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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.

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Spoonie Terms 101

Becoming  a member of a spoonie, or chronic illness community , can be overwhelming with all the jargon and lingo. So I’ve created a document to help you navigate your way through it. There are helpful links, etc. This was originally written for the Spoonies Without Judgment  Facebook group, and feel free to join if you’re looking for a place to call home. I help admin there and we don’t bite. Well, not too hard. Hee.

Terms:

Ableism: Stella Young said it best in her TedTalk. Basically, if it’s not something you would say to someone who is currently able bodied, don’t say it to someone with a disability. This blog post of mine sums up the problems with ableism and why it’s currently a problem. Not to toot my own horn, but I think it’s pretty stinking good!

Ablesplain: I’m just going to pull out a quote from this link because it says it far better than I could:

“In a nutshell, ‘splainin’ is an “explanation” which is put forward in the most patronizing way possible. The ‘splainer feels passionately that ou opinion and beliefs outweigh actual lived experience and wishes to inform everyone of this fact. ‘splainers are unfortunately especially common in safe spaces in which the voices of people living in marginalized bodies are centered, because such spaces are threatening to people who find our voices contrary to their worldviews.

‘splainers feel the need to put their oar in on conversations where they may not specifically be welcome or even wanted, often with an air of entitlement. They approach the conversation from the position that people must be ignorant if they think/experience differently than the ‘splainer does, and that a few rounds in comments will sort them out and bring them over to the side of right. One of the many reasons that this can be harmful is that often people are just starting to come to the place where they feel comfortable asserting their lived experience, because they’ve been taken in by arguments like those presented by the ‘splainer for their whole lives, and seeing those arguments again can set off a spiral of self doubt, confusion, and self loathing.”

Aspie/Autie: Slang for an autistic person. Some people like these terms, some people don’t. Choose to use them if you want, choose not to use them if you want.

Brain fog: “Brain fog”, also know as “fibro fog”, “pain fog” or “med fog” is the feeling when pain or meds make it hard to think. It kind of feels like you’re swimming through pea soup or mashed potatoes. You forget things easy, mix up terms, say the wrong thing, etc.

Bump: Boosting a post up if it has no replies or not a definitive answer. This helps it to come back up.

CW/TW: Content warning or trigger warning. A trigger warning is something that could case acute distress such as types of abuse. A content warning is something that may trigger a phobia and is considered more of a “heads up” than an actual trigger.

Crip: Slang from cripple. Many have decided to reclaim it as their own word and to use it for themselves. The choice is yours to use it or not. Do not use it as an insult – such as “you’re such a crip!” in a cruel way. However, it is often used in a tongue-in-cheek way such as “crip perks”, etc.

Flare: A flare is an acute acting up of your chronic illness. So, if you see someone saying “I am having a fibro flare” today, it means their fibro is currently acting up.

Gimp: See “crip”. Just another word for the same thing.

Image description: An image description is telling someone what’s going on in the picture. This is used for low vision/blind people, screen readers, low bandwidth, etc. If you aren’t sure how to write one, read this. It’s also perfectly okay to ask for help!

Muggle: Muggle is just a term we use for non-spoonies. It’s usually used in a tongue-in-cheek way or in jest.

muggle sick: “normal people sick”. So, if you have a cold, you’re “muggle sick”.

Signal boost: A signal boost is posting something in a group or on your timeline that needs attention. For example, a couple years ago there was a recall of epi-pens (something used for people who have severe allergies). People would post them with the words “signal boost”, meaning it’s important and something should read and share, even if it doesn’t affect them directly. This is mostly done for allergy warnings, med or food recalls, or things that could threaten a life.

Spoon debt: Reaching into your spare “spoons”, or energy, to do something but it means you won’t have said energy or spoons tomorrow. It can be near impossible to catch back up.

Spoonie: Taken from the spoon theory A spoonie is merely someone who suffers from chronic illness.
Painsomina: Pain + insomnia. AKA a living hell. You can’t sleep because of pain, even though you’re SO freaking tired.

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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.

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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.

 

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From fear to hope

Something that is a regular part of my life, and has been for all twenty-eight plus years of it, is being in and out of doctor’s offices. Everything is intertwined and, as my primary care doctor put it, “Well, your body doesn’t always read the textbook.”  Which, you know, while it’s a difficult pill to swallow at least I’m unique, right?

But what I find most terrifying out of all my medical issues isn’t what I have. While a lot of them suck horrifically – NF1, fibromyalgia, and over a dozen more – what I hate even more is the disorders that we don’t know why I have. We don’t know why I randomly can’t eat for a week, and every attempt ends in me puking. We don’t know why while I’m in these flares I can barely leave my bed and I’m not even strong enough to play video games. We don’t know why despite throwing every nausea medication in the book at it, it’s still not enough.

