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i don’t know what it’s like to not be depressed

I’ve had depression for as long as I can remember. It’s a part of me. It’s all I’ve ever known. I actually don’t know what it’s like not to be depressed. Which is a really weird sentence to type. A lot of people think I’m a chipper, upbeat, happy go lucky person. But the thing is, that’s the facade I use to cope and to get through life.

A victim of child abuse, I learned to put up a facade to keep myself safe. Showing emotion, allowing myself to be vulnerable… letting people in to my deepest, darkest moments? Terrifying. I learned to shut off my emotions and act like everything was okay, because it’s what I needed to survive.

I’d have frequent meltdowns because I didn’t know how to cope going up – as an autistic, depressed, abused child I simply didn’t know what to do with my feelings and they overloaded. As I got older, I learned instead to internalize everything. I act like everything is okay with the world so that I can pretend things are okay. The truth is, they aren’t.

I’ve seen so many people say they wish they could shut off their emotions. I wouldn’t wish this upon anyone. I shut off my emotions because I can’t cope with them, but it’s only a short term fix and eventually blows up in my face when I have to cope with it. Because I’ve spent so long shutting things off and acting like my problems don’t exist, I’m now struggling to come to terms and even talk about things.

I’m fueled by anxiety and depression, a bundle of nervous energy. There’s often so many thoughts and words flying around in my head that I don’t know how to slow down and untangle them. I wish I hadn’t started shutting off my emotions. I wish I had been taught how to cope with things, instead of having to finally learn how decades later.

I literally don’t know what it’s like to be depressed. And it breaks my heart. I don’t know what it’s like to not be this way. So many therapists and doctors have asked me what I thought it would look like not to be depressed, and the hallowing truth is?

I actually have no clue.

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Can you hear the prayer of the children

Y’all. 

What’s happening at our borders isn’t okay. 

Y’all realize Jesus was an illegal immigrant too, right? Y’all realize he was fleeing his death? Y’all realize Jesus wasn’t white?

I don’t give a crap what your feelings about illegal immigration are and I’m not open for that debate here. Ripping children from their mother’s arms is wrong. Caging children like animals is wrong. 

Why the heck are we standing for this? Fellow Christians, why are we letting our dogma of love be fueled by a doctrine of hate?

We have to do something. Jesus wouldn’t be standing for this

so why the heck are we?

Adding lyrics from a favorite choral piece, as I feel it’s quite fitting. 

“Can you feel the heart of the children

Aching for home, for something of their very own?

Reaching hands, with nothing to hold on to

But hope for a better day, a better day

Crying, “Jesus, help me

To feel the love again in my own land;

But if unknown roads lead away from home

Give me loving arms, away from harm.”

Can you hear the voice of the children

Softly pleading for silence in a shattered world?

Angry guns preach a gospel full of hate

Blood of the innocent on their hands

Crying, “Jesus, help me

To feel the sun again upon my face;

For when darkness clears I know you’re near

Bringing peace again.”

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This year, I’m tired.

I keep trying to write something for “Autism Awareness Day”, or what my fellow autistics are trying to change into “Autism Acceptance Day”. I’m trying to write something articulate, something profound, something that will challenge people and make them think. I have so many words circling around in my head, but trying to get them to my keyboard is hard.

I feel like the things I say are controversial, and they shouldn’t be. It shouldn’t be controversial to say don’t abuse us, and yet it is. In the past week, I’ve read grizzly stories about abuse toward autistic children (I am not sharing the details. They’re unnecessary. But suffice it to say they’re horrific). I’m tired of defending children’s right to exist.

I’m tired. I am so tired, and I am so worn out. Advocacy is my passion, activism is what gets me pumped. I’m tired of having to fight for my right to exist. I’m tired of telling people that their awareness campaigns are acutely harmful. I won’t stop – it’s impossible to shut me up, but dammit, I’m completely worn out.

And so. This year I’m asking for compassion. For understanding when my words jumble. For supporting when I burn out . 

