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And in my hour of darkness, she is standing right in front of me. 

I miss you, Beth. 

It isn’t fair. It isn’t fair that it’s your birthday and you’re not here. It’s not fair that I’m sitting in the hospital waiting for my ride home and you aren’t here to distract me. 

Nothing prepared me for losing you. Nothing prepared me for the heart drop feeling when I was told. There really are no words for that moment that changed my world forever. 

I’m changing, Beth. I’m growing. I’m writing a memoir. I’m starting to get published. I’m finding answers to my fragile health. 

I want to share with you who I am becoming. I wish that I could have you call me a dork or a dweeb again. To tell me things are going to be okay. 

But the person who told me things would be okay is why I am not okay. I am not okay. I am broken. I am sad. I am lonely. 

And I’m completely lost without you. 

And when the broken hearted people, living in the world agree. There will be an answer, let it be. For though they may be parted there is still a chance that they will see. There will be answer, let it be. Let it be, let it be, let it be, yeah let it be, there will be an answer let it be. Let it be, let it be, let it be, yeah, let it be, whisper words of wisdom let it be.  And when the night is cloudy there is still a light that shines on me, shine until tomorrow, let it be. 
I’m trying, Beth. I’m trying to let it be. I’m trying to stay hopeful and rise out of my hour of darkness. My health is failing. My depression is worsening. I’m spinning wildly out of control.  

I just need you to tell me to let it be. 

Love, Nora. 

PS: the ER sucks, I have a headache, and please tell me freaking ride to get their ass here. Kthanxbai love you. 

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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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it’s hard to say it, time to say it

Every memory of walkin’ out the front door
I found the photo of the friend that I was lookin’ for
It’s hard to say it, time to say it
Good bye, good bye, good bye

 

Six months next week.
Six long, lonely months.
My heart hurts. It’s broken. It’s shattered.
I will never be the same.
Six months later…

I read our text messages and Facebook convos, with her teasing me about coming to visit her.
I read our inside jokes.
I read about the love we shared.
And I’m reminded of how beautiful our friendship was.

Others would tell us – both while she was alive and after she was gone, how evident our friendship was. With the way we interacted and stuff.

But she’s gone.

And I hurt.
Oh, how I hurt.

I have one less Christmas card to mail out. One empty card sitting on my desk.

I have one less person to share my medical angst with.

I have one less person to invite to my not-very-likely-to-happen wedding.

The grief hits at the strangest times. Such as 1:48 am on a Thursday morning.

But this is the time she’d be on. This is the time we’d talk.

And the chat is hauntingly empty.

 

We used to listen to the radio
And sing along with every song we know
We said someday we’d find out how it feels
To sing to more than just a steering wheel

 

(Admin note: I’ll add an image description later. Sorry it’s not up yet. I’m tired and grieving and not up to posting it yet).

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I still can’t believe you’re gone

I carry the things that remind me of you
In loving memory of
The one that was so true
You were as kind as you could be
And even though you’re gone
You still mean the world to me
In Loving Memory – Alter Bridge

Dear Beth,

It’s been four months. Four long, lonely months. And not a day goes by that I don’t miss you. Not a day goes by that I don’t miss you. Nothing happens in my life that I don’t want to tell you about.  There is so much in my life I need to update you on. There are so many things I want your advice on. There are so many funny things I want to share with you. But I can’t. There’s no way to. It’s not happening.

I wish I could tell you how scared I am with my health. That I’m losing weight again. That I’m running fevers. That we don’t know what I can and cannot eat again. I wish I could tell you that once again, I’m covered with random bruises and mystery rashes no one can explain. I wish that I could ask your advice. I wish that I could whine to you with all the IV pokes and blood draws I’ve had yesterday – I know we would have had something witty to say about the last ER trip that took four gosh darn pokes. I wish i could tell you about the good doctors, the bad ones, the nurses who made may stay worth it.

I wish I could tell you how we’re finally getting my home health care slowly lined up. I wish I could tell you how I’m doing something for Halloween for basically the first time. I wish I could tell you the funny things my doctors say, the off the wall things they say. But I can’t. And I never can again.

