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I focus on the pain, the only thing that’s real

Image description: a cute little bee wearing a green hat, with the text "Your Illness does not make you a burden."  from the EMM, not Emma facebook page

Image description: a cute little bee wearing a green hat, with the text “Your Illness does not make you a burden.”

The one thing I wish I had know about chronic illness is how utterly hopeless it gets. I have never been a healthy person. I was born with a collapsed lung, so from day one, I was destined to a life of pain and disability. No one’s life comes with a manual or a handbook, but the one thing I wish I had known before watching things gradually getting worse was how hopeless things got. The one thing I wish I knew as I grew into, not grew out of, my disabilities is how incredibly bleak things get. There’s nothing in the world that can prepare you for this life. There’s nothing in the world that can get you ready for how dark things are. No one told me how horrible the depression was that went with chronic illness. No one told me how incredibly HARD it would be.

No one told me there would be days that I would want to die – not because I wanted to commit suicide, not because I had depression, but because it was the only end to the pain I could see. No one told me that there would be days where all my time would be spent crying, making phone calls, and sending emails – trying so desperately to get insurance to cover what I so horribly need. No one told me.

No one told me that I’d struggle with my faith. No one told me that I would see no hope. No light. No love. That I would feel so empty, so hopeless. There’s no words for the overwhelming emptiness and despair when you live in so much pain. When you throw every med at it, and you’re still not better. When a hope is dangled in front of you, like a carrot in front of a horse, but insurance cruelly yanks it away from you.

Image description: A puppy, with the text "You don't have to apologize for your illness. It's not your fault and you haven't done anything wrong."

Image description: A puppy, with the text “You don’t have to apologize for your illness. It’s not your fault and you haven’t done anything wrong.”

No one tells you that you feel at fault. That you feel you did something wrong to deserve this life. That you are a failure for dropping out of college due to medical reasons. No one tells you that some days, you wonder if you had made certain choices or done things differently, you won’t be this way.

No one tells you at first, it seems nice to sleep so much. But what people don’t realize is that it’s one extreme or the other. You sleep all the time, or you don’t sleep at all. They don’t realize that some days, you pee or shower. Literally. They don’t realize that sometimes, you get up the energy to walk to the bathroom, but then have to take a nap on the bathroom floor before you can shower. They don’t tell you that somedays, you walk back to your bedroom but you’re literally too tried to crawl back to bed, so you take a nap on the floor.

They don’t tell you that at first, it seems nice to have all the free time in the world. But you really don’t. Because some days, you’re too sick to move. Too sick to play a video game, too sick to watch a movie, too sick to even pick up your phone. Too sick to do the dishes, so you just throw them away rather then do them because you cannot cope or function.

They don’t tell you how you some days have to decide what food will taste the best coming back up. When you’re so hungry you’re crying, but so sick you can’t eat. There’s nothing that can prepare you for that. There’s nothing that can make you realize this is now your life. They don’t tell you some times you LITERALLY have to choose between one disease and the other to treat, because they don’t play nice together and the meds interact and could literally kill you before the disease does.

Above it all, no one tells you how lonely it is. How isolating. How it feels that no one understands. How it feels to be in so much pain that it hurts to even cry. To think. To be trapped inside your head, your body, your house. And that there is no cure.

But above it all, no one tells you that no cure does not mean there is no hope. No one tells you that because of this pain and suffering, you appreciate things that you never thought you would. Like actually putting on pants. Like actually sitting up. Like being able to sit outside barefoot, and feel the grass between your toes. They don’t tell you that you learn to live and adapt in ways you never thought possible. And that is a beautiful thing.

Note: The pictures came from the EMM, not Emma facebook page. Please click the photos to see her work! ūüôā

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call it torture, call it university

Nine years ago in June, I graduated high school. I was by all means a smart kid despite my dismal SAT scores (I don’t test well due to various learning disorders) and I had high hopes for my future. I graduated with honours – it should have been high honours but one of my teachers didn’t turn his grades in on time so the program only listed me as honours. Anyway.

