Saturday, November 7, 2009
Last night I watched a rather timely PBS Empires episode called "Holy Wars" about Salah Al-Din and his reconquest of Jerusalem during the Crusades era -- his decision to not slaughter or terrorize the Christian population made him a legend among Islamic and Arabic nations, but cut him no respect from the bloodthirsty Christianists of Europe. Like Bushies, they viewed compassion and respect for others as a sign of weakness.
When you have a nation (and city) where prevailing values are adherence to authority, a narrow and base-emotion definition of patriotism, and limited funding for "social" issues, internal violence will be the norm, not the exception.
Dinah finally left my immediate presence for a couple of hours to sleep, which I take as a sign of healing on her part. I'm still not sleeping more than a few hours at a stretch, related to pain. I myself sorted through some of my feelings last night with Martha, mostly having to do with being at the literal mercy of anybody who walked into my hospital room and having little room to say no or insist on autonomy. People think giving advice to those who are ill, pushing them to "do what's best", telling them stories about their own medical experiences or those of their friends & family, and/or generally assuming their thinking and decision-making is somehow impaired even in areas it is clearly not, are all manifestations of caring instead of actually simply being roadmaps to the advice-giver's own emotional blocks about what is going on -- i.e., "here's my difficulty with your difficulty, since you're lying there unable to get away or go find other resources, let me demand you deal with my difficulty right now". No wonder we can't think rationally about a simple health care plan, when we're all so bollixed up with panic about ever being truly sick and helplness ourselves.
Work on it, people. Work on it with each other, that's all I ask. Just like you work on your crap about brown people with other white folks, and your shit about women with other men.
Dinah has discovered the yellow "FALL RISK" bracelet from the hospital that I ripped off my wrist I got home and thinks it is a great toy.
My stamina is still so hammered, typing this much leaves my fingers trembling to the extent I have trouble keeping them in line with QWERTY. I guess I'm done for the time being, need to go lie down again. Dress your children in bright colors, not camouflage, and remember what Mark Twain said: "History doesn't repeat itself, but it does rhyme."
Thursday, November 5, 2009
Too long for Twitter, again: Dinah prowled and wailed every half hour all night long. I'd call to her and she'd come at a trot, need extensive contact to stop vocalizing. I had an endless fount of reassurance. I can hardly take in how painful this separation must have been for her. Finally, mid morning, she slept on my chest and then slept two feet away on the bed. Whenever I noticed her eyes opening, I'd tell her how much I love her, need her, missed her.
I found a long-lost cat toy near my bed, which nearly broke my heart -- I can imagine her trying to bring it to me, only to remember I was gone. We played with it for a while. Also have had regular dispensing of treats. Despite her food bowl being empty, she's not lost weight, and she's eaten from the refilled bowl but not ravenously. I think she figured out the big bag of cat food here by my desk was not sealed tight and helped herself, which is a relief.
Early afternoon the news about the shootings at Fort Hood broke into Rachael Ray locally and I followed that off and on, except when KBH or Chris Matthews were on the screen. I can't access wifi in my bedroom on my little netbook and don't have a cord to reach into my study where my main PC is, but at the moment the solitude -- or rather, being alone with Dinah -- is still an enormous pleasure. I need to sleep and dream a lot more. Scenes from Ginny Bates, past and not yet written, keep breezing through my head. They are some kind of palate cleanser for the hospital experience, I think.
I am lucky as Myra (the main character based on me in Ginny Bates, who wins the lottery as well as love). I know much of my luck has faces, names, heartbeats. I am reminded of the poem by my bed, written about in a post of mine at Meta from March 2008:
The darkness lifts, imagine, in your lifetime.
There you are - cased in clean bark you drift
through weaving rushes, fields flooded with cotton.
You are free. The river films with lilies,
shrubs appear, shoots thicken into palm. And now
all fear gives way: the light
looks after you, you feel the waves' goodwill
as arms widen over the water; Love
the key is turned. Extend yourself -
it is the Nile, the sun is shining,
everywhere you turn is luck.
(by Louise Glück, from The House on Marshland)
(Dinah above my computer, May 2005)
[Cross-posted at Group News Blog.]
