Monday, January 30, 2012

Survey!Time: I wrote this over a 4 month period *genius*

 Getting to know me, getting to know some about me, getting to like me, getting to hope I like you...

1. When was the last time you were told you were cute?
Since I have a vagina, I get told that every day; it doesn't matter if I am or I'm not: guys say it mostly as a device to lure you in. I've quit falling for it. 
2. When was the last time you were truly, completely happy with your life?
Spring/summer of 2008 was the best time of my life, until it wasn't. I was 19, had a slamming figure (21 inch waist with 42 inch bust), was making the best grades I ever did in college, and -- most especially -- I was in a very good place with my personal relationships. Family, friends, l'amour. All of it was wonderful. And my youngest sister Ellie and my first ever (and only) nephew Aiden were the best babies there ever was. My heart and life were so full of love, and I was so loved, it was like living in a dream of perfectness. But the thing about good dreams: someone always wakes you up from them.
3. When’s the next time you will see the person who absolutely takes your breath away?
I'm never letting anyone have that power over me again. I'm too old, too grumpy, and jaded enough to know that if someone wants you bad enough, you'll take THEIR breath away and they won't stop until you know it.
But in perfect!world, I would be capable of such a girlish sensation and I would have someone who made me that happy in my life. 
4. What are you most looking forward to tomorrow?
Being alive another day. That's supercool. 
5. What is your relationship status?
I'm going to give you a vote of confidence and assume this is obvious. 
6. Do you think you will be in a relationship two months from now?
My last relationship taught me that love isn't enough. And also that when guys get depressed, they assume they have fallen out of love -- in less than a week, because THAT'S possible -- and then leave you feeling like you've been gutted and left for dead in a lonely, rainy alleyway.
Two conditions would have to be met to ever induce me into being in a relationship again. #1) I would have to be really in love and really happy; now that I know what it feels like, I can't go back to less-than. #2) The potential partner would have to assure to me (and preferably prove to me) that they were committed to commitment. That they would talk to me if they have a problem instead of taking unilateral actions that rip my heart out, kill his soul, and make people think we're both fucking lunatics: him for what he did and me for caring that he did it. 
 So, no. I don't think I'll be in a relationship in two months time. 
7. Do you hate anyone at this present moment, if so how many?
I can actually say with all honesty I literally don't hate a single living soul. People like Hitler? I don't think they ever had a soul. People who antagonize me? I think they're so pathetic, I sometimes literally feel sorry for them. Yeah. I actually practice what I preach, suckers. I bet you didn't think I did, but I do. 
8. Would you like to punch anyone?
Definitely. Punching does not go against my moral code/philosophy of life, etc. Punching can actually be very good for the soul. 
9. What is your background on your phone?