I always thought that by now, I would be graduated with both my undergraduate and my master degree. I had such BIG PLANS for my life. I was eighteen years old, about to turn nineteen. I had no idea how badly my attempts at college would fail. I had no idea what a nightmare I would make of it all.

I withdrew from college for the final time nearly a year ago and I’ve come to terms that I may¬†never graduate. And it’s HARD. I want so badly, so desperately to go back. I still dream of it. I dream of going back. I dream of graduate school. I dream so badly of becoming something worthwhile and instead, I live at home with my cat. I’m on disability. My live is instead doctors appointments instead of doing SOMETHING with my life. And it scares me that I may never amount to anything. That I will be nothing for the rest of my life.

 

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Jesus loves me, loves me still. Though I’m very weak and ill.

A few years back, I was asked if I thought God created me to be disabled. First off, this is a horribly offensive question. Secondly, it came from a quack chiropractor to whom I promptly gave a piece of my mind. Years have gone on since then. I’ve had three operations. I’ve withdrawn from college. My health has completely fallen apart. And I question it.

Why DID God create me this way? Why AM I so broken? Is there any purpose for the pain? I wonder why he let me be like this. I wonder why I couldn’t have a working body. Why I suffer from an array of disorders. Most of the time, I feel I can accept and own my disabilities. But there are times when I question it. When I question why. When I don’t understand. When the doctors are hunting for answers.

I wish, oh, how I wish that I knew. I don’t know that I fully believe what I find off at Ableist Assmonkey Doctor. I don’t know how¬†I feel about this in general. I don’t know why. But I do believe, that for whatever reason, God created me this way. I don’t know what he’s reasoning is, but I know it’s greater than mine. I don’t know why he thought I was strong enough to handle it, and frankly there are days I don’t know that I am. “God doesn’t give you anything you can’t handle” is 100% bullshit, but that’s another rant for another entry.

I don’t know. I don’t know why. I don’t know how. But what I do know is that His plan is better than mine and His vision is better than mine. In high school and middle school, I was often awarded Faithfulness awards for my steadfast faith. My faith has shaken. My faith has been shattered. But I always come back around. I know that God has a plan that I don’t – even with my disabilities.

And the pain falls like a curtain
On the things I once called certain
And I have to say the words I fear the most
I just don’t know

And the questions without answers
Come and paralyze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must
On this truth that my life has been formed from the dust

God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God

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Homosexuality & Jesus

This is actually a repost from my old blog. But I feel it needs to be said again. ūüôā

A few years ago, I thought that being gay was a sin. I didn’t think that anyone should be gay. I was squicked about by people being trans. I can’t say I’m proud of things I said or things I wrote. But I watched people I care about deeply struggle. I saw how hard it was for them and the way they were treated by something that isn’t their fault. I saw their struggles, and it broke my heart. It changed me. I saw the struggles in their lives, and you know what? It’s not fair.
It’s not fair that because of who they love, they can’t get married. It’s not fair that because of who they love, they can be¬†discriminated¬†against in the workplace. Oh, I know some Americans will say that “Well, I’m a Christian and I get bullied/I get ridiculed/etc”. Know what? It’s not the same. As Christians in the US, we are damn lucky to be living here. Sure, we may get “persecuted”, but we keep using that word. It doesn’t mean what we think it means. Just because our children can’t pray in public schools, doesn’t mean anything bad. Just because they don’t teach creationism, doesn’t mean anything bad. Doesn’t mean we’re some kind of martyr or that everyone is out to get us.
Back when Jesus was on the Earth, he hung out with the undesirables. The tax collectors. The ones that society threw the stink eye to, both proverbially and literally. If he were here today? I imagine He’d be hanging out with the homosexuals. Because my God, my Jesus, is a God of love. He doesn’t condone hate.
I don’t want to make anyone change their views about homosexuality. You may think it’s morally wrong, and you have a right to think that. Your neighbor may think it’s morally right, and they have the right to think that. The person across the street may fall in the gray area between, where maybe it’s okay but certain aspects aren’t. But the heart of the matter is that we live in a country where certain rights are for ALL people: Christian and Atheist, gay and straight, male and female, and every other living person has this promised to them:¬†“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their creator with certain inalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” Thomas Jefferson didn’t write “Oh, but not woman” or “Oh, but not homosexual people.” ALL MEN.
I am a Christian, and I support human rights. I support equality for all. I think that they should have the same rights as any of us, because we live in the “land of the free, and the home of the brave.” It’s not just the people who fit our mold of Christianity, it’s everyone. Everyone. We can’t pick and choose who gets the right to marry, the right to this and the right to that, because that’s not what this country was founded upon.
“Oh, deep in my heart. I do believe… we shall all be free someday.”
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Wrong way on a one way track

