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Persephone, Asha, Hecate

May 2015

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Oct. 26th, 2037

Persephone, Asha, Hecate

New user name, new self

Hello from the LiveJournal user formerly known as BrightRoseFox.
Due to a complex thingy involving problems with emails and such, I have changed my LiveJournal name, my Yahoo name, and my Facebook name.
Everything is now BrightLotusMoon.
If you know me well enough, you know why I am now BrightLotusMoon.
So, yeah. Just FYI.

Also.
Dear Lovelies:
Not only am I feeling so much better, I truly believe I am worth everything that people say I am. I have been getting messages, emails, phone calls, and comments from friends who have told me what I mean to them. I have been amazed and heartened and lifted and joyous.
I may be a moonlight witch, but I cannot access the magic of the moon without accessing the magic of the sun. And the moon is always there, her power extreme eternally. And the sun is always there, his power intense forever.
I feel bright and powerful and in full bloom, like a great lotus blossom beneath the full moon.

Jun. 8th, 2036

Persephone, Asha, Hecate

I'm not you. You're not me. But we're people. Yay us.

So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
Read more...Collapse )

Jun. 14th, 2035

Persephone, Asha, Hecate

My brain to your brain. To the universe.

...hush now; let me speak...
And sometimes there are days when all you can feel is that pain-filled urge to fly and fall, and all you can think is "If only I could make the world fly and fall with my brain; if only I could win my own game, always."
Read more...Collapse )

May. 21st, 2015

Persephone, Asha, Hecate

Also nightmares!

Migraine all night! Possibly migraine all day! If the house phone rings once more I might cry!

Also fibromyalgia flare, but whatever. BRB, more Gatorade.

Callisto literally will not leave my side. She curls back up against my torso whenever I get back into bed. I love this cat.

Apr. 22nd, 2015

Persephone, Asha, Hecate

The Neutral Zone is comfy

What started out as a random Facebook comment on a friend's post became this.

My problem is this whole "positive energy good, negative energy bad" mindset. It feels too much like brainwashing. Hell, I got kicked out of a space for pointing out that mentally disabled people can't really just wake up and change like the meme said. I find negative energy useful. I'm an extreme preterm cripple with two dozen documented disabilities, struggling to bring down a monster organization that seeks to eradicate people like me.
I'm considered too mentally weak to harm anyone, thus I always have the upper hand when I bring out my stabby intellect which while scarred and marred by cognitive disorders can still bring down a conversation.

I am loathe to apply only positive energy TM as all it does is bandage my hurts until the next blow. Negative energy fills a void caused by inability to be part of the social wheels of a society that values sameness over my silence - how dare I not look them in the eye while preferring text over mouth speech. Negative power enables me to move and reach and yank down the veil, paying sharp attention to the man behind the curtain. They urge me to think only positive thoughts like it would be a healing thing. My mother just wants her baby healed. And I understand. But with disorder and chronic pain comes knowledge that positive energy cannot exist without negative energy taking its hand and whispering "watch out for those sharks and those lions, I think that person back there has a knife, should we run, we'll be safe in here." It whispers, "you are horrible at everything, what is the point of you, just let the lions eat you. But wait! Look! Look at the wonderful thing you just did. I made you stronger, didn't I? You defied me and you pushed and are stronger."
Positive energy would have been a shiny cheerleader oblivious to my barriers, insisting there was no walls or blocks, only beautiful success. And we need both.

I may only be talking about myself here. But living a full cripple life under both the medical and social models of disability makes me see the world as a huge plain of predator, prey, and balance. Some prey become heroes to fill a needed role and stand between worlds. Some prey become activists and sound alarms and shout down predators from behind shields they built. Some predators learn and go for other prey. Balance always means that someone else has to die for you to live. It means standing in the neutral zone watching and saying "if I don't survive, tell my wife hello." Sometimes it means having to step aside and apologize while encouraging your crippled kid to run without those leg braces. It hurts. Balance always hurts.

Oh wow. I'm sorry. I was reading a Seanan McGuire story about balance and life and I just went wandering. I'm sorry. Please tell me to shut up now.
Persephone, Asha, Hecate

Balancing self, half the seeds Part Two

I am super proud of myself for moving forwards on my private therapy routine. It is probably not going to show externally for at least a few more weeks. But I remember that secret promise to myself that I wrote on a hidden dark place. I think it will come true. I think soon my head will start filling in cracks that have been growing for a few years. I could call it healing. I am wary of - and also weary from - the word healing. People who really think some disabilities could be healed without needing to re-damage and reconnect the brain itself. I don't want to be some other person. They just want me to be like them.
It can't be healed. Only I can soothe its own pain and any pain it give, only from the inside. I don't want to look at the surgeon's tools.I find my own ways, so it will not be the healing you assume.

Apr. 19th, 2015

Persephone, Asha, Hecate

Balancing self, half the seeds.

My favorite author, Seanan McGuire, posted my favorite short story yet from her collection of the Velveteen stories. Go buy her books!
http://seanan-mcguire.livejournal.com/619285.html

So, in thinking about one of my dearest matron goddesses, Persephone, I saw a bunch of stuff from my Facebook friends celebrating the true story of how she actually went with Hades willingly, in curiosity. And I am really thrilled. We need to spread the true story far.

Even my Facebook profile photo celebrates the love between the two. The photo is an altered version of my LiveJournal profile photo.

Tuatha Cait Sidhe Mix
****

Experimenting. Because color is art. Surrealist art fun yay. Psionic Feline Time Lady is made of faded existence, existentialist eclectic paganism, and stars. Always stars.

"In the best known version of the Greek myth, Persephone is dragged down into the underworld by Hades, whose title is 'Pluto.' But in earlier, pre-patriarchal tales, she descends there under her own power, actively seeking to graduate from her virginal naïveté by exploring the intriguing land of shadows. 'Pluto' is derived from the Greek word plutus, meaning 'wealth.' Psychologist James Hillman says this refers to the psyche-building riches available in Pluto's domain. Hades, he says, is the 'giver of nourishment to the soul.'" - Rob Brezsny

"I am channeling my matron goddess Persephone today. In the original myth, she chose to descend into the world of Hades in order to gain knowledge of the shadows. Hades had a power to nourish the soul, which patriarchal translations misinterpreted. There was no abduction. There was no assault. I always sensed something beyond the stories.
In my own Joanna way, I see Persephone as brightness and Hades as darkness. The lotus and the moon. Mage of light and mage of dark.
The story of Persephone and Hades is probably one of the most misunderstood, misrepresented, and mistaken relationships in mythology. I have never been so relieved to see my suspicions confirmed."

