0

Can you imagine?

So many people have told me how lucky I am.

Can you imagine it?

Imagine having all the free time you could dream of. It sounds like a dream come true, doesn’t it? Can you imagine?

But at the same time you’re always tired and never sleepy. You’re always exhausted and you’re either sleeping forever, or incapable of sleeping.

Can you imagine?

You have all that free time and the world is your oyster… but yet you’re in too much pain to pick up the TV remote to turn on Netflix.

Can you imagine?

I have NF1

Today is NF Awareness Day.

Even the city of Minneapolis  has decreed it so.

Can you imagine?

Imagine being fucking terrified every time you go into the simplest doctor’s appointment, because you never know if another surgery is on the table. Imagine your blood running cold the moment your body has decided that one again, you’re atypical and body, you REALLY should read the textbook because you’re doing the things you shouldn’t do and I don’t WANT A TUMOR, dammit!

Imagine it.

Imagine having no cure. No treatment. Just random drugs or surgeries or therapies thrown at your body like a game of Russian roulette. If you’re lucky, it works like a charm. If you’re me, it works with side effects.

Can you imagine?

Imagine over a dozen medications running through your veins to keep you alive. Not pain free – no. You are in pain every day of your life. You don’t know what it’s like to not have pain. Imagine even more comorbid disorders.  Just imagine it.

Can you?

Am I so lucky now?

Am I so blessed to have all these free time when it’s because of my disability?

Imagine being called amazing. Inspirational. Incredible. For doing things that non disabled people do. Can you imagine it? Can you imagine crying yourself to sleep at night, because you’re TERRIFIED of your next visit to the doctor? Can you imagine dreading getting out of bed, because you’ve finally gotten somewhat comfortable but you know the slightest movement will bring all your pain back?

Can you imagine doctors not knowing what the hell you’re talking about, despite the fact your genes are one in every 3000 births? NF is more prevalent than  cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined.

Am I so lucky now?

I would be honored if you made a donation in my name to help fund NF research. Every dollar is matched during NF Awareness Month

If you are an Aussie, you can donate here. If you are in the UK, you can donate here

0

It’s prom season

It’s prom season.

Which means soon the media will be blasted with stories. Which means soon disabled people are once again turned into inspiration to make others pat them self on the back and feel like such a good person! Which means once again, disabled people are turned into inspiration porn.

Before you share one of these stories, ask yourself these things:

Is it about the disabled person, or is it to glorify the person who was ever so kind? If it’s the latter, don’t share it.

Is the disabled person actually given a voice in the interview, are they actually spoken to or are they spoken about/around? If it’s the latter, don’t share it.

Would you share it about an abled body person being invited to prom? Then DON’T FREAKING SHARE IT.

As a disabled adult, I would be appalled to find out someone invited me to an event (I’m too old for prom and actually never went) just because they felt sorry for me. I would be horrified to find a media story talking around me or around me but not TO me.

We don’t exist to inspire you.

Have a nice day. Glad we had this convo. Think before you share. Think about the reason you’re sharing.

Image
0

Do you know what ableism is?

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

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

 

 

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

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

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

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

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

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

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

 

Image
1

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.

0

More than a choice

“I could never do it.”

When your options are to fight like hell against a world that actively oppresses your existence or to sit in solitude and silence, I choose to fight.

When your options are to join hands with fellow activists and advocates to make a difference in a bleak, dark world or to sit on the sidelines, I choose to join hands.

When your options are to call people out on their ableism – be it passive or active or allow another victim to be hurt, I choose to call you out.

When your options are to kick the hell out of everything that kicks the hell out of you or to allow the kickers to continue to kick, I choose to be the one kicking.

I say “choose” like it’s a choice. It isn’t, really, It’s something I just did. It’s something I threw myself into. I didn’t do it to make a name for myself. I didn’t do it because it’s fun, although sometimes it is! I didn’t do it to make friends, although I sure as hell did. I did it because the alternate wasn’t appealing.

I live in a world where being autistic is actively oppressed. Stop doing this thing. Start doing that thing. You’re embarrassing me. Make eye contact (I don’t care that it physically hurts you and it isn’t possible! LOOK AT ME!). Your interests aren’t valid. You’re not like my child. But you’re so high functioning – despite the fact I lack the executive function to wash a dish or to safely boil a pot of water (seriously, I once melted a blender. It was sort of epic).

I live in a world where people think I’m a drain of society. In any given years, I rack up tens of thousands of dollars in medical bills that could be better spent on “healthy people”. I take dozens of medications a day. I have a list of disorders that makes doctor’s eyes fall out of their head when they see the sheer length and it seems it’s added to monthly. I live in a world where my access needs are not meant, and that’s considered okay.

As long as I live in a world like this, I really don’t have a choice. You tell me that you could never do it.

