BE HERE NOW, ONLY BE SOMEONE ELSE

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Last night my band “The Deadbeets” had practice — coming off of a huge and dizzying world premier concert in front of 500 screaming and applauding fans – okay, they were elementary school kids. Our first gig – at the Lobo Theater six blocks away from my house, where Monte Vista Elementary School students march in for assembly. And there we were – the Deadbeets, old enough to be their grandparents. They were a generous audience.

Like something out of “Spinal Tap” we were rock stars for a day.  And last night, as my partner walked up the driveway, one of the neighborhood kids who was at the concert noted the six pack of beer he was carrying and said, with awe and adoration, “You guys are having a practice tonight, aren’t you?”

Since the slow and tender beginnings of this band of aging baby boomers, at my 57th birthday party when I asked that all the musicians I knew come and jam, our making music together has been a miraculous bit of fun and comradery. I have felt like I’m living in an old fantasy, at the same time that Stevie Nicks is returning to the stage at 62. Then at last night’s practice my rickety sense of well-being imploded.

I’d had those nasty band moments before – feeling slighted when my singing parts got whittled down. At the time, I admitted to my band mates that I felt like saying. “You fucking sing the whole fucking song, then”  — to a dear, longtime friend who has actually had a professional musician’s experience and was gently suggesting that she sing more of the song than I was singing. This cliche moment in the world of rock and roll was not in proportion to my star quality.

I sort of got over that. But it was on the books, to my chagrin.  And we went on to do the elementary school concert with that particular song put aside.

So we were all high on the fact that we actually didn’t suck on our first gig and practices were set for the next gig – the graduation party of one of the band mates.

Everyone was tired but  happy and ready for hard work and snacks.

But last night the crash came for me in two steps:

First, I saw the video and pictures of the concert. I am the fattest and most in need of a face lift chick on the stage. Okay, I’ve had years of experience being disgusted with pictures of myself, horrified that I could walk around in public with the drooping face and fat ass I inhabit. But zooming in on my image in those pictures was not an uplifting experience.

My response to that was to be a little fragile in the core. I ate none of the snacks that had been part of the joy of band practice – no pretzels, no popcorn, no chips. Water for me. Shallow water.

Second, the much thinner than I accordionist announced that her son had given her a keyboard very much like mine and the band erupted in elation over the prospect of her playing it. The already fragile core in me felt twisted, like someone was trying to wring the juice out of it. I’m the keyboardist, who already is clearly not a very good singer or much to look at, and now there’s a rallying cry for another keyboardist to play.

“Suck it up. Oh, please suck it up,” I’m saying to myself.

And I wonder what the dulcimer player would feel like if I said, “Hey, I just bought a great dulcimer and want to play it.” She’s another thin and hot looking woman, and of course a better person than I am, so she’d probably be okay with it. She’d probably be enthusiastic about sharing the dulcimer experience with me.

I’m a bad person in two distinct ways around this particular fall into a depressive abyss: I obviously am not a good enough keyboardist to stand on my own AND I’m so insecure and self-centered that I don’t want to share one note of my territory with someone else.

Someone get a gun and shoot me.

Here are my choices: get a gun and shoot myself; slink off and pout; smile and proceed as though it’s all good (when that’s not remotely how I really feel); quit the band because I obviously can’t handle normal human interaction around creative cooperation; or be such a fucking great goddam keyboardist that no beloved bitch will be able to touch me, AND lose 30 pounds and get a facelift before our gig in the nursing home.

Oh, I’m tired just thinking about it. The whole experience is a mirror held up to my least wise self.

I want the fun back. I want the feeling that we’re in it together and generous and respectful of each other’s efforts and shortcomings and passions. I want all the competitive insecurity in my head to transform into boddhisatva peace and love.

The only refuge for me is my other practice – my Buddhist practice. The only refuge from all this internal bullshit is to sit on the cushion and breathe, not to cure myself but to try to wake up more deeply to the obvious pain of relying on the ego for happiness and peace, to the need to accept it all.

You cannot have a frail ego and play in a band and keep it fun. Go ask Alice.

I’m grateful for the wonderful, awesome fun we had, but I’m no longer an innocent. I am an overweight 59 year old woman whose talents and attitude aren’t strong enough to keep the fun going for me or any of my awesome band mates.

We all hit the wrong notes and we all die; perfectionism and delusions that anything is permanent make everybody suffer. I need to really get that.

