brightlotusmoon: (Pixie Model 2)
Hello from the LJ user formerly known as BrightRoseFox.
Due to a complex thingy involving problems with emails and such, I have changed my LJ name, my yahoo name, and my gmail 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've been getting messages, emails, phone calls, and comments from friends who have told me what I mean to them. I've been amazed and heartened and lifted and joyous.
I may be a moonlight witch, but I can't access the magic of the moon without accessing the magic of the sun. And the moon is always there, her power full constantly.
I feel bright and powerful and in full bloom, like a great lotus blossom beneath the full moon.
brightlotusmoon: (Asha)
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 - who shall remain the besy 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.

Testing

May. 17th, 2014 10:51 pm
brightlotusmoon: (Asha)
Why is the human mind so complex? Why is the human brain so intricately complicated?
Neurology is a supernatural extremity, an unsolvable puzzle. We cannot comprehend. We stand forever on the edges of brilliant and wild things we will never quite touch. This is humanity. It burns. It is indescribable.
No. We can only wait and watch.


Posted via m.livejournal.com.

brightlotusmoon: (Asha)
'Reborn' by Laura Sava (anotherwanderer.deviantart.com/)
'Mirabella' by Rachel Anderson (www.silverstars.us/‎)

Two forms of my own story character, Asha Clara Night, my strongest, most individual, most personal fiction character.

These paintings. Completely different images that look almost exactly like incarnations of the same character of my own subconscious creation Women who look almost exactly like the dreamself I am becoming in my dreams and visions.

Laura-sava-Reborn

Rachel Anderson Mirabella


She was in my dreams last night and many nights before. I haven't decided exactly who she is yet, but in my dreams her name is Asha, meaning "desire, hope, hopeful; life; alive; she who lives." Which says so much, so so much.

She is another dreamself, not a spirit guardian, but much closer to my Self than my other characters (Alicia, Serena, Ananta: my spirit guardian coping mechanisms for epilepsy, memory loss, insomnia, sleep problems, [Alicia], chronic pain and fatigue, depression, anxiety, physical disabilities [Serena], neurology, neurodivergence, autism, total mind-body connection [Ananta].

Asha seems to represent many internal things about my emotions, my heart and mind, my rhyme and reason, my logic, my science, my creativeness and creativity, my power, my energy, my beauty. If she were to reveal herself as a guardian, she would be for emotional states, creative thoughts, desires, loves, patterns, ideas.
Asha is definitely powerful in a way I always wanted to be since childhood: Fae and and Elemental Mage and Neurodivergent and Autistic Witch and Quantum Magic Scientist and Story Crafter and Shape Shifter and Magic Librarian and Magic Keeper.

Asha seems to represent my deep, obsessive, compulsive wish and desire to be one of the psionic-mage superhumans in my stories, to take over for be when I feel failure and self-loathing and terror and panic. I think Asha may in fact be an actual entity, one who communicates outside instead of simply speaking into my visions, dreams, pain flare withdrawings, anxiety attacks.

All I know is that Asha was in every dream last night and throughout the past several sleeps, long detailed intense dreams, and she quoted Kosh. She spoke in a soprano version of my voice that could sing. She was always here She is always here. She has always been here.
I think she was with me since I was a baby. In different forms, in different species, with different names, in different imaginary beings, in different fictional characters. She was made of fire. She used to be a phoenix, a unicorn, a dragon, a star, a nebula. I know Asha. I know Asha in the way I hope to know myself.

The thing is, Asha has a fully active voice when I am completely conscious, aware, awake, functional, and stable. She didn't completely create herself, but she grew and evolved over my lifetime in her own way as a character in my subconscious. She took ideas I worked with and wove them into her personality, behavior, and mentality. My disabilities are hers. She stayed and changed and grew with me like a permanent piece of my spirit. Asha also represents my fluid sexuality - I often visit her in the place she calls home and we make love, representing my desires for love and orientation.

