May 17, 2006

LiveSTRONG

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LiveStrong

Five years ago today, I was preparing to go to IU Med Center in Indianapolis for a bone marrow transplant and just finishing grading student portfolios for the spring semester. I hadn't yet read Lance Armstrong's It's Not About the Bike, so I didn't quite realize that he grew up the next town over from me, although I vaguely remembered reading about him in the local papers and my mom asking me why I didn't do something cool like that. Of course, my answer was, because you won't let me ride my bike more than six blocks away, but that's a side issue.

All I knew was that I thought I had beat the cancer with the first go-round of chemo. Even though I was undiagnosed for two year and had just hit stage IV when I was finally diagnosed (by a MedPoint doctor, no less ... my regular doctor missed the cancer for two solid years ... he never ran a blood test), I was sure that one six month round of chemo was enough to knock that silly Cancer Lite out of my system.

I was stunned when it came back. I was supposed to go to an awards ceremony for one of my students who had won a writing award the evening I got the news that the Hodgkins had returned. All I could think about the bone marrow transplant was what I knew from having read Eric waaaay back in junior high. Bone marrow transplant did not sound fun.

However, the bone marrow transplant procedure had changed a lot since Eric's day and I drove the nurses crazy ... because I actually felt good and had more energy than someone on the BMT ward is supposed to have. I walked ... paced actually ... around the ward five or six times a day. I wanted OUT. I wanted to go outside ... it was summer. I wanted away from the hideous hospital food.

It's been almost five years now since the bone marrow transplant. Five years and my life has changed so much ... not because of the cancer, but just because life is life and always changing.

As far as I'm concerned, SuperChemoGirl has kicked cancer's butt. Here's to the five year anniversary ... and the ten ... and the 15 and the 20 ... and the 30 ... the 40 ... the 50 year anniversary.

People ask me all the time now ... how are you doing? How are you feeling? You all right?
And I'm always confused when they do. Because despite my LiveSTRONG bracelet, I forget that I even had cancer.

SuperChemoGirl
LifePost

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May 15, 2006

One Less Stone

I have been told by numerous people that I ask for special rights. I do not ask for "special" rights. I simply wish that I did not have to be afraid, when everyone else around the lunch counter is discussing what they did with their families over the weekend. Will someone ask me about what I did? When will they get around to asking me the inevitable questions about the ring on my left hand? Is it okay for me to mention in passing that A and I took her mother to the Build-A-Bear Workshop for Mother's Day? Should I play the pronoun game? All of this for fear of losing my job.

When I articulate these fears to those who tell me I ask for special rights, I'm usually told, "Oh, you can't be fired for that." The truth of the matter is that within most companies in the United States, I can. I don't ask for much. I ask to be as safe as is possible in this world ... I ask to have the chance to prove that I am a hard worker like many other people.

In South Bend, Indiana, the city council is currently considering adding an ordinance banning discrimination solely because someone is gay. We're not talking about quotas. We're not talking about having to put up with someone incompetent. In fact, this particular ordinance even has a specific disclaimer allowing churches to be exempt from this ordinance, so that those churches can comply or not according to the dictates of their faith.

Unfortunately, people like Patrick Mangan from nospecialrights.net (I won't give him the status of a link, but you can copy the URL if you're curious) have made horrible accusations about gays. One person at a Common Council meeting even went so far as to claim that all gays were disease-ridden, HIV-spreading heathens.

I hope the ordinance prohibiting discrimination against gays passes. It would be a relief to not have to completely pull away from everyone at work for fear one person will discover and be horrified with my home life. It would be a relief to be able to go into the emergency room with an asthma attack and know that even though I don't have the breath to explain what's happening, the nurse will listen to my partner and will get me the treatment I need instead of telling her to wait outside because she's not "immediate family."

The rhetoric against gays goes too far. To say that gays are disease-ridden, that myself and others like me willfully choose to be immoral and to force our immorality on others - these are the daily stones thrown at me, regardless of whether or not the people throwing stones are without sin themselves.

It would be nice were there one less stone on the pile.

