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The day it all changed

There’s no cutesy graphic to go with this post. No Pinterest-worthy picture. My words are messy and garbled. I’m far from eloquent – not like I’m always an award winning writer. But lately, I’ve been reflecting on the day it all changed. The day everything I knew fell out from under me. The day where my hopes and dreams were shattered.

May 9th, 2011. Almost five years ago. My first back surgery. July 9th, 2013. The second back surgery due to complications from the first. But the May 9th surgery shattered everything. It changed. My life changed. My world was turned upside down. 

My life became more pain. More questions. Less answers. More specialists. I have an impressive scar down my back and a straighter spine but at what cost? 

Three years later. May 9, 2014. It was supposed to be the best day of my life. My college gradatuon. Didn’t happen. Due to that back surgery. 

And now. Two years later. 

I am broken. 

I am hopeless. 

I have no college degree despite spending six years in undergrad. I am drowning in debt. I’m trying to get them forgiven but loan people are butthippos. 

I am trying to find a purpose and meaning in my life. Is it my blog? Is it activism? Is it being an advocate? Is it anime conventions? 

I was a semester and a half away. 

I graduated high school ten years ago as of June 2nd, 2016. I expected to be drowning in debt but in a Ph.D. program. Nope. 

Instead here I am. Ten years. Five years. Two years later. Trying to aimlessly find a meaning. 

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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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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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The Impound Lot Adventure From Hell

Image description: Me, a pale brunette wearing a purple sweatshirt and Anna, a pale blonde wearing a tie-dye shirt, both smiling at the camera.

Image description: Me, a pale brunette wearing a purple sweatshirt and Anna, a pale blonde wearing a tie-dye shirt, both smiling at the camera.

My best friend Anna and I have known each other for around fourteen years – which equates to almost half our lives! Our friendship started out online – we were both members of a Christian youth message board. In 2008, we had a convo around these lines:
“I’m going back to college this fall!”
“Yay, so am I! Where are you going?”
“Ye Olde Christian College.”
“REALLY!! SO AM I!”

 

After we both got to Ye Olde Christian College, we were hanging out together in the student center. After mention various message boards and various user names, we found out that we had actually both been on another message board together before and had indeed interacted. I like to say we knew each other before we knew we knew each other.

Anna and I are more like sisters than friends. She’s certainly my best friend. She’s the one who can read me like a book. I can say “Oh, it’s the thing that does the *hand motion and sound effect*” and 99.9% of the time, she knows what I’m talking about. She accepts who I am with my weird like for Disney songs in languages I’ll never understand and doesn’t think it’s silly that at age twenty eight, I still watch Sesame Street (because she does too!).

Image description: Me wearing a sock monkey hat and a Muppets t shirt, sticking out my tongue and Anna wearing an Elephant hat and a bright orange Northwestern Eagles T-shirt. She is grinning at the camera.

Image description: Me wearing a sock monkey hat and a Muppets t shirt, sticking out my tongue and Anna wearing an Elephant hat and a bright orange Northwestern Eagles T-shirt. She is grinning at the camera.

Before you think this is merely a sappy entry about my best friend, it isn’t. It’s about something that is a HUGE problem in today’s society. It’s a problem I face every time I leave my apartment, and something Anna faces whenever she goes out with me.

 

You see, I am physically disabled. There are a lot of things I cannot do for myself. I can take care of my basic needs. I can walk, although I use a walker or crutches most days. Anna drives us places, because since I am legally low vision I cannot get a license. Anna has spent long nights in the ER with me, has driven me to doctor’s appointments when my ride failed yet again, and has been at the hospital with me through two surgeries. She’s helped me clean my apartment when I’m too sick to and she’s even sent me pizza when I’m too sick to cook.

 

But here’s the thing. Even if I wasn’t disabled, Anna would still do these things for me. She would still help me. Yet time and time again, so often when people see us out and about, they tell me how lucky I am to have a friend like her. To her, they put her on a pedestal she is not comfortable with. And the way they word it implies that I’m not capable of doing things with her. I am, oh, how I am. I present with you, Exhibit A: or what we affectionally call “The Impound Lot Adventure from Hell.” The scene: A cold Minnesotan winter.

 

We’re Minnesotan, so it gets hella cold here. And it snows. So, we moved her car so they could plow the lot. To make a long story somewhat shorter, her car got towed. Her parents lived roughly forty minutes away and we have no local friends to call, so we’re like “Okay. We’ll take the bus. It won’t be that bad.”

 

Yeah. “It won’t be that bad.” Famous last words. First, we got off at the wron

Image description: Anna, wearing a purple coat and black pants and me, wearing a black sweatshirt and jeans, while leaning on my Christmas light (!!) crutches. We are standing outside in the winter. It is snowy. We are in front of the college dorms at her first college.

