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SMILE

Something I have been told my entire life is “the only disability in life is a bad attitude”. Not in those exact words, though. “Smile! Your face will break!” “You’ve got to keep smiling.” “Keep your chin up!” “Don’t let it get you down!” “It’s just a bump in the road.” “It’s not that big a deal.” “Other people are more disabled than you.”  “She would want you to smile.” “She wouldn’t want you to be sad.”

You know what? Sometimes attitude doesn’t do a thing. I can have the best goddamn attitude I want, but Beth isn’t coming back from the dead. I dearly loved Beth and Beth dearly loved me. I am grieving. To tell someone who is grieving how they should feel, and even further – to use their departed loved one as a tool how to feel, is unintentionally cruel. We know they would want to see us happy. We know they loved us. We know all that. But knowing doesn’t take away the hurt.

Contrary to popular belief, I’m actually a happy-go-lucky, bubbly person despite being shy, autistic, struggling with anxiety, and having depression. I crack jokes at the worst times and I’m the person you will find cracking up for no reason at a funeral. I laugh to cope – I laugh instead of cry which has created some really awkward moments in my life. But I’m also cynical, sarcastic, and scared. But when you tell me my disability is my attitude, you’re implying that my attitude is the problem when you know nothing of my attitude.

You see, when you say “the only disability is a bad attitude”, you are essentially saying if I tried hard enough, I wouldn’t be disabled. That’s not true. I can try as hard as I want, but I will still have metal in my back. I can try as hard as I want and be as perky as ever, but it doesn’t change the fact my immune system is at war. I can happily bonk you on the head when I have a deliberating migraine, if you insist I keep up a good attitude though… but I don’t quite think that’s what you’re going for.

Shocking, each one of us disabled people has our own personality. I know, novel concept eh? But we’re all unique. We all use our attitudes in different ways. And if someone choose to be bitter toward having a disability – that’s okay. If someone chooses to be angry, that’s okay. It doesn’t make them better or worse than anyone else with a disability. It doesn’t mean they’re a “bad crip” or anything.

It seems that just because we have disabilities, we’re expected to be perky and happy for YOUR benefit. Because YOU don’t want to see us suffer. Because our loved ones who have gone before us wouldn’t want to see us suffer. You know what? Life fucking sucks at times. Life fucking isn’t fair. People die too young, people get illnesses ‘too young’, people are born with disability. Life happens.

I will choose to live with my disability with the attitude I see fit. Today, I may be advocate Nora. Tomorrow, I may be educating Nora. Next week, I may be bitter and cynical Nora and in a month, I may be bubbly and cheerful Nora. Just like an able-bodied person, I have feelings and emotions too. Just because parents of disabled children seem to think we should be happy and their children should be joyful, doesn’t mean we have.

Disability isn’t merely overcoming what our disability throws at us.

 

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To go back to where I was would just be wrong

I’ve come a long way from where I used to be. I have changed a lot from the person I once was. And I never want to be who I was again. So many people I know lament the past, and it’s something that’s hard for me to understand. Perhaps because I’ve always been chronically ill. Perhaps because I’m an abuse survivor. Perhaps because I no longer self injure and my eating disorder is in recovery?

I don’t want to go back to where I was. Wearing long sleeves when I didn’t want to to hide the scars. Though now because I’m always cold I still wear long sleeves often, but that’s beside the point. Bargaining with myself in order to eat. It’s not something I want to go back to. I’m living on my own. I’m more confident. More radiant. More independent than I ever thought I’d be. And even though some day, maybe even some day soon, I may have to live into assisted living, I still don’t want to go back to the past.

I mean, sure, I get homesick sometimes. I’m my only family. I have to fend for myself. But I don’t want to go back to Ohio to live. Minnesota is my home now. I can’t even go back to a time I was healthy, because even though I’m sicker now than I ever was as a child, I’ve never truly known healthy.

But I know that I can’t live life in the past. I know that I can’t live life with what ifs. I know that I have to keep going, keep going, keep going. And I know that it will be worth it all.

 

Oh, I’m pressing on
All my distress is going, going, gone
Oh, I’m pressing on, pressing on
And I won’t sit back and take this anymore
‘Cause I’m done that, I’ve got foot out the door
And to go back to where I was would just be wrong,
I’m pressing on

Pressing On – Relient K

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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! 🙂

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give in to love, or live in fear

Image is of me holding up a sign with words written in many colours. The words say "LOVE IS THE MOVEMENT. MY GOD IS LOVE."

Image is of me holding up a sign with words written in many colours. The words say “LOVE IS THE MOVEMENT. MY GOD IS LOVE.”

