Tuesday, November 13, 2012

Sorry, Santa: Tif's Not--So-Grown-Up (excluding that last item, there) Christmas List

Today I'm going to have a little fun. Today I'm going to do a childish, selfish thing and make a Christmas list of ultimately meaningless objects that I really, really want, just because I want to. Screw "My Grownup Christmas List" -- even as a rabid idealist, I know I'm wasting my Santa wishes on world peace. Never gonna happen. And I realized today that I never really remember making a Christmas list when I was a kid. I'm sure I did, but it was overshadowed by hell. And so, today, right here, right now, I am making a Christmas list of stuff I want for me, me, and myself.

1. The Sims 3 Supernatural and the Sims 3 Seasons.
2. A fresh supply of Sensual Amber body butter from Bath and Body Works.
3. Two more ear piercings.
4. A giant dollhouse that opens up, kind of like this one:
Looook at it ...
5. All those American Girl dolls I lusted after but never got when I was a kid.
Loooook at them ...
6. The complete boxed set(s) of Little House on the Prairie books and DVDs.

7. These dresses from the Pyramid Collection:
Oooooo ...
Aaaaahhh ...
8. This bedspread and shams, also from the Pyramid Collection:
Are you seeing this right now?!
9. A Tibetan singing bowl and clapper:
It makes pretty sounds.
and 

10. (I'll stop here or risk going on forever.) Mariska Hargitay at my door wearing a ponytail with a big Christmas bow in it (she's so cute with a ponytail) and aside from the ponytail and the bow, absolutely nothing else.

Ta-da! My list.

Holy jeebus, that was fun!

Sorry, Santa!






Thursday, November 8, 2012

A Poverty Story

I was born in December of 1984. In '85, my father drove an 18-wheeler all over the Midwest hauling coal and powdered gypsum for a trucking company called Buchta, and my mother worked at the local five n' dime. '86 was the same. In '87, we moved to Boyleston, IN and lived in a single-wide trailer next to the railroad tracks. Coal dust hung in the air. The smell from the hog farm across the way was unpleasant at best, and overpowering at worst. My father still drove for Buchta, leaving my mother home to care for me and my brother, who was born in July of '88. She had no job, no car, no friends: just two small children and my aunt and uncle, who lived within sight of our kitchen window.

I have Cerebral Palsy. Throughout my childhood I needed urgent and expensive medical care, usually in the form of surgery after surgery. By the time I was seven I'd had my eyes, the adductors and abductors in my hips, both calves, both hamstrings, and the quadriceps muscle in my right leg operated on. There were glasses and casts and braces, wheelchairs and walkers and rehab and therapy -- both physical and occupational -- to be afforded. I got my first pair of leg braces in 1988, when I was four years old, and like children that age will do, I grew out of them quickly and needed another pair -- and then another, and another, and another, and another ....

By 1990, my mother couldn't stand being in Boyleston anymore. With all her worldly possessions and both of her children packed into a rusted, boxy yellow car that resembled nothing so much as a banana, she moved back to my hometown of French Lick. She was 21 years old.

Off and on throughout my childhood, my mother pulled down what money she could working as a waitress at local restaurants. My father still drove for Buchta, though he cut back on overnights and eventually phased them out entirely by performing local runs -- the same route, day in and day out, day after day -- and picking up a second job as a mechanic at a place called Benny's Garage. He spent every weekday in his truck, and as many nights per week and weekends -- including Sundays -- as he could get, under a truck at Benny's.

By that time, my father had a definite problem with alcohol and my mother was suffering from depression. I was more than she had signed on for. When you have a baby at 16, you think of it, I think, more as a doll than a person: it'll be cute, and fun to dress up and parade around. But I was no doll, and definitely not an easy baby: I screamed and squalled from constant discomfort; I was undersized, wrongly formed, time-consuming and expensive. 

The more I think about it now, the easier it is for me to see how I came to have the past I have. My mother has always been exceptionally intelligent -- in fact, her IQ registers in the genius range. And she was active: in high school she played volleyball and ran track. She has albums full of awards for everything from History to French to Geometry. She told me once, when I was a teenager, that she'd always wanted to go to college at NYU in New York City just to see what such a big place was like. At 15, the world lay in front of my mother like candy for the taking. At 16, there was me. By the time she was 21, she had two kids and an alcoholic husband. She must have been absolutely miserable waiting tables and counting tips, changing diapers and watching the bills pile up and up and up. She was just a kid herself.

I don't think she's quite as miserable anymore; in fact, she may even be as happy as my mother can manage to be. She has a teaching degree and a career, girlfriends to hang out with and money to travel. And in a sad and all-too-familiar change of fortune, I have taken her place in the world of the poor.

I was 17 years old when I went to my mother with a pen and my FAFSA, needing her signature for that all-important financial aid. By then, the two of us were at mutual-enemy status. She resented me and would deny me what I wanted or needed simply for the pleasure of watching me suffer, and I, therefore, resented her and took my pleasure in finding ways to get what I wanted anyway, just to piss her off. So when she took one look at that FAFSA and told me outright that she didn't give a damn whether I went to school or not, that was it: I was going to school if I had to pull the planet out of orbit to do it. I was too smart not to, anyway: everybody said so, even if I didn't quite believe it.

I started at the University of Southern Indiana in the summer of 2003, barely 2 months after I graduated high school. I applied for and was granted what was called a "dependency override" or a "signature exemption," meaning I didn't need my parents' financial information or signatures to be eligible for federal aid. I was, money-wise and in every other notable respect, on my own.

I had some help: Occupational/Vocational Rehabilitation paid for my books and part of my tuition, and I got to keep my SSI. I was even attending psychotherapy on the Victims of Crime Assistance Grant, or VOCA. I presented myself to the financial aid office at the university and took out a loan to cover the rest -- and there is where my problems started.

I didn't know thing number one about loans or how to manage money. I couldn't tell you what a reasonable rate of interest was, or outline the merits of one provider over another. I went with Sallie Mae because the counselor told me it was the largest provider of student loans in the nation, which I mistakenly thought meant it was the best choice. When I started back to school in PA, I consolidated and switched over to American Education Services, but Sallie Mae took me for one hell of a ride for years. Also, like most kids, I overspent: I went from zero to financially independent literally overnight, and I just couldn't get over the idea that I could go to the store and buy stuff whenever I wanted. I could kick myself now. I could have saved so much money back then, but instead I spent it like there would always be more tomorrow.

I moved to PA in July of '05. In October of that year, I got my own apartment. It wasn't much to look at -- it was a rat hole, actually -- but I was proud of it: a huge living room, a kitchen and separate dining room, and 2 bedrooms for $325/month. Never mind that the porch was about to fall off or that the floor was so torn up it gave me wicked splinters through my socks -- it was my first apartment, and I thought it was a castle ... and then I had to pay to heat the castle.

OUCH.

At that point, everything started to go to Hell at once: I had to quit my job because my PTSD was so bad I ended up hospitalized multiple times; Social Security docked my check for several months because I hadn't been aware of the mandatory income reporting rule when I was working; the ancient furnace under my dilapidated porch burned through heating oil at a thousand gallons a minute ... before I knew what was happening, I was watching my own bills pile up and seeing my breath in my living room because I couldn't afford to keep the heat on. And then I had a bank balance of -$325.00, and the fuel bill ended up in collections, and plunk! In May of '06 I was in Housing.

And I'm still stuck here.

While I was busy getting my mental health back together, I came off my "palsy plateau" and my physical health began to fail. In 2008, I finally declared that I was going back to school and bit the bullet, even though I was often so ill I had to run out of classrooms to throw up and take exams while coping with off-the-charts pain levels. But I did it. I got a job working in the library for the better part of a year, too, and in May of this year, I walked across that stage and got my diploma ...

Which is now hanging uselessly on my wall. A $25,000 decoration in an apartment so small, I could spit from the front door and hit the back wall in the bedroom. 

I have stopped being excited when I send out a resume now. I just drop it in the mail and wait for the rejection letter: I've gotten so many, I could wallpaper my room with them. Last week, I signed up for a temp agency that will hire me out as a receptionist or secretary *if* they can find a place to put me, when what I really want to do is practice Social Work. I myself am experiencing some of the frustration my mother must have felt: I'm a bright, active mind stuck with the possibility of doing paperwork for a living because my bills have got to be paid. Disability complicates this: I can't just take any old job. I have to be able to physically do it, and it has to pay enough for my SSI to at least come out even after they rape my check to compensate for my wages. (I can't do blue-collar work full time because of the sheer physicality of it, so if I work for too little per hour, my check doesn't come out even and I'm actually working myself into more debt. And don't even get me started on the way the Housing Authority leaps on every extra cent I make like they'll die without it.) I'm also convinced that I lose job opportunities simply because of being disabled, though no one would dare let on that there's any truth to that. I find it less so in the white-collar environment, but subconscious thought on the part of employers seems to be that the employee in the wheelchair cannot perform as well as the employee without one. That's why there are EOE laws, though they don't seem to be helping me a whole hell of a lot right now.

And then there's the common boat of, well, the job market just sucks. I'm not the only one who can't find work, though I do fear that with that plus all the rest, I'll be out here floating in the poverty canoe for the rest of my life.

Sigh.

Can I beat up my mother and take her lunch money? If I were the right kind of person, I'd say she owes me some.