I will always love Repo! The Genetic Opera. (And Blind Mag most especially.)
10. Are you a mean person?
No. I'm opinionated and let people know it. There's a difference. In truth, I rarely say things out of meanness and anger. I mainly say negative things as an expression of my disappointment in someone or something. 
11. Is there anything you want to get tattooed on you?
I used to want "amor vincint omnia" (the saying, NOT the painting). I don't jive with that philosophy anymore, though.
12. Would you consider yourself tall?
I consider me 5'5 1/2". The question is: do YOU consider me tall? Because height is all about perspective. My 21-year-old sister thinks I'm really short; my 4-year-old sister thinks I'm super tall.  
13. What’s your relationship with the person you last texted?
I haven't texted in over 24 hours (as my life resides outside of my phone). But it was my step-uncle. And the jerk never texted me back. (I have multiple step-uncles by all sorts of situations imaginable; this one is my step-uncle via his younger sister marrying my older father.)
14. Have you ever had someone pick you up off the ground and carry you?
I will assume we're talking about since I was six. And yes, surprisingly. 
15. This time last year, who did you like?
Myself. And the feeling was mutual.
16. Are you wearing any jewellery?
No. I have six piercings and I usually stupidly let them grow up and have to re-pierce. Myself. Manually. Without those fancy piercing guns, antiseptic, or any of that wimpy shit. (To quote Jerry Trainor, "I phone it in.")
17. Is it possible to be single and happy?
Certainly, temporarily. I mean, I know I am -- temporarily. But let's be honest: humans are social creatures and at the end of the day, no one wants to die alone. It's not pretty when they don't find you until you can be smelled from down the block. And that shit happens. It happened to someone's grandmother I know. 
18. Do you find piercings attractive?
Depends who the piercings are on, where they are at, and why the pierced one got pierced. There's nothing unsexier than doing it just because you thought it was "hardcore". I mean, that's about as unattractive as it gets. 
19. Ever been called names?
I was literally called the "dead lesbian" by several classmates. In person. To my face. They said they thought I was dead and it would've been better if I'd died. And as for the lesbian thing, middle schoolers call anyone gay whether they are or not. I'm not gay, but my good friend was; since she was, well, obviously I was too. Because that's obviously how it works.
20. What’s on your mind?
You, baby. Every night. Especially right now, because it's late and the lights are off. 
21. What’s on your bed right now?
Bed things...
22. Do you like your phone?
Fuck yeah. It calls AND texts. I don't need internet on it. Like, I'm not even being sarcastic. Phones are phones. You only need internet on them if, for some reason, you need portable internet and can't get a portable PC or tablet. But in most cases, no one should NEED internet on their phone. (I'm wise. Listen to me on this matter.)
23. What would you say if somebody told you they hated you?
"I guess that makes you one of those human beings I've been hearing so much about." 
24. Are you one of those people who hate crying in front of others?
I hate crying period. I once went 13 years without crying. (See above post about summer 2008.)
25. Would you date someone taller than you?
Seeing as how I'm not only female, but I'm only average height, that's mainly my only option. (And I actually prefer taller-than-me, believe it or not. Makes me feel all cute and dainty.) 
26.If you could see one person right now, who would it be?
Honestly, my dad: I miss him like crazy. Stupid local NASA not having jobs. *prods government*
And he's the only male adult blood relative I have. (Aside of cousins or grandfathers I don't know.) I get sick of being surrounded by nagging vaginas.
27. Where were you last night?
Where I was. 
28. What is today’s date?
October 28, 2011. See? I know shit. 
29. Who was the last person to call you baby/babe?
Aside of my parents? Probably my ex. Because I would only find it non-condescending in either of those contexts. If some random guy called me babe, I'd probably neuter him. 
30. When you’re at the grocery store do you use the self checkout?
This is Alabama. We don't have those. I didn't even know that shit existed til just now. But I mean, this is Alabama; if that shit DID exist here? People would just steal the groceries and lie and stuff them in their coats/purses, because folks is poor in this fascist Tea Party economy that will become the reality for every other state in America unless Democrats, Socialists, Moderate Republicans and everyone who's not a Tea Party lunatic gets out there and votes. Come on, guys. We don't have to agree with each other's individual politics; we just have to unite against our common enemy. 
31. Anyone crushing on you?
Probably. I'm saying that just because I'm a girl and guys are very much the way I said in #1. 
Here is where I left off and then started writing again four months later. Enjoy.  
32. Has anyone ever sang to you?
The first time I was ever sang to (or at, really) was by a car of Mexicans in the Target parking lot. My mom was all like, "SHE'S THIRTEEN YOU PERVERTS!!!!" They sped off *really* fast. 
33. Has anyone ever given you roses?
No. Not at all.
34. Who do you text the most?
My dad. This is the future, after all. 
35.How do you make your money?
I'm a professional writer. People pay me to write things. It's pretty freaking awesome.
36. First person to text today?
I haven't text'd anyone today. All these months later. 
37. What is your favourite color?
Purple. It is the color of gods and royalty. It is my color. 
38. What color are your eyes?