Every Thursday, I post a very large photograph of some corner of space captured by the Hubble Space Telescope and available online from the picture album at HubbleSite.
BRIEFLY IT ENTERS, AND BRIEFLY SPEAKS
by Jane Kenyon
I am the blossom pressed in a book,
found again after two hundred years. . . .
I am the maker, the lover, and the keeper. . . .
When the young girl who starves
sits down to a table
she will sit beside me. . . .
I am food on the prisoner's plate. . . .
I am water rushing to the wellhead,
filling the pitcher until it spills. . . .
I am the patient gardener
of the dry and weedy garden. . . .
I am the stone step,
the latch, and the working hinge. . . .
I am the heart contracted by joy. . .
the longest hair, white
before the rest. . . .
I am there in the basket of fruit
presented to the widow. . . .
I am the musk rose opening
unattended, the fern on the boggy summit. . . .
I am the one whose love
overcomes you, already with you
when you think to call my name. . . .
Posted by Maggie Jochild at 12:05 AM
Wednesday, November 4, 2009
Everytime I think about getting out of here, my chest relaxes a little and I breathe better. It will be hellishly hard on my own but no one will be opening my front door without my choice, and no more small talk, which is to conversation as WalMart is to small town main street commerce. Pajamas and keyboard, that's enough for me. (grin)
One thing that has emerged as my attention returned is that my attraction to folks who are looking for a place to tell their troubles has spread up and down the hall, apparently. I'm a better listener than I am storyteller, but at home I have a stopcock to control who dips into my well. Yesterday I earnestly told Erlinda, the tech of techs, how much everyone here admires her quick learning and leadership. She was clocking out for the day, but stayed at my bedside for half an hour to tell me what it was like raising her three abandoned nieces the past 9 years. Honestly, it's a tale I'm honored to have heard, altered my appreciation for others ever upward -- but what is it I do that inspires others to confide in me? In Erlinda's case, I wanted to hear. Otherwise, I am not even watching the daily reruns on cable of "Grey's Anatomy" -- my own body and midstream ordeal is swallowing the lion's share of my focus right now, and as Stuart Smalley would say, "That's okay."
Yesterday as I was warshing up (as one tech says it), I examined the altered corpus Maggie carefully. The blown IV sites and JP drain scab will go away entirely, I think. But the contours of my front are permanently rearranged -- large capstone bulge gone, everything listed to the right, and a wicked ruck from just below my breasts through my navel like the Hayward Fault when viewed from Mount Diablo. There'll be no problem saying "Yep, that's her" if I wind up mangled on some CSI slab.
Surgeons go directly to the source of an issue and tend not to deal with the aftereffects. This is seen as more efficient, as all versions of Henry Ford compartmentalization are now revered as most productive. I always question this ethic but especially now, as I hear the muttered resentment techs have toward nurses (who say "call a tech" for ass wiping) and the sullen obeisance nurses display toward doctors who breeze in and out far more obliviously than even the most gritty TV drama depicts. When we added making a profit to the work of caregiving -- and especially Reagan's permission to be greedy as an America ethic -- we created the monster that our government is currently too feckless to tame.
Thanks to Jill Cozzi, by the way, for reminding me of the excellent meaning of that word, feckless.
In contrast, a Quaker man, Sean Carroll, is arranging for a CarShare to get me home after my discharge today, since he doesn't own a vehicle. He's already done all the shopping I need to be safe-ish at home , except for the correct size diapers, which will arrive via FedEx tomorrow -- although at least 1/3 of all American women weigh 200 lb. or more, this hospital doesn't stock diapers that go beyond that size, nor would they research finding them for me. Thank g*d I was alert enough and able to get online to meet my own basic dignity needs.
You know, lesbian-feminism of the early 1970s is where I first encountered the concept of political correctness, and it's never been a joke to me. At bedrock, political correctness is about striving to express respect and kindness according to cultural values which may vary from the ones you were raised with. Respect, privacy, pluralism: arch enemies of the fear-based Right.