Because, you see, I would rather have something scary that I know what it is, then something mild and easily that I don’t know. The unknown is one of the scariest parts of being medically fragile. Knowing, at least, would give me a definitive answer.

For now, I live every day in fear. For now, I live in fear that my stomach will stage a mutiny again and I’ll be back into the vicious cycle of the stomach issues from hell. For now, I live in terror that the GI will brush me off again. I worry and worry and worry that every test will turn up normal and we’re back to square one.

But this doesn’t mean I’ve given up hope. I know there’s a diagnosis out there for me. I know there’s an answer to why I’m like this. And even though right now it feels like there’s no hope whatsoever, I know there’s still a flicker of hope out there. I know that one day, my fears will melt into hope again and I will have the answers I need for my medical crap.

 

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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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To the child asking me about my disability

Hello there, little one.

You are young and you are still learning about the world. There’s so many questions you have. It’s a big, scary world out there and each day, you find out more and more about it. And that’s okay – I’m older than you and I’m still learning more about this world by the day. But that’s okay. Part of life is learning and growing and while you’re young, it’s the best time to do it! There’s never a bad time to learn.

Image: I am standing in front of the “malls balls” in Adelaide, South Australia. I am wearing a grey hat, a purple jacket, a purple T-shirt, and jeans. I am using my yellow forearm crutches.

You see, my disabilities are visible. There’s no hiding them. Some days I walk with crutches. Other days I use a walker. Rarely, I use a wheelchair. When I don’t use these, my gait is off kilter and looks funny.

You haven’t been exposed to a lot of people with disabilities. And it’s okay. Because guess what? I love all the same things that anyone else does. I love Pokemon and Doctor Who and coffee and pizza. I love jokes and I love hanging out with my friends.

Please don’t be afraid to ask me questions. Please don’t be afraid of me. I want to help you understand. I want to help you learn to navigate the world. I want you to approach me.

It’s okay if you don’t understand. It’s okay if you’re nervous. It’s okay if you’re scared. But I am learning more about the world by the day, just like you are.

Please ask me questions. Please learn more about my disabilities. Please learn how you can be an advocate for people life me. After all, it’s going to take someone like you to change the world.

 

 

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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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Just because I’m disabled

One of my pet peeves is when people tell me they could never do what I do. That they could never juggle all these appointments, juggle all these meds, juggle all these health problems. I absolutely hate it when people tell me that they could never be that strong. When they tell me I’m SO strong, SO brave, SO courageous for merely living the hand live dealt me.

Image is of me nearly a year ago, wearing sunglasses and in a hospital gown.

Image is of me nearly a year ago, wearing sunglasses and in a hospital gown.

What no one tells you is that when being strong is your only option, when the so-called bravery is the only way to live your live, it’s not all it’s cracked up to be because to be honest? There are days I cannot do it either.

The truth is I’m merely living my life to the best of my ability. The truth is that sometimes I have a bad attitude and that is okay. The truth is sometimes I am not brave. Sometimes I am not strong. Sometimes I break down. And the fact of the matter is, there’s nothing wrong with that. It’s unhealthy to be strong and brave all the time.

Why am I considered your inspiration just for doing what is literally my only option? Seriously, most days I sit on my ass playing video games. And I have a lot of supports. It’s not like I do it all on my own anymore, though it seems like I have to far more often than I should.

Being brave and strong isn’t what I do. What I do is live my life. Just like anyone else. Just like everyone. Just because I’m disabled doesn’t mean that I live my life any differently than you do and am worthy of such words. Because really, when living this way is your only option, you just DO.

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Medical Nightmare

So, this current update is coming to you live from Fairview Ridges hospital! Yay! I will spare you a picture – I promise I look super sexy and dazzling but y’all really don’t want to see it. I’ve been live-updating on Facebook as well as posting in groups, chats, but I thought I’d post a central update that has everything together.

I went to my primary doctor yesterday. My appointment that I thought was scheduled for yesterday at 120 was actually… September 4th at 140. I nearly cried, but they managed to get me into a walk in with a different doctor. And back earlier than the “over one hour” window I’ve been quoted. I guess I looked awful. Which the nurse informed me when she saw me. Awesome. And I’d lost ten pounds. Even more awesome. And I was running a fever! With all that stuff, I was shuffled to the ER.

CT scans. Blood tests. IVs. Oh my! HELLA low blood sugar – 53. Right now as I type this, it’s up to 70 so while not ideal, it could be worse. Low magnesium. Liver out of whack.  No throwing up since I’ve been here, but also no eating. We’re going to try some Jell-O soon.

There’s a slim chance I’ll be sprung free tonight, but we’re looking more likely at tomorrow. And amusingly, that appointment two weeks from now is now my hospital follow-up. Because I don’t want to see random doctor – I wanna see MY DOCTOR DANGIT.