And in my hour of darkness, she is standing right in front of me. 

I miss you, Beth. 

It isn’t fair. It isn’t fair that it’s your birthday and you’re not here. It’s not fair that I’m sitting in the hospital waiting for my ride home and you aren’t here to distract me. 

Nothing prepared me for losing you. Nothing prepared me for the heart drop feeling when I was told. There really are no words for that moment that changed my world forever. 

I’m changing, Beth. I’m growing. I’m writing a memoir. I’m starting to get published. I’m finding answers to my fragile health. 

I want to share with you who I am becoming. I wish that I could have you call me a dork or a dweeb again. To tell me things are going to be okay. 

But the person who told me things would be okay is why I am not okay. I am not okay. I am broken. I am sad. I am lonely. 

And I’m completely lost without you. 

And when the broken hearted people, living in the world agree. There will be an answer, let it be. For though they may be parted there is still a chance that they will see. There will be answer, let it be. Let it be, let it be, let it be, yeah let it be, there will be an answer let it be. Let it be, let it be, let it be, yeah, let it be, whisper words of wisdom let it be.  And when the night is cloudy there is still a light that shines on me, shine until tomorrow, let it be. 
I’m trying, Beth. I’m trying to let it be. I’m trying to stay hopeful and rise out of my hour of darkness. My health is failing. My depression is worsening. I’m spinning wildly out of control.  

I just need you to tell me to let it be. 

Love, Nora. 

PS: the ER sucks, I have a headache, and please tell me freaking ride to get their ass here. Kthanxbai love you. 

Why I’m An Activist

Sleep evades me. I’m tired. I’m cold. I’m hungry. I’m weak. I’m feeble. I’m so very wary. I’m sick. I’m currently flopped on the floor, curled up with my security monkey, Zeke, and one of my fuzzy blankets. The only sounds are the gentle wind blowing outside as we gear up for a winter storm and my cat munching her foot. The third sound is the rhythmic tap of my fingers dancing across the keyboard. Tap. Dance. Leap. It’s become old hat at this point: it’s 5:40 am and I’m wide awake, yet completely exhausted.

“You’re wearing yourself out.”
“You’re exhausted.”
“You’re sick.”
“Why are you still doing this?”
“Why won’t you give up?”
“Why do you care so much?”

Questions people ask. Questions people don’t ask, but I can see it on their faces. In their eyes. I can hear their concern laced through their words. Why are you an activist when your own health is so fragile? How can you call yourself an activist when you don’t make phone calls, you don’t go to the places, and you don’t do the things? You’re lazy. You’re not enough. You’re just a slacker – you aren’t making real change.

I don’t believe any of that. I don’t think any of that is true.

Nights like this are why I’m an activist. As I lay on my floor, shivering yet burning up. Unable to move without intense pain, yet unable to sit still. As Compazine and Zanaflex runs through my veins. As I’m alone and in need of medical help…that doesn’t exist. For if I go to the ER, I will be treated like I am a drug addict. An attention seeker. That it’s all in my head. And nothing productive will happen.

But I am one of the lucky ones. I have a diagnosis. I have a laundry list of them. Some people don’t. And that’s why I’m an activist. That’s why I write. So people can think “Hey, me too!” and know they aren’t alone. So people can think “hey, there’s a name for the thing!” and roll along with it. I’m not an activist because I want to be – I’m an activist because I have to be.

I’m an activist because there are still nights when I’m on the floor, unable to get relief from my pain. I’m an activist because I’m autistic and people feel the need to take away my rights. I’m an activist because people think I’m helpless just by looking at my list of disorders and not getting to know the person I am – kind, compassionate, loyal, cynical, sarcastic, and more all rolled up into one feisty person. I’m an activist because it quite literally is my only option – for when I am silent that’s when they are winning. When I speak, that’s when I have power.

Image description: The background has the picture of three feet: one adult foot, one child foot, one adult foot. They are both standing in two states at the same time. Text reads: "I'm an activist because it quite literally is my only option - for when I am silent they are winning. When I speak, I have power."

