The Return To Innocence

Seriously, you guys, I don't even know.

Last night, I had what appeared to be a plummeting crash of blood pressure and blood sugar, leading to violent vertigo with one-time vomiting, clamminess, cold sweats, passing out, horrible weakness and fatigue. Luckily, our summer housemate, my cerebral palsy group friend Kyle, was there to help out, and my husband arrived home soon after.
All day today, I rested. I slept into the afternoon; I ate small balanced meals; I slowly walked around the neighborhood.
Nope.
Still feeling it.
With Adam being home today and tomorrow, I think my mind feels free to express full-out WHARGARBL in the form of, like, shutting me down, I have no idea. I feel weak, light-headed, foggy, aphasic, exhausted, up and down: It is like epilepsy, migraine disorder, anorexia, fibromyalgia, anxiety disorder, chronic stress disorder, hypertonia, and sensory processing disorder, all at once, all piling up in one Hulk Smash. Even as I type this, my upper body is swaying. I'm taking bites of the baked brie in croissant dough, drinking whole milk, rubbing an ice pack on my neck, breathing deeply and calmly.
This is so, so, so strange.

Like, literally what is this I can't even.

Nnngghh. No. Nope.
*breath*
PAALSYY. *fist-shake*
*also literally*
*also thumb in palm, finger flexion wrist flexion, shoulder internal rotation contracture forearm pronation, elbow flexion, clonus... plus spastic hypertonia anyway and also fibromyalgia flare, also stabbed hips. Because fuck everything, that's why*
...*mutter*

A hot bath was mentioned. I requested the amazing secret to getting in and out of a bathtub when it hurts bad enough to scream. It seems there is no secret, just more pain and doing things anyway, because decisions. Magnesium salts, then. Magnesium oil massage, then. Yes.
AUGH. IT HURTS. CRIPPLE SMASH.
Oh, hey, the narcotics and muscle relaxants and anxiolytics are starting to do things. Heeeyy.
Still hurts, but heeyy. Walking. Look! Stairs seem possible again!
Still hurts, though. Just meh now.

Look, I keep telling them, mild counts. Children who have it grow up. Into adults who have it. Adults who are still disabled. Adults who are disintegrating as they age. And mild still counts. Just because I am not using a wheelchair doesn't m-
Oh, fuck this. I'm exhausted. I already went through it with them about the autism and the partial seizures and the OCD and the ADHD-Inattentive and the dyscalculia and the lordosis. And the pharmaceutical drugs alongside the holistic drugs. And I like talking to educate. But they don't seem to be listening well. They make me tired.
http://cerebralpalsy.org/about-cerebral-palsy/symptoms/eight-clinical-signs-of-cerebral-palsy/
*

http://unstrangemind.wordpress.com/2014/04/20/labels-are-for-soup-cans/
This is beautiful. Although, I've heard the term "identity" used in place of "label" and I think that's a cool alternative. But I, personally, will use the "label" term for myself, only. If someone else is fine with it, I'll apply it with them. If someone is anti-label, I will use whatever they use.

I've seen similar issues in gender: Some genderqueer and genderfluid people who do prefer the terms "male-bodied" and "female-bodied" often get scolded for not using "assigned male/female at birth" - but if that is the term you wish to apply to yourself, nobody should scold you for it or insist you change. If a person doesn't want to use the term "label" for themself, they shouldn't have to. But nobody should scold or insist that others stop using labels as identification.

It's like that whole "You shouldn't define yourself by your disability!" I would ask, "Why not? It is a huge part of who and what I am." Then again, I believe this may be part of a divide between those who were born disabled or acquired it so early in life that it is all they know, and those who acquired it after a life of ability/being able-bodied. For example, I take my being disabled seriously, and I have always seen it as a strong part of myself. However, because I was always told to not define myself with it, I learned to push that part down. Now I feel free to express it, now that I've been surrounded by new friends and acquaintances who feel the way I feel, which is wonderful and refreshing.

So, I had what I considered a palsy victory and agony simultaneously.