Friday, October 26, 2012

Conversations with Angel

Last week, my niece turned 3. 3! And today we talked on the phone all about her birthday and how she got a Thomas the Tank Engine play set, and how she goes to school now and she's such a big girl, and oh yeah, she loves Happy Feet because the penguins dance. I didn't understand most of it: Evangeline has a significant speech delay. Her little brain works faster than her mouth can move on the best of days, and when she gets excited ... well, let's just say all that usually comes through is, "Woohoo! Oh Gosh!" and a bunch of jabber I can't follow.

Oh, I try: when she chatters away, I listen ever so closely for one word, one phrase, to tune me in to whatever it is we're talking about. Then I can take the one word and extrapolate a topic. If I hear "train," for example, I know darn well we're talking about Thomas: she's obsessed with him. Then I can keep the conversation going. But I have to tell you, this doesn't always work. If I'm to be completely honest with myself, Angel probably thinks I'm stupid half the time, because she's clearly telling me something of overriding importance and all I can respond with is, "You did? That's so cool!"

Now, the speech is being worked on. She has a speech therapist, and a few weeks ago she started 2 full days per week at a special-needs preschool while her amazing Mama, whom I swear wears some kind of invisible superhero cape, kicks butt in nursing school. And the work is working. Today I got, "I went to school!" and "I watched Happy Feet!" And today, I got the best present ever: She called me Aunt Tif for the first time, and I actually understood her.

Now, this would melt any auntie's heart, I'm sure. But for me, it's extra special. For those of you who don't know the back story, I'll try to sum it up: most of my family these days is family I have chosen. We have no blood ties, no common ancestor. I've heard it said that family matters most because blood is thicker than water, but that's not entirely accurate. Family matters most because whether you spring from the same tree or find one another later as two trees from two different forests, love is thicker than everything. 

I have a biological brother. His name is Matthew, and he's 24. But the way our lives were, growing up ... we're not close anymore. We haven't spoken or seen one another in almost 8 years. Last Christmas, when he had the chance to come in and tell me hello, he stayed outside in his truck. There's a chasm of pain there for him, and it's too wide for him to cross. Oh, I love him: I love him so much I try not to think about it, because it rips my heart out. I dread his birthday every year, because I can't help but remember the adorable little boy he was, all dark eyes and dimples, and how I always felt so much older, so protective. There are memories ...

One night, when our father came home drunk and he and our mother were having a screaming match in the living room, we both crept out of our beds and stood unseen in the hallway, watching, worrying. I was behind him with my arm around him, and in the split second before Dale hurled a flashlight through the wall, I covered his eyes so he wouldn't have to see.

I read him bedtime stories; his favorite was Mudpie's Big Adventure, about a little dog who goes on a picnic. Then he had a love affair with Horton Hears A Who. He loved the Disney version of The Jungle Book and used to go tromping around singing, "Colonel Hathi's March." It's funny how I remember it, the way I remember it, as if I were a little mother instead of a 7 year-old girl who hid in the basement most of the time and was scared of the world. I was determined that he would come to no harm. He was my brother, dammit, and anything that wanted to get to him would have to go through me first.

For a long time, Matt and I took care of each other. Then we had to push apart each for our own survival, like two boats in a narrow pass. We have not come back together. I still hold out hope, but with the way things are likely to be for a good long while yet, when I get nieces and nephews from Matthew, they will be in name only. I will not get to hold them, rock them, sing them silly songs, talk to them about Thomas the Tank Engine. I will not hear, "Aunt Tif" from their mouths. So when I heard it today from Angel, I nearly cried.

Her Mama didn't have to let me be an aunt. If circumstances had been just the slightest bit different, Chelsey and I never would have met one another. I wouldn't get an exorbitant amount of pride from calling her my baby sister, from knowing that her children are forever my niece and nephew. I love Chelsey fiercely for this honor: I would do anything, anything at all, to protect her and those beautiful babies. I think everyone has at least one person they would stand up and die for; I have at least 3. At least. Because when it comes down to it, heartache and hardship aside, I am a blessed woman. I wouldn't hesitate one second to say, "Take me instead." For Chelsey, for Evangeline, for Gideon, for Elizabeth, for Lou, for Michelle, for my brother Matthew, even now -- for them, I would stand up and volunteer to die. That is how I love; that deeply, that ferociously. Maybe you think I'm just being dramatic, but I cannot love any other way.

Today, Angel called me Aunt Tif. And if I went through decades of blood and pain and terror and loneliness just for that, just to hear those words from that baby's mouth -- well, that's the best argument for Providence I have, because it was worth it.

Lina and I share a smooch for the camera last Christmas.

Monday, October 15, 2012

Captain OddCat: A Plan for Prosperity

I have hit upon the perfect get-rich-quick scheme. The idea was inspired partly by a blog I read called "Cat Versus Human" (www.catversushuman.blogspot.com), and partly by my own nutty feline. Jude has a lot of weird personality quirks. He won't touch a box, for example, and most cats go ape shit over boxes. His voice sounds like Fran Drescher and Bugsy Seigel did the mattress mambo and Frannie gave birth to a cat. There's a lot of fodder just right there. I could stop there and be good. I have thought, however, to exploit my cat's singularly odd psyche for profit. It'll keep him stocked up on that insanely expensive prescription kibble. It's for his own good.

Here's the idea: I make Jude into an internet celebricat. (Think Hipster Kitty, or First World Problems Cat.) I get him an internet alias. (I have decided on Captain OddCat, because it sounds appropriately meme-y.) Touting him as Captain OddCat, I make him into an overnight meme sensation. I start a blog, the Captain OddCat blog, and make a comic strip for him. (There is evidence that this works as a money-making device. Cat Versus Human has a comic strip, and then there's the Simon's Cat videos all the cat lovers -- including me -- enjoy so much. Both of these ventures have enabled their fearless entrepreneurs to market products and rake in the dough.) When the comic strip explodes into stardom, I start printing Captain OddCat mugs and t-shirts and buttons and tote bags and suchlike and selling them directly from the blog page.

Of course my Jude will be a worldwide sensation, so the dollars will start coming in immediately. Boom. Rich. Me, myself, and Captain OddCat move out of this apartment and into a giant mansion. I carry him on my arm in public, with his own sunglasses, so his celebrity won't interfere with his ability to lead a normal life. He can have prescription wet food and a roomful of paper coils to chase, while I'm busy getting laid because of course all the hot cat-loving chicks will be all over the mastermind behind Captain OddCat, and we'll both live happily ever after.

Now I just have to learn how to draw.

Monday, October 8, 2012

Paper Flowers: When "Big Kids" Play


"Say say oh playmate
Come out and play with me
And bring your dollies three
Climb up my apple tree ..."

"Go play." Parents say it to their kids all the time. I've said it to my niece:
Baby, go over there and play for a minute while Auntie folds the clothes." 

Just recently I've started wondering if any adult really knows what it means to play, or if we all lose the gist of it as we get older. I have, on my camera, a video clip of Lina helping my sister fold the clothes -- bunching them up and then handing them over for Mommy to "Oooo," over while she covertly actually folds them. But Lina is so proud of herself while she's "folding". She can hardly stand still. She bounces from foot to foot and comes to show me a shirt she did. "Oh, good job!" I tell her. "That's so awesome, helping Mommy fold the clothes! You're such a good helper."
And every time I watch this video, it strikes me just a little more that for my niece -- who will turn three on the 21st of this month -- folding clothes *is* playing. Play is all about learning by doing. I tend to think that as adults, many of us think that we don't need to play anymore -- "learning by doing" is accomplished your second hour on a new job, when your supervisor leaves you to drown in a stack of policy manuals and a line of patrons screaming for your attention. But play takes learning by doing to a whole new level: play makes it fun. 

I'm reminded of how I made it through chores as a child. I'd pretend that I was a kid in a Mrs. Piggle-Wiggle story, trapped in my room by a giant mess that I had to clean so that I wouldn't have to drink from the garden hose put through the window and eat peanut butter sandwiches off the tines of a rake. (That's an actual story, by the way.) Or I'd pretend someone really, really important was coming to visit, like the President or the Queen of England, and everything had to be impressively spotless. This made chores suck less. I wasn't out in the yard with a Super Soaker or in the playhouse with a doll, but I was playing just the same -- and in recent weeks, I've noticed that I'm still playing. 

Now whether this is a product of retarded social development due to a traumatic childhood or just something I've picked up on that most people aren't aware of, I think it's a good thing. And I think, too, that its origins might not be "or" but "and." I play to pick up on social development, and I've probably been doing it all along without noticing. What brought it to my attention was my new-found obsession with crafting.

I'll admit it: at this point, I still suck at crafting. I don't have a lot of patience or practical know how, and my fine motor skills are blotto thanks to CP. Tying intricate knots or folding papers *just so* is difficult and time consuming -- and yet I find I'm still enjoying it. 

I love to color and draw, too. I didn't realize how much until I sat down and let myself do it, until I stopped criticizing it and just scribbled. CP has left me with a sizable deficit in my ability to recognize proportion and spacial perception, so I can't make a symmetrical anything, and 3-D artwork is still largely beyond my grasp. I was teased for this mercilessly when I was in school. Art class was my worst enemy. The yearly ritual of having classes hand-draw a design with the teacher's name on it to put over the door was pure torture when it came to the voting-for-the-best-one part: every year I was the worst artist, hands down, and even though the "entries" had no student names on them, my classmates knew which entry was mine and would boo and snigger at it. So I stopped thinking I could make pretty things. I was ashamed of everything I drew or colored, feeling that it stuck out like a hideous growth from all the other pretty things everyone else had made. I stuffed my inner artist into a little closet in the back of my head and resolved never to let that bitch back out.