Image description: The background has the picture of three feet: one adult foot, one child foot, one adult foot. They are both standing in two states at the same time. Text reads: “I’m an activist because it quite literally is my only option – for when I am silent they are winning. When I speak, I have power.”

I’m an activist despite my disabilities. I have a voice even when I’m silent.  Even though I’m straddling two worlds – physical and online – I’m an activist. Even though my activist life is solely online due to my phone phobia, social and sensory problems, and physical health – I am am activist. Even though it’s limited to flash blogs, tweets, blogs, submitting my work online, and Facebook – I am an activist.

I am an activist because I work for change. Perhaps it’s merely opening a new perspective. Perhaps it is me helping someone put into words something they never could before. Perhaps it is helping someone realize the way they are acting is dangerous and ableist. Perhaps it is nothing – but I have made peace with that.

Being an activist doesn’t mean you do all the things. It means you strive for the changes. It means you do everything in your power. We all cannot do everything, we all cannot be everywhere.

But we all have the power to do everything within our own abilities, and that is what I am doing.

A new label

I have a new label.

It isn’t a pretty one. In fact, it changes nothing. But at the same time, it changes everything. My treatment doesn’t change. But I have a name for it.

I know why I’m sick all the time.

There is still no treatment.

There is still no cure.

But goddamn it, I have a name for it.

I have cyclic vomiting syndrome. 

Nothing changes.

I still get sick a lot.

I still wind up in the ER for dehydration.

But it has a name.

It has a name. I am no longer faking, I am no longer just pretending to be sick. I am sick. It has a name. And there’s a reason.

And right now, that’s what matters.

In which I like my labels

I like my labels. “But labels are for soup cans, Nora.” “Labels aren’t for people.” “Use person first language!” “You’re not autistic. You’re a person with autism. You’re a person first!” So many times people try to take away the labels from me that I crave – the labels I’ve worked so hard to carve out for myself and accept as a part of the Nora-ness that I am.

I have food allergies. There are many foods that are not safe for me. I rely on labels to tell me what is safe and what isn’t. Sometimes the labels lie, but most of the time they are a huge help for me. I feel like it’s a similar concept in my day to day life – my labels help me know who is safe and what groups are safe for me.

Labels help me know that I am not alone and that I am not broken. Before I came out as asexual and aromantic, I felt broken. I tried to make myself act in a way that wasn’t me and didn’t make me happy, in a desperate attempt to fit the cookie-cutter molds of the world. It helped me find other people like me and have a word to put on the feeling I could never quite put my finger on.

Labels help me know what people are like me. When I connect with fellow autistics, for example, I know that I won’t have to explain some of my quirks. I can use jargon that they understand or use themselves. Or explain it in a way that makes sense to them, whereas explaining them to an allistic (or a person without autism), it wouldn’t quite click on the same way.

In the same way, labels help me know what places are not safe for me. If you’re labeled with puzzle pieces, I am on my guard because I assume you support autism speaks. If you use certain slurs, that label shows me that it’s not something I want to be in support of or contact with. My labels not only help me, but they protect me.

Image is of a pale brunette wearing blue glasses. She is wearing a sweatshirt with various Studio Ghibli characters on it. She is disabled, autistic, asexual, and aromantic - and bloody proud of her labels.

Image is of a pale brunette wearing blue glasses. She is wearing a sweatshirt with various Studio Ghibli characters on it. She is disabled, autistic, asexual, and aromantic – and bloody proud of her labels.

By trying to take my labels away from me, you’re diminishing who I am. You still use labels in your day to day life like “doctor”, “teacher”, “blogger”, and “friend”. But when it’s something that the world perceives to be negative or something that doesn’t fit with what they perceive the world to be like, these labels are suddenly bad. These labels are suddenly undesirable. These labels are suddenly not what we want them to be.