Image description: Anna, wearing a purple coat and black pants and me, wearing a black sweatshirt and jeans, while leaning on my Christmas light (!!) crutches. We are standing outside in the winter. It is snowy. We are in front of the college dorms at her first college. Picture is from several years ago (2010, I think?), so we both look younger.

g stop and had to wait for the next bus to loop back around. Did that. Got off at the “right” stop. Walked the wrong direction. Walked back the right direction and to the impound lot (three miles in all). I was sick, I was in pain, it was below freezing, and just all around miserable. At that pound, my cell phone was completely dead and I don’t remember if Anna had hers with her. We get to the impound lot and surprise! wrong lot. We were both near tears at that point and I finally told Anna to just hail a cab. So we do and we get to the right lot. Then either her card didn’t work/they didn’t accept debit card/something like that so we ultimately HAD to call her parents to bail us out. We then went home, had pizza, and drank Mike’s Hard Lemonade.

Here’s the thing. That’s not the only time I’ve helped Anna out, though that’s the most memorable. I’ve been the person she’s vented to. I’ve been her support person when she’s gone to places that have been difficult. I’ve helped her sort through stuff. I’ve helped her figuring out adulting – such as bills, student loans, insurance, all that fun stuff. She doesn’t help me out because she feels sorry for me for being disabled or because she feels she has to. I don’t help her out because I feel I have to in return. I do it because we’re friends.

 

We aren’t friends because I’m disabled. I don’t go above and beyond for her because I feel I have to in return for things she’s done for me. I mean, that would be as silly as saying we’re friends because I took pity on her for being blonde when I’m a brunette. We’re friends because we both love Sesame Street, Harry Potter, and Lord of the Rings. We’re friends because we both love to read – Chris  Crutcher is our favorite. We’re friends because we make random sound effects as we go about our day to day life. We’re friends because we have similar political beliefs. We’re friends because we have countless inside jokes. We’re friends because we can read each other like a book. We’re friends because we’re both fiercely stubborn. We’re friends because we can sit in the living room without saying a word both on our laptops, and it’s not awkward. We can drive somewhere and the car can be silent, and it’s not awkward. We’re friends because she’s compassionate, caring, hilarious, and one of the most loyal friends I’ve ever had. Anna has seen me at my best and my worst, and she still chooses to be my friend.

 

 Now, we are lucky and blessed beyond measure to have each other. Not everybody gets to have a friendship as beautiful and fun and wild and amazing as ours, and that in and of itself is amazing. We are lucky, in that regard, to have found the perfect friend for us. The person who knows us so well. But the reason we are lucky and blessed to have each other isn’t because I’m disabled and it isn’t because she helps me out. The reason we are lucky is that in this world, it can be so hard to find good friends that you WANT to keep in contact with, that you WANT in your life. And we both found that person in each other.

Image: Me, wearing a blue t shirt and a hat and Anna, wearing a purple Birkie t-shirt and holding the koala I got her in Adelaide. We are both smiling at the camera.

Image: Me, wearing a blue t shirt and a hat and Anna, wearing a purple Birkie t-shirt and holding the koala I got her in Adelaide. We are both smiling at the camera.

Crux of it is, if you wouldn’t say it to an able bodied person, don’t say it to me. Don’t say I’m lucky because xyz if you wouldn’t if I was able bodied.  Don’t tell me I’m lucky to have such a wonderful friend, because I know full well how lucky I am. I wasn’t the kind of kid who made friends easily when I was younger and I’m so beyond grateful to have friends now. I’m so grateful to call Anna a part of my family of choice. But I am not lucky to have her merely because I’m disabled. That’s ableist, and demeaning to our relationship. It implies that she only gives and I only take, when we BOTH give and we BOTH take, though sometimes one of us does more of one or the other for awhile before it flips back over.

 

We are lucky because in this wild world, we have such a loyal friend.
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A difficult pill to swallow 

Recently I had my reassessment for my state waiver that pays for my in home services. It’s always a difficult time of year. In some ways, you want to fail the assessment because it means you get the help you need. In other ways, it’s disheartening to gradually with your health fall apart.

I had been assessed in 2013, and was deemed to not need further care after my back surgery. By fall of 2014, I had been accepted into the waiver program and fall of 2015, my services were even further extended. Anyone who knows me will tell you I’m fiercely independent,   stubborn enough to give a mule a run for their money, and have an irrational hatred for asking for help.

But I now have multiple providers coming to my home a week. And while part of it is a relief that I’m not juggling everything on my own and I have the help I finally need, it’s so incredibly hard to accept that age 28, I need nursing home level of care. It’s terrifying that I’m so young. So many fears play tag with each other in my head – will things get worse? Will I need actual assisted living? Will I ever improve enough to get the degree to be a hospital chaplain that I’m just one and a half semesters away from? At that, will I ever get the seminary degree I outrifht covet at this point? Above THOSE, will I ever get a job?