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INVISIBLE WOMEN

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When I was a teenager in the 60’s, I was hot. Yes, indeed. I went braless, wore halter tops and mini-skirts; I had long red hair and what my mother called “bedroom eyes.”

My mother in her day was a classic beauty, though she was embarrassed that she had large breasts. I had neither the big breasts nor the stunning face of my mother. But men looked at me, and when my mother and I went out together, to the grocery store for example, she’d walk behind me and watch how men would turn and look as I passed. “When you get to be my age,” she said when she was five years younger than I am today, “you’re invisible.” She was amused, not bitter.

I used to pity women over forty who seemed pathetically doomed to invisibility, uncool, unsexy and basically worthless. Even as a feminist, somewhere deep in my very shallow soul – the waters barely sloshing around my ankles at the time — I believed that to be sexy as a woman was more valuable than say, winning the Nobel Prize. But to be sexy AND win the Nobel Prize – that would most definitely be cool.

Now 58 years old, I stand up in front of five classrooms full of men and women. In that sense people are forced to look at me. And I’ve got a partner, whose soul’s waters aren’t so shallow as mine were,  who loves my aging self. So, I can’t complain about being invisible. But I am not remotely hot in any public way, and I don’t see any chance of winning the Nobel Prize unless there’s some apocalyptic occurrence and the only person left to receive the prize besides me is George W. Bush.

My mother prepared me to slip into oblivion as a hot chick, but she didn’t prepare me for the gritty details of menopause. So, if there’s anyone out there who would rather pierce their eyelids with a paperclip than read about hot flashes and dried up sexual organs, you’d better stop reading now.

Okay – what my mother didn’t tell me is that taking hormones to ward off  the discomforts of menaopause increases your chances of getting breast cancer. Learned that one. I had to go cold turkey on prescription hormones, which changed the décor of my bedroom. I now have a remote controlled fan near the bed. When I wake up, sometimes three or four times a night, with an overwhelming urge to pee, drink water and kill someone; and with the sense that invisible monkey men are plastering my upper body with heating pads, I throw off the covers and click on the roaring fan. I, like many women, have found myself standing in front of the refrigerator at 2:37am trying to put my head into the freezer, or flung open the front door and stood out on the porch when it was 2 degrees thinking, “Ahhh, now that’s refreshing.”

Many women have it worse than I do. My hot flashes are waning. During the day I hardly notice them. But when one does come on, it is often attended by a spike in irritation with anything – any damned thing; the cat, the computer, the sound of birds chirping, the fucking tea cup with the fucking green tea bag in it. For a few seconds I’m in the mood to rip up whatever student paper I’m grading or tell the cat that she is NOT particularly cute or worthy of being given her foodie-wooedies. Unlike the men who collect automatic weapons and regularly fantasize about shooting innocent people, menopausal women generally understand that if they wait a minute or so, they will return to an acceptance of the tedious and unjust world we inhabit.

Now as to sex. I’m going to, for the sake of my loved ones, generalize here. Many women who have been through menopause have this choice: watch their partners troll for women thirty years younger, watch them find that cute waitress who appreciates a man with a big mole growing on his face and a bank account,  and then proceed to be bitter crones; or pony up, so to speak, and grab the KY jelly. Pain occurs. Imagine, if you are a man or if you are still young and juicy, that someone wants to put a regular sized dinner table candle made of sandpaper up one of your nostrils and move it around for several minutes. Some adjustments need to be made, to the nostril, the candle and the length of time involved creating friction.

I’m glad that I’m a woman for a lot of reasons. For one thing, a lot of old men continue to have the same sex drive they had when they were twenty, but they are paunched out and balding with yellow teeth, small sagging breasts and hearing aids. That must be kinda frustrating. Women’s libido dwindles at about the same time they start preferring comfortable shoes. The horror occurs when such women still want the attention a sexy woman gets; they get cosmetic surgery or buy clothes at Urban Outfitters, showing cleavage that looks like its made out of crepe paper. There is no dignity to this.

Dignity has a sense of humor. Dignity finds it interesting that if you slouch just enough you can look like an aged chimpanzee with sagging breasts. Dignity goes to the gym to be healthy not to look  twenty years younger. Dignity continues to get naked and be intimate, with creative adjustments. Dignity revels in a good meal, good friends, good art, and the discipline not to be bitter about the most natural thing in the world – getting old. Dignity has added depth to the soul and swims in naked solitude in a large and shadowed lake rather than standing in a “My LIttle Pony” kiddie pool with a thong on.