Green. Slightly greener than emerald green. My dad's are the color of the Grinch's. His mom's are practically the color of limes. These are the only other green-eyed people I know. But, we apparently get progressively deeper in hue. 
39. What is a compliment you receive often?
"You have such pretty eyes." "You should only wear red lipstick." "I like your jugs; can I see them?" (The answer to the last one is no. Unless you discover me at a nude beach, then it's whatever.) 
40. Who was the last person to say they loved you and when?
My mom. Yesterday. My mommy loves me, guys! Unlike most assholes, I'm actually proud of that fact. 
41. Do you like your parents?
I love my parents. Their DNA combined to make me. And I think I'm pretty awesome, so they're at least half-way awesome by default. (Just don't tell them I said that; I have to keep them on their toes.)
42. Do you secretly like someone?
I don't secretly like anyone.
43. Why did your last relationship end?
See my answer to question #6. 
44. Where is the furthest place you’ve traveled?
San Diego, California -- or la Jolla, California, or Los Angeles (whichever is technically farther). And it was wonderful. The air smelled so clean, even in the city. And the wind on the beach at night was so welcoming. And the waves weren't pissing about; they were strong, and cold, and wanted to knock you over like they were testing you to see if you could be one of them. It was amazing. Southern California will always have a place in my heart. One day, hopefully I can go back there, to see my Doublekin. <3
45. Which do you prefer, to eat or sleep?
Sleep. I have lupus. I need my sleep. But I don't really *love* it, ya know? I don't love to eat either. I only do both to sustain me. In fact, I think the reason the steroid weight has been so hard to come off is because sometimes I don't get the required 1200 calories to keep my metabolism working. (I'm doing better about that, though, and have proudly lost 13lbs this month!) 
46. Do you look more like your mum or your dad?
I literally look like an exact blend between them. My hair is a medium brown with both red and blonde highlights (Dad is a redhead, Mom is blonde). My nose is wide like Mom's and long like Dad's (that was unfortunate). I have the Cupid's bow of Dad's upper lip, but the fullness of Mom's lower lip. My eye's are wide and big like my mom's, but have little corners like my dad's. I have the disappearing eyelid of my Dad's Native American side; I have the small chin I got from my mom's family of "little Irish washer women". I look like both of them. And I'm proud of that. Even with my ridiculously huge nose, because only a nose like that could balance out my ridiculously huge lips and eyes. = >D
47. How long does it take you to shower?
I've gotten it down to 15 minutes. But I prefer long showers. 
48. Can you do splits?
Yes, I can. Take that, lupus.
49. Are you flexible?
It asks me this after the above? But yes. I am flexible. I'm also freakishly double-jointed. I scan twist my arm around almost three full times. 
50. Can you speak any other language than English?
With very degrees of fluency: canis est in via (Latin -- and I'm kidding; I know more Latin than any of them). I took French for two years. And I also wrote some papers on the evolution of old English to Middle English to modern English. So, it's safe to say I thoroughly speak English to the more than usual degree. 
51. How many hours of sleep did you get last night?
6 1/2.
52. Do you wear your seatbelt in the car?:
Always. Anyone who doesn't is asking to become a vegetable when the next drunk comes careening down the road. (And don't give me that smartass bullshit about liver lacerations -- it almost never happens. It's practically an urban myth. It mainly happens to people wearing the lap bands over their stomachs like they ain't got good sense.) 
53. Are you scared of flying?
Nope. I've flow on a plane before (see the above trip to various parts of California). I know how the whole thing works. Fear is only two things: ignorance or severe phobia. And I have neither one regarding planes. 
54. What do you sleep in?
Pajamas. What do you you sleep in?
55. Who was the last person you kissed?
I don't kiss and tell. Mainly because I don't kiss and know. (I kid, I kid.) 
56. Do you like funny people or serious people?
Funny people who can be serious when the times call for it. Those are my people. But funny > serious. You have to laugh at life, or else it'll eat your soul. 
57. What jewellery do you wear all the time?
None ALL the time. But I'm a big fan of jewelry. I probably wear necklaces most often. 
58. What do you have planned for tonight?
I'm gonna watch stuff. On TV. Maybe on the iPad or PC if it's Netflix. (My TV is from 2002 -- I can't beam Netflix to it.) 
59. Do you prefer myspace or socialsplash?
I don't even know what socialsplash is, so I'm going to let you infer my answer from that. 
60. Do you have a favourite item of clothing?
That gray marled dress I have, the one with the belt. It makes me feel so Pan Am
61. Do you like messages or comments better?
Depends the nature of the subject.
62. Last movie you saw in theaters?
I don't even remember. It's been that long.
63. Last thing you ate?
64. What was last thing you drank?
Coke. (Which I almost never drink! So yeah. Odd!)
65. Are you happy right now?
No. That's why you gotta see the humor in life. It bridges the gap between the sucky times. Keeps you sane. Or, as sane as a person can be. 
66. What were you doing at midnight last night?
Reading Weeds fanfiction. I'm not kidding.
67. Are you left handed?
I'm ambidextrous. I mainly write with my right hand, but I *can* write with my left. However, I can *only* use the mouse with my left hand. My write hand can barely work it at all. 
68. What was for dinner tonight?
I had a grilled cheese sandwich for dinner last night.
69. What is the last thing you thought about?
What I had for dinner last night. 
70. When is your birthday?
July 28th. (The awesome day, mentioned below.) 