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April 24, 2006

Plank in the Eye

Most of the time, I don't think about being "that" ... about being one of "those people." I'm just me and I don't have time for labels and boxes and I never did. In fact, in junior high, when Izod shirts were all the rage, I got a big alligator applique and had Mom sew that onto one of my shirts. It was my joke to all the preppy kids who just lived and died by whether your shirt was Le Tigre or a real Izod Lacoste. Frankly, most of mine were logo-less Bar Harbor shirts. And of course my patently fake Izod ... I actually had a girl who very kindly took me aside one day to inform me, somewhat nose-in-the-air, that my shirt was not a "real" Izod. It was difficult not to laugh.

I suppose, really, I simply don't understand judging people on things that don't seem to matter much. I don't get why being black should make a difference in how I treat someone. Maybe if they dress "urban" I might respond in a different fashion, try to adapt a little to the culture that person is familiar with ... or at least try to remember which words might mean different things to her than to me. I don't get why I should be suspicious of someone with the last name of Florez hanging around my El Camino. I don't get why I should ask the dude with slanted eyes to do my taxes for me. I don't get why I should be scared to leave my kids with a guy with a lisp and a limp wrist.

I'd really rather get to know the people before i go making decisions. Now if the dude named Florez is sleazy looking and acting nervous or otherwise suspicious, then I probably don't want him near my El Camino or my VW bug.

I really don't get why it would be okay to fire Florez for being Mexican just because "those people don't like to stay in one place too long anyway ... they're all migratory." Let me guess, they like it that way, right?

Or why not selling the house to Huey Freeman is okay because "those people like sticking together and there's none of his kind over here."

The question is, how do we keep these prejudices from happening in our society? If we had a very small society with similar values, it could be done by simple means. You do something everybody else in town dislikes, they'll talk you out of it. But we don't have a very small society and we don't have similar values after some of the "top dogs."

We've come to the conclusion, in most western countries, at least, that we should legislate these types of things. And we've gotten such very mixed results from it.

I don't like the fact that each state has a different set of non-discrimination laws. Nor do I like that various towns and cities have their own ordinances ... or that companies have their own policies which might cover even more than the local laws (and thus that company has voluntarily made itself more responsible than legally necessary). I don't like the fact that these laws list out various "sub-groups" of people.

We ought to be able to pass a law that simply says, hey, stop discriminating against people for stupid stuff.

The problem, of course, is who defines "stupid stuff"?

Is it discrimination to not hire a convicted child molester to work as the cook at a day care center? It probably is ... but it's also good sense to me.

Is it discrimination to not hire a homosexual to work as an elementary school teacher? It certainly is ... but it also seems like just as good sense to some people as the previous example.

My question is why?

A child molester has harmed children and so I'd be awfully anxious to let one around my kids. But what harm is a gay going to do to a child? I don't understand the logic here.

Pedophiles are most commonly "straight" men, not gays. Actually, if we were a little more honest, pedophiles are not straight in any way. A male pedophile prefers children to women. He might be married, attempting to hide from the world what he really wants, but he's not really a straight man.

I got an email from my church earlier today. Calling us to action as our conscience dictates. Our town is debating adding sexual orientation to the non-discrimination clause for city employees. The majority of our church is solidly behind this move because we don't feel we have the right to judge. Our church is not a "gay church." It's a Christian Church (Disciples of Christ) church ... one of the many mainline protestant denominations struggling with the issue of homosexuality.

Back in the late 80s or early 90s, that church was actively looking for a segment of the local population which needed ministry. They did several studies on what the bible really has to say about homosexuality. They researched it, studied it, prayed about it. And this congregation of people in their 50s and 60s and 70s decided to reach out to the gay community because they didn't see any biblical reason not to do so. They saw no reason to condemn folks who loved a monogamous partner of the same sex.

Today, we got an email from the church, telling us of what the opposition is saying about the so-called "special rights" being bullied out of the town council by the pushy activist gays. The website cited frightens and depresses me.

The last paragraph of their site is as follows:

This is not an issue of tolerating what people do in the privacy of their own home. This has become an aggressive attempt to force the moral acceptance of homosexual acts as normal on the entire population. That is why every citizen with Faith should actively oppose these attempts to legitimize homosexuality and the attempts to punish anyone who dares to disagree with these radical homosexual activists. At the same time each citizen with Faith should be learning how to reach out to those who have become addicted to homosexuality and who are suffering the consequences of this dangerous, destructive lifestyle choice...