I wish I could tell you how much fun I’m having in my new video games. I wish I could share all the pumpkin spice related goodies with you – you would be SO HAPPY at all the pumpkin spice stuff this fall. It’s everywhere. But you’re not. You’re not here. You’re not anywhere.

I’m lost without you. You are (not were, are. you always will be) one of my best friends. I need you, Beth, dammit, I need you. I have your wombat I never gave you. I have the stuffed critters you sent me. I was going to send you a jar of cinnamon peanut butter. But none of this happened. And it never will.

I’m angry. I’m bitter. I’m sad. And I love you. I love you so much. I didn’t realize how much I loved you, even though I knew you were one of my closest friends. No one told me how much losing someone you cared so fucking deeply about would sting. I just want you back. But it’s not possible.

I miss you.
One more day
One more time
One more sunset, maybe I’d be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you
One More Day – Diamond Rio

Love you forever,
Nora.

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What No One Tells You About: Grief

Image: Blue text on a white background states “Grief is like the ocean; it comes in waves, ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.”

When you lose someone who means the world to you, when you lose someone who WAS your world, there is so much that happens. And there are the little things and even the BIG things you expect… and then the little and big things you DON’T expect.

No one tells you you never stop opening the chat window. No one tells you you never stop logging on, expecting to see a message. A post on your wall that will make you laugh. It’s gone.

No one tells you you never stop picking up your phone to send a text or a Facebook message.

No one tells you that the words “Let me know if you need anything” literally mean nothing. We don’t know what we need. Sometimes what we need is a message saying “Hey, can I come over?” And sometimes we want someone over. But  it doesn’t mean we necessarily want to talk. Maybe we just want someone so we’re not alone. So we’re not without people. We need people… but sometimes we need people while we’re alone. We need someone to just sit with us, who is there if we suddenly pipe up with something, but who is also just there in the silence.

We need someone who is okay if we sent a frantic text at whatever AM, or a Facebook message. It’s okay if you don’t read or respond, don’t feel you have to. But we need someone to share our pain with.

No one will replace the person we lost. Nothing can ease our pain. I don’t believe that grief ever goes away. Instead, I believe it changes. It grows with us and it becomes a part of us.

I truly believe that people mean the best, but no one tells you how much it fucking HURTS when people say “Oh, I know exactly how you feel.” NO. YOU. DO. NOT. You did NOT have the same relationship I did. You did NOT lose the same friendship I did. We lost the same person and we’ve both lost loved ones, but you have no idea how I feel. You can relate. You can feel similar. But you have no idea exactly how I feel, and those words hurt so much.

What no one tells you is how lonely grief is. That it’s the moments you least expect it is when you are  blindsided by it. That when you’re walking home alone from the grocery store at midnight, it’s when the tears fall. When you’re on the bus and you see something hysterical that you’d text them, it’s when the familiar salty feeling overwhelms you.

Grief is forever. It becomes a part of you. No one tells you that. You expect that in time, you will get better. I don’t believe you do. I believe as you approach your new normal, you change. But grief is the price of love – and it’s worth it, I think. I think that love is the greatest  gift you can give anyone. And in a way, I think the grief and pain is that final gift you can give them. For it means that your relationship meant something – to both you and to them. It means that their life meant something to someone – to MANY someones – to COUNTLESS someones. And that’s what matters. That’s what love is.

 

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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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A Video for Beth

Hello. My name is Nora, and Beth is one of my closest friends.

I am currently overseas on holiday, and so I couldn’t make the memorial.

So I spoke with Matt, and he said I could record a video message to be played.  [looks down, begins fiddling with necklace.]

Beth and I met about nine years ago on a message board we had joined to discuss baby names.

We quickly bonded over a love for baby names, over a love for grammar, even though my grammar in this absolutely sucks because she’s not here to correct it. We bonded over a love for the Beatles, and a capella music, and all things that were just fun and exciting like that. [opens hands, then clasps hands together]

We also bonded a lot over our health issues, both mental and physical, as that’s something we both struggle with.

