"Steps of Greiving" & Clarification

eta: I can't get the expandable post function to work, so that's why this blog/post is sooo long. rargh.

First of all, muchas gracias a daisybones for linking to me from her blog! (Even if it was "just" a credit link) Much classier and wittily written I assure you... go check it out! I'm tickled that such a beautiful artist woman linked to moi, heee hee ^_^

Okay, so here's what I would like to put under my "..." of the description on the sidebar, but I can't because blogger is hard to navigate/edit. So:

To clarify, I'm undergoing a healing-wholing from what Western medicine calls "rheumatoid arthritis" and "christ, chill out please!" (acute anxiety disorder). I've come to believe that chronic illness springs from damaged energy, repressed emotion, something that needs nurturing... And that all difficulties are simply opportunities for expression and wholing of the self. But of course, we can't be idealistic every day....

In the RA vein, here is an excerpt of the best writing assignment evere creative nonfic piece I plan on submitting... soon... seriously, any minute now. I don't feel that terrified/sad about the RA as often, anymore, but this piece basically exemplifies the tumultous emotions of diagnosis, to prognosis, to my worries, up until about six months ago... I've undergone a lot of dealing, a lot of new ideas about illness/disease since then....

Steps of Grieving

“Ten years ago we would have given you painkillers and hoped for the best, but now we prefer more aggressive therapies—before the body has a chance to deform or deteriorate.”

Aggressive is codeword for terrifying; though in the grand scheme of things I should be thankful. These nuclear-toxic pills he’s telling me about—“disease-modifying anti-rheumatic drugs”; they weren’t meant to shut down my self-destruction. They’re made for malaria, cancer, the kind of illness you think of when you hear disease; my lifespan is jeopardized but no more noticeably than a heart murmur or chronic sadness. Five to ten years reduction, on average. I’m almost twenty and I’m faced with mortality and another affected woman’s motto—I’m living a good life, not a long one. A life sentence and how much I don’t want to believe it, to believe anything. I’m angry, almost—with quality and quantity in the balances, God must owe me something.

But it’s killing me, that thought, the loneliness, like an alcoholic I’m self-destructing, my own immune system chipping away at what allows the fluidity of movement, lets one bend easy as waterfalls. If we knew why we wouldn’t say incurable. I could twist the staircase of my genes enough for the information to walk upright; I could turn off the switch into a low power state and finally sleep without the knowledge that my own flesh is silently scraping away at itself, misdirected, a tide pulled to loss by an ill-intentioned moon. Autoimmunity, I’m thinking; the doctor’s steady voice reeling me back to now from a dream of subconscious suicide, a dream I can’t wake up no from matter how many times I rub my eyes each morning.





“At your age the kidneys and liver should bounce back rather well. Side-effects are rare and usually mild—though usually the only reason a patient will stop taking a drug.”

Hair-loss, vomiting, vivid dreams; later, mood swings, water-retention, anxiety, insomnia. My mother jokes that cortisone is the equivalent of PMS and speed, but otherwise only nods at our earnest dialogue. I speak up, my voice, shaking, asking everything I can—how does it work, what are the options, no really please how does it work? It takes me a half hour to get the man to say “The drug interferes with antibodies’ communications with each other.” He wryly asks if I am a biology major. I shake my head no. Words are the only thing I love enough to keep living most days. Poetry as condensed emotion, all feelings held in this petite jar of false fragility, three stanzas. I can’t give you morning stiffness or blows to the knees, disabling fear or creaky heartache, but words—these are the only things I can shape without tiring or shaking myself to terror. It’s a tragedy, drama, monologue and dialogue—but mostly dark comedy, plot twists so common that corners no longer leave me surprised.