So, once upon a time (that is, back in high school), I was anti homosexuality. I hate saying that. I feel disgusting saying that. I feel like it’s a part of my life I should hide. That whole “God made Adam and Eve, not Adam and Steve” thing? I thought it was the most clever thing EVER. I thought it was amazing! I thought I was speaking in love when I called people out. I thought I was, you know, being a good little Christian girl and looking out for their souls. I was mistaken. I was wrong. I was cruel. I don’t want to think about the poems I wrote (yes, I wrote anti gay poems. I cringe majorly).

But the thing is, people can change. It doesn’t make it right. It makes it wrong. It doesn’t mean I didn’t hurt people with my words and feelings. I did. I hurt people who are now my friends. I hurt people before I knew them. I was a hateful person, even though I thought I was speaking in love. Even though I thought I was being kind and compassionate. I wasn’t. I was far from it.

What did it take for me to change? I read stories. My heart started breaking. I realized I was using love as a guise, I realized I was using love as a reason to hate. It sounds counterproductive, doesn’t it? That I was using love to fuel hatred? I thought I was being so kind and caring and compassionate. I wasn’t. I was wrong.

I studied the original Greek and Hebrew texts. I prayed. I wept. I talked with friends. I talked with people deeper in the faith than me that I trusted. And I came to realize that using my love to fuel hate was wrong. I came to realize that there was something greater I could do with my so called love – I could rally to make a difference.

Instead of trying to change people for what I thought they were doing wrong, I could pour my energy into making a difference in their lives. I could be a kind, compassionate friend. A listening ear. Someone who wept with them when they were mistreated. Someone who stood up for them when they needed an ally. Someone who was ready and willing to be a voice for them.

It isn’t easy to admit that you’re wrong, you know. It isn’t easy to admit that you were once filled with hate. Am I ashamed of it? Yes, yes I am. But I know now, with all my heart, I am no longer that person. I can love. I can teach. I can learn. Anyone can. People can change and people can mature.

I’m sorry I was a bigoted asshat. I am that way no longer.

Love is love.

Love knows no gender.

Love is for everyone.

And I fully believe, with all my heart, that God feels the same way.

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Your heart will be heard through your unspoken word through generations to come

I woke from a dream last night; I dreamt that you were by my side. Reminding me I still had life in me. I remember you like yesterday, yesterday. I still can’t believe you’re gone. I remember you like yesterday, and until I’m with you, I’ll carry on. Every lament is a love song, yesterday, yesterday, I still can’t believe you’re gone, every lament is a love song, yesterday, yesterday, so long my friend, so long. – Switchfoot, Yesterdays.

It’s hard to believe it’s been four years since the guy who taught me there was a God outside the fundamentalist view of God existed. The guy who’s first profound question to me was “What is your favorite type of cheese?”. The guy who once peed in a cup for me. The guy who saved my life. One of the few who has physically seen me cry, and openly wept with me. Who motivated me to go into the ministry.

I forever regret the fight we had summer of 2010. If only I’d known then what I know now, but I can’t change the past, I guess. But I wish he could have seen the person I became. The girl who decided to become a hospital chaplain. Who had two back surgeries. Who struggled. Struggled. Struggled. But yet, still had her faith. The shaken faith stayed. And it’s thanks to him.

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
-Chris Tomlin, I Will Rise

How fitting now that the song we often had on repeat was I Will Rise by Chris Tomlin. It was even at his memorial service.

I admit the childish, immature side of me is jealous. Jealous that he is finally free of pain, at a younger age than me. Jealous that he gets to meet his saviour, his redeemer, his jesus while I am still here, longing and waiting.

It somehow gets easier, right?

It’s been a long day without you, my friend
And I’ll tell you all about it when I see you again
We’ve come a long way from where we began
Oh, I’ll tell you all about it when I see you again
When I see you again

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if home is where my heart is then i’m out of place

Oh, I thought about You the day that Beth died
And You meant me between my breaking
I know that I still love you God, despite the agony
‘Cause people tell me, they tell me you’re cruel
But if Beth could sing, she’d say it’s not true
‘Cause You’re good
‘Cause He loves us, oh how He loves us
Whoa, how He loves us…

Most people have not heard the third verse of How He Loves – which even before Beth died, I found the most powerful. To those who do not know the story behind this song, pulled from Wikipedia ‘cuz I’m super classy like that:

“McMillan wrote “How He Loves” following the death of his best friend, Stephen Coffey.Coffey was a youth minister for MorningStar Ministries. On November 1, 2002, during a church prayer meeting, Coffey prayed out loud “I’d give my life today if it would shake the youth of the nation.” That very night, he was in a multi-car accident and died of serious injuries.”

