Friday, July 30, 2010

"Build a Bridge Out of Her!": On What It Means to be Called "Witch."

"Who were the witches? Heretics or healers, members of a psychedelic cult, worshipers of pagan gods, or merely women who were not afraid to fly?" -- Erica Jong

LivingSocial: Books is Facebook's best application for bibliophiles. It keeps for you a list of what you have read and what you want to read, and suggests things you might like based on how you've rated books in your collection. And today, LivingSocial: Books told me I might like Erica Jong's Witches. "Like" turned out to be an understatement. I work in the college library, so today after work was done, I hustled up to the "stacks" on the 3rd floor and found it. Then I took myself to the coffee shop, bought a frappe, and opened it to read. I was hooked from the first line.

Beautifully illustrated by Joseph A. Smith, Witches is both a factual history of religion and myth and a collection of fanciful, humorous, (and often brutally honest) poetry and prose dealing with the Witch in all her reincarnations, from the honored Mother of All Things to the haggard, warty crone of Disney movies to the 21-st Century neo-pagan with her organic food and hybrid car, and everything, above, below, beyond or in between.

"What is the witch's heritage?" Asks Jong. Her great, great, great, great, great ancestress is Ishtar-Diana-Demeter. Her father is man. Her midwife, his fears. Her torturer, his fears. Her executioner, his fears. Her malignant power, his fears. Her healing power, her own."

And now I shall tell a story. When I was a teenager, my favorite movie was Practical Magic. Even today I can quote it. I had no concept of ever becoming what is these days called "witch"; I was just a girl in love with the idea of magic. Isn't everyone? We have Harry Potter and "The Sorcerer's Apprentice," Santa Claus, the Tooth Fairy, and the Easter Bunny. We like the idea of carpets that have been bewitched to fly, of lamps that spew forth genies to cater to our hearts' desires. The idea of magic is so entrenched in our everyday lives we hardly even notice it anymore. The idea of cats having nine lives? Magic. Believing that if we express our wishes fervently enough to a certain deity, the universe will somehow tip its natural balance into our favor and grant us better health, more money, fairer weather or better employment? Magic. The concept of Transfiguration (whereby bread and wine become the actual body and blood of Christ as you partake of them)? Totally magic. And I'm not saying magic is a bad thing -- simply that we classify it according to what serves us best. If it can give us wealth and riches and longevity and renown, or conversely if it can curse us, cause our hair to fall out, blight crops and bring plagues, it is called magic -- depending upon whether we want to bless or blame it. If it is benevolent and parental and can grant us eternal life, it is called faith, or, on the flip side of the coin, when it takes away life or "causes" an earthquake or "allows" a flood, it is called "God's will." Similarly, we have split the concept of what it means to be called Witch: there was a time when the ones now called witches were simply adherents to the ancient concept of the divinity of the female as the giver of life, or simply herbalists, healers or midwives. We don't think that way anymore. Now Witch has a negative connotation: it brings forth images of pointy hats and green skin and snakes and toads and evil cackling over cauldrons bubbling with some nasty brew.

I could give you a lesson about why this is so. I could play the beleaguered feminist and spout lines condemning patriarchy and the forcible introduction of a male-dominated religion into a society that honored and appreciated women as a means of political control, a way of assuring that the rich stayed rich and the poor stayed poor. (These days we call that "social policy".) But I won't. I will get back to the story. (If you've stayed with me this far, buy yourself a reward.)

One night, I took Practical Magic to a sleepover at my grandmother's house to watch with my cousins. She took one look at the title and declared, "Though shalt not suffer a witch to live." I was indignant and annoyed. As with most things found in the Christian Bible, I considered this to be ignorant and unfairly judgmental on principle. I wasn't even aware, back then, of the complex history of Witch as a term or of the Bible as a game of Telephone played with the written word: a document translated over and over and over and over again until what it originally said was barely intelligible. I wasn't aware of the time in history during which the Bible was written, or what the people in that time thought or believed or acted upon. To me, it was just a matter of basic fairness: don't condemn something unless you have first studied that thing, unless you have learned all you can about it, unless you have dug down to the marrow in its bones and fairly considered all sides of it. Don't buy into something because you found it in a book or saw it on TV or heard it on the radio, or because your mother bought it, and her mother bought it, and her mother's mother bought it. That very quickly becomes the blind leading the blind leading the blind, and pretty soon everybody drowns in the ditch.

I also didn't know, at that time in my life, that I was already starting to become one of Jong's women who were "not afraid to fly." I was operating on what was and has always been a matter of common sense to me. One of my biggest failures both then and now lies in my tendency to automatically assume that what makes sense to me also makes sense to everyone else. (That being said, don't feel bad if you have no idea what I'm talking about. Sometimes even I don't know what I'm talking about.) What I did know was this: that I chafed at the bonds of Christianity. That something about it felt wrong to me; that I found most of its principles to be either confusing, contradictory, fundamentally unfair, and sometimes even stupid (such as the idea that a woman who is raped must marry her rapist, that braids are forbidden, and that menstruation and childbirth make a woman ritually and spiritually unclean.) I knew I had a problem praying to a God who would supposedly forgive my mother for beating me, spitting in my face and locking me outside in the rain faster than he would forgive me for dishonoring her, who wouldn't have as much of a problem with the people in my life who closed their eyes to my pain and stopped their ears to my voice as he would with me for the things I did in my misguided attempts to make that voice heard. I knew that I hated the idea of fearing God, and of acknowledging shame I didn't think I should have to feel for every little mistake I made. As Jong says:

"Witchcraft was -- and is -- a joyous, ecstatic religion in which the gods and goddesses are better served by merriment than by moaning."