Irony makes me sicker than the drugs themselves. The doctor and my physical therapist with their voices turning somber when we talk about “the rheumatoid” it feels more like a death-sentence than the thing that gets me out of bed every morning. Always, your age, your tenacity, your youth—after the first college semester of cheap wine I have to swear off alcohol, the doctor encourages “smoking the good stuff”, chemo has given me a life-time prescription to the morning after pill. These bones are mine but my age is an idea, a date on a card, a day of the year, a constant reminder; a year into college and I have spent two paychecks on necessary drugs that can kill faster than cocaine. The sterile paper warnings tell me to not brush up against pregnant women—and to not become so myself— because, combined, the medications have a ninety-nine-percent rate of birth defects and miscarriages. I cry sorry to my body for this poison, this toxicity, I wonder what else I’m killing as the white blood cells dip dangerously low and chemical waste seeps from my fingers—six months out of high school and I consider getting my eggs frozen. I’d have to go off treatment for a year before conceiving and to breastfeed, and I hate to say it but I am just as afraid for my own pain as the well-being of my babies. I know the standards women are held to as creators, and even more terrifying is being unable to find a man who could see this decomposing girl bright enough to care that much—one who’d care enough to wait for me, for our children. Romantic overtures turn into cold stutters and some nights I hope these beautiful woman parts will become barren as tundra. I’d still be lonely, but at least I’d have an excuse.

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all work writing and bitchin' metaphors (c) treesa dee, in all psuedonyms and actual names, in all times hencetoforth, past, and present, etc, ad et al. if it isn't awesome you can have it. but well, it totally is.

Blog Blaghs

The view of my hometown from our cattle ranch, complete with our calvy cows and green hills in the foreground. On Saturday I'll be leaving this-- the rural-burb--for the big city....School year, here I come...

I still can't get this blog fixed the way I want it, blargh... And I still feel awkward in my writing--fumbling, unworthy--and I wonder if this is where I'm supposed to be, the "blogosphere". I need to find some disability blogs, get my blog feed set-up, upload some photography, go to some slams, freewrite on the nature nurturing and my weird-ass dreams...

In the world of RA: I began Humira this week--a bi-weekly anti-protein injection. The protein attatches to cells involved inflammation, so ideally all those levels should go down in the next three months. Holy jesus, injecting yourself with this shit hurts. Hurts so bad I took 5 seconds to inject 40 milligrams. Four hours later I have terrible pain in my right hip (hips are unaffected by the arthritis), and my right leg starts to go numb. It turns out you're supposed to take two whole minutes to do the injection. Say what?! My mind is blown. So that's going to become a bi-weekly wednesday ritual: take the Humira out of the fridge, soothing music, lavender tea....

Recap: That's plaquenil (antimalarial), methotrexate (chemotherapy), and Humira (TNF Inhibitor), plus Aruveydic digestive formula (to get rid of am) and nasya (anti-anxiety/Vata balancer). I quit taking the birth control because I don't need it (and hopefully won't in the next year or so) and DUH. I'm anemic. Getting my period four times a year was probably a good thing.

Coming soon.... An awkward racism/classism encounter at a Japanese restaurant, and an excerpt from the piece I plan to submit to Belevue...

(Okay, I still feel awkward. AWKWARD. Maybe it's the glasses. Maybe it's because two people read this. Maybe my brain has forgotten who to write. BLAGH. *headwallheadwallheadwall*)

North Prayer

I give thanks for the fish my man-family greedily steals; far over the limit though not beyond what we can eat. They gloat over sizes and granddaddy stories, whine about aching feet and I know we could have afforded another meat for our supper, but even if our bellies are filled their souls will only be stilled by the rhythm of the fly rod, the focus of the deep pool and softly-loud stream. Is that not need? I ask the corn mother, and yes, she says, men with unhappy day jobs and concrete between their toes seek to be gods on the weekend pursual of innocent bucks, the rocky silence of wilderness and brash backslappings of boys.

Where else can we be men? they ask, and sky father answers, All places under me—but they do not hear. This thankless ungrounded society deludes them, tells them men take and take and power over and beat down and conquer, and they carry this harsh unhonoring with them, from degrading their mates to chasing the antelope until their aging bodies throb, then go back to the cabin full of cheap brews and steaks that died afraid, where they will scrape out their gut-souls with more granddaddy stories and feigned fireside anger. Men? I ask, and as His bearded breeze sweeps through the aspens, they quake with Her laughter, they carry away my whispered prayers of gratitude as I stand by the tail-gate, enraptured by rainbow scales and cold eyes trapped in a Ziploc—brown trout, fingerlings, rainbows, people earth-darker than I say that their wisdom comes from always knowing which direction home is.