But oh, I love to create!

I mostly do this through writing. Writing is my lifeline, my happiness; writing is cathartic and fun and I would be lost without it. I make my pictures out of words. And now, sometimes, I make my pictures out of crayons and pencils and markers and paper too. I'm letting the artist in me out to play!

Most of my stuff is crude. Flat. Clearly drawn laboriously and erased again and again. A Kindergartner could out-draw me, with my (lack of) spacial perception: I can see the picture so clearly in my head, and then I look at a piece of paper and the dimensions unravel until all that's left of my mental picture is a bunch of loose threads all tangled together. But I'm enamored with color! Texture! Design! ColorColorColorColor!! Color makes me happy!


I've started drawing these huge, garish abstract flowers
for no other reason than that it's fun. I like it. I have no idea what I'm going to do with them, but I like to make them. I'm playing, and I like it, and I'm learning -- slowly, I find that my drawing is getting better, that I'm becoming less hindered by what I always thought of as the "right way" to draw or create art. I'm reminded of the easel and paints in the playroom at the hospital when I was 7 years old and recovering from major surgery, and the simple joy I found in taking a brush and spreading broad sweeps of aimless, happy color over the page. I had nothing in mind then about what was "good" art: I had color and paper and I was happy. It's been an exercise in true learning, getting back to that point ...

One gigantic explosion of a paper flower at a time!

Friday, October 5, 2012

Occupied Dwelling Inspection: Stress Overload

It is ODI (Occupied Dwelling Inspection) time ... again. The good part about ODI is that it forces me to clean everything. The bad part about ODI is that it forces me to clean everything. I have a love/hate relationship with domestic chores: I love to hate them. In addition to having my paternal grandmother's hoarding gene (just a touch of it, honest,) I hate chores because chores were used as punishment when I was a child, and just like everything else my mother used as punishment, they were a little ... over the top. If Michelle told me to clean my room and it didn't pass muster, she'd trash it -- all the way down to actually *turning over the bookshelves* -- and make me do it again. Consequently, I tend to avoid cleaning because as soon as I start, I get very, very stressed -- there's just no way I'll be able to do it perfectly enough. And when it comes to ODI and I have 3 men in my apartment checking for dirty dishes and soap scum, well ... you can see the problem, right?

STRESS OVERLOAD.

The biggest problem with ODI is this: we get a notice that has on it a 2-week window -- Inspections will be conducted between such-and-such time on this date and such-and-such time on some other date 2 weeks away -- but absolutely zero hint as to where, within that window, specific apartments will fall. The Stormtroopers could come bustin' in this Tuesday, or Tuesday twice removed.

STRESS OVERLOAD.

Out of necessity, I clean everything as soon as I get the notice: Do I have 4 days, or 14? No telling. Get on it. I scrub out the fridge, scour the stove top and burners, clean the oven, bleach the counters, scour the bathtub, wash all the linens, organize *everything*, polish the furniture, sweep, mop, vacuum, make sure the closets are decent ... it goes on and on. And then I suffer

STRESS OVERLOAD

because I feel I must keep everything perfect until they arrive. I go ballistic if I spill something. I have a freakout attack if I see a crumb. Heaven forbid Jude kick kitty litter out of the box.

One redeeming factor is that the ODI Stormtroopers aren't allowed to look in my personal appliances or furniture. If I hear them coming down the hall and I haven't done the breakfast dishes, I can hide them in the microwave. If my room is just too cluttered but I have no place to put things that looks tidy enough -- a common problem in a place this size -- they go bye-bye under the bed for awhile. Simple enough. But I often feel like some sort of fugitive of war, stashing away my belongings till it's safe to bring them out again. And with every day that goes by without ODI being done and over with for the year, I get progressively more neurotic.

I failed an inspection once, some years ago. I had just broken up with my girlfriend and was working at the supermarket, where I put up with physical pain and overt discrimination over fear of losing my job. My depression and anxiety were horrible: I could barely wash my own hair, let alone the dishes. And the consequences weren't dire; I wasn't evicted or anything. But I did have to suffer the utter embarrassment of a CCHA employee showing up at my door with a folder of cleaning tips and a dumbass housekeeping video to watch, as if I had no idea how to operate a can of Pledge, followed by a second inspection. I was so humiliated I actually cried, which humiliated me more, which resulted in me being severely pissed off for several straight days. I have no desire to repeat that experience. Therefore, I suffer

STRESS OVERLOAD

and clean like a maniac, and grumble the whole time about how much I loathe living here, and entertain fantasies of walking into the home of a member of the Housing Authority board and declaring it a sty, and forcing him to watch a video about how to use Pledge.

... really? A housekeeping video about *dusting* was my punishment?

Tuesday, September 25, 2012

Humble Pie

According to general society, the top 3 things disability can teach a person are:

1. Perseverance
2. Patience
3. Humility

(And how to mix your medications for the optimum desired effect without killing yourself, but I was going for things that sounded a little less shady.)

Perseverance, I have down -- at least according to my new therapist. Personally I think there's a little less persevering going on than there is grumbling and doing things anyway because I can't always convince other people to do them, but whatever. Maybe that's an alternate definition.

Patience, I will never learn. Apparently I was already headed off to the next class when I should have been taking notes on the whole patience bit. They are suspiciously absent from my personal annals re: how to live respectably as a cripple. Warp speed is not fast enough for me. I have to go faster. I also expect everyone else to go faster, which has led to my own version of road rage: astride my little red scooter, I have been known to sit at crosswalks and shout things like, "Are you going to hit the gas, or do you plan on sitting there for the next year?!"

Humility, I am actually learning. Not because I want to, mind you -- truth be told, I'd rather elbow everyone else out of the way, do it myself, and be the greatest ever at it, because I really, really like knowing things and then showing them off. I can be an incredible smartass like that. Even my best friend has told me to shut up and stop correcting her before she pops me one upside the head. Intelligence -- particularly my own -- can make me just a *little* too happy sometimes. So now you know, if you didn't already: I am impatient and prideful. Maybe that's why I'm stuck in this crooked, slow, clumsy body -- because without something to take me down a notch or two, I'd go around thinking I was the greatest thing since the Big Bang. (Come to think of it, maybe this crooked, slow, clumsy body is supposed to teach me patience, too ... dammit.)

Many of you know my ambivalent relationship with Christian Scripture, but I gotta tell you: sometimes, things are right on. When you have Cerebral Palsy, pride literally does come before a literal fall quite often.

"Wait! The ground is better over here; try coming this way."
"I got this! I'm just fi --"
Crash.

The problem with disability and humility is twofold, at the very least. First, there are all those times when it appears to the able-bodied world as if you need assistance, but you don't and you know it. In such cases, attempts to explain otherwise are seen as signs of stubbornness or pride when really, it's just a matter of, "I've been doing this for over 2 decades and I really, seriously, honestly, do not need your help." And it's almost impossible to convey the other side of that coin, which is when you don't want the help not because you're prideful, but because the able-bodied person is just helping the wrong way.

Let me try to explain what I mean. Sometimes, the able-bodied are so eager to assist the disabled that they just. don't. listen. For example, when I fall and someone tries to help me up, the absolute worst way to do it is to hitch your hands around my waist or under my arms and pull me up from behind: my legs are not strong enough to push me upright from this position. I end up dangling there with my knees helplessly bent going, "Wait! Stop! Drop me right now!" It hurts, and dammit, it's embarrassing. The best way to help any disabled person with anything is to listen to them first. We will tell you what we need -- but the teaching moment so often gets lost in the surge of well-meaning, and everything turns into an ego disaster for everyone involved.

Then there are the times when you, the disabled person, genuinely don't know whether you need help or not. There follows a lot of starts and stops and inner dialogue as you wrestle with the whole Safety vs. Independence issue, i.e.: "I could probably handle this. But what if I drop it and cut myself?" and so on. And if you choose to try it on the basis of not limiting yourself any more than you absolutely must, and -- Heaven forbid -- you fail, to you, it's a lesson learned: "Note to self: Next time you are in this situation, ask for help." But to other people looking on, it can be yet another time when you let your pride go before your fall. It doesn't help that disability is fickle. I know that what I can and cannot do can vary from day to day and is dependent upon a lot of factors, like what time I took my last dose of Baclofen or if the humidity is so high my quads are turning to string cheese, or if I have an ear infection and consequently my balance is more iffy than usual, etc. Sometimes I get odd looks when I ask for help with something I did with no problem the day before, or even earlier in the same day. I suspect there are those who just think I've come down with a good ole-fashioned case of Lazy, and because I don't always know how to explain the situation with brevity, I allow them to think it and rely on social constraint to see to it that I get the assistance I need -- after all, what kind of jackass refuses to help a cripple? It may be crude, but it's the truth, and I imagine it sucks for you able-bodied people -- what if you  just want to be lazy? It's not allowed. You have to help, or risk being labeled a jackass. Of course, there are those who don't care about that sort of thing. More power to you, I say. It might be kind of refreshing to be told to feck off once in awhile, just like everyone else in the world, instead of being pandered to.