I think it would be darn fun to walk around with my mother now, both of us invisible. We’d have a good conversation about literature, go to a movie in the afternoon and eat popcorn and Jordan Almonds, note the ridges on our fingernails, and nobody would bother us. Someone would be waiting for us to come home, but nobody would bother us.

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LSD versus Oxycodone

4032430931_706ae5796dMany of us baby boomers rebelled against the bullshit we detected in our racist, sexist society. We rebelled against a war we knew was a brutal lie. We advocated for civil rights. We demanded equal rights for women. Now we’re getting old. What will we demand for the elderly before we are too feeble, too sick to demand anything?

Were our outbursts in the sixties successful? Of course we didn’t produce the utopia or even the socialist system some of us envisioned. But we did make enough noise to inspire some progress in policies and lifestyle, including organic food choices and yoga classes.

We failed in many ways because we were up against a formidable opponent – our inner and outer capitalist. Corporations have succeeded in marketing a toxic lifestyle and we continue to buy it – from the two huge white trucks I see parked across the street in my neighbor’s driveway to the hormone replacement drugs that I took to alleviate hot flashes, drugs that undoubtedly contributed to the development of cancer in my breast.

If there’s fight left in us, we need to take on the healthcare system, not in terms of HOW we pay for it, but in terms of WHAT we pay for. Those of us who have made it to senior citizenship need to continue, or in some cases resurrect, our demand for honest and intelligent assessment of institutions and of our own complacency and collusion with corporate propaganda.

Consider pharmaceuticals. As I said already, I was poisoned by hormone replacement drugs because I gladly bought the assumption that menopause was a bad thing that my body shouldn’t be doing. I know that many women in my generation did let their bodies do what they were designed to do and adjust to the changes. I, unfortunately, had to be scared into stopping the toxic intake of phony hormones; and lo and behold, my body is adjusting. If only I’d had the fortitude to endure some discomfort – hard to do in a society that considers any discomfort a failure.

We need to beware of the tendency to pop pills. I truly believe that the LSD I did in the 60’s and 70’s was safer than many of the prescription drugs people are taking daily now. I’m glad I did psychedelics. I don’t recommend them to others, but I have no doubt that my mind was opened up to insights that remain powerful and that I otherwise might have missed.

The drugs that got people in big trouble then are the same drugs getting people into trouble now – addictive stuff. So, the first thing we need to be wary of is the prescriptions we are given for pain. Doctors and the so-called legal drugs they prescribe are more responsible for addiction than crack and heroin dealers.

Addictive drugs, such as morphine, are crucial for end of life care, when someone has a short time left and should be allowed to take whatever is needed to have more than pain to focus on.

But we need to be aware that pain medication, even non-addictive medicine like Advil or Tylenol, can cause harm, for example to kidneys and liver. Doctors may tell you to take them regularly for conditions such as  arthritis, but we need to be informed about the damage they can do.

Right after my lumpectomy, my surgeon insisted that I get a prescription for hydrocodone. I told her I didn’t want it, but she said I needed to at least have it available if I did have horrific, sickening, writhing, hellish pain. Okay. So I got a bottle of it and ended up not using it. Not because I’m stoic, but because I didn’t have a lot of pain.

Unfortunately I do sometimes get seeringly painful, horrific, hellish headaches. A couple of weeks after the surgery I got one. I thought, “Hey – I’ve got those hydrocodone pills.” I took HALF the dosage suggested and the rest of the day I was so sick I couldn’t eat a cracker without vomiting. What if I had taken the whole recommended dosage right after surgery when the general anesthetic was still kicking around?

Doctors, often lobbied by pharmaceutical companies, do NOT always know what’s best for us. We need information. We need to educate ourselves about drugs and make our own decisions. We need to take advantage of the progress that has been made, such as the willingness of insurance companies to pay for acupuncture treatments.

If you’ve done hospice work, if you’ve been to any nursing care facility, you know the enormous amount of drugs people take. No doubt some of them are necessary. But we need to understand that many of the drugs that are given to the elderly and sick are prescribed to treat the side effects of another drug. For example, pain meds often cause serious constipation, and thus stool softeners and laxatives are required. (When I was prescribed hydrocodone, I was also given a prescription for a stool softener; that wasn’t a good sign to me.)

End of care life should include all the palliative methods available, including pain meds. And an effective drug for chronic debilitating conditions is a blessing.  But we, the patients, need to be informed enough and respected enough to decide for ourselves what risks we are willing to take.