Friday, January 27, 2012

All this stuff actually happened: The 19th Birthday Saga

My nineteenth birthday was an epic. As in, an actual "of Gilgamesh" or "Beowulf", etc. There weren't any monsters or demons -- at least that weren't human. But there was a multi-day celebration, threatened childbirth, stolen melons, and the promise of a new tomorrow.

To really understand this story, we'll have to start at the beginning. No, not the beginning of my life -- that is for the autobiography I'll ask you all to buy in thirty years. No, rather, it's the beginning of another life. Or, the beginning of the beginning of that life. Basically, I'm taking you back to the day I found out I was going to be a big sister for the second time.

March, 2007

I remember my mom looking particularly nice that day, nicer than usual. So, it was only fitting what occurred occurred. I was on the couch at the time, playing my guitar or something -- I forget. I just remember her, standing in the kitchen archway, talking on the house phone. That, in itself, tipped me off. I mean, who calls on the house phone? Even in 2007? 

The phone call she received was to tell her that my dad and his girlfriend were having a baby. This was March. 

I was spare you my reaction at the time. Instead, I will jump ahead a few short months to...

July, 2007

By July, my dad's girlfriend is NINE months pregnant. (You got that math, right?) And my world has changed. My parents are finally divorced and all the sudden, I'm meeting new people, primarily from the world of my soon-to-be-stepmother. 

One person I meet is my soon-to-be-aunt, M. Auntie M (get it?). Aunt M is exactly one year younger than me -- to the very day. This means that, when I would turn 19 on July 28th, she would turn 18. While we got along swimmingly, it was a strain being born on the same day. Who gets which relatives at the family birthday dinners and so forth. But there was something else that we hadn't counted on...

This was our response when my dad and her sister told us, "Girls, the baby is probably gonna be born on your birthday. Isn't that exciting?": 

(I was really into slouchy tops and skinny jeans back then; I thought it hid my 19in waist and made me look fatter. I was a dumbass. And yes, I was the skinny one with the long hair. Now Auntie M is the skinny one with the long hair and I'm the curvy one with short hair and glasses. It's a circle.)

And you can understand our pissed-off-ness right? I mean, we had a reason. We had FINALLY gotten used to the idea of sharing our people on our own birthdays and then there's a fetus threatening to destroy the peace talks, the bridges we've built, all with a simple birth. 

We weren't selfish people. We were teenagers and a lot had been asked of us. You can't look me in the eye and say you wouldn't have acted the exact same. 

July 28, 2007

By my our birthday, my dad had been camped out on his girlfriend's couch. They sat there, waiting for the baby to pop out at any minute, because it could. Technically, she was 2 centimeters already, so it really could've happened. 

But, because he loves me, my dad pried himself away from the waiting-for-birth couch and went out to dinner with me, my mom, my sister who was not a fetus/17, her boyfriend, my dad's side of the family, and my mom's side of the family. See, we adjusted very quickly to being what I like to think of as a mature blended family. No jealousy. No hating. No crazy divorce battles to the death. Just love, respect, and tiramisu...because we were at an Italian restaurant and, of course, one must have tiramisu on one's 19th birthday. 

This dinner marked the beginning of the Carriean Festival where I am not only the center of the attention, but the narrator of the story. 

After bidding adieu to my family, I met with my friends, Ems (who is NOT my friend anymore) and J (who is my very dear friend indeed). Back then, we were the three musketeers, and as people who call themselves that are wont to do, we went out in search for action. 

We didn't find any. 

Instead, we found ourselves going to what was, at the time, the local watering hole. We couldn't drink, but there was music. Good, rockabilly music. And we had an awesome time. Ems told the band it was my birthday, they said "happy birthday", and it was embarrassing, but mostly harmless. 

We pretty much danced the night away...

(This trapeze dress was just another failed attempt for me to hide how skinny I was. It was especially a fail when it shrunk in the wash and barely covered my bum. And here, Ems can be seen wearing the "fake butt" I got her the previous Christmas.) 

...except for one other thing: at the bar on my birthday there, we met some people. Some people, we already knew. Others we did not. One person I had not known previously was B. I'm not the most social of people -- in case you haven't noticed. So, when B informed us that the same band (well, two bands, really, I think) would be playing the next night at a different location, Ems and J enthusiastically agreed that we would see him there. I had no say in this. But, it was cool, because it was my birthday. 