What I hated about Christianity, then, was the moaning. Often I wanted to leap up from my pew in South Liberty Church of Christ and run screaming out the door. I could not, would not, close all the doors and windows to my brain and trap one notion of God inside like an over-curious cat. I wanted to learn. I needed to know things. I needed a faith that would allow me to hold my head up high, a faith that did not encourage me to repent as much as it encouraged me to think, a faith that pulled me out of my lonely little corner and told me it was alright to dance. But first I closed myself in a box of my own making and became a Baptist zealot who drew a clear line between Heaven and Hell and forced those around me to choose a side. I lived in a world of moral absolutes. When I grew out of that, I put Christianity on like a dress that didn't fit and wore it because I thought I must. I chose Episcopalianism because of its vast difference from anything else I'd tried, but in the end it was the same for me: the dress was still the wrong size. I still felt stifled. I know people for whom that particular dress fits very well, and I encourage those people to wear it. Of course, I will also encourage those very same people to take it off if they find they no longer like it. I am an equal opportunity spiritualist: I won't put a cage around you if you don't put a fence around me. For that reason, I call myself "spiritually eclectic," preferring not to take on the assumptions that come with the title of Wiccan or Pagan or Christian, or even Witch -- though I find that I kind of like Witch, and if pressed to definitively classify myself, will say it.

Witch: from the Teutonic "wic," meaning "to bend." OR from the Indo-European root "weik," a reference to religion and magic. (Paraphrased from Jong's Witches.) The word is either of these or both of these or neither of these; no one knows for sure. But I am both strong enough to bend and a believer of the "religion of magic" (Defining magic how you will; a spade is a spade unless it's a duck,) so Witch it is, and proud to say it.

"She is the witch. You know her, yet you do not know her. She has been with you always, yet she eludes you. She is your mother, your sister, your innermost self. You love her and fear her. You hate her, but are drawn to her. She is the witch. You wish you were she. Except when the time comes for burning."

Sunday, July 25, 2010

The Taming of the Screws

I've had a rough few days. Earlier this week my brand new iPod got stolen from the basket of the Death Machine while I was sitting outside the coffee shop with my nose stuck in a book. It was wrong place, wrong time: evidently some punk kid was going on an iPod-stealing bender that day; he nabbed another one from someplace else in town. I wonder if he stole it right out from under its owner's nose? He did with mine -- the headphones were still around my neck when he palmed it from the basket on the front of my scooter ad just kept walking, carrying my expensive electronic device with him down the street and leaving me sitting there gaping at him with a pair of five-dollar headphones and nothing attached. I ran into the shop and had Jared chase him down the street, but the kid could not be caught, nor the iPod recovered.

The day following this little fiasco, I tripped over my corded phone on my way out the door to work and ripped it from the wall. With it came the careful tape-and-shaping-wire rigging job my Dad did for me some months back to hold the clip from the end of the phone line into the antiquated wall jack. I tried to clip it back in, but the plastic part inside the plate on the wall came apart and had to be replaced. I must say that I tried valiantly to do this myself. After discovering that I could purchase 2 dollars' worth of equipment from the hardware store instead of paying Verizon $95 and waiting a week for the repairman, I cruised down to YBC and bought a new phone jack. I read the instructions on the back: unscrew the old plate from the wall, connect the colored wires from the back of the old plate to the corresponding places on the back of the new plate, screw the new plate to the wall and plug the phone back in. Voila! Simple. A monkey could do it.

Or so I thought.

First, I fought with the screwdriver. I always fail to remember that I have no fine motor skills until I try to use them and mess something up. I stripped a screw and hassled with the damn thing for almost an hour before finally succeeding in pulling the plate off the wall, only to realize that there was a second set of screws under the first set and a third set of screws under those. By the time I got down through the third set of screws to the wiring, I was so pissed off I could have happily hacked that entire part of the wall away and thrown it out the window, phone line and all. But I persisted, because I don't like to quit things once I start them and because I had in my mind the vague notion that succeeding in my endeavor to replace my own phone jack would somehow prove to the world, once and for all, that little femme lesbians with a palsy who barely know the difference between different types of screwdrivers and who have barely ever even had to plunge a toilet can be mechanically minded. I also desperately wanted to be smarter than a monkey.

With these oh-so-lofty goals in mind, I tackled the job of connecting the wires. It proved to be too much for my bad eyes and my clumsy fingers. Two hours later, when Dad came in carting a bottle of red wine (ESP??) I was sitting on the couch with my head in my hands, and a colorful display of unconnected wires was dangling from the wall.He tried to help. He stripped the wires, connected them, screwed the whole mess in tight and then connected the phone. I picked it up. Dead. He tried it again, inspecting the wires, reconnecting them, plugging in the phone. Still dead. He tried it a third time. Still dead. By this point I was swigging Fisheye like the town drunk and imagining myself hemorrhaging nonexistent money. I was also hearing unmistakable monkey noises somewhere in the back of my head. My frustration boiled over, and I started to cry. "I just wanted to --"  *sniffle* "Do it by myself -- " *Sniffle* "And instead I spent the whole day on it and screwed it all up! I'm dumber than a monkey!" *Sniffle, wail.* I have always been a little overly catastrophic with my emotions. Thankfully, my Dad knows this by now. He played the voice of reason calming the blubbering female (who at this point felt a lot less like Superwoman bettering the world for feminists everywhere and a lot more like a totally helpless little idiot-woman,) and by the time he left I was somewhat calmer. I carted my laptop down to the coffee shop to let everyone know I would be off grid for the week.

On the way home, some of my neighbors hailed me from the gazebo to discuss the stolen iPod. I told them about the phone.  My neighbor Stanley went to his apartment and got his tool belt. He dangled it over the balcony and called down, "Meet you at your door." I stopped bitching and went up.

