The last time I wrote, I had left school to stay with my parents and hopefully get on disability as a result of my chronic pain condition.

Well, that was a no-go. I was denied, of course, on the grounds that they had no idea what the hell I was talking about. So while I was re-submitting my application I had to get a little creative and see if there were not some other way I could try to get my life together.

Insert montage of the last 6 to 8 months of my life. It was probably the worst I’ve felt, emotionally, in my entire life. Nothing makes you feel like a failure like dropping out of school, living with your parents and having no job or future, and that’s hard on someone who lives with chronic depression. It was a strain on my relationship, too, to have to go back to long-distance living when we were used to being on the same campus at college and seeing each other every day.

After some time my partner convinced his parents to let me stay with them. They live in an urban area where there’s more work opportunities than the pastoral countryside I grew up in. So, with a medication adjustment to hopefully manage the pain better, I hopped ship.

That was difficult too. His parents were kind to me for the first two weeks I lived there – perhaps it felt like a vacation or a visit to them during that time period – but after that, it was a living hell. They started badgering me daily, wondering why I didn’t have a job less than a month in (recession? bah!), threatening to throw me out at least once a week. Never mind that I stayed out of their way and hair, and when I wasn’t job hunting I was cleaning their house or quietly reading a book – it wasn’t good enough.  I had miniature breakdowns and crying jags because I couldn’t handle their passive aggressive mistreatment.

At the start of the summer I managed to catch a sales position with an electronics company. My boyfriend and I pooled our meager resources, and snapped up a small two-bedroom in a nearby city, where we are currently living with our two cats.

So there we are. New apartment. New job. New life.

Our budget is so tight it squeaks, of course, and I’m working too many hours for hardly any pay, but looking over the past year I have hardly any room to complain.

And I can finally stretch these writing fingers and really start to fly.

Things have been busy lately – I finally decided (heh, implies choice) to leave the university and move back in with the parents, so there’s been a lot of forms to sign and boxes to move.

Tonight I tried, for the second time, to put in my application online for SSI disability benefits. (Yes, I know, wait for it.)

Now, I don’t have a good history with the social security office. The two times I visited one, I was brushed off. I don’t know if they took one look at a mostly able-bodied young girl and said, hey, she must be trying to trick us, but it sure as hell felt like it – they told me that I needed to apply online, entirely online, and that they were so far booked into the future that there was just no point in scheduling. As in they refused to schedule me.

And lo, as I am filling out the disability report tonight, not only do I lose the internet and all my progress, but I just happen to notice before it goes down that you can’t apply for SSI online, you can only fill out the adult disability report, print off a few forms, and schedule an interview. You know, that interview that my local office couldn’t afford to give me.

So I call up the hotline, and I manage to get a really sweet lady. Only problem is my local office is so far booked into the future that they have to call me to schedule – sweet lady said if I don’t get a phone call from the local office in a week I’ll have to call the national hotline again.

So… that’s a week, plus about three months or more until the next opening, plus the three to five months of processing?

Here I am, trapped in my parents house, beyond broke, bills to pay off, no job no school no nothing, and my one ray of hope is now months upon months away. I’m starting to cry again, wondering how I let myself get to this point, wondering what the hell to do. I’m an inch away from saying screw it and getting a job, even though my rational brain knows that CP + chronic pain = disaster. My last job proved that.

Anger and rage and fear are all bubbling away in my chest. I want to find every person that talks about folks “milking social security” and claw them in the face, because they have no clue how bad I need this money, what feels like to be laying face down in an employee bathroom in agonizing pain and realize that everything is slipping through your fingers.

…You’ll have to excuse the dramatics.

I’m feeling pretty low right now.

For instance: Whenever anyone uses the word “crippled”, I spot it from a mile away. Context doesn’t matter – it could be in anything – a novel, a newspaper article, a headline. “Recession cripples the American economy”, or “The onslaught cripples the meager defenses” or simply “crippling blow”.

I never use the word crippled when writing unless specifically talking about my experience.  I think in synonyms: crushed, crunched, consumed. If pressed, I stretch further: decimated, destroyed,  dissolved, eradicated, erased, extinguished, sapped, sullied, stymied.

