I found a reason for me to change who I used to be

Or: 100 reasons to live, part 3. See part 1 and part 2

20. Neil Patrick Harris. He's cute, my first true celeb crush, he can sing, he and his partner may be the most ADORABLE gay couple ever. Look, NPH doing a scene from RENT, my favourite musical!!!

21. BUNNEHS. LITTLE BABY BUNNEHS.

the bunny, the bunny, whoah I love the bunny, i don't love my mom or my dad just the bunny..

22. Texting. I like texting. Texting is fun. Dead people can't text. 

23. Jimmy Johns.   Yummy sammichs. GF options. Win!

24. "Math, science, history, unraveling the mystery, that all started with a big BANG!" Come on, I'd miss Sheldon. Well, I can't miss anything if I'm dead because I'm not able to miss things. But, you know, I could never joke about sitting in Sheldon's spot. Or making fun of his Trek-ness. And Sheldon is a fun person to joke about. 

25. There's still a lot of video game consoles I need to own. I can't die before completing my mission of having a ton of old skool and new skool consoles, plus another Commodore. 

Iz floppy. And fun to play with. And just flop around. And get awesome looks for owning.

26. I have to defeat the odds and prove I can overcome all this junk. What a story I'll have!

27. Shiny things. I like shiny things. Not just shiny pokemon, but other shiny things! 

28. Sunsets. Sunsets are beautiful, and it's such a calm, peaceful time of evening.

29. The ocean. I've only seen the Atlantic. Gotta see the others! 

This is from one of my trips to Miami

30. Making random happy faces in random places. It's fun and who knows? Maybe some sad person will see the happy face and then smile, right?

Y U B SAD? HAZ HAPPEH! 

this is your life, are you who you want to be?

I'm kind of freaked out at the moment. Okay, let's rephrase that. I'm very freaked out. I very much want to go in the ministry. I want to teach, to reach, to help. But I don't think that Director of Christian Outreach is right. I'm not made to witness to people! I can't do these face to face convos, calling people to faith! I can't help a pregnant woman, because I don't fully believe that abortion is wrong. I can't help a gay person, because I don't know that it's wrong to be gay and I've become more accepting of it over the years.

But how can I be a director of Christian outreach when bringing people into the church freaks me out? I don't want to bring new people in - I want to help the ones who are here. I go into a cold sweat, panic, puke, cry, clam up, and my mind goes blank when I have to do this stuff - even though I know it all logically. I can do it over a messenger. But if i have to do it in person? It's a living hell. I'm not made to do this! I want to teach! I want to read about Mark (my favourite gospel) and make it relatable! I want to play with children! I want to do young adult ministry! (I can't deal with teenagers :P) I don't want to pull new people into the church! I'm fine with helping the broken, Lord knows i want to help those who have been broken be it by the church or by life or both. But I'm not the one to pull them into a relationship with Christ.

I've been struggling with this for awhile. It doesn't help that my eating disorder is out of control, it doesn't help that my pain and depression and ADD are not medicated. (I go to pick up my Remeron  tomorrow). It doesn't help that I'm struggling to pass math. It doesn't help that I'm trying to find an apartment, move off campus, line up doctor's appointments. And at times it feels like I'm doing it all single-handedly. It doesn't help that I feel so stressed out.

It's like I'm playing Pokemon, and I'm up against a trainer who has the attack that's super effective against me. We're down to a grass pokemon and a fire pokemon, and I have no other pokemon left other than my poor Leafeon and they're kicking ass with Rapidash. I can't flee from a trainer battle, and so attack after attack is hurled at me until I faint, until I black out.

Y U PICK ON ME? THAT NO IZ NICE.

Ahem. Anyway, I'm struggling with this. This is my life, is it who I want to be? I try to make the changes to make things better but it's hard. And there are some things I cannot change. I guess it's like the serenity prayer:

"God, grant me the serenity to accept the things I cannot change,

Courage to accept the things I can,

And wisdom to know the difference."

It just seems like such a struggle some days. Every attack is super effective, and wears me down more and more. I just don't know what to do anymore and how to keep pulling through. 

