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It’s time to trust my instincts, close my eyes, and leap

I’m through accepting limits, because someone said they’re so
Some things I cannot change, though till I try, I’ll never know
-Defying Gravity, Wicked

I am fiercely stubborn. If you tell me I cannot, I will. If you tell me not to do the thing, guess who is going to do the freaking thing? I have a love/hate relationship with this trait. It makes me an awesome Hufflepuff because it means I will kick the butt of anyone who hurts my friends. At the same time, it makes it hard and painful to walk away from friendships that are not healthy for me.

I have trouble trusting my instincts. My entire life I’ve been told they’re wrong. That I need to do what the world tells me to do. Sit down, shut up, be quiet, be still. Even though all these things are literally physically difficult for me. I fidget. I stim. I’m vocal at times. But sometimes I trust that instinct. Sometimes I close my eyes, and leap.

As a disabled adult, I’ve been told so many things I can never do. I’m tired of accepting those limits. There are some limits I have accepted, and others I have not. I have accepted that I will never go back to college and never have a job. I refuse to accept that my life is not worth living. That I still can’t be an advocate and an activist. I refuse to accept that my life has no value, just because I cannot live up to what society says a “good person” should do, what society says someone who contributes to it is like.

I’m funny, I’m loyal, and yes, I’m disabled. I have the limits my own body and my health puts on me, and I have the bullshit limits the world puts on me. But you know what? Striking the balance is fine. Shouting out “NO” to the limits that everyone else tries to put on me, tries to pin me down with, is perfectly okay and perfectly acceptable. Because I, and only I, get to choose my limits. I get to choose what I can and cannot do. I get to decide. And that alone is a huge step. That alone is a big deal.

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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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Ten years ago…

Ten years ago, I was a senior in high school. I had so many hopes and dreams. I had plans. I had ambitions. I had been dealt a pretty crappy hand in life, but I was determined to make the best of it. I was going to graduate, and I was going to kick ass and take names. I was going to get a job. I knew what I wanted to do in my life. I was young. I was naive. I had no idea what was in store. There was so much I didn’t know. But I knew I wouldn’t let my illness hold me back.

Image is one of my senior pictures: A brunette female with wavy hair. She is wearing a blue sweater and khakis. She is sitting behind the numbers 06.

Image is one of my senior pictures: A brunette female with wavy hair. She is wearing a blue sweater and khakis. She is sitting behind the numbers 06.

I was confident, and scared, all at once. I was graduating against seemingly impossible odds. I was told how amazing, inspiring, faithful I was while inside, I was falling apart. I was told I had a promising future – I was bright. I was smart. I was bubbly and passionate. Against a world that seemed determined to pull me down, I would prevail.

But that summer, my grandfather died. That fall, I enrolled in college for the first time. Both my physical health and my mental health completely fell apart and I spun so out of control I was asked to leave the college. That was the first time I dropped out of school, and it wouldn’t be the last.

Later on that year, I was admitted to the psych ward for six weeks, going into the beginning of 2007. And then I went to a group home. It was hell. Everything I had hoped for. Everything I dreamed. Gone.

 

Five years ago, I was transferring colleges. I had dropped out one other time and had finally completed classes. However, the college I was at wasn’t meeting my needs. I was preparing for back surgery before transferring colleges. I wasn’t the person I thought I would be. My career path had changed. But that’s okay – part of life is growth, right?

Image is a brunette female holding chopsticks.

Image is a brunette female holding chopsticks.

But that surgery didn’t go as anyone planned. I wound up with more doctors, more specialists, more pain, and eventually another surgery. I was still hopeful. I was still, as I like to say, kicking ass and taking names. I am stubborn and I fight like hell for what I want. This is both a blessing and a curse. My doctors would literally have to threaten me with inpatient treatment if I didn’t skip class because I was so determined to do well. For so long of my life, I had put worth in grades and doing well in school and dammit, this wasn’t something they could take away from me.

But it all came screeching to a halt. Despite modified course loads, despite every reasonable accommodation possible, I dropped out of college yet again. For seemingly the last time. My hope was gone. I was a semester and a half away from graduation. I was so close I could taste it. I could imagine the feel of that diploma in my hand. It was what I had worked toward for so many years… and it was gone.

That brings us to today. I’m sitting at Starbucks sipping an iced Americano. “You Can’t Stop The Beat” from Hairspray is playing in my earbuds. I never imagined that my life at 28 would involve being an activist and an advocate. I never imagined I would find things I’m passionate about. I never imagined that I would still not have that degree ten years ago. I never imagined that my medicine list would be so extensive that I would have a nurse come fill my med dispenser every week because I could not keep up.

Image is a brunette female. She is wearing a green sweater, a blue t-shirt, a blue and green tutu, black tights, and silver shoes.