Depressive episode gripping me hard enough to draw blood, I walked out - no cane, because medicine and meditative stretchy exercise like whoa - and took the Metro to Twinbrook, walked the ten minutes to Congressional Plaza, shopped, stopped to eat sushi, and carried two bags back to the Metro, right side burning and feeling ripped open while palsy left side felt ghost-like and nearly numb. Got to Shady Grove again, took the bus and stopped at the Redmill Center right near my house community, went to the CVS and bought drug refills, limped and shook and spasmed and gasped as the bus dropped me off across from my townhouse community, walked with three bags that felt like dead weights, stopped to get the mail, went home, went upstairs, collapsed, and very weakly, feebly flailed and flapped and cried out "Yay, I did it, go me!"

I got myself belated birthday gifts, especially because the Rockville Ulta now carries
It Cosmetics, which is my top favorite makeup brand in the world, which I just learned today so it was like a cliche of angels singing. I'd been waiting for my Ulta to acquire It Cosmetics since last year, when the Silver Spring Ulta announced they had the brand and that Rockville would get it this spring. YES. I was also flush with coupons and points so I splurged: I got the new liquid peptide foundation and the new thin-brush peptide mascara; and also Ecotools brand konjac facial cleansing sponge made of konjac fibers, because konjac is one of the most awesome internal and external cleansing fibers in the world.

I was in horrid pain, honestly awful bad bad pain, pain that was like trauma pain... and I was happy. Because PAIN pushed me on. And VICTORY. It was nearly joy. And joy is something above emotion, after all.

I knew that my cane might have made my hands more full. But the fact that I was capable of doing all this without a cane... it was just... well, you know. Hemiplegic spastic ataxic cerebral palsy, spastic hypertonia, fibromyalgia, osteoarthritis, sciatica, lordosis, migraine pain, major depressive episode, autistic symptoms making everything loud and bright and I could barely look in people's eyes despite cheerful conversations. I did STUFF. I did stuff that made me feel good. I will be in pain for days. But I did it! I think the agony will be worth it, the codeine and the tramadol and the baclofen and the clonazepam and the capsule supplemets of devil's claw and MSM and cayenne and mangosteen and noni vinpocetine and oh my gods I can hardly walk and I am shaking all over and my muscles feel torn up and I want to break down in tears.
But I am proud of myself?
*wipes away tears*

Damn, I really hurt...

...and I forgot to buy milk.
It's okay. I have enough coconut cream, coconut milk, and sweetened condensed milk to work with my coffee until I can get to Giant. Plus a hand mixer blender device to whip it good. At Giant I can grab a lightweight jug of kitty litter and a half-gallon of whole milk, and canned cat food. I can bring a backpack plus a tote to see what will fit how, so I can take the cane.
I'm twitching so much. I wonder if this entire day was one big seizure trigger. Fuck.

Now, today, the day after, I am slowly preparing for my first meet and greet appointment with the new psychologist. My last one got too expensive after I switched to Medicare, and this new woman will work on a sliding scale, with my mother willing to help.

Seizure happened in the kitchen. Jupiter meowed and rubbed against me while I crouched. Adam came in and gently lay me on the floor. My eyes were open and blank. Adam touched my face and reached for my mind, and I spasmed and gasped and blinked. I asked why I was on the floor. Adam helped me up and stood me against the large freezer. My memory is swirling. Alicia is holding me. Earlier, Adam said he told his boss, a fellow animal lover, that he needed an extra day to care for his wife. I rolled my eyes and said that was not necessary; that I was fine. Never mind. It was so dark and so white equally braided as order and chaos magics. I was spinning at ninety-nine percent light speed and thirty-five miles an hour. The world was elsewhere. A few seconds lasted a thousand years. Adam suggested I go upstairs and rest. Jupiter is suggesting a cuddle. I am thinking coffee and clonazepam and baclofen. I am made of light and love and pure order-chaos magic in its simplest form. I can give myself the right strength. May be that I can regenerate. As brightly and intensely as a Time Lord. I always shine enough for everyone.

