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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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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.

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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.

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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 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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I still can’t believe you’re gone

I carry the things that remind me of you
In loving memory of
The one that was so true
You were as kind as you could be
And even though you’re gone
You still mean the world to me
In Loving Memory – Alter Bridge

Dear Beth,

It’s been four months. Four long, lonely months. And not a day goes by that I don’t miss you. Not a day goes by that I don’t miss you. Nothing happens in my life that I don’t want to tell you about.  There is so much in my life I need to update you on. There are so many things I want your advice on. There are so many funny things I want to share with you. But I can’t. There’s no way to. It’s not happening.

I wish I could tell you how scared I am with my health. That I’m losing weight again. That I’m running fevers. That we don’t know what I can and cannot eat again. I wish I could tell you that once again, I’m covered with random bruises and mystery rashes no one can explain. I wish that I could ask your advice. I wish that I could whine to you with all the IV pokes and blood draws I’ve had yesterday – I know we would have had something witty to say about the last ER trip that took four gosh darn pokes. I wish i could tell you about the good doctors, the bad ones, the nurses who made may stay worth it.

I wish I could tell you how we’re finally getting my home health care slowly lined up. I wish I could tell you how I’m doing something for Halloween for basically the first time. I wish I could tell you the funny things my doctors say, the off the wall things they say. But I can’t. And I never can again.

I wish I could tell you how much fun I’m having in my new video games. I wish I could share all the pumpkin spice related goodies with you – you would be SO HAPPY at all the pumpkin spice stuff this fall. It’s everywhere. But you’re not. You’re not here. You’re not anywhere.

I’m lost without you. You are (not were, are. you always will be) one of my best friends. I need you, Beth, dammit, I need you. I have your wombat I never gave you. I have the stuffed critters you sent me. I was going to send you a jar of cinnamon peanut butter. But none of this happened. And it never will.

I’m angry. I’m bitter. I’m sad. And I love you. I love you so much. I didn’t realize how much I loved you, even though I knew you were one of my closest friends. No one told me how much losing someone you cared so fucking deeply about would sting. I just want you back. But it’s not possible.

I miss you.
One more day
One more time
One more sunset, maybe I’d be satisfied
But then again
I know what it would do
Leave me wishing still, for one more day with you
One More Day – Diamond Rio

Love you forever,
Nora.

1

My Illness Won’t Get The Best Of Me – Or Will It?

image is of a young looking white female presenting person. she is wearing a navy tank top, and a sparkly navy, medium blue, teal, and purple tutu. she is also wearing purple and green butterfly wings, and has on a pink and purple floral crown. i have no idea how you would describe my position - I leapt back because i forgot to hit the self timer so i was caught in action. almost flailing.

image is of a young looking white female presenting person. she is wearing a navy tank top, and a sparkly navy, medium blue, teal, and purple tutu. she is also wearing purple and green butterfly wings, and has on a pink and purple floral crown. i have no idea how you would describe my position – I leapt back because i forgot to hit the self timer so i was caught in action. almost flailing.

My illness will not get the best of me. Some days, it will beat me down. Some days, it will make it impossible to move. Some days, it will make me so sick I have to choose washing the dishes or taking a shower. As I fight along side whatever is making me chronically ill, it’s not going to get the best of me.

To say “the only disability in life is a bad idea” is absolute bullshit. Smiling at the lines of bottles of medications won’t make me need them anymore. Watching all the comedies I want and laughing until I cry won’t make me not be in pain anymore. And so, to say it won’t get the best of me is also kind of bullshit is a similar, although different, vein.

I often see people say “I’m not disabled, I’m differently-abled.” That’s a very problematic term, which you can read about here. I also choose to use identity first vs person first language, which you can read more about here. But here’s the thing: I am disabled. It’s as much of a pair of who I am as my hair being brunette or my skin being white. And to me, by saying things like this you are brushing off the struggles that disabled people face. The micro and macro aggressions we walk (or roll, or hobble) into every single day. It’s complicated and layered, but it has a lot to do with the whole sentiment of “just cheer up, buttercup, and your disability will go away”.

The thing is, my illness does get the best of me some days. Many days. Most days.  But it doesn’t mean that I cannot make the best out of what I’ve been given. I can still dress up in halloween costumes, like pictured. Too bad I’m not a pain med therapy. 😉

There are days when my illness sends me to the emergency room or gets me admitted to the hospital. There are days when my doctors throw their hands in the air and tell me, to my face, they don’t know what’s wrong with me. Why I’m losing weight. Why I’m puking. Why even heavy duty nausea meds don’t always cover it. Why I am so much pain day in and day out. As one of my doctors said recently “It’s 3 steps forward, and 2.5 back.”

Yes, my illness does get the best of me. It gets the worst of me, as well. It gets all parts of me. To say I won’t let it beat me is silly, because I’m not really beating myself. I am happy with who I am. I have accepted that being a disabled person (see? identity first) is a big part of who I am and what my life is like and you know what? That’s perfectly okay.

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Mystery Illness 2015

So, on my private Facebook, I’ve been mentioning how I’m battling Mystery Illness 2015. Well, it’s been nearly a month and there’s still no signs of improvement.

