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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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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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A letter to my younger self

Ten years ago today, I made one of the most difficult decisions of my life. I’d rather not go into specifics because it’s still painful and this blog is public. But suffice it to say it was hard and forever changed my life.

Image is of me, roughly 10 years ago. I am sitting outside a brick building. My hair is in pigtails. I am wearing a pink Nike sweatshirt, jeans, and grey sneakers.

I wish that ten years ago, I could see where things would be today. I wish that I could have seen how different life would be. How in some ways, it would be so much better in ways I could have never hoped on dreamed. In other ways, it would be so much worse.

 

But my younger self was so naive and there was so much she didn’t know. She didn’t know that while she had few friends then, she would have so many more friends ten years later. And so, without further ado, here is a letter to 18 year old Nora.

Hi Angelique,

It’s Nora. It’s ten years later. I’m you. Yes, you are no longer really going by Angelique. It’s okay. You finally found a nickname you like and it has stuck! Isn’t that great that you have a nickname and friends to call you that?

Oh, friends. In a couple years from now, you’ll meet Beth and she’ll become one of the most important people in your world. She will die and you will be heartsick, but don’t let that stop you from loving and living. She is worth it, I promise. She’s worth every moment of that friendship. Cherish it more.

You’ll go to Australia. Yes, Australia! I know you never thought that would be possible. But you will! And you’ll do it alone and succeed.

You won’t graduate college. You’ll try and fail, try and withdraw, try and medically withdraw. It doesn’t mean there’s anything wrong with you. It’s okay that your life now isn’t what you pictured it would be back then. It’s okay that your life is something totally opposed to what you wanted it t be.

You learn to do a lot on your own. Your dad dies, your mom lives in FL, your brothers live in OH and FL. You do a lot on your own and you learn to rely more on friends. You learn that you don’t, truly, have to do everything on your own.

Your health declines. You get the alphabet soup for physical and mental health disorders. But that’s okay. You learn to advocate for yourself. You find friends who help advocate for you. You love deeply, trust deeply, and live freely. And even though your life looks nothing like you planned – after all, you planned for the alphabet soup to be after your last name and not a part of your medical chart, it’s still beautiful and wonderful.

You make some of the best friends you could have in the world. They live all over – New York, Georgia, PA, North Dakota, Minnesota, Iowa, California. You find people who understand your weird self and share a love for Disney. PS, you become obsessed with Pokemon. Be aware.

But Angelique, your life gets so much better than you ever imagined it could be. So right now, enjoy being 18. Take the curve balls life throws at you. Because it’s going to get better. I promise.

Image is a photo of me, ten years later. I am standing outside and striking a pose. I am wearing a green sweater, a teal fluttery top, a blue, teal and purple tutu, and brown fleecey tights. I also have on silver shoes, a flowery/buttefly crown, and purple and green butterfly wings.

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Life is what happens to you when you’re busy making other plans

14462e1a6b31656182422961e934e157It wasn’t so long ago that I was in high school. That I graduated high school despite incredible odds. That I even graduated with honors (though it should have been high honors as I got an A in creative writing but my teacher turned in his grades late so that’s not what the graduation program says.

Despite learning disorders, despite that being the year I turned my father into the police, despite that being the year my health completely fell apart, I still graduated high school. Even now, nine years later, it’s one of my proudest achievements.

Nine years ago, I had so many hopes and dreams. I wanted my PHD. I wanted to do something with children. Never did I think my health would continue to spiral downhill. Never did I think that in 2007 I would be approved for SSI in less than a month. Never did I think that my father would die at the age of 66. Never did I think that in 2015, I would still not even have my bachelor’s degree.

I’ve come  to accept that life isn’t always what we want. Even though I have an incredible amount of debt from my college education that was never completed, I truly don’t think I’d trade it for the world. I would have never met Nick. Anna and I wouldn’t be as close as we are. For all I know, I wouldn’t have Athena. Life happens. It’s not always what we want, but it’s all what it’s supposed to be. Somehow.

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Journey from the past

I have a really old LiveJournal. It’s from back when you still have to be referred to join. I also have (multiple) really old Xangas. And a few open diary/teenopendiary which thank GOD do not exist anymore. This is kind of a trigger warning for child abuse, so, please tread carefully. This is mostly me doing some dumping of various sorts – I don’t know that I even expect anyone to read it. If you actually do, hugs and good thoughts are welcome. This was hard. If you want the good stuff, go to the end where I gave the asshole a piece of my mind.

Some of the stuff made me cry. Like, I actually wrote that? It’s out there? Parts of my childhood abuse are that well chronicled? Me talking about getting yelled at for making a mistake that caused my father to reboot the computer. I found this entry and I was so heartbroken at junior year, overdramatic me. This is from when I was 17.

