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.