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Those who mourn…

Grief is hard. “Blessed are those who mourn, for they will be comforted.”

Those who mourn…

Grief isn’t ever something you are prepared for. Sometimes someone dying is expected, sometimes it’s very unexpected. But every single time, for me, anyway, it’s a fresh slap in the face. I remember the moments when I found out. The moments my world came crashing down. I remember where I was when I found out that Nick died, that Beth died, that Sarah died. I remember finding out about Rachel and Stephanie and… I remember.

Those who mourn…

I don’t think I ever fully recover from grief. I adapt to my new normal. I learn my new ways of living. Nearly two years later, I still am overwhelmed with cinnamon-flavored or pumpkin-flavored sadness in regards to Beth. When I tried Pepsi Fire? My first thought was “Whoa, Beth would LOVE this” because she loved cinnamon. (It was good, just, uh, don’t chug it. It’s how I imagine the cinnamon challenge to be. Just say no.).

Those who mourn…

I was once told that grief is the price of love. Is it? To love someone so deeply, it continues after they’re gone? To love someone so intently, that your world crashes when they’re gone?

I know logic and intellect. I know that by two years out, logically I should be more recovered. But my heart isn’t ready. I don’t WANT there to be a day where I don’t reach for the phone, you know? I don’t want there to be a day where I don’t think “I wish I could tell Nick this” or “I wish I could tell Beth this.” Six years, two years…no matter how long it’s been, I don’t want things to change. I don’t want to no longer think of them. Because that hurts even more than them not being here.

Moving on is hard. But grief is the cost of love, right? My grief is my final gift. The tears, the agony, the heartbreak… they’re my final gifts to them. And they come from the deepest part of my soul. I can’t think of a better final gift than loving them more fiercely than ever.

Those who mourn…

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But Borrowed Time

Handwritten notes that now bring a tear,
Bittersweet smiles amidst Christmas cheer
Inside jokes that bring mist to my eye,
If only I’d remembered,
Those moments were but borrowed time

Firsts in my life becomes firsts without you,
Left all alone when faced with something new
Smiling and laughing, to merely hide the pain
Wishing I could talk with you just once again
If only I’d remembered,
Our moments were but borrowed time

As I learn to grow and walk on alone,
There are so many things I just wish I had known
More “I love yous” and another late night chat,
In the flash of a second, it changed just like that
If only I’d remembered,
That life is but just borrowed time.

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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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to my father 

To my father,

No one really tell you how to grieve an estranged parent. No one tells you what it’s like when the man who is half the reason you’re alive is dead, but you hadn’t spoken to him for nine years prior. 

Your death was sudden. You were dead for several days before I knew. My exact response was more or less “well, that happened.” For the graveside memorial, I was asked to share my favorite memory of you. I decided that it likely wasn’t best to respond with “the phone call that you kicked the bucket.” I was reminded of the time in tenth grade when I was getting testing done – I was asked to name just one good thing about my dad. I gave him a blank look. I couldn’t. I couldn’t come up with one good thing. 
There are few people the world is better without. Like Anne Frank, I truly believe there is good in everyone. But I can’t find the good in my father. Not when after I moved 750 miles away, I had you banned from my college campus. Not when I was an adult and safe, I lived in fear of you finding my phone number. His death ended those worries…but they still exist. It’s illogical. You’re dead. You’re gone. 

But it’s 6:30 am and I’m awake because I can’t sleep. I’m awake because my mind is plagued of memories of all the stuff you did. I lied for years. I hid the abuse for years. I didn’t tell anyone what you did for me for literally decades. Even though my medical records state that even though I denied those forms of abuse, it was suspected. 

Some days I think there isn’t one good thing about you. But then I remember. 

“Through dangers untold and hardships unnumbered I have fought my way here to the castle beyond the Goblin City to take back the child you have stolen, for my will is as strong as yours and my kingdom as great. You have no power over me!” Labyrinth 

I’m alive (cue “Unbreakable, they alive dammit, it’s a miracle”). I will rise above. You may have torn me down. You may have beat me. You may have raped me. But I’m alive and you are not. I still have time to make something of my life. You have lost the chance.
You lost the chance to see who I became. I became a loyal and compassionate Hufflepuff. I became a fiesty and sarcastic cynic. I’m still an introvert. I never graduated college. But I became an advocate and an activist. I’m becoming the person I needed when I was little. 