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Life has been hard lately. I’ve had to make some heartbreaking choices. I’ve been plagued by “what ifs?” My depression, which was already bad, has gotten worse. I try to tell myself it will get better. I try to tell myself that it will improve. I try to tell myself that it won’t always be this dark and bleak.

But it’s hard. As I take my medication cocktail of Pristiq, Buspar, and Seroquel I find myself wishing I didn’t have to do this. I find thoughts I don’t like dancing in my head. I find myself completely trapped in depression.

And I wonder if there’s an easier path. I wonder if there are choices I could make that may not be right ,but may make it easier. I wonder if there’s a way I will no longer be trapped in the vortex of depression. I find myself just wishing there was an easy way out – but I know it isn’t right. I know it isn’t what I need. But damn, it’s so hard when what’s right and what’s easy are worlds apart.

So tired that I couldn’t even sleep, so many¬†secrets I couldn’t keep. Promise myself I wouldn’t weep, at one more promise I couldn’t keep.

It seems like I’m trapped. I have so much I should be hoping for and dreaming for and looking forward to – but none of it, right now. Right now I’m so completely trapped. And I hate every moment of it. I hate this feeling.

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Here she stands today, in her brilliant shining way

 

So, the year was 2012. I had transferred out of a fairly right wing college the year before and my best friend/roommate was still there. I guess, subconsciously, we decided to go out with a bang. The election the year was the marriage amendment for Minnesota. 

The school was strongly on the Vote Yes side.¬†So, we took matters into our own hands. Northwestern has a rock where students were allowed to paint messages. So we took painted the rock with the HRC logo and took pictures of us with the Vote No: Don’t Limit The Freedom To Marry signs. We were not known for speaking up and we were terrified. We received some backlash – we received some judgement. Not even six hours later, some dickheads painted over it with black spray paint. Not even a new message over it, just completed silenced us.

But our voice was heard. We made our stand.¬†We spoke our voice. Even though we were silenced, I have hope that it gave encouragement to anyone who isn’t perfectly straight. Who doesn’t fit the cookie-cutter mold. I still am very bitter towards my time at that school, for more reasons than just this and Ye Olde Christian College will get blog posts of it’s own about that. But for one of the first times in my life, I let my opinion be known, we spoke out about something we were passionate about.


And it was worth it.

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So when the whole world turns against me and I’m all by myself, and I can’t hear You answer my cries for help. I’ll remember the suffering Your love put You through… and I will go through the darkness if You want me to

I spent three years at a private Christian school. We often won character awards or fruit of the spirit awards. Without fail, I was always the one to win the faithfulness reward. The one who had a steadfast faith. Friends, adults in my life, everyone would comment on how strong and unshakable my faith was.

I am very much a cradle Christian. I was dedicated into the Nazarene church at a very young age. I’ve had a vast amount of Bible knowledge and have kicked ass at Bible trivia since I could read. Back then, I thought my faith couldn’t be shaken. Back then, I thought my faith was the only sure thing in my life.