“Got it? I quit life. I’m sick of it. I asked Dad to call the doctor, so
I can get my meds, right? He throws a fit, becaue he doesn’t think I
have a problem and need them..then asks if I think I do. Now, the ones
they had me on worked like CRAP. But now I don’t have any…and I’ve
noticed in the few weeks since I’ve been off…I’ve been more down.”

Why do I always have to suffer? And the other day, I just wanted my
daddy to notice me. I showed him my new pretty bracelet, but he was too
busy playing fucking neopets. Yes, I just cussed. Live with it. I was
so hurt, that a DAMN WEBSITE was more important then his own daughter.
It’s all he does! He literally RUNS down the isle at church as soon as
it’s done, and I have to struggle to keep up with him. Why does he go
so fast? Because he wants to come home and screw around on the computer
before work. We hurry to leave after Wednesdays. And I hate it. I wish
i’d NEVER told him about neopets, I’m sick of hearing him whine when I
get good stuff, and he doesn’t. I’m sick of him bragging when he does
good. I’m sick of it being the only thing we hvae in common to talk
about. I’M SICK OF IT. I made the biggest mistake of my LIFE when I
told him about that site. I just want to slap him and tell him it’s NOT
REAL, and that hey, I’m real. And all I wanted was some attention..for
him to notice the bracelet I’d spent time making, and I just wanted him
to acknowledge me. I just wanted him to see me. What the hell is he
going to do? I’m going to be GONE in a year and a half. And I can’t say
I’m upset about it. I’m looking foreward to it. I’m to the point where
the further away I get from home, the better.”

And yet, I was gone before that. Oh, I got emails. The blackmail emails. Cruel, cruel posts.

“This was the year that you were to get something (for Chirstmas) of your grandmother’s that she would have wanted you to have, but no. Jim and I will sell it. Also, my will said you were to get the imported china that dad brought back from Japan at then end of WW!!-but that is now changed. Jim and I will sell sell it.”

“Just to let you know-You and and your mother had many choices as to what to do. You both chose to take the road that would cost the most problems for me. Giving you the comuter finalizes my agreement with the police department. I am now forced to pay for slightly over year for something that I do not have, and all because of the phone call your mother made-instead of any other choices available. This whole thing was cost me dearly, $$ and more. But tell your mother that it is not it is not over until the fat lady sings, and she has not yet sung.” (What did I do? I turned him into the police for possessing child pornography. And by the way, my mother did not make the phone call. I. FUCKING. DID. And like 18 year old me was going to confront him!? I did do other things, douchebag. I went to my youth pastor and the senior pastor of the church, who tried to convince me not to turn his sorry ass in and instead ‘confront’ him. HELL NO).

I am sorry, but I am done. I have done everthing in my power to contine to communicate with you, but it is you, not me, who has shut off everything. Again, if you cannot communicate with me, I feel I have no other choice than to discontinue your insurance coverage.” Why did I shut off everything, oh yeah, you’re a fucking child abuser.

Oh, and then there is the time at age 20 I finally epically lost my shit at him and gave the asshat a piece of my mind. This is the email, and this is my response. The check was some insurance bullshit.

I cannot send a check out until next week, and WILL do so then.

Just to let you know, I do NOT remember any check for this amount, but to avoid problems, will send it anyway. I have asked, repeatedly, to see you, but get denied every time. You do not, and cannot possiblly have a Dr appointment every day. And, almost every mail I receive from you seems to be a request for money.

I don’t know what happened–it cannot be just what happened over the computer. You were my very best friend, and I felt, before you left here, I could confide in you just about anything. There are still things I wish I could talk to you about. But e-mails are not the place.

I love you very much, but things just can’t go on the way they are now.

I am asking you one more time–can I PLEASE just have a time when we can meet one on one–just for lunch? Any day–any time–up to your to set the time. I am still off on both Tues and Wen.

Dad”

“Thank you for sending the checks.

No, I do not have an appointment every day. However, since Mom is off on Tuesdays, I normally have them on Tuesdays. Wednesdays I’m in class all day. So neither day works for me, sorry. I barely have the strength lately to hang out with my friends, I’ve only seen one of my friends this entire summer. Between school, doctors, and homework (and getting ready to transfer next year) I doubt if I’ll even have time to hang out with them at that. I’m sorry. I also cannot make plans very far in advance, as I never know when I AM going to have an appointment. I am lucky enough to be able to attend class each week, nonetheless make outside plans.

“Best friend”, eh? You sure have funny ways of showing it.