July 29th, 2007

My soon-to-be stepmother still hadn't popped yet, so I felt perfectly confident in going out again that night. To this day, people will say my friends and I had ulterior motives for going to the next gig, to see the same dudes play. But really, and I emphasize this fact: we were invited. By B. 

The 29th was not as docile as the 28th. After all, it was the second day of a weekend long festival celebrating my life, which is no small thing. The 29th, things got wild. Well, wild for me, at the time, anyway. 

It was bloomin' hot that night, but it was muggy. Not long after we arrived, the bottom fell out of the sky. And the venue was small; it couldn't hold everyone at once, so people had to go back and forth, in and out. But I don't think anyone minded. It was the cool, relieving sort of rain shower that only seems to come on a lucky summer's day (or night, as the case may be). It was a renewing rain, a revigorating rain. It was a rain that wiped away the small amount of makeup I'd bothered to put on. And it was fun. 

B introduced us to his friend K. Ems and J were so social, it was great fun for them and me? I took pictures. I didn't hardly know most of the people, but it was just a day I thought I'd like to remember. What I didn't know at the time was, it was a day I really couldn't forget if I wanted to. 

Because Ems was is an idiot. Ems, in her very own lude awakening, decided it'd be awesome if she let people draw whatever the crap they wanted on her bare arms. And when I say, whatever, I mean whatever. She ended up with some nice things, a phone number or two, anarchy symbols, but also not so nice things; some of them, I didn't know what they meant -- but I knew what a swastika was. And she had them ALL OVER HER FUCKING ARM. What made this worse is that blondie is of German decent. And, of course, this made no impact whatsoever on her. She proceeded to keep making friends. 

Meanwhile, J and I became known as the chicks who were friends with Swastika Girl -- and that is NOT something I would ever want to be known by. (J and I actually have much love for the Jewish people and find genocide abhorrent.) 

So, with swastikas all over her dumb white ass, you can imagine the kind of friends she made. There was one in particular that just wouldn't stop following us around, some high school punk I refer to as "Heroin Boy", partially as a homage to a Regina Spektor song, and partially owing to the fact I found out -- months after these events -- the POS was a heroin addict. At the time, I really just thought he simply wasn't right. 

So, things are winding down and everyone's leaving. Ems volunteers me (yes, I had to drive, because I'm the only one who can find shit) to drive Heroin Boy home. I didn't feel too good about this, but, at the same time, I didn't want to be responsible for the stranding of some dopey, seemingly harmless seventeen-year-old boy. 

B and K were older than us and, of course, male. I choose to believe it was those two things that prompted them to offer their services as escorts home. They felt the need to make sure we got there safely, what with the new, unwanted passenger aboard. And THANK GOD K took Heroin Boy in his car, because I just don't think I couldn't handled it. Ems road with them. And, I mean, K had to have nerves of steel to drive those two. Meanwhile, it was me driving J and B in my Corolla -- my vehicle at the time. 

Like that, we caravan'd across the bridge back to the town where me, Ems, and J lived. At first, we stop at Ems house. There, she informs us that the party is just getting started, that Heroin Boy doesn't live on this side of the river, he lives on the other side of the river that he just left. 

We all looked like this: 

(I forgot to mention that the rain had completely soaked us all, but me most especially, rendering my black bra entirely visible through my creme-colored top.)

See, we couldn't really be angry. We lost the right to anger when we didn't properly interrogate the intoxicated idiots that were guiding our journey. It was our own damn fault. 

And disappointment leads to hunger. So, before heading across the river, we caravan'd to McDonald's. 

Back then, going to McDonald's after midnight (and it was about 3am by this point) was an adventure. Back then, McDonald's after midnight was the venue in which people would show off their pimped out rides. We're talking lime-colored cars with some kinda rims, leopard prints seats -- these rides were all kinda pimp'dness you could ever imagine...rims, rims EVERYWHERE. And they would show off these rides by circling the McDonalds, the lane that goes outside and around the drive-thru, making sure everyone sees how awesome their shit is. 

But we were used to this, so we paid little attention. Instead, my attention was drawn to K's car that was in the drive thru line in front of us. K was, once again, forced to carry Ems and Heroin Boy. Heroin Boy was in the backseat. This proved to be a big mistake. Because he did this: 

(Yes, I understand I have no idea what the back of a hatchback -- or any type of car -- looks like. But don't focus on that. Focus on the stupid.)