Image is a brunette female. She is wearing a green sweater, a blue t-shirt, a blue and green tutu, black tights, and silver shoes.

But I am living. I am thriving.  I have a life that I could never imagine. Because of my autism and disabilities, I have an amazing circle of friends I would never have otherwise. Because I am stubborn, I found something else to throw my passions and love into.

Ten years ago, I was eighteen years old and frankly, didn’t know anything about life. I thought I knew it all and was likely a cocky asshole. I knew I would get that degree. I knew I would do well in college in spite of my disabilities, and I cringe at that language now. I knew that my life would turn out just the way I want it.

As the John Lennon lyric states “Life is what happens to you when you’re busy making other plans”. Everything changed. And it is all a beautiful, messy mess. It’s all a part of who I became. And I love it. Back then, I was Angelique – young and naive. But now I am Annora. I am strong. I still have  a future ahead of me. I may not be working in the way I thought I was and I may not be making a difference in the world like I thought I would be – but I am slowly changing my own world.

I am living. I am thriving. I have depression. I am autistic. I have OCD. I had PTSD. I have a list of medical disorder’s that is so long that I have to carry a list. I take so many medications that pulse through my body, keeping me alive. I never imagined this would be my life. But you know what? Because of it, I am thriving. Because of it, I have a great life. Because I am autistic and disabled,  I have a life that is worth living.

My life is beautiful.

My life is mine. It may not be what I thought it was and even one year from now, it may look vastly different. I’ll look back on this and laugh. But this is what it is right now and it’s good enough.

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Fluffy white clouds

In going through my files from… well, let us not talk about how old these are and how out of order my files are… I found this poem I wrote in 2006 for creative writing in high school. Making it a decade old. Shush. I’m not that old. 😉

 

So I present…

 

Fluffy White Clouds

fluffy white clouds,
against crystal blue,
floating. falling. shapeless.
we try to make them
into something they are not
castles. bears. dragons.

against the emerald cushion,
prickly. rough. sticky.
I stare up at the sky,
fluffy white clouds,
against crystal blue.

life. beautiful. simple.
starting without a shape,
trying not to fit
into the mold,
we are given.
trying to make it,
into something it’s not.

like fluffy white clouds,
against crystal blue.
it can look like
whatever we want
we could be
famous. beautiful. brilliant.
it all depends on the angle
and how we look at it.

fluffy white clouds,
against crystal blue
is life really as simple as this?
being able to mold it into
what we desire, what we long for
what we hope for?

fluffy white clouds,
against crystal blue.
molded into what we want,
and becoming what we desire
in life.

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I wonder what could be so tragic, make you want to take your life

It’s hard to see beyond your pain, when you feel so dead inside. It’s hard to see what you’ve been given, it’s hard to see the hope in life. And I know it’s hard to take what’s happening, and I know life is tough sometimes. And I know it seems like there’s no hope for you, and I know that your life is worth more than you can see. 

This is a Christian song by Seventh Day Slumber. It quite literally saved my life junior year of high school. I didn’t really like the Jesus-y parts as much (and they’re there, trust me) but the second verse and this chorus helped so much. The worst of my high school depression was the 2004-2005 school year. I went from private school to home schooled. I lived with my abusive father. I had very few friends and found solace on message boards. I was in the deepest parts of self injury… most of my pictures from that time frame involve long sleeves. And yet, this song carried me through. This song reminded me that there was hope beyond the horizon. That you know, it’s okay that things suck right now. Sometimes life just sucks and kicks you in the ass. And there’s not a damn thing you can do about it. But at the same time, it’s going to get better. It won’t always be these bleak.

Right now, I’m in the midst of another dark depression. I’ve had a few truly dark times – 11th grade, early 2009, the Great Cymbalta Nightmare, and now. It’s bad. I’ve been playing medication roulette.

Things are bleak. Things are dark. I’m in a battle for my services. I’m in a battle for the things I need to live, to enjoy life, to have quality. It sucks. I wouldn’t wish this nightmare on anybody. And it’s the life I have. It’s the life I’ve been handed. And I don’t know why.

But perhaps one day the new dawn will come. Perhaps I’ll find hope again? Right now, I just don’t know.

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This Is Your Life, Are You Who You Want To Be?

This is your life, are you who you want to be?
This is your life, is everything you dreamed that it would be
When the world was younger, and you had everything to lose?

I loved this song in high school. Back then, I said I lived life with no regrets. This is a badly written essay from back then. VERY badly written. Read at your own risk.