On and on, anything but crippled. And this is not an intentional thing: I don’t say, ‘Crippled sounds like a good verb here, but I hate that word.’ I don’t write it and then erase it. I merely stumble across it in someone else’s writing and think: ‘Wouldn’t crushed have worked just as well?’

Same with the word limped. That I openly admit I don’t like, because it’s so often used as a highlight, like, Oh, look what happened to our poor hero, or, Here is this mysterious person with a mysterious injury, you must find out why they do this. I’m not a puzzle piece, some tragic hero, who saved the world but paid for it with my legs. I understand the word isn’t always as loaded as this, and I understand why writers may choose employ it.

But as someone who has experienced this kind of prying “opener” in real life, I just can’t use it. I can’t divorce myself from the character, divorce myself from the painful memories of having such a physical marker, of carrying it around with me. Perhaps one day I’ll get over this and be able to bandy the word “limping” about like other authors do – he limped to the store, he limped out of bed, he limped all the which way – but I’m not sure.

Another example of words I don’t say: I don’t describe people physically. If acquaintance A hasn’t met acquaintance B, I don’t say, “Oh, you know B, she’s tall and blond and good-looking and…”

I’d much rather say how I met a person, or what we have in common. I only fall back on physical description when nothing else is working, like casting a line out into far water, and even then I stay so generic it’s almost meaningless: “Oh, B, I met her in the book store last Tuesday. I told you that we both picked up that new memoir?… No?… Well, um. [long pause] She’s… average height, I guess…”

I think the first time I realized this was about a year ago, when a then-friend stopped by my apartment to chat and catch up. She was telling me about one of her roommates, saying something like, “She’s got kind of crazy red hair, and wears glasses, and she’s a paraplegic or something… I think one leg is shorter than the other, so she has this kind of crazy walk,” A laugh, as she mimes staggering with her hands, one sinking and the other wobbling, “You really can’t miss her on campus.”

I can’t recall exactly what I did – I probably laughed nervously, which is my general reaction when I’m in shock and have no idea how to respond. ‘Is this what she thinks of me?’, I remember wondering. ‘Is that how she describes me – as the girl who walks with a limp?’

It always upsets me when I hear people described in this way – the words people use. It just seems vaguely unfair. I understand that people don’t always mean harm – it’s just the easiest and quickest way to identify someone. A trait. But for them, it’s not loaded, it just is. Whereas for me it’s like running around telling everyone I cheated on a spelling test in the third grade.

I have my own words I use to describe myself. Writer, I like to say, not to be pretentious, but because it’s an extension of me. Who am I? I’m the writer, the reader, the bibliophile who has loved literature since she was born, the one who has post-it notes all over her computer with ideas she’s too shy to write out, the person who wrote her first story on orange construction paper. Not skinny-small-mousey-girl, and definitely not girl-with-a-limp.

Some words I say.

Some words I don’t.

To make it worse, my health has been poor, I’ve lost several friendships that I considered very dear to me, and my romantic relationship has gotten a bit… bumpy.

So I must again ask you to bear with me. I’m hoping to update within the next couple days – (Writing is therapeutic, I know this, but I avoid writing about the most painful things – don’t we all?) – but I’m trying to convince myself there’s no rush. I can get quite stressed / neurotic about what I consider my “obligations” and “responsibilities” – mainly the infamous I CAN’T EVER EVER LET ANYONE DOWN OR I’M A BAD PERSON syndrome.

If there’s anyone, anyone at all, out there reading this… thank you.

After watching a documentary on oil consumption in the United States (“A Crude Awakening: The Oil Crash”), I’ve been giving more thought to my own carbon footprint and what I can do to help planet Earth. And there’s some things I’d love to do to “save the planet”, but because of one disability or the other, it’s just not feasible. Here are two examples, with some side-notes:

1. Riding a bike. Because of my cerebral palsy, I’ve never learned to ride a bike. Or at least not a “real” bike – meaning a bicycle. My parents started me out on a tricycle, like most kids, and I did just fine. But beyond that, my balance was (is) too shaky. I couldn’t maintain a center of balance – forced on the seat of a bicycle, I wobble, and shake, and fall over.