Lately these days, I find myself becoming disenchanted with the notion of Christianity. And it scares me. I haven’t been to church in over a year.¬†It’s sad and depressing, really. How did my once unshakable faith become so shaken?

And I find myself wondering if God is even wanting of me anymore. If God even desires me. After all, my arms have scars I created myself. I have used food as a way to hurt my body. I’m broken. Physically and emotionally. What could God want to do with me?

It’s hard. I find myself wanting to yell at God and call Him a few select names. I find my health falling apart and no one knowing why. I find my physical and emotional health in shambles.

I find myself questioning how He could be strong enough to fix me. Which is kind of silly if you think about it. Why am I questioning the one who formed me himself? I mean, hello, God sees me even when I’m pooping. If he’s okay with that, why am I so worried that he won’t take me “as is”?

Why do I question if the One who was by my side during every appointment, even if I didn’t feel Him, is strong enough? Why do I question if the One who was strong enough to give up His own, only beloved Son is strong enough to fix me?

There’s a peace I’ve come to know, though my heart and flesh may fail
There’s an anchor for my soul,¬†I can say “it is well”
Jesus has overcome and the grave is overwhelmed
Victory is won, He is risen from the dead
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on Eagle’s wings
Before my God, fall on my knees

The thing is, my heart and flesh will fail. I’ll fall victim to my emotions, to my mortal desires, to my physical health. But there is one thing that won’t fail –¬†Jesus blood never failed me yet, never failed me yet. There’s one thing I know that He loved me so.

I may have failures in life. I may screw up. I may watch every aspect of my health fall to pieces. I may struggle with my faith. But you know what?

It’s all a part of life.

I hear the Saviour say, “thy strength indeed is small
Child of weakness, watch and pray, find in me thine all in all.”
Jesus paid it all, all to Him I owe
Sin had left a crimson stain, He washed it white as snow

Lord, now indeed I find, Thy power and Thine alone
Can change the leaper’s spots and melt the heart of stone
Jesus paid it all, all to Him I owe
Sin had left a crimson stain, He washed it white as snow

And when before the throne, I stand in Him complete
Jesus died my soul to save, my lips still repeat
Jesus paid it all, all to Him I owe
Sin had a left a crimson stain, He washed it white as snow

Oh praise the one who paid my debt!
And raised me up from the dead

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that’s where she lies, broken inside

I tear my heart open, I sew myself shut
My weakness is that I care too much
And my scars remind me that the past is real
I tear my heart open, just to feel 

To say things have been bad lately is an understand. A vast understatement. I am completely trapped by depression. Anxiety. My doctor had me do that PHQ-9 doohickey and my score landed in the severe category, vs the moderate it was before. Things are going poorly.

Everything is falling to shambles. I have so much that needs to be done. Cleaning. Phone calls. Emails. Important grown up stuff but it all falls to the wayside. The physical pain, the emotional pain, everything is too much. Everything hits too hard. I don’t even feel like myself anymore.

And I’m on the verge of failing.
The verge of falling apart.

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By the yard it’s hard, by the inch, what a cinch

When I was a child, I was in Patch the Pirate Club, as well as had a couple Patch the Pirate cassettes. Simply put, Patch the Pirate is a MAJOR NAME in Children’s Christian Music, especially in the fundamentalist Christian sect. Patch aims to teach values, not only of faith, but also of morals and character. I actually know songs about loving broccoli and cleaning my plate, about not being a wiggle worm, and many other things that really call for another blog entry. But there are a few songs that have stuck out with me, so here is the first I’m going to write about. I may write others, I may not.

“When mountains tower ragged and high,
rise to the challenge, look to the sky
Trust in the Lord, and start to climb,
Reach for the goal one step at a time

Little by little, inch by inch
By the yard it’s hard, by the inch what a cinch
Never stare up the stairs but step up the steps
Little by little, inch by inch.”