My renewal paperwork also stated that I don’t want to work. That’s the furthest thing from the truth. I find that it’s those that actually cannot work that desire to work the most. I would love to have a job. I would love to have a life outside of video games and Facebook and movies. It isn’t how I saw my life 10 years ago, as a senior in high school.

But I’ve come to realize these aren’t the things that define me. The fact I have a great need for care doesn’t mean there aren’t things I still can’t do for myself. The fact that I cannot work does not mean I am not a productive member of society. And the same goes for you if you’re reading this. You’re not a failure if the most productive thing you do today is get up and go to the bathroom. You’re not a burden on society if you need extensive in home care.

You’re still funny, beautiful, and enough. Some days, it is enough just to say “I woke up this morning and I made it through until evening.” Some days it is enough to say that yes, I had extensive supports today but they helped me make this day the best I could. Some days it is okay to say that wow, today sucked and was the worst day in a long time, but I made it, and that is enough.

It’s a difficult pill to swallow. It’s difficult to leave my hopes and dreams behind. But instead of leaving them behind, I’ve watched them morph into something new and something I still never dreamed of. And that’s what life is – making the most of the unknowns and going forward every day.

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call it torture, call it university

Nine years ago in June, I graduated high school. I was by all means a smart kid despite my dismal SAT scores (I don’t test well due to various learning disorders) and I had high hopes for my future. I graduated with honours – it should have been high honours but one of my teachers didn’t turn his grades in on time so the program only listed me as honours. Anyway.

I always thought that by now, I would be graduated with both my undergraduate and my master degree. I had such BIG PLANS for my life. I was eighteen years old, about to turn nineteen. I had no idea how badly my attempts at college would fail. I had no idea what a nightmare I would make of it all.

I withdrew from college for the final time nearly a year ago and I’ve come to terms that I may never graduate. And it’s HARD. I want so badly, so desperately to go back. I still dream of it. I dream of going back. I dream of graduate school. I dream so badly of becoming something worthwhile and instead, I live at home with my cat. I’m on disability. My live is instead doctors appointments instead of doing SOMETHING with my life. And it scares me that I may never amount to anything. That I will be nothing for the rest of my life.

 

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Remember, remember, the ninth of… May?

May ninth is kind of a shitty day for me. Four years ago today, I had the first of my back surgeries. One year ago today, I was supposed to graduate.

I didn’t graduate. And my back surgery hurt. Recovery was a bitch. It resulted in a second surgery two years later that I still haven’t fully recovered from.

And not even a year after that second surgery, I withdrew from college. Possibly to never go back. Only a semester and a half away from graduation – I was set to walk in the May ceremony and officially complete my degree in December.

It didn’t happen. And it’s hard. And it sucks. Some day I dream of graduation – some day I dream of going back. But right now, with my mental and physical health, it just isn’t an option.

And it’s just…it’s heartbreaking that one day hold so much for me. I wish I could pretend it doesn’t exist. I wish I could just throw my arms in the air and give up. Because I’m sick of this pain, physical and mental. I’m sick of the way things are.

It’s not what I hoped. What I dreamed. What I wanted. My life is so far away from that so called ideal… and I hate it.

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it was a year ago

It was a year ago.

It was a year ago that I turned in my laptop. That I turned in the paperwork that put me on medical leave.

It was a year ago.

That I was only one month away from graduation – though I still had fall semester ahead.

It was a year ago.

When I realized that my health was completely falling to shreds. That no matter what I did, I would never be healthy, I would never be healed, and my dreams were crushed.

I feel I have nothing to show for this year. Video games beaten? Anime watched? Movies memorized? It feels like such a profound waste of a year

I feel I have lost a year. That I’ve wasted days away sick. That I’ve just been a lazy, stubborn, stupid idiot mooching off whatever. Irrational as it sounds, that’s how I feel. Because my health is slowly getting worse. I am massively in debt for a degree I will never achieve, for a job I will never have.

10 years ago this autumn I entered my senior year of high school. I expected to have my master degree by now; I expected to have a job.

And yet I am nothing.

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And if that’s luck, it comes at much too high a cost

So many times in my life I have been told that I am lucky. That I am lucky to be living on SSI and not have to work or that I’m lucky to be able to just stay in bed all day. If only all those people who told me how lucky I am knew the price it came at. If only those people who told me how lucky I am knew what the cost was of being this way.

