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To the person who sent me a nastygram

I am disabled.

My disabilities and my health issues, both visible and none, psychiatric and other types, hinder my various abilities in life. I don’t know what it’s like to be able bodied. I don’t know what it’s like not to have a disability.

Being disabled is hard. I sometimes lose things I love – like events I’ve been looking forward to for a year, friendships, certain aspects of freedom. I cope by talking about it.

Like a lot of people in my age demographic, I opened a Sarahah account. I knew I was taking a risk. But I got so many nice, sweet compliments and when I’d feel down, I’d read them and feel better.

But there’s always that one.

“You talk about your health problems too much and it makes you seem desperate for attention and pity. Grow up.”

I don’t do it for attention or for pity. I do it because it’s my life. I do it because it’s the reality of how I live. I literally don’t know life without being disabled.

I assume you wouldn’t tell someone who posted constantly about their kids they were desperate for attention and pity to grow up, right? After all, they live with their kids and see them every day. Most people are okay with people talking about their kids and don’t write them off as immature.

What if someone talked about their hypothetical job constantly? Again, they must be desperate for attention and pity, right? No, I guess not.

So WHY is it so taboo to talk about my health constantly? It’s what I live with every day. Juggling doctors, juggling appointments, finding the fine balance between what I can and can’t do is incredibly difficult. I talk about my health problems. I actually have been working on posting it less.

Disabled people are often put up on a pedestal to admire, we’re expected to be inspirational, we’re expected to defy the odds. But not all of us do. Not all of us defy the odds. And there’s nothing wrong with that.

I don’t know who you were. I don’t know who you are. But please, just delete me from Facebook if you’re that annoyed with me talking about my life and existence as  attention or pity? I honestly don’t give a crap if anyone comments on my stuff. If anyone feels bad for me. I just want to talk about my life and my existence as it is.

And finally? Saying something like that anon, and telling me to grow up is actually hilarious. Pretty sure that means I’m not the one who needs to “grow up” if you’re sending anon nastygrams. There’s a delete or block button, and I suggest you utilize that if I annoy you that much.

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Accepting Depression

I’ve made it no secret that I have depression and anxiety. It’s very much a key aspect of who I am. It shapes how I view the world, it’s the lens I make decisions through. It’s my very core – I don’t know who I am without depression and anxiety. Despite meds (which is my choice!), despite therapy (again, my choice – I am currently choosing not to be in therapy but that isn’t a choice I have always made or had the option of making), despite hospitalization in the past… it’s very much a part of me.

I don’t know who I am without depression. I don’t know who I am without OCD. I don’t know who I am without anxiety. And that’s not necessarily a bad thing. Part of accepting being disabled has been accepting depression. Accepting anxiety. Accepting OCD.

It doesn’t mean it’s not disabling. Oh lord, it doesn’t. It doesn’t mean I don’t learn coping skills or ways to navigate the world. That’s silly to think I don’t. But it does mean that I realize it’s a part of me and I make accommodations in the world to make it possible for me to get around. It might mean I need a friend to talk me down when anxiety brain goes haywire. It might mean that some nights I need someone to watch fluffy and/or crappy YouTube videos with me. It might mean that some nights I’m just a puddle of exhaustion and brain cooties.

And that’s okay, because it’s my normal. That’s okay, because it’s the person I am. Accepting my limits, accepting my flaws has been crucial in accepting who I am. It doesn’t mean I glorify it, by no means do I. I don’t think it’s amazing to be depressed, I don’t think it’s great to have soul crushing anxiety that impacts every little thing I do.

But I do think it’s okay to accept it.

I do think it’s okay to say that other people need to accept it if they want to be my friend and interact with me. I do think that it’s wrong that when many people find out that I am psychiatrically disabled, their immediate reaction is “you need meds”, “you need therapy”, etc before they even interact with me and find out why I am the way I am.

Accepting my disabilities has allowed me to accept who I am. It’s high time for other people to accept them now, too.

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I reach out to the truth

Now I face out, I hold out
I reach out to the truth of my life
Seeking to seize on the whole moment to now break away!

Oh God let me out, Can you let me out?
Can you set me free from this dark inner world?
Save me now last beat in the soul.