I am still obsessed over the original myth of Persephone and Hades - how she so willingly and deliberately descended into the shadows, how Hades in fact was nourishment for souls. I grew up knowing that Persephone was one of my goddesses but I didn't like the patriarchal story. How wonderful and relieving to know that there never was a kidnapping. The more I meditate on my connection with their relationship, the more I feel powerful, relieved, relaxed, and free. I may one day figure out enough lucid dreaming to really communicate with the part of the gods that resides in my Higher Brain and Subconscious mix. You know, the Quantum Psychic Consciousness.
Oh. I'm professoring again. Cough.
In conclusion, polytheism is awesome and if you can connect to the deities that call you, it can be enlightening.

**

Turquoise tint
Blue wash tint.

I am still the Snow White Fae Warrior with Unicorn's Spiritual Healing, and Dragon's Supreme Vitality, and Tiger's Sensuality, and Tortoise's Content Wisdom, and Wolf's Instinct and Freedom, and Raven's Magic Mystique, and Fox's Perceptiveness, and Butterfly's Transformations, and Bear's Strength, and Phoenix's Eternal Renewal.

I rarely feel any of this. This is why I write and create characters who embody those totems. I am shy, introverted, withdrawn, afraid, nervous, anxious, awkward, inept, stumbling, weak, quiet to a fault, full of so much love that I never know what to do.

My spiritual parts are made of Magic and Quantum Theory and Multiversal Synchronicity and Polytheistic Agnosticism and Subconscious Psychic Higher Brain Functionality. And disability. And understanding the unique intricacies of whole brain disabilities that are my person.

I will never know who I am. I will always love finding out over and over.

****
Persephone. Proserpine. Hecate. Hekate. Goddess. Mentor. Teacher. Master.
Seasons. Equinoxes. Sabbats. Wheels.Veils. Minds. Gateways. Crossroads. Magic. Quantum. Cosmos.
Indigo. Red. Gold. Silver. Amber. Copper. Crystal.
White. Black. Nothing. Everything. Order. Chaos.
Nature. Flowers. Fruits. Plants. Seeds. Water. Rivers.
Dark. Light. Sky. Earth. Day. Night. Life. Growth.
Otherworld. Afterworld. Spirituality. Science. Electromagnetism. Psychic Energy. Elements.
Love. Beauty. Knowledge. Understanding. Acceptance.
Companion. Queen. Lady. Lover. Partner. Power.
Interpretation. Choice. Freedom. Questions. Answers. Studies. Always.
Magic. Supernatural. Paranormal. Parasychology. Psychology. Biology. Neurology. Neuroscience. Neurodivergence. Physiology. Physics. Experiments.
Art. Craft. Need. Desire. Reseach. Belief. Faith. Truth. Fact. Fiction. Mentality. Hemispheres. Universes.
The colors of magic. The art of magic. The science of magic. The study of everything. Synesthesia. The scents of magic. The transdimensional pathways.
Above. Below. Beyond. Between. Parallel. Fringe. Outside. Within. Synchronicity. Serendipity. Collective.
Humanity. Soul. Consciousness. Exploration. Subjectiveness. Objectiveness. Beholder. Eyes. Dreams. To meet. To feel. To know. To be.
You are you. Let go.
Be you.
Explore.

***
(Photo taken via Samsung Galaxy S4. Color, Brightness, Portrait effects edited by Samsung Galaxy S4 Photo Editing.)

I have become comfortably peaceful. Comfortably tranquil. Comfortably serene. Meditation and zen stretching, aka my own personal modified version of what people think of as yoga, is a daily routine, and while it doesn't always give me what I want, it gives me what I need.

I've gone through so many small, intense changes in a short amount of time that on the outside it almost looks like nothing. It is massive, really. I take pride in all my neurodivergent disability even as misguided and misinformed but well-meaning people throw so-called curing treaments at me like candy. It's all right. I know who I am. I know what I need. I know what I want.

I'm still the unicorn, the dragon, the phoenix, the tortoise. I will remain magical, intense, everlasting, steadfast.

I will always struggle will low self-esteem, poor confidence, extreme fear, wild anxiety, major depression, social phobia, shyness, extreme introversion, inability to express my best thoughts properly. It does define me, no matter what anyone says.

Like the Four Magical Creatures, I will rise and heal every time I am struck down. I have long abandoned The Spoon Theory in favor of The Spear Theory, invented during a discussion with a friend. I will never run out of spear stockpiles, just as I will never run out of pain monsters to fight.

I refuse to say that I just need Positive Thinking to help myself heal. My own kind of negative thinking is not harmful. It's like the other side of a photograph. It shows flaws and spots I need to work with. Even the immortal Fae, the eternal gods, the most powerful of mythologies, and the ancient cosmic forces are deeply flawed and must face negativity with positivity as a yin yang balance.

***
Not even hyperbole, but ever since I was a child, psychically sensitive people have dubbed me "Little Fae" and "Shiny Child" and "Natural Quantum Healer" (it took me a couple of decades to figure out that one). Even now in my third decade, I'm not certain what it means, but I enjoy figuring it out.

I mention that most self photos I take tend to give me a fascinating Fae-like glow, an inner radiance extending outward. A friend replied: "Your body keeps trying to kick-start its regeneration, like the Timey-Wimey Time Lady you are!"
Yay, geeks!

In various incarnations, she is Ruby Moon Fae, Snow White Rose, Snow Ruby White, The Rose Lotus Elf Warrior, The Bright Lotus Faery, The Lotus Moonlight Witch, The Bright Rose Lotus Faery.

What happens when a witch becomes zen.
Fire, water, air, earth, spirit, energy, love. Light and dark, gentle and rough, soft and hard, strong and weak.
Power is everywhere.
The world of the Fae is a world in which I tread lightly. There are sentient entities older than time, and awareness is everything.

Dragon hearts are as dragon hearts do.
There is a phoenix in there. I have a phoenix in my soul. I always have. The phoenix and the dragon get along beautifully. They are both me, after all. I rise up after every battle and I keep going because that is how it is.

Ruby Snow Red White, the cloned daughter of ancient Snow White and ancient Red Riding Hood, including the huntsmen and the wolves.
A dragon princess warrior librarian empathic clairvoyant with many masks, a preference for shiny gems, the power to speak to feral books and to speak the language of every Story, and a transdimensional travel enthusiast. Born outside of time, on the edges of snowfall and sunshine, between the seasonal chimes of winter and spring, gifted and cursed with several disabling injuries to mind and body that serve as power sources. A fierce amalgam cousin to both the unicorn and the white tiger, a peaceful dragon child who breathes Story Fire, who gained wisdom from the eternal tortoise and the secrets of life from the everlasting phoenix. She prefers solitude and stories repeated, and because she pulls her permanent wounds around her as shields, must be approached with soft, sweet, gentle love. Prepare to be enlightened, filled with the fires of Knowledge and Story and Fact and Fiction. Avoid deliberately provoking the dragon warrior phoenix princess librarian with certain offensives. Her claws are always polished and she is proficient with spears and daggers. She may need eyeglasses to see, but she sees worlds beyond worlds in many ways.