Beth came to visit me last summer in Minnesota. We had a lot of fun, and that’s where some of my favorite memories of her come because, since we met online, it’s the first time we actually met in person. And so that was really nice that I have those memories and those pictures. [looks off to side]

Beth and I shared a love for the Muppets, so if I was excited about something [opens hands] that she  didn’t even really give a crap about, I could be like, “Woo, Kermit flail!” [waves hands] And she would join with me in my Kermit flailing [waves hands] because that’s the kind of person she was. Even if she honestly didn’t care at all about what I was talking about [smiles], because she loved me and because she was my friend.

She was there for me. In late night pain flares, in late night hospital visits, late night so many things, Beth was always there for me. She was always the person I could text, or facebook, or combination thereof. One memorable month when I was in the hospital, we literally exchanged thousands of text messages.

Beth would often tell me that she didn’t think anyone would miss her if she died. That if she died, everyone’s lives would be easier. And I can tell you that that’s the furthest thing from the truth. I miss her a lot. She’s been constantly on my mind since she died, and she was constantly on my heart even before that. I can say that this world is a darker place without her light shining on it. I can say that this world is not anything like it was before.

Beth truly made my life better, and I am so blessed to have called her a part of my family of choice. Not many people are lucky enough to have someone like that, someone who they truly love, who they can confide in anything, and who they know they’ll literally take their secrets the grave—as Beth did for me, and I’ll return the favor for her.

Beth, I love you, and I miss you, and I really hope that in the afterlife you’re at, you’re finally pain-free, both physical and mental. I hope that you’re enjoying where you are and just know that, [lifts hand to shoulder] to quote a Mercy Me song, if home is where my heart is, then I am out of place, because I am just so lost without you. And I love you. And I miss you. [brings hand down to side]

Matt and Gabriel, know that Beth loves you a lot. Even when she fought with you, even when she was angry with you, her love for you two never changed. She loved you with all her heart and I know without a shadow of a doubt that she still does. I love you guys too, and you know that I’m here if you ever need anything. Thanks.

A very special thanks to Gabriel Arkles, who transcribed this for me so it could be accessible to everyone – those on screen readers, those with no sound on their laptops/tablets, or those with limited bandwidth for videos. THANK YOU SO MUCH.

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Wake me up when September ends

Late June to late July is an emotional clusterfuck.

It’s why I initially scheduled my Aussie trip there so I’d have good memories in the time frame of a hellish month.

But Beth died.
But it’s the one year mark of my father dying.
The two year mark of the back surgery that screwed up my life.
The four year mark of Nick dying.

It’s such a hard month.
It’s such a hard time frame.

Now I have happy and amazing memories from the time frame (which I will blog about and post pictures and stuff about soon, promise!).

But it’s hard.

I’ve cried more recently than I’ve done in the past year. So many tears. So much pain. So much heartache.

So much loss.

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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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And I’ll tell you all about it when I see you again

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

Dear Beth,

I beat a video game I’ve been struggling with. I know the amount of shits you would have given were have been precisely zero, but you would have listened to me and “YAY’D!” with me because you loved me. You still do love me. I still do love you. Nothing will change that.

I’m in Australia. It’s beautiful, Beth. I wish I could share with you the pictures of the cute animals (even the seagulls which I’m pretty sure are demon possessed), the koalas, the wombats…. I told you I’d bring you a stuffed wombat home and you bet damn well I still well. I wish it was a wombat. I wish I could actually mail it to you.

I wish you could see some of my vacation pictures. I can just here your smart ass comments at them. I can hear your voice. I can picture your facial expressions. I can imagine your text message tone. But it’s empty. Horrifyingly empty.

Who am I going to Kermit Flail with? Who am I going to text pictures of the weird shit I see at the mall with? Who am I going to say things like ‘hippos’ and know exactly what I mean? Who is going to be there for me when I’m trapped in the ER?

I would open my mailbox and find random cards.
I would find random crap on my Facebook timeline.
I wound open my phone to see a message from you.

But now we’re gone.
But now you’re gone.
But now my heart is gone.

I’ve lost friends before, Beth. You aren’t the first. You always listened to me talk about Nick and Rachel and my cousin and my grandparents… but now who am I going to talk to about you? Who am I going to turn to when I need someone to fix my grammar?

I need your smart ass comments.
I need YOU.


How can we not talk about family when family’s all that we got?
Everything I went through you were standing there by my side
And now you gon’ be with me for the last ride