And then there is the third issue: You, the cripple, really need help, and the situation is so ridiculously humiliating you really are letting pride go before your fall. In the past few years, for example, I have lost much of my ability to bend at the waist. I can do it for a few seconds at a time, usually just long enough to snatch something off the floor. I have adapted to this with reaching devices and -- when no one can see -- actually getting down onto the floor and crawling around to do stuff. If I need to straighten the living room and I'm already hurtin' and there's a lot of little things like beads or change or cat toys laying around, I just drop to all fours and the problem is solved. But last week I ran into a situation wherein bending was not possible and crawling would not have helped even if I wasn't in public at the time, which I was.

My shoe came untied. Big deal, right? Bend down and tie it. Except I can't anymore. I can only describe the effort as a series of swears brought on by severe pain and the eventual crumpling of Tif to the floor, trying to decide which of her body parts to rip off and throw across the room in frustration. And I refuse to wear those elastic laces. Those things look SO STUPID. I'm 28. I still have standards. My solution is to take the time and effort in the mornings to make sure my shoes are tied so well that undoing them practically requires a knife because you'd rather cut through the damned things than spend an hour undoing the knots. This works admirably well -- except for when it doesn't.

I went for a walk at the river. I pried off my shoes and crawled around on the rocks and then I put my shoes back on, all the while balanced precariously on the single stone I could find that was wide enough to accommodate what I affectionately call my, "ghetto booty." Then I went off to Fox's for dinner, and on the way out, exhausted, arms akimbo in crutches and everything set to make it back to Bolt outside the front door, I realized my shoelace was undone.

Inner dialogue went something like this:

"Ignore it."
"You'll break your neck."
"So sit down and tie it."
"But that would mean putting my crutches back down, and I just picked them up, and I'm so tired."
"So ask the cashier to tie it."
"But ..."
"Well?"
"I really miss the days I could tie my own [expletive deleted] shoes."
"I know. But what other choice is there?"
"Fine."

In the end, I asked for help. And I got it, and so I went back out to Bolt without having to put down, pick up, and rearrange my equipment and all the stuff on my person, and without being prideful and maybe breaking my neck. It was a big, smelly slice of humble pie, and I shut up and ate it. I hated it. Humility and I are not pals. But if there's one thing disability will do, it's humble a person. I never thought I'd ever, ever have to ask someone else to tie my shoe after I learned to tie at age five. And there I was a few months shy of 28, smiling and thanking the cashier as he tied it for me, when what I really wanted to do was curse everyone in the room for being straight where I am crooked and whole where I am broken -- as if they could help their bodies any more than I can help mine. Usually, I am nowhere near that bitter. Usually, I make it into a joke and move right on. This time it took me a few days, but I did it. I leave you with the thought that finally made me happy:

How many of you guys can basically say, "You, you right there, come over here and tie my shoe for me." and have someone actually do it?? I should not be embarrassed. I should feel like royalty. I am Tif, Queen of Not Having to Tie My Own Stupid Shoes.

Wednesday, September 19, 2012

An Argument for Why Cats are Indeed Like Kids

I always hear people -- usually mothers -- say almost derisively that cats are not like kids. And I agree with them, to a point. Last Christmas I spent a week with my 2 year-old niece and newborn nephew, and I can honestly say my cat has never made me that tired in all the 5 years we have had together. Having a toddler use you as a jungle gym is a lot different than having a cat do the same. But for the sake of argument, and --dare I say it-- truth, I'd like to point out that in many ways, cats are very much like kids, particularly to that childless faction of the population which very much wishes for human offspring, but for whatever reason has yet to be blessed with babies who aren't four-legged and covered in fur.

For those people, the fur-baby set, cats or dogs or even ferrets or rats or chinchillas can and do become children. And it's usually people who cannot understand this bond who ridicule it. After all, how could raising a cat compare to raising a human child? I don't have to sit over here and worry that if I screw something up somewhere along the line, Jude's going to become a serial killer or a narcissistic psychopath -- although even if he does become one, all he can kill is the bugs who get into the living room around the edges of the air conditioner. I don't have to worry that he'll go out and get a girl pregnant, or crash his car on Prom night and become a quadriplegic. But that doesn't mean I don't worry about him -- his mental health and his physical health -- as much as any other mother worries about her 2-legged child.

Using Jude as an example, here are some ways cats are like kids:

1. They get sick. Sometimes they get really sick. And just like parents of human kids will rush their ailing babes off to the E.R. in the middle of the night, so will the parents of furry kids. Just like the parents of human kids, the parents of furry kids would rather saw off their own limbs as payment for medical treatment than see their children suffer. And we will do unpleasant, sometimes completely disgusting things to ensure their continued health. A few years ago, Jude suffered a series of urinary tract infections. I dosed him with antibiotics even though he thrashed and bit and squalled. When I had to collect a urine sample and he refused to pee in a box full of packing peanuts -- which is the veterinarian-recommended, easiest way to collect a urine sample from a cat -- I was reduced to crawling around on the bathroom floor with an eyedropper sucking up puddles of pee. When he had to stay overnight at the vet's for a procedure, I was so worried about him I couldn't sleep. And when I was told he had a chronic problem with crystallized urine and would need a very expensive prescription diet for the rest of his life, I shelled out for it and will continue to do so, even if I have to eat Ramen and peanut butter sandwiches for 2 straight weeks to cover it. To some people -- even people with pets -- these measures are extreme and ridiculous. But pet parents are different from pet owners. The bond is different. It's love, and it will stop at nothing short of everything it can do.

2. Cats make messes. Huge messes. While it is true that they can generally be left home alone for extended periods of time, that doesn't mean you should expect your home to be in one piece when you get back. Once I came home and found Jude surrounded by 5 pounds of kibble he had ripped open and spread from corner to corner. Then there were the decimated houseplants, the unrolled and shredded toilet paper, and the time he crawled into the garbage can after some Chinese leftovers and came out with his fur matted together with sweet and sour sauce, little bits of disgusting clinging to him, and trash scattered through the living room. There followed more than an hour's fiasco of bathing the cat and restraining him to blow his fur dry so it wouldn't tangle into mats and result in a very unflattering haircut.

3. Cats get bored with their toys and bug you instead. Just like human kids, cats need to play, and just like human kids, they would rather pester their people-parents than do so quietly by themselves. This apartment is scattered with cat toys: mice with catnip and mice with bells, fuzzy things that rattle and little balls that jingle, things that dangle temptingly for doorknobs and blow in the breeze from the air conditioner. And still Jude will sit before me and whine, and still he will persist in displaying his boredom by  doing things he knows he is not supposed to do. One little white paw will reach up from underneath the coffee table and send things crashing to the floor, one by one. Or he will jump up onto the dresser and saunter to and fro among my Granny Brown's antique dolls, even though he knows better. Or he will find a snag in the carpet and rip it and pull it until it becomes a run that spans several feet. This especially occurs when I'm trying to work. He'll pester the bejeezuz out of me by reaching through the slats in the back of my chair and swatting me on the ass, or he'll bite my toes or walk across the keyboard while I'm typing, all the while mrowling his version of, "Mom, Mom, Mom, I'm bored, Mom, look at me, Mom, there's nothing to do, Mom, Mom, Mom." And I can't just send him to his room till he behaves. He doesn't have one. This whole place is his room.

4. Cats need love and affection, just like kids do. Cats are capable of being afraid of things, just like any other creature that lives. Jude hates the wind. When it whistles and howls in the wintertime, he will seek me out and hide his head under my arm and shake like a leaf. And just like a parent would do for a small child, I rub his back and whisper to him in a reassuring voice until he calms down. Cats get lonely: sometimes Jude will jump up into my lap just for a hug and then saunter away again, reassured of our bond. It's not possible to keep a cat truly happy just by setting out a dish of cream -- in fact, cat's aren't supposed to have cream OR milk, because they're lactose intolerant. Just like with human kids, just because the cat kid likes it doesn't mean you should give it to him.

These are just a handful of reasons cats are like kids; I can think of a lot more. And this is by no means a slight to people who raise actual human children -- just, I don't know, a little lesson in what kids really are. Let's be honest; those of you with human kids don't just love them because they're bipedal and they look like you or call you Mommy. There's more to it than that, and it's the same way with cat kids or dog kids or ferret kids or chinchilla kids. To love someone, really love them, whether human or animal, is an investment of time and energy and emotion, and it isn't all that different from one species to another.

Friday, September 14, 2012

Little White Pills

It's no secret that I struggle with chronic depression -- anyone who knows me well knows this about me. My traumatic past and my damaged brain have conspired to make me a chemically deficient basket case. I have a lovely psychotropic regimen to right the wrongs, a little rainbow of capsules: 2 pink ones, a blue one, a white one, and a green-and-brown one, every day. These are respectively: mood stabilizer(s), long-term anti-anxiety, emergency short-term anti-anxiety, and nightmare control. Oh, and then there's the legal Speed to counteract the effects of the long-term anti-anxiety med, also known as Klonopin, which is quite effective at sending me to a state of consciousness about half a notch above comatose. It's a mess.

Two of these medicines are PRN, which means I only have to take them when I need them, as determined by me. I don't always have to take the nightmare med. I don't always have to take the Klonopin. This makes me feel slightly less of a basket case -- I'm just left with Paxil, Ativan, and Dexadrine. A 3-a-day set is damn good for someone with an Axis I diagnosis of chronic, recurrent Major Depressive Disorder. Most of my MDD peer group is drugged up past their eyeballs. It is my personal policy, however, not to take anything I don't absolutely have to take. At this point in my life, I am aware that I MUST take a mood stabilizer/antidepressant. Me without that ain't pretty. Me without that for too awful long probably ain't even alive. I only broke down and asked for something for nightmares after 3 months of vivid, hallucinatory dreams about things like the ground turning into snakes and rabid hounds chasing me through the woods like a damn deer or something. I was haggard. I was exhausted. I was terrified to close my eyes. Something had to be done.