My parents bought me a modified tricycle, called a banana peel, when I was a young child.  It was bright yellow, with a sling of fabric for a seat, and a tall orange flag attached to the back so that oncoming traffic would have a chance to see me instead of flattening me into the pavement. To this day I’m not sure why they bought it – to appease a child who desperately wanted to ride bikes? Something as simple as making sure I would get exercise? I don’t have a very good memory, and especially not regarding my early childhood years, so it could have been any reason.

Anyway, I really enjoyed riding it. I liked pedaling around, the wind in my face, eyes roaming the fields. But my parents were always after me to remember to “stay close” – the roads were winding, with sharp curves and steep embankments, and it was quite possible that a car would hit me regardless of the flag on the back – and my grandmother hated me visiting her by biking down. And, I think, on some level it started to sink in that I would never graduate from the banana peel to a “normal” bike, and that none of my friends would ever own a bike like mine. So eventually I stopped riding it altogether.

I haven’t ridden any type of bike since. And, since I’m not living in a metropolis, it’s rare that I can walk wherever I need to go. So it’s my car (modified, by the way, but that’s getting off topic) or nothing. And to be honest, I have a lot of emotional attachment to that car – it’s my mobility, it’s my freedom, and it’s my safety. And I realize how fortunate it is that I learned to drive, because it’s always been so calming and empowering to me.

But of course there’s the whole emissions and fossil fuel dependence complication. I’d like to change my car dependence, but I have no idea how to go about it.

I’ve done zero research. This is probably because I am easily discouraged and whenever I’ve gone into bike shops, the only bikes that are stable enough for me to ride – i.e. some kind of tricycle – are generally considered something your grandmother would ride, and only then if she wasn’t easily embarrassed. I’d like to ride something, yes, but I want it to be stylish and affordable and something that won’t automatically make me look like a circus clown.

To be honest, I have a complex about “looking” disabled (and that’s a whole other twisted can of worms, oh god, so please keep in mind I know how messed up that is and take that statement at face value and avoid leaving me angry comments) and I’ll flat out refuse to buy something if there’s a chance that someone will point and say, there’s the crippled girl on her funny bike, isn’t she just so determined? No. Just no, thank you. Take whatever complex blend of pity and amusement you have and shove it, I respond to this imaginary person.

2. Reducing water consumption. This is something I’m good about in small ways – turning the tap off when brushing my teeth, for example – and bad about in larger ways. I have a medical disability called vulvodynia (which is essentially a catch all term for “pain of the vulva”). During my episodes, my pelvic area is engulfed in burning pain. I feel much as if I am burning from the inside out. And the only way I’ve been able to get through these periods is by taking a long hot bath.

When I’m having a particularly bad week – such as this one – I can take anywhere from one to four baths a day. Obviously, that’s a lot of water. And yeah, I’ve read a lot of research on the global water crisis – I talk about it, read about it, make sure to avoid all bottled water by carrying around a thermos of water from the tap, etc. But there is absolutely no way – no way – that when I’m in the throes of pain you’ll be able to quote to me about lake beds drying up. I’ll claw your face off and then pour my bath anyway.

So, until next time, there are my two environmental stumbling blocks. If anyone has any thoughts or suggestions I’d really appreciate you leaving a comment.

Like dropping a pebble into a pond, I have to deal with the ripples – but, thankfully, not all of them have been negative.

Like the incident of a few days ago: I was sitting in the Science building of my university, waiting for my partner to finish an appointment with an adviser.  Left with nothing to do, I whipped out my iTouch and tapped at the screen with bored indifference. My attention was eventually distracted by a small scuffling noise and the appearance of legs in my peripheral vision.

It was a girl I had encountered a year or two prior. She had made a brief cameo in one of my sociology courses, where, after listening to the professor calmly explain the main project on the syllabus, she interjected briefly of the values and skills possessed by drag kings. I was fascinated – and, later on, crushed when she vanished from the class.

I had seen her on campus a handful of times since then, and barring a few exceptions almost all of them ended with us quietly skirting each other without a word. (One such exception was bumping into her at the career counseling office, where I congratulated her on getting a job there and she showed off her new sleeve tattoos.) But she approached me with the type of easy confidence that implied none of these awkward moments had ever happened.