I don't know why, but for the last 24 hours a particular memory has been popping into my head, as it did just now. It's my first memory, and occurred when I was around one year age. We were living in Kolkata and I was out for the day with Nilmoni, my ayah. We were in what my mother called a rickshah, which was in fact a horse-drawn cart with a single horse. We turned into a street clogged with a mob. Nilmoni began shouting at the cart driver to get us out of there, but we were already being surrounded and horses have to be turned, there is no reverse gear. I was in her lap, held tight, and she put one hand over my face to block my vision. I tugged at her fingers ineffectually, then discovered if I opened my eyes I could see between her slightly spread fingers. I went still, watching with interest.
The crowd was all Indian, which was normal to me, I thought I was too. It was all male, and they were angry, but I wasn't worried because I was with Nilmoni. They were holding aloft, above their outstretched arms, two items: a round of bread and a man, passing them toward one side of the street. The man was struggling, wild-eyed, shirtless. It was intriguing to see an adult passed around as easily as I was.
At the side of the street was a two-story building with outside stairs to an upper landing. The stairs had no railing but the landing had a wooden frame around it. A rivulet of the mob swirled up the stairs and the flailing man was passed upward from arm to arm. Someone on the landing had a rope which was tied to the porch. As the man reached the landing, the other end of the rope was knotted around his neck. With a roaring surge, matched by Nilmoni's shrieks at our cart driver, the shirtless man was thrown over the railing in a small arc. He slammed against the side of the building and a seond later reached rope's end. He scrabbled frantically at the stucco wall with fingernails and feet to find a purchase. Before he could, our cart finally turned out of view. I tried to turn my head to watch but Nilmoni held me fast.
I didn't understand what had happened, and there is no negative emotion in this memory, only excitement about curious adult behavior. It is vivid -- the bright sun with dust in the air, hoarse shouting, Nilmoni's smell, and the look on the face of the shirtless man, his dark sweaty skin and the visible ribs on his torso. Years later, when I was six or so, I began telling my mother about the memory to ask her what it all meant; I thought of it often. She sat down heavily in her kitchen chair, her face horrified, repeating "My god, my god."
She knew the incident. Nilmoni had told her about it when we got home that day. They were both reassured by their belief I hadn't seen anything, and did not want to discuss it with me. Mama said the man was from the untouchable class, still a strong practice in 1956, and he had stolen the round of bread.
Now I have two versions of the memory, my original and the unspeakable horror of what actually occurred as Mama gently explained it to me later.
Sorting out this cacophony we call life takes up all our time. I'm going away to Ireland soon, will be home tonight, and can resume my sift in solitude. Aching, incontinent, exhausted, in a mess of a house, but with just me and Dinah to accommodate. There is peace and wonder to be found in any situation, even death, they tell us. I'll write again as soon as I can.
The Roches singing "The Troubles" in 1983
[Cross-posted at Group News Blog.]
Tuesday, November 3, 2009
Sunday, November 1, 2009
1. Maggie's using Twitter.
to post updates.
She says "I can manage 140 characters."
Her Twitter feed is totally worth reading. She's a poet, right? She gets a LOT into her 140 characters. *smiles*
2. Maggie probably won't be discharged today.
At the moment from reading the orders the Fill-In Doctor has left, it appears Maggie will not be discharged till at least tomorrow. We believe (but don't know for certain) that Good Doctor will be back tomorrow. Good Doctor is the one who has been standing up for Maggie.
Her physical strength gets stronger day by day. No matter when she gets discharged, going home will be very very hard. She will endure and survive; it is what she does.
3. We still need to raise $1500 (or more); we just have to see.
Maggie's Binder, a device she wears around her entire abdomen and back in order to keep the surgical incision from coming open, which makes it DAMN difficult to do many ordinary functions (as the Binder goes WAY up almost over one's ribs and down low to the bottom of the lower belly thus leaving one's entire middle in a splint) which means for the next two months Maggie will not just have big difficulty, pardon me, cleaning herself after using the bathroom, but she'll also find it difficult to sit up straight to use the computer (her little Netbook is different, and no, her work software won't load on her Netbook), to walk through her apartment to put away food or cook a meal, or any of the basics of life. She can lie down; she can prop against some pillows; with difficulty she can turn over. She can NOT ever ever ever put any fracking strain on her abdomen. At all. Or she might (literally) find her guts all over her bedroom, bathroom, or kitchen floor.