This is your life, are you who you want to be? When the world was younger, and you had everything to lose.” These lyrics from the song This Is Your Life by Switchfoot, sum up how I feel about my life. I don’t live with regrets. Yes, there are events in my past that I wish I could just pull out my big pink eraser and wipe clean. So many times I wish that I could simply just snap my fingers, and shout out “DO OVER!” And yet, I can’t. I don’t believe in living life with regrets. The events of my past are the things that shaped me into the young lady I am today.

One of these events happened when I was four years old. Starting when I was three, I was diagnosed with neurofibromatosis, which is a genetic disorder. Neurofibromatosis is distinguished by having at least six café-au-lait marks (round, brownish marks) on the skin, lisch nodules in the eyes, and learning disorders. Often, other more common problems walk hand-in-hand with NF, such as scoliosis. Another “problem” with neurofibromatosis is that there is an increased change of developing tumors anywhere that there is nervous tissue.

So there I was, three years old. They knew that I had a tumor somewhere, they just didn’t know where. Dr. Annemarie Sommers, a genetics doctor at Children’s Hospital in Columbus, Ohio, finally pinpointed the tumor. I had had a urine sample done earlier that week, and she wanted to repeat it. The hormone HCL levels had completely skyrocketed. Dr. Sommers flat out said “this child is NOT leaving this hospital till I find this tumor.” They ran an ultrasound, and found a ganglioneuroblastoma in my left adrenal gland. The adrenal gland (in the words of the renal doctor) is the gray blob that sits on top of the kidney. The ganglioneuroblastoma was the fifth tumor of it’s kind, in the entire world.

And thus begin the chapter of my life that I spent in the hospital. The original plan was to take out the tumor sooner then they did, however, the anesthesiologist refused to touch me. They were afraid that my tumor was a different type, and that when they tried to remove it, the tumor would explode, sweep over my body, and kill me. Because of this, they then had to shut down my endocrine system. I spent a total of two months in the hospital, (one month, then a few weeks home, then another month).

I am extremely fortunate. I never had to have chemotherapy; I never had to have radiation. The tumor wasn’t even the kind they feared it was. On Monday, April 27th, 1992, the tumor was removed. I was so sick and tiny at that time that I was placed in the infant ICU after the surgery. All the nurses were amazed because they weren’t used to have patients that were able to talk back to them. The only reminders I have left of that surgery is the fact I only have one adrenal gland, and the large scar across my stomach that we loving call “Dr. Cooney’s Signature”, after the doctor who removed my tumor.

There are times when I wish I could change my past. I wish I didn’t have to see doctors all the time, and I wish I didn’t have to go through the surgery. However, would I go back and change it if I could? No, I would not. These events have shaped me, and molded me into who I am today. This trying event has taught me such a valuable lesson. Life is fragile. We don’t know what lies around the corner, when I could have another tumor, when I could begin to show worse signs of the disease. I can’t know what tomorrow holds.

There would be certain consequences of undoing this event in my life. If I were to go back and undo it, I don’t think I would fully appreciate life as much as I do today. I wouldn’t be able to know what a precious gift life is. Yes, life has it’s hard days, and yes, I do wish I could change some things. But I would never do it, for I like the person I am today, for I know the person I am is the person I was meant to be.

“This is your life, and today is all you’ve got now, this is your life, and today is all you’ll ever have…” More lyrics from Switchfoot remind us that today is all we have. Yesterday is “dead and over”, and so why should we worry about it? These events have formed me into the person I am, and have melded me into the person I am meant to be. Today is what I have. I don’t have the future, I only have today. And that is why I live each day to the fullest, thankful to be alive, and thankful to be living with no regrets.

 

I am older now. My old blog was called “forgotten regret”, based on the line from Rent: “There’s only us, there’s only this, forget regret or life is yours to miss. No other road, no other way, no day but today.”

These days, I feel “Will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?” is more fitting. Right now, I regret my life. Right now, I regret and wish that I didn’t live in pain every single day of my life. I don’t know what it’s like to be without pain. I don’t know what it’s like to be free from this nightmare – from this pain, from this heartache. I look at my 9 years ago self, who really couldn’t write to save her life, and think she was wise beyond her years.

Because 27 year old Nora regrets. 27 year old Nora wants to change it. 27 year old Nora is sick of the pain, of the anguish, of living life from doctor to doctor, hospital to hospital, playing medication roulette.

And I just want the nightmare to end.

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I Am From

Oh look, another corny high school poem!