Stanley fixed the damn thing in ten minutes. Ten minutes! He inspected it, made hmming noises, and then did something with his pocketknife. He beckoned me over. He had cut all the wires to the same length and then stripped them further down. "You did everything right," he said. "But look here." He twisted the green wire just the tiniest bit, and a piece of it snapped off in his hand. "It was broken down where the insulation was holding it together. You just couldn't see the broken part." He hooked up the wires again, screwed the plate into the wall, and called my phone from his cell. I was never so delighted to hear a phone ring in my whole life! I could've hugged him. I offered to cook for him, (my Dad's idea) but given that I had already disclosed the little factoid that I have absolutely zero skill in the kitchen and that my particular specialty happens to be Lean Cuisine -- or char -- he respectfully declined. That was okay by me. I didn't need any more help feeling like a 50s sitcom housewife.

I would like to turn this into a fable and give you a moral of the story, as in: the moral of the story is: "never question your genetic make-up over a failed attempt at something," but I am a creature of habit. I have tried and tried to learn not to be so dramatically emotional when frustrated, but the truth is I'll probably do it again. I have to say that my patience has improved considerably, however: it took me 3 hours to get to the boo-hooing this time, whereas before I would have simply started crying right away. Perhaps this is not an admirable thing to admit about myself, but it's the truth. Growing up, nothing was allowed to be wrong: there could not be a wrinkle in my bedsheets after making up the bed or an imperfection in the polish if I tried to do my nails. I was punished for dumbass things like holding my fork the wrong way at dinner or accidentally slipping the hinge on a clothespin. Some of that has stuck with me. I was fully twenty years old before I stopped flinging my hands up to protect my face whenever I thought I might have done something wrong. I am a work in progress. I suppose then, there is a moral to this story. It's an Alan Jackson song, and I am an absolute genius and smarter than a monkey after all! Ha!

Tif
Just be patient; I'm a work in progress -- Alan Jackson

Saturday, July 17, 2010

Not in Kansas Anymore

"You know, if you never learn to flirt you will die alone with a thousand cats who all have middle names. The National Guard will have to come in to clear away the sea of books so someone can get to your body. They will find you buried under the Steinbeck."

The Organs and Concord to Seas concert at Avenue 209 was just starting up when the redhead sat  down next to me. She plopped a huge tote down on the table, rummaged around inside, and pulled out paper and a pen. She introduced herself, but I couldn't hear her name over the music. I introduced myself. I don't think she heard me, either. She bent over the paper and started writing in huge, slanting loops; I went back to my book.

Hey, said the little voice in my head. There's a pretty redhead sitting next to you. Any self-respecting  single lesbian on the planet would take full advantage of that.

I studied the redhead out of the corner of my eye. Her skin was milk-pale, her arms a mass of freckles. She had a fleur-de-lis tattoo on her bicep. Her green eyes were rimmed carefully with mascara.

Say something to her, you half-wit.

I waited for a lull in the music. "This is a great place to write." I offered. She looked at me blankly, asked if I knew the date. Scrawled my answer at the top of her paper. Again, I turned to my book.

You completely suck as a conversationalist. You're absolutely hopeless; you know that, right? Next time you score a chick's number, it'll be the director of your assisted living facility.

Screw off.

Just saying.

Fact: I love to talk. I can talk a thousand 3-point vocab words a minute if you let me. I can talk the bark off a tree and the hide off a squirrel. But when it comes to women, I become dumb as a stump. "Dogs need walking," was my crowning-glory line, the one I spouted off to a woman I had a crush on a few summers ago when I saw her in the alley with her dachshund on a leash. I haven't lived it down yet. My attempts at flirting are either pathetically obvious or too veiled to be noticed. I would love to find Happy Medium Land, but I'm pretty sure by now that no such place exists. I ran through my options:
 
Offer to buy her a coffee. Too obvious.
Ask her what she's writing. Too nosy.
Ask if you can bum one of her cigarettes. You stopped smoking three years ago.
Keep reading and hope she likes intellectuals. Okay.

For the billionth time in my life, I sat wishing I was still the deliciously curvy little 130-pound walking lady-slayer with the hair to her butt that I said farewell to at nineteen. I thought I was ugly then. I'm dying to get back there now. Not that I was slaying ladies then, either. Then, I was walking a path in the carpet of my bedroom and worrying myself dumb over the idea that I might be gay. Then, I spent a night tangled on my stupid college-issue plastic mattress with a man who did not attract or arouse me because I was afraid of the alternative. Realizing my own lesbianism was an experience kind of like being slammed into by a freight train while sitting on the tracks in a car that won't start. It took my middle-class, bread-and-butter world of carefully entrenched religious patriarchy, turned it upside down, and shook it till everything fell out. I had no idea what to do with all the bits and pieces.

It's funny: when I realized I was attracted to women, I started seeing Sapphic goddesses everywhere. Maybe that's normal. I have no idea. All I knew was that suddenly, I was surrounded by such an array of desirable women that my brain fogged up and I checked off the planet for a little while. That semester I had a Classic Lit class, and it's a good thing my reading comprehension was good, because I spent too much time staring at theprofessor to actually absorb anything she had to say. All the lusting I had had neither the time nor the inclination to do earlier in my adolescence caught up with me, grabbed me by both hands, and dragged me along with it to places I was afraid to go. In high school, I pretended to like boys because all my friends did. I put posters of Leonardo DiCaprio on my walls because my friends had posters of boys on their walls, and it was "normal" and therefore I copied it. But I didn't understand it. I hadn't quite articulated the fact that I might like girls (given my sheltered upbringing, I was only half-aware that such a like even existed,) but I knew that whatever my friends felt for boys was not something I felt. I couldn't have cared less. A boy took me to the Prom my senior year and I genuinely liked him, but when it came to intimacy, I felt wrong in my own skin. Something was off. Something about me was different.

