunately, the revised bill has some bad news for pro-choice Americans.
The Senate bill does not include the egregious Stupak-Pitts provision that you helped us defeat less than two weeks ago, but we are not in the clear.

A new provision demanded by anti-choice Democratic Sen. Ben Nelson is unacceptable. In short, the Nelson proposal would impose great administrative burdens on women who purchase abortion coverage in the new system and plans that offer it. So, where does that leave us?

Our standard has been consistent and clear: Women should not lose ground in the new health-care system.

We all recognize that the Senate bill includes other provisions that will improve women’s access to reproductive-health services significantly. However, the language regarding abortion coverage comes at too high a price for reproductive health. Thus, we must oppose this new Nelson provision.

On balance, that means NARAL Pro-Choice America will withhold support from the overall health-reform legislation until we see the final bill that both the House and Senate will vote on.

As this process moves forward, we will keep in touch with actions you can take to protect choice in health reform. Rest assured, Congress will continue to hear from America’s pro-choice majority.

This situation is  an unfortunate reminder that, despite our significant pro-choice gains in the last two election cycles, anti-choice lawmakers still outnumber our allies. We must work together to change these numbers, starting with the 2010 elections.

Nancy Keenan
President, NARAL Pro-Choice America

Update December 21st: More dismal news: Another feature of the Senate version of the health care reform bill is that it includes an amendment concerning sex education in the schools. Introduced by the Republican Senator Orrin Hatch, it would revive a separate $50 million grant-making program for abstinence-only programs run by states. This despite the fact that abstinence-only sex ed has been proven time and again to be useless, or worse.

Health Care and Insurance

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Long ago and far away, I married an insurance salesman.

I suppose I share some of the responsibility for my husband’s chosen profession. Pre-marriage the guy worked as a barroom bouncer, and throwing unruly customers out of bars wasn’t going to support the needs of our forthcoming baby, or even those of a middle-class princess like me. So when B. ran into an old high school friend who, with no college or special training, was making pots of money selling life insurance, it didn’t take much to persuade him to go into the business.

I had an immediate instinctual aversion for the insurance business, which at the time I couldn’t explain or articulate. At eighteen I knew next to nothing about how the world worked, but the notion of men buying insurance so that if they died their wives and children would be financially secure gave me the creeps. It highlighted my reality, the reality of all the middle-class wives I knew: we were helpless creatures incapable of providing for ourselves in any way, shape or form. I may have been young and ignorant, but inside I was already the person I eventually grew into: independent-minded, proud, and fiercely feminist.

This is how life insurance works: take someone you love, your spouse or sibling perhaps, and go find a stranger who’ll accept a really big bet that this person you love will die prematurely. To clarify: you’re betting he or she will die, while the stranger is betting they’ll live to a ripe old age. The whole concept is seriously creepy.

B. sold mainly life insurance, a booming business in those days—it was where the companies made their biggest killing—but occasionally he also sold medical insurance. My best friend’s brother-in-law bought a medical policy for himself, his wife, and their as-yet unborn baby. Six months later, the baby turned out to be twins. At five months old, one of the twins got horribly sick and died. The tragedy touched a wide circle of friends: none of us had yet experienced this kind of capricious evil. When the grieving parents submitted their hospital bills to the insurance company, they discovered that infants under six months old weren’t covered. Nobody, including my husband, had read the fine print. To B.’s credit, he busted his ass trying to help, and felt like crap when he couldn’t (but not crappy enough to leave the biz).

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As the wife of an insurance salesman, it fell to me to throw dinner parties for his colleagues, and every so often to attend conventions. I welcomed the conventions as escape from my stifling suburban life. While the men went to meetings, the other wives and I would lounge by the hotel pool or go shopping; occasionally the company planned little tours for us to places like glass factories or gushing geysers.

Much about these events disgusted me. I have never forgotten the first keynote speech I sat in on, where some older hotshot executive said he’d never known a successful salesman whose wife “asked him to pick up a quart of milk on the way home.” He pontificated on this theme for a good ten minutes. It was no accident that the wives had been invited.

I left B. after six years, two toddlers in tow. Friends could not believe I’d leave a marriage in which the sex was still good. My family couldn’t believe I was leaving a hard-working Jewish man and my lovely house (it was) house in Woodstockin the ‘burbs. When I refused to accept alimony (which I now heartily regret) my mother nearly had a heart attack.

But by that time I was a budding Marxist and hippie. When I drove my kids to their preschool, modeled on A.S. Neill’s free school movement, I was embarrassed to let the other parents see my shiny new Corvair, and I wouldn’t allow B. to pick them up in his Cadillac. I was conflicted and burdened by our growing pile of possessions; I wanted to give everything away and drive cross-country in a Volkswagen van. This B. refused to do.