And this leaves us with the anxiety meds. Along with my depression comes a huge amount of anxiety. It's like a 2-for-1 psychological package deal: you get your depression, and we throw the panic in for free. This is where the little blue pill comes in. If I take the little blue pill like I should, I'm a lot more chill. There is no "Tif is frozen in place because the world will crack open if she moves" anxiety. Occasionally the rogue anxiety attack of moderate severity will break through, which is where the little white pill comes in. White pill + blue pill = my nervous system is stoned, and I wouldn't care if flaming meteors started crashing through the roof and landing in my living room.

Prior to just recently, I took a little white pill AND a little blue pill together maybe once every six months. I seriously rarely ever needed the Ativan. I actually considered telling my shrink to stop prescribing it -- but oh man, I am so glad I didn't. All this stuff going on with my mother has thrown me into a state of almost constant panic. I wake up in the morning already shaking. I try to hold off on the Ativan as long as I can, I really do, because the last thing I need is to become a pill-head, but for the past 2 weeks I have needed that little white pill once, sometimes twice a day, every day. Yes. I have gone from one every six months to up to 2 per day. My anxiety is out of control. And as anyone who struggles with persistent anxiety will tell you, when you're in it, you feel like you'll be there forever. I am calmly discussing this now because white pill + blue pill are working their magic in my bloodstream, but the second the dose wears off I'll be back to waiting for the ceiling to cave in.

See, people in the midst of full-blown anxiety attacks are capable of believing impossible things, things like, "If I move, my body will literally fly apart into a million pieces," or "If I move, there will be a massive earthquake and the entire world will crumble and suck everyone down to Hell." I know this because I've experienced it firsthand. About 3 years ago, I once had an anxiety attack so severe that I spent 14 straight hours stretched out flat on the floor, digging my nails into the carpet, because I just KNEW something unspeakably horrible would happen if I dared rise. In my right mind, this is laughable. Like now. Now I'm smirking and shaking my head. But my friends, a person in panic is NOT a person in her right mind. No way. Panic is so much survival instinct gone awry, and it can literally shut you down. Stop the presses. Drop you where you stand. Honest to God. It really can. When you have a panic attack, your brain convinces you you're dying. Unless you've been there, there's really no adequate way to explain it. You will do anything, literally anything, to just make it stop -- including lying prostrate on the floor for 14 hours. Or taking a whole lot more of the little white pills on top of the little blue pills and calmly waiting for flaming meteors to appear in your living room. That's where I'm at right now. I hate being there; I really, truly hate it. But if I don't do this, somebody's gonna have to come peel me off the floor and pack me off the the psych ward, which is not a locale I care to revisit.

Hopefully, this ends soon.

Thursday, September 13, 2012

Just Another Neurotic Disaster

Yesterday, I called my mother. I had to do it. My fear of calling her wasn't driving me half as mad as all this mother-related anxiety. It's the dreams. I had a dream about her funeral, and when they lowered her coffin into the ground I started screaming. Then I had a dream about something I can't even really remember, but she was in it, and I woke up in a cold sweat seriously considering buying a plane ticket and heading off to Indiana on the first flight out of Williamsport. Sometimes I get these feelings, these really strong urges to do a certain thing RIGHT AWAY or the whole world is going to fall apart and take me with it. Because of the anxiety, you know. In fight-or-flight, I'm a fighter *and* a flyer. If something's wrong and I need to run, I will mow down anyone and anything in my way. But this anxiety doesn't have an outlet. There's nothing I can do about the fact that my mother has cancer. There's nothing I can do about the fact that it has metastasized to her intestines. THERE IS NOTHING I CAN DO. That does not sit well with me. I'm a fixer; I have to make it better. I have to take all the wrong things and make them right again. And if I can't do that, I get scared. The panic just builds and builds until I'm so scared I can't move, because there's nowhere to run. I can't run from the way I feel right now; I can't un-feel it or undo cancer. So I become frozen in place and just stay there, shaking. I need an outlet. If I don't siphon some of this off, I'll drown in it. So I called my mother.

She was pleasant. The conversation was actually kind of nice. But see, my mother ... how do I explain this? She can't hit me anymore. I'm too big, and too far away, and I'd nail her to a wall if she did, cancer or no. She wouldn't have to worry about cancer, because I'd disembowel her and pull it out. But since she can't hit me anymore, she plays mind games. And she plays them well. So even though I actually enjoyed our conversation, I don't trust it. I don't trust HER. But part of me, a big part of me, wants to. I want to believe the games are over. I want to believe that maybe she's had a change of heart, that maybe she'll be nicer now that mortality is literally staring her in the face. And I love her. My God, do I love her. I hate her, but I love her. And I didn't realize how much until now.

She did horrible, terrible, nasty things to me that I can hardly bring myself to speak about. Torture, and pain, and blood ... there are some things that may very well stay locked inside forever, because I can't say them. My mouth won't do it. I bear scars and injuries that will be with me for the rest of my life because of my mother. She nearly killed me. And I still love her. When I get upset, when I get scared, I still want to run to my mommy and climb up into her lap and hear the lion in her tummy growl. I want to hurl myself into her arms and keen out all my pain on her shoulder, even though most of it is her fault to start with. And right now I want my mommy more than ever. But my mommy is sick. She's dying. I can't have her, because for one I never really did, and then if there's one of us who needs to be strong for the other right now, it's me and not her.

I have Momma and Dad. I do. And I love my Dad to death. He tries to help so much. He's so earnest about it. But sometimes a girl just needs a mom, and what I really want is to run crying to Momma and have her pat me on the back and tell me everything's gonna be okay. But I'm not sure how she'd handle that. We're affectionate, we care for each other a great deal, but she's not nearly as touchy-feely as I am. I think I'd just freak her out. What I need right now, what I really need, is for some wonderful woman to just sit and hold me while I cry. It makes me feel so stupid to say that, but I really think it would help. I'll take volunteers. You don't even have to say a word; just let me cry myself out and then we can pretend it never happened.

Good grief, I'm pathetic.


Wednesday, September 5, 2012

Tif, You Make Me Nervous.

I told Lindsey I'd start keeping track of my moods throughout the day, so we can tell if there's any kind of pattern to them: what's grief, what might be breakthrough depression, etc. I'm supposed to take it in next week. I have a feeling it'll look something like this:

Tuesday: Decided not to give a crap about anything and checked out of conscious thought: slept most of the day.

Wednesday: Tried to check out of conscious thought, but started worrying about winter with nothing to do and had a panic attack instead.

This moody deal is oh-so-lovely.

Thing is, I'm alright when I'm busy. I have my finger in a lot of pies right now for that very reason: there's the part-time bookkeeping, volunteering for the United Way, and trying to sponsor 25 posters for $5 apiece for Childhelp/Wings of Hope before the end of the month, which I have discovered is more difficult than it sounds. And I'd take on a couple more pies if I could find them, but then I'd run the risk of overwhelming myself and being moody for entirely different reasons. I do not handle stress well. I'm not handling much well at this particular moment.

This weekend was great: I went with Mama and Dad to Papa Bernard's farm in Slatington. I finally got over my nerves and actually started calling him "Papa," and the world didn't end. There wasn't even a minor earthquake. He just accepted it; no explanation needed. (Due to what happened right before I left Indiana, I have arguments with myself before I dub someone honorary family. I'm secretly very afraid of getting turned aside, hence the reason it took me nearly 7 years to seize the opportunity for a grandparent who lives in the same state.)

I learned how to use an apple picker this weekend, and discovered that picking tomatoes out of the garden -- particularly the smaller varieties, like cherry and grape -- is actually rather fun in a treasure-hunting sort of way. I had no less than 3 excellent, home-cooked meals, and opened a gateway to good childhood memories with all those dogs and rabbits and chickens. Papa B. even let me ride in the back of the pickup when we went to check the sunflowers and squash, though getting me in it took some doing on account of I'm not half as spry as I was when I was 10.

When we got home, I took myself down to the last day of the Regatta and spent way too much money, as usual: I got an oil burner I can't break this time, as it's made of tin, and 2 stretch bracelets from my usual booth: 3 summers back, I was at the Regatta looking for bracelets I could wear, but I can't clasp jewelry because of my hands and therefore can only wear things that stretch. I mentioned this to a lady who had a booth of beautiful jewelry, and on the spot she took apart my favorite piece, beaded it onto a stretch cord, and gave it to me for half price. She has since discovered a market for this type of jewelry and makes it routinely, and keeps back some of the prettiest ones for me to pick from every year. We keep an eye out for each other, now. I had my pulled-pork BBQ nachos and my funnel cake, and went home happy.

And then yesterday, I woke up with no plans. And it was raining. And I lost the button off one of my only good pairs of jeans. And I was facing another fruit-fly invasion. And I decelerated like it was the day after Christmas and went right back into my post-farm funk because I wasn't busy.

I tell you, sometimes I just don't know what to make of myself.

