"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.

---

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*)

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

On Music & Grieving

(I realize that these posts are really long. I'm still learning--how to write prose for an audience, how to edit in blogspot, how to uncomplicate myself... Bear with me, lovers...)

Part of me is still grieving for the lack of music in my life—and no, that’s not a metaphor. Looking through the closet I caught myself thinking, My tuner, why is the tuner not on the piano bench—and then I remembered, with a pang, that I no longer need it. Not even why, but just that simple fact: I am no longer a musician. And it is just like a death. I did the same thing when my grandfather died when I was about 13—caught myself hoping he’d give me a ride home from school. Wondered why we needed to feed the cows every weekend, why his denim jacket was still over the chair, who would open the pool door, then that quiet voice—Oh. Wait. That’s when you remember. And music is a strange thing to lose, because of how it permeates our culture, how much joy and expression I still find in listening to it. I’ve felt a kinship with certain musicians, and like most kids of my generation (or just most kids?), music has gotten me through rough times. I’m not just talking about Alanis and I having angry girl scream-time over a terrible break-up, or Matchbox putting it perfectly:

Music introduced me to art, which introduced me to artists, which introduced me to some ideas:

a) Its normal to feel things deeply, analyze the world around you, and be sensitive and complicated and “emotional” and “touchy”

b) In fact, a lot of people feel this way

c) But are a bit “messed up”, and usually not accepted by the status quo

d) BUT they also make beautiful art. Also, you’ll get along with them.

e) All of this is perfectly okay, maybe not in society’s eyes, but in something higher—whatever made you this way, whatever source this beauty is derived from.

f) Anger & intelligence = depth &also =superattractiveness

There was that. And then there was music. Sounds. Lush sound that filled your ear in perfect interweaving harmonies and always reminded me of moving landscape. I can’t tell you how full my head is when any more than three notes are played, piano or orchestra, keys and chords that swell until light is pouring down behind my eyes. I had only two instrumental pieces for a long time, the Main Titles and Farewell of Spiderman, by Danny Elfman. I still find the synchronicity angelic, perfect rhythms and tempo lull me somewhere between meditation and heaven. Music is one of the few things, that experiencing it never caused me anxiety, and (until now) was never something I associated with my “weaknesses”—in fact, in my own pursuits as a musician, I pushed myself for four years straight. Every time I felt fatigued or achy or plain depressed, I made myself go to practice, stay late at pit, or play at home, memorize the music, cheer at football games, stand up straighter, lift my arms higher and get goddamn better at what I did. It was one of the few areas that, when I made mistakes, I didn’t panic for too long—I was simply happy to be doing what I was doing. I’d remember, each time I slipped up, No girl you’ve done that and it was wrong, remember? And then that was it.

But there was always something missing—I simply couldn’t get myself to pay attention to music at home for more than a half-hour at a time. My fingers lacked some quicksilver-gene, and my tone, while progressing, wasn’t much compared to my fellow section-leader, a “natural”. I know now that if I had just worked a bit more on those solos, maybe I could have graduated to harder and harder pieces, but somewhere along the line I gave up. I can’t stand playing by myself—without a band to play with, without community, music is just less to me. So in a way, I almost shouldn’t be grieving no longer playing my flute. I have no band, no time, and jesus Christ in heaven it makes my shoulders hurt.

But still, I walk past my piano bench and the music is still set out from last summer. I live in the house my grandfather built, sleep next to his bookshelf—This Old Barn, On The Trail With Luis & Clark, Airwar:Terror From the Sky. I cook in the same kitchen we gathered in the morning after he died, a shocked winter, the stovefront empty without his bustling. I suppose I could sell my flute, donate the sheet music, get a new iron skillet and redo the wallpaper… But this living alongside ghosts, is it really holding me back? Isn’t it pain that pushes us forward? How much do I need to keep in the cupboards so that I don’t forget the love and lessons that quiet patriarch and stubborn instrument have shown me?