In many cases the elderly are not able to make clear decisions, because of dementia or some other condition affecting mental acuity. It is so disturbing for me to see old men and women sitting in wheel chairs in nursing homes, opening their mouths like baby birds to be fed pills whose names and purposes they don’t know.

Before we get to that point, those of us who demanded that women and minorities have rights need to insist on informed choices in treatment, not just financial coverage.

There are plenty of role models, like my 84 year old neighbor who spends much of her day in her stained glass workshop, invites people over to play pool with her, and rides an exercise bike while watching the news. For years she has refused to fill prescriptions for drugs she didn’t think she needed.

I know of another woman in her eighties who had leukemia. A woman who got a degree in chemistry in the 1930’s, one day she informed her family, with her wry humor, that realizing she wasn’t even enjoying Ben and Jerry’s ice cream any more, she was going to stop life support measures. She died peacefully with her daughter by her side.

And the Gray Panthers are still a thriving group, though they don’t get much press. Here’s the website: http://www.graypanthers.org/. Their vision statement: “Create a humane society that puts the needs of people over profits, responsibility over power, and democracy over institutions.”

I will do anything I can to not spend my last months in a nursing home or hospital. And I don’t want the focus of my life to be one of those big pink plastic boxes with compartments for the days of the week that each holds a pile of pills. I hope to die looking at the finches in my yard and listening to John Coltrane’s “A Love Supreme,” having just had a bite of chocolate cream pie.

I need to continue working on my own psyche so as not to be muddled by a fear of death or old age. I need to remember that it is my choice not to take a pill, to get a second opinion, to endure some disappointments and pain. And it is my responsibility to use whatever mind is left to me to understand such choices and to insist that they be respected.

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Focus on the Breast

AmazonvonStuckSmallOkay – here goes the ubiquitous cancer blog I said I wouldn’t write. I suppose it was inevitable.

Last November I had a breast tumor removed which turned out to be a rare kind of cancer that doesn’t respond to chemo or radiation. At least I could skip that routine. Though the margins were clean, the surgeon wanted to go in again and get more of the peripheral tissue, a somewhat complicated task as the tumor was close to both the chest wall and to the skin. With a second opinion in hand — thanks to the kindness of strangers whom my brother and nephew and his wife (all awesome doctors) got me in touch with, I opted not to do the second surgery and wait six months to check on the breast with ultra-sound.

At that point six months seemed long away. I had  beloved and annoying students to attend to with creative excuses for not handing in research papers; I had remarkable friends to play with and talk to; I had the troubles of others that needed help, including a dog that had to be put down.; I had the support of my family, the reliable ground I go to; and I got to go on a trip to Greece with my significant other.

Unfortunately, the gods at Delphi had split, the oracle having predicted tour buses and plastic water bottles.

Always, after everything else had dissolved into the past tense, I had my zen practice. But still, many of my meditations were what I call “focusing on the breast,” especially when the nerve damage from the lumpectomy was causing some pain. Looming always, the thought of the follow-up for a while wasn’t as loud as appreciation for having six months to continue my life with some normalcy and a greater appreciation for whatever health I had and for the people that make me laugh and let me cry.

Many good things resulted. I found a deeper commitment to my meditation practice and an old icon from the past whom I hadn’t yet dipped into, Krishnamurti, whose devotion to freedom from bullshit is as pure as it gets. The gifts others gave me were many; I’ll list a few with the names though many of you won’t know who these people are: Dianne and her hilarious and reliable affection who inspired me to watch Bullwinkle and Rocky re-runs and Marx Brothers films; the call from Ian which opened with his question, “So how are we going to deal with this?” – no avoidance,no pity, no platitudes; the birthday spent with Ian and Vanessa at the pool hall where I dared to have a shot of Bushmills; playing music with the “We Suck” motley band of aging comrades; and Carson, an ex-student, present knight in shining armor always willing to put an arm around my shoulder. (I just watched him play in the “Hoop it Up” fest, where I found myself yelling various helpful words such as “Focus!” having promised not to say any other “f” words.)

The “This happens to other people” cliche manifested as me having thought I was the one who took care of other people who had cancer. I think a lot of caregivers go into their work in part to define themselves as the non-sick. Despite my insistence that hospice caregivers stand before the people they’re helping with the clear knowledge of their own mortality, I sat before my doctor when she told me the tumor was malignant, staring dumbstruck into her eyes waiting for her to say, “Just kidding.”