I had a friend recently tell me a joke that he thought I would find funny. He was rather surprised that I didn't find it funny at all.

A father watched his young daughter playing in the garden. He smiled as he reflected on how sweet and pure his little girl was. Tears formed in his eyes as he thought about her seeing the wonders of nature through such innocent eyes.
Suddenly she just stopped and stared at the ground. He went over to her to see what work of God had captured her attention. He noticed she was looking at two spiders mating.
"Daddy, what are those two spiders doing?" she asked. "They're mating," her father replied. "What do you call the spider on top?" she asked. "That's a Daddy Longlegs," her father answered. "So, the other one is a Mommy Longlegs?" the little girl asked.
As his heart soared with the joy of such a cute and innocent question he replied "No dear. Both of them are Daddy Longlegs." The little girl, looking a little puzzled, thought for a moment, then took her foot and stomped them.
"Well, we're not having any of that gay shit in our garden." she said.

And all I could think of after seeing that joke on my screen was the utter depression ... how do we stop a moving train? How do we reach not only that little girl, but the people that don't understand why that's not a funny joke, why it's a harsh and sad reality for so many.

How do we as a society stamp out prejudice? Does legislation do any real good? Or does it create bitter feelings and martyrs on both sides?

How do we move beyond judgement of petty disagreements and focus on what really matters?

And for those who think that homosexuality threatens the sanctity of marriage, that asking for a few civil rights equals special rights, what's your reasoning? Can we keep the bible out of it since the U.S. supposedly has a separation of church and state? (Because not all religions follow the bible, and yet are still considered legitimate religions in the U.S.)

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April 23, 2006

Learning People

Quite a while back I wrote the first part of this story. I said I'd continue it, and began writing this post back in June ... it's still an unfinished piece, but I thought I'd share it today anyway. Make sure to read the beginning first, though.

So, after the trip to Disney World and watching Lincoln in the Hall of Presidents, I was ready to go back to school just a few months later. I was starting second grade and I was a little nervous my first day. Our school handed each teacher about 30 students at random levels of learning and development and this year I had been moved to another class different from most of the kids I'd had in my class the year before. And after my Disney World experience, that was much more scary to me than the fact that I also had a black teacher for the first time.

One of the first days of school, my mom walked me into the building. Now, we lived several miles away from the school on the far north side of Austin out by the quarries. Most of the kids in my neighborhood rode to school in a carpool and the parents complained all the time about the inconvenience of having to gather a bunch of crazy elementary school kids and deliver them to school -- although I think picking us up was probably worse.

When we walked in one day, there was a folding table set up just inside the building with a posterboard hanging from it. It said "Stop the Busing."

"But I thought we wanted a bus!" I exclaimed to my mom.

She frantically tried to get me to shutup.

"But why? I thought you were tired of taking me to school." I was trying to whisper -- you know, the kind of whisper actors use to reach the back of the theatre, but still feels like a whisper? That type of whisper that seems to be the specialty of every little kid.

Well, my response relaxed the tense parent behind the table. And despite Mom's promise to explain it all to me later, it wasn't until years later that I figured out what busing these parents wanted to stop. And it made me sick. Every student at that elementary school that I can remember was white. We had some latino kids, and we had a couple of kids who got to sit down during the Pledge of Allegience (the whole Under God thing -- don't start, that'll be another post later and you can scream about it then). Of course, we lived in Texas, so there were lots of latinos everywhere. Enough so that I didn't realize that Mexicans (like my best friend who lived down the street from me) were another "race." I didn't realize that some white folk didn't like Mexicans or latinos of any flavor. I thought my friend would be extra-popular because she had a great tan. Unfortunately, I said that in front of Mom and she was horrified and had to explain the whole Mexican "issue" to me.

Two weeks into the school year I was told that there was an opening at the Catholic school and was shuttled off to "shop" for my uniform.

Was it because busing appeared to be imminent? Was it because my teacher was black? Was there really a "sudden" opening at the private school?

And what I didn't understand then or now was this: if we were so religious as to send me to a Catholic school, how Christian was it to be that way to other people? to be so scared of them and for no reason at all?

I don't remember any black kids at the Catholic school. I had a latino teacher, but didn't see any black teachers there.