And so began the amusement park ride that was a small-town girl from a backwoods church and Bible-quoting parents arriving at the gates of homosexuality. These days, I'm cool with it. I'm comfortable in my own mind and with my own theologies, and I couldn't imagine being anyone other than the woman I am. If you want to know whether or not I am gay, I will tell you. If you don't want to know whether or not I'm gay, I will tell you. Then, I was imagining gruesome scenes from Dante's Inferno and the destruction of Sodom. I was in moral Hell. I thought for sure that if anyone found out I'd be cast out of respectable society and sentenced to wander the earth with "Lesbian" tattooed on my forehead. It got easier when I moved away. Pennsylvania was a chance to start over, fresh and clean. I began to realize that I could stop living for my parents and my grandparents and my aunts and my uncles and my preacher and everyone else and start living for myself: after all, no one but Tiffany can make peace with Tiffany before she closes her eyes at night. I've learned to find contentment in lesbianism. I know I could completely shock myself and fall in love with a man tomorrow -- nothing is ever completely out of the question; sexuality is a pendulum, etc, etc -- but I'm not trying to force that to happen anymore. I'll be quite fine and perfectly happy if it doesn't: to me, loving a woman is as natural as breathing. It's the other side of the coin that feels wrong. If I could get over this little socially-gauche-idiot-savant-can't-flirt-to-save-her-life- bit and actually get a love life, I'd be peachy keen. Trust me: you guys will know when it happens. I'm seriously considering taking out a billboard the next time I get a date

Posting From Over the Rainbow,

Tif



 
 

Thursday, July 15, 2010

Of Cabbages and Kings: Why Everyone, Everywhere, Should Read

Here is a thing about me: books. I love them. Actually, love is not quite the right word. I respect books. I admire them. Books make me happy: the smell of a book, the rustle of a page, new books with shiny, hard covers and books with no covers at all, books with worn spines that fall open by themselves to a favorite page when you pick them up, books encased in pristine plastic wrappers just waiting to be opened. To me, heaven is a Barnes and Noble bookstore where I can read all day and never have to leave, complete with a cute little dark-haired, dark eyed barista who keeps me permanently supplied in chai lattes and rubs my shoulders when I sit too long in one place.In the mansion of my dreams, there is a bright, sunny room crammed `with books from floor to ceiling and I ride a book ladder around on the shelves like Belle in "Beauty and the Beast." I know, I know: I'm hopeless. A pathetically enamored bibliophile with a little too much time on her hands and a fresh batch of books from the local library inviting me to dive into them like water and stay up swimming in words around the clock. I've been this way for as long as I can remember.

Books were an escape for me when I was a child: somewhere, on some page in some book, I could find someone whose life was worse than mine, or whose life was so much like mine I could tell what their dreams were, what they thought and how they felt. Oddly, the life of the empath I now lead started in the pages of books. I honed my natural skill on fictional characters; they taught me how to read pain in myself, and now I read it in others. A tic, a glance, a shift of the eyes -- it doesn't take much until I'm sharing your energy. I read people. I read books. It's become almost the same thing, now.

Books were also tactical manuals for me. I was drawn to the stories of survival against the odds, stories of people who crawled through Hell and came out holding their souls in their hands like trophies no one expected them to have won. I cut my teeth on the classics: Bambi, The Secret Garden, Uncle Tom's Cabin, Rawling's The Yearling, Watership Down. I plowed through Steinbeck: Of Mice and Men, The Grapes of Wrath, Cannery Row. I read Faulkner, Twain and Hawthorne. In high school, I clung to The Canterbury Tales, Leaves of Grass, and Dante's Inferno like I would drown at sea without them. In college, as an English major, I read Beowulf, Chanticleer, Sir Gawain and the Green Knight. A little while later, I fell in love with poetry like it had been waiting around for eons just for me to discover it and delighted in Maya Angelou, Adrienne Rich, e.e. cummings, and the incredible works of gut and viscera and superhuman fortitude born of the  Harlem Renaissance.

These days it's much the same. I just finished Ambrose Bierce's The Unabridged Devil's Dictionary. I'm working on Maya Angelou's All God's Children Need Traveling Shoes. I've read Lillian Faderman's Odd Girls and Twilight Lovers and Walter Wangerin's The Book of God: The Bible as A Novel. I've also found a liking for well-written fantasy and science fiction. The Firebird anthologies are a wonderful treat. I like historical fiction a great deal as well: Anita Diamante's The Red Tent held me absolutely spellbound. Today at the library I picked up The Birth of Venus by Sarah Dunant. It looks splendidly toothsome. I've also developed a certain enthusiastic affection for Young Adult novels. Some of them are crap -- totally unoriginal dime-a-dozen-novels about fairies and vampires and chicks locked up in towers, you know, where you can smell the plot line from down the block before you even make it into the library and come across the book. But some of them are really, really good. This is All: The Pillow Book of Cordelia Kenn by Aidan Chambers was so good the first time I read it that I've plunged into it once more, even though it's monstrously huge and takes forever to read and I already know I'll be slightly pissed off at the ending. Laurie Halse Anderson's Speak is incredible, as are Nancy Farmer's The Ear, The Eye and the Arm and A Girl Named Disaster.