100 Reasons For Living: Part 2

See part 1 here

11. BACON. Bacon is really, really yummy. It smells good, it tastes good, and HEY IT HAS PROTEIN. PROTEIN IS GOOD.

This little piggy will be my breakfast some day....

12. Psychology. I love studying it, I love learning about it, I love putting it into practice. It drives me, it makes my blood run, and it makes me so happy. Dead people can't study psychology.

13. SCRUBS!!

14. Playing on playgrounds. Pretty sure the kiddies would be creeped out if a corpse went down the slide or if a zombie was swinging...

15. I am loved, I am accepted, I am wanted.

16. I have a story to tell and it hasn't been told yet. Maybe I can cheer people up, inspire people ,leave a legacy with my story.

17. I haven't been overseas yet. Gotta be alive to do that. Well, unless someone drops my ashes out of an airplane crossing the Pacific ocean. But that's kind of morbid.

18. I'm still in college! I need a degree!

19. MARIO!! 

20. Dead people can't ride horses and I want to ride horses again. :D

U ride me, plz?

100 Reasons for Living: Part 1

1. Pokemon. After all, dying before I catch them all would just be depressing, now wouldn't it?

That car is kind of badass.

2. Finally getting my drivers license! It may happen this summer!

3. Getting my own apartment for the first time. With an awesome friend.

4. My friends. They would be very sad pandas if I died suddenly. 

Steph says I can't die until I'm in my 90s. 

5. Video game soundtracks. Seriously. They're beautiful.

And she fools all of her friends into thinking she's so strong but she still sleeps with the light on

My bed is soaked with sadness
My sadness has no end has no end
A downward of  spiral of dispair
That I keep falling in 
I need you how, how I need you 
(...)
Your silence is like death to me,
so won't you hear my desperate plea?
-I Need You, The Swift

It's hard some days to get myself out of bed. My alarm goes off, a few swear words slip past my lips, a stuffed animal may fly across the room. I'm not a morning person by nature, never have been. But when you're trapped in depression, when your greatest enemy is that reflection in the mirror, sometimes hauling yourself out of bed is one of the most difficult things of the day.

I suppose I make it sound like I'm drowning in depression. Some days I am. Some days I wonder why I get out of bed when I've barely slept the night before and daytime is the only time I'm able to actually sleep. When I'm running on two to three hours a sleep a night, and a couple hour nap during the day. Why I bother even trying to hope, trying to dream, when it seems like my hopes and dreams and wishes will just be crushed. It's hard.

Living with depression is like fighting a monster every morning. My days and nights are reversed. I just want solace - just some relief from all the pain I'm trapped in. It feels like just doing simple things - hanging out with friends, eating, hauling my butt out of bed, doing the laundry, drain all the effort and energy out of me and I'm left alone with my thoughts.

All I want to do is be free from this demon I battle. I want to be truly happy again, and not a person that I want to hide from. But I don't know how. I don't know how to open up about the past and allow people - friends, therapists, pastors, et al, help me. I don't know how to let people understand and even begin to give me a chance to have hope again.

For as much as I want to hope, dream, laugh, love, and carry on with my life, it scares the everliving shit out of me. All I've known for over a decade is depression. All I've known is bleakness. All I've known is living in fear and terror. And as exhilarating and thrilling the other side might be - it's completely unknown. It's something I've never felt before. What if it's too much? What if I don't like it? What if I taste the other side, and I don't like it at all? What if it hurts? What if I get a sampling of it, and I wind up falling back into depression? Would the relapse be that much worse because I've tasted the other side? Or would it be better once I pull out of the funk again, because I know what the other side is like? 

I get sick of trying various antidepressants. I get sick of feeling like this - I don't WANT to be like this! But how do I attempt something I've never tried, how do I try something I just don't know? How do I even attempt to spread my wings and fly, when every time I've tried to fly I've fallen?

Depression sucks. I'll leave you with Adventures in Depression because that sums it up better than I ever could.

So tired that I couldn't even sleep

December 3, 2004.
3:43 AM Eastern Standard Time

"sometimes, i just want to give up. i just want to scream. and cry. just to avoid the look in people's eyes. just to avoid the look in people's eyes. it's why i hate talking to people, you see the pity in their eyes, not only pity, but concern, but love...