It seems to me that the people who are most against labels aren’t the ones who benefit from the labels. They get a sense of self pride and think they’re being ever-so-clever and such a BIG help to us by reminding us that we are more than our labels. That we shouldn’t choose to use labels. That labels are not for people.

But the thing is – they are. As a disabled person, my labels are everything to me. They assure me that I’m not doing anything wrong. They assure me that I am not broken, that I am not flawed. They assure me that there are others like me in this big, beautiful world full of all different types of people and all different types of labels. It allows me to say who I am in less words.

I like my labels. Please don’t take my labels away from me because you don’t like using them for me. Call me autistic. Call me disabled. Call me Annora – because that is who I am. It’s messy. It’s not perfect. But it’s beautiful – just like I am. They all mesh together to create the whole picture of who I am. My labels are me.

The warnings are not there for decoration!

So. You know those warnings on pill bottles? The ones that say things like “swallow whole – do not chew or crush”? The ones that give you instructions on how to take the medication? Well, here’s a novel concept for y’all: they aren’t there for decoration. This is the story about how my home nurse could have fucking killed me all because she didn’t read a label. All because of a choice she made.

I have not gotten along with this nurse for, well, a long time. She had never heard of my particular eating disorder… despite working at one of the best eating disorder clinic in the country, if not world. She kept trying to blame everything on my mental health. She just realized I had had major back surgery a couple weeks prior to when I discovered what was happening. She gave me gross, in depth details about her sinuses and ear infections, complaining to the girl with a weakened immune system that she “didn’t like being sick”. Told me that I HAD (not should, not should look into, not it might be a good idea) to do yoga and mediate. Whatever. Annoying as fuck, but with some things you just gotta put up with it.

I had run out of my 50 mg tablets for the medicine in question, so she took it upon herself to cut them in half. Despite the HUGE warning on the label “swallow whole – do not chew or crush.” Even though most basic rules of medicine is you never cut an XR/ER tablet. This is a HUGE mistake – not a rookie one. Everyone I have talked to knows this is something you don’t do. It can either overdose or underdose a patient. If you suddenly change your dosage of an SNRI, you go through withdrawal. She caused Antidepressant discontinuation syndrome. Which can, in rare cases, be fatal.

She could have killed me. I could not be typing right now. I could be in the hospital. All because she didn’t read a label. The labels aren’t there for decoration. The labels aren’t there just because the pharmacist felt like slapping them on. When people say antidepressant withdrawal is a huge deal? It is a HUGE fucking deal. I plead with you because of this, NEVER split your extended release tablets in half, no matter what. And never EVER stop cold turkey – you get very, very sick very, very, quickly. I nearly went to the ER with my problems because I didn’t know why I was so sick. And now I do. And now I’m pissed.

What now?

First, I would like to some questions. Some that I actually got, some that I know people are wondering.

  1. Why can’t you do your meds yourself?
    1. In my state, I qualify for what is known as a CADI waiver which means I qualify for nursing home level of care.
    2. I am low vision, autistic, and have chronic pain. These things combined make it near impossible for me to manage my meds myself when the number tops one dozen.
  2. How did you not notice?
    1. First, I did suspect something was amiss just a few days prior. I figured I would find out the next time.
    2. I am low vision, as I said. My pills come out in a medicine cup from an automated machine like this and being low vision, I have trouble telling the pills apart.
  3. Why didn’t you confront her when she told you?
    1. I went into shutdown. I was completely overloaded and basically incapable of talking beyond basic “uh huh” and “huh uh”
    2. Even if I hadn’t, I wanted to talk with my case workers and doctors – I wanted any confronting on my end to be done with a paper trail. Although, my state is a single party recording state (meaning only one party has to consent) so I would be able to record any further interactions. I did block her  cell phone number and told my case manager she is never to set foot on premises again.
  4. What happens now?
    1. I don’t know. I am waiting for any legal action until I see my primary doctor next.