Your death sealed the end of our relationship. It’s over. Done. It never was and it is finalized. You are gone. 

Now if only I can convince my brain of what I just wrote. If only I can believe it in my heart. I know I will someday. I just hope someday comes soon. Because, you have no power over me. I have my strong will. I have my friends. I soared over the obstacles. 

Goodbye. 

Your daughter no longer. 

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It’s been 11 months. 

It’s been 11 months since Beth died. 
I just want time to stop. 

I just want the grief to stop. 

I just want the emotions to stop. 

I don’t want it to be one year. 

It’s already been longer that I haven’t talked to her. 

I want to talk to her. 

So badly. 

I want the tears to stop. 

The pain. 

How is this fair?

What happened? 

Why did she have to die?

Why?

I feel so lost without her. 

It hurts. It really really hurts. 

Part of the reason my middle name is now Isabelle is because Isabelle is related to the name Elizabeth. And it’s a way to carry her with me. Forever. 

But why. 

Why did she die. 

I still cry when I see cinnamon or pumpkin spice flavored things. 

I still cry when I see a meme I’d share. 

I still cry when I’m in the hospital alone and my texting buddy is gone. 

I still cry. 

I’m still lonely. 

And I miss her. 

I don’t want it to be my birthday this year. I don’t want to celebrate. I just want to skip from the 23rd to the 27th.  

Because it means two days later will be the one year mark.

And I’m just not ready. 

I close my eyes, and I see your face. If home’s where my heart is, then I’m out of place. 

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To my older self

Dear Annora,

You are ninety years old. Ninety! Right now, you are sitting in a doctor’s office waiting for your lost iPhone to be returned to you. iPhones. Funny, huh? Remember those? Remember how you were attached to it? Remember how lost you felt without it? Seventy-two years ago feels so long ago, and yet so near. You remember the sights and smells from the doctor’s office and the taste of your cherry coke. You remember everything but you can’t remember to tie your shoes. Look down. They’re either tied or slip ons, aren’t they? Sure are. Just like now.

When you were twenty-eight, things were so different. Doctors mocked you. Doctors laughed at you. Nurses tried to kill you. People told you were were faking your illnesses. How does it feel to still have them at ninety? I know you’re alive. You’re alive and kicking ass. How many people have you crutch whacked by now, anyway? How many cats have you had? How many friends have you lost?

Annora, you never outgrow your video game addiction. Have you caught all the Pokemon yet? That’s a pretty admiral life goal, you know. Do you still watch all the Marvel movies? Are you still best friends with Anna? Do you still miss Beth with all your being? How many more friends have you lost? How many anime cons have you been to? How many times has someone told you you’re too old for Sesame Street and Blues Clues and how many death glares have you given?

Oh, sweet Nora. You are still chronically ill. It’s something you will never outgrow. The person you are at 28 is fighting for the person you’ll be at ninety. She is fighting for your rights. She is being the voice for the voiceless. Even though she’s scared shitless, she’s launching herself more and more into being an activist and an advocate. She’s so fucking shy and timid right now, but she isn’t shutting up. You’re ninety now, you likely aren’t being quiet either. People aren’t listening to you in the past because you’re only twenty eight, you’re small for your age, and you’re disabled. But you’re fighting and giving them hell. As Chris Crutcher once told you, you’re kicking the hell out of everything that kicks the hell out of you.

You’ve been published. Your memoir is a New York Times Best Seller (okay, I’m kidding. I’ve not even gotten the first page written at age 28 but dammit it will be published by the time I/we are 30. And people read it. They laughed, they cried, they rejoiced with you.

Nora, your life as an advocate has cost you friends. But you’ve also gained them. You’ve gained the most incredible friends you can imagine.. You’re appalled now that people once thought autism was a character flaw, something to be cured. Things are different now (well, not all things: you still crack “that’s what she said” jokes, much to “kids these days” horror).

But, my precious Nora, you love the life you lived. And the life you are living. You aren’t dead yet.

You’re getting better.

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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.