Anyhow, I'm not listing all these books to make myself look impressive or anything. I genuinely want to share them, to shove them into your hands going, "Read this. And this." Books shaped my life. From books, I learned the languages of survival and hope and persistence. I learned characters, knew them like kin and talked to them when I was lonely. A few will always be dear to me: Laura Ingalls, Hitty, the antique doll from Rachel Field's novel Hitty, Her First Hundred Years, Ada Price from Barbara Kingsolver's The Poisonwood Bible. I honestly don't think I'd have made it through my childhood without books, and I am thankful that when God closed the door that was my physical ability, God opened wide a bank of windows that led me to books, and to the understanding and comprehension and admiration of books. Books, my friends, are good for the soul: because every once in awhile, everyone needs to escape to a place where an entire universe can exist on the back of a turtle, where children talk to lions and magic is real. So go, go, and do yourself a favor! Pick up a book! You never know: it might change you.

Tuesday, July 13, 2010

Pity, Party of One

"What are you bawling about?"

It could've been my mother speaking. Those exact words, in that exact tone, "What are you bawling about?" I half expected it to be followed with, "Suck your snot some other time," or "Those crocodile tears don't work on me." I nearly had to pinch myself to make sure I wasn't standing in 1994 with tangled hair and dirt on my face.

"I'm not bawling about a damn thing, Bill."

Good old Bill, with his unwashed hair and his grimy sweats and his gut out to kingdom come -- Bill, whose job it was to drive me to State College to see Dr. Ayleward at Geisinger Medical Center, whom I had always liked way more in theory than in practice, the guy I talk to twice a year at the most -- Bill had the fucking gall to ask me what I was "bawling" about. Fiercely, I wiped away the one tear that had gathered at the corner of my eye.

"Well, you have tears."
"I'm just a little upset."
"I can imagine how upset you are."

No you can't, asshole.

I didn't say it. I turned to the window and watched the mountains roll by. I felt slightly ashamed of myself: for one, only those I am closest to are privileged enough to have seen me cry. I haven't shed a tear in front of anyone for the past seven years unless I damn well meant to do it, primarily because every time I cry, even when I'm alone, I hear something like, "What are you bawling about?" Secondly, looked at from a face-value perspective, it appeared that I was crying over not having a horribly disfiguring autoimmune disease. I took a second to wonder whether or not I should be crying at all. I finally decided that if I had to cry, I'd do it later. Alone. Me myself and I would cry together, since the three of us knew what I was crying about in the first place.

I really am glad I don't have a horribly disfiguring autoimmune disease. One of my biggest fears was getting scary bird-lady hands. Now that I know that won't happen, I'm unspeakably relieved. I guess my problem lies in the idea that I was hoping, for once in my life, for someone to say: "Here, Miss Bernard, is the answer, and this is how you fix it." Instead I got the same answer I've always gotten: "It's just a new part of the palsy ... there's nothing we can do." You just have to put up with it. We're sorry. Etc, etc, etc.

The rheumatologist actually looked sad today when he gave me the same old lines, like he knew how often I'd heard them before. "I know you're in some pain," he said. "Sometimes a lot of pain. I know you don't feel well. I know you're sick. I wish there was some way I could help, but there isn't. I'm sorry."

I can't help you ... I'm sorry.

I've heard that from so many doctors now. I've gotten so many secondary side effects no one prepared me for. When I was a kid, my mother was too busy trying to convince herself nothing was wrong with me to give it to me straight: This is what will happen. Get ready. As a child, I could run. Jump rope. When I fell, I could spring up from the ground unfazed. Now I walk half a block and my ankles swell. I couldn't get half an inch off the ground if my life depended on it, and when I fall somewhere outside my own home, I have to crawl to the nearest building and use a wall to get up while everyone around me stares. Over the past seven years, I have watched my life become cluttered with mobility equipment: canes. Crutches. A walker. A wheelchair. A power scooter. A shower chair. A special toilet seat. Grab bars. Low-vision software. At the pharmacy, I have to ask them to clip the edges off all the caps on my prescription bottles so I can pry them open. I recently made the switch to Velcro shoes because I can no longer bend down enough to tie mine. It seems that I'm either regressing to toddlerhood or aging  five years a day, and there's no way I can stop it. I've done the therapy, I take the medicines. Now I'm just watching everything slip away, and I'm scared. I'm so afraid. I'm afraid it's all my fault.

When my mother finally stopped my daily therapy when I was sixteen, she sneered at me before she left the room that morning and told me matter-of-factly that I'd be in a wheelchair by the time I was twenty. She was right: I was. I can't help but think that somehow, I'm doing something wrong. If I had let her continue for two more years, where would I be? I have had people tell me that working me to the bone and leaving me bloody and shaking did more harm than good, and that makes sense. I want to believe them, but I don't know what to think. If I still had leg braces, would that help? If I went to physical therapy more often, would that help? Or would I just be adding blistered, pinched, aching feet and twice-weekly absolute exhaustion to my list of problems? It seems that no matter where I turn, there is some monster waiting to jump me. If I went to PT, I'd have to fit it between classes and I'd be too damn tired to do my homework two nights a week, at least. If I got leg braces, I'd walk even less than I do now because my feet would hurt with every step. I'd have to buy knee socks and extra Velcro and moleskin to cover the fastenings on the insides. And all the little things Medicaid doesn't pay for add up, like crutch tips and tires for the manual chair, which they refuse to replace or upgrade because I also have a power scooter, which strands me more often than not.Having a disability is a full time job that takes money out of my pocket instead of putting money in. I can't keep up with my friends; I can't climb in and out of the car, and I'm always the brunt of gimp jokes, like I need another reminder of how ridiculous I must look. Even my college contrives to keep me out, with its inaccessible classrooms and tiny, ridiculous excuses for elevators.