 

Mystery Rash on the back of my neck, not improved with steroid cram.
Off and on cough.
Absurd amount of sleeping.

Yep, this is mystery illness 2015. Mono test? Negative. Strep? Negative. WBC high but we don’t know why.

Add into it, right now, my stomach is actin up. It was fine earlier but now, it’s not. And I can’t get into that doctor until December 8. Ugh.

And that’s your mystery illness 2015 update.

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Ten Things Not To Say To Someone with a Disability

I can think of a lot more than ten, but, you know, we have to start somewhere. I could go on and on for ages about what not to say. Part of being a good, decent person is knowing when it’s okay to comment and when you need to keep your mouth shut. But never fear, Nora’s here to help you out! Aren’t you glad to have a handy dandy Nora to help you not be a total butthippo? 🙂

Image is of me back in 2010, pretending to fly. Let's pretend I'm a superhero, k?

Image is of me back in 2010, pretending to fly. Let’s pretend I’m a superhero, k?

So. Here we go! Drumroll, please.

  1. “Wow! I wish I could lose weight that easy.”
    • You know what? I wish I could keep weight on.
    • Do you know the cost it comes at? It comes at deciding what to eat at what will taste the best coming back up. It’s at the cost of running to the bathroom, because my bowel system is once again staging a mutiny.
    • You want the drug regimen that comes with it?
  2. “But you don’t look sick!”
    • “But you don’t look like an asshole!”
    • Seriously, if I looked as bad as I felt some most days, I’d scare small children.
    • Not looking sick is part of the problem. Doctors don’t take you seriously until you drop below a certain weight, you look a certain way, or you act in a certain way. And even then, it’s a frick-fracking crapshoot.
      Image is of me at Target, taking a selfie in the mirror. I am using yellow forearm crutches. I am wearing a teal dress with a grey sweater, and a rainbow chunky necklace. Not looking sick despite, well, being sick.

      Image is of me at Target, taking a selfie in the mirror. I am using yellow forearm crutches. I am wearing a teal dress with a grey sweater, and a rainbow chunky necklace. Not looking sick despite, well, being sick.

       

  3. “Wow! I wish I could sleep all day, too!”
    • You know what? I feel like I’m sleeping my life away.
    • Do you know how soul draining it is to have days where you walk to the bathroom to pee, then have to take a nap on the bathroom floor because you’re too bloody tired to walk back to your bedroom? Yeah, that happened.
    • It comes in extremes. I either sleep or I don’t.
  4. “You’re so lucky not to work!”
    • I would give ANYTHING to have a job. I have hopes and dreams too, you know. And they were crushed with my diagnosis list.
    • I am literally thousands of dollars in debt for a degree I’ll never, ever get.
    • It’s devastating to realize that your life really has no life outside of your apartment and doctor’s appointments. It’s horrifying to look through your medical documents and realize that you’ve been unemployable for almost your entire life, and it doesn’t look like that’ll ever change. And there’s nothing I can do to change that.
  5. “I could never give up gluten/whatever food you’re allergic to/caffeine/insert thing of your choice here.”
    • Well, what if it was your only option? What if every time you ate *thing*, you threw up? Yeah, you’d give it up pretty quickly too
    • Don’t you think I hate it, too?
    • Welp, it’s better giving it up than dying.
  6. “But all those meds you take. BIG PHARMA WANTS YOUR SOOOUL!” (I am totally imagining this in the voice from the Princess Bride. THE DREAD PIRATE ROBERTS IS HERE FOR YOUR SOOOOULS. Only, BIG PHARMA IS HERE FOR YOUR SOULS.” I’d meme it, but I’m too sick. 😛
    • Um, well, see previous point.
    • Big pharma kinda keeps me alive. I like living. And I should hope you like me living too.
    • Again, do you think I like it? It’s a part of my life.
  7. “You have *insert disorder here?* Wow. I’m sorry.”
    • I’m not sorry. Why should I be? It would be being sorry for who I am.
    • I’ve grieved it. I’ve had my time. And by saying you’re sorry (or worse, that you would kill yourself if you had my disorders) you are saying my life isn’t worth living. You  are saying my life isn’t valuable. And that’s the furthest thing from the truth.
    • Again, my life isn’t hopeless. I don’t exist merely for you to pity me.
  8. “What happened?”
    • Life. Life is what happened.
    • You aren’t entitled to my medical history just because you see me with a mobility aid, or having an off day.
    • It’s kind of like asking a women about her pregnancy. Just, don’t do it. It’s rude and disrespectful.
  9. “You’re so lucky to be able to play video games/watch TV/be online all day!”
    • You’re so lucky I don’t crutch whack you.
    • Some days, I am too sick to even do those things
    • Yeah, well, I wish I was able to go out and have more of a social life vs those things being my interaction. For someone with chronic illness, my phone is my best friend and sometimes the only social interaction I get.
  10. “Why are you using the mobile cart at Target?”
    • Um, because I can?
    • Pretty sure you wouldn’t rather me pass out on the floor, right?
    • Again, you aren’t entitled to an opinion or an answer about my body. I need it. The end.

So, again, there are a lot of things that could be said about and to people with disabilities. I just covered ten of then. What are some of the things people have said to you that you’d like to speak against?