Second, I will be getting a new nurse soon. We are completely changing agencies. But… I am scared. I am terrified. Chronically disabled people often don’t trust their providers, with damn good reason. This has shattered my trust even further. We put our lives in the hands of someone else, and we are at their mercy. But if we don’t, then we get sick anyway because we cannot do it ourselves.

There is no fix. There is no way to make it easier. This is what it’s like living when you are chronically ill. You have to trust people who can kill you with one little mistake. And it’s utterly terrifying.

I am not a tragedy or an inspiration

I am not a tragedy. There is nothing tragic about my life. I am disabled. I am autistic. And you know what? It’s all a part of who I am. It isn’t tragic. It isn’t a horrible fate. And no one is my voice. No one but me. Even when I lose my verbal speech. The only time I do not have a voice is when you try to silence it. The only time I am voiceless is when you refuse to listen to my atypical speech.

I am not a tragedy. I don’t suffer from autism. I am not a person with autism. I am an autistic female. Autism runs through my veins. It’s very much a vital part of my personality. It is as crucial to my personality as the fact I’m a sarcastic asshole and my affinity for puns. It’s just not something I can easily change. And to be frank, I wouldn’t change it. Of course there are things I hate about autism. It isn’t all sunshine and rainbows. But at the same time, to love myself and to hate my autism – like so many parents claim about their children – would be to hate the very core of my being.

I am not a tragedy. My disabilities are not tragic. Sometimes they suck – getting sick so easy sucks. Having disabling migraines suck. Being in pain all the time sucks. But you know what? Some very good, very not tragic things have happened as a result. I have an amazing circle of friends who would move hell and high water for me. I have friends who have done little things for me, just to make me smile or to hear my laugh. I’ve made friendships I wouldn’t have had. Is the fact I’m a college drop out tragic? Absolutely not. I am simply making the best of my situation. There is nothing tragic about it. The only tragedy is people who try to silence me, because they think I should be a good little crip.

I am also not your inspiration. I do not exist to inspire. I do not exist to teach you. I do not exist to make your life better. There’s nothing inspiring about me doing my famous hobble-hop on days when I don’t want to use my crutches or walker. There’s nothing special about me being able to balance crutches and a cup of steaming hot coffee (well, okay, it is kind of impressive I don’t spill it down my shirt, but that’s because I’m an absolute klutz not because I’m a crip).

I am not your inspiration. I am not inspiring because I simply go about my daily life. To call me, to call your child, to call your sibling an inspiration just because we’re disabled and for going around our days is ableism, and turning us into inspiration porn. Don’t do the thing. Don’t demean us. Don’t objectify us. Don’t tell us that we exist to inspire, that we exist to teach. We don’t. We exist to life our lives.

I am not your inspiration. I am just like you in many ways. I love Firefly and Doctor Who, the Avengers and Pirates of the Caribbean. I’m snarky, sarcastic, cynical, bubbly, and happy go lucky. I am a mix of Luna Lovegood from Harry Potter, Kayle from Firefly, River Tam from Firefly, and Silica from Sword Art Online. I just have disabilities.

Do not turn me into a tragedy.
Do not turn me into an inspiration.
For I am none of those.

I’m simply Nora.

Allodynia Sucks

I have AllodyniaIt sucks. And by sucks, I mean it really and truly, totally, 100% sucks. You know the feeling when you have a still healing sunburn? You know that feeling when the slightest touch makes you recoil in pain? Yah, that. You know the relief you get once the burn has faded? Yeah, I don’t get that.

I haven’t had it my whole life though I’ve always been hypersensitive to touch. I’ve never liked being touched, never liked hugs. As long as everyone touches my clothing and not my skin, it’s fine. But living with it day in and day out is exhausting.

Some people only experience it when they have a migraine. Others, like me, have it 24/7. It restricts my clothing choices – some of them are literally painful to wear if they aren’t made of the right fabric. It means I have to use a blanket year round to sleep under – I absolutely require the soft touch against my skin because the feel of the room air on my skin is painful.