Cancer is scary. It’s most scary to me not because it’s potentially fatal, but because it implies a need to surrender to a healthcare system that seems to me to be often heartless and even inept. It implies a period of dependence on others, some of whom say they will be there for you and then judge your behavior and critique your moods; there’s also the possibility of debilitating pain and a loss of one’s healthy and whole body; and worst of all is the pity of others. Unlike compassion, pity is a patronizing insult added to injury.

So now the thing I thought was way in the distance, the follow-up “look see” is days away. I cannot know the outcome. Even after the ultra-sound there’s a good chance that there will be no definitive insight without further tests, further waiting.

I am not alone. There’s plenty of cancer and other scary shit going on for people. I know all the zen approaches, and they are important to me: acceptance, freedom from focusing on the self, living now – not in some illusory future. I am very grateful for all that wisdom. But I’m still scared. Not enlightened yet except for in rare nano-seconds. Writing the next novel seems irrelevant and impossible right now. I’m wandering lost; I have wander-lost.

And pathetically, I’m glad that at least I’m losing weight. Some stupidity never ends.  But I have a new appreciation for my breasts.

images(Recently Virginia tried to change the state seal, covering up the exposed breast. Intelligence prevailed.)

P.S. The test results were very comforting — now to be used as a baseline to track future changes. I am relieved, grateful and unable to get annoyed about anything!

LOVING WALDO AND HIS TURDS

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I don’t think we need criminal behavior or sex scandals to ruin people’s reputation. All we have to do is tape them in their homes alone with their pets.

Just now I was talking to Waldo, my beloved Australian Shepherd, and I repeated this pithy question several times while rubbing his head: “Did you do-do outside, do-do head? Did you do-do outside, do-do head?”

Waldo has had over sixteen years of this kind of babble, which includes songs such as “He’s a Doggie Doodle Dandy…” and “Waldo’s got a doggie door, don’t have to wait for me no more, uh-huh.” This last one inspired the idea of writing an entire musical about dogs, aptly named “Dogs,” to complement the outrageously successful but clearly feline-centric “Cats.”

The “do-do” outside thing has a point to it. Really. Waldo, like many dogs his age, has bad arthritis. His back end has become a stranger to him. He has a hard time getting up and down and walks like he has a loaded diaper on. That’s the problem. He doesn’t have diapers, because cleaning up what they would mash around on his hairy butt would be worse than picking up the fairly solid and contained turds that he leaves around most mornings. He has no idea of this indiscretion, and I try to protect him from realizing just how far from his own hygiene standards he’s sunk. Why put shame on top of blindness, deafness and arthritis? So, when by chance he happens to stumble outside before the turds come out, I celebrate with him. (Because of the deafness, I have to chant the “do-do” and other phrases fairly loudly and close to his ear.)

Waldo still loves to eat; maybe he lives to eat. Hence the continued production of feces.He is motivated to struggle up by the scent of the hot dog pieces I put his pills in every morning. Sometimes I have to lift him up because he’s gotten away from the runners that are strategically placed all over my house to give him traction. When he slides down, he gets splayed out. He’ll give a couple of cockroach-on-its-back tries at getting up but soon realizes it’s futile and puts his snout on the floor and stares at whatever his eyes can still see. That’s when I lift his 52 pounds up and place him on the nearest rug, which is both troubling and fun to him, kind of like a kid being danced around by a drunk father – there’s something both scary and thrilling about the attention. If this happens in the morning, there will inevitably be a turd left behind, I suppose due to the pressure put on him when I lift him and the excitement of it all.

A lot of people don’t like to deal with shit, no matter how neatly and compactly it is delivered.  Such people should never have babies, pets or beloved old or sick people to care for. Shit doesn’t bother me. Throw up has no redeeming qualities, and piss, especially cat piss, deposits a rank and saturating stench that discourages one from entertaining guests from cleaner homes. But few could guess how much dog crap I’ve plucked from the floor. (Well, I guess those who read this will now know.)

A few months ago I was teaching my morning English class and smelled dog shit; for some reason, the stink increases when it gets on the bottom of your shoe, and then it’s definitely rank and distracts from discussions of, say, an essay by James Baldwin. I laughed and told my students that the smell in fact came from the bottom of my shoe, which I removed and placed gingerly in a distant corner. Then I taught the rest of the class before hobbling to the bathroom to clean off the ground-in crap in the treads of my shoe – always a challenge.