Oh, hey, my long lost theme song.

http://www.youtube.com/embed/Wmd60Kk9Ljk

Gracefully she's circling higher
She has the wind beneath her wings
And looks down on us, she said

Robbed of my innocence
Had no more time to play
I sure got my feathers burned
But I'm stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Eternity is set in her eyes
Throwing sparks back at the world
That'll never die and I think

She was robbed of her innocence
Had no more time to play
She's only a little girl
But she's stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Here she comes, I've been waiting
For my little phoenix

You've got to get close to the flame
To see what it's made of
You've got to get close to the flame
To see what you are made of

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

***

This reminds me, fascinatingly, of chronic pain, invisible illness, mental illness, disability, and the struggles of marginalization for a bodymind that is full of monsters.

http://www.youtube.com/embed/yxPMc-XWOZ8

Phantom voices with no words to follow
At the mercy of the cold and hollow
I withdrew into my sanctuary of silence
My defense

In this moment I am just becoming
Liberated from my cell of nothing
No sensation there was only breathing
Overcome oblivion

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

Waves of melodies once forgotten
Like a symphony across the ocean
Never knew that they could hear my calling
Deep within
Crashing in
Rushing in
Like falling

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

There is no returning to that emptiness,
Loneliness
The dream that lives inside of me
Won't fade away, it's wide awake

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

***

And this one, same thing:

http://www.youtube.com/watch?v=vdG3ECUC-mE

Whenever I wake up
I'm lost and always afraid
It's never the same place
I close my eyes to escape
The walls around me

And I drift away
Inside the silence
Overtakes the Pain
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

Whenever I wake up
The shards of us cut within
Always the same day
Frozen all in the fringe
I surrender to the sleep
And leave the hurt behind me
There's no death to fear
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

So far or right beside me
So close but they can't find me
Slowly, time forgets me
I'm lonely, only dreaming

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

***

And for my new friends in disability and invisible illness, I present my number one theme song.

http://www.youtube.com/watch?v=SJnCHctOeJg

Smash glass against the wall
Curse the music on the radio that the neighbours play.
Door slams, she turns her head
Watches through the window as he pulls away
Funny how your racing brain drives you so mad
When all the while you feel so numb
Too old to be clean far too young to be broken
Like an army we come

Cut back, left behind
I watched you self-destructing oh so many times
Shot down, once again
Sitting in a chair crying what am I going to do with my life?
Just learn to hide the way that you really feel
Never let them know that you're scared
But understand that you're not the special only one
Watch us now, watch us real close

How we all dance with this fire 'cause it's all that we know
And as the spotlight turns toward us, we all try our best to show
We are lost we are freaks, we are crippled, we are weak
We are the heirs, we are the true heirs, to all the world

Let's go build a fire down on the empty beach when the waves are crashing high
White heat purify, as the sparks fly up into the great black sky
Sacrifice these crutches to the crackling flames
Stand as silhouettes against the dawn
It's far too late to try to sleep now, seems I'm never tired any more

I want to dance with this fire 'cause it's all that I know
We are lost we are freaks
And we try our best to show
I am lost
I'm a freak ha ha.

***

Depression Monster is still wrapped around me, steel claws and silver grin, but I am fighting and fighting, and I have many spears.

Husband returned from New Orleans around one-thirty this morning. Rose and Jupiter immediately climbed on him and we all fell asleep in a snuggling pile.
Later today, errands! Petco Unleashed with coupons for Blue food and litter. Trader Joe's for cookies, whole milk yogurt, chocolate hemp powder, trail mix, pumpkin cereal bars, fairytale pumpkins. Dollar Store for calendars. H-Mart for produce and foods from outside North America.
Had a lovely chat near the with from a guy who was from Jamaica, who extolled the virtues of awesome iron-rich burro bananas and said that his grandmother, who ate them every day on The Island, was 130. She probably did lots of things. The man himself looked barely 40 but he could have been 50. I asked him which bunches of burro bananas looked best. Yay, snacks.
And we got a pure honey nut spread, roasted seaweed snack packs, tamarind paste, demerara sugar (4 lbs for under 5 bucks), black plums, pomegranates, red leaf lettuce, and stuff I forget now.
I have taken more medication to ease this pain, I have meditated with cartoon comedy to beat back the Depression Monster, and I now will get back to writing.