Did I say I hate love? I really don't know. I hate pity. I have having people worried about me, and concerned. And love...it almost scares me. I'm not talking about a boyfriend "oh my gosh you're so cute" love, or a grandmotherly "I want to squish you" love, I mean a more of..compassion? a more of I care about you, Angelique love. and in a way, it does scare me. having people love me. having people care about me. That honestly is a scary thing, because if I screw up, I have people who will be worried about me, because they do care. If I show them how much I'm hurting, I have people who will be worried about me, because they do care.

and it's just...I don't know. I don't even know anything anymore. Well, I know stuff, saying I don't know anything is like saying a fish doesn't know how to swim. and I just want to break down. and let someone hold me, and let me tell them what all has been eating at me. and it just seems...like I can't. like there's a wall.

And I know I've always been one to build up walls. I've built up walls for so long, I don't know if there's anyway to tear them down."
****
I wrote this 7 years ago. I was 17, homeschooled, and still living with my father. This was before all the shit hit the fan.

I wonder the same thing this days about love. And walls. Do I put up walls to protect myself, or do I put them up to protect the ones I love? Do I really love? Love still scares me so much. To allow myself to be loved, and allow myself to love. To be that vulnerable, that open, that free with someone. I don't know that I can allow myself to do that... and it scares me because I almost like my walls. They're not the best for me, but they're safe.

How do I tear down and allow myself to be vulnerable?

I learned it bywatching you.

Tim Hawkins summed up this song with "My son got mad 'cause I worked all the time, he grew up to me a jerk just like me. And the cat's in the cradle and the silver spoon, and some other poetic stuff."

John Mayer sang "Fathers, be good to your daughters. Daughters will love like you do." A powerful PSA from 1980's is "I Learned It By Watching You"



The thing is, children learn from their parents, if they want to admit it or not. Ultimately, in the end, we have the choice to act on what we learned and what we were taught, but it doesn't mean that it lessens the imprint on us.

There was never a time my father was without a bear can in one hand. His breath always smelled like beer, usually Milwaukee's Best. He'd sit in front of the computer, with his bag of potato chips and his beer can, watching the telly.

I learned so much from watching him. I learned how to be a good girl. I learned how to act on and to lead people on into thinking everything is fine. I learned how to play the game that makes people think that life is fine and I learned how to throw up walls. I won't even go into what I learned from my mother.

And then it scares me -
what will I teach my children?

Because a thankful heart is a happy heart

"I give thanks for this day, for the sun in the sky!"

It's Thanksgiving 2011. As I sit in northern Minnesota watching The Big Bang Theory wearing pajamas and mismatched socks and a mug of Nutcracker Sweet tea, I realize that I have so much to be thankful for.

I am thankful for funny TV shows, such as The Big Bang Theory, Scrubs, and How I Met Your Mother. They allow me to laugh and just enjoy things.

I am thankful for friends. Friends are family, too. I am thankful for friends that make sure I am no alone on holidays and that send me random texts throughout the day. I am thankful for random facebook wall posts, random emails, et al.

I am thankful to be alive. After the epic medication fail right after back surgery, after being diagnosed with an eating disorder, after medical test after test, I am grateful to be alive. Even though days are difficult and things like fibromaliga suck, at least my doctors are trying are to give me answers.

I'm thankful for video games! They are fun to play and give me an escape from life. And they let my mind wander and explore things.

I am thankful for gluten free food and that companies are getting better and making gluten free food.

I am thankful for comfy clothes.

I am thankful for my honey dew shampoo that makes me smell awesome.

I am thankful for the Tea Gardens! Mmm, bubble tea.

I am thankful for going to a school where there are disability coordinators who work with me and don't belittle me.

I am also really thankful for a break from school. I was approaching a nervous breakdown and about to totally fall apart from stress. Which would be bad. I don't think exploding and randomly falling apart is generally advised. I am still stressed to high heaven but hopefully the break will give me a chance to breathe.