When I was a kid, getting into a car with other kids to go somewhere and having dog shit on your shoes was one of the most humiliating faux pas one could imagine. It inspired disgust and ridicule, which I was already fighting against due to various impediments such as crooked teeth and glasses. I’m glad that I’ve transcended at least the stepped in dog shit shame. And I have Waldo to thank for it.

I have a lot to thank Waldo for. And I’m going to tell him, saying something like, “You’re a good old man dog, yes you are. Mr. Wally is a good old man dog, yes he is. Ooooo, what a good old  man dog Mr. Waldo is.”

HORNED-TOADS AGAINST THE HEART

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Frank is a 29 year old Navajo man who’s dying of AIDS. I spend time with him several days a week at the near by hospital. It’s part of my volunteer work, and I’ve been reading poetry and Coyote stories to him, coming to understand that he’s smart and funny, not to be toyed with or patronized.

Walking into the room of a very sick stranger requires some combination of courage and audacity. Who the hell am I to barge in? Who is this middle-aged white woman?

Frank has a private room and it’s small like a cave. I’ve come to like it. Hospitals usually seem like the hell realm to me – no place to relax or rest, full of noise and disaster. But Frank’s room is down a hall that’s not too busy, and there’s white noise in there, and he keeps the lights low. He’s hooked up to a lot of stuff – about three machines on wheels with red lights and numbers and tubes going into his arm. He has to take all this with him when he goes to the bathroom, including something that goes up his nose. He’s also hooked up to his iPod from time to time.

One of several inspiring things is that Frank is in charge of all this, sometimes telling the nurse how the equipment works. Quiet and weak, a lithe and dark young man underneath a pile of blankets, he has come to seem to me more like some wounded potentate than like a patient. He laughs and smiles, a great smile – big broad mouth and something metal shining on one of his front teeth. His head hangs a little and his voice is soft; the disease has been an exhausting foe. He has to cough up phlegm into a vacuum tube and he’s slow moving.  But he’s fully present, even after getting the pain meds.

A couple of days ago he was listening to some Navajo chants on a CD that the formidable woman who runs the program I volunteer in brought him. In the little cave of his room, lights dim, we listened and I asked him if I could read a few Coyote stories that I’d brought. I read the one where Coyote is dancing wildly in the dark with what he thinks are other dancers by a lake; Coyote is thinking that he’s really cool, a great dancer. But as the night wears on, he can’t believe the other people aren’t quitting. He keeps dancing away, not to be outdone, until he can hardly lift his arms or feet, continuing to think to himself that he’s really going to impress these people. Finally when dawn comes, he looks around and comes to find out he’s been dancing like a fool in the middle of a bunch of bulrushes blowing in the wind.

Frank and I find that amusing. Then Frank starts telling me about Canyon de Chelly (pronounced “Shay”) near where he’s from; he draws a map of where it is in the Four Corners area where New Mexico, Arizona, Utah, and Colorado meet.

For some reason, and I suspect it has to do with the unseen entities that are enticed to play with sincere and strange encounters like the one Frank and I are having, I think of horny-toads. It occurs to me that 32 years ago when I moved to New Mexico, I saw a lot of horny-toads. These animals are very cool in my opinion. They have round squat bodies about the size of a child’s palm, spikes all around their bodies, little lizard legs, and a wide dragon-like head. My cats used to try to mess with them, but never could quite comes to terms with the spikes and some noxious red liquid they excreted. But it’s been a long time since I’ve seen one.

Frank said to me, “Yeah, horny-toads, we used to call them grandpa. You pick one up and place it over your heart and it makes your heart strong. And when you put it back you have to put it down exactly where you found it.”

I’d never heard that story before.

After visiting Frank, I went to the bookstore and got a book of photos of canyons in the Four Corners area to take back and show him, so he could tell me about the places in it, like he told me how to pronounce Navajo words in the poetry I was trying to read.

But when I went in with the book today, Frank wasn’t doing well. He was in a lot of pain. We only looked at the pictures a little, and then it seemed better to just be with him.

I wondered if I should leave, if I was too much a stranger to share the intimacy of terrible pain and weakness. I asked him if I could stay until the nurse brought the pain meds, and he said, “Please do.”

During a respite, we talked about our families, I read a couple of Joy Harjo poems and I did some puttering around for him, feeling like an idiot because I had such a hard time hearing his weak voice. I hated having to ask him to repeat himself when it took all his energy to speak in the first place.