I am a dreamer, a starry-eyed storyteller, a mage barely in touch with reality, a keeper of ancient living books and powerful secrets, a born writer, a born library keeper destined to protect the magical sections and help customers understand the most intense occult tomes.

My lips are blood, rose, and berry red, my skin is ivory. cream, and silk, my hair is mocha, bronze, and chestnut earth.

I change and evolve quietly, subtly, in ways very few people see. The flaws and scars I see in myself must be concealed to appease my mental disorders, but I can work with them. My swords and spears are tipped with diamond and contain copper and amber and tourmaline, because I imagine them that way. I never believed I was a warrior, until my loved ones needed me to be one.

I believe in gemstones. I believe in lepidolite, charoite, fluorite, kyanite, labradorite, tourmaline, amber, sodalite, seraphinite, amazonite, clear quartz, diamond, copper.

I have been called a Mediterranean Eastern European Dragon Princess Fae Soldier. I have been called A Bright One, a Beacon, a Soul Healer, someone who creates universes in my mind, someone who can ease stress simply by physical proximity. I still do not know exactly who I am. But I am proud to be all those things.

Makeup:
The All Natural Face Cream Foundation in Porcelain Kissed By Honey; Urban Decay Naked Skin Foundation in Shade 2.0.
It Cosmetics Vitality Butter Lip Gloss in Ruby Slippers; It Cosmetics Vitality Flush Lipstick in Pretty Woman; Urban Decay Revolution Lipstick in F-Bomb.
Urban Decay Eyeshadow in YDK; Maui Wowie
It Cosmetics Hello Lashes Mascara, also applied as smudged eyeliner.
****

Mar. 29th, 2015

Persephone, Asha, Hecate

Intersectionality and invisible cripple culture

In my cerebral palsy support group on Facebook, someone asked if we have ever faced intersectional discrimination from other disabled people.
This was my response.

Yes. "You don't look disabled enough. Are you sure you even have cerebral palsy?"

After I explain that I have two dozen visible and invisible disabilities covering every system, the other disabled people grow silent and still and appear embarrassed. Then one of them says the inevitable "But you just don't look so disabled! How do you deal with it all? I would be curled up in bed sobbing." My response is always Zen Vulcan. It's just how it is. I was born like this so it is everything I know and relate to. I view my disabilities as part of my defined identity. And then there's the argument about how you are not your disabilities blah blah.
I live my life as an autistic pagan pantheistic polytheistic pansexual non-practicing Jewish woman with heritages via Sicily, Greece, Russia, Mongolia, Romania, Moldovia, with multiple disabilities both visible and invisible that allow me to walk freely with and without a cane depending on my bodybrain balance and pain and fatigue levels. I am a writer of suburban paranormal futuristic fantasy stories featuring disabled characters. These are what define most of me. My defined identity tends to rotate so I dont pin anything down.
But to have other disabled folk deliberately deny or ignore or make accusations is a punch to the gut. I spent my childhood passing for able by not showing my palsy because the therapist said it would hurt me. Now as an adult, I don't care and will palsy night and day because it feels comfortable. And I have noticed that the more visual I am, the more polite people are in their disability assumptions.

Mar. 19th, 2015

Persephone, Asha, Hecate

I just want new socks.

I feel too disconnected. Too much dissociation. Definitely not enough emotion. This bizarre illogical crying phenomenon... I dislike it intensely. It should not be happening. I must have control over my physiological functions during reactions to situations that would see crying, a symptom of emotion, as inappropriate and highly irrational. One cannot manage a dialogue, never mind a rational conversation, while attempting to conceal the physical manifestations of crying, including tears and mucus and a cracking voice. Illogical, as it doesn't propel the dialogue successfully and only leads to frustration and to pauses in the conversation.

My only explanation is my severe postictal post seizure state and momentary transient global amnesia. My amygdala may be overwhelmingly over processed. I have been meditating and lightly exercising all day. Since the sun has been shining and the temperature has been cool but comfortable, I have taken brisk walks that have appeared to release a bit of tension from both my body and my mind. I have done my best to move through the thick brain fog triggered by this current fibromyalgia flare.

Currently I have no desire to speak to anyone except family via telephone or physically at length, unless it is urgent, at which point I will switch over to Cheerful Me. Most of my communication comes in the form of internet writing and occasional video chat, which especially allows me to break when needed, which my chat companions understand completely.

As I have grown older, I finally learned to embrace the subtle traits of obvious autism, to finally stop pretending since childhood that I was so dutiful and easy going and always ready for a wide smile. I did it all to protect my sensory experience. I looked directly at people because I was mimicking, because I knew it was what they wanted. I didn't like it but I had no idea why; I only knew that intense melting shutdown sensory overload could not be shown lest I be frowned upon. I didn't want the grown-ups to dislike me. I had to act normal! I had to act people!

I was thirty-three years old before I got it. Looking back on my childhood and what I can even remember, I see that inner frustration. Something was not right. I was acting. I was several Joannas because the autistic Joanna was afraid to be. Realizing that was so liberating and freeing and relieving that I became her, and left the childhood me behind. I changed. It was like a very colorful alternating butterfly. I let myself be the me I hid even from myself. And I adore myself as this experience.

And even now, I am told that by having these discoveries I have both deliberately and unwittingly medicalized my life. That I am only about my disabilities, particularly autism, without focus on other parts of my life. Which is so very unbelievably untrue, false, slightly insulting. However, it can be easy to see such points of view when reading my blog entries. I tend to explore new things intensely for years at a time. Sometimes it really can take four or five years before I switch around. I know it seems farfetched and ridiculous and filled with excuses to be excuses. To become excuses.

They call it Autistic Burnout, living a life trying to play the social norm while pushing down autistic traits and denying and ignoring autistic impulses. When your entire brain is begging to act one way and the world needs you to be a different way, it leads to burning out. I have nearly given up trying to explain what it is like to spend over thirty years not knowing how or why the psychological exhaustion happens just from being and doing whatever people ask. As a child I was told I couldn't just read the books in a person's home, that I had to talk, that I couldn't lie down and sleep on their couch because I needed to socialize. I should make friends outside my mind. I should talk about what I felt inside with words. The idea of making friends my own age caused cold sweats. I bonded with adults because most of them didn't care about my oddities. With some I even let the hidden me slip out just a bit. They had no idea it was autism. They chalked it up to brain damage and cerebral palsy. I recall someone once making awful remarks about autistics and institutions. In the late 1980s and early 1990s, especially in tiny towns, autism was a dark fear, literally a silent thief. I didn't know the word. I didn't know it was me. I was just Weird.