I like writing out this thankful blog post! ^_^

Halloween, Reformation, and Independence

I find it interesting that my Independence Day falls on Reformation Day. I don't expect all my readers to know the details about it, but here are the basics:

Once upon a time in a land far away, there was a dude named Luther. His teachings radically reformed Christianity, and even formed a denomination (called, you guessed it, Lutheranism! Wow, y'all are a smart lot!). Luther, more or less, decided enough was enough and nailed the 95 Theses to the door of the Schlosskirche, a castle church in Wittenberg in 1517. This sparked the Reformation. That's a very barebones version, and likely not the most historically accurate. I'm not a profound theologian.

It's certainly interesting. This day is also Halloween - grim grinning ghosts, candy, trick or treat, and more. Halloween was banned when I was a kid because, you see, Jesus wouldn't go door to door begging for candy. Clearly.

But when I think of 31.10, my brain goes back to a different place. 31.10.2005. I was 18 years old, and a senior in high school. A few days later I got the rest of my possessions out of my father's apartment, but that was it. It's hard to believe I've been away from him for six years. It's hard to believe where I was when I was 18. I was still cutting at the time. I was deep in depression (understandably! I had faced things that no one ever should, and made decisions that some adults never have to make). My father later sent me emails chastising me for my decisions.

It gets more complicated because this anniversary also marks the shattering of my faith. Up until this point, I was pretty confident in my faith. But when I went to the church for help and assistance with a difficult, painful choice, and was turned away, my heart broke. When they helped him (note: he needed help, he NEEDS help so badly. But he didn't get what he needed and it breaks my heart. I still want nothing more for him to get the help he needs) instead of helping me and literally turned me away, then I got angry and bitter.

This is a song I remember hearing on Christian radio a far amount those days:

She fools all of her friends into thinking she's so strong,
but she still sleeps with the light on
and she acts like it's alright on
As she smiles again
And her mother lies there sick with cancer
And her friends don't understand her
She's a question without answers
Who feels like falling apart
And she knows, she's so much more than worthless
She needs to find a purpose
She wonders what she did to deserve this
And she's calling out to you
This is a call, this is a call out...
This Is A Call - Thousand Foot Krutch

I think this song sums up that time frame well. Replace mother with "grandfather" (who died the summer after I graduated high school) and there you have it.

I don't know anymore. I sometimes wonder if I'll ever recover from what my father did to me. Maybe I will. Maybe I won't. Maybe I will and it will always shape a part of my personality.

But sometimes, oh sometimes, I wish when my insomnia is rampant I could pick up my phone and cry to my Daddy. I wish that I could find a friend to get in a car with and drive home, knock on the door, and shock him by showing up randomly. Oh, how I wish beyond wishing that I had a Daddy. But I NEVER had a Daddy - I had a father. And at times, since I don't speak to either parent, I feel orphaned. It makes for some really awkward moments in class some times. For example: "How did your parents parent you when you were five?" Cue instant panic attack from me trying to avoid thinking about it. We had to do a family survey in adol. psych and thank GOD the prof bailed me out when she took one look at my face and could tell it was distressing me.

Gosh. As much as people say it's boring to be normal, trust me, this is one place where I'd love to be normal. Trust me.

Love in any language, not so spoken here.

I find myself struggling with love. It's such a simple concept, really, but at the same time it's so complex and layered. It's seemingly simple, but also complicated and painful. There are so many Bible verses that speak of love:

"Perfect love casts out all fear. We love because He first loved us." 1 John 4:18-19
"Love is patient, love is kind. It does not envy, it does not post, it is not proud. blah blah blah" 1 Cor.

And so many more. The Beatles sang that "All you need is love." We need love at the core of our being, it's something we all long and crave for.

But the thing is? Love scares the everliving shit out of me. Imagine being a child, and your father never telling you he loved you. Imagine being a child, and the hands that were supposed to love you wound up hurting you. Imagine it. (This is also why I cannot view God as a father and cannot grasp that theological concept, but that is another blog entry all together).

People who know me know I struggle to tell my friends I love them. Sure, I show it in many ways: I send them small gifts, I send them cards, I write out Bible verses on note cards to encourage them, and so on, and so forth. But to actually say the words "I love you" is SO DIFFICULT.