But I could never not.

0

When your right to vote is taken

I have read, many times, that if you don’t vote, you lose your right to complain. I have read that everyone should vote, no matter what. I have read that if you don’t vote, it is your fault if things don’t go how you want. But the thing is, not everyone is able to vote. Voting is extremely handicap inaccessible.

Now, many states will allow you to vote absentee, which is amazing. However, I live in a caucus state. This means I not only have to vote in person, but I can only show up at certain times. I wasn’t able to vote in the primaries, because they are not handicap accessible.

I have a weak immune system. Some of my IgG levels? Almost non existent. Even though we’re near the end of flu season, I catch everything. The sheer number of people all at once? It’s a recipe for Sick!Nora. Which isn’t something that anyone really wants. I am autistic and I have general anxiety disorder. Loud noises, a slew of people, it’s a sensory nightmare. It isn’t something that I am capable of handling.

The lines are long. While I am lucky and have a walker with a seat, not everyone with mobility impairments does. At the end of the day, I wasn’t able to vote because the caucus isn’t accessible for us. When will we be able to vote? Why are the voices of some of the most passionate silenced, because they simply cannot get out to the caucus? It shouldn’t be legal, and yet it is. We are forced to be silent.

2

If the fact I’m calling it porn bothers you….

If I say the words inspiration porn, what offends you more? Does the fact that disabled people are objectified bother you, or does the fact I call it porn?

Porn is a deliberate word choice. The late Stella Young addresses it here, and you can also read it about here, here, and here. That should cover the bases quite well and give you plenty to think of. So why am I writing my own post when there are so many out there?

Because lately, I have seen a lot of comments that we shouldn’t call it porn. That is what’s offensive. People aren’t upset about disabled people being objectified.

Want to know things that have gotten me called inspirational, so-high-functioning, etc? Well, you’re in for a treat!

 

You see, the AMAZING AND INCREDIBLE NORA, who is SO TALENTED, once got a Dr Pepper from the freezer at Walgreens. I know. You are kneeled over with shock. That is, my friends, inspiration for a young lady with crutches to get a Dr. Pepper. No, I’m not inspirational. I just haven’t had my daily caffeine and the true inspiration is me not going kung fu crutch on your butt.

I’m called inspirational because I graduated high school despite major disabilities.

I’m called inspirational because I attempted college. No one seems to realize I’m a drop out…

Inspiration porn is a problem. We are treated as objects. Like we’re just here to stroke your good feelings. It doesn’t matter that it’s day to day life for us – walking to the library to pay a fine (I really have no excuse for my library fines considering the library is literally a block away, but you know, so high functioning) is inspirational. Brushing my teeth? Wow, you’re so inspirational, Nora!

People (general) treat us like objects. The things they do? Oh, they’re just day in and day out. But because I’m autistic, because I’m physically disabled, it takes a whole new spin.

I have been told, to my face, that the point of being disabled is to inspire others.

That I shouldn’t complain about my disabilities, because others have it worse.

That I should be grateful I just have pain, and not tumors.

This is ableism and this is inspiration porn.

The single biggest problem with inspiration porn though? So often, the voices of the ACTUALLY DISABLED PERSON are left out. They are silenced. We hear about how much they inspired others. About all the good things someone else did for them.

BOY TAKES AUTISTIC SISTER TO PROM!

GIRL WITH DOWN’S SYNDROME SHOOTS WINNING BASKET!

PHYSICALLY DISABLED TEEN RUNS MARATHON!

AUTISTIC WOMEN DECORATES CAKE!

It goes on. And on. And on. But.

We hear the voices of their friends. Their parents. Their doctors. The people who did the “good thing” for them out of “pity”.

And our voices are left silent. If we protest, we’re told to “shut the fuck up”, because we should be living to inspire.

Look, I happen to personally think I’m a pretty badass person. I’m sarcastic, cynical, snarky, but also a loyal Hufflepuff badger. I’m stubborn as hell and don’t you dare tell me I cannot do the thing, or I will do the thing simply to prove you wrong. Even if I wind up hurting myself in the process, I will do the goddamn thing because it has been hammered into me to not let me disabilities hold me back. Even when it is not feasible for me to do the thing. It’s dangerous, but I do it because it’s what’s expected of me. And that’s fucked up.

But I’ve been taught from a young age that it’s my job to be an inspiration. That if I choose to do things, I can. And that the only disability in life is a bad attitude.

Let me break it down to you.

I can smile all I want at the stack of dirty dishes, but it won’t change the fact the hot water will cause me to pass out, the soap will cause my hands to break out, my hands won’t be strong enough to hold the dishes and I will drop them. I can kick your ass at Super Smash Brothers, and I can play Super Mario RPG: Legend of the Seven Stars with my eyes closed, but dishes? Nope.

