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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.

 

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Phobia vs Fear

Phobia is different than a fear.

I have things I’m scared of. We all do. But my phobias? Oooh, boy.

 

Let me give you an example.

I am absolutely, completely, 100% phobic of the dentist. Many people get some anxiety about the dentist. They’re able to push it aside, though, and eventually go. Me? I am not. I have to be heavily sedated or shit gets real. I panic and go into a full blown panic attack just thinking about going… despite having an impacted wisdom tooth and being in dire need of dental care. But due to the severity of my phobia, I am on the waiting list for highly specialized dentists in the twin cities.

I can’t just suck it up. I have been told by my problematic PCA (which is a blog post in and of itself, but due to my personal safety, I am not making it public outside of my personal Facebook until she’s gone) that I need to just suck it up and go. But. I have nightmares about the dentist. The anxiety is so severe I can’t even think about it safely. It consumes me. It isn’t just a matter of getting it done with, and doing something better after. I have to deal with the aftermath.

Phobias suck. But they aren’t fears.

Please don’t tell us to suck it up. This is dangerous.

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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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What I Wish Someone Had Told Me

It is rare disease day. Get it? Feb 29? Rare disease? Hardy har har. Clever, eh?

There are so many things I wish someone had told me before being diagnosed with rare disease. I have many – POTS. CVS. Immune issues. Hyper mobility syndrome. The list goes on and on. Many of them I was born with, others I grew into.

People with rare disease look just like anyone else. When I am just hanging out,  I look like anyone else. I look like I am healthy, even though my body is slowly killing me.

Image is from a few years ago. A pale brunette is sitting on a rock by a lake. She is wearing a sock monkey hat, a purple sweatshirt, a blue T-shirt, and jeans. She also has on yellow wrist warmers.

Image is from a few years ago. A pale brunette is sitting on a rock by a lake. She is wearing a sock monkey hat, a purple sweatshirt, a blue T-shirt, and jeans. She also has on yellow wrist warmers.

But there are so many things I wish I had known.

I wish I had known how lonely it was. How isolating it was.

I wish I had known how depressing it was.

I wish I had known it wasn’t lucky to have to drop out of college. To not be able to get a job and rely on disability. To be able to sit in bed and play video games and watch Captain America all day – because frankly, some days I am too sick for even that. Frankly, some days I am too sick to even turn on my laptop.

I wish I had known how soul crushing it was to have my hopes and dreams yanked away from me. To never achieve my dream career. To know my dream job is out there but to be incapable of getting it.

I wish I had known how big of asshats doctors and nurses can be. To not be believed. To be perceived as attention seeking. To be told it’s all in my head. To be nearly killed by the mistakes of doctors and nurses.

I wish I had known what intractable pain was truly like. That as I got older and as time went on, the pain would only get worse, and not better. I would become resistant to more and more medications. Have surgeries as a desperate attempt to not be in horrifying pain all the time… and have them fail.

I wish someone had told me how much it would impact my depression. That there would be days I would be so depressed I couldn’t move. Couldn’t eat. Couldn’t sleep.

I wish someone had told me there would be days where I literally have to ration out my energy and decide between peeing and showering. Eating or showering. Getting the mail or making a phone call. The fine juggling act would become a daily battle, and it isn’t just a one off thing.

I wish someone had told me all these things…

But you know what else?

I wish someone had told me that there are people out there who understand. That there are medical communities, zebra communities, spoonie communities… a place where we all understand each other, even though  our disorders are not all the same – even though we have different medical histories, we understand.

I wish someone had told me I would find my true friends who are there in thick and thin. The ones who would distract me while getting injections. Who would get me stuffed animals that now accompany me to the hospital. Who blow up my phone and facebook wall when I need them.

I wish someone had told me that I would still find hope. Not hope for a cure, but hope for a treatment.

I wish someone had told me I can still make a difference in the world. Not in the way I thought I would, but in other ways.