This was originally written around 1:00 PM:

So, er. Odd morning, that. I barely slept and kept waking up every two hours. When I finally remembered dreaming, I received a hideously intense, gruesome series of nightmares that kept killing me with piano wire and energy alien possessions. The piano wire felt damn real. I had to watch the alien slice all my bodies into pieces with blue liquid for blood. My pain receptors had a party, because I was physically feeling every bite and slice. Don't you hate when that happens? Damn formless energy aliens with their piano wires, making people dead and stuff. And also, I kept running from dreamplace to dreamplace without clothes or only a small covering, surrounded by people too high and drunk to care. I kept jumping from body to body, while a formless energy chased, possessed, and killed me. And also I was coughing up blue liquid right before the alien piano wire deaths. Lots of those. I hate you too, brain! I'm sure it all symbolized my ultimate rejection of aspects of myself and discarding bits I dislike, and also I'm not saying it was aliens but it was aliens. And pain receptors.

I was woken up by Jupiter biting my gemstone bracelets, his signal for me to pet, scritch, and brush him. When I was having trouble moving, he grabbed my arm with his paw and pulled it toward him, then carefully touched my cheek, until I lifted the other arm to pet him. He did make a sound, he just kept touching me with his little lion paws and nudging me with his little lion nose. (And he was not brave at the start but he's gotten braver, cough.) I wound up brushing all three cats with the first metal brush I could find, and it made them happy enough that I was able to disregard most of the worst of the dreams.

And now it still feels like there is piano wire under my skin, in my muscles and connective tissue. I just finished my shower. Also, I stepped on the scale for the third time in a few months, and oh, hello, much lower weight, haven't seen you in a couple of years. Um... how've you been? I was not expecting you? Hi? That's why my jeans were loose and my ribs were prominent?
I'm going to eat more peanut butter and make oatmeal. Er.

Also, allergies! Gnah! *not-fun headbanging*

In between wild writings, I have been at http://www.catsplanet.info/ squealing over photos of tiny kitten feet.
I mean, come on. http://www.catsplanet.info/how-can-you-say-no-to-this-sweetie-pie
Seriously. http://www.catsplanet.info/i-just-realized-it-was-my-cake-day
AUGH. http://www.catsplanet.info/just-doing-my-stretches
Tiny kitten feet are mesmerizing.

So, husband treated me to IHOP new Tiramisu pancakes. It is actually good. They put in real coffee. Adam's birthday was yesterday, July eighth, and it was spent with a beautiful husky malamute mix named Haruka, owned by our friend Adam M., who was passing through to hang out. Good times were had.

Also, I had a panic attack out of absolutely nowhere. Then again, that is why they are panic attacks.
Panic attacks are such wild ravenous monsters. I am helped immensely by caffeine and clonazepam and various Ayurvedic tonics and lots of slow careful breathing with slow careful stretching (except anything that lowers my head; I get too dizzy and panicky again). But hearing, feeling and sensing my heart about to explode is terrible.
I am becoming calm.
My cats are surrounding me with adoration.

I'm going to apply some of my favorite cosmetics...
(Buxom Full Bodied Lipstick in Provocateur, It Cosmetics Vitality Lip Colors in Pretty Woman, In Love, Ruby Slippers, Tarte La Lip Creme Lipstick in Stiletto Red;
Lauren Brooke Creme Concealer in Warm Light, Tarte Creasless Maracuja Concealer in Light, It Cosmetics Bye Bye Concealer, Erzulie Perfect Match Cream To Powder Mineral Foundation in Light, Urban Decay Naked Skin Foundation in 2.0;
Too Faced Exotic Single Eyeshadow in Midnight Mist; Urban Decay Eyeshadow in Gravity; MAC Eyeshadow in Contrast; Buxom Eyeliner in Sapphire)

...and convince myself that nobody hates me and that I've done nothing wrong and that everything is all right.
There is this child inside me that firmly believes that no matter what she does, how she does it, or why she does it, someone will pull her aside and say in a low voice, "Honey, you shouldn't have done that, it's rude." And she won't understand why because parts of her brain just keep going and the parts of her brain dedicated to social cues and politeness are sleeping. And she is just afraid all the time that she has said something wrong and then she just waits and waits to be pulled aside as chastised. Even when it never happens. She waits, and she waits, shivering, because she is so completely convinced that everything she does and is will be scrutinized and scolded. I really must find a way to soothe her.