We're in line at McDonald's and all the sudden, the dumbass sticks his body out the side of the window, faces us, and starts talking to us with the biggest grin on his face. He was just talking away and waving his arms like an excited kid. And we had no idea wtf he was saying because our windows were rolled up. 

But I swear to you, it was the most hilarious shit ever. He had no idea whatsoever that we couldn't hear him. And he was smiling so stupidly. Some of us may have peed a little -- that's how much we were laughing. It was so funny. It is one of the funniest things I have ever seen. My crude drawing doesn't give it justice. 

What was he saying, you ask? Well, apparently, he was professing his love to me. It was so fucked up. 

So, we finally make it back across the river as the fog rolls in, and we drop the kid off at his house...

After he is safely inside, the dudes steal a melon from his front porch. I drive off real fast. I ain't no thief. Even melon thievery goes against my code. However, I don't mind, and encourage others to do it, if it jives with their respective codes -- and it did. 

So, we go back to Ems house, and everyone but me and J thinks it's perfectly safe to eat some weird yellowy watermelon off of some random porch. And they all eat their water melon and me? And, being the old biddies of the bunch, J and I were tired. We kindly bid adieu to our new friends, who helped us drop off some messed up high schooler, we change into our jammies, and I fall asleep on Ems' couch, simply because, despite everything, I didn't want to go home for some reason. 

July 30, 2007
Early in the effin' morning...

My phone is going berserk. And not a little berserk, but a lotta berserk. And I'm groggy and tired, and had a maximum of three hours asleep, but something deep inside of me says "ANSWER YOUR FUCKING PHONE, DIPSHIT." So, I do. 

Me: "Helllooo." 

Mom: "OMG, where are you? Where have you been? Do you know what time it is?"

Me: "I'm 19; I don't have to tell you were I am, and --" 


Me: "Do I have time for a shower?" 

Mom: "Maybe." 

So, I rush home, shower, and throw on a shirt. The shirt I wear is, naturally, the shirt nearest at hand: it was the shirt B had given me the night before, of the band that had been playing. So, with that reminder of events past, I rush to the hospital, drive all the way to the top of the parking deck until I find what is literally the last place. I rush inside and say, "BABY -- I'M THE SISTER. I HAVE NO WORDS. WHERE?!"

Somehow, they understood my request and pointed me in the direction of the labor area. My dad and his girlfriend and her mother were already inside the delivery room. The rest of the family, and some select friends, waited outside the door. 

At first, Auntie M and I contented ourselves to slump down against the sterile wall and mull over the fact that this worked out nicely, that we didn't have to share our birthday with someone else, and the joy that that someone else was coming RIGHT NOW. 

But our excitement was too much. Being eager, happy teenagers, we couldn't settle for sitting on the floor like hospital vagrants; instead, like nosy Nellies, we each pressed an ear to the wooden door that separated us from the birthing process. And all we could hear was screaming. Lots of screaming. Eventually, that screaming was followed by words of comfort. After all, her mom had two kids (her being one of them) and my dad already had two kids. They were old pros at this. It was my soon-to-be-stepmom that was the noob, and, of course, the noob was giving birth. All the screaming was perfectly understandable. Even with an epidural, I imagine pushing something bigger than a football out your lady parts has to be rather...uncomfortable. 

But, finally, Soon-To-Be-Stepmom's screams gave way to a smaller, high-pitched scream, a scream I instantly new belonged to a beautiful baby girl. 

And, in no time at all, this happened: 

(This is what happens to my hair when I let it air dry in hospitals. But, that day, I didn't mind.)
In a way, you can say that my youngest sister is a belated birthday present. Not just for me and Auntie M, but also for Dad, who was born on July 22nd. 

And there you have it, folks. The story of my sister's birth and the saga of my 19th birthday, all rolled up into one long, oddly shaped package. 

P.S. The end of the birth story/19th birthday story is just the beginning of another story: the story of the birth of my nephew, whose impending arrival was announced just two days after that photo was taken. 

Circles never end; the wheel just spins. 

Tuesday, January 3, 2012

Why having lupus is as attractive as voluntarily sticking your hand in a meat grinder

What is lupus?

Lupus is an autoimmune disorder wherein your immune system goes batshit crazy and attacks all your healthy tissue at random, whenever it feels like it. Your immune system has declared war; you are the enemy.

(I took this pic in 2009, before my diagnosis, wondering what the weird rash on my face was. Now I know.)