All I’m asking is for you to listen to our voices. All I’m asking is for you to amplify our voices. We’re telling you what we need. We need acceptance, not awareness.  We need you to help us fight against rampant ableism, because we’ve been doing it for years and we’re ALL TIRED. Because we’re autistic, we’re silenced. And that’s not okay.

This year

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and here’s my broken hallejuah

I am a broken Christian.

I love recklessly and live passionately. I have trauma from an experience that shattered my faith in the church when I was young. Social justice is important to me.

I am disabled. I’ve struggled to reconcile this and my faith. I straddle the border of traditional and contemporary – I often say that I’m theologically conservative but socially and ethically liberal.

I have entire episodes of Veggie Tales committed to memory. I make references to obscure Christian niches often.

I am a broken Christian.

I’m a flawed person – I’ve hurt people and I’ve been hurt. I studied to go into ministry – the running joke is I’m most likely to drop the F bomb behind the pulpit. I’ve often been asked to explain theology in ways non Christians can understand.

My faith is important to me. I once used my faith to fuel my hate, but I now use my faith to fuel my love. My thoughts and prayers are important, but they’ve got to be channeled into action and advocacy.

I don’t trust easy. I hide many of my emotions. I’ve got many parts of the charade down.

I am a broken Christian.

I’m just now learning to be safe in a church again. The church hurt me. I’ll never be the Christian I was before that trauma. But. I’m learning to trust people again. I’m learning and growing and changing.

I’m a broken Christian.

But we have a God who calls the broken. We have a God who calls the ones who have been hurt, to help others not to be hurt. We have a God loves the ones who the world does not.

And so I’ll sing my broken hallelujah.

 

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The concept of okay

As someone with psychiatric disabilities, something I’ve been asked a lot is “Nora, are you okay?” That is such a loaded question. Like, how do I define okay? What is okay? When am I not okay? How do I know if I’m okay or not? Are there levels of okay? What if what is okay one day is not okay another day?

I am so used to saying I’m fine, to saying I’m okay, to saying everything is awesome when in reality, it’s not. It’s hard – like, I may not be in acute crisis, but I also may not be okay, you know? Dealing with my brain, dealing with depression, dealing with anxiety… it’s just so hard sometimes.

What is okay?

What is fine?

How do I learn to define these things? I mean, it isn’t like my okay would be my best friend’s okay because okay is so relative.

And why are we so quick to jump to these things that are so abstract and near impossible to define? When okay can be fluid? When okay is literally impossible for me to define?

I don’t know if I’m okay. I don’t know if I’m fine. I don’t know what those words mean in context of my mental health. And I don’t know that that’s necessarily a bad thing?

There’s so many layers and feelings wrapped up inside the word okay. I’m a constant ball of anxiety, fueled by depression. I always feel like I’m teetering on a dangerous balance beam and the smallest little stub of the toe can send my entire world collapsing. There’s so many variables that are essential to my world being survivable – and when they’re not things quickly pile up.

I hate the weight of the word okay. I hate that I feel I have to be okay. I hate that I feel I have to have all my crap together and know what these things mean. Right now, I’m existing. I’m surviving. It’s what I am doing right now. It may not be okay, it may not be fine, but it’s where I am at this point in my life and that alone is enough.

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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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That’s where my demons hide

We all battle our own demons. We all have our own fights, our own struggles, our own turmoil. And lately? Honestly? Things have been really hard. It’s hard for me to admit I’m not okay, it’s hard for me to admit things aren’t easily. I’m able to talk openly and candidly about my physical health. Talking about being autistic? That’s easy, too. But when it comes to my psychiatric disabilities, talking about the alphabet soup in my brain… that’s so much harder. I can allude to things and I can say things here and there, but being truly open and candid is hard as hell.

It’s becoming a problem in my day-to-day life. You see, my method of dealing with my emotions and feelings is the “fuck everything and run” method. I stuff my feelings down; I pretend my emotions don’t exist. While there is a time and place for that way of coping, it currently isn’t a good strategy. It winds up in things getting worse, spiraling more and more, etc.