Even in my father’s oil-stained hands the hooked trout twists strong as a snake, as a bent willow, seeking the water, the upstream. My boy-family is as out of place in cities, in Wal-Marts and strip malls, but where is their fight to seek the ground? Ten minutes ago this fish was slipping through the stream beside me, unaware, and now lies on my plate floured and browned. I never enjoyed eating fish, and I still don’t. When they take fine-boned meat within themselves, what do the men-boys learn, I ask? Plastic, uncaring, downpayments and empty screens—how much more can my father take, how does he keep his gills fluttering so long away from the hills and the oak? With this, the trees murmur through mud in my jeans, the wind coaxes answers from my creek-washed hair. And I give thanks, for warm muscle sliding down my throat, for my father’s fumblings, for the quaking aspen, for the lies that drive us to seek the intensity of these long hauls and payless days, this condensed, desperate forest loving.

Lungs

Hopefully once school starts my writing will be more current; less musing on the past...
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I was born three months premature, and from the second I was in the doctor’s hands, from November 1988 until March 1989, I had slim white tube go from a ventilator directly into my too-tiny lungs. The wailing cry most babies set up after birth, to tell you that they’re scared and healthy and here? I probably never had that, my mother doesn’t remember. I suppose my first breath was the spring they took me out of the incubator to go home—still only 4 pounds after months of IV feeding. A month later I came right back, with pneumonia complicated by infection-related asthma… Of course I don’t remember that, but I can imagine what it feels like: drowning. I already what bronchitis and asthma attacks feel like, like a fist clamping down to stop your lifeblood, like there are holes inside and no breath makes it to the bottom of you. To have water in them, overflowing each miniscule aveoli in my already bird-like body, doctors with sandbags and buckets, as though your lungs were a lifeboat and the perpetual wheeze and gurgle of a five month old child the winds of a storm.

In folk medicine the lungs are where sadness lie: in the winter, we get lung-sicknesses when we lose the light of the sun; we stop breathing from grief… I still feel sadness there, between my ribs, in the heart chakra (which rules the lungs). It’s a spiked flower opening, a pulsing loneliness, like all the holes in me from sickness, all that pain leaks from one rent in my heart. And what am I sad for? Regret over clothes and my lost grandparents; why the hell don’t boys love me back; my mother’s sister; my elbows don’t straighten; disease; failure to accept what is: they bang up against each other in the dearth of my chest.

Though I’ve struggled to breathe my whole life, two gifts, music and yoga, helped me overcome that. I was told I’d never master the flute because of my breath, the asthma, yet I worked so hard at it I forgot about those handicaps. Each practice I strove for the full, perfect breath, one that fills from the belly to the tip-top of the breastbone. I learned how to ration, how and when for quick Inhalations and big gulps of air, how to preciously siphon it out, note by note. The headache of held breath, the push of lungs to get out that final trill. I was absolutely grateful to realize how precious the flow of air is, how glad I was to find some beautiful use for it.. After I began playing the flute, I rarely had asthma attacks and never got bronchitis or any other terrible lung trouble again—amazing, the doctor’s said, after ten years of breathing hell. However, I still had terrible fatigue and moodiness (partially the RA), still couldn’t get a good breath all the time, still hyperventilated terrible when startled or anxious…

But then came yoga: oh, yoga. The first six months of my practice, while weirdly uncomfortable and painful, at least taught me the three-part breath. It was joy, epiphany, orgasm, to realize that there was a set way to get these perfect, blissful breaths all the time, to realize that this is what we are entitled to, that full lungs are not just random, fateful happenstance! And it all clicked in the last few months at the new studio, how to breath with and into movement, to wrap the breath around you like a cloak… It has truly been a blessing, to realize how blessed I am, to get so much more life and tapas into my system. Ironically, my first breath was a doorway to pain, sickness, and life, all at once, now my breath is the first step to health, the first step to nourishing my grieving lungs, to breathing with the full body like tall plants do, turning to face the sun.