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But I digress. My point is, from the first moment this country began talking about health care reform, I have not understood why politicians insist on keeping insurance companies in the process. Or why the dialogue always begins by saying X number of people don’t have insurance. It isn’t insurance we need, it’s health care. Throw the goddam companies out and start from scratch. A middleman only means another potential level of corruption.

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In this latest round of health care reform talk, President Obama insists we have to keep the insurance companies, when once upon a time he was in favor of single-payer health care. Why is everyone, from the most conservative Republican to the President, scared of the insurance industry? True, a few people aren’t: Howard Dean, Dennis Kucinich, a scattering of ngo’s pushing single-payer–but this is hardly a groundswell of support. I wonder what it would take; hundreds and hundreds of stories about the mercenary motives of HMO’s and insurance companies haven’t put a chink in their armor.

(For a really good assessment of why single-payer isn’t being embraced, as well as a list of groups supporting it, see an article by Michael Lerner in Tikkun.)

Ruth Bader GinsburgListening to the judicial hearings for Sonia Sotomayor, I began wondering about Judge Ruth Ginsburg, who last year had pancreatic cancer. I’m amazed she’s still around, because my experience with pancreatic cancer was when a friend’s sister, a dirt poor fifty-something woman who didn’t see a doctor for back pain because she couldn’t afford it, was diagnosed with the same thing. She died less than four months later. To quote a line from the poet Amiri Baraka,
Can you imagine anything more horrible than capitalism?

The Spirit Catches You

The Spirit Catches You and You Fall Down:
A Hmong Child, Her American Doctors, and
The Collision of Two Cultures
By Anne Fadiman
Farrar, Strauss and Giroux 1997 341 pp

As the title of Anne Fadiman’s The Spirit Catches You and You Fall Down implies, the book offers an alternative perspective of epilepsy, or seizures, as seen through the lens of the Hmong people. It also provides a fresh view of Western so-called civilization itself, particularly Western medicine.

When my son Daryl was newborn and diagnosed with a chronic condition, my husband and I gathered second and third and fourth opinions, taking him to every recommended neurosurgeon within a hundred-mile radius. We would sit in their offices, I as caretaker feeding or comforting my days-old infant while the men conversed. At some point during the consultation the doctor would measure Daryl’s head. With his meaty hand he’d push down on my baby’s fontanel; having been raised with fearful admonitions to never touch a baby’s ‘soft spot,’ I nearly fainted. I was convinced the doctors were mad.

That is the way Foua and Nao Kao Lee must have felt about the doctors at Merced County Community Hospital who tended to their baby daughter Lia when she began having seizures—but while I worried about damage to my baby’s head, the Lees worried about damage to their baby’s soul. In the Hmong culture, sickness is a signal of disturbance to the soul, and healing is a matter of tending to it. When did you last see an American doctor do that?

Even had the doctors who cared for Lia known about the Lees’ belief system, they probably wouldn’t have given it much weight. As things were, they knew very little about their patient’s family: not only did the Lees not understand English, but the Hmong culture is so far from anything remotely American, their doctors had neither the ears to hear nor the consciousness to absorb it. To them, as to many Americans, the Hmong are a “Stone Age” people, ignorant and superstitious. Certainly Hmong rituals and healing ceremonies are strange and arcane—but not any stranger than those of the Catholic or Jewish faith. All utilize symbols, whether it’s wine standing in for the blood of Jesus, wine drops spilled on a plate to symbolize Egyptian plagues, or a wooden bench transformed into a winged horse carrying a healer in search of a sick person’s soul. Why is it that the good citizens of the United States laugh only at the latter of these rituals?

Writer Anne Fadiman decided to look at American medicine through the prism of Lia Lee’s sad story. She discovered, and conveyed to readers, the richness of Hmong culture, devoid of sentimentality. Fadiman is careful not to imbue the Hmong with the kind of romanticism that European Americans tend to hold about Native Americans: she does not evade the fact that they can be extremely difficult and intractable. By allowing them full humanity, she brings them vividly to life in the same way a novelist does her characters—Spirit, though non-fiction, is as compelling as a good novel.

The Hmong came to America in the 1980s, courtesy of war in Southeast Asia. They’d been living in the mountains of Laos, to which they’d migrated from China. The Hmong never assimilate into the culture of the country they inhabit, and as a result they’ve been persecuted for centuries. Like the Roma or the Jews, they’re a migratory tribe without a homeland—but I doubt they ever felt as displaced as they did when they got to the United States.