Thus DME (Durable Medical Equipment) for rails on her bed, rails in the bathtub, a higher toilet seat, and much other stuff. Maggie will need enormously higher quality food than she can usually afford (her regular food budget is $140 per month; yes, seriously. If you've ever had a meal or even a meal for two that cost $140 or more not including booze, raise your hand. Look around. Notice that over 80% of our readers have their hand raised. Thank you. Okay, put your hands down please.) and more medicines than she normally can afford (at best she can maybe afford $10 in generics per month plus another $10 in OTC medicine. That's on a good month. The rest of the time she goes without and suffers. I who have health insurance -- and I complain about my prescription drug copays -- pay about $120-150 per month on average for prescription drugs (which I must have or I'd be in the hospital or dead or unable to work and then in the hospital and then dead; like in the same situation as Maggie, so poor I'd be absolutely fucked plus pain beyond compare from the lack of meds... Most likely I'd end up, well, let's not even go there. *shudders*) Some months I pay $200-250 if I get extra sick or the doctors want me to try something new. The retail price of the medicines is around $2500-3500, I'm not certain; I've never really checked because the most I ever pay for a drug is $50, most are either $5 or $25. And being in the upper-middle class I can afford them.) Maggie will need cab rides to visits with her doctors, physical therapists, x-ray examinations on the surgery, at least some of which she'll likely have to pay for in cash as there's no way her Medicare will have come through by then. (We're working out how to pay for these services but some of them don't look good; if we can't pay for them it may be she'll just do without if we don't raise the money... which is how we got into this mess in the first place.)
Bottom line, we still need to raise much more money for Maggie.
My request is that folks subscribe, that is commit to a monthly amount via PayPal of $200, $100, $50, $20, $10, $5, mix and match. Or you can go to Meta Watershead and in the top right corner, hit the Donate button with any amount for a one-off donation. At Meta the Subscription buttons are also there for $5 to $10 monthly, to $20 or $50 a month, and for a number of you, $100 or $200 a month.
A choice: If you're choosing between a one-off donation of $50 or less and a subscription of any amount, please go with the subscription. What, huh? It's simple, really. We'd much rather have the certainty of knowing Maggie can count on that amount from you, even if it's only a large cup of Starbucks cappuccino or a dinner out. Or maybe a dinner out for two. *smiles* The reliability of being able to trust the subscription in the months to come means much more than a larger one-off donation now. It means stability. It means knowing Maggie has her bills paid every month. It means cash-flow.
Speaking of cash-flow, frankly the present-value of a smaller subscription over time is MUCH less to you than a really big one-off donation now. Now obviously we'd love for you to make a big subscription (don't kid yourself; feel free to subscribe to those $100 and $200 buttons, that's why they're there. I and I think two other people are on the $200/mo subscription. Plus I made additional donations every month.) but we're cool if you don't. What we're saying first is that the present-value to YOU is better if you give less each month than if you dig really deep and make a one-time really big donation. Plus that way you get to keep all that interest till PayPal sends whatever the amount is off to Maggie.
From our point of view, a bunch of monthly subscriptions means we can all breath a little easier knowing each month isn't a scramble for Maggie to survive financially. (And yeah, we've applied for all the various financial aid programs, federal, state and even local, but it's going to take at least half a year for them to kick in, and that's assuming all goes well. We have this on good authority from the financial aid/social worker at the hospital Maggie's in whose job it is to get this aid for people.) So for now, y'all... we ...are everything Maggie has financially.
Thus, from two and a half weeks ago until we reach whatever the financial goal turns out to be, $4,000 or a bit more (and we're just not sure yet; ye Gods how I wish we were) what there is is for me to ask you... Please:
Please reach out for Maggie. Step up and make a monthly subscription: $200, $100, $50, $20, $10, $5, or jumble them as you wish.