Now that I understand why, I am getting pushback and resistance and denial. I never acted like this before. My response is because I never knew what it meant and thus made myself play the part of the normal-ish girl. I completely hid all the autism because I was already a Changeling. Now, with friends, with solidarity, with empathy from dozens of neurodivergent folk in multiple groups, I feel belonged. I can let out the autism to play, to talk and ramble, to simply BE. Existence.

The sad part is that many neurotypical people still want to push it all away separate from us, because when they meet late adult-diagnosed autistics, there is an incredible hard disbelief that we are not just inventing these "new" selves just because of autistics on the Internet, because of trends and conditioning and being convinced and following leaders and being susceptible. "Are you so sure," they say with odd authority, "that you're not just making it worse by thinking about it? You didn't even talk about it until you were diagnosed and you met all these people online. Are you sure your so called friends aren't leading you on?" Which, truly, could be said of any medical condition unless it is extremely obvious.
They sometimes call it Med School Student Syndrome. I call it Finally Coming Home After Years Of Hiding.
I do indeed have OCD and ADHD Primarily Inattentive. That is absolutely not a reason why I have made autism a thing for me. The reasons are many, some private and emotional, and include thirty years of pretend play-acting. And to actually realize those implications at the age of thirty-five is like a stolen breath during a fall, and realizing there are wings never used until that moment.
Being doubted just because I belong to communities of similar folk feels very bizarre and filled with heavy derealization, which has become my default fallback protective method when challenged. It is why I rarely discuss autism outside specific social media forums. Autism really is a strange alien thing to neurotypical people. No wonder it isn't understood well. It's too huge from the outside. But it's so cozy and comfy from the inside.

I almost had a point. I think it was socks. I still want New Socks. They are the most comfortable feeling. Like kittens surrounding my feet. It's okay. The drawer full of old socks can waot a whole month. I am learning to control most symptoms of my OCD this way. Just wait. Just. Wait. They will be there in stores next month. And even if they are not, even if they vanish, different socks with the sorame kitteny sensation will be around and they will be just as wonderful.
Just wait. New socks will come later. Just wait.
That is my point. If I can wait this long to find the rest of me, I have plenty of time to wait for small things.

Mar. 18th, 2015

Persephone, Asha, Hecate

...sometimes I just don't want to be human

Of course, on of my favorite shows is "Steven Universe" on Cartoon Network, which offers some fascinating and mind-blowing insights into what it means to human, fae/alien, and genderfluid



Rose Quartz is shown at 1:40. And I have decided that if I ever meet a woman or female-presenting femme non-binary person who looks like Rose Quartz, I will want to ask them to be my sort-of poly partner, because AAAANGHUF I want to hug that body forreverr. Also? Garnet. Garnet. GARNET.
My hair is two inches shorter just to get rid of the damaged ends. I hate it. There is REASONS I need my hair longer than my nipple when the hair is in its natural wavy state. However, looking at Rose's unbelievable curls and coils and springs... like, WOW.

http://steven-universe.wikia.com/wiki/Rose_Quartz
Persephone, Asha, Hecate

Socks. they are the greatest.

You guuuys, I judt got a postictal anxiety attack over not having enough socks in my sock drawer. Amygdala is the weird.

Oh, right. I need to record my seizutr from yesterday, duh.

Content note: bizarre.

Oh, brainbody, do not do the things. I'm not prepared.

No epileptic is prepared enough I guess.

I will do my best to recall the magic bits in the Faerie Tunnels so I can write when I come back.

People will still be here. Fellow Aut-Fae will probably want to know.

I feel cold-sweaty, vertigo, spasticity, tinnitus, skin tingling, the smell of bourbon vanilla, rich chocolate, patchouli, sandalwood, vetiver, labdanum, amber, neroli, rose, Dragon's Blood resin... a smell of Magic, my pull, my call.

Oh. Alicia is here in the front of my head. I can't stop it but Alicia will lead me across the screaming neuron fires.
I have to go. I'll be back. It won't be long but I will need to wait until I can articulate expressions after the slurring.
*
I came out of the seizure screaming in a keening wail that made all three cats rush into the room. I have no idea why. I've been panicked and worried for almost two hours. Over nothing. Or Nothing. Like in The Neverending Story. Ananta is doing everything she can to shield my neurology. Alicia is weakened and Serena is healing her. I don't know what's happening. I don't know why I am crying. I'm not sad. I don't know what this emotion is, if it even is emotion. My human shaped fictional coping mechanisms are scattered and uncertain and not even Amber can keep order. Asha wants to take over next to me, that's how bad it is. None of my mental guardians offer to come all the way forward unless it is really awful. But Asha is very different anyway.

Epilepsy plus fibromyalgia plus cerebral palsy plus sensory processing disorder plus severe anxiety plus C-PTSD plus anorexia and body dysmorphia is as a mix really really strange. Especially when fae autism traits are involved. I can't look in the mirror because my eyes will appear too destructive, like a storm of maliciously twisted darker magic trapped in a nightmare. I need to grow my light. I'm so so tired.

I will be fine. I will happen more. I will be so okay that the less okay will turn into more okay sooner than later. I am getting better at dissociating just enough to make my self be as most okay as can be for the moment. I will shut down and cry without sadness and that might help.

I love you, neurodivergent fae friends, for getting it. Please help me if you can. Talk to me with stories. Leave me trinkets.
*
I think tomorrow will be okay. I mean more okay. I will be postictal for a while, but I'm used to doing life things while woozy and full of after seizure upset. I think I understand why friends say I am strong.
*
Moringa powder in water: check. Backup seizure and anxiety drugs and vitamins: check. Face washed and moisturized: check. Alarm set with Sweet Lullaby by Deep Forest: check. Isochronic noises via Relax Sounds app to help sleep: check.
Cats randomly patrolling the hallways and under the bed: Check.
Go sleepy go night night go zzzz... (as husband and I chant in sing song voices often)

It's more okay.
*
Fuck you, epilepsy and anxiety disorder and sensory processing disorder via autistic comorbids. Everything I happen makes me want to scream, crouch in defense, sob like a lost leopard kitten barely old enough.

