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.

When your disability is a bad attitude

Image is of me swinging on my churches a few Christmases ago. I am wearing a camp shirt and sheep pajama pants. I have put Christmas lights my crutches.


For the most part, I am a bubbly happy-go-lucky person. Being extremely introverted, on the autism spectrum, and having anxiety (confirmed general, possible social) this sometimes surprises people. If I don’t know you, I’m ever so quiet. If you do know me, you might wonder if I have an off button and if I know how to use it!

For years and years, I’ve been told the only disability in life is a bad attitude. I can have a good attitude all I want, but smiling at Twizzlers will not make the gluten come out of them. I can be my happy-go-lucky self, but it doesn’t mean that there are days where I have crippling pain. I can laugh and love, but it doesn’t mean I’m not depressed.

To say “the only disability in life is a bad attitude” is inspiration porn and it is ableist. You know what? I don’t have to be happy. When people say that people with disabilities should be happy all the time, well, are you, able-bodied person? Do you have days where life gets you down? We all do.  We all have those days where life gets us down.

If I have a bad attitude, don’t call me out for it. If I have a case of the grumps, don’t tell me to smile. If I seem upset, don’t belittle me. Living life with chronic illness is HARD and I shouldn’t have to live up to your arbitrary use of a “good attitude”.

Illness + Sleep = Nope.

Image is of Maria from the Sound of Music, dancing in the fields. Text says "Look at all this sleep I'm not going to get."

Image is of Maria from the Sound of Music, dancing in the fields. Text says “Look at all this sleep I’m not going to get.”

I feel like many people think the chronic illness life is “yay! you can sleep all you want! i would LOVE to sleep that much!”

You know what? So would I.

Instead, I wake up several times a night in pain.

Instead, I wake up several times a night gasping for breath.

You think it “must be nice” to take a nap in the middle of the day?

I sometimes cannot function without that nap. That’s right, cannot function. Or I literally just conk out. I have no choice. I don’t realize I’m doing it.

Imagine sleeping all you want… but never being rested.

Imagine having all the time in the world to sleep, but always being exhausted.

Imagine never, in your life, feeling rested. Imagine people asking how much sleep you’ve had, and being shocked at how little or how much. Because there is no middle ground. It’s extremes, no matter what.

Instead, it’s just something that happens because my body crashes.

Not because I have a choice. Not because it’s “great” or “wonderful”.

It’s awful.

And that’s on nights I can sleep, not on the days where I go over 48 hours with no sleep, because I physically cannot.

Chronic illness does not equal “ALL THE SLEEP!”

I wish it did. That’d make things easier.

give in to love, or live in fear

Image is of me holding up a sign with words written in many colours. The words say "LOVE IS THE MOVEMENT. MY GOD IS LOVE."

Image is of me holding up a sign with words written in many colours. The words say “LOVE IS THE MOVEMENT. MY GOD IS LOVE.”

So, once upon a time (that is, back in high school), I was anti homosexuality. I hate saying that. I feel disgusting saying that. I feel like it’s a part of my life I should hide. That whole “God made Adam and Eve, not Adam and Steve” thing? I thought it was the most clever thing EVER. I thought it was amazing! I thought I was speaking in love when I called people out. I thought I was, you know, being a good little Christian girl and looking out for their souls. I was mistaken. I was wrong. I was cruel. I don’t want to think about the poems I wrote (yes, I wrote anti gay poems. I cringe majorly).

But the thing is, people can change. It doesn’t make it right. It makes it wrong. It doesn’t mean I didn’t hurt people with my words and feelings. I did. I hurt people who are now my friends. I hurt people before I knew them. I was a hateful person, even though I thought I was speaking in love. Even though I thought I was being kind and compassionate. I wasn’t. I was far from it.

What did it take for me to change? I read stories. My heart started breaking. I realized I was using love as a guise, I realized I was using love as a reason to hate. It sounds counterproductive, doesn’t it? That I was using love to fuel hatred? I thought I was being so kind and caring and compassionate. I wasn’t. I was wrong.

I studied the original Greek and Hebrew texts. I prayed. I wept. I talked with friends. I talked with people deeper in the faith than me that I trusted. And I came to realize that using my love to fuel hate was wrong. I came to realize that there was something greater I could do with my so called love – I could rally to make a difference.

Instead of trying to change people for what I thought they were doing wrong, I could pour my energy into making a difference in their lives. I could be a kind, compassionate friend. A listening ear. Someone who wept with them when they were mistreated. Someone who stood up for them when they needed an ally. Someone who was ready and willing to be a voice for them.

It isn’t easy to admit that you’re wrong, you know. It isn’t easy to admit that you were once filled with hate. Am I ashamed of it? Yes, yes I am. But I know now, with all my heart, I am no longer that person. I can love. I can teach. I can learn. Anyone can. People can change and people can mature.

I’m sorry I was a bigoted asshat. I am that way no longer.

Love is love.