I am from home-schooled mornings
sleeping all day, living in pajamas
Christian school hell-hole,
Hypocritical teachers, dress codes
(that change from day to day)
And public school walls

I am from hospital visits,
Collapsed lungs and tumors
Miracles, doctors standing in awe
Amazed that I’m alive
Shocked I’ve made it this far

I am from my beaten old stuffed animals
Now tainted with mange
Who’ve collected my tears,
And have comforted my fears,
The ones who always loved me

I am from believing lies,
Planted into my head,
Only to learn the truth
(Which truly sets you free)

I am from putting on a “happy face”,
Making others think I’m fine,
As I realize the true “fine”
Is truly showing who I am

I am from open wounds,
Which over time will heal
Then I realize that where I’m from
Isn’t a matter of where I’ve been,
But it’s who I’ll be tomorrow

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So when the whole world turns against me and I’m all by myself, and I can’t hear You answer my cries for help. I’ll remember the suffering Your love put You through… and I will go through the darkness if You want me to

I spent three years at a private Christian school. We often won character awards or fruit of the spirit awards. Without fail, I was always the one to win the faithfulness reward. The one who had a steadfast faith. Friends, adults in my life, everyone would comment on how strong and unshakable my faith was.

I am very much a cradle Christian. I was dedicated into the Nazarene church at a very young age. I’ve had a vast amount of Bible knowledge and have kicked ass at Bible trivia since I could read. Back then, I thought my faith couldn’t be shaken. Back then, I thought my faith was the only sure thing in my life.

Lately these days, I find myself becoming disenchanted with the notion of Christianity. And it scares me. I haven’t been to church in over a year. It’s sad and depressing, really. How did my once unshakable faith become so shaken?

And I find myself wondering if God is even wanting of me anymore. If God even desires me. After all, my arms have scars I created myself. I have used food as a way to hurt my body. I’m broken. Physically and emotionally. What could God want to do with me?

It’s hard. I find myself wanting to yell at God and call Him a few select names. I find my health falling apart and no one knowing why. I find my physical and emotional health in shambles.

I find myself questioning how He could be strong enough to fix me. Which is kind of silly if you think about it. Why am I questioning the one who formed me himself? I mean, hello, God sees me even when I’m pooping. If he’s okay with that, why am I so worried that he won’t take me “as is”?

Why do I question if the One who was by my side during every appointment, even if I didn’t feel Him, is strong enough? Why do I question if the One who was strong enough to give up His own, only beloved Son is strong enough to fix me?

There’s a peace I’ve come to know, though my heart and flesh may fail
There’s an anchor for my soul, I can say “it is well”
Jesus has overcome and the grave is overwhelmed
Victory is won, He is risen from the dead
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on Eagle’s wings
Before my God, fall on my knees

The thing is, my heart and flesh will fail. I’ll fall victim to my emotions, to my mortal desires, to my physical health. But there is one thing that won’t fail – Jesus blood never failed me yet, never failed me yet. There’s one thing I know that He loved me so.

I may have failures in life. I may screw up. I may watch every aspect of my health fall to pieces. I may struggle with my faith. But you know what?

It’s all a part of life.

I hear the Saviour say, “thy strength indeed is small
Child of weakness, watch and pray, find in me thine all in all.”
Jesus paid it all, all to Him I owe
Sin had left a crimson stain, He washed it white as snow

Lord, now indeed I find, Thy power and Thine alone
Can change the leaper’s spots and melt the heart of stone
Jesus paid it all, all to Him I owe
Sin had left a crimson stain, He washed it white as snow

And when before the throne, I stand in Him complete
Jesus died my soul to save, my lips still repeat
Jesus paid it all, all to Him I owe
Sin had a left a crimson stain, He washed it white as snow

Oh praise the one who paid my debt!
And raised me up from the dead

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I am the luckiest… or am I?

Luck is such a subjective thing.

I have been told, multiple times by multiple people, that I’m lucky.
That I’m lucky to not have to work. To go to school. That I have all the free time I could want.
That I can just loaf around and play video games/read/watch whatever I want.
That I get in home services, like PCA and home help. That I’m possibly moving into assisted living (well, most likely and it’s about a 95% chance).
Lucky. Sure.

I spend every day of my life in pain. Every. Day. I cannot tell you what it’s like to not be in pain.
I throw up several times a week. My weight is now officially underweight. My body is falling more and more apart. I am sick all the time. My doctors express constant concern.
I am shuffled from doctor to doctor, specialist to specialist.
I am lonely. So incredibly lonely.

I have lost friends over it. Because I can’t keep commitments. Because I “flake out”.
Because they don’t, or can’t, understand what it’s like.

I fight for my services. I fight for my medications.
I deal with providers who don’t give a shit and decide that I’m not worth seeing.
That I’m not worth working with.
That their needs are greater than mine, so they just don’t show up with no warning.

This is luck? This is being lucky?
This is what it’s all about?

I may be able to get my debt forgiven for student loans. Lucky there? A bit, maybe.
But it means I can’t go back to school. It means I won’t get a degree, ever.
It means I’m trapped in the cycle of having no purpose. 

 

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