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And We Dance

for nicolas.  january the 13, 1990 – july the 25, 2011

moments of childlike joy
the children’s museum, the science museum
and we dance

 

those nights that we shared
with the little princess and scrubs
and we laugh

those moments you saved my life
hours and hours of prayer
and we weep

we had our disagreements and fade
but you always were my friend, nicolas,
and we care

as the waves of time come crashing
and stop crashing far too soon
and i mourn

i long for the day where we reunite
and we can catch up once more
and i wait

together, no longer in pain
together, with our creator
and we dance

oh, i thought about You the day that nick died, and you met between my breaking. i know that i still love You god, despite the agony. cuz people they want to tell me You’re cruel, but if nick could sing he’d say it’s not true ‘cuz you’re good. cuz he loves us, whoah, how he loves us, whoah how he loves us, whoah how he loves…

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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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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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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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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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I kNow a Fighter

Photo on 3-2-15 at 7.58 PM

You held me down, but I got up
Get ready, ’cause I’ve had now
I’ve seen it all, I see it now
I’ve got the eye of the tiger, a fighter,
dancing through the fire
Cause I a champion, and you’re gonna hear me roar
Louder, louder than a lion
‘Cause I am the champion, and you’re gonna hear me roar.

This year’s campaign with the Children’s Tumor foundation is I Know A Fighter. I don’t know life without NF. I was diagnosed at three years old. I’m turning twenty-eight this summer. I’ve known had to say my disorder from that age. Apparently it’s cute to hear a three year old rattle it off.

I’ve never known life without NF. But perhaps someday I will. Perhaps some day I won’t see my doctors yearly , afraid another tumor has grown. Some things cannot be repaired – my dural ectasia cannot be fixed, my vertebrae cannot regrow.

But it doesn’t mean it’s hopeless. It doesn’t mean things won’t ever change. But until then,  I’m a Fighter. Until then, I fight NF. I fight the internal and external signs. And I keep on living.

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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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I wonder what could be so tragic, make you want to take your life

It’s hard to see beyond your pain, when you feel so dead inside. It’s hard to see what you’ve been given, it’s hard to see the hope in life. And I know it’s hard to take what’s happening, and I know life is tough sometimes. And I know it seems like there’s no hope for you, and I know that your life is worth more than you can see. 

This is a Christian song by Seventh Day Slumber. It quite literally saved my life junior year of high school. I didn’t really like the Jesus-y parts as much (and they’re there, trust me) but the second verse and this chorus helped so much. The worst of my high school depression was the 2004-2005 school year. I went from private school to home schooled. I lived with my abusive father. I had very few friends and found solace on message boards. I was in the deepest parts of self injury… most of my pictures from that time frame involve long sleeves. And yet, this song carried me through. This song reminded me that there was hope beyond the horizon. That you know, it’s okay that things suck right now. Sometimes life just sucks and kicks you in the ass. And there’s not a damn thing you can do about it. But at the same time, it’s going to get better. It won’t always be these bleak.

Right now, I’m in the midst of another dark depression. I’ve had a few truly dark times – 11th grade, early 2009, the Great Cymbalta Nightmare, and now. It’s bad. I’ve been playing medication roulette.

Things are bleak. Things are dark. I’m in a battle for my services. I’m in a battle for the things I need to live, to enjoy life, to have quality. It sucks. I wouldn’t wish this nightmare on anybody. And it’s the life I have. It’s the life I’ve been handed. And I don’t know why.

But perhaps one day the new dawn will come. Perhaps I’ll find hope again? Right now, I just don’t know.

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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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This Is Your Life, Are You Who You Want To Be?

This is your life, are you who you want to be?
This is your life, is everything you dreamed that it would be
When the world was younger, and you had everything to lose?

I loved this song in high school. Back then, I said I lived life with no regrets. This is a badly written essay from back then. VERY badly written. Read at your own risk.

This is your life, are you who you want to be? When the world was younger, and you had everything to lose.” These lyrics from the song This Is Your Life by Switchfoot, sum up how I feel about my life. I don’t live with regrets. Yes, there are events in my past that I wish I could just pull out my big pink eraser and wipe clean. So many times I wish that I could simply just snap my fingers, and shout out “DO OVER!” And yet, I can’t. I don’t believe in living life with regrets. The events of my past are the things that shaped me into the young lady I am today.