But aren't they all big decisions?

I’ve talked to a few people lately about my decision to eventually get off all Western medication and entirely herbal/REAL nourishments (supplements seems like a weird word) and have been faced with a huge dichotomy. At first it was only acceptance, “Good for you!”, etc, or even interest in my plans and specific herbs (which was super sweet of them J) The next few people wanted to make sure I was planning on seeing a real healer and not “some quack”. Most true fakes will tout a single fruit/herb as a panacea, or are otherwise snake-oilsman creepy, so they’re easy to pick out. On the other hand, most of these optimistic people don’t really understand the nature of rheumatoid arthritis, “a chronic, debilitating auto-immune disease” (In a weird form of coping, I have memorized the wiki article, the hell?) I mean, I’ve lived with it since I was 13 or 14, almost a third of my life, and up until a year ago didn’t realize I was that different from my peers (thanks dorm living!) But I mean, chronic, ie lifelong, ie you will never escape. And it’s the first freaking descriptor in the article. I know if my doctor knew about this plan and I was three years younger, he might get my parents to physically force medication on to me, as to live with RA without medication is a practically a death sentence. Being alive and disabled is supposedly better than being able bodied and dead, but is it really? Questions like that are too big for my headache squeezed brain right now.

Anyway, the other camp: You know you can’t measure those, right? And that they’re really strong? I mean, you can’t regulate them. And then I meet their faces calmly and they shut up, quietly labeling me as crazy hippie girl who thinks she can organically outsmart The Man. If there is one way to bypass the man is will be with a woman. And really, what is growing out of god’s green ground is more dangerous than what’s in that bottle? It’s alive, at least, it has intention and energy and hope. How often to people OD with suicidal intent on “herbal supplements”? And yes, too much of anything is out of balance and can harm you—we don’t eat oleander, I’m not choking down an entire plant. That is what teaspoons are for, and decoctions and tinctures and teas. The idea of I don’t trust my body enough to know when to stop, I don’t know myself well enough to measure how much to eat, this disconnection is what fuels consumerism and an outsourced society: “we pay people to love us, we pay people to heal us.. .we even pay people to bury us.” All you need and all you need to know is within you. I feel sad for people who need a magazine to tell them when to eat (you could argue that Ayurvedics etc do the same thing, though most alt. traditions allow for uniqueness and self-determination, where food-fads and eating publications do not).

I trust myself to, when I try to mushrooms, to try them a little at a time—no matter what anyone tells me, experience or no. I know myself well enough, through different lenses as well as my own, to know when something will not be healing or healthy or nourishing—I’ll know how much catclaw to try, I’ll know when my bodymind no longer needs these (un?)natural blessings of modern medicine. I know enough to choose medicines of joy rather than those ofprocedure, medicine of instinct and earth over medicine of classist schools and racist policies. And yes, I acknowledge that sometimes the needed, fated, natural blessings are Western Mecine. But my eyes are open and I’ve got the woods are clearing out the toxins in my viens, fields soaking up all the sadness in my lungs.

I sat back in a massage chair the other day—it was so soft my body automatically relaxed, and I thought, how long has it been since I didn’t have to force myself to let go? The first time I was so small I don’t even remember, and it hurt—everything too bright and harsh, everyone trying to hurt me. The last time I got my heart broken, broke as my grandmother’s roping saddle, and how long much longer can the heart, the self, survive without that? I’m sorry, but I can’t—stoicism is not something we have to undertake. Sipping lavender tea, a sedative, but the best kind—someone’s arms around, that soft scent holding you while you sleep. Really, truly, bones-relaxed sleep. If it’s out there, that whole healing, I won’t just stand back and watch it pass by. It's my/our duty to pursue the highest ideals we can