You guys, I amaze myself. I've been writing helter skelter all over the place: Novel, stories, novellas, blogs, facebook, notebooks with various pens, everywhere... in the middle of a postictal migraine and insanely horrific agonizing chronic pain flare-up following recovery from a panic attack. If I didn't have a computer or paper I might write on the walls. I hurt so badly I have no idea what I'm doing. I feel half fire and half water. Wild and raging, and all I want is a crackling bonfire and a rushing river.
I doctored up a photo of myself and it came out half gold light and half blue light. It looks inhuman. But part of me adores it so much. My face is two different parts. I am two entities in one. When I burn, I am cool. When I am cool, I burn. It is ying yang, dragon phoenix, up and down, left and right, I don't even know. I don't speak out loud except to my cats, I just speak through Story. So much Story inside me.
That rock. That rock that my husband gave me, the rock that he held while standing in Room 217 of the Stanley Hotel, in which Stephen King wrote "The Stand" and used as an inspiration for "The Shining". That rock is still next to my laptop. I am covered in words. I am filled up with Words. I may disappear into Story. I may not even see the world until I have to.
Is this what it is like to live in the land of the Fae and then come back to the land of humans?



Maybe it was the super moon. Maybe it is the heat from the sun now. Maybe it is anything.

Why is it that, in most dreams where I am in physical danger, I am unable to scream or move quickly?
My last dream involved a bad fall and crash at the top of the stairs, while a large group of people were downstairs having a small quiet party. Something supernatural was with me, something insidious. I grabbed the stair ledge and pulled myself up to a kneeling position. I yelled my husband's name, but it was only a whisper. I couldn't call for help, not with the shadowy creature surrounding me. I was moving so slowly. It felt as though nobody was in the house but me, me and the cats.
And abruptly, I realized that nobody was in the house. Adam was at work. There was no party. The cats were all downstairs. It was only me and the shadow entity. I struggled to call on my internal resources, my spirit guardians, but even my psychic voice was muffled. I was not afraid. I was determined. I was badly injured, and I only had myself, and my powers to create weapons and defenses were drained. I stopped trying to stand. I knelt there and mouthed words, calling on the water in the bathroom, the air circulating around the house, the earth under the house, the fire downstairs used to light the gas stove. I pulled in all into me, and with a desperate burst, I unleashed it. The shadow creature shrieked and vanished.
Without any warning at all, the house filled with presence again. There was that quiet downstairs party. I whispered my husband's name again, struggling to turn it into a cry. Someone must have heard. Adam came up the stairs and found me, sagging against the door of the bathroom, my nose bleeding. He spoke to me. He half-carried me to the bedroom and helped me lie down. He brought damp towels and tissues and water with electrolytes. I managed, somehow, to tell him that a negative spirit had entered the house and stole my strength, and I pulled all the elemental power I could to drive it away. He was very proud but also puzzled, since the house was supposed to be powerfully shielded and guarded. I was crying but I didn't mean to cry. It was just a reaction without intention. He stroked my hair and curled up with me, and me took my hand and fed me energy and power and strength, and he said, "Go to sleep, my darling. I'll be monitoring you through our psychic bond and everything will be okay. I will strengthen the wards." He needed to check on our friends. He would back be up soon.
The dream ended there.

It has been something of a recurring thing: My slowness in dreams. My exquisite agony in dreams. My whispering words in dreams. Sometimes I can barely walk for the pain in my hips and knees. Sometimes I can only speak with thoughts instead of physical words. Sometimes my body is wrapped in a floating translucent shell and it is the only way I can move. In my dreams, the pain is so much worse than in reality. But I have access to weapons of all kind and I feel safe, even if something horrible grabs me.