Anyhow, now I've gone and totally blown whatever pride anyone ever had in me for being a chin-up sort of girl. I try to be admirable, but I'm tired of pretending none of this bothers me. I'm tired of pretending I'm not afraid. I am. I am afraid. I'm a 25 year old woman who really wants her mommy, but I know all I'd get if I called up the woman who should, above all others, want to be my mommy, all I'd get is, "What are you bawling about? There's nothing wrong with you."

Monday, July 12, 2010

Odd Kid Out

A few weeks ago, I made the request to all my family on Facebook to send me photos of myself as a child. I only had 3: a baby picture I stole from the family album the day before I left home to use in the slide show at my high school graduation, and two others that mysteriously appeared in one of my own photo albums without me having the foggiest idea how they got there. I was feeling a lack of personal history that wasn't steeped in violence, something other than the crap that creeps into my nightmares. Yesterday, a fat manila envelope arrived in the mail from my great-aunt Carolyn. I hurried upstairs and dumped it out on the coffee table, and it was the pictures I wanted: lots of them. Snapshots and wallet photos and portraits chronicling my entire childhood, from newborn-- when I still had the oxygen tubes in my nose and was tiny enough to fit perfectly into my father's hand -- to an 18 month-old who couldn't yet focus her eyes because the surgery to correct them wouldn't happen for several more months, to a precocious preschooler in pink, frilly dresses. Kindergarten. First grade. Various Halloweens. Senior pictures. It was more than I ever could have imagined I'd get.

As it seems to always go with memories, sometimes you laugh and sometimes you cry. I did both. I was sitting there going through all those pictures grinning like a fool and wiping my eyes at the same time. It got me thinking about things, and then I got an email from Sarah and decided to sit down and write this entry: because I don't think you can have a blog about living with disability without at least describing a little bit about what it was like to grow up with one. And by "grow up" in this instance, I mean specifically "be around other kids".

Kids, my friends, can be mean little bastards. Don't get me wrong: I kind of like them these days. I even want a couple. But that doesn't change the fact that there are kids in the world who seem only to exist to make another kid's life hell. I met some of those kids during my tenure at public school. I don't remember kindergarten being a problem, but by the time I made it to first grade I was plagued by bullies. They called me names, quacked like ducks and mocked my gait when they saw me coming, hid my library books, stole things from my desk, and never let me play with them at recess. One of my teachers instituted the barbaric practice of letting that day's line leader pick the first kid who got to go out on the playground, who would then pick the next kid, and so on and so forth. I never got picked. I was always last, standing there alone, and the teacher would finally tell me to just go play. I'd still like to punch that woman in the face for the daily humiliation her brilliant idea caused me.

On a day I will never forget for as long as I live, I was sitting at lunch with my fifth grade class. The boy next to me was the school bully, out to make a name for himself by traumatizing as many of his classmates as possible. When I wasn't watching, he spat in my food. Not inclined to inspect my food while in the process of eating it, I took a bite. The entire table erupted into laughter. The boy told me what he had done after I'd swallowed. I bolted from the table and ran to hide with tears streaming down my face, all the kids still laughing behind me. I chose a bathroom as far away from the cafeteria as I could get, up the hall and down a flight of stairs, where I leaned against the marble ledge above the sinks and sobbed till I thought I'd break in half. One of the first grade teachers found me and held me while I cried myself out, then helped me wash my face and led me back to class. It wasn't the last time I cried over being teased: I was the odd kid out. Every kid gets teased; I know that. But kids with obvious disabilities like mine get absolutely tortured. There was no way I could hide the pitching gait or the giant leg braces or the bad hand or the specially padded chair meant to ease the strain on my twisted back. I was too visible. I always have been.


Things are a lot better now that I'm an adult, but sometimes I still feel as though people are secretly staring at me and whispering about what a freak I am behind my back. I hide my insecurity by being overly friendly: I'll go up to a complete stranger in the campus dining hall, introduce myself, and sit down. I don't want anyone to see how unsure I really am.

Someone once asked me what animal I would be if I got the chance to shape-shift for a day, and I said a panther: they're sleek, quiet, fast and practically invisible; all the things I'm not. I'd love to prowl the night on silent paws, for once not drawing attention to myself, for once not so much in the public eye. Secretly, I envy quiet, stealthy, graceful things: I will never get the chance to be one. I am a woman who can't even tiptoe. But I make the best of what I've got by having a personality that's worth paying attention to, since I'm going to be noticed anyway. I talk loudly and laugh at top volume, un-apologetically. My smile is as big as my voice. I have a quick wit and a sense of humor to match, and I love being that way, but don't let me fool you: underneath that natural air of confidence is a girl in knee-high braces trying to fit in, the odd kid out as a grown woman. You don't have to cater to her, or walk on eggshells around her, but if you happen to catch a glimpse of her, try to be kind. She and I will thank you for it.

Wednesday, July 7, 2010

Humidity Legs

Lateral aspect of right leg. (Tuberosity of ti...Image via Wikipedia
It is 4:47 a.m, and I am running on approximately 2 and a half hours of sleep. Humidity legs woke me up. "Humidity legs" is what I have taken to calling the nightly bouts of muscle discomfort that hit me around this time of year every year, when the thermometer is maxed out and the air is like wet cotton clogging up your lungs. Maybe it's not very creative, but it is what it is. It works.


Humidity legs doesn't cause what I would describe as traditional pain: it's not sharp, or stabbing, or throbbing or any of those nice, descriptive adjectives generally used to describe pain. The closest I can come to describing it is as a dull, persistent ache in the quadriceps and hamstrings that almost feels like pressure building up in the muscle, giving you an urge to stretch that feels ok while you're doing it, but which ceases to alleviate the problem as soon as you stop.