So, I changed the name/gender to be about Beth. My faith has been a clusterfuck lately. It’s been a mess. I don’t know that I’d call myself a Christian but I do call myself a Christ-follower. I love God. I know he’s real. Despite the pain.

Despite the grief.
Despite my world crashing down while I’m literally thousands of miles away.
While my heart is somewhere else entirely.

And I find my faith shaken.
Why the hell did someone who had been through so much shit have to die before things could get better?
Why the hell can’t our broken system help people who need it, instead of leaving them to find for themselves?
Why the hell does this shit have to happen?
On what Earth is this fair?

Why did I lose one of the people I love the most on the day love won?
Why is the day that love one for so many, is the day my heart broke?

But.
But I know Beth wouldn’t want my faith to be shaken.
I know she wouldn’t want me to doubt God and wonder what His purpose is in all this,
I know she would have some smart-ass answer, that would make me laugh until I cried.
And then everything would be okay.

I bought her wombat today, though. Oh, how she teased me about bringing her home a wombat. She wanted me to smuggle a real one, you see. Because ANZ security TOTES (my use of totes is intentional because she would rim the hell out of me for using it). So it’s not a real one. Sorry, Beth. But I know, with all my heart, you are getting your wombat nuzzle right now.

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Give in to love, or live in fear

There’s been so much hate circling the Internet lately. Toward the Duggars, toward Caitlyn Jenner, toward people of colour, toward disabled people. Everywhere you turn there’s a new horrifying story on the Web. Why can’t we simply learn to love?

God loves the Duggars. Yes, even Josh Duggar. Yes, what he did to his sisters was awful. Yes, God forgave Josh Duggar – if Josh truly repented before him. But just because God forgave him doesn’t make it okay. Just because God forgave him doesn’t mean that his victims have to act like nothing ever happened. It’s okay to still guard yourself around someone who hurt you, even if God and even if (and that’s a big if) you forgave them. It’s okay to forgive someone, but still never want to see them again.

God loves Caitlyn Jenner. He created her, yes, I said her, perfectly. He loved her when she was Bruce and he loves her now as Caitlyn. She was still created perfect and precious in His sight. God is saddened when people spew hate at anyone. Spewing hate does nothing, my friends.

God loves people of colour. He gave up His son and His son’s life for them. He weeps with them as the police hate them, attack them, for no reason than the colour of their skin. Why are we defending the police officer? If the same police officer had attacked a white boy for the same reason, we would be up in arms. Why does their skin tone automatically change everything?

God loves people with disabilities. We have the sam rights and freedoms as everyone else. We deserve to fly a plane and not risk being escorted off. We deserve to walk down the street and not be turned into someone’s inspiration. We deserve the same life as everyone else.

God loves us all. He doesn’t pick and choose.

So why the hell do we?

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My Jesus, the children, He holds in His eyes

The ones you loved, they let you down,
And I want you to know that I’m sorry
The choices that they made were wrong, you were caught in the middle
And I’m sorry

So when the anger and the pain get the best of you
I know it feels like you’re all alone, but I am feeling it too

‘Cause you’re my little girl, you’re the one that I created
No one in this world  could ever be like you
When you’re crying in the night, all you need to do is call me
And I’ll be there, ’cause you’re my little girl

When you’re looking in the mirror,
I hope you’re liking what you see
Because no matter what you’re feeling,
You’re perfect to me

Cause I’ve seen you as a child, blameless in my sight
Just spend some time with me, and I’ll make everything all right 

‘Cause you’re my little girl, you’re the one that I created
No one in this world  could ever be like you
When you’re crying in the night, all you need to do is call me
And I’ll be there, ’cause you’re my little girl

I know you don’t deserve what you have been through
I know it doesn’t seem fair,
I know there are times when you think you’re alone,
But you’ve got to know that I will be there

Cause you’re my little girl, you’re the one that I created
No one in this world could ever be like you
When you’re crying in the night, all you need to do is call me
And I’ll be there for you, ’cause you’re my little girl

– Go Fish, You’re My Little Girl

With all the news of the Duggars lately, it’s been an abuse survivor’s nightmare. Constant reminders of faith gone wrong. Constant reminders of protectors turned perpetrator. It’s difficult.

But there is a God who still loves the broken. The hurt. The weary. There’s a God is still patient, and a God who is still love. There’s a God who is still there to heal hurts.

There’s still hope. Hope never ran dry. There’s still love, even for the ones who feel unlovable. It’s still there.

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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. 🙂

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.”