And I think that is where some of my God struggles come into play: I can't grasp the fact that He loves me so. I can't grasp the fact that I am loved by Him. And it's not that I don't want to be Loved by Him, it's that I don't fully understand fatherly love. At all. Again, the father rant is for another blogpost (likely on 31.10, considering that's my independence day)

Love is so much - and something I crave so deeply. Something my soul yearns for, something my spirit desires.

But I don't understand it,
and it scares me to death.

Sometimes you just gotta buckle down

People have often told me they don't understand how I do it.
How I went gluten free on a tight budget.
How I stay in school with all my health problems.
How I function on my own.
How I make ends meet each month.

The thing is I haven't done anything special. I'm not anyone special, I'm just your average 24 year old who loves Sims and Pokemon, anime and manga, the colour orange, monkeys and elephants, you get the picture. And the thing is before I had to do it, I thought I couldn't do it.

The truth is when you find yourself in difficult circumstances, you somehow find the strength to carry on. When you see others in dire places and think "Wow, I could never do that" the truth is when push comes to shove and it's your only option, you just buckle down and do it. It's not easy. It's painful. It sucks. It's difficult.

But I'm not a superhuman because I am where I am now. Because I stay in school with mostly decent grades (adol psych will come up!), because I live on a small budget, because I do so much myself.

Truth is I don't know how I do it, and some days I doubt that I can keep doing it.

Just take eveything down to highway 61

I hate how my theology class is taking over my blog! So, I'm taking a break from that to do some REAL blog writing. After all, we know I love to write. And babble. And ramble. But that's okay, because that's me, and who I am, right?

My friend and I went up north for the weekend. And I realize how much I fully LOVE nature! I love it I love it I love it. I mean, it's hard for me because it's hard to get around, but gosh, I love it. I loved walking around the outside of split rock light house. I loved walking around and seeing Lake Superior. I LOVE BEING OUTSIDE. I love nature. Even though I hate the cold, I love the feeling of the wind whipping my hair around. Being outside just makes me so HAPPY!

Granted, it's difficult with crutches. Walking is painful, and my weak leg makes things difficult, as well as my off kilter sense of balance. But it doesn't make me not enjoy nature any less, it just means I have to enjoy it differently. I can still climb trees with just my arms (I love climbing things!), and I can limp around and enjoy it.

But gosh, nature gives me such a sense of happiness. It doesn't judge me for being depressed, it doesn't judge me for not being as physically nimble as other people. It lets me take my own pace (until it gets too bitterly cold for that, but you know what I mean). It makes me HAPPY!

but I can't have that happiness often, but for those few glimpses I get to grasp of nature,
for those for moments outside,
it's peace. it's happiness.
it's where I'm meant to be.
I'm able to be outside and see lighthouses (I've always loved lighthouses) and think of how the same way the light saves the ship, there's a light shining head for me, that I'm reaching for, yearning for, leaping toward, that's just waiting for me.

And in that same way... maybe hope, love, grace, joy, peace, all these things I yearn for and dream of are waiting for me.
Waiting to accept me.
Waiting for me to just walk out into them.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

-c1987 by Emily Perl Kingsley

Now, I'm not a parent of a child with a disability. I am a child with a disability. I will never walk without pain. I will never walk without a limp that is now corrected with crutches. I will never live a day in my life without pain. It's not the life I saw for myself as a child.

As a child, I dreamed BIG, as all little girls do. I wanted to grow up to be a tractor driving librarian (shut up! it wold be AWESOME! I'd drive a tractor to bring library books to kids stuck on farms!). I'd chase my dreams overseas. I'd sing and laugh and I would have a wonderful life. I had my health problems as a child, but no one knew they'd grow into what they are now. No one knew what I'd be facing now.

But yet, at the same time it offers things that I wouldn't have otherwise. It offers chances I wouldn't have otherwise. If I didn't have these disabilities, I don't think I'd live life the way I do. I know my outlook wouldn't be the same.

There may be nights, like tonight, where I succumb to tears, hot, bitter tears rolling down my cheeks as I lean against the shower. As the grief of losing so much - parents, health, friendships, lives... hits me full force. As I shake and weep, tremble and cry. Alone - with no one to hold me as I cry and no one to tell me it will be okay. I have my breakdowns too.