To deal with humidity legs, I take something called Flexeril. Quite honestly I could use a muscle relaxant of a higher caliber, but it would screw with my stomach too much. I know; I've tried.
Last time I took anything stronger, I was sick as a dog for a week. I have discovered, though, that when I take a Flexeril and one of my Ativan at the same time, I get better relief than with just the Flexeril alone. Apparently Ativan, being a drug commonly used to treat panic attacks, contains a mild relaxant of its own.

Sometimes I have better luck with this than other times. I took the stuff half an hour ago now and it hasn't kicked in yet. Sometimes it doesn't, when the humidity is truly phenomenal. which forces me to have to make a decision: do I take another dose of Flexeril and risk getting sick or do I stay up and wait it out and maybe function all day on 2 hours of sleep? Neither choice looks very appealing to me, but today I'm doing the wait-it-out method. Hopefully I can cram in a few more hours at some point before I leave for work this afternoon.

Tick, tock,

Tif

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Monday, July 5, 2010

Caged Bird's Glorious Fourth

Sand is generally annoying. It's gritty. It's hot under your feet. It gets into your clothes and your hair and works its way into crevices you didn't know you had. And if you're me, it's nearly impossible to walk on. I remember struggling down Patoka beach as a kid, flopping to the ground every few feet like a penguin soaked in grain alcohol. And I ambulate even less these days -- which I somehow failed to realize until I was standing in the grass at the edge of the beach, looking at all that annoying sand sloping down into the water. But it wasn't as difficult as I remembered. When I was a child, my mother was bent on making me do things myself. That's not a bad thing, really, unless you get to a point where you take off marching toward the water and order your kid to keep up without even looking over your shoulder to see how she's doing.These days, I have a Mom who isn't utterly and completely embarrassed by my presence. She offered me an arm, I took it, and before I even realized I was putting forth an effort, we were enjoying the coolness of the lake.

Water sets me free. Buoyancy is quite possibly God's greatest gift to the palsied. In the water, I can move: kick, jump, dive, stand on one leg and hop up and down ... On land, jumping with both feet, I can barely make it off the ground anymore. I am stuck. Chained to the earth. Moving is a chore. But add water, and movement becomes a joy. The main thing I want when I win the lottery and have ten bazillion dollars to spend is my very own indoor heated swimming pool, followed by a gigantic sunken bathtub with jets. If I thought I could grow gills, I would just live in the water full-time. Find Atlantis and buy a house there. Water is glorious. The tough part comes after I've been out of the water awhile, when all that kicking, jumping, diving and hopping I've been doing catches up with me and leaves me completely wiped out. After my swim yesterday, I laid out on the beach with my mom while my dad and my sister went geocaching. I dozed off, and by the time they got back, my organs were baking and I had a sunburn such as I don't think I've ever had before in my life. I'm pretty sure the backs of my knees are blistered. My bra straps hurt my shoulders. I've even burned my scalp. I now live in a world of ouchy -- but it was totally worth it.

And then there was the food. My Dad cooks out every summer on this old charcoal grill that looks like it's going to fall apart any second but never actually does. He refuses to buy another one until the grill collapses to the ground and sets the yard on fire or something. I gotta admit, though -- that thing does its job. We had an absolute feast yesterday: three kinds of chicken, grilled carrots, corn, potatoes, peppers, and squash; potato salad, and chocolate shakes for dessert (or as an appetizer, in my case.) Three words come to mind: Nom, nom, nom. It was delicious. By the time I pushed back from the table, I was full up to my eyeballs. Which are probably sunburnt.

Back home, I was experiencing the welcome and rare sensation of non-spastic legs. My entire lower body was made of wet spaghetti. I took a shower to wash the sand off and sat down on the couch to watch "What's Eating Gilbert Grape," whereupon I fell asleep before the sun had even set.Three hours later I was up for a cold sandwich and the pills I had forgotten to take, and then I went back to bed. I woke briefly sometime after four and then slept till one, and I haven't done much all day except laundry. Recovery time is a bitch for me -- but like I said before, it was totally worth it.

And now, friends, I must go in search of my aloe vera before my skin splits open and an alien is born. Love you, kiss you, hug you!

Tif

Friday, July 2, 2010

Tummy troubles

There are a few reasons my stomach is screwy, one of which you will not pull out of me no matter how much you wheedle, whine, and beg, so don't bother. Only Biz and Sarah "Feekis Maximus" Feeko know, and I'm keeping it that way. But the other reason I will discuss, because the other reason is palsy. Yep, palsy. Most people don't realize that Cerebral Palsy is a total-body condition. Have a muscle, any muscle? Then guess what: it's affected. The classification system doctors use is only a sort of quick-reference guide to what happens to be affected most. I, for instance, have a type of CP known medically as Spastic Diplegia -- "spastic" meaning stiff, and the "di" part of diplegia meaning "Two." People with this type of CP have two of the same limbs affected, so arms or legs. Although I'd say that in 99 percent of cases, it's legs, because I have seen a lot of people with Cerebral Palsy, and I have yet to come across any cases of diplegic arms. Which would totally suck, by the way. (Oh, and if you're wondering about the "plegia" part, your assumption is correct: CP is actually a type of paralysis. I cannot feel random sections of my legs.) But like I said earlier: CP is a total-body condition affecting muscles, and the stomach just so happens to be a muscle. Which I suppose means I am perpetually screwed as far as my digestion goes.