I asked my Mom once why she didn't want me to be part of busing - either bused to another school or a school where others were bused in.

"Because I knew that someone would tease a kid - a black kid call a white kid something or a white kid call a black kid something - and you would be right there in the middle of it, defending someone. I didn't want you to get hurt."

Well, she probably had a point. I would have been. I didn't understand that type of "teasing" and I always tried to make friends with the underdogs and the kids that no one else would take to. And I never knew when to back down, so I probably would have gotten the heck whupped out of me.

But you know, the deal is that none of this stuff changed how I felt after that smile at Disney World.

Those two events ... the trip to the Hall of Presidents and the sudden turnaround about busing us to school ... shaped my life more than I could have imagined at that age. The two events together solidified something that I had been struggling with for ages ...

I learned that I could not trust my parents.

Now, before someone screams, let me explain that a little bit further. It wasn't just because I realized prejudice was wrong ... it was because I was finally starting to see through some of the mixed messages I was getting from them. Mom would tell me that black people were the same as white, but she'd also lock her car doors if she saw a black person walking along the street. She'd tell me "you can be anything you want to be" and then tell me I couldn't be a cub scout or an indian guide. She'd poke me in church during the scripture on obeying your parents, but then she'd give me direct orders to disobey my father. And, honestly, Dad was giving me the same mixed messages.

At that point, I came to the conclusion that there are good people and bad people in the world and a lot of shades in between ... but you could not figure out which people were to be avoided by how they looked. My father looked like a great businessman in his fancy suits. He looked like Gerald Ford, enough so that in the late seventies, women in the grocery store wouldn't believe him when he said he was not the ex-president. It didn't really matter that he was white or that someone else was black or tan or kind of yellow.

You learned more about people by comparing what they said with what they did ... and, of course, by watching their eyes. And Dad's eyes scared me. Mom's eyes seemed somewhat blank and empty. I began to distance myself from them.

That wound up saving my life.

Well, that and the bookmobile.

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April 3, 2006

(un)Written

I started out this series of posts on Struggles because I saw the movie Jim in Bold at my church a few weeks back. Jim Wheeler was a teenager who ultimately took his own life because he simply couldn't cope with what his life had become. As I was watching the movie, I became struck at the similarities in Jim's life and my own life as a teenager. The most fascinating difference to me, though, was that Jim apparently had a very good home life … his trauma was over the fact that he couldn't really cope with being "teased" about being gay.

For me, it was my home life.

But in both cases, it was a secret we felt compelled to keep, some distant something that was wrong, that made us different from those around us, and was not something to be talked about. And on top of that, it wasn't something we could figure out how to change.

To complicate matters for me, I had those memories that littered my room, things like the episode with the stuffed animals … and then I had these fleeting, ghost-like fears that I could not explain … those things that fear for my safety and the chemical trauma wipe would just not focus into clear images for me. Things in my room, monsters in the closet. (And now maybe you see why one of the early posts in this series was The Closet ? )

I would spend hours locked in my room as a teenager … well, I didn't have a lock, but you know what I mean … listening to records (yeah, remember actual vinyl?), writing the beginnings of novels, sometimes deigning to do my homework. Once in a rare while, I'd go full-blown teenager and yak on the phone for an hour.

Since I didn't have a lock and I was a teenager, I was of course, obsessed with figuring out a way to either lock my door or at least set an alarm on it so that I knew if my parents were spying on me. I developed elaborate booby-traps for my door, but the best was the simplest of these: I balanced an action figure on my doorknob and put something under the doorknob that would make noise when the toy fell.

That was while I was awake. Every night when I went to sleep, I listened for footsteps. I was sure that the "bad guys" (whoever they were) were going to enter the house at any moment and I had to practice "constant vigilance!" if I was going to save the family from these unknown murderers.

I would hear odd noises in the house at night … sometimes overhearing my parents' quiet arguments … sometimes hearing the slap … sometimes … sometimes ….

And then the chemical wipe comes in. Convenient isn't it? Can you see how living with that constantly, this fear of an unknown with so little substantiation that you can trust … how can you ever be certain that your situation, is indeed, "not good"???