Filling out the pre-appointment for for the tubal consulting. Calling various doctors and institutions to cancel and set up more appointments. Trying to ignore angry scary messages telling me I've changed and now am too assertive and snappish. Trying to not scream when someone flings platitudes at me like 'Don't Let The Haters Get You Down and Just Ignore Them Because You Are Beautiful...' because I want to hurl platitudes into the sun.

I almost enjoy being so emotionally half dead during post seizure days. I feel nothing when some misogynistic Trilby collector wants to rape me because of his cerebral palsy fetish. BLOCK. I also wish to drop cinderBlocks on them.

I cannot think in words well. Serena and Ananta are helping my neurology and my anxiety. Asha is directing my communication. She really is less of a guard ians and more of a different psychic aspect of the self.
*
Temporal Lobe Epilepsy that manifests as traveling through mirrors and warrens into mathematically nonsensical worlds in which I help reign and be their version of Tuatha. It is a severe medical condition that rips open my imagination and forces me to bleed my own fantastic life so it can live.
I
I am tired, fatigued, exhausted, full of hungry mist and fog. I am lying down. I am craving sweet fatty foods, coffee with chocolate, crunchy raw vegetables and fruit. Luckily all those food are in the kitchen.

(No makeup at all, save for clear lipgloss. A smidge of color brightening and exposure adjustment. The current skin care regime has me almost convinced I can show my face without a simple layer of concealer or foundation. It doesn't really matter, since all my makeup is skin care. Feels awesome! IT Cosmetics is fairly life changing as far as blending color.)

Mar. 13th, 2015

Persephone, Asha, Hecate

Celebrating Bodies

Photos of nude women being people.
http://www.themilitantbaker.com/2014/08/expose-shedding-light-on-collective.html
In fact, I could see many of these being models for my mother's art classes.

Mar. 5th, 2015

Persephone, Asha, Hecate

Eyes!

Adam and I went to the local America's Best Eyewear places so Adam could get new not-scratched glasses. And while he was getting his eye exam, I asked about one for myself. See, that place always has a "sale" that does two frames, any frames, for $70 that comes with  free eye exam. Of course, the lenses are not included, and depending on your prescription and if you want Transitions, it can run up to $250. And if you only do the eye exam, it's $70. So while chatting with the receptionists, I filled out a form and scheduled an appointment for the 13th, right after I get my disability payment. I could probably put this into my medical expenses for next year.
When I consider the overall deal compared to getting glasses from Zenni Optical website, it basically comes out the same. One pair of online glasses, frame plus prescription lens plus tints, costs me almost $60.

I could just get the $70 eye exam during my appointment and then go online for two pairs of glasses for around less than $120. Going to the store and getting the exam, two frames, and lenses, would cost somewhere around $270 due to my insanely high prescription,. I've already seen two frames I adore, though.

I've got some time to think.

Mar. 1st, 2015

Persephone, Asha, Hecate

Disability Day of Mourning

So, today is Day Of Mourning for disabled people murdered by caregivers and parents. And I found this, and oh gods.
http://autism-memorial.livejournal.com/
That is too many like me dead.

Feb. 27th, 2015

Persephone, Asha, Hecate

Farewell Mr Spock

Leonard Nimoy is dead. I am crying. His final tweet broke my heart. My meditative secret place is a magic garden.
1425075579668

An article explains how the fervor and insanity over the "ugly Tumblr dress" can compare to sensory processing difficulty in autism. And every autistic goes "NO SHIT."

And a very powerful article about the dangers of Autism Speaks makes me cry again.
http://theautismwars.blogspot.com/2015/02/kudzu-autimspeaks10-autism-wars.html?m=1

Feb. 23rd, 2015

Persephone, Asha, Hecate

Why people are fascinating

http://www.buzzfeed.com/virginiahughes/autistic-people-spark-twitter-fight-against-autism-speaks
LOL, when trolling works well for a good cause, it is fabulous.
So, recently, someone I've known online for years pissed me off- and I held my tongue for personal reasons- by writing something along the lines of "I don't think you're autistic. You didn't used to act like it and you still don't. Weren't you just always high functioning and now less so?" And I found a really good quote that could've been a cool comeback. Thanks, Buzzfeed comment section!

"Functioning labels are a social construct, they are also offensive - and by offensive we mean oppressive and prejudice - we're all Autistic, it's a spectrum condition so it effects us differently and to different severity which can change throughout our lives. You're making assumptions about someones functioning based on personal judgement, and dismissing the voice of Autistic people based on your prejudice."

What matters is how it actually truly does change over time. It was suspected within me when I was a child in the 1980s, but I spoke fluently and powerfully and I was a very sociable huggy feely girl, thus barely fitting the stereotype of that time, ditto in the 1990s and the 2000s. As an adult, my brain kept changing and altering, and my autistic tendencies were spotted prominently by people who knew, who understood, autistic people and doctors trained well. I was able to stop calling myself abnormally weird. I was able to realize that having a name for a thing - and a community, full of new friends - was one of the best medically important moments since I was able to give a name to epilepsy and then fibromyalgia, names of things that got powerful and honest attention.

Over the years as autism and autistics became more studied, details changed. Which is what I think bothered people like the person who wrote me. "How can it still be autism they keep changing it over the years?" people ask. "If it changes, what's the point of a spectrum?" they ask. I dunno. I might ask that of anything in life, really. Everything tends to flow in severity and function over time, whether it is few years or a few days. I didn't just pop up autistic, regardless of what anti-vaxxers insist. Autistic folk everywhere who never realized they were #ActuallyAutistic are just figuring themselves out, and I think my online friend and many others have been genuinely startled by the idea that even the details of diagnosis and spectrum itself are changing. What do my Actually Autistic friends say?

Feb. 18th, 2015

Persephone, Asha, Hecate

Mozzarella : it's what's for everything

I have been snacking on whole fresh mozzarella cheese, salami slices, and roasted almonds, along with apple slice smeared with cashew butter. Good stuff. When Adam comes home from work, we'll eat the eggplant parmigiano that has been soaking for two days.

In the medical science community, there is a slow push to make chronic fatigue syndrome an actual disease as well as fibromyalgia. This may at least help them take us more seriously.
All I know is that Cymbalta is doing lovely things, surprisingly. After adding Rhodiola Rosea and Garcinia Cambogia, which gently boost dopamine and serotonin, I feel better. Still in a depression episode, still having anxiety blackouts and transient global amnesiac episodes. Buuut it's better. It doesn't seem any bettet since it all began in 2011. But I can feel things happening. It's all qualia anyway. All subjective.  I can never tell anyone to be me anyway.

Feb. 12th, 2015

Persephone, Asha, Hecate

I have so many names. We all do.