One of the things that got him to smile was a story I told about my brothers giving me “Indian burns.” It amused us both that this cruel twisting of the skin, done by thousands of white boys to their sisters throughout the mid-twentieth century suburbs of America, was attributed to Native Americans – kind of like the innovative European tradition of scalping, which came to be standard behavior for Hollywood Indians.

I want to thank my brothers for giving me stories to tell Frank. Suffering sometimes has its reward.

But Frank’s suffering just seems pure cruel to me, and I hate it.

As I was walking my bike home, I could feel the urge to cry, but refused to make Frank’s suffering my drama. I told myself, “Hey, this is the work you signed up for. You start sobbing about it and you’d better switch to bake sales.”

Respect. That’s what I want Frank to get. I’ve lifted him up and put him against my heart, but I need to always put him back where I found him.

April is the Cruelest Month

 

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          My son died nine years ago, April 9. There’s some nine thing going on (this also being 2009).  I’m not doing very well. Who knows why this year seems particularly bleak to me. Some years aren’t so bad.

          The gory details, which are never far from my consciousness, are that he was crossing a one-way street on a sunny Sunday, trying to get home from work around noon to talk to a girl on the internet, someone he was infatuated with. He looked the wrong way, stepped out into the street and was hit by a GMC van. He died instantly, as he was being held by a stranger who saw the whole thing and ran into the street to cradle him. This stranger’s action is the most soothing memory I have of this horror. 

            The first months after Aaron’s death, everything was yellow. Really – there seemed to be a yellow light around everything. I had enormous compassion for people, knowing for the first time that really horrible shit happens. My eyes were opened to human suffering as they had never been before.

            Never did I consider going on meds.  I wanted the raw experience of grief, because I wanted to be with my son. I didn’t want the only connection I had with him, grief and awe over his transition to the void, to be diluted. I sought out other parents whose children had died, and found no groups that did not gag me with talk about angels and being with the Lord. I tolerate anyone’s methods of dealing with crushing tragedy, but I felt it was an insult to my son to drag his essence into  a world that seemed to both of us as the desperate product of wishful thinking. I left these poor parents to their own rituals, to smile about how God called little their little angels home. Aaron told me once that the only higher power he believed in was death. Stunning wisdom.

            I chastise myself this year for falling down the grief tube and coming out the other side with a puffed up face and a whole day gone. Shouldn’t I be used to my son’s death by now? Shouldn’t I have moved on?

            I have moved on. I’m in my 23rd year of a teaching job I love; I write novels and plays; I have great friends, most of whom don’t envision me lying on the floor one or two days a year weeping and calling my son’s name. Who wants to know such things? When I was in school, no one told me that  Mary Todd Lincoln was mentally ruined by the death of her children. Her depression was always taught as a weird defect that was a ball and chain for her beloved husband (who, by the way, was assassinated in April.) It didn’t dawn on me until my own trauma that, “Hey, maybe the woman was depressed because her children died.”

            The truth, of course, is that children died a lot in the old days before antibiotics and such. Only recently have people in wealthy countries seen the death of a child as deviantly odd, except for in war zones. And when the child belongs to a family that speaks a “foreign” language and has a non-Christian belief system, well, what did those mothers expect?  Well, I suspect that no matter how common death is, even for those who believe in Jesus or an afterlife with 72 virgins, the loss of one’s baby has always been sickening and damaging.

            My 18 year old son who loved Ska bands like the Mighty Mighty Bostones and Jimmy Cliff’s reggae classics, is most likely not sitting beside Jesus singing “How tender is thy love, oh Lord.” Maybe someone else’s little angel or dearly departed gramps is doing that; hey, maybe we all get what we believe in when we die. If you want to hang out with those women who hold their hands up and close their eyes and say, “Thank you Jesus,” that’s your business. As Mark Twain said, “I prefer Heaven for climate, but Hell for company.” If Aaron’s essence is anywhere, it’s where people are joking around and eating pizza, and I would look for him there, no matter how hot it gets. 

            Actually having no belief in a heaven and hell other than the ones we create for ourselves in this life, I’m left with “I don’t know,” and some interesting experiences with other theories about the after death process. My best guess is that our parts get recycled, and that may include mental and emotional parts. And then there’s always the infinite void, which may or may not have a buffet.