One of these events happened when I was four years old. Starting when I was three, I was diagnosed with neurofibromatosis, which is a genetic disorder. Neurofibromatosis is distinguished by having at least six café-au-lait marks (round, brownish marks) on the skin, lisch nodules in the eyes, and learning disorders. Often, other more common problems walk hand-in-hand with NF, such as scoliosis. Another “problem” with neurofibromatosis is that there is an increased change of developing tumors anywhere that there is nervous tissue.

So there I was, three years old. They knew that I had a tumor somewhere, they just didn’t know where. Dr. Annemarie Sommers, a genetics doctor at Children’s Hospital in Columbus, Ohio, finally pinpointed the tumor. I had had a urine sample done earlier that week, and she wanted to repeat it. The hormone HCL levels had completely skyrocketed. Dr. Sommers flat out said “this child is NOT leaving this hospital till I find this tumor.” They ran an ultrasound, and found a ganglioneuroblastoma in my left adrenal gland. The adrenal gland (in the words of the renal doctor) is the gray blob that sits on top of the kidney. The ganglioneuroblastoma was the fifth tumor of it’s kind, in the entire world.

And thus begin the chapter of my life that I spent in the hospital. The original plan was to take out the tumor sooner then they did, however, the anesthesiologist refused to touch me. They were afraid that my tumor was a different type, and that when they tried to remove it, the tumor would explode, sweep over my body, and kill me. Because of this, they then had to shut down my endocrine system. I spent a total of two months in the hospital, (one month, then a few weeks home, then another month).

I am extremely fortunate. I never had to have chemotherapy; I never had to have radiation. The tumor wasn’t even the kind they feared it was. On Monday, April 27th, 1992, the tumor was removed. I was so sick and tiny at that time that I was placed in the infant ICU after the surgery. All the nurses were amazed because they weren’t used to have patients that were able to talk back to them. The only reminders I have left of that surgery is the fact I only have one adrenal gland, and the large scar across my stomach that we loving call “Dr. Cooney’s Signature”, after the doctor who removed my tumor.

There are times when I wish I could change my past. I wish I didn’t have to see doctors all the time, and I wish I didn’t have to go through the surgery. However, would I go back and change it if I could? No, I would not. These events have shaped me, and molded me into who I am today. This trying event has taught me such a valuable lesson. Life is fragile. We don’t know what lies around the corner, when I could have another tumor, when I could begin to show worse signs of the disease. I can’t know what tomorrow holds.

There would be certain consequences of undoing this event in my life. If I were to go back and undo it, I don’t think I would fully appreciate life as much as I do today. I wouldn’t be able to know what a precious gift life is. Yes, life has it’s hard days, and yes, I do wish I could change some things. But I would never do it, for I like the person I am today, for I know the person I am is the person I was meant to be.

“This is your life, and today is all you’ve got now, this is your life, and today is all you’ll ever have…” More lyrics from Switchfoot remind us that today is all we have. Yesterday is “dead and over”, and so why should we worry about it? These events have formed me into the person I am, and have melded me into the person I am meant to be. Today is what I have. I don’t have the future, I only have today. And that is why I live each day to the fullest, thankful to be alive, and thankful to be living with no regrets.

 

I am older now. My old blog was called “forgotten regret”, based on the line from Rent: “There’s only us, there’s only this, forget regret or life is yours to miss. No other road, no other way, no day but today.”

These days, I feel “Will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?” is more fitting. Right now, I regret my life. Right now, I regret and wish that I didn’t live in pain every single day of my life. I don’t know what it’s like to be without pain. I don’t know what it’s like to be free from this nightmare – from this pain, from this heartache. I look at my 9 years ago self, who really couldn’t write to save her life, and think she was wise beyond her years.

Because 27 year old Nora regrets. 27 year old Nora wants to change it. 27 year old Nora is sick of the pain, of the anguish, of living life from doctor to doctor, hospital to hospital, playing medication roulette.

And I just want the nightmare to end.