My entire life I’ve been told there are so many things I cannot do because I am disabled. I’m a victim of both being told there are so many things I cannot do and that Ic an do anything I set my mind to. How these both work, I really don’t know.

As a result, I’ve been trapped in lies. Lies that I’m not good enough. Lies that because I’m disabled, I cannot achieve anything. I’ve been told that I need to not let my disabilities define me or hold me back. It’s confusing. And I need to find my own truth. Make my own truth. Find my own path.

Something I’ve learned is I need to reach out to my own truth. Reach out to it, even. Because it is within reach.

Because it doesn’t matter what I’ve been told. They were wrong.

It doesn’t matter what I believed.  It was wrong.

But what matters is the truth I know now and what I do with it.

 

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I didn’t graduate college, and that’s okay.

I didn’t graduate college.

I have a massive pile of debt. Debt I will never be able to repay. I have loan companies calling me daily telling me I have to pay when it’s literally impossible. I have a cap and gown that I’ll never wear. At times, I still daydream of the degree I wanted so desperately and came so close to getting.

I didn’t graduate college.

College classes aren’t designed for disabled students. While schools have disability services, they aren’t always to make classes Nora-compatible. My immune system is too week, I get stressed out too easy, I get  too severe of sensory overload, I simply can’t people, oh, you get the picture. They can’t custom craft a class to be perfectly okay for me, because then it would make it inaccessible for someone else.

Part of learning, part of growing, part of acceptance has been coming to terms with the fact I won’t get my degree. I was merely a semester and a half away. But my classes cannot be completed in the state I am now. I didn’t graduate college.

But I am not worthless. The fact I don’t have a degree doesn’t mean that I failed as a person. It doesn’t mean my classes were worthless – I learned a lot. It doesn’t mean that I am worthless – not everyone gets a college degree. I still write a blog. I still advocate. I’m still an activist. I still do so many fun things with my life!

I don’t have a degree. Sometimes I do get stir crazy without classes or a job, hence why I’m trying to find a volunteer thing. I’m not happy just sitting around doing nothing on the days when I feel well enough to do things. I try to do what I can, but it’s really hard when society is designed to go against disabled people.

But I am worth it. I am worth trying. I am worth doing things. And that worth isn’t defined by fancy letters after my name or a really expensive piece of paper.

 

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Adventures with Anxiety-Girl: now with extra anxiety powers!

Hi, my name is Nora and I have anxiety.

I have officially diagnosed general anxiety disorder, OCD, and a smattering of phobias as well as suspected social anxiety. This makes life, well, interesting at times. Living with anxiety isn’t easy. Living with anxiety is kind of like living with someone who is constantly abusing and gaslighting me, only that person is me and lives inside my own head. It’s horrific.

I feel that a lot of times, people think I use my anxiety  as an excuse. No, it is’t that I just don’t want to make a phone call. It’s that I literally feel physically ill before making them. I often wind up shaking before and after making them. It isn’t just unpleasant, it’s literally uncomfortable and often times actually physically painful. I’ve had full blown meltdowns and thrown up simply because I have to make a phone call. It isn’t attention seeking, it isn’t guilt tripping. Making that phone call is sometimes actually, really and truly, impossible.

While I’m an introvert and hardly a social butterfly, I’m also bubbly and outgoing. I like going out and doing things. However, anxiety!brain is sometimes plaguing me with “what ifs?”. What if this happens. What if that happens. What if if if if if…and starts to spin me into a downward spiral of despair that is neither productive nor helpful.

I have been this way since I was a young child. I don’t know what it’s like to not have anxiety. I replay convos with friends over and over in my mind, before and after they’ve happened. I honestly had no idea that people existed that didn’t obsess over everything they said or everything someone else said. When I started texting, I didn’t know it wasn’t normal to panic over words on my screen.

Sometimes I’ve seen people ask “what’s one thing you wish people understood about xyz?” There isn’t one thing I wish people would understand. I just wish that people would realize that it ISN’T simple like that. Just understanding one aspect of it won’t magically make my life easier. Just understanding that hey, sometimes I can’t do the thing you want me to do or something I have to do things differently so anxiety brain doesn’t cause me to have a panic attack doesn’t really make a big difference. What I DO need you to do is to stop shaming us.