And so here I am, being vulnerable. Admitting that right now? Things are hard. Things suck. Depression is kicking my ass, and I’m struggling to talk about it and the reasons why. Anxiety is consuming me. I feel trapped. I feel stuck. I’m afraid to be open. Why? The reasons are likely bullshit. It’s just my brain playing tricks on me. But I’m terrified to let people – even the ones I care about and the ones who care about me the most – in. I’m afraid of being judged, I’m afraid of being weird.

I hate that I feel I have to hide my demons. I hate that I feel I have to keep my struggles silent. I hate that so often, I try to downplay my mental health and not admit how things really are going.

If you feel like this, if you can relate to me, you’re not alone. People care, and people want to help. The thing is… we have to let them. I know, “Nora, you’re telling me to let people help when you’re admitting it’s hard for yourself!”

Well, yeah. It is hard for myself. But it’s something I’m learning that is okay to do, trying to get better at, and truly allow people to help me.

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As long as I live…

Countless times on the Internet, there’s been a meme of Trump mocking reporter Serge Kovaleski with the caption “As long as I live, I will never understand how this wasn’t the end of it.

First of all, every single time I’ve seen the meme, Kovaleski is just referred to as “disabled reporter” and his name is rarely, if ever, mentioned. This right there speaks volumes about how disabled people are treated in society. How many of us know his name? How many of us know anything about him, outside of “disabled reporter?” (I am not perfect myself, and I didn’t know more until I did the research).

I am a disabled adult. I have both acquired disability and disability from birth. Every single day, disabled people fight against a culture of ableism. And honestly? As long as I live, I will never understand how people thought THIS would be the end of Trump’s campaign. We’re used as tokens. We’re mocked. Our rights are attempted to be stripped. Are we really surprised that someone seeking a position of power mocked us?

It wasn’t the end of it because not everyone believes disabled rights are human rights. It wasn’t the end of it because that’s just how our society is. Perhaps I’m callous and cynical, but I’m no longer surprised when people mock us. What I continue to be surprised is that OTHER people are surprised – I guess because it’s something I’ve always known.

It wasn’t the end of it because of how disabled people are viewed. It wasn’t the end of it because society has normalized this behavior. It wasn’t the end of it because society defends and justifies this behavior.

That’s why it wasn’t the end of it.

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LuLaRoe, Disabilities, and No More.

I have made it no secret that I love LuLaRoe. The clothes are cute (when the patterns aren’t fails), they fit well, they’re comfy with my various health issues. And I’m saddened that I have to say no more.

Now, this isn’t the first time LuLaRoe has been problematic, to say the least, in regards to their consultants and disabled people. But for many people, like myself, this is the absolute final straw.

A few days ago, a fairly well known seller posted a video mocking people with disabilities. You can view it here if you haven’t seen it. If you don’t have the stomach for it or have difficulty hearing it, the problem is that Bobby uses The Voice (oh, you know the one. The one people use to mock disabled people. The one people use to make fun of developmental disabilities. THAT one). He declares “My name is Bobby, and I’m special. My name is Bobby, and I’m very special.”

Things blew up, and quickly. People were quick to call him on his ableism, quick to point out that this was making fun of disabilities. Quick to say that hey, this isn’t an acceptable way for someone conducting a business to act, nevertheless someone who is a decent human being.

He apologized. Well, sort of. You can see the apology video here but it’s long and ableist, so I’ll summarize for you. They defended it, because they have a disabled family member and that’s how they “joke around” with her. They apologized that they shouldn’t have done it… live. Shut the front door. They aren’t sorry that they mocked people with disabilities. They’re sorry they did it in a live video. He also says super weird things like “I always thought I’d have a Down Syndrome in my family” which, um, doesn’t really make a lot of sense? And if that’s how you treat your SIL off camera, just, wow.

Now. I hope your seatbelts are bucked, because the ride is just starting, my friends. The founders of LuLaRoe, Mark and Deanne, have a granddaughter with Down’s syndrome. As the custom is with LLR, Scarlett has a dress named after her. A portion of the proceeds  of the Scarlett dress are donated to the National Down Syndrome Society. LuLaRoe has raised a large amount of money for the NDSS, which was allegedly a post “near and dear” to their hearts. Right? So clearly they would choose their granddaughter over a consultant.