Love knows no gender.

Love is for everyone.

And I fully believe, with all my heart, that God feels the same way.

call it torture, call it university

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

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

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


Your heart will be heard through your unspoken word through generations to come

I woke from a dream last night; I dreamt that you were by my side. Reminding me I still had life in me. I remember you like yesterday, yesterday. I still can’t believe you’re gone. I remember you like yesterday, and until I’m with you, I’ll carry on. Every lament is a love song, yesterday, yesterday, I still can’t believe you’re gone, every lament is a love song, yesterday, yesterday, so long my friend, so long. – Switchfoot, Yesterdays.

It’s hard to believe it’s been four years since the guy who taught me there was a God outside the fundamentalist view of God existed. The guy who’s first profound question to me was “What is your favorite type of cheese?”. The guy who once peed in a cup for me. The guy who saved my life. One of the few who has physically seen me cry, and openly wept with me. Who motivated me to go into the ministry.

I forever regret the fight we had summer of 2010. If only I’d known then what I know now, but I can’t change the past, I guess. But I wish he could have seen the person I became. The girl who decided to become a hospital chaplain. Who had two back surgeries. Who struggled. Struggled. Struggled. But yet, still had her faith. The shaken faith stayed. And it’s thanks to him.

Jesus has overcome, and the grave is overwhelmed
Victory is won, he is risen from the dead

And I will rise, when he calls my name
No more sorrow, no more pain
I will rise, on Eagle’s wings
Before my God, fall on my knees
-Chris Tomlin, I Will Rise

How fitting now that the song we often had on repeat was I Will Rise by Chris Tomlin. It was even at his memorial service.

I admit the childish, immature side of me is jealous. Jealous that he is finally free of pain, at a younger age than me. Jealous that he gets to meet his saviour, his redeemer, his jesus while I am still here, longing and waiting.

It somehow gets easier, right?

It’s been a long day without you, my friend
And I’ll tell you all about it when I see you again
We’ve come a long way from where we began
Oh, I’ll tell you all about it when I see you again
When I see you again

If only it were a choice

Image is of me wearing my reading glasses, plopped sickly on the bathroom floor with my golden torbie-kitty Athena plopped on my back.

Image is of me wearing my reading glasses, plopped sickly on the bathroom floor with my golden torbie-kitty Athena plopped on my back. This picture was taken in May.

Soon, I will write about my trip. Soon, I will share pictures of my trip. But today, today I am sick. Today I am in pain. Today I feel awful.  Today, I want to badly to feel normal. More than anything, I crave normal.  More than anything, I crave living a life without pain. Right now? Right now it is 5:54 am. The medication I need to feel human, the medication I need to not feel as much pain, the medication to stop the swelling form my bug bite, the medication I need so I don’t cough when I lay down, that’s across the room. And even though it’s only ten steps away, right now it’s far. It might as well be ten miles. It might as well be forever away. And that’s just the physical side. Emotionally and mentally, the energy is gone too. It’s so much more than physical. It’s so much more than being thirsty. It’s not being lazy – I hate the lukewarm bottle of water beside me. But I’m too sick to get up and get some cold water.

This life isn’t a choice. I can’t count the number of people who have told me how lucky I am. How nice it must be to be able to sit around and do nothing all day. To watch all the Netflix I want. To play all the video games I want. But my life? My life is hardly doing nothing.

I won my battle with social security. Victory number 1. I am fighting for my Medicaid and Food Stamps back, thanks to a screw up I made (I flipped my housing and Medicaid deadlines). My days are spent making phone calls, avoiding phone calls, sending emails, avoiding emails, shuttling to doctors. And trying to actually enjoy life in-between. Doing the things outside my apartment, hell, outside my TOWN that I love doing so badly.  But right now?

I can’t even get up to get my own medication and water. I can’t get up because it hurts too much. If I move ever so slightly, oh, holy ow.

If only it were a choice. If only I could choose to be happier. If only I could choose for the pain to go away. It would be so much easier, wouldn’t it?

But that’s not how my life works.

(Part of) the problem with Autism Speaks

This may come as a shock to you, but I don’t like Autism Speaks. Okay , it really isn’t that shocking. I don’t like Autism Speaks. That’s pretty well known and well documented if you know me. And if you don’t, surprise! Now you do.

Why do I have such strong hatred for Autism Speaks?

Autism Speaks doesn’t just want to “cure” autism. They want to eradicate it. They want to eradicate US. They think the world would be better off without us. That we are merely burdens.

They support ABA therapy, which is problematic. Many people think ABA is a good thing, but it is not. 

They think stimming is a bad thing, and use words like ‘quiet hands’.

Above all, Autism Speaks refuses to see the beauty in autism. They refuse to see that we are more than puzzle pieces.

Autism Speaks tells us that we are not worthy. That we would be better off dead. They applaud and lament parents who murder their children because they couldn’t handle the burden… but not a word is spoken of the suffering those children go through.