 

Frankly, expecting disabled people like me to be happy-go-lucky all the time is pretty messed up. We don’t expect able bodied people to be happy all the time. While I am a pretty bubbly, happy go lucky person often, I also have a wicked bad attitude. And you know what? That’s okay. Stop objectifying me and expecting me to be happy all the time despite my disabilities. My disabilities fucking suck. It sucks living in pain 24/7. It sucks having CVS and throwing up constantly. It sucks having POTS and suddenly being a Nora-puddle on the kitchen floor.

What are you the most upset about?

Are you upset that I called it porn or are you upset that I’m being objectified? Perhaps if my word choice is what is upsetting you the most, you’ve got something to learn.

0

Dissecting Your Ableism

“But you’re so smart, Nora!”

“I know you can do it!”

“You are so capable.”

“Just believe in yourself!”

“You can, you can!”

“I believe in you, why don’t you believe in yourself?”

In middle school and high school, I was your stereotypical smart kid. I took an entire extra semester for fun (which I eventually had to take a health withdrawal and drop down to two classes taken from home, but that’s beside the point). I took world history for fun. I got excellent grades, scholarships, and took honors classes. My test scores didn’t reflect this because due to the combo of being autistic, ADHD, dysgraphic, and dyscalculic. Tests are my enemy. I am incapable of testing well.

But despite having straight A’s my freshman year of high school, here I am at age 28. No job. No college degree. No exercise. I spend my days needing help getting my basic needs met  – laundry, dishes, med set up, food cooking, cleaning, etc. I’m barely capable of getting out of bed most days. And I have heard every one of those phrases at the beginning of the post. Let’s break them down, shall we?

  “But you’re so smart, Nora!”

Okay, stop right there. First of all, how are we measuring “smart”? My IQ is actually on the low end due to the aforementioned piss-poor test taking skills. Am I smart because I have really good reading comprehension? Because when I am stressed out in school, I either fully throw myself into my work or slack off? What does being “smart” in school have to DO with my day to day life? Woo hoo, I knew how to get good grades in middle and secondary school. Go team Nora, have a shiny gold star. But that doesn’t mean I know how to get a job, how to hold down a job, how to get through college, and how to function in the world. And that is SUCH a belittling phrase. What if I wasn’t smart? What if I struggled in school and flunked out? What would that mean? Why are you measuring my worth by how I did in school over a decade ago? It’s kind of a shitty thing to do.

“I know you can do it!”

Oh. So you’ve climbed into my brain? You’ve seen my extensive medical chart? Stop right there, you’re being ableist. You have NO FUCKING WAY of knowing how or what I can do. You aren’t being empowering, you aren’t being encouraging. You’re being an ableist asshole. I cannot do many ADLs (activities of daily living). I rely on others to get by. Just because you THINK I should be able to do something myself (cook food, do dishes, etc) doesn’t mean I can. Want to know what happens when I do my own damn dishes? My hands break out. If I wear gloves, my hand still break out. I drop and break dishes. I burn myself with the hot water. I pass out from the heat of the water. My hands cramp from hyperextending or I sublax my fingers. Or I get distracted and wander away. I am not lazy because I do not do my dishes. I cannot do my dishes. By saying “I know you can do it!” you are saying my struggles are not legitimate. And who are you to judge what is or isn’t a struggle for me?

“You are so capable.”

Why yes, yes I am. I’m capable of setting fires and melting blenders. Of falling asleep with the candle burner on. Of burning toast. Of turning my tuna casserole into a lethal weapon. Of passing out in the shower. Of face planting! I am capable, thank you! I’m capable of hiding in my room for days. Of burrowing under my blanket fort. I’m capable of scripting entire movies (Labyrinth and The Lion King, I’m looking at you), while forgetting to eat dinner. I’m capable of memorizing entire episodes of The Muppet Show or Fullmetal Alchemist, while not being able to remember what day my doctor’s appointments are scheduled. I’m able to remember my friend’s schedules perfectly, all the while struggling to remember to take care of myself. So yes, I am capable. I’m also capable of calling you an ableist butthead for assuming just because I can play video games, I am capable of cooking food or doing my dishes. I mean, what? Cognitively and physically, they aren’t remotely the same.

“Just believe in yourself!”

Oh. So I’m just a small town girl, living in a lonely world? Oh. Wait. That’s not what you meant, is it? I can believe that I am 5’7 and it’ll happen, but quite frankly it won’t. I can believe that one day my body will produce the correct amount of immunoglobin so I’m  not constantly sick, but it won’t happen. So I can’t just believe I can get a job, do the dishes, cook my own food. My skills are shove food in microwave, push buttons, shove food in face. No amount of believing will change that. No amount of believing will allow me to pass math without extensive help and quite frankly, a miracle. No amount of believing will permit me to hold down a job because of all the time I would need off, the days I couldn’t make it in, all the appointments, etc.