Different people cope with their anxiety differently. I choose to medicate. For me, it’s the best choice. I can tell a difference in when I take my meds and when I don’t. For ME, Nora, medication is the right choice. I will not, and should not, be shamed because I choose meds. However, for someone else, medication may not be the right choice. It may make it worse, or they may plan just not want to take medication. And you know what? That’s their choice too. Just because we have psychiatric disabilities doesn’t mean we should be denied agency.

Anxiety always has, and always will, be a part of my life. I’ll never fully live without it. Through self care and accepting my limits, that’s what living looks like to me. That may not be it to someone else, and that’s okay. But this is my edition of adventures in Anxiety Girl! Your milage may vary.

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when your ableism is about yourself

I’ve talked and talked about ableism. I’ve talked and talked about what bullcrap it is. I’ve written so many things about how much ableism has an affect on my life. I’ve said so many things about how much of an impact your ableism has on my own life….

And yet, the person I’m the most ableist is someone I see in the mirror every day. The person that I know the most intimately. The person who is intertwined with me…because that person is me. The person I’m hardest on? The person who I use ableist slurs at? That person is me.

It’s pretty common knowledge I withdrew from college. Largely because of my physical health at the time, but I’d be lying if I didn’t say my neurodivergent brain wasn’t also a factor.

Which is where my own ableism comes in.

I tell myself that if I had just pushed myself harder, I could have gotten that degree.

Which is bull, because if a friend had done the exact same thing, I wouldn’t dream of saying that to them.

Somehow, the words I would never utter to someone else, are magically OKAY when it’s about me.

[image description: drawing of an orca saying “Just because you had to drop out of school doesn’t mean you’re a failure.” in a gray speech bubble. Thank you to EMM not EMMA. on Facebook)

[image description: drawing of an orca saying “Just because you had to drop out of school doesn’t mean you’re a failure.” in a gray speech bubble. Thank you to EMM not EMMA. on Facebook)

In high school, I was told that I could do whatever I wanted. That my disabilities wouldn’t hold me back. In fact, I was told I minimized my “struggles” and didn’t fully grasp how much my disability impacted my life. This casual ableism, this micro- aggregation… became so twisted inside me, so much a part of who I was… that I likely stayed in college for far longer than I should have.

My own, personal ableism could have killed me. I tell myself my disabilities are no big deal, even though I’m totally and permanently disabled. I cannot work. Not only is my health too unstable, I’m likely to push myself on the days where I am well enough too much and land myself in the hospital. I was threatened at least once while in college that if I didn’t skip class, my doctor would put me in the hospital. My own, personal ableism is lethal.

I talk about the ableism I deal with from others on a regular day. But to admit that I am ableist about myself is hard, one of the hardest things I’ve ever said. I feel that people judge me, and think I’m just selfish or lazy because I can’t get a job. It isn’t for lack of wanting. I desperately want nothing more than to hold down my dream job. I want nothing more than to finish my college degree, but college is a world that is completely inaccessible for me. And THAT is terrifying to say, terrifying to admit. It’s like I’m saying I’m a failure, it’s like saying I’m worthless (see, there’s my own casual ableism at play once again).

My name is Nora, and I am ableist sometimes. And the person I pull down, the person I bash the most, is myself. The person who I judge the most for their disabilities, is me. If another friend were autistic, had my physical health list, had my same brain cooties, I would support them. I would tell them  they were good enough, they were enough. That it was okay they didn’t finish college. But the person who I cannot give that same advice to is myself.

Part of becoming a better person, a better advocate, a better activist, is learning to remove the ableism from my life. Even when it’s about me. This isn’t easy, but it’s something I’m trying to do. And admitting is the first step, right?

 

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What if I stumble, what if I fall?