Thursday, August 30, 2012

Operation: Validate

So I'm not supposed to know this, but my mother is sick. I also probably shouldn't be mentioning it to anyone, because, well, I'm not supposed to know. My mother herself hasn't told me, though I'm sure my father and my brother know. I have a confidential informant; that's how we do things in my bio family. All the stuff that needs to get to me comes via the secret spy network that runs counter to the secret spy network my mother has running for herself. It's underground resistance meets underground counter-resistance. There may even be double agents. It's complicated.

Anyhow. The spy network says my mother has brain cancer. That was what, 3 weeks ago? Yeah. I've been sitting on that little bomb for three weeks. And the worst part is, I don't know anything else about the situation at all: where's the tumor? Is it operable? Is she opting for treatment? Is she dying? I'm about ready to call her up and ask her myself, but then she'd demand to know where I got my intel, and I swore I wouldn't give that up. She sent me an email, but there's nothing in there about being sick at all, so I've been sitting on that too -- I have no idea what to do with it. How do I dash out a reply and pretend nothing is wrong when I know she's sick? Is she ever going to tell me?

This whole thing has my brain all twisty. I spent so long trying to convince myself I didn't care that I had no idea what to even begin to think about this. As a matter of fact, I asked for the emotional distance that's probably keeping me out of the loop. I wanted it. So part of my brain 's confubble is trying to figure out how much of a right I have to be offended that I'm getting my information 3rd-party instead of from the source itself. I know I told her not to call, but "Hey, I have cancer." is a pretty good excuse to make an exception, right?

And then there's trying to sort out how I feel about her, period. Do I hate her? Yes. Do I love her? Yes. Do I want her to die? No. What I want her to do is stay alive and be well and become a whole new, really nice person who really wants to be my mom. That's what I've secretly wanted for years. I know it's a pipe dream: never, ever going to happen. And yet part of my mind insists that I hold onto that hope. And now I'm faced with the fact that if my mother dies of cancer, that hope will die with her. So on a human level, I'm mourning the possible loss of my mother and the definite loss of that hope, because this check-in with my mother's mortality has made me realize how ... how hopeless this hope is.

I asked my new therapist if you could grieve the death of hope, and she said absolutely you can. Then I asked her how I could hate someone enough to want them dead, and at the same time love them so much to feel broken that they might actually die. And you know what she said? She said that given my experiences, that's completely normal. Normal! I thought I was this mean little alien stranded out in the middle of an absolutely ridiculous grief, and I'm normal. (My Dad tried to tell me that too, but I often have to hear things from more than one source before I'm willing to buy into them. Natural reticence.)

I'm supposed to be working on "validating my emotions." You know, telling myself I have a right to feel however it is I feel, instead of beating myself up for being kind of a mess right now. I suppose this means I'm to stop analyzing my feelings and simply feel them. So okay.

Today, right now, I feel fine. I'm together today. Tomorrow I may not be; I tend to get anxious and jumpy a lot lately. I think part of that is just no news! Not knowing what's going on makes anybody nervous. And all the work my brain has been doing has made it hard for me as far as PTSD triggers lately. Trying to go to church on Sunday was a mistake; I was cruising too close to childhood and wound up right back at South Liberty. I nearly put my teeth through my bottom lip trying not to cry at one point, because I was afraid I wouldn't be able to stop if I got started and I didn't want everyone staring at me. I came home and cried instead. And in the past 3 days, I've eaten my emotions in the form of more donuts than I care to reveal. And this is okay. It's okay to feel sad. It's okay to feel confused. It's okay get mad and depressed ... I think It's even okay to write this entry and post it, because I needed to. I needed to put these things out and have them heard as part of the validation process. Most of my readers don't know my mother anyway, and those of you who do -- well, I can't control your behavior. You will do with this information what you choose to do with it, one way or another. Having a knowledge like this and having to keep it largely quiet was becoming detrimental to my well-being. And no, I do not reveal my sources. Think of me as a journalist, and of this entry as part of the free press.

It's okay share your feelings ....


Friday, August 24, 2012

Mechanical Failure

Once upon a time, I had a college roomie from India who was amazed that I knew how to operate a washer and dryer, remove and clean a sink trap, and fix a constantly running commode. She grew up with house servants who did all these things for her, whereas I grew up a poor white kid in the Midwest whose only notion of servants came from fairy tales. When I taught her -- mouth agape -- how to measure detergent and operate the knobs and the coin slide on one of the Maytags in the laundry room, I felt like some kind of mechanical god.

And that, my friends, is as far as it ever went.

Just like my friend over at The Clerical Error, I am slowly becoming domesticated. Not because I own a house and have a husband and three kids, but because I'm exactly the opposite: I live in a tiny apartment alone, and I can't stand most of the maintenance men around here. They don't understand the concept of privacy too well: it does no good to stand outside the door and holler "Maintenance!" while simultaneously opening it. Defeats the purpose of announcing yourself. And so, when something goes awry, I have started having a go at righting it myself. This usually means doing everything short of blowing it up and then asking for help anyway, but hey, I'm getting there. I think.

Given disability, there are certain things I cannot do: change the bulbs in the ceiling lights, for instance. I have my Dad for this. He's tall. He also does anything requiring a power drill, because I refuse to own one. I'd kill myself with it. There'd be a headline in The Express: "Local Woman Dies of Blood Loss Following Tragic Drill Accident." And underneath: "Tried to Reattach a Towel Bar." But I can patch drywall now, and change a toilet pump, and caulk a tub. So maybe you're thinking I sound pretty mechanically astute, right?

Wrong.

There was one day not too many years ago when I tried to change out a phone jack and ended up curled on the couch with a bottle of Fisheye, weeping like a small child. I'm about to fix the curtain rod in my living room with duct tape. Just this week I attempted what should have been a simple fix to my Internet connection, and somehow ended up setting my computer's firewall to block my wireless signal. I spent three days sans Internet before I finally broke down and called tech support. The guy on the other end had to mute his line a few times -- he was laughing, I suspect. And today -- today I discovered that air conditioning units have filters.

I know, right? Astounding. I was aghast.

My AC isn't set into the window properly (not my fault; the Housing Authority put it in), so every so often water collects inside the unit and turns to ice, which then gets caught up in whatever makes the air conditioner actually blow air. The result is usually that it blows out the vent like some improvised weapon of war: "Domestic Missiles! Now With Freon! Get Yours Today!" Occasionally, though, the ice stays stuck and the AC screams like a dying animal.  I usually  solve this problem by simply turning the unit off and waiting for the ice to melt, thereby propagating a viscous cycle. (There should be a sign on my door: "Watch for Flying Projectiles.") Today, I decided against this and actually went to knock the ice out of the unit myself. When I couldn't dislodge it after pounding on it a few times, I took off the front to peer inside and voila! a filter.

It. Was. Disgusting.

I guess this is to be expected, since I didn't know it existed for 2 years. I gazed at it stupidly for a moment, and then the light bulb in my head finally came on: "Oh. This is like a lint trap in a dryer." I cleaned it, feeling kind of like the first Astrolopithicus Aferensis to ever stand on his buddy's shoulders to reach a piece of fruit: brilliant, but stupid. Very, very stupid. All I could think was, "How could I survive to the age of 27 and not have figured this out?!"

And now I'm preoccupied with the idea that there are other simple mechanical things like this that I don't know, that are just waiting to pop up and present me with my very own Darwin Award. I'm stalking my appliances, giving them the eyeball. They're up to something; I know they are.

It's a conspiracy.

Thursday, August 23, 2012

Public School: The Special-Needs Perspective

Thanks to some "disability networks" I'm part of on facebook, around this time of year I start getting pictures of kiddos on crutches and in wheelchairs darting off to their very first days of school, all smiles and happiness. Poor babies don't know yet that public school is like some special kind of Purgatory for the handicapped. I want to wrap my arms around all of them and pull them in close to protect them from the bullies that will tease and taunt them, and possibly trip them in the hallways and spit in their Lunchables, trap them in bathroom stalls, and make quacking sounds as they walk past. It's been almost a decade since I last saw the inside of your average public school, and I still remember days spent crying in the restroom because some little sadist hacked up a snot ball in my lunch tray or gleefully gave me candies that had been dropped on the floor first, just to have the pleasure of crushing my little soul when it was revealed that he wasn't, in fact, simply being friendly.

Most of these networks are run by parents with disabled children, as a way of meeting one another, getting advice, having a shoulder to scream on. And I think that's great. Every parent needs that sometimes, I'd bet, and parents of special-needs kids likely need it more often than most. It has to be an incredible kind of hardship, raising a disabled child. If I'm to be completely honest, it was probably this very hardship that sent my mother flying off the edge of unstable and straight into a serious deficit of sanity. To begin with, there are a thousand trips to medical specialists: pediatric orthopedists, makers of braces and wheelchairs and walkers, surgeons. Then countless days spent watching your child suffer great pain at the hands of those surgeons, being reconfigured and encased in plaster, hooked to morphine and catheters, enduring assaults by saws and needles, and then therapy: physical, occupational, speech; whatever it is it's frustrating and it makes kids cry, and PT is the worst of them all. I had my hips, quads and hamstrings done all at once when I was 7, and the way I screamed when a therapist touched my legs probably tore people's hearts out. I can still remember it, unfortunately. My whole self burned with hurt. A few times I fainted. I can't imagine how it must be to be a parent, watching all this and helpless to do anything about it.