“Hey,” she said. I probably blushed a little in response. Her face cracked into a huge grin, and though her gaze never technically left my face, I could feel her absorbing my new look. She noticed – and she liked it.

The next five minutes were composed of idle chit chat, but internally, I was walking on air. I’ve had quite a few compliments thrown in my direction before and since, and they’ve all helped me feel positive about my decision.

However, any time a woman does anything this drastic there’s going to be naysayers. The main detractor is, course, my mother. (Cue the groans – yep, come on, get them all out. Silly rebellious college student taking about her mother, blah blah blah. Old hat.)

Some highlights of her responses from the initial, terse phone call in which I told her what I had done:

• “The world functions on first impressions, whether you like it or not.”
• “Don’t act like you’re some daredevil or crazy rebel.”
• “Do you know any straight girls who shave their heads? Do you?”
• “I thought you were over all this… experimenting with your hair.”
• “You can’t tell me it’s not a mannish, dyke-y kind of look.”

In some ways, I really can’t blame her for being upset. My brother is transgendered and sports a similar look, and so she can’t help but associate the loss of hair with her own personal sense of loss as a parent. She’s still wounded over my brother’s perceived injury, and it doesn’t help to have her younger daughter showing up looking like a smaller, more fragile clone.

Some people may be inclined to ask what kind of asshole would do this to her mother.

I don’t really have a defense. At certain points in the conversation, hearing the tears in her voice, I asked myself, “Why am I doing this? I really am a horrible, horrible child.”

Then, I flash back in my mind to the moment when my hair was falling all around my ears – the sense of exhilaration humming in my body, and the resulting child-like fascination when I saw my bare scalp for the first time. I felt truly and completely happy.

If you were to ask me what I would like to look like, I would say I would like to have either a shaved head or a freedom fighter haircut, several piercings, and a pair of bright sleeve tattoos, to start with. When I look into the mirror and I do not see these things, I am unhappy. I don’t mean casually unhappy, like when you have to wait in rush hour traffic or you spill your beverage in your own lap. I mean deeply discontent, like my body is made of too many angles and the wrong shade and everything is just wrong – a dully angry, unjust type wrong.

I’m not sure what this says about me.

Ah, this is getting long, isn’t it? Until next time, my friends…

[Edit:] I cut out a passage because it just sounded too maudlin to me. Maybe those thoughts will wind up in another entry.

First, the counselor that inspired me to create this blog is gone. She was working in the student counseling office under an internship. She’s one of the only counselors I’ve ever met that was able to help me completely open up, and didn’t make me feel like a bug under a microscope. Losing that support was a bit of a blow to the momentum.

Second, my health has been horrible. My medical disability (which I am not sure I touched on to any great lengths and will have to write about later) has been a boatload of trouble. I’ve spent days upon days in bed, feeling exhausted and grumpy and not at all myself.

Third, the trouble caused by my medical disability has been causing me to slip in school. Last semester, I failed courses for the first time in my life because I couldn’t meet the demands of my classes. Considering that I have spent 4 years in university and still have no degree to show for it, my parents can no longer help me with my education.

Suddenly I have to figure out how I am going to afford school and support myself. I’m up to my eyeballs in pages about student loans and disability benefits, and I’m feeling overwhelmed.

I’m thinking I need this blog more than ever.

No, you can’t know what’s wrong with me
It would take years to explain and honestly
I feel way too old

To compromise.
I could use the word atrophy
But that’s such a vague word
For such an old friend.

For now, why don’t you
Leave me and my friend Atrophy be
This crip girl
Prefers the quiet to questions.

It’s only WordPress I’m having a problem with. I can access any other website on my home internet connection. (I stopped by the campus library to post this.) I don’t know what to do about it.

Also, my custom header image dissappeared for no reason that I know of.

But putting the technical problems aside, there are other reasons I haven’t been meeting my regular schedule. For one, it’s finals week (and I feel so woefully under-prepared I could cry). For three (and it’s a very big three), my chronic pain condition has been causing complete chaos.

I’m going to try my best to get back on track, as always.