Because they’d helped the CIA in Laos, the Hmong were promised they’d be welcome in the U.S.—but when the troops left, only the generals and hotshots were immediately jetted out of the country, leaving the rest of the populace to fend for themselves. With the Laotian army hunting them down as enemies of the state, Hmong families set off on foot, carrying whatever they could manage. Many, particularly the old and the young, died along the way. Most possessions were shed, too heavy to carry, on the days-long journey. When they arrived in Thailand they were placed in refugee camps, where they awaited rescue. Those finally taken to America were ‘resettled,’ without regard for family cohesion or transferability of survival skills, in Detroit, Minneapolis, Utah, Vermont—the Hmong were distributed all over the country so as to not unduly ‘burden’ any one locality.

The Hmong are a family-intensive culture. They tend to have large broods of 12 or 13 children, who they deeply adore. Disabilities are viewed as a consequence of parental transgression, so disabled children are treated especially well as part of parental atonement. Families are organized into clans. Marriage within one’s clan is strictly taboo, so to live among one’s clan only can be problematic. They are, however, accustomed to seeing relatives on a daily basis. The diaspora of the Hmong represented unspeakable hardship—which they resolved with what they call their ‘second resettlement.’

A Hmong family, bewildered by urban living, would pack up a hastily purchased jalopy and drive off, looking for a spit of land hospitable to growing vegetables and the herbs necessary for their healing rituals. They’d end up where all pioneers do, in California, and send word to relatives in Detroit or Chicago to come join them. Eventually, pockets of Hmong were clustered in several locations around the country. Of these, Merced, California, where the Lee family settled, is one of the largest.

About one in every six residents of Merced, formerly an all-white rural area, is now Hmong. As they’ve done throughout the centuries, their culture and community thrived, parallel but not assimilating to, the dominant culture. One way they had to assimilate, at least partially, was medically: with 80% receiving government assistance, social services closely monitor these families. American social workers do not have a high level of tolerance for cultural difference, and many Hmong practices, like gardening on the living room floor, or animal sacrifice, put parents in danger of losing their children to foster care—an unthinkable consequence that befell Lia Lee for a short period of time.

The Hmong had heard about Western medicine even before arriving on these shores. They approved of antibiotics–swallow a pill and get well in a week—but not much else. Surgery was anathema, since cutting the flesh or removing organs risks the flight of the soul. When their daughter Lia fell into the hands of the medical establishment, the Lees suffered deep agony over every procedure, from IV insertion to spinal taps. Reading this, I couldn’t help but remember my own experiences: the pushing on the fontanel, which to this day still makes me queasy; the insertion of dye into my baby’s head so fluid blockage would show on an X-Ray; starvation prior to surgery; and the five-hour operations: although I didn’t actually see the latter, I did feel them. I know what the Lees endured—and for them it had to be a thousand times worse, what with their inability to understand the doctors’ explanations, and a belief system opposed to any cutting of the flesh. Several studies of the Hmong show that they consider “difficulty with American agencies,” social as well as medical, more problematic than their war memories.

Fadiman explores the interactions between the Lees and their daughter’s medical caretakers in exhaustive detail. Whenever Lia suffers a setback, the Lees blame the doctors and their methods. The doctors accuse the Lees of noncompliance when they fail to properly dose Lia with three different anti-convulsants at the correct times, not knowing that the Hmong don’t even use clocks. Fadiman presents a balanced picture, blaming neither the family nor the hospital, but cultural barriers, for what goes wrong—and eventually things do go terribly wrong. By the age of four Lia is brain dead. The hospital hooks her up to feeding tubes, expecting her to die within days, but the Lees insist on taking her home, where they disconnect every tube and treat Lia as a favored family member. They take turns carrying her around on their backs; like a mama bird, Foua pre-chews her daughter’s food and feeds it to her orally; they sacrifice pigs in healing ceremonies; and Lia sleeps with her parents every night. To the astonishment of the medical community, Lia doesn’t die: years after being declared brain dead, she’s still alive and still lovingly cared for by her mother and siblings. Lia’s medical condition hasn’t changed. Her father died in January of 2003.

The Spirit Catches You and You Fall Down: 
A Hmong Child, Her American Doctors, and
 The Collision of Two Cultures widened my perspective on medical practice and cultural differences. I highly recommend it.

 For the latest available information on Lia, see comments below. If anyone has any more news, please do share it in the comment boxes.–MS.

Read from another blog on this book

Here are resources on all things Hmong.

Just discovered: A Hmong Woman’s Blog