Maybe that's why parents of disabled kids, the ones who don't lose it completely like my mother did, operate with a special kind of blinders on whenever they can. They've seen enough hurt; they want to believe that something will be "normal" for their child for once. And maybe it will. Maybe all those kiddos going like gangbusters for Kindergarten will have excellent public school experiences. But that little niggle in the back of my mind, the voice of experience, just can't bring itself to buy that. I know people who have had exactly that, but they are few -- and sometimes the shrewdly trained consciousness can tell that some of the cheer and grinning is for show. Because disability marks a person. It just does. It's inescapable. And when you need things other kids don't need, you have to haul around your differences like luggage from planet Freak. I took a walker with me into 2nd grade. Ungodly noisy, boxy thing that squeaaaaaaaked and rattled with every step. In Kindergarten, I had a classroom aide to follow me around: help me get to the bathroom, load and unload my backpack, put me on the bus. I used a specially padded chair, and for years I saw a physical therapist who came to the school and pulled me out of class to stretch me out so I wouldn't lock up like the Tin Man. I think I saw a P.E. class maybe twice in my life -- the rest of the time I had hydrotherapy at the school's pool with two other disabled kids. Part of the bullying problem is that other kids don't understand that these things are essential. All they see is special treatment. Getting to miss class, and going swimming instead of getting creamed with a dodge ball? Totally special treatment. And they resent it. In my opinion, there's not enough education about these things in schools themselves. All teachers ever seem to say is that "Little Johnny is just like you," but kids aren't stupid. They can see plain as day that Little Johnny is different -- and so, for that matter, can Johnny. Tell him he's just like the other kids, and he'll break himself in half trying to be exactly like them and wondering what makes him a persistent loser because he can't manage to fit in. If you ask me, this just undermines Little Johnny's self-esteem. Children should be taught tolerance and integration, and respect for differing abilities. In an ideal world this would happen at home, but many parents are too busy or don't care or never learned any of this themselves, and are too afraid to approach the subject. It makes them uncomfortable, I think. Everybody wants their blinders sometimes.

If I could make a job for myself touring the school districts around here and giving presentations on inclusion to schoolchildren, I'd do it in a heartbeat -- but that's no job title I've ever heard. Maybe I should just start cold-calling preschools and elementary schools and offering myself as a speaker free of charge, because seriously, I'd do this for free. I remember the hell I went through during my school years, and it still pains me to wonder how many of those pictures of happy little faces headed off to class will come back at the end of their first day confused and disenchanted. It makes me go all snarly and protective. There are things to be said for bullying and a positive correlation in character building, but there is such a thing as way too much for a child to be forced to handle. And something tells me that educating children about disability would be a better outlet for my convictions than cracking some bratty little heads together.

This idea ... it's worth something, I think. Maybe I'll try to figure out how to get started with this.

Saturday, August 4, 2012

And Then There Was Bored.

I've had my mind on crafty, artsy stuff of late. I mean, the part of my mind that isn't occupied with perusing the Classifieds and searching for various certification programs, volunteer opportunities, and boards to serve on to make myself more employable. I'm even learning Spanish again, in part because I love the lyricism of it, the pure poetry of everyday speaking in Spanish, and in part because being bilingual will make me a prize to win in the human services field. Ulterior motives: everybody has 'em.

This was my first project. It holds my remotes now.
In the past few weeks, I have amassed a giant stack of 2 for $1 coloring books, plus enough crayons, markers, and colored pencils to outfit three kindergarten classes. I went to a closeout sale at a craft store downtown and came back with an armload of supplies (see left; note the colored pencils); and then went thrifting and came back with cheap junk to transform. I'm missing a few things I either blanked out on or didn't realize I'd need, like paintbrushes, a hot glue gun, and some Mod-Podge, so some of my ideas have been put on hold till I'm not broke-ass and can run my butt up to the LHU bookstore and get them. (They're expensive up there, but it's the only place in town left with crafty stuff now. They keep it for the art majors.)

I've also been hitting Pinterest for no-sew ideas for old t-shirts and decoration tips for leftover wine bottles, empty oatmeal canisters, etcetera. I want to start brewing my own tea with fresh ingredients. I'm even (gasp!) learning to cook. I usually make something at least passable, though I really had to try to choke down the trout I marinated in garlic and cracked black pepper earlier this week. As it turns out, those two things together do not work well with trout. I make a really good turkey burger these days, though. I'd give you all the recipe, but most of the ingredients are measured in quantities of "some": Pat out burger and simmer on low until cracks form in the meat as it cooks. Add some barbecue sauce. Flip. Repeat with other side. Turn up and cover. When burger is nearly done, return to a simmer. Add some pepper, some salt, some cayenne, to taste. In a separate skillet, "toast" bread by spraying each side with olive oil and allowing it to sit 10 seconds on each side. Sprinkle some salt over bread, if desired. Remove burger from flame. Assemble, dressing it with a fresh spinach leaf and some fat-free feta cheese. Nom. (See?)

I've even had this idea to make a comic that shows how funny it can be to live with a disability. Not like a strip; more like Rage Comics. I tried it one night in Paint, but I have a hard time with it. I can't draw, not even on the computer, not even when the tools are right effin' there to make the lines and the circles and crap. I have discovered I have difficulty perceiving proportions -- not that it matters so much in a Rage Comic. I'll try it again when I'm feeling particularly patient, because I'm not kidding about the not being able to draw thing. Ask me to draw, say, a bird, and you end up with something like this:

Told you. 

Sheer boredom is causing this. A.) I'm not employed yet, and B.) There isn't a lot for people with disabilities to do around here. Most of the time I get to choose between: take book to restaurant and read over dinner; take book to coffee shop and read over chai latte; take book to Veteran's Park and read behind monument. Y'all know I don't have problem one with the idea of reading, but come on. Woo. SO recreational.

I am thinking about asking the guy down at the karate studio if he will modify lessons for me, or let me join the Spinning class that meets for half an hour every Tuesday. I know I couldn't keep up, but I just want to ride the bike without having to pay the membership fee. I'm broke-ass, remember? So very much so, as a matter of fact, that I have started looking into freelance writing  gigs as a way to make my loan payments. There's a site called Odesk that freelances pretty much everything you can think of. The pay is pisswater: usually $1.25 an hour for a 30-hour-a-week gig, but a loan payment is a loan payment, yo. I've also considered putting up flyers around town advertising that I will edit papers, and record books for the blind or for car trips and such. I love to read aloud. But no one seems to agree on a price to set for these services. Should I charge per word, or per page for papers? And how much of a chance do I have of making this work when students can get their papers edited at the university, and people can get audiobooks at the library, both for free? Sigh.

In an effort to keep myself busy, aside from arts and crafts, I have an appointment next week with the lady at United Way to talk about volunteering. I'm trying to get into the PA Peer Support Coalition, and I signed myself up for a free Veteran's Administration-sponsored webinar in September to learn more about VA programs and laws and funding sources and such. I need to keep learning. I realized in the first couple weeks after graduation that it was the learning, the consistently having some new skill or challenge to master, that was keeping me from getting depressed. So between volunteering and learning Spanish and taking free classes wherever I can find them and beating the job market to see what falls out AND crafting/coloring, I *think* I can manage to keep myself sane. Time will tell, I reckon.

Tuesday, June 26, 2012

Therefore I Am.

It always starts with a creeping feeling of being different. Of being somehow wired differently, in some fundamental way. It sneaks up to me and whispers, You are not of these people, and as soon as the thought has been had, I know it's true. That I've been fooling myself, thinking I can have the kind of faith I see around me and still be who I am. From the outside, it's all I want. When I get inside, I can't put it away from me quickly enough. It smothers. It does not think; it just blankets everything and takes away its value, makes the things I love into things that are said to be shameful. I take a thought and think it as I am so wont to do, turn it over and peer at it and study all its nooks, come up with an answer I can live with, and then immediately compare my answer to the answer of the Christians around me and feel some kind of way about it: sorrowful, or guarded, or angry. Never satisfied.

Example: sexuality. And I'm not talking gay, straight, or bi here. I'm talking sex, period. Any kind of sex. Kinky beyond imagination or good old-fashioned, straight-laced, missionary-style, stay-under-the-covers and for-heaven's-sake-leave-the-lights-off sex. Last time I was at church, I got treated to a sermon on my church's thoughts about sex and felt like I should have my hands cut off, my eyes burned out, and my dirty, dirty tongue removed from my mouth -- and then I got pissed, because religion has been shaming biology for centuries. For the sake of trying to explain what I mean, I will confide that I once conducted an experiment in my own personal sexual values, to wit: I wanted to see if I could have casual sex. Just go out and have sex, all "Slam, bam, thank you ma'am." So that's what I did. As luck or whatever you want to call it will have it, there seem to be a lot more people willing to lay you and leave than there are lay you and stick around to love you. Out of curiosity, I found one of these ladies and, well, laid her. And summarily got laid by her. (And if this kind of talk bothers you, go grow up and come back later.)

As it turns out, I did not enjoy this arrangement. Zero fun. I actually got bored right in the middle of the whole process. Casual sex is not for me, but I don't feel the least bit ashamed of myself for having tried it. And if I had enjoyed it, I'd still be doing it, and I wouldn't be ashamed of myself then either. You know why? Because I am a human being. I have biological drives. Caging or stigmatizing them in ways I do not feel compelled to do is against the very nature of nature. I've always thought it ten thousand different kinds of extra-special bullshit the way we human beings keep clinging to beliefs that are fundamentally designed to shame us. It's almost as if we want to be punished. Religion defines morality, and morality defines religion. It's screwed up.

