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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. 

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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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What’s on my mind?

Facebook asks me what’s on my mind. It’s kinda creepy, really. It also always thinks I’m at target or out getting waffle fries. Which neither are inaccurate if we are being totally truthful. 

But the problem is? I don’t know how to say what’s on my mind. 

But Nora!

You’re such an eloquent writer. But Nora! Just type or say the thing. 

That’s the problem. 

I can’t. 

You see, the word are trapped. The emotions are trapped. The feelings are trapped. 

It’s like alphabet soup and just a bunch of letters swirling around. Sometimes I can scoop out a random word but it isn’t very helpful or relevant. 

I have so many secrets. Oh, everyone has secrets

But this is stuff I’ve not told everyone. 

Stuff I’ve not even dared write out. Because I’m scared to be faced with it. 

It can’t be that bad. 

Well no, but it’s not that good either. 

It’s trapped. I want to speak the words. To type the words. To free myself from the words. But I don’t know how. I’m stuck. I’m trapped. And I’m scared. 

I don’t like feeling like this. The words. The thoughts. The feelings are terrifying. I want it out. I so badly want to be free of this hell I’ve been trapped in for decades. 

But yet. 

I smile. 

I laugh. 

I joke. 

I act like the good person I know I have to be. 

I have been told how smart and capable and resilient I am. 

And so I stay trapped in my head. 

Locked in my own body. 

And it’s terrifying. 

I mean. 

I’ve written out what happened before. My childhood. My past. Some of it. 

But there’s so much more.

A few eyes have seen it. 

But not many. 

And I’m scared. 

I’m terrified.

I have so many thoughts that are still trapped. So much stuff I haven’t dealt with. 

So many nightmares. So many flashbacks. 

And I want to move forward. 

I want things to change. 

But they can’t. 

Because the words are trapped and I can’t pull them out. 

I’m just not smart enough to fix this one.  

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Do you know what ableism is?

Image is of a pink hot air balloon against blue clouds. Text reads "Ableism is living in a world that is not equipped for me.

Image is of a pink hot air balloon against blue clouds. Text reads “Ableism is living in a world that is not equipped for me.

 

 

Do you know what ableism is? Do you know what it’s like to live your life when ableism is facing you literally every time you turn around? Do you know what it’s like to be disabled in an ableist society? Do you know what it’s like to be autistic in a world that’s crafted for neurotypicals? Do you know what it’s like to be physically disabled in a world that actively oppresses your very existence? Ableism is living in a world that’s not equipped for me.

I am Autistic. Ableism is when people insist on erasing my identity, and calling me a “person with autism”, despite the language I have chosen for myself. Ableism is when people force me to look into their eyes, even when eye contact is physically painful. Ableism is when people judge me for stimming in public. Ableism is when people refuse and try to make me into something that is actually impossible for me, due to being Autistic.

I have major depressive disorder. Ableism is just telling me to have more vitamin C, exercise more, get out more, etc. No! This will not help my depression. What I need for you is to listen to me when I tell you how to support me. Not to scold me for making the choice to be on antidepressants. Not to belittle me for the way I cope.

I am physically disabled. Ableism is telling me to stop seeing so many doctors. To just have a more upbeat attitude. This is not acceptable.

I have cognitive and executive functioning problems. Ableism is telling me to just get over it. Ableism is telling me to suck it up and do it. Ableism is telling me that you believe in me and I can do the thing, even when the thing is actually impossible for me. It isn’t as simple as just getting up and doing it. I actually cannot. I am not wired that way.

Ableism is when parents tell me I am not like their child. That I am so high functioning. Ableism is insisting on using functioning labels, even when I tell you that I don’t like them and in fact, actively oppose them. Ableism is insisting on calling my impairments mild or severe, despite the fact that some aspects are mild and others are severe. It isn’t black and white like that.

These are aspects of ableism I face in my life every single day as a disabled adult. Feel free to comment on what ones you face. I know I’ve missed so many as ableism isn’t a one size fits all and something every single disabled person faces.