I said that I wrote a lot of novel beginnings during this time period. I saved everything (almost everything … I know I destroyed one story … more on that in a bit). I have long recalled that many of these stories were about some kid who acted as detective or cop or something along those lines. I started to call them Hardy Boys stories, but really they weren't anything like my beloved Hardy Boys. First, the main character might have a best friend, but that best friend was certainly more of a Chet, the bumbling "fool" who is simply a kid. The main characters were always highly logical and completely fearless kids.

I dug some of those up the other day, just out of curiosity. And I was stunned by what I found. As it turns out,

    Staring at the blank page before you
    Open up the dirty window
    Let the sun illuminate the words that you could not find
    Reaching for something in the distance
    So close you can almost taste it
    Release your inhibitions
    Feel the rain on your skin
    No one else can feel it for you
    Only you can let it in
    No one else, no one else
    Can speak the words on your lips
    Drench yourself in words unspoken
    Live your life with arms wide open
    Today is where your book begins
    The rest is still unwritten

As it turns out, staring at the elementary school print in the college rule notebook was very illuminating to me. I found multiple stories that had to do with the main character being abducted … being held against his or her will (I write a lot of male protagonists and not too many female ones). I found either outright reference to situations of sexual abuse or very obvious veiled fears of the same.

I found more parallels between that which I suspected happened to me and the stories I wrote.

Only you can let it in … no one else can feel it for you … no one else can speak the words

And of course, the conundrum here is that I've been a storyteller since I was four when I first got an entire nursery school to sit around me while I wove a tale for them.

But what fourth grader writes so consistently about not just abduction, but specific tortures, not the general ones usually thought of at that age? Some general stories, sure … but every story talking about either horrible parents or parents who were dead and the child had to deal with everything alone and abandoned. By sixth grade the stories changed to kids in mental hospitals who couldn't remember what had happened to them.

No one else can speak the words on your lips … drench yourself in words unspoken.

You see, when you live through that kind of trauma, it all gets shoved way back in the back of the darkest closet in your mind.

Open up the dirty window … let the sun illuminate the words that you could not find … reaching for something in the distance … so close you can almost taste it … release your inhibitions.

It's hard to reach back into that closet and pull those things out because they've changed since you shoved them back there. They're like bits of fax paper exposed to heat … you know the blackened paper once held the history but now you can only make out the vague details … like scraps of parchment half crumbled in a clay jar.

And what does any of this have to do with the movie Jim in Bold?

We all, at some point or another, find ourselves treading water in the middle of the ocean, alone and without sight of land. We can give up and drown … we can strike out for land and miss … we can strike out for land and hit Hawaii … or Mexico … or Easter Island. We don't know where we're going and we don't always know where we've been.

Feel the rain on your skin … no one else can feel it for you

But if we don't share what we've been through, if we don't talk about it, write about it, communicate it in some way then we never really find out how similar we are even though our specific circumstance might be very very different.

And if we only dwell in our own indecision and consternation without really feeling the rain on our skin, without digging the parchment from the clay and trying to piece it all together, we crumble and fade away … half lives, half-lived.

The rest is still unwritten.

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March 22, 2006

Back of the Mind

Well, after that last post, I hardly know where to start this one. I suppose I should start with the concept that I left with last time.

    These were the things on the surface. These were the things that I told other kids, other adults about.
    There were other things that I didn't talk about ... in fact, that I pretty much physically could not utter aloud. Or write, when I finally learned to do that.
    There were those things out in my room ... the stuffed animals incident.
    And then, there were things that I sequestered away in my closet, with the door firmly shut.
    So, much later when I found the whole Cub Scouts story funny and an early indicator that I might need to be coming "out of the closet," I laughed. As far as I was concerned, that had been so obvious from such an early age, there was nothing that had ever been hidden.
    A harder closet to come out of was to admit just how bad the abuse had been.

So, I had things happen that even as a kid I thought were probably not good parenting choices, but which weren't technically abuse as far as the books in the library could tell me. If you look at the bare facts, getting rid of a major allergen is good parenting, right? The problem was always in the way things were done. The devil's in the details, I guess.