Re-Stepping onto the Mat

My yoga practice differs greatly from many others, for both obvious and more subtle reasons. Most people in the West, if they delve deeper into their practice, it is to physically strengthen themselves, conquer asana (pose) after asana, maybe bringing some meditation/relaxation into the practice. Of course, when we clear the mind that opens a channel for change, and many people do find their lives—their selfs—changing greatly after taking up regular meditation. From what I’ve seen, unless someone possesses a great depth and, usually, a great trauma or hurt in their lives, they rarely take the time and thought to use the philosophy of yoga in conjunction with mat practice as a conscious tool for change.

Since I’ve restarted, that’s kind of what I want from my practice—conscious change. When I first got into yoga, I went in to class blithe and enthusiastic—at first. I was overjoyed to find something physical to do that I truly enjoyed, and determined, finally, to accept, explore, and love my body for what it was. Who cares if I can’t touch my fingers to my shoulders? Who cares if I can’t straighten my arms, or if I collapse in downward dog, or can’t rest back on my heels? I went home every night ignoring the pain, relishing in finally feeling energy and tranquility flow through me in ways I couldn’t remember ever feeling before. Always, since childhood, I remember mostly feeling anxious and stressed—either too much in my body, (irrationally?) fearing for my well-being; or entirely out of it, head in the clouds or a book. Yoga equaled peace to me… Until I came down from the initial high and began to look around. The studio I went to did not have kind energy towards the physically unable, the intellectual, or the lower-middle class. It abounded with “kick my ass” suburban moms and twenty-somethings, and more middle-aged lean-serene-yoga-machinis, and had zero sense of community. I began looking around classes, seeing people older than my mother easily doing poses that made me shake and wince. I did remain optimistic, but the idea of my own youth, my own weakness chewed on my mind. Something is wrong here.

And then I was diagnosed. This was after I had finished yoga for the summer, and was off to live my first year at college. A week later I was on a toxic drug that didn’t help at all, had a rhuematologist’s card in my wallet—just in case—and was moved into a dorm with a full load of classes to tackle. Leaving home for the first time, adjusting to the big city, and being diagnosed with a crippling, incurable disease—rheumatoid arthritis— it’s no wonder I was miserable that autumn, though I didn’t realize at the time. I let myself wear sweatpants to class, something I had never done in high school, as I took school seriously. Looking around me, college felt like an extension of the yoga studio—everyone professional, exuberant, well-dressed and well-adjusted, while I sat in the back of my mathclass in stained sweatpants and slippers, aching everywhere despite the Plaquenil. I took a yoga class that semester but only learned, from my rather hippie professor, who looked like santa claus, that Bikram yoga symbolizes everything that is wrong with society today. We did the same slow 4 sun salutations every class, and my mind was usually elsewhere.

After some changes that made spring semester amazing—namely a new roommate, less lounge clothes, and more medication—I’m back home for the summer and at a new yoga studio. I work four hours a week in exchange for free classes, and am on good terms with the owners and a few teachers. I’ve had nine months to come to terms with the words chronic and dehabilitating, and am finally ready to consciously use my Self & yoga as a tool for change in my life. Trouble is, I’m not sure what to do. I never had an intention beyond “love thyself” in former classes, and the last few weeks I’ve spent getting reacquainted with yoga. But now I need an intention—I’ve never felt good categorizing or settling on a single thing for myself, whether it’s sexuality or religion or disease. I don’t want to devote myself to one thing, I want to experience them all, so the labels I do use are usually complicated—“Eclectic Pagan”, “sapiosexually panamorous”. I’m a poet—at least that I can settle on—I like words, I like descriptions, I was made to define and expand upon everything I experience. One word, one idea just won’t do it for me.

A yoga teacher, who’s classes I’ve been to before, described my practice to a mutual friend as pain. Albeit, her classes are Vinyasa (Flow) classes, and I’d say a 7 on the 1-10 Unofficial Difficulty Scale o’ Yoga. So yes,I was in pain during most of her classes—but I found her energy and style of teaching so uplifting I chose to take those classes anyway. I’ve thought about this, pain as a practice—am I causing myself pain by practicing? pain I have to work through? The teacher who made the comment continued, saying that I’d reach a point where the pain would no longer matter. I believe she referred to a change of consciousness, but when I first hear that I was undeniably pissed.