Your generosity to date has been overwhelming. Not just with money, but with your good wishes, with people offering to help -- we have one person running errands in Austin, y'all have donated not one but two Netbooks (and maybe a third, not sure yet) and we're still figuring what to do with the extra one, and most of all your heart in being there, talking to Maggie on multiple blogs and emails blows me away.
She, and I love all of you so much, are so deeply moved by who you are and what you are doing to help her. As a group of people and as individuals you have really stepped up. You amaze me; you inspire me. Thank you for the gift you have been, and for the gift and contribution you continue to be to Maggie. I honor you for who you are and for the difference you make. Maggie is alive and getting better each day and it would not have happened without her friends and all of you being the difference in her life. Thank you for being you and for loving one another.
Every religion has some version of the Golden Rule. You my precious readers and friends, are living examples of how both the Practice of spirituality and the Golden Rule are designed to work on the ground. The Blessings of the Gods on each and all of you, your families, loved ones, and those with whom you work and associate.
Cross-posted at Meta Watershed and Group News Blog.
In the house of long life
there I wander.
In the house of happyness,
there I wander.
Beauty before me,
with it I wander.
Beauty behind me,
with it I wander.
Beauty below me,
with it I wander.
Beauty above me,
with it I wander.
Beauty all arround me,
with it I wander.
In old age traveling,
with it I wander.
On the beautiful trail I am,
with it I wander.
In the culture of the majority of my ancestors (Scots, Welsh, Irish), today is the New Year. Here in Central Texas, it is Dia de Los Muertos. Since I am bound and cannot go even to Friends Meeting, I am repeating the Dine morning prayer to myself and contemplating the treat of a bagel for brex. If they'll let me have it and if it comes with a schmear. Onion or garlic if I'm very lucky.
I was at Shungopovi for the Antelope Dances the last time I spoke with my mother. I camped on Second Mesa and had to drive a ways to find a phone to call her. Something unexplainable happened that day at the dances; I try to write about it but can't tell it right. The next day I went to Canyon de Chelly, and the following afternoon she died in the blink of an eye, finally having escaped my tether.
I don't know the connection yet, but since awakening that old Alix Dobkin song "OKOY" has been playing in my head:
Maybe time alone will soothe our bones
And clo-o-ose the wounds
I'm angry that I don't have the language of my ancestors, maybe Gaelic has tenses or vocabulary to tell the stories lodged in me. I'm angry at how far the the edge I slid, toward my mama and brother's path despite swearing to myself (and Martha) that I would not. I'm angry that my values and choices mean poverty in this culture, and that poverty is not simply limiting but interpreted by institutions and much of Christianity (founded by a man who chose poverty) as dishonorable.
I'm angry about Steve Gilliard's death on a whole new level, as if he were my little brother.
I'm right at the edge of being able to go home and fend for myself. A man with whom I sat in Friends Meeting here for decades, Sean Carroll, contacted Jesse to help me in town. He has been shopping for the DME, household supplies, and good food I'll need to return home -- using money y'all sent. He doesn't own a vehicle but keeps borrowing one or arranging for CarShare to run errands, and has offered to be my ride home when I am discharged. He is bedrock that arose from the waves. He keeps thanking me and Jesse for the opportunity to be of service.
I know how he feels, that's the thing.
I'm terrified about how hard the next two months of recovery will be, even as time and good will closes the ruptures of this year. The only way to face it, this new year, is to remember I walk in beauty and to rest in the altered manner taught to me yesterday by Heather the PT -- who also grew up poor and decisively called me on what Mama always said: "Use it up / Wear it out / Make it do / Or do without." A bad adage when it comes to bodies, although the poor and working classes often have no choice about it.
I just stopped to order breakfast -- yes to the toasted bagel with cream cheese.
I am the only person left to tell the stories of my people in a way so they quilt together with your own stories. I was born and raised to do this. I'm not done yet. Narrative may be our most persistent delusion, but it's how we recognize one another in the dark and this introvert really does want to be with you all, as long as I can have a room of my own too. More to come.
[Cross-posted at Meta Watershed and Group News Blog.]