The things that happened which were truly terrifying, not just to a kid, but to adults as well, those things were harder for me to hold onto. Here's what happens:
When we have a truly stressful and fearful situation, our brain floods with a variety of chemicals. In that mix is cortisol which, to our best scientific knowledge at this time, has the ability to effectively erase details from the brain. Think about a highly stressful and fearful -- a highly traumatic -- event as a type of brain virus which wipes portions of a memory out of our internal hard drives. (This information comes from Dr. Colin Ross' website.) However, it only wipes the details, not the event itself.

What this tends to mean is that we have no concrete details to help prove that something happened, but we're still affected and traumatized by the bits of memory and emotional memory that we do still retain. Think about a Viet Nam veteran who can remember pieces of a particular firefight, but not really remember exactly what happened. Or, think about a victim of a bad car wreck ... sometimes they remember the whole thing, but often they remember very little in terms of concrete details (if, in fact, they recall the wreck at all).

Example, I know someone who drives a truck for a living. A few years ago, he was driving on a country highway and a local decided not to stop at a stop sign ... having the right of way on the highway, my friend was doing 55 or 65. Tried to stop, but of course, it was far far too late. He plowed into the driver's side door on the station wagon and carried the vehicle quite a ways, naturally killing the driver of the other vehicle. Sometimes, he can remember the panic he felt at seeing the other car in the way and knowing there was nothing he could effectivley do to stop the wreck. Most of the time he remembers nothing except being in the ambulance later on.

He knows, both from his own memory banks and from other people what happened. He does not have any clear recollection. He does not have any details.

He, to a certain extent, is lucky. There were witnesses to what happened. It's clear the wreck was not his fault. And, those witnesses and the police investigators can all tell him exactly what happened (if he wants to know those details).

A child who is traumatized sometimes remembers the emotional experience. Sometimes remembers bits and pieces of details. Sometimes they are able to remember the whole thing. Rarely, it seems, do they remember enough concrete detail suitable for prosecution. "Beyond a shadow of a doubt."

Which, of course, lends creedence to the whole false memory syndrome counter-argument to abuse allegations. And that is a very real catch-22 situation. Kids make things up sometimes. Sometimes adults convince kids of things that aren't true. Sometimes no one wants to believe that Mr. and Mrs. GoodCitizen could be that depraved without wearing a neon sign that all the other adults can see.

Why am I going on about that? Because for me, this is the biggest impediment to my believing and accepting those things which happened to me which I never spoke about as a child or a teenager. I have spent my entire adult life and most of my childhood looking to remember "that one detail" which would, finally, concretely, beyond a shadow of a doubt, convince me that "these things" had really happened.

So, I recall those things "left out in my room." I can talk about the stuffed animals. I can talk about the time Dad set the backyard on fire ... on purpose ... to cure me of my fear of fire. Mom telling me that I couldn't run track because of my asthma, but that I should dust the entire house instead. And a slew of other things, some of which were technically abusive, most of which simply rode that line of bad choices.

The things that did more damage are the things that the chemicals have attempted to wipe to the back of my mind where I can't find them.

I started out these posts by talking about the Cub Scout bit for another reason.

I enjoyed trucks, GI Joes, action figures, Star Wars stuff, Matchbox and Hot Wheels, LEGOs, playing in the mud, building forts and playing with the garter snakes and lizards in the backyard from the time I first saw those things. I thought fighter planes were the coolest things ever the first time I saw one.

So, I just want to clear up one very common misconception ... and I'm gonna be real real blunt about it.
I'm not gay because my dad raped me at age 4.
My "gender" was more stereotypically masculine than stereotypically feminine from the very very beginning. Now, even that didn't mean that I would automatically turn out queer. Like I said earlier, there are men who love cooking and shopping and are straight ... there are women who like working with their hands and like wearing make-up and are straight.

I don't know why I'm gay and I don't particuarly care why. It seems like it was a genetic thing to me, but I'm not a scientist, I haven't analyzed my DNA. I do know something about psychology and find my particular case quite difficult to attribute to environment alone.

And, really, I don't want to get into the nature/nurture debate over this anyway. Call it a pre-emptive strike since I've heard it discussed so fervently and so often.

What I really want to talk about ... next time ... is just what it's like to live with memories blurred by trauma, knowing there's no way you'll ever know the "exact truth."

Posted by Red Monkey at 10:15 AM | Comments (5) | Struggles | TrackBack | StumbleUpon Toolbar Stumble

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