Quotes to repost to blog:

From an article an its comments on the importance and power of labels:
"Also, in addition to being a really fecking stupid idea, trying to discourage the use of labels is an utterly futile one. Referring to definable concepts using words is human nature. Centuries of biological and cultural evolution has created a species that NAMES things. It is among our most fundamental psychological drives. We are the species of science and of literature; of identification and expression. We are Pan narrans, the Storytelling Chimpanzee. Verbal communication is OURS, as a field, like hardiness belongs to the cockroaches and swimming belongs to the fish. Our species is too intimately tied to the concept to back out now. When one encounters a concept that has no name, it is hard-to-impossible for a human being to avoid naming it, if only in the privacy of their own head. Labels are not only part of how we communicate, they are part of how we think. I see a chair, my brain says “chair”. I see that someone is upset, my brain says “upset”. It is difficult to efficiently think about something that does not have a name, and even more difficult to do so without resorting to making one up. Have you ever actually sat down and tried to find and list lexical gaps in your own language? It is nigh-impossible to do so without noticing two things: firstly, that there is very little that we don’t yet have a word for, and secondly, that our instinctive reaction upon identifying such a lacuna is to think “This thing totally SHOULD have a name.” So it has been since not long after we first developed what would later be labelled “sapience”. To oppose the use of verbal labels is to declare oneself to be a glitch in human development; an evolutionary throwback to those wordless days when Homo sapiens wasn’t yet capable of living up to its own name.
Basically, if you actually used words, made out of letters, to type a statement of opposition towards the concept of labels, then your argument is invalid and you have already lost."

"I care because of all the time I spent lost in the wilderness, thinking something was missing. I care because of all the time I spent looking at other people and seeing that I was fundamentally different than them, thinking something must be broken inside me. I care because of all the time I spent not knowing where I fit in the world, thinking that I must not fit anywhere.
I care because I don’t want anyone else to go through what I went through.
I have a place now. I have a name for me.
I’m not broken anymore.
I can’t make you understand what it’s like to go through that, but I can tell you that it brings tears to my eyes when I think about how many questioning people in the asexual tag I’ve helped to realize that yes, actually, they are asexual, and no, that’s not a bad thing, and yes, that’s a real orientation and yes, it’s okay to describe yourself that way. People are confused and hurting, and they need to hear that their experiences are legitimate. If a simple label can help, then so be it."

"If you have a problem with people affixing words to themselves as a means of reassurance and consolation, then you can shove it. Your opinion is irrelevant. Every other set of people who uses some label — don’t need to justify their choices to you. They owe you no explanation. And yet the internet is littered with explanations if you know how to find them, because people like you are so numerous that they’re compelled to write everything from snippets to essays to articulate what you failed to figure out on your own."

"Why is it even necessary for them to explain to you, hm? Why do you need to hear it in the first place? Why do you want to stop us from making ourselves feel a little better after being ground under the heel of normativity? Here’s an idea: instead of asking why they think it’s “necessary” to label themselves, ask yourself why you object to it. And for Pete’s sake, don’t give me that “limiting yourself” crap."

"Ah, man, so many people have so many issues with labels and it doesn’t make sense that they do. Most of the time, I feel that people have angst with labels because they don’t want to admit that the shoe fits, like people who dislike the word “bisexual” but prefer to be “heteroflexible” which is just another label to describe being bisexual but with some sort of difference (which is really no difference)."

"I ‘preach’ to people that without labels, we would be unable to identify the world around us – and it’s necessary and vital to our existence that we do this – we can’t function without labels and, as such, all we need to do is know what they are, how they’re applied, stuff like that, and just get on with our lives. But, we also know that words have power and that some words can be used as weapons and to attack each other at the most personal of levels… and all because of the ages-old mentality of “if you’re not with us, you’re against us” and that habit we have of wanting to destroy that which is not like us."

"Labels don’t upset me because they can only have that kind of power if I allow it – I choose not to allow it and I can’t really understand why other people choose to give them this kind of negative power."

Feb. 8th, 2015

Persephone, Asha, Hecate

Humans!

And yet and yet, people still say things like
"How can you be in a depression episode again? Isn't your medication and therapy supposed to be working?"
"So, what caused it? Did you get upset at a news story?"
"Are you sure it's depression? Maybe you're just sad."
"What did you do this time to cause it?"
"I thought that new medicine was supposed to make it all go away."
"You know, lots of people get depressed. I hear exercise and sunlight work best."
"Hey, you're laughing! I guess you feel fine now. You should laugh more to cure yourself."
And yet and yet, I still want to smack those people when they continue to just not get it.

Jan. 30th, 2015

Persephone, Asha, Hecate

Medical vs Social Disability models

Copied from a comment I left on Facebook. During a discussion regarding how cerebral palsy might or might not be seen socially as an active disability that impacts a person's social or professional life
***

I am medically disabled.
I'll be medically disabled and socially disabled even when society makes everything accessible and easier to navigate.
My disabilities are part of me forever because of my brain being abnormal and different from the average. I'm cool with that.
I don't want to fight or struggle or handwave against it. Disability is a part of Joanna Me, just like shortness and writerbrain and cat loving an writing paranormal urban fantasy with future elements.
It is one definition of Joanna Me but it is not the biggest. It gives me powerful insight into my world and the world around me. It's like a friend woven into my neurology. However, there are much stronger definitions to show.
Being disabled and having a disability are often unconnected depending on how the person feels. Hence the disconnect between medical model and social model. Cerebral palsy is medical, but social depends on how society is able to make room.
If someone wants to see my disabilities first, that's cool, as long as they see the rest of me too.
I identify as disabled. One of my disabilities is cerebral palsy. It is a result of congenital  brain damage. I will always be brain damaged. I will always be disabled. That is fine by me. I embrace being disabled while having a disability.
The End.

Jan. 29th, 2015

Persephone, Asha, Hecate

We're all different, and that's awesome

A fantastic quote on feminism that I want to remember:

" Equalist as the replacement word sounds like an active, willing erasure of the specific problems faced by each of the marginalized groups in society. Each will have their own pitfalls and villains in the public eye, yet the approaches to solving the problems are unique to themselves. Erasing the various identities and struggles to homogenize them to allay the delicate sensibilities of people who don't want to be associate with the word "feminism" which had somehow become a bad thing in society, will not help matters at all. It's actually hurting our causes more to erase the specific problems and people from our awareness. And people can also be for equality when it comes to race or disability, but will have startling misogynistic views. Equalist only serves to placate the misogyny by implying that identifying with women's struggles is somehow beneath people."