I think this is a powerful message and absolutely profound in a simple children’s song. When I think of mental illness recovery, be it from depression, an eating disorder, bipolar, borderline personality disorder, self injury… when I think of recovery, so often it IS a mountain towering, ragged and high. It’s overwhelming when we first look at it. But when we step back and take it little by little, inch by inch, it’s so much easier. Recovery doesn’t happen overnight. I don’t know how much longer I’ll be in treatment. Months? Years? It’s unknown at this point in recovery. But I do know I take it little by little.

If it means when my eating disorder is in full force, and all I eat for the day is a sandwich and drink some tea, that’s little by little. Each day, I can add a bit more food, be it a side, be it another sandwich if sandwiches are my current “safe” food, etc. If my depression is in full force and I don’t want to leave the apartment, much less my bed, I can take it little by little. Be it just getting up, taking a shower, and getting dressed. I don’t necessarily have to go DO anything, but taking the step to get up is a progress. And that’s the thing – progress is a process. It’s something we do little by little, inch by inch.

I think that it’s important to know that recovery happens. It’s possible. But sometimes, it’s overwhelming. Sometimes I feel like finding the right medication combination is never going to happen. Sometimes I feel like therapy is going nowhere, sometimes I feel like progress is being made, sometimes I feel like I’m backsliding and for each step I’ve taken, I’ve gone back twelve.

But that’s not the point. The point is I’m trying. The point is I’m living. The point is that every time I make a good life choice, however small, however insignificant it seems at the time, it’s a step toward recovery, even if it’s just an inch, even if it’s not even quite an inch yet.

The point is I’m moving. The point is I’m getting there. The point is, little by little, I’m working my way towards there. I’m “reaching for the goal, one step at a time.” And by taking lots of little steps, maybe one day, I’ll overcome. And yes, I’ll reach that goal one step at a time.

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And we pray that our unity may one day be restored

Christians are becoming divided. We bicker about everything. You are for the marriage amendment, you are against it. You don’t think anyone should take birth control, you are fine for it for medical reasons only, you are all for it. You believe in evolution  you don’t. You are voting for Romney, you are voting for Obama, you aren’t voting at all.

The Marriage Amendment is the big one. It’s ripping apart churches, it’s ripping about colleges, it’s ripping about the body of Christ. Come on, people, is this what being a Christian is TRULY about!? You claim you love God, but then you trash-talk and name-call those who don’t believe what you do. It happens on both sides – neither side is innocent of this. We are all guilty of casting undue judgement calls and being far less than perfect.

It breaks my heart to see my state, to see people I love and care deeply about to bicker and fight for what I believe to be a basic human right – the right to love and the right to marry. I realize that you (general you) may not feel the same way I do, and I can accept that. You may feel that marriage is one man, one woman. I am not here to debate that at this time, nor am I here to try and change your mind.

What I am here with is a broken heart. What I am here with is a plea to remember that while our views may differ, at our core we all love the same God, we all love our friends, we all love our families. I assume as the election season gets closer, the fights will get more heated. The name calling will get more coloured and hurtful, and the body further divided. What good does it do, though? What good does it do we do causing such strife and turmoil within a body of believers? What is the purpose of doing that? To help them see our point? Getting into a heated debate won’t change their minds.

We need to remember that at it’s core, Christian simply boils down to a doctrine of love. While at times we are poor vessels of it and we fail magnificently at demonstrating such love, it is no excuse to instead choose a path of hatred. We need to remember the words of the hymn “And we pray that our unity may one day be restored, and they’ll know we are Christians by our love.” We can restore the unity and we can show love.

Whatever you choose to vote on 6 November 2012 is your choice. It is not my job, my duty, or even my desire to persuade you one way or the other. So no matter what you mark on the ballot: Romney or Obama, for or against the marriage amendment, for or against the voter ID law, or the numerous other issues on the ballot, DO choose to vote in love. DO choose your votes, your choices, out of love, not from hatred. Make your choices based in love, and allow your actions to show forth.