I wish someone had told me that I am more than a list of medications and medical disorders, and one day I would believe that.

I wish someone had told me that despite my disorders and medical history, I would still be able to fly across the world to visit some of my favorite people in the world. That I would make incredible friendships. And even though I would lose one of them – my beloved Beth – her impact would never leave me.

I wish someone had told me that there are good doctors and nurses out there. Ones who believe me. Ones who advocate for me. Ones who will literally save my life.

There are so many things I wish I was told. And so now, I am telling them to you.

 

 

Alone we are rare.
Together we are strong.

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but she still sleeps with the light on

the hardest part about being disabled has been coming to terms with the fact that i will never work my dream job.

that i will never be able to be there for sick and dying children.

that i will never be a hospital chaplain.

that i will never be able to work with children in hospice.

i’m losing hope. for the future. my future is bleak. i know, it sounds fucking absurd to say that at age twenty-eight. i have my whole life ahead of me. but at the same time, i don’t.

i’m a college drop out.

my health is too unstable for anything.

i keep forgetting doctors appointments – i’ve missed three or four in the past WEEK.

i keep getting sicker and sicker with things that there are not treatment for, no cure.

my depression is spiraling me out of control.

completely out of control.

i feel hopeless. bleak. empty. futureless.

i’m not even capable of sleeping unless the light is on.

everything thinks i’m strong.

everyone thinks i’m capable.

what they don’t know is i’m falling apart.

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And I have to say the words I fear the most: “I just don’t know.”

 

And the pain falls like a curtain, on the things I once called certain
And I have to say the words I fear the most, I just don’t know

And the questions without answers, come and paralyze the dancer
So I stand here on the stage, afraid to move, afraid to fall..
– Stephen Curtis Chapman

 

I am scared.
There is a lot I don’t know right now. My entire LIFE is up in the air. Everything is falling apart. I am spiraling. Spiraling out of control. My lack of being able to function normally has cost me friendships. Has cost me tears and spoons and has laid pain on me. Everything is spiraling.

My depression is the bleakest, and darkest it has been in years. Literally years. I feel trapped. Caught. Torn between everyone I love. I’ve had to throw my hands in the air and say I CANNOT DO IT. Which is one of the fucking hardest things I’ve ever done. I very much have the loyal personality. The one who wants to fix things. The one who wants to make everything right. To have to say I CANNOT DO IT is taking everything out of me.

I don’t like admitting I am weak.
I don’t like admitting that I cannot do it.

I am stubborn. Horribly so. I am loyal to a fault and it has bit me in the ass. So to be torn between two groups of people, to have to admit that I cannot function and I literally cannot deal… it’s killing me. And I wish people understood.

Depression is so fucking bleak. I take pills – I take three different little pills to try and lift me out of this funk. But yet I am still drowning. My anxiety  still overwhelms me. My depression still crushes me. A couple weeks ago, I relapsed into self injury for the first time in years. I am struggling to eat right.  To sleep right. Everything is all turned around and topsy-turvy.

I hurt. physically. emotionally.

I am watching everything I love and care about fall apart…

And here I sit, scared to click publish.

Scared to be vulnerable.

When I know there are others hurting, too.

When I know my words aren’t just falling on ears that aren’t listening.

When I know people read this and care  – and hell, can relate.

That by publishing things, someone may feel less alone – even if that someone isn’t me.

I am broken.

And now, I hit publish.

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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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To the parent of the depressed child

(Image is of 15 year old me. I am wearing a navy hat, a navy Limited Too T-shirt, and navy track pants. My glasses reflect the campfire in my eyes)

So your child was just diagnosed with depression. I was that child once. It was official when I was 14, like in the photo above. As I got older, my mental health list began to resemble alphabet soup with all the mental health disorders.

There’s some things you need to know. There are tips you need and ways you can love us, perhaps in ways you never thought of.

I was fairly young when my depression started. It became officially diagnosed in November of 2002 when I was suicidal. Since then, it’s been a roulette of therapists, doctors, and medications. I also have OCD and GAD, as well as PTSD. As I said, alphabet soup.