Jan. 20th, 2015

Persephone, Asha, Hecate

Deeep breath

Good news: I have personal anecdotal evidence that at least six grams of Inositol powder per day have seriously curbed symptoms of multiple anxiety disorders, OCD, and ADHD-Inattentive Type. It will take a few months to really see major effects, but combined with the new Cymbalta, the therapeutic inositol is a good thing for me. For ME. Mom sent me the inositol powder she had because she said it was too sweet. It's been replacing sugar in my coffee for a few weeks now. Besides, you need more inositol if you drink coffee.
http://www.integrativepsychmd.com/articles1/inositol

I'm almost recovered from this respiratory virus thing. Using Mucinex D has helped, although I'll be happy to no longer need it. I miss free deep independent breathing. Not even these qigong exercises work enough. But that is what modern medicine is for. And holistic medicine for balancing support. *drinks more Fenugreek honey tea with mangosteen powder*

The fibromyalgia flare that has plagued me for a full month is still in full strength, but I feel like I am too used to it. I wonder if that's a bad thing.

I see my general physician tomorrow anyway: We were planning on discussing my new positive relationship with Cymbalta and its amelioration of my worst episodes of OCD, ADHD, panic disorder, and nightmares. But mentioning something to kill a virus is a good idea as well. And the next day is my monthly pain specialist appointment. I plan on talking about the canned oxygen treatments I've been taking.

Jan. 14th, 2015

Persephone, Asha, Hecate

I'm so tired of being sick lala la

Hello, walking pneumonia,  it's been a long time.
Grump. Adam has shaken it off like a wet dog thanks to his supreme immune system. Me? BAHAHAHA NO. Grump. The virus teamed up with the fibromyalgia, spasticity, ataxia, epilepsy, and autistic comorbids. Adam couldn't get how I was too weak to lift a slice of beloved New York pizza to mouth unless I drank whole milk just for calories. It was hunger, viral illness, disabilities, chronic illnesses, altogether now. I'm eating slowly as much as possible now. My go to safe food during hunger fatigues is always dairy, since it saved my life in college, and it's been long debunked that dairy products make the body produce  more mucus. Second safety food is nut butter like cashew and almond, or peanut butter. Yesterday's sandwich of  smooth cashew butter with lingonberry preserves on multi grain bread was divine.

I'm super cold. My temperature is so low, I'm a brown dwarf. Husband's joke, he's the astronomy nerd. While I agree that I may not have enough mass to trigger internal combustion yet, the neuro-psychiatric chemicals and neurons running around the inferior parietal lobe are making jokes about how "less mass is the whole point lolz" and excuse me, I need kick my brain in the insula now.

Current encouraging meal: yellow rice mixed with crema, mushroom, and crumbled bacon. Really really encouraging flavor.

(Seriously, my basal temperature hovers around 98.3 normaly. Right now it's at 97.2... Husband is always amused that I rarely create my chi flow after meals. He's a furnace, instantly beginning metabolic burn so intense that he projects heat. Me? My core is cold. My chi might as well be ice. Since I do work a little with chakras and basic reiki, I know how often my solar plexus chakra is partially blocked. Weird thing is that the few times I did healing touch on friends, they mentioned that i projected cooling energy, like a burn being soothed or a soft autumn breeze.

I will see if I can start my metabolism furnace more quickly. Also, velvet cardigan!

Jan. 13th, 2015

Persephone, Asha, Hecate

Oh, hey, 2015

I forgot to come back here after the new year. Sorry, journal. I was busy.

Today, and yesterday, and the day before, I've been... I guess it's ill with a cold, or a cold and allergies? It seems to vary. Obviously, a fibromyalgia flare has been set off. I've been dizzy, shaky, sore, with a scratchy throat, itchy eyes, runny or stuffy nose, yada yada. If it keeps going past a few days, I'll call allergies.

At the end of December, Adam and I began talking honestly about my Neuroweird, and he figured I might do well on an ADHD drug or similar, which made me consider SNRIs, which made me recall my first attempt at Cymbalta in 2002 that went wrong, which made me decide, after talks with three doctors and my insurance, to go back on Cymbalta in place of Zoloft, to see if an SNRI would do better at poking away at my Neuroweird. In combination with the personal therapy regime that will be slowly happening for probably ever, it is working. Most of my compulsive episodes have been very controlled. It is hard work, obviously. Everything is hard work. Sometimes we who have multiple intense chronic illnesses forget to mention how hard it is to just... be. Every day, all the time. Or people who don't understand might forget how hard it is. Not having episodes of... All The Issues, it's hard.
Cough.
Anyway.
Maybe I just forget, because it's all happening to me all at once, constantly, in the background, and I'm so used to it that I wave it off and go "Meh, it's just Things, it's always been Things, whatever" even though my entire brain is screaming and full of storms. I don't listen to myself enough; I'm too used to me. That's part of an upcoming therapy session, too.

Very current parts of therapy have been literally watching comedy videos while exercising. The Nostalgia Critic videos on YouTube, for example, and Futurama on Netflix, and Cartoon Network during the day (Woo, Amazing World of Gumball, woo, and also the creator of Uncle Grandpa was in my high school class, heeyy).

I've been sleeping with plush animals again since childhood. It's fabulous. Ty makes lovely plush My Little Pony dolls.

Dec. 29th, 2014

Persephone, Asha, Hecate

Well, granted...

http://www.speculativeliterature.org/Grants/SLFDiversityGrant.php
I had no idea this was a thing until my mom's novelist friend mentioned it. I'm going to apply and then look at other grants.

BTW, FYI, JSYK, etc: I'm happy. Nothing to do with cults of positive energy or what have you; although positive thinking plays a small part in a specific way, as well as negative thinking, which folds up into balanced thinking energy whatsit. Everyone is always saying "Find your happy." And I have. I'm still going to have low, bad, poor, ugly times, because that is life. People are going to criticise me for things and such, because that is life. Right now, the only thing that matters is how I feel. Good, bad, positive, negative. But I'm just happy. That's what matters. *slowly nibbles on a glazed honey bun*

First novel really is close to finished. I am struggling to figure out what's the better way to blow up everything before reforming. Exploding reality is haaard.
Second novel is flitting around my writerbrain. I think this is going to be all nonsequential. I'll assign chapters later.

LOL, my kitty. Callisto has taken over my leather task chair on which I use a Pillow Pet as a cushion. If I'm sitting, she jumps into my lap, walks behind me, curls around me, and suckles on my shirt while kneading.

Dec. 25th, 2014

Persephone, Asha, Hecate

To brain the best brain I can brain

Good things.
The personal therapy protocol is juuust starting to work. Slowly and softly. The doctors said slipping off is natural. But my slips are fewer. I think the new drug is working much faster than expected. No terrible side effects after all between dry mouth and that tingly sensation that the world is shiny shiny shiny. But I can already feel those most compulsive thoughts starting to be quiet.