They think that people who are non verbal have nothing to say. They refuse to learn to communicate in other ways, be it sign language, assisted devices, etc. Not able to speak does not mean nothing to say. Far and far away, no.

They use tactics like Bleach Enemas. Yes, this is true. No, this is not an urban legend.

Autism Speaks hurts. They do not have a single autistic person on their board. They do not speak for us, no, no they do not. They speak in PLACE of us. They speak for what THEY want, not what WE want.

We are not burdens.

And we will not be silent.

You are hurting us, Autism Speaks. We are not voiceless like you think we are. Just because we sometimes get our senses overloaded, just because we sometimes don’t understand social cues, doesn’t mean there is anything WRONG with us. We are the way we are. Don’t change us.

My name is Nora, and I will loudly and vocally oppose Autism Speaks.

Image is one of my favorite pictures of myself, from fall of 2006. I am a female-presenting super pale person. I have long, wavy reddish-brown hair. I am wearing layered shirts in various shades of green, a denim headband, and a pink backpack. I am holding a cup of coffee in front of a display of Playstation 2 Games.

Image is one of my favorite pictures of myself, from fall of 2006. I am a female-presenting super pale person. I have long, wavy reddish-brown hair. I am wearing layered shirts in various shades of green, a denim headband, and a pink backpack. I am holding a cup of coffee in front of a display of Playstation 2 Games.

A Video for Beth

Hello. My name is Nora, and Beth is one of my closest friends.

I am currently overseas on holiday, and so I couldn’t make the memorial.

So I spoke with Matt, and he said I could record a video message to be played.  [looks down, begins fiddling with necklace.]

Beth and I met about nine years ago on a message board we had joined to discuss baby names.

We quickly bonded over a love for baby names, over a love for grammar, even though my grammar in this absolutely sucks because she’s not here to correct it. We bonded over a love for the Beatles, and a capella music, and all things that were just fun and exciting like that. [opens hands, then clasps hands together]

We also bonded a lot over our health issues, both mental and physical, as that’s something we both struggle with.

Beth came to visit me last summer in Minnesota. We had a lot of fun, and that’s where some of my favorite memories of her come because, since we met online, it’s the first time we actually met in person. And so that was really nice that I have those memories and those pictures. [looks off to side]

Beth and I shared a love for the Muppets, so if I was excited about something [opens hands] that she  didn’t even really give a crap about, I could be like, “Woo, Kermit flail!” [waves hands] And she would join with me in my Kermit flailing [waves hands] because that’s the kind of person she was. Even if she honestly didn’t care at all about what I was talking about [smiles], because she loved me and because she was my friend.

She was there for me. In late night pain flares, in late night hospital visits, late night so many things, Beth was always there for me. She was always the person I could text, or facebook, or combination thereof. One memorable month when I was in the hospital, we literally exchanged thousands of text messages.

Beth would often tell me that she didn’t think anyone would miss her if she died. That if she died, everyone’s lives would be easier. And I can tell you that that’s the furthest thing from the truth. I miss her a lot. She’s been constantly on my mind since she died, and she was constantly on my heart even before that. I can say that this world is a darker place without her light shining on it. I can say that this world is not anything like it was before.

Beth truly made my life better, and I am so blessed to have called her a part of my family of choice. Not many people are lucky enough to have someone like that, someone who they truly love, who they can confide in anything, and who they know they’ll literally take their secrets the grave—as Beth did for me, and I’ll return the favor for her.

Beth, I love you, and I miss you, and I really hope that in the afterlife you’re at, you’re finally pain-free, both physical and mental. I hope that you’re enjoying where you are and just know that, [lifts hand to shoulder] to quote a Mercy Me song, if home is where my heart is, then I am out of place, because I am just so lost without you. And I love you. And I miss you. [brings hand down to side]

Matt and Gabriel, know that Beth loves you a lot. Even when she fought with you, even when she was angry with you, her love for you two never changed. She loved you with all her heart and I know without a shadow of a doubt that she still does. I love you guys too, and you know that I’m here if you ever need anything. Thanks.

A very special thanks to Gabriel Arkles, who transcribed this for me so it could be accessible to everyone – those on screen readers, those with no sound on their laptops/tablets, or those with limited bandwidth for videos. THANK YOU SO MUCH.

The plane, the plane!

My flight from MSP to LAX was pure hell.

It was cramped. Overcrowded. And I was forced to hold my crutches.

You read that right.

Every other plane would have put them in the overhead bins, and had they not fit they would have been other options.

But because it was overpacked and overcrowded, I had to hold them.

It sucked.

And I had to struggle with all my luggage on. I had my small object, my backpack, and my med bag (which I was entitled to as an extra carry on as it was purely medicine). No help. From anyone. I was told I would have wheelchair assistance. Extra boarding time.

I got none of that.

It was awful. It sucked.

The international haul was better and LAX to MSP back home a couple weeks later was improved but dammit, United.

You need to improve your game.