Anyone who has rheumatoid, fibromyalgia, lupus, etc, will tell you that one of the worst things to hear is “work through the pain”. This is not acute pain. This is not a stitch in your side trying to reach the finish line, or a cramped muscle, or a bleeding wound you can sew up. There is no before and after, this is chronic pain, this is waking and sleeping and breathing, pain is not a few moments but your life. By working through—ignoring—acute pain that you feel, you are probably causing irreversible damage to yourself. And I guess you can argue that with any pain, but then I think about the pain that signifies change, acute pain. Something that comes on all of a sudden, something you can forget about once in a while, something that will fade. The death of a loved one, breaking a bone, building muscle. That is the pain we need—the kind that allows growth. Chronic pain, I believe, causes damage without growth (as we were not meant to live in pain), and arises when we hold on to things and refuse to accept what is. When we refuse to surrender and accept the thing that caused the pain, that is what damages us. (And of course, to be explored another time: what I am I not accepting that has manifested into RA?)

Unless you have gone through chronic pain, do not tell me to work through my disease, my pain. Unless you have said disease, an in-depth background in physiology, or are my mother/best friend, you probably don’t understand what you’re saying. (And if you are my mother or friend, you still probably don’t, but we understand each other). When I leave the classroom, the mat, the job, I’ll still have this ache or that flare. My immune system doesn’t sleep, my fingers will not reform when I leave your presence. Getting out of bed is working through the pain. Living is working through the pain. If my practice is pain, then so is my life, as terribly cliché as that sounds. But then, aren’t we supposed to extend our mat into our everyday life, and act from a place of love and acceptance in our mundane encounters and not just in yoga class? I suppose this is why I’m having a hard time “deciding” on an intention for my practice, because to me ife is part of my mat and vice versa. My only “intention” in life is to do my best, to act from a place of love, to strive to be closer to the Divine—that is, happiness, eudemonia—in all that I do. It unnerves me to bring such a vague concept to the mat, for if it isn’t a specific intention I find my mind wandering. I still get a spiritual experience, but not as strong as I’d like. (Or perhaps, not as strong as I feel I *should* get. Hmm.)

Four times now in the past year I’ve drawn Medicine Cards in reference to my yoga practice, and always gotten the same two—Dolphin and Turtle. Dolphin signifies mana, or life force, and connecting to that life force through the breath. Turtle signifies the bounty of mother earth, and using one’s boundaries properties. So before my stretch class tonight I drew Turtle, for the second time, and read it again—I realized, especially after beginning Susun Weed’s Healing Wise, that one way to abundance is through surrendering to the Mother Earth, who in turn surrenders to you. I’ve had a lot of problems with energy and feeling constantly drained/numb, and also have always had issues with security and trust. The idea of giving away physical things has always scared me, I remember identifying so strongly with the things I owned and took into me (food) that disrupting any of that—losing things, giving things away, sharing—made me extremely anxious and hostile. I remember around 8 ot 9 struggling to feed myself, analyzing and planning my meals for maximum nutritional affect, but feeling guilty for eating any more than my sister because I knew we were on a tight budget. The idea of dying and no longer being “me” has kept me up at night as long as I can remember. I’ve gotten a lot better since it was shown to me, again and again, “you get what give”. The generosity of the Universe only extends as far as you do. So tonight in stretch class I gave everything to the Everything, selflessly, but with the faith and trust that S/He woud love me right back. I gave away the new opening I could feel in each muscle, the discomfort, the tingling energy rising up. And she gave right back—I breathed a little deeper into each pose, the idea for this post slowly surfaced in my mind. You eat me, I eat you. The teacher, a kind woman, leaned over to correct my pigeon toes and there were silver turtles dangling from her wrist.