And I can't say that everything will be okay. I can't say that I wish I was in Italy instead of Holland some days. I can't say that my heart, my spirit, my very flesh doesn't ache, because that would be a lie. But yet... Holland is where I am. And it's where I'm meant to be, for reasons I will never understand or I'm not even sure I want to understand.

And so, I live with what I'm dealt, grateful for it in some strange way.

Reach out and touch faith

I hate how I feel my faith is pulling me every which way. Part of me longs to return to my Nazarene roots. Being born and raised Nazarene, I want to go back to how I was raised, what was familiar, what I know.

Part of me wants to explore Lutheranism, as my new college is Lutheran.

Another part of me pulls towards borderline agnosticism. And another part of me pulls to not believing in anything. Logically, I know faith should boil down to the old hymn:

"What can wash away my sin? Nothing but the blood of Jesus.
What can make me whole again? Nothing but the blood of Jesus.
Oh precious is the flow, that makes me white as snow.
No other fount I know, nothing but the blood of Jesus."

But the other part of me wants to have a strong assurance. I want to subscribe to a certain set of beliefs. I want to belong to a certain denomination, crazy I know, but still.

But this means exploring theology.
This means exploring dogma and doctrine.
This means figuring out what i believe.
And I don't know how to figure this out.

I have several different study Bibles in various translations, I've read the Bible numerous times. I can argue theology, I can spew out Bible verses at the drop of a hat. I did Bible Trivia as a child (and did rather well in the Southwestern Ohio Nazarene District) and know my Bible well.

I struggle with the concept of love. I don't love simply or often, but when I do love I love deeply and I become fierce with my love. My love protects, calms, comforts, teases, enjoys, hangs out... it's a special relationship and bond and I love it. But I am afraid of receiving the love I so rarely give out. And I think that is part of why I struggle with a faith and religion currently - all my book knowledge tells me that there is a God who loves me that deeply and more, and the scared, abused part of me cowers in fear of that love. But yet at the same time I long and crave for that love. The love that I never really felt as a child. The love that I want so badly, but I fear.

At times I want nothing to do with Christianity. I see a religion that spews out hate in the alleged name of Jesus. I see a religion of people who walk the talk, but don't talk the talk or walk the walk. I look at my own life and want to yell at this alleged faith. I look at one of my favorite worship songs from high school:

In the long hour of my sorrow,
through the darkest night of my soul
You surround me, and sustain me
My defender forever more

When hope is lost, I'll call you Saviour.
When pain surrounds, I'll call you Healer.
When silence falls, You'll be the song in my heart

Part of my issues with Christianity were the way I was treated at old school. Please note that I know people who have gone to Old School, and are still there and loved it. I do not intend to bash the place that is, for them, wonderful and healing and a good fit. However, for me, it did a great amount of damage to my faith and even my mental health. Please know that just because Old School wasn't the right fit for me, doesn't mean that it isn't a good school. However, because it was damaging to me means that I will often talk of it. It is not an attempt in libel or slander at the school.

All that stated, I came out of that school damaged. I came out the school a wounded spirit. And I don't know what my faith is. I don't know what I believe. I don't know how to explore it without reopening wounds that I'm not ready to heal. I hate this turmoil that's taken over my soul, and I don't even know how to begin repairing it.

she still sleeps with the light on

"She fools all of her friends into thinking she's so strong,
but she still sleeps with the light on,
and she acts like it's alright on,
as she smiles again...

and he cries but you rarely see him do it
and he loves but he's scared to use it
and he hides behind the music
'cause he likes it that way."

I sometimes wonder about myself. I've gotten so good at putting up walls (I'm reminded of the song "some walls" here.. "But if there's any hope for love at all, some walls must fall).

I've perfected the act of putting up walls. I've perfected the act of acting like I'm fine - smile on face, while inside my heart is breaking. True, the one closest to me generally see through it, but it scares me how GOOD I am at it. I've fooled therapists, doctors, friends, all into thinking I'm fine, even myself at times.

Why do I do this?
It doesn't help anyone.
Not me, not them, not you, not me.