Please know that you did nothing wrong (I mean, unless you’re an abusive asshat. But this is assuming you are not). Know that we still need and crave your love and sometimes, we don’t even know why we’re depressed.

Just because we’re depressed, it doesn’t mean that we’re sad. We’re empty. We’re scared. We’re lonely. We don’t know what we’re feeling. We’re hopeless. We’re feeling so many things.

Know that depression is not merely a phase. For many, it’s a lifelong struggle.

(Image is me at age 17. I am wearing a brown camp T-shirt over a green long sleeved t-shirt. I am wear light wash jeans. My legs are draped over my chair)

 

Despite nice weather, I would wear long sleeves to hide the fresh cuts. Please know that I’m not doing it to hurt you. I’m not cutting myself because I want to die. Rather, I’m doing it because I want to live.  While self injury seems scary to parents and people who don’t understand it, to us, it is our lifeline.

Please know we aren’t doing it to blackmail you. We aren’t doing it for attention. We’re just trying to survive this fucked up world in the only way we know how. It scares us as much as it scares you, sometimes.

Please listen to us. Don’t freak out if we talk about what to do it. Stay rational. Learn our ways of distraction – play a board game with us. Watch a movie with us. If we’re reaching out to you, it means we trust you and that’s a HUGE thing.

Know that we may need someone who is not you to trust and talk about. It doesn’t mean we don’t love you. It doesn’t mean we’ve failed you

(Image is of me wearing an orange top and grey sweatpants, hugging a random statue)

My depression worsened in college. I was at a school that was a poor fit for me.  My physical health was failing.

Please know  if we have to withdraw from things – college, jobs, social events, it doesn’t mean we’re lazy. It means we’re simply overwhelmed. It means that life is too much for us. Trust me, generally we’re as heartbroken as you are that things have turned out like this.

Please know that if we’re struggling to function as adults, it doesn’t mean you haven’t raised us right. It just means are brains are being jerks. Just because we need downtime after socialization (in cases of anxiety at times), doesn’t mean we don’t love you. It just means we need time on our own

(Image is of me just a few months ago. I am sitting on a huge rocking horse. I am wearing a purple floral jacket and grey yoga pants).

 

But now I’m 28 years old. I haven’t cut in nearly six years. We have finally played Russian roulette with medications enough that we have a combo that keeps me stable. I’m in therapy, and will be the the foreseeable future.

But I’m gradually overcoming my depression. I’ve learned to accept that it’s a part of me, it’s somewhat what makes me ME. And I know I’ve come a long way from where I was.

Living with lifelong depression is hard. Please don’t make it harder on your children.

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Invisible Illness: Mental Health Edition

Image is of Chronic Illness Cat - a siamese with blue eyes. Text says "Anxiety? Depression? It's all in your head. NO SHIT."

Image is of Chronic Illness Cat – a siamese with blue eyes. Text says “Anxiety? Depression? It’s all in your head. NO SHIT.”

So. Apparently  it’s invisible illness week. I’m going to do two posts. My first one here is about the mental aspect of my chronic illness.  Tomorrow, I’ll do the physical one.

I have depression.

I have PTSD.

I have OCD.

I have GAD.

To many, even me, it looks like an alphabetical clusterfuck. I take three different medications a day to try and keep my brain from frazzling out. I am in therapy – I have been for four years and a half years and will be for the foreseeable future.

Some days my future is bleak.

Some  days I can’t leave my apartment.

Others, I can’t leave my bed.

Some days, I am fully functional.

It isn’t a one size fits all.

There is no cure.

I only learn to live.

To adapt.

To change.

And to grow.

But, I’ve accepted it. These things suck balls, that much is true.

But it doesn’t change the fact I’m an awesome and compassionate friend.

It doesn’t change the fact I live and laugh and love.

It is just a part of my brain chemistry. The way I am.