            The most important thing one learns in hospice work is not to impose one’s spiritual views on others, and not to show any disdain for theirs. Dying people and their families need whatever they can muster to not be crushed by their trauma. And I would say the same thing about grief. We should not impose our own notions of how long or how hard someone should mourn. On the other hand, I understand that the howling sorrow I can lapse into once a year or so is more and more a private matter. I don’t want to unload it on others, but I can write about it, and hope that it will reduce the shame or judgment other grievers heap on themselves for “not getting over it.” Some things you do not get over – not with meds, not with therapy, not with the Bible and not even with time. It is not weakness. It is a part of life many want to pretend does not exist. And transforming sorrow into art or compassion for others, or, if you’re really lucky, gratitude for what you did have and do have — those are possibilities that can give some hope. But this shit is hard.  

            So if you believe in Heaven and you run into Mary Todd Lincoln tell her you understand, and that she wasn’t just some burdensome crazy lady. She was a woman who saw the corpses of her own children. 

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New Magic in a Dusty World

medd_01_img0008.jpgMy father said to me as we walked arm in arm, slowly down the hall of an upscale nursing home, “I’m a dead duck. I don’t have anything to live for, and I’m afraid to die.” He’d been widowed twice, had been too abusive a father for any of his children to take him into their homes, and was slowly dying of conditions related to a lifetime of drinking Chivas Regal and smoking Marlboros.   My dad was basically saying the same thing Hamlet said. He didn’t want to suffer the slings and arrows of outrageous fortune anymore, but he was too cowardly to leap into the unknown maws of death. There’s the rub. 

I got into hospice work because I want to look right at the thing we fear so much, the thing that looms, that Edgar Allan Poe wrote about as a vivid, gothic horror.  Death, as much a part of life as birth, is still shocking — like something that no one believes could happen to them or those they love. The dying are often tucked away in institutions, avoided, pitied.

It seems to me that the most important work a person can do is to make dying less horrible for someone, including him or herself.  And that’s what the hospice movement is all about. The medical staff in hospice care are amazing people. They know an impressive amount about palliative medicine — the relief of pain and discomfort.  I learned from one nurse all I need to know about morphine patches. 

This particular nurse was helping a colleague of mine, a cantankerous English teacher, a bachelor and a loner who’d left an abusive home in South Boston at 16 and joined the military. Like my dad, he smoked and drank. He got esophageal cancer that metastasized all over the place. A group of people who didn’t really know Paul or each other well materialized around Paul as a team of caregivers, so he wouldn’t have to be institutonalized. He could have his big screen t.v., but more importantly, his books around him.

Paul especially loved Thomas Wolfe. As a young soldier, he had gone on a pilgrimage to Wolfe’s home in Ashville, North Carolina. There was a picture of him standing by Thomas Wolfe’s grave with the author’s elderly brother. One day when I was with Paul after a procedure that he’d been heavily drugged for, I sat next to him with a copy of Look Homeward Angel that he had just given me. Groggy, lying in a hospital bed, he told me to open the book to the first page and read it. I told him I didn’t want to start reading that book until I’d finished You Can’t Go Home Again. He said, “Just open the damned book and start reading.” I did, and Paul began to recite from memory the entire first paragraph of Look Homeward Angel, …“that dark miracle of chance which makes new magic in a dusty world.”  

Another man I stayed with in his final weeks was Mac, eighty something with Alzheimer’s. He’d sit at the dining room table humming to himself, asking me who I was several times, and wanting to know when his wife was coming home. There were two things that soothed him. One was getting him to tell stories about his childhood, which I wrote down in a journal. I learned about how he could hear his mother playing Chopin on the piano from blocks away when he was a boy walking home from school. The other soothing thing was putting on a CD of the Ink Spots, a male singing group from the 1930’s and 40’s. Mac couldn’t remember what day or year or season it was, but he could remember every word of those Ink Spots songs, including their big hit”If I Didn’t Care.” “If I didn’t care would it be the same?”

There’s a growing realization that there’s something palliative, soothing, important about things like poetry, music, writing for those who are dying. I work with a program call Arts in Medicine which puts musicians in the waiting room of the cancer clinic, among other things. I read poetry while a massage therapist works on nurses in high stress areas such as the Intensive Care Units.

Another enlightened program has suggested that people make a living will, not about medical treatment, but about the things that they want with them for emotional comfort. I want, among other things, people to read to me. Paul wanted his books with him until the end. When someone suggested that he start giving them away as he was doing with his other things, he said, “No. My books are my friends.”

I completely understood.