But yet, it's what's comfortable. It's what's safe. It's what I've done for years. It's where I fit - safe inside walls that keep the real me hidden. For I'm afraid if I'm open about my past, people will judge me. Logical Psychology Major Nora says "You stupidface, you'd never tell a client that stuff is their fault. How are you any different?"

But Hurting, Scared Nora says "Of course it's different for you. You were there. You know what happened. You know if you acted different, this wouldn't have happened."

Logical Psychology Nora says "You had no control. People want to know what your childhood was like, not just the glorified version, not just the good parts you tell."
Hurting, Scared Nora cowers at the thought.

And yet, if I had a client who was like me, I'd urge them to be open with their friends, their therapist, the ones they are close to. But since it's myself I'm dealing with... everything is totally different. It doesn't matter, because Hurting, Scared Nora always wins over Psychology Nora.

Really need to work on changing that... but how do you tear down walls that took all those years to build up?

she wishes God would give her some answers and make her feel beautiful

I had back surgery on May 9, 2011. This is what my back looked like before I went into surgery. It was bad. I believe the curve was between 38-40 degrees. The black spot is called a dural ectasia and only occurs in EDS, NF1, and Marfan Syndrome (along with a coupe other rare disorders). There are small fractures in the bones, but you really can'tsee them. what you also cannot see is the way my vertebrae are deterrating. They were also scalloping, which no, does not mean there were fish in my back. My back was in really, really bad shape. The surgery was scheduled for May 9, 2011. Getting everything set up was a nightmare. One professor didn't want to move the final, but she did and I got a B. I got a C+ in another class. I don't know about the third yet. Anywa,y yeah, that' my back before. Before going under was terrifying. They let Rollie,a church pastor come back, along with Susan and Adelaide (who happens to be my favorite three year old girl ever). They talked to me and calmed me down, and I was in good spirits. The hospital also gave me a sweet gown that allowed me to control the tempeature of the gown. Sweet. A heated gown.

Not long after talking to them, th

ey put IDs on Norabear and Zoephent back to the OR with me. They gave me Versed and the last thing I remember is hearing Adelaide giggle. I woke up after the producure with something draining shit from my back, and a cath draining my bladder (

when they took that out a few days later, best feeling ever!). They had my warm, fuzzy blanked that my friend Kim and her daughter Naomi made for me over me, and had nestled Norabear (which kim's daughter Dolly and Millie made) in my arms. My first words were "Where's Susan?"

Now, I bet you're wondering what my back looks like.

It looks like this. There are no screws or hooks in the middle because the vertebre were too thin. I was on high pain meds for a few days, and I'm still on a good dose of them. This is the scar. I'm linking to it because some of you may not want to see it.

http://img.photobucket.com/albums/v16/summerskyz/9bb23e6e.jpg

I still can't do many things, like I can't do my own hair, and I sometimes have torublewith my t-shirts. Walking is uardl but a special friend ordered me a new pair of light weight crutches that I get on Monday.

Six days post op, they took the dressing off, gave me a shower, and allowed me to wear real clothes. I'm told I look pretty good for six days post op:

One of the nurses helped me get dressed, and did my hair for me. And let me tell you, it felt GERAT to be dressed in semi-normal clothes. Friends visited, and they were way too kind to me.

I was released to a nursing home/rehab center on Tuesday. I'm the youngest here by like five decades. They do lots of therapy here to get me back to normal. I'll need a PCA and likely a home health nurse. I'll have friends helping me cook and I'll be in a studio, so if anyone needs to they can stay the night.

For the first time since surgery, I wore jeans today. Since I got taller from surgery.I am no longer tripping over them . Susan helped with my hair and for about 12 days post op I look pretty kick ass:

So that's it. I move to Concordia on Monday, with the help of some friends. I'll get all settled into my apartment, and life will be groovy. Really can't wait to be in my own place! I do need to get a TV off Craigslist or Freecycle so I can hook up my N64 and get a cheap DVD player so if anyone in the area can keep their eyes open on Freecycle and Craigslist that would be great and i'll happily reimburse you.