Father please forgive me
For I cannot compose
The fear that lives within me
Or the rate at which it grows

If struggle has a purpose
On the narrow road you’ve carved
Why do I dread my trespasses
Will leave a deadly scar

Do they see the fear in my eyes?
Are they so revealing?
This time I cannot disguise
All the doubt I’m feeling

I am scared. There is no way around it. I’ve spent my whole life  scared, really. I’ve been disabled since birth, though the list of diagnosis didn’t begin until I was three. When I was four and I became a childhood cancer survivor, I essentially became untouchable by insurance.  As I got older, the list grew and grew. We expected me to grow out of my disabilities, Instead, I grew into them.

And I’m scared. I’m so very, very scared. I’m outright terrified. I need thousands of dollars of medication a month to live. Thousands. Some of my meds do not exist in generics. I require numerous specialists. Health care reform is a very scary, serious thing in my world. I’m moving in under a week and I’m scared as to just transferring my Medicaid over state lines.

I’m scared my Medicare, Medicaid, and SSI will be slashed. I’m scared I won’t be able to get the meds I need to live. I’m scared I won’t be able to see my specialists. Imagine solely relying on government run programs to live. Imagine that private insurance isn’t an option for you – yes, thanks to the ACA I can’t be turned away due to my medical history, but I can’t afford private insurance and there isn’t a plan that would meet my needs.

I’m letting my fear show. I’m letting my doubt show. And let me. It’s hard for me to be vulnerable. It’s hard for me to be scared. Me wondering where this country is going to go isn’t me being a whiny crybaby, someone who’s feeding into hysteria, or any of that jazz. I rely on welfare to live. I literally would be dead without it. My lifetime health bill is in the several million mark. Do I not deserve to live? Do I not deserve to thrive? Do I not deserve a chance at life?

I  can’t hide my fears. I have to be open. President elect Trump, I need you to listen for once. I need you to know that disabled people like me deserve to live. I know I don’t have a job and you likely look down on me. But you know what I do have? I have a witty sense of humor. I’m loyal. I’m compassionate. I’m passionate about things. I’m fighting like hell against a world determined to pull me down. I’m an advocate. Won’t you give me – give us – a chance? We didn’t ask for this life but we’re living it.

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Summer has come and passed
The innocent can never last
Wake me up when September ends

I remember 11 years ago, being a doe-eyed senior in high school. The world was my oyster and all that cliche shit. I was still relatively healthy by my not-optimal standards. I was in honors classes (my school called them “college prep”. We had regular, college prep, and AP. Had I been public school all four years, I would have been an AP student but that’s not my point).

That September, almost every morning on the bus I heard Wake Me Up When September Ends, which I now associate with senior year. September is a difficult month. Everything started falling apart. September is difficult. Please be gentle with me. Know that my blog posts may be more raw and vulnerable. Know that I may be more cynical and snappy.

But please be there for me. Thanks.

-Nora

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Abuse is abuse 

As a disabled, autistic person the odds were staggeringly high for me to be a victim of abuse. I am the one in five. I have been physically, sexually, emotionally, and spiritually abused. It is just how it is. I’m finally safe, at age twenty nine. 

Many of my friends have also been abused. And I’ve heard so many of them say that because I’ve been abused “more” or because they’ve “only” been emotionally abused, it wasn’t that bad. Here’s the thing: there is no just for abuse. Abuse is abuse. Full stop. End of story. 

It’s easy for us to say things weren’t so bad. It’s easy for us to say that our abusd was deserved. I know that time after time, I’ve told myself. God, there are still nights where I tell myself that. That I deserved it. But it’s simply not true. 

I bet none of my friends who say they were “just” emotionally abused would turn and say it to a friend. There would tell them their experiences are real and valid. But yet it’s so much harder when it comes to ourselves. 

I’ve been emotionally and verbally abused by my former PCA. 

I was abused in all kinds of ways from my family of origin. 

I’ve been spiritually abused by the church. 

Each one led to my PTSD. Wanna know something? I got the PTSD dx based solely on my emotional abuse history. Before I told anyone about the other stuff. While I suspect I actually have complex PTSD, that is another story. 

If you have been abused, you have been abused. There is no only. There is no just. You were abused. You didn’t deserve it. Nothing you did could have made a difference. It is on them – your abusers. Not you. 

If you were abused, in any way, you are allowed to say so. You are permitted to have feelings. It’s okay to say that you had a traumatic upbringing. Because there is no just when it comes to abuse.