Now, if I could just not be badgered by acquaintances who want me to be better now now now. Yes, this has had me in its psychiatric grip for over four years. It takes tiiime to get the ideal treatment. Yaaaaugh, leave me alone. You don't know. You are not inside my neurology.
Repeat. Rinse.
Those of you who get it, you get it.

So much meditation. It is in my dreams. I am ready to work myself through and beyond. Shut up about it taking all these years. Damaged braining is hard.

I make it hard for people to love me well enough to help. Which is why I need to do this on my own.

/venting ranty ramble

Dec. 24th, 2014

Persephone, Asha, Hecate

Hmmm. Deep breaths?

My general physician refuses to referr me for hyperbaric oxygen for what I agree is totally valid reasons, unless my neurologist and pain specialist both think it's okay. I just finished a scholarly article saying that there were no conclusive findings or great evidence that it did anything for brain damage. But we'll see what the other doctors think.


Oxygen Therapy or Hot Air? Bioethicists Say Treatment Doesn't Pass the Test - NBC News.com http://www.nbcnews.com/health/health-news/oxygen-therapy-or-hot-air-bioethicists-say-treatment-doesnt-pass-n262791

Dec. 23rd, 2014

Persephone, Asha, Hecate

Rebooting The Joanna via quantum psychic consciousness mixed with modern medicine

So, my thoughts have been spinning merrily amidst what could be a spiraling episode of... Oh, fuck, probably everything at once. After I had a chat with three doctors about the consequences of stress-related memory loss, I quietly decided to start a private mindfulness therapy, which I have only been sharing with the psychologist, for advice, while I move forward in my own brain to stop my own brain from destroying my mindstate.

Tomorrow, I see my general physician and have her write a referral for the local hyperbaric oxygen therapy center. Although it's a bit premature, as they have yet to call me back about an initial consultation. While I was filling out their online New Patient form, I started wondering if they would even take someone like me, with two dozen illness. Even though cerebral palsy is the cornerstone. I just feel so excited about it. That's a good thing. I can still most of my emotion things.

What I find beautiful and fascinating about my private therapy protocol is that almost nobody believes me. I have been stuck in something insane since 2010. Why would they believe I would "get better" now, so many years later after therapy and medications and meditative exercises? Then again, none of them have been in long term therapy or medication. It really does take many years to spur a change this massive. Hence the secret protocol, which includes a possible medication update and potential oxygen therapy.

I don't expect anyone to believe me. I don't expect anyone to believe in my desire to change with this therapy protocol. How could they? Why would they? I am the same as I was when symptoms started. But I don't want their belief. I don't really want support if there is no actual active knowledge. How can you say "Hey, I've been there, I get it, fist bump in solidarity" unless you really have gone through a similar structure of treatment repeatedly for a grab bag of illnesses that mindfuck you for no reason?
Actual legitimate question, BTW.
If you're also a parent of someone with interconnected psychiatric and neurological disorders, I would love input, because when I try to explain these things to my mom who only has hereditary ADHD controlled via lifestyle, my emotion-brain starts shutting down so my technical-brain can word at her, and I know she wants less science and more human. I'm trying. I just cannot get past that very protective mental guardian who shields emotion-Joanna from Outside. And oh, as much as I love Serena, she feels it is easier and gentler to let me sleep while she and Koan the calico kitten organize and compartmentalize all the Me. Ananta works hard enough balancing out all the neuroweird that Alicia in my private epileptic Wonderland can't reach. I haven't had much success in psychically merging with Asha. We are working out my dissociative and depersonalization episodes first.

I will do this. It will happen. Steps have been severely taken. Hard to talk. But if you think you get it, I would love a discussion via Private Message. I am willing to reveal bits and pieces of my Rebuild Joanna Brain Project to acquire tips and advice from those who get it.

Now, see, I view many people as family beyond my blood family - my parents who shall remain the best family I would want. Various people in my social circle - friends plus family - have always stood with me. I will always need and want that. But for those who are truly normal and looking at me with confusion, puzzlement, exasperation, fear, anger... and the type of condesencing that means pats on the head, chuckling, and "I love you sweetie. Of course you'll change." "You do nothing. You never help. You are too self absorbed, you don't think, you claim memory loss. It is all right, dear. We are used to hit. Just finish writing." Followed by another hair tousle. I'm used to it. It's routine because I am me.
I am not out to prove them wrong, not entirely. I am out to prove to myself that my neuroplasticity really might eradicate the worst of the annoying symptoms.
Maybe this whole autistic ramble came from my hope and excitement over this slow gentle therapeutic process. If loved ones want me to speed it up, I can turn away for a while to meditate.

All I know is that my own husband has been putting up with me forever, and that says something huge.

Love you, LJ family.

Dec. 19th, 2014

Persephone, Asha, Hecate

Mmm, oxygen...

http://www.bethesdahbot.com/
On Monday, I plan on calling my pain specialist or general physician and asking for a referral to The Bethesda Hyperbaric Oxygen Therapy Center. It is literally next door to where my physiatrist and physical therapist offices are. And now that hyperbaric oxygen therapy has been approved for things like cerebral palsy and muscle pain, I'm hoping that it might help ease up some chronic pain. A while back, Adam had bought a small canister of oxygen, which made some of my muscle pain disappear for a couple of hours.
So, who knows.

Dec. 15th, 2014

Persephone, Asha, Hecate

Just love me. Love my brain, love my self.

http://www.nancyfulda.com/movement-a-short-story-about-autism-in-the-future

It really is a gorgeous and poetic story. At least one member of the support group I'm in has pre-judged it because there is the concept of a "cure" via grafting in the brain, but said treatment is clumsy and doesn't always work. So, hey, I always say read the story before claiming "if it's about cures it's not beautiful." It's not about cures, it's about living in a mind that sees the world in a way that most people never will.

Autism is vastly different than my other disabilities. I'm proud of it. I'm proud of my brain, everything it has accomplished and attempted during its neuroplastic growth. And having a mother who, while thankfully is not a raging martyr mommy, is at least accepting and respectful of the idea that autistics generally don't want any cure, is good good. I am still so grateful that I wasn't diagnosed until adulthood. And that self-diagnosis is just as valid as a piece of paper from doctors; most auttstics who realize they are autistic (I had both and also encouragement from autists who have known themselves for years and years). It's not that "we were diagnosed with autism" - it's that we realized that our autism makes us what we are. I'm different and I love it. I don't want to assimilate with neurotypical brains. Like the girl in the linked story, I want to look at the universe on the atomic level and know how beautiful it is.

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