All that to say, I'm doing better than the doctors expected. I'm still living in pain, but it's getting better. They're trying to control it with the meds the best they can. Which is all I can ask. Hopefully this surgery will change my life, and be the upswing to my health getting better

Peace out!

living with, not dying from disease

We're kinda taking a different spin from Northwestern Issues today, to write about something that's important to me.

Feb 28, 2011 was Rare Diseases day. And it's interesting, you know? I suffer from a variety of "rare diseases." I'm an alleged "medical oddity." But when I look in the mirror, I am no different from you or you or you or you. I have two eyes (albeit one is cut off in that picture. Fail). I have a nose, a mouth, ears, and hair. I smile and I laugh, but I also weep and I cry. My disorders may one day take my life, but that doesn't mean you should be afraid to get to know me.

I may always walk with a limp, even if I don't always have crutches. I may always suffer from back pain, even after back surgery which will allegedly help it (famous last words, Dr. Dude). There is no cure for my three throat problems, just monitoring. Add in all my other array of stuff, and that's my life.

But you see - I am just like anyone else in many ways. I laugh and sing and dance and hope. I weep and cry and grieve and mourn. I have passions and dreams. I love anime and manga, monkeys and armwarmers, RENT and The Princess Bride. Take away my health problems, and I'm still very much me.

I think at times, I tend to let my health issues define me, as much as I try not to. On one hand, I claim to not let them define me and that I am still me beyond them all. But on the other hand... they very much are me. I sometimes can't hang out with friends (and feel like a friend failure) because my health holds me back. I fall behind in class and ask for extra help because my pain flares. I miss on hanging out due to doctor's appointments. Instead of spring break being a time of refreshment, it becomes an ideal time to fill up with doctor's appointments so that I don't have to miss class.

And what I don't get is how people think I'm strong, how I'm brave. How they couldn't do what I do. But you know what? When it's your life, you learn to live and adapt. I don't have a choice if I do it or not. You don't know how I do it? I don't. Some things give. Some things fall to the wayside. Not everything gets done. It's life.

I don't know what the true point of this entry is. Maybe to see what discussion it spurs about disabilities. Maybe to make people think of what it may or may not be like. Or maybe because my poor blog was looking just a tad neglected and needs life again.

In which my life is never boring

During homecoming, I turned to one of my closest friends, Anna, and told her "Anna, my life is never boring." Right after I get out of the car, my friend Sam's friend Dan whom I've never met but is my Facebook friend, walks up to me and says hi. Well, hi, friend of a friend whom I've never met!

I once managed to blow up tuna casserole in the microwave. Don't ask, because I don't know how either.

I once melted a pasta strainer and assaulted rocky road cookies with Ramen Noodles.

I get asked all the time where I'm from. My favorite guesses are South Africa and New York mixed with British. So apparently I'm a British Newyorker? Sweet.

When with a group of friends, I somehow accidentally wound up at a Gay Pride festival.

All this to say, I don't live a boring life. I have this life where things that don't happen to anyone just happen to me. And my most recent story is truly one that could only happen to me.

I am obsessed with a certain anime, and so there's a reason that I always wore my black and white bracelet on my left wrist, to match the character.

Anyhow, it's the last chapel of Fall 2010. Well, the last legit chapel. All that was left was praise chapel (which I hate as it gives me panic attacks) and the children's christmas program (seriously, cutest chapel ever). Jim Johnson, the campus pastor dude, comes up on stage and gives his message. Which is flipping epic, like always.

Well. Due to my crutches and the fact I leave early to chapel, I sit towards the back. I was sitting behind the manager. We were to write out on our papers what we were giving to Jesus in 2011. I wrote all this lovely, profound stuff. It was a good, worshipful moment. And then. Then. What happens?

I take my crutch to stand up, and unbeknowst to me it catches on my bracelet. FAIL. I don't see this happening, so I stand up. Crutch + bracelet = beads fly ever. Random students get pelted with black and white beads. I think a few flew into the manager. There we are. Worship song playing. People all calm and respectful and YAY JESUS in the quiet way. And me? I quickly make my escape as I'm struggling not to burst out laughing. As are the people around me.

So yes, people. What did I give Jesus for 2011? Black and white beads.