Just imagine.

Imagine enjoying the feeling of a breeze, but at the same time it’s painful because ANY type of touch hurts.
Imagine craving physical touch and affection, but not being able to enjoy it, because it hurts. Imagine not being able to enjoy cuddles… because they hurt.

The worst part is for me, there is no treatment. Sure, they can take the edge off.

But I’m still going to live in pain.

Simply by being touched.

So you have an autistic child

So your child was recently diagnosed as autistic. Before you read my opinion and advice, I highly suggest reading this post by Jess Wilson of Diary of a Mom and K’s beautiful Try On My Shoes post.

I understand you may be scared. That you may wonder what the future of your child holds. And that’s okay. All parents are – regardless of what kind of diagnosis your child has. It’s all normal and it’s all a matter of perspective. It’s all a matter of accepting your child and loving your child as they are. This is why I came up with this list of 4 Tips for the Parent of an Autistic Child.

 

1. No verbal speech does not mean they have no voice

Please, I plead with you, never say you are your child’s only voice. That they do not have a voice. Your child has a voice and it rings loud and clear. It’s in their eyes. Their smile. Their body language. In the way they sway to the music or the way they play with their toys. Take the time to listen. Take the time to learn how your child is communicating with you. They are giving you a precious gift – their love, their trust, their voice. Even if it’s not traditional… listen.

2. If you wouldn’t do it to a neurotypical child, don’t do it to them.

So many autism mom bloggers post intimate details of their child’s life. Details no one needs to know and would certainly never be published about a NT child. They are violating their child’s trust and privacy. Just because they will never be able to read it doesn’t mean they wouldn’t want it out there. Just  because they don’t understand or even have a clue doesn’t mean it should be posted. Now, I understand that parents want their voices heard. But ask yourself two questions: First, if I were my child and this were about me, would I want this posted? Second, who is this post for? Is it to get attention for myself? Is it  to get help and advice for my child? Is it so people thank ME for being open about my child? Or is it to share part of my child’s story and their beauty? After you answer these questions, then use that to frame your blog post.

3. Respect the stim

Ah, stimming. Stimming is one of those BIG THINGS about autistic children, and adults too! People hate it. Stimming is critical for us – it grounds us. It keeps us calm. It gives us enjoyment. Everyone stims for different reasons. Things like “quiet hands” don’t do a whole lot of good. Encourage the stim. It keeps us calm in a wild, scary world. It is one thing that is constant. I am not hurting you by playing with my zipper bracelet. Nothing wrong with fiddling with a stuffed animal. Love us. Accept us. And allow us to stim.

4. Don’t use their disabilities or quirks for a cheap laugh

So many times, I’ve seen sensory issues or taste/texture aversions used for a laugh. It isn’t funny if all your child wants to eat is one food. If your child requires certain textures of clothes. They aren’t doing it to be difficult. They aren’t trying to make your life harder. It’s just a part of who they are. It is mean to make fun of something that cannot be controlled. If your child is happy eating oatmeal for every meal, then your child is happy eating oatmeal for every meal. No need to turn it into a martyr-fest and no need to ridicule them for it.

——-

So maybe your child was newly diagnosed. Maybe you’ve known for awhile. But now you know how to teach your child with respect.

SMILE

Something I have been told my entire life is “the only disability in life is a bad attitude”. Not in those exact words, though. “Smile! Your face will break!” “You’ve got to keep smiling.” “Keep your chin up!” “Don’t let it get you down!” “It’s just a bump in the road.” “It’s not that big a deal.” “Other people are more disabled than you.”  “She would want you to smile.” “She wouldn’t want you to be sad.”

You know what? Sometimes attitude doesn’t do a thing. I can have the best goddamn attitude I want, but Beth isn’t coming back from the dead. I dearly loved Beth and Beth dearly loved me. I am grieving. To tell someone who is grieving how they should feel, and even further – to use their departed loved one as a tool how to feel, is unintentionally cruel. We know they would want to see us happy. We know they loved us. We know all that. But knowing doesn’t take away the hurt.