Example: Sanctity of Life Sunday

I once heard someone say during a sermon on this particular Sunday morning that there is no such thing as an unwanted child. I almost got up and walked out of the church right then. Say that to an unwanted child. Obviously this woman had never been and unwanted child, or no such thing would have ever left her mouth. She was raised in a nice Christian home by a nice, law-abiding family. She was treated fairly and with kindness. What about children whose fathers rape them, whose mothers sell them for cocaine? Children who waste away in their cribs because no one can be bothered with them? Tell one of those children there is no such thing as an unwanted child, and see what she says. I don't feel I'm amiss in my conviction that sometimes, no life is better than a life of misery and suffering. I personally could never have an abortion, but I am not ashamed to say that I don't find it completely repugnant and that in some cases, I even advocate for it -- and that in any case, it is not my place to choose for someone else what to do with a pregnancy. I am not the Procreation Police. And to head off a common argument: yes, I value my life and I want to keep it. But I have no memory whatsoever of being a zygote or a fetus, and therefore would not value life if I had never known myself to have had it. You can't miss something you aren't capable of identifying as yours.

To be perfectly honest, I would be better served right now by making a list of things I do not believe:

1. I do not believe Sin fell upon humankind because Eve ate a damned apple. Ridiculous. It's a myth, a tool to explain why bad things happen in the world. Every religion ever conceived has had such a story.

2. I do not believe a man named Noah built a boat and put two of every kind of animal that has ever existed upon it. I call shenanigans. Do you know how many species of insects there are, alone? Millions. There exist on this earth animals no human eye has ever seen. The Ark? Myth, myth, myth. Look up The Epic of Gilgamesh. 

These are just a few things. There are more. Many, many more. Jonah got swallowed by a whale and lived in its belly? Bullshit. Samson was strong because he had long, luxurious hair? Bullshit. What boggles my mind is  the general inability and/or refusal of so many people around me to see these things as what they are: stories. Fables really, generally having morals apparent or hidden. What's even worse is the way things are twisted to suit so many personal uses:a thing is a story when that suits us, or a hard and fast commandment when that suits us.

I'm not saying anyone from my church intentionally does any of this. They don't. It's all subconscious, but then, that's the problem: so many people only think that they are thinking, or learning, or teaching themselves -- when really what they're doing is regurgitating everything they've been told to think in slightly different costumes, so that essentially everyone ends up with the same damned circus.

Sometimes I envy people this. Sometimes it seems that I was born a thinker, an analyst, a cynic, a truth-seeker, and that I have never been truly at rest in my own head since the moment I knew I was alive. Sometimes I think it would be a relief to be one of the sheeple, to walk within well-defined parameters. It's hard to think so much. Sometimes I think things that absolutely terrify me, but I can no more not think them than I can hold my breath and expect not to faint. All this thinking is a part of me, even when I want to run from it screaming with my hands over my ears. If I cease to think, I cease to be. I think, therefore I am. If I think not, I am not. Etcetera. 

I try to tell myself that I can hold to my own convictions and continue to commune with my church-going friends on a sermon and study basis just to take what I need and leave the rest, just to feed my own spiritual hunger and leave the table when I'm through, but I have an inherent problem with this: it's a lie by omission. I have stopped going to Bible study because I don't believe that one book is the be-all and end-all of the Divine will of the universe, but I don't have a right to dismantle the faith of people who do. By trying to work my spirituality into their sanctions and biting my tongue instead of calling bullshit, I am leading them to believe that I am of like mind when in fact I am not. I don't like this because I don't like fooling people to achieve my own ends. But spiritually, I am lonely. I have only met one other person on par with my thoughts in these matters: Biz. Without her, I would be stranded on a desert island of spiritual isolation, and I am overjoyed to have her. But something in my human make-up craves more ... belongingness, is the only way I can describe it. I usually laugh and say I flout convention, but the cold, hard truth is that we all want to groupthink. We all want a merry little band of kindred spirits to bop around with. I belong to a group of people who like to say we laugh and flout convention. I need that. And I need something else, and I'm not getting that something else.

I often wonder if I keep trying Christianity because it's ingrained. I run forth and keep hitting a wall: bump, bump, bump. Then I wonder if I'd fit in anywhere: would a make a good Buddhist or a Hindu or a Taoist or a Pagan, or an adherent to Pastafarianism? All Hail the Flying Spaghetti Monster; holy is He. Sometimes I wonder if deep down I'm an atheist, and the thought terrifies me so much that I'd rather keep fooling myself than admit it. Why else would I keep putting my idiot self through this?

If my brain had an "off" switch, I might actually rest someday.

Sunday, June 10, 2012

"How to Live with a Calculating Cat"

A few weeks ago, my dad bought me this delightful little volume:


It has a sequel, "The Calculating Cat Returns." 
This tiny tome illuminates the many ways by which cats, throughout the course of history, have manipulated humankind from "top of the food chain" to "humanoid slaves." But I'm quite sure it has missed a few methods, because I have a cat hellbent on creating new ones. People lovingly refer to my beast as having "personality." Do not be fooled: this is just a rather nice way of saying he is especially devious and entirely too narcissistic for anyone's good. Cats, you might argue, are naturally devious and narcissistic. This is true. Don't get me wrong: I rather like cats. I'll be the first to disembowel you if you lay a hurtful finger on mine. That being said, however, the beast called Jude could win awards for devious narcissism. In case you aren't convinced, here are a few of his "personality" traits:

1. If I spend too long away from home, (by which I mean, like, an hour) Jude is quite likely to throw himself onto the floor behind the front door and stick his adorable little white paws out into the corridor, where he makes the little paws go, "Pat, pat, pat" on the tile while crying piteously. This has been known to draw a gaggle of old ladies to him, so that I arrive home to find four of them sitting in the hall outside my door stroking the little white paws while their owner purrs like a diesel engine. The ladies make noises about how sad it is that the poor wittle baby is home alone, and the "poor wittle baby" spends the rest of the day looking smug and self-righteous.

2. "Poor wittle baby" will do something he knows darn well he isn't supposed to do --walk back and forth on top of the dresser, endangering the wholeness of my Granny's dolls, for example -- just to get my attention. I will impose appropriate sanctions (i.e. picking him up and dumping him unceremoniously on the floor.) He will express his displeasure for about thirty minutes by turning and presenting me with an unobstructed view of his butt every time I glance his way, after which he will pretend to have forgiven me and beg and beg for me to play with him. Sometimes our games go swimmingly. Other times, depending on the severity of the bruise to his ego, he will suddenly flatten his ears, bite me hard enough to provoke a shout, and then hiss and run like hell. This is not play. It is deliberate punishment. I have lived with this cat long enough to know the difference.

3. He smacks my dates. Picture a winter's afternoon about 4 years ago. Then-girlfriend and myself are sitting side-by-side on the loveseat, holding hands and talking gooey to each other. Needless to say, we have not been paying attention to him: in fact, we've just concluded a marathon makeout session, during which we paused from time to time to poke fun at him as he slumped in a chair across the room, looking more and more dejected as the hours passed. Sensing that we were finally finito -- at least for the day -- El Juderino abandoned his post to jump up into my lap. He paused a moment to rub his head under my chin, then walked regally into ex's lap, looked her straight in the eye, drew back a paw, and slapped her silly. Then he hopped down and calmly walked away, tail in the air like a flag of victory. (Leaving ex going, "Oh my god, the little shit hit me!" I told her to stop calling my baby names, because it's not like he actually has claws. Looking back, I should have seen this as the first in a series of events that led to the dissolution of our amorous partnership.)

Still not convinced? Alright, alright. If that last item can't convince you I'm not sure anything will, but consider this:

4. For the past few years, Jude has been on an absurdly expensive prescription diet. This is due to his propensity to produce crystallized urine and develop urinary tract infections. His pH is, um, "Whack." Said food balances his whack pH -- for approximately $51 per 17.5 lb. bag. Thankfully, it works. It is also super-duper nutritious in a variety of other ways, and very nutritionally efficient: it's so packed with everything he needs, it can make him rather fat if I don't watch his portions. The vet said to feed him 1/2 a cup per day, but I feel sorry for his rumbly tummy and give him a whole one, split between morning and evening. On top of this veritable superfood, he gets treats and the occasional can of Fancy Feast or little piece of chicken or steak. He is not at want for kibbles OR bits. He is glossy, soft, and even a bit chubby. This does not stop him from trying to convince me that he is starving to death. Previous attempts to force me to feed him have included howling like a banshee, tromping back and forth on my bladder at 5 a.m., throwing himself at the closet door till I'm convinced he'll either break the door or a rib, ripping up paper towels and kitchen sponges, and simply staring hot little holes straight through the center of my soul and out the other side. His latest ploy is desperate, even for him: he has been known to eat no-see-ums off the floor and gaze at me pointedly the entire time to communicate the dire straits I have put him in, but lately he has taken to eating little carpet-y bits and other oddments and then PRETENDING TO THROW UP, hoping I might feel sorry for him and give him more food to replace his falsely regurgitated stomach contents. (I do this for him when he is actually sick, except then I soak it in broth first to make it easier to digest. He knows this. He likes it. A lot.) That's right: my cat tries to fake me out with made-up illnesses. He practically plays hooky for food. He would sell himself in the street for food if I'd let him.

That, my friends, is a Calculating Cat. He dares you to prove otherwise.