It didn't used to be this way. One of the sneaky things about Cerebral Palsy is the plateau phenomenon: people with CP generally reach a certain level of function as kids and stay there until their late teens, and then WHOAH! -- things start to happen. It's not actually a progression of the condition, because speaking in technical terms, CP is not actually progressive. I can't wake up with more brain damage tomorrow. I can, however, wake up with a new secondary symptoms, because the potential for them was always there to begin with. My stomach is one of those things. When I was a kid, I could actually digest my food like a normal human being. Now, more often than not, I swallow something and my stomach goes: "Huh? Oh, screw it." This leads to a lovely little thing called chronic nausea, which is absolutely mind-blowing in its insidious nastiness. I'll go to bed fine and then wake up puking. I have to be really, really careful about what I eat: tropical fruit is off-limits, as are reasonable quantities of dairy and too much fiber, believe it or not. Eat the whole wheat bread, but only two slices a day. Want fruit? Have a banana. Buy lactose-free milk. Want that nectarine? The ice cream cone? Better hope you're having a really good day, or you're gonna suffer.

Before my doctors realized what was up, I actually had my gallbladder removed at the age of 23 for the sake of a single stone. I was put on a medication called Reglan, which should never, ever, ever, under any circumstances, be given to people who suffer from depression. If you have a depressive condition and your doctor tries to foist this stuff on you, REFUSE IT. If you don't, chances are good you'll end up taking a header off your balcony long before you finish the first third of the bottle. There's actually a petition circulating to pull Reglan off the market. That's how dangerous it is. Ask for something called eyrithromycin instead, which is an antibiotic that does the same thing as Reglan without all the red-label side effects. It might make you hungry, but far better to be hungry than dead. (P.S.: I am not a doctor. Don't take this advice, go off and maim yourself, and then blame it on me. That's not nice.)

These days, along with the occasional regimen of above-mentioned antibiotics, I have become an expert at finding ways to control and/or quell persistent nausea. 1. Drink tea. Lots of tea. Any tea. Hot tea, cold tea, ginger tea. Drink tea with breakfast, lunch and dinner. It helps. I don't know why, but it helps. 2. Drink your beverages lukewarm if you can hack it. This prevents shock to the digestive system, according to my gastrointerologist. 3. Ginger. Ginger snaps, ginger ale, ginger root, ginger in capsule form. Inhale the stuff like there won't be any left in the world after tomorrow. 4. Chew gum. I have found that mint helps most. Chew it slowly. 5. After you eat, lie on your left side for awhile. This is supposed to help digestion. 6. Eat small, frequent meals instead of 3 huge ones. It's less for your stomach to handle. 7. There's a product on the market called Digestive Advantage. It works for me sometimes.

When all else fails, I have to take a prescription strength anti-emetic, which I hate because it practically puts me in a coma for at least 12 hours. I have fallen asleep in class and at work because of it. Some days (like today) I actually elect to miss work rather than upheave all over the newspapers I'm archiving. It's kind of pathetic because I'm only working 10 hours a week this summer anyway, which is why chronic nausea is so frustrating: sometimes, you just can't deal. Granted, if I was better about remembering to take my meds, I could probably function better. But I have to take so many it's hard to remember what I've missed for the day until it's too late. Sometimes I forget I haven't taken my Paxil until I start to cry at commercials featuring happy families in sedans. There's a phone service I use to call me at med time, but the trouble with that is I have to remember to schedule it every night before I go to bed so I don't screw up the next day. Either way, there's always something to remember. It'd be a lot easier on me if they invented once-monthly injections for all this crap like they have for osteoporosis meds and birth control. I don't need either one of those things. I need tummy stuff and antidepressants, but do they make those like that? No, of course not. It might actually make something in my life simple.

So until Big Daddy Pharma catches up with my wandering mind, here I sit.

Your Ever-Nauseous Blog Host,

Tif

Thursday, July 1, 2010

Oh Boy, A Blog!

Yes, I have jumped on the bandwagon. I now have a --*gasp*-- blog. I tried one a few years ago, but I had no readers. It was sad. (Read me if you want to live!)

Anyhow. I'm not exactly sure how I got this idea. I guess it stems from a combination of: A.) I must write in order to breathe, B.) It's summer and I'm bored, and C.) I never actually shut up anyway. So now you get to hear my voice without actually having to hear my voice! Cool, huh?

Specifics: this will be a blog about life with Cerebral Palsy/clinical depression/an autoimmune disorder that has yet to be made officially official because it can't decide whether it wants to test as lupus or rheumatoid arthritis. All I know is I wish it would make up its damn mind already. Oh, and there will also be stuff about being a survivor of abuse, too, so if that kind of thing bothers you, you might wanna skip those parts. I'll come up with a warning system. Let me think on it.

Short About Me section: Most people call me Tif these days. One "f", please. I like it that way. It has attitude. I don't object to Tiffany, though: I kinda like it sometimes. However, only a special group of people are allowed to call me Tiffy. If you are not one of those people (and they know who they are), do not refer to me as Tiffy unless you would like for your death to come swiftly on the wheels of a red power scooter.

I'm 25 and recently went back to school to be a social worker. I swear I'll be bald by the time I graduate.

The only "man" in my life is my cat, Jude. That's the way I like it. I prefer the other team, if you get my gist. And to quote a line from my favorite show, Law and Order: SVU, "Don't judge me, or I'll get to heaven before you." Not that I believe in your traditional heaven, but we'll get to that later.

I have an nontraditional sort of nuclear family consisting of "adopted" parents who are a little younger than your average parents of a 25 year-old, and 2 adopted sisters, Chelsey and Elizabeth (called Biz), who keep me sane. (Oh, and I'm the oldest. Neener, neener, neener.)

I don't currently have a scanner, so if you're looking for lots of pictures, tough titties. You'll just have to survive on my wit and general cattiness.

I think that about sums it up, for now. Stay tuned for more, and remember -- read me if you want to live.

Tiffany