There are days where yes, I am in bed all day, but I am in too much pain to read, to play a video game, to even get on my laptop or the tablet. There are days when I am in so much pain I can barely interact with my cat. And yes, there are days when I just stay in bed reading or playing on my laptop…but those days I also have to choose between having enough energy to get up and eat or get up and use the bathroom. Is that lucky? I don’t know.

I may be able to get all my student loan debt forgiven. Again, lucky? Maybe – I am grateful for that. But the price would be that I am far too disabled to work, to go to school, to have a productive life. I may be living on SSI and not have to work, but I’m not physically able to work. It isn’t even an option for me.
In college, I got told that I was lucky to get extended time and extra class skips. I was lucky to have professors who, for the most part, worked with me. But really? Lucky? Lucky to wake up in so much pain I can’t move, or even cry from pain because it hurts too much to cry?  Lucky to not know how much I will be able to function when I wake up?

I know most people don’t understand. They can’t. And I don’t think they realize how much simple words can hurt or the weight they carry. But it doesn’t change how it makes me feel. And it doesn’t change how terrible it is to have the world think you’re lucky, when in reality it takes every amount of effort to get through each day.

I may be lucky, but it comes at a price.

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Ministry Major Malaise

I wish that I could write a post that fully shows how much depression sucks. I wish that there was a way I could let you take a peek into my world and what it’s like living in this world. A world where you don’t trust anyone, lest of all yourself. A world where it’s like you’re reaching and grasping for something, a shred, a spark, but perhaps it just doesn’t exist. A world where it feels like a game of Jenga, and that you never know if the next block being removed will cause you to wobble, collapse, or stay sturdy.

But yet, I’m taking a break from writing about depression to try and write about something else. Because it all interlinks together. It all fits together, somehow, someway. It all overlaps and it’s all a part of the same puzzle.

I’ll be honest, I haven’t talked a lot about my week at IHOP. How it completely shattered my faith. How in so many ways, it screwed up how I view God. How it completely broke me. How it played mind games with me. How I went on such an emotional roller coaster. And frankly? I feel stupid! HOW could one week, “onething”, affect me so deeply? It was just a week, for God’s sake! There’s no reason it should have shattered my faith so badly, that it should have so badly demented how I see God. There’s no reason, and I beat myself up constantly for it. I know who God is. I know logically, I know all the facts, but convincing my heart to believe what my head knows is a struggle.

I find myself on the brink of self injury. Why, you say? Your scars are fading. You’ve been free for so long. Why would you throw all that away for just a few moments of solace, of false serenity, of bittersweet relief? IT HELPS. It lets me out of my inner hell, my inner demons, for just a little while, and that is help enough. It’s not worth it in the long run, but sometimes we do things that aren’t worth it in the long run just because we don’t know better. But no, how dare I ruin God’s temple. How dare I screw up the gift God gave me. How dare I turn to myself! I’m a pathetic excuse for a Christian because allegedly His blood was enough so I don’t need to shed my own. (You will see how this relates, I hope, and this paragraph isn’t just random).

I’m struggling to keep my head afloat. I’m struggling to keep normal sleep patterns, eating patterns, living patterns. I find myself escaping to books, video games, TV shows, and movies just to try and get a break from my brain, from my crazy self. And what I hate the most? Several years ago, I’d turn to God. Several years ago, I’d pray. Several years ago, I’d find refuge in my faith. And now I don’t. Now my faith, the very thing I’m studying in college, the very thing I desire more than anything to do with my life, is what is scaring me and plummeting me deeper into the pits of despair. I find myself angry at God: angry at Him for allowing that week, angry at Him for allowing all the hellish moments of my life. Then I get angry at myself for getting angry at God because who am I to be so angry at Him? I find myself angry from events at old churches that shook, shattered, and tore my faith to shreds. I find myself furious of what people do in the alleged name of God, the horrible hurtful things they do – some intend to hurt, some because people are just sometimes dunderheads.

And yet, I hurt myself. Because I see how I am not worthy. I see how I am a bad Christian, and maybe all those terrible lies I believe in reality are true. Maybe there’s a reason I went through those various church and ministry-place-related struggles, because they’re the truth. Logically, I know that’s a bunch of bullcrap, but who said my brain is always logical?

And worst of all, I’m terrified. What if I make some mistake in the ministry? What if I totally screw someone up, shake their faith, tear their soul to shreds? How would I ever live with myself? What if I mess someone up as badly as I was messed up? Am I being rational? Am I irrational? Would I have these fears if it were not for how badly I’ve been hurt “in the name of the Father, Son, and Holy Spirit?” What would church pastors say to me? What would fellow Christians say to me? What would atheists say to me?

It’s difficult. I’ve been hurt in so many ways, by so many people. And an age-old saying is “hurting people hurt people.” What if… what if I hurt someone? What if my hurt ruins someone else? Is it just a vicious cycle that will never be ended?