Contrary to popular belief, I’m actually a happy-go-lucky, bubbly person despite being shy, autistic, struggling with anxiety, and having depression. I crack jokes at the worst times and I’m the person you will find cracking up for no reason at a funeral. I laugh to cope – I laugh instead of cry which has created some really awkward moments in my life. But I’m also cynical, sarcastic, and scared. But when you tell me my disability is my attitude, you’re implying that my attitude is the problem when you know nothing of my attitude.

You see, when you say “the only disability is a bad attitude”, you are essentially saying if I tried hard enough, I wouldn’t be disabled. That’s not true. I can try as hard as I want, but I will still have metal in my back. I can try as hard as I want and be as perky as ever, but it doesn’t change the fact my immune system is at war. I can happily bonk you on the head when I have a deliberating migraine, if you insist I keep up a good attitude though… but I don’t quite think that’s what you’re going for.

Shocking, each one of us disabled people has our own personality. I know, novel concept eh? But we’re all unique. We all use our attitudes in different ways. And if someone choose to be bitter toward having a disability – that’s okay. If someone chooses to be angry, that’s okay. It doesn’t make them better or worse than anyone else with a disability. It doesn’t mean they’re a “bad crip” or anything.

It seems that just because we have disabilities, we’re expected to be perky and happy for YOUR benefit. Because YOU don’t want to see us suffer. Because our loved ones who have gone before us wouldn’t want to see us suffer. You know what? Life fucking sucks at times. Life fucking isn’t fair. People die too young, people get illnesses ‘too young’, people are born with disability. Life happens.

I will choose to live with my disability with the attitude I see fit. Today, I may be advocate Nora. Tomorrow, I may be educating Nora. Next week, I may be bitter and cynical Nora and in a month, I may be bubbly and cheerful Nora. Just like an able-bodied person, I have feelings and emotions too. Just because parents of disabled children seem to think we should be happy and their children should be joyful, doesn’t mean we have.

Disability isn’t merely overcoming what our disability throws at us.

 

Demeaning Disability

I have grown up disabled. I have no idea what it’s like to be able-bodied, although my health has certainly been up and down and I’ve had periods of being more able bodied that other periods. But I’ve grown up disabled – always sick, always weak, always in and out of doctor’s appointments. It’s a part of my life I’ve just had to accept and roll with. Sometimes literally. One of the attitudes I’ve gotten, in both real life and my internet life, is that “disability is a challenge to overcome.” If only people knew that this demeans the impact disabilities have on my life.

 

Image description: white and light green text over a rainbow heart. The words state "Simply stating disability is a challenge to overcome demeans the impact disabilities have on our lives."

Image description: white and light green text over a rainbow heart. The words state “Simply stating disability is a challenge to overcome demeans the impact disabilities have on our lives.”

You see, this really belittles how difficult it is to have disabilities. While I straddle the line of visible and invisible and feel like I’m trapped in two worlds, I’ve seen the ableism that exists on both sides of the coin.I’ve seen what it’s like to be believed because it’s visible, and doubted because it’s not.

My low vision? More than just a challenge to overcome. I can’t see well. My vision sucks. I need help going places because I’m liable to run into things. I can’t read bus routes anymore. My print is all enlarged. This is not just a challenge.

My anxiety? SO much more than a challenge.  You can’t see it. You may think that I just need to suck it up and go to the dentist or get over my social fears. But I can’t. It’s not just a challenge. It’s a matter of learning to live with it, learning to cope, and learning to work around it and with it.

I cannot overcome it. It’s not just a challenge. It’s me at my core. It’s who I am. I can choose to embrace it and make the best of what I have – sometimes overcoming, sometimes not. Both options are okay and fully acceptable. Both options have value and merely. But do not demean me and tell me my disabilities are simply a challenge to overcome. Because they are so much more than that.