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Despite everything, it’s still you

If you know me at all, you know I love video games. One of my favorites is a little game called Undertale. Now, I am going to write this mostly spoiler-free because of the nature of the game. If you want me to info dump spoilers – I will gladly do that in private. But publicly spoiling the game will  have the masses after me because many believe it is best played knowing as little about it as possible. If you haven’t played it, I highly suggest it. It’s available on Steam for Windows, Mac, and Linux. There are also Playstation 4 and Playstation Vita ports of it, with a Nintendo Switch port coming out later this year.

In Undertale, you play as a child traveling through the Underground. A lot of things and stuff happen throughout the game. Toward the end of the game, you look in a mirror and the text displays “It’s you. Despite everything, it’s still you.

That line alone is my most powerful takeaway from the game. I love Undertale and it’s easily in my top ten favorite video games, if not the top five. The music, the general feel of the game, the way you can tweak your playthroughs… it’s a beautiful, fantastic game. But then there’s that line. And for the most part, the line is always there

It’s you.

Despite everything.

It’s still you.

There’s a lot of things that have happened in my life. My health is horrible. I have lived through many awful things. Life hasn’t been easy.

But despite everything, it’s still me.

Things will get bad. Things will be hard. Life is often a struggle. I’ve lost people I dearly loved, like Beth. I’ve lived through abuse. My health will continue to be a hot mess.

But it’s still me.

There’s a lot of things I can’t control. Life often spirals and turns and twists into a hectic mess – sometimes beautiful, sometimes ugly, but it’s life all the same. But despite all the things I can’t control, I’m me. I’m still me. The “me” I am changes and morphs due to my situation – sure. But I am still Nora. I am still me.

Despite everything.

I’ve often said I’m like a bouncy ball – I’m resilient as heck. I get thrown down, I bounce back up. Sometimes I may roll away and sometimes I may need help getting back up, but I still bounce back. And I’m still me when I eventually bounce back.

Despite everything.

The entire world often seems determined to push me down. I make choices – some good, some bad. Some I’m proud of, some I regret. But at the end of the day, when I’m preparing to wind down and look at the future – it’s still me.

And the same goes to you.

The world often sucks. Things are often outright hard. You’ll make decisions that you’ll regret, and you’ll make decisions that you’re proud of. Sometimes you’ll be standing there, firmly telling the world that it’s not your time to move anymore. But yet. At the end of the day.

Despite everything, it’s still you.

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I’ll never delete her number

It’s been over two and a half years now. Two phones later. And her number is still in my phone. Oh, I know it isn’t her number anymore. I’ll never call it, never text it, never use it again. But I just don’t have it in me to delete her number.

It’s a small, tangible way of always carrying her with me. I sometimes wonder why I love so deeply if I am going to grieve so desperately. To go from texting someone thousands of time a month to not texting at all… it’s hard. It’s so incredibly hard. But this way, I always have her with me, everywhere I go.

I occasionally go through the text messages I have backed up to my computer, and I every now and then start going through the Facebook messages that I still need to finish reading. She’s still on my friends list, she’s still very much there in my life. Even though I can’t talk to her, I can’t see her… the option is still there. The words would just fall into a void.

Losing someone so important to me was so incredibly hard. It still is hard. But deleting the number would be a final goodbye I am just not prepared for. And so, I’ll never delete her number. It’ll always be a part of my life, a small piece of a beloved friendship carried with me.

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I have been changed for good

It well may be,
That we will never meet again,
In this lifetime.
So let me say before we part,
So much of me,
Is made of what I learned from you.
You’ll be with me,
Like a hand print on my heart.
And now whatever way our stories end,
I know you have rewritten mine,
By being my friend.

I sometimes hate myself for choosing to love. By loving deeply, I pay the price of grief. I often question if it was worth it. It hurts. It hurts so badly to pay such a significant price for allowing someone in my life.

I tread the waters of love with care, but when I start swimming in it it’s a fiery passion. I delicately choose who I choose to love so deeply, who I choose to immerse myself with because it hurts so much when I bestow my final, never ending gift – my grief.

I’ve lost so many people I cared so fervently for. It never gets easier when someone else is added to the list. But I carry a piece of them with me as I journey on throughout my life. They’re a part of me forever.

And I can say yes, without a shadow of a doubt, it was worth it. Choosing to love, choosing to grieve, choosing to allow people to impact my life so deeply… it was all worth it. It’s worth the years. It’s worth the long nights where I wish I could just have one more text exchange. It’s worth it…because I wouldn’t be who I am today without them.

So for every soul that left this earth… I am grateful I had the chance to love them. I’m grateful I had the chance to allow them to enter my life. And I’m grateful that their legacy lives on in me every time I talk about them. I’ll continue to live a life to do them justice, continue to live a life to make them proud.

All because they changed me for good.

Like a ship blown from it’s mooring,
By a wind off the sea.
Like a sea dropped by a sky bird,
In a distant wood.
Who can say if I’ve been changed for the better,
But because I knew you
I have been changed for good

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It’s been a long day without you, my friend

Two and a half years ago, I lost one of the most important people in my life. Losing Beth was one of the most difficult things that I’ve gone through. It’s been two and a half years and yet I still have found myself picking up my phone to send a text. I still find myself thinking I should share my hospital adventures with here. After all, we bonded through a world of hospital and doctor stories. When I want to talk about baby names,  I find myself thinking “Dang, I should talk to Beth.”

Shortly after Beth died, I read that grief is the price of love. It’s a pretty profound statement, really. By choosing to love, I chose to grieve. By choosing let people in my life, I am ultimately choosing to one day say goodbye in some way, shape, or form. Is it worth it? I think it is.

Beth and I had a pretty incredible, one of a kind friendship. We had so many inside jokes, so many running gags. Some of them I’ve shared with others to keep Beth’s memory alive (the ones that can be somehow explained, I mean) and others will go to my grave as well.

So many days are now longer and darker, simply because I don’t have Beth to share them with. Keep in mind we were exchanging thousands of texts a month, in addition to Facebook convos. The fact she lived in Colorado and I lived in Minnesota didn’t stop a damn thing. The fact that we only hung out in person for one week didn’t change anything. Our friendship was still so natural when we actually met each other.

I didn’t expect to be still reaching for my phone to contact Beth two and a half years later. I didn’t expect my heart to still be broken everything I see anything cinnamon or pumpkin flavored. I didn’t expect to still long to share my hospital adventures. I didn’t expect it to still HURT so much all this time later.

I’ve come to accept that grief doesn’t have a timeline. I’ve come to accept that grief becomes a part of me, a deep part of who I am. And you know what? It doesn’t have to be a bad thing. For my heart-wrenching grief means that Beth is still deeply loved and sorely missed. My grief is my final gift to her. As long as I talk about her, as long I speak her name, her memory still lives on.

 

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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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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.