“You can, you can!”

So, is there something you’re not physically able to do? Maybe you cannot, for the life of you, open a jar. Maybe you can’t drive a car. Maybe you can’t reach the top shelf or the top of the fridge. But because you’re able bodied, that’s okay, you don’t have to set your mind to it. You find someone to help you, right? So why, may I ask, am I expected to do things that are PHYSICALLY IMPOSSIBLE? HOW is just setting my mind to it going to make a difference? Newsflash: It isn’t. Everyone has things they can or cannot do. I can’t set my mind to being able to cook safely by myself on the stove. I can’t set my mind to being able to do the dishes. It is, literally, impossible for me.

“I believe in you, why don’t you believe in yourself?” 

Well, okay, I do believe in myself. I believe that despite being disabled, I can still make a difference somehow. I believe that being autistic isn’t something that needs to be cured or changed. I believe that I can be an activist and an advocate, all while sitting in my living room under a very fluffy cat. I believe that the bridges I burn will light the way, and I believe that I shouldn’t be quiet, but I should instead raise hell. I believe that I am funny, affectionate, and loyal. Just because I don’t believe what you believe, doesn’t mean jack shit. So leave your ableism at my door before entering my apartment. Don’t tell me you believe I can do something because you don’t want to do it for me or think I can yourself. Believe all you want, but don’t force your beliefs on me.

 

We need to stop saying ableist phrases like this. We need to, instead of forcing people to do things that are difficult or painful, support them. I can’t open a jar or cook on the stove, but I can make you laugh. I can be a loyal friend and if you activate Nora!Rage or Loyal!Nora mode, watch out, world. Stop telling me what I can or cannot do and instead, support me as I am.

 

In case you can’t tell, this is inspired about a very certain situation regarding PCAs and home health workers. Since this is a public blog post, I am leaving it vague on purpose. 

0

To my older self

Dear Annora,

You are ninety years old. Ninety! Right now, you are sitting in a doctor’s office waiting for your lost iPhone to be returned to you. iPhones. Funny, huh? Remember those? Remember how you were attached to it? Remember how lost you felt without it? Seventy-two years ago feels so long ago, and yet so near. You remember the sights and smells from the doctor’s office and the taste of your cherry coke. You remember everything but you can’t remember to tie your shoes. Look down. They’re either tied or slip ons, aren’t they? Sure are. Just like now.

When you were twenty-eight, things were so different. Doctors mocked you. Doctors laughed at you. Nurses tried to kill you. People told you were were faking your illnesses. How does it feel to still have them at ninety? I know you’re alive. You’re alive and kicking ass. How many people have you crutch whacked by now, anyway? How many cats have you had? How many friends have you lost?

Annora, you never outgrow your video game addiction. Have you caught all the Pokemon yet? That’s a pretty admiral life goal, you know. Do you still watch all the Marvel movies? Are you still best friends with Anna? Do you still miss Beth with all your being? How many more friends have you lost? How many anime cons have you been to? How many times has someone told you you’re too old for Sesame Street and Blues Clues and how many death glares have you given?

Oh, sweet Nora. You are still chronically ill. It’s something you will never outgrow. The person you are at 28 is fighting for the person you’ll be at ninety. She is fighting for your rights. She is being the voice for the voiceless. Even though she’s scared shitless, she’s launching herself more and more into being an activist and an advocate. She’s so fucking shy and timid right now, but she isn’t shutting up. You’re ninety now, you likely aren’t being quiet either. People aren’t listening to you in the past because you’re only twenty eight, you’re small for your age, and you’re disabled. But you’re fighting and giving them hell. As Chris Crutcher once told you, you’re kicking the hell out of everything that kicks the hell out of you.

You’ve been published. Your memoir is a New York Times Best Seller (okay, I’m kidding. I’ve not even gotten the first page written at age 28 but dammit it will be published by the time I/we are 30. And people read it. They laughed, they cried, they rejoiced with you.

Nora, your life as an advocate has cost you friends. But you’ve also gained them. You’ve gained the most incredible friends you can imagine.. You’re appalled now that people once thought autism was a character flaw, something to be cured. Things are different now (well, not all things: you still crack “that’s what she said” jokes, much to “kids these days” horror).

But, my precious Nora, you love the life you lived. And the life you are living. You aren’t dead yet.

You’re getting better.

0

What I Wish Someone Had Told Me

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

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

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

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

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

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

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

I wish I had known how depressing it was.

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

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

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

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

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

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

I wish someone had told me all these things…

But you know what else?

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

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

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

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

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

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

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

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

 

 

Alone we are rare.
Together we are strong.