Why it sucks

Think of your immune system like pawns on a chessboard. A lot of people take them for granted, but they're actually very valuable pieces. They're the main line of defense. And, normally, they can't attack their own sovereigns. But lupus changes the rules. When you have lupus, your pawns decide they CAN attack their sovereigns. They leave the enemy pieces (foreign viruses and bacteria) alone and go after YOU until all you're left with is your king hopping around the board by himself hoping to God he doesn't end up in check. 

That and the fact that you could die at any random time from any number of conditions a person your age simply shouldn't have. I once read that being a lupie (that's what we call ourselves), my chances of having a stroke are six times that of my peers. At the time I read that, I was smoking. Reading it made me smoke more as a faulty coping mechanism. That's hard news to digest. 

What it feels like emotionally

It feels like your body has it out for you. It feels like your body wants to destroy you (and it kinda does). So, any time something ELSE goes wrong (like you get the flu) or you get a complication (whether it be a mild rash or something serious like kidney failure) that's just like adding insult to injury. 

And I used to be this being of the sun. I spent my whole days outside; my skin was like copper, my hair was bronze and gold. I ran wild and free and never wanted to go inside. I was so damn alive and I didn't even know it. 

But now, I can't be in the sun anymore. I live life like a vampire, always in the darkness, in the shadows, never seeing the sun. Now, I'm so white I glow (never would've guessed THAT was possible), my hair has gone dark, and I'm anemic. If I step into the sun, my skin will burn and blister because of lupus. Before lupus became a problem, I literally never had a sunburn. Never. 

And knowing you could die young...that is the worst. Because I almost did die young. When I was 12. My appendix died inside of me and fell off. I developed peritonitis, kidney failure, septic shock, blood poisoning, and the beginnings of respiratory failure. Just one of those problems can kill a person. Septic shock in particular has a low survival rate. To have them all at once and live is almost unheard of. I'm a fucking walking miracle. And I'll never be the same again. 

You know that song "If I Die Young" by The Band Perry? That line in there about the "sharp knife of a short life" -- I don't think I've ever heard it said better. There is no sharper knife than that. 

And it doesn't matter what religion you are or if you're religious at all. You are meant to be here. You're meant to do what you want to in this life. And the threat of it all being cut short -- like a constant gun to your head -- is the worst feeling in the world. 

What it feels like physically

I was told by the doctors and nurses when I was twelve that my near-death experience was the most painful thing I would ever feel in my life. (They were right.) They also said my experience was one of the most painful things that could ever happen to a human being. My experience was literal torture. (After all, acute kidney failure is drowning in your own body. You can't breathe. You can't think.) And I had no painkillers, no nausea meds -- NOTHING. I was literally tortured by butchers until my parents found surgeons who would listen, who had the education and skills to recognize what was wrong with me. I actually was saved by the best pediatric surgical team in the world. Otherwise, I'd be dead. 

On an every day level, it feels like your bones are breaking. Your stomach hurts. You puke way too much. And you're generally treated by doctors who barely understand what's wrong with you. (Lupus is very mysterious. They have no idea what even causes it.) 

And as much as I've gone through. I'm the lucky one. Every day is painful, but I had only one truly bad and dangerous spell. (At least, that I know of.) 

Out there, there are kids younger than me dying of heart attacks and kidney failure because of a disease most people are unaware of. Out there, there are mothers who are literally physically crippled, yet pull themselves together to take care of their children. Out there, a million people aren't getting proper treatment because we just don't know enough about lupus to cure it. 


Toni Braxton, Lady Gaga, and Felicia Day are a few people who have an audience, who've used it to raise lupus awareness. Even when they mention it in passing, celebrities raise so much awareness about it -- I don't think they have any idea. Lupus doesn't have as many celebrity patrons as many other illnesses. Like I said: it's mysterious, but not sexy. 

If we had more patrons (and patronesses), we would have more awareness. More awareness = more funding. More funding = more research. More research = a possible cure. 

I understand you're broke. I'm broke as shit because I can't do the volume of writing (my profession) that I used to do. But there's one thing you can do and that is pass on knowledge. Pass on this blog. Tell someone to read it. You know what Captain Planet says, right? "Knowledge is Power!" Well, yeah...Captain Planet is always right. (And I'm not just saying that because the 90's were my wonder years.) Listen to the captain and...

Spread some knowledge; save a life.