When I was a child, I had flying dreams every night. Even astral projection. Like my father and cousins in their younger years. And if a harmful person appeared, I just waved my right hand fiercely, shouting "Shoo! Shoo!" to make then disappear.

When I was a child, I dreamed of dragons, of ancient tortoises, of unicorns mixed with white tigers, of phoenix birds with feathers of every color. Dragons have never been dangerous to me. Even if some were, there were always other dragons who were benevolent.

It is why I always bristle when I read an article comparing chronic pain to dragons. The only way I can see such battles happening is dragon against dragon. And I am a human amalgam of dragon, phoenix, tortoise, unicorn, white tiger, and fae, wrapped in the skin of a moonlight witch.

Then, why do my dreams cripple me? The only reason I can think of is to teach me to use the insides, the powers coming from my spirit and not my body. My body is very important and vital to me. But perhaps not so much in my dreams.

And I think this piece of art, beyond anything, is one of the greatest ways I can understand myself. Every time I look at it, I weep. I even have that same cane. I know Shinga and I barely know each other, but she knows chronic pain. She knows what being a warrior means. She was in the US Army and was badly injured and treated so poorly during therapy that she has severe PTSD. She is disabled badly. She knows battles. And I want to hold her and hold her and tell her what this means to me.

http://shinga.deviantart.com/art/Awaken-Warrior-and-Rise-378439320

(Note: Please please refer to Shinga before borrowing or using this image. Please use the Deviant Art link. This is her work. Copyright Shinga. The only reason I displayed the actual image was in case someone can't click on the link.)

Call me Courage.
It takes a lot of strength to talk about life like this.

So, I just "woke up" splayed uncomfortably in my comfortable leather task chair, head lolled to the right, mouth open and drooling, left side full of hemiplegic hypertonic hemiparesis, right side spasming in its own way, brain stuffed with cotton, voices inside me screaming "GET UP, GET UP, OPEN YOUR EYES, DO IT NOW. JOANNA! WAKE UP!" Voices I recognized as Alicia, Serena, Amara, and Amber - all four of my spirit guides, aka healthy multiplicity selves, aka characters I created long ago that took on lives of their own deep inside my damaged brain. I have never, ever heard them in chorus. I felt something like a massive SHOVE - very similar to a hypnic jerk, which is actually extremely common during testings for epilepsy. Hypnic jerks, also known as hypnogogic jerks, night starts, and sleep starts, are those weird sensations you get between deep sleep and waking when you suddenly feel as though you have fallen onto your own bed from high above.
There was no panic in those cries, simply intensity. They were all desperate to bring me around. See, Alicia is the one who guides me through the seizures and brings me to Serena, who guides me though the pain. If needed, Amara steps forth to ease the anxiety, panic, and fear. And although Amber has kept silent and hidden for decades, Amber is the one who soothes my entire soul and my entire consciousness with a blend of magics and quantum physics that I still cannot translate into common words. However, they have always been separate and individual. The only ones who have ever communicated in any way have been Alicia and Serena, if only to pass me between each other with nods and whispers.
And so I awoke, or came out of the seizure, twisted and deeply exhausted from cerebral palsy complexities, compounded by fibromyalgia, sensory processing disorder, synesthesia, and hypersensitivity. For several agonizing moments, I did not know where I was - and the only reason I knew my own self was because the Guides poured all my memories quickly into my mind, into the live, non-damaged bits of my brain. I know that doesn't make any real medical neurological sense, but I cannot explain it any other way. The only reason I am typing this up is because my hands are moving of their own accord. I have a silly feeling that Serena and Amber might be helping me. Keep in mind that these women are not "real" - they are fictional characters. And they know it. But they are parts of my mind and have always been. I am still wracked with deep anxiety, and Amara is wrapping me in the most comforting... things? Images and sensations of fabrics. Ideas of beautiful imagery? Tiny mewling soft kittens happy and adored and warm? Anything to keep me calm and happy and anything to keep me from breaking down in screaming tears. I can feel an episode of clinical major depression creeping up on me.
And I still do not know why any of this is happening. I have lost small memories of today. I do not mourn them too much. I just want to feel better.
Can someone tell me a story, please? Any kind of story?