Wrong.

The National Down Syndrome Society found out what happened. And they were pissed. They gave LuLaRoe an firm line: either cancel Ableist Consultant’s contract or they were severing ties with them. You’d think that they’d do the right thing? Oh, nope. Here is the statement from the NDSS. And here is the statement from LLR.

Notice how very different they are? LLR’s statement is very “poor us,” They chose someone who mocked disabilities over supporting their granddaughter. They chose someone who violated their terms and conditions, over their granddaughter. Don’t believe me? Here, have a screenshot of the terms and conditions.

 

Here is the text/copy pasted for those with screen readers or who are Blind/Low Vision.

“Each Independent Fashion Consultant agrees to adhere to the following:

1. Conduct themselves and their business operations in a legal, moral, honest and ethical manner at all times.

2. Avoid actions that could result in conflict with other Independent Fashion Consultants or customers.

3. Honestly present the product and income opportunities

. 4. Speak well of LLR, other LLR Independent Fashion Consultants and our competitors. 5. Focus on building business through relationship building and superior customer service.

6. Abide by product guaranty and return policies.

Here are the last two items: 

Plain text:

“7. Follow incentive guidelines for your party Hostesses.

8. Conduct your business in such a way that strengthens the LLR brand and improves the opportunity for all Independent Fashion Consultants”

Okay. Hold up. The ethical and moral part? Does that only apply to consultants they don’t like? Apparently, because this guy STILL HAS A CONTRACT. Why? Because they don’t want to hurt his ability to provide for his family. Do “ethics and morals” only apply when it is against someone you don’t like? Why is it someone allowed to act in a way that isn’t ethical or moral, but apparently that isn’t a violation because “oh, he said he was sorry?” Saying you’re sorry means you still have to accept the consequences. But they chose to stand with a consultant…but not the NDSS.

And so, they hurt the ability of the NDSS to support children. Between the gala last year, the Buddy Walk, and donations, LuLaRoe raised a large sum of money for the NDSS. And they chose one consultant over all that. They chose a consultant who mocked their granddaughter.  

I believe that people can make mistakes and learn. But this isn’t a mistake. This isn’t the first time that LuLaRoe hasn’t done anything about discrimination toward disabilities. Consultants have discriminated against deaf customers. They still have contracts. Deanne herself referred to kids with sensory processing issues as “weird sensory issues”.

I am angry. And you know why? The apology that was given was very much a “we’re sorry we got caught”. I know this because it’s the same tune, different words that was always used when someone was told they had to apologize for bullying me. And every. single. time. they did it again. They just got savvier about it, they just changed the way they did it. It never stopped. And the apology was about the consultant and how they felt, not about the people who were impacted.

I am grateful for LuLaRoe. I met friends through it I wouldn’t have met otherwise, and other friendships were deepened. And that is invaluable to me. But I can’t support them any longer. I hate that I can no longer in good faith support my friends, I hate that I now feel sick to my stomach thinking about buying it. But when they are refusing to uphold their own terms and conditions (how is making fun of disabilities ethical? Why did this person get a get out of jail free card, when other contracts have been terminated for far lesser infractions?). If this had been a “little fish in the sea” consultant, I fully believe their contract would be terminated.

But as a result of this, the consultant gained business.  The group numbers increased. People flooded their page to buy their LLR, to support them. OF COURSE LuLaRoe isn’t going to terminate their contract, because it’s lining their pockets. Why are we allowing money to trump basic human decency?

Prove me wrong, LuLaRoe. You know better, so why the heck aren’t you doing better? You can’t bring out the ignorance card: people have tried to educate you. People have told you why your decision hurts them. And you don’t care. You have proven, over and over again, that you don’t care for me and my kind.

And that’s why I have to say no more. It’s why I am done with you. I can’t support someone who doesn’t support some of the most important people in my world – who thinks of lining their pockets before doing what’s right. Shame on you.