You said in an earlier email I was not the daughter you knew. You are correct. I am not the daughter you knew. I am no longer your victim – I am no longer your punching bag to push around. I am no longer the person you forced me to be. I am stronger, I am wiser. You put your earthly possessions over me. Therefore, you lost me. It’s not my fault. YOU made the choices. YOU have to suffer the consequences.

While I lived with you, you never cared about how I was doing. You would throw fits when Mom asked you to take me to my doctor’s appointments. You didn’t care about my eighteenth or nineteenth birthdays. You’d whine and throw fits whenever I asked you to do anything for me. Why the change? Why do you care about my health now? You never gave a rat’s behind before. So why now? Why the sudden burst of compassion?

No. Things cannot go on the way they are now. I am sick of you pushing me around, trying to force me and guilt me into meeting with you. I’m sorry. I cannot. Besides, what would we talk about if we met for lunch? You only care about one person – you and what makes YOU look good. You’re not interested in my life. You never cared in the past. Why should you care now? Have you realized what you’ve lost? Have you realized what you’ve done?

I’m sorry if every email seems like a request for money. However, when you were married to my mother, all you cared about was HER money. All you care about is money, and making sure you have the money to buy your beer and your potato chips. You never cared if I had the money to buy my medications, the money to buy things I needed for school, the money to pay for gas to take me to my doctor’s appointments. You couldn’t be arsed to care. So why care now?

Yes. It is more than the computer. I’m glad you finally realized that. I have finally seen your true colours. It’s the way you treated my brothers. It’s the way you treated my mother while you were married to her. It’s the way you treated me. I am not your toy to play with. It’s your utter hypocrisy – acting one way in public, and another behind closed doors.

You truly don’t care about me. Case in point. When you were in a car accident, and unhurt, you got pissed at me because I didn’t say anything. I’m sorry if I hurt you in that, but you have hurt me in the same ways. I’ve told you I’ve been transferred by lifesquad from the doctor’s office to the hospital – nothing. I’ve told you of my multiple sprains – nothing.

You pay no attention to my emails. I told you in an email I’d sprained my ankle. Your reply? You wanted to take me to play mini golf, out to a movie, and a Chinese buffet. All of which is awfully hard to do with a sprained ankle.

You say I am not the daughter you knew. You are not the father I knew. The father I knew would never disrespect his mother. You know, my Christmas present in 2005? Where you told me you were going to sell something that Dixie would of wanted me to have? I thought you truly cared – but I guess I was wrong. Sometimes we are blinded by the people we care about the most, and the same is true of you. I realized that the “love” you claimed you had for me was just an act. You’d throw fits when I’d ask you to do simple things like take me into town to get my glasses. To get my TB test read. The father I thought I knew would never do that – and that is when I started seeing your true colours.

Whenever something goes wrong in your life, you expect me to show pity, compassion. Fine. I can understand that. However, when something goes wrong in my life – I get nothing. I’m not saying I want your sympathy, I’m not saying I want your pity. However, you can’t expect me to care if you don’t.

You have hurt me in more ways then you will ever realize. Not just by the computer, but by a combination of things. Your choices led us to where we are now. I’m sorry.”

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Jesus loves me, loves me still. Though I’m very weak and ill.

A few years back, I was asked if I thought God created me to be disabled. First off, this is a horribly offensive question. Secondly, it came from a quack chiropractor to whom I promptly gave a piece of my mind. Years have gone on since then. I’ve had three operations. I’ve withdrawn from college. My health has completely fallen apart. And I question it.

Why DID God create me this way? Why AM I so broken? Is there any purpose for the pain? I wonder why he let me be like this. I wonder why I couldn’t have a working body. Why I suffer from an array of disorders. Most of the time, I feel I can accept and own my disabilities. But there are times when I question it. When I question why. When I don’t understand. When the doctors are hunting for answers.

I wish, oh, how I wish that I knew. I don’t know that I fully believe what I find off at Ableist Assmonkey Doctor. I don’t know how I feel about this in general. I don’t know why. But I do believe, that for whatever reason, God created me this way. I don’t know what he’s reasoning is, but I know it’s greater than mine. I don’t know why he thought I was strong enough to handle it, and frankly there are days I don’t know that I am. “God doesn’t give you anything you can’t handle” is 100% bullshit, but that’s another rant for another entry.

I don’t know. I don’t know why. I don’t know how. But what I do know is that His plan is better than mine and His vision is better than mine. In high school and middle school, I was often awarded Faithfulness awards for my steadfast faith. My faith has shaken. My faith has been shattered. But I always come back around. I know that God has a plan that I don’t – even with my disabilities.

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, oh, but fall I must
On this truth that my life has been formed from the dust

God is God and I am not
I can only see a part of the picture He’s painting
God is God and I am man
So I’ll never understand it all
For only God is God

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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