She lives with Alicia in the Wonderland cottage, but she freely moves about my brain more often. She shapeshifts into elemental energies, she moves around my hippocampus and amygdala and temporal lobes and cingulate gyrus and thalamus and auditory cortex and somatosensory cortex and parital lobe and the back of my brain.
She has altered the Wonderland cottage to be something else entirely, with three bedrooms, two bathrooms, two office rooms, a large entertainment living room, a large kitchen, a basement. The outside build would contain concrete, cement, hemp and limestone, bamboo, steel. The glass windows are shatterproof. The doors are hemp-lime and timber. That must say something about my mind's inner workings. Especially since the main reason for hemp being illegal is due to its threat to corporate patentable synthetic fibers and wood and paper product industries, while the medicinal drug potential became subject to false claims and fear mongering alarm campaigns until the original industrial potential became buried under the alarmist anti drug campaigns. Part of me probably knows how powerful this is. Medicine from nature itself and the human brain itself is usually denied and seen as worthless.

Asha represents that part of me that firmly supports the controversial balance of traditional pharmaceutical medicine and nontraditional botanical medicine.
Asha is my activism and advocacy. Asha is the fire that moves my belief in the combination of synthetic drugs and organic drugs. Asha is the phoenix in me that rises after every defeat, every failure, every attack, every oppression, every attack and assault on my truths and faiths.

Throughout many names, faces, back stories, lives, personalities, and individual growths... she has always been Asha Clara Night. And this is how she asked me to look so I could see that there is beauty deep and shining.

I must find and thank the artists for these images, since I found myself taking these pieces of artwork and subconsciously turning them into incarnations of my own fictional character.

https://www.facebook.com/photo.php?fbid=10151978626835684&l=17dde55bf4

Asha may well be the character in that second novel after all. It won't be this Asha, my Asha; just a version, a more humanized incarnation I can bring out to show the public. This excites me. She could help me write it, just by living in my mind.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Copied from Facebook, because it should be put here.
*
My neurologist is hilarious and awesome. And she thinks the same of me. We're gonna schedule a brain scan. And we traded quips and jokes about why the he'll I didn't get diagnosed autistic until last year. And she agreed that I am badly stressed and depressed for no reason and she desperately wants to help, and she wants to increase the Zoloft a bit to see what happens, and she's very pleased that the passion flower is helping me sleep, and she cares so much it makes me cry. She hugged me when we were done.
I told her that I feel like I'm on another planet with super caring doctors who really help, and she looked so empathetic and almost upset about the lack of such support. I heart you, Chang Ching Debbie Lin, super neurologist and friend to patients.
*
And here I thought they would take more blood. I must remember that the good veins are in my right arm. I'm impressed I was able to watch both arms being poked. That was a big needle.
*
And of course I tripped and fell flat on my knees and shins while walking through the grass. As I was using the cane to slowly get up, I heard a woman call out, and then a hand was on my arm. She asked me if I was okay, and asked if I was going to the bus stop across the street. When I said yes, she held my left arm and helped me the whole way and stayed until we were sure I was okay. Then she went back across. Funny thing was that we were right next to both the hospital and my primary physician office.
I'm home now, and both my legs are bruised, and I'm all stiff and annoyed. But the look of concern on the woman's face made me grateful that people care enough...
*

Indeed, it's never big things, never major or massive emergencies. It is just several little things, one after another or at the same time, building up day after day, never stopping.

Dr Lin Super Neurologist has written "chronic stress disorder" on the list (right next to intractable epilepsy, insomnia, cerebral palsy spastic ataxic, and myalgia as doctor-approved medical issues on that lab test print-out I took to the lab that took two vials of blood). When she had touched my shoulders, she had exclaimed, "Ohh, you're stressed. These muscles are far too tight, even for the cerebral palsy." We joked back and forth - I said, "You know those internet memes that tell you to think positive thoughts to eliminate stress? I hate those." And she said, "It's exactly like saying that the best way to treat a stress-related disease is to get rid of stress. Helpful, isn't it?" - and she was genuinely worried.
She gave me those physical tests where I had to push against her hands with my hands and legs, and my left side barely responded, and I watched her mouth turn down and her eyes fill with sympathy. When I said that my medications were working very well for what they had to work with, she was almost gleefully relieved. She does want me to see a psychiatrist, and she thinks increasing the Zoloft may help mitigate some stress with its ability to handle more than just depression and anxiety. She was happy to see me able to genuinely express my sense of humor, and she liked that I called my depression episodes "hollows". I truly feel better for having seen her and for scheduling the six-month follow-up. Brain scan ahoy.

I know so many people with intense diseases, disorders that must be monitored and treated with porcelain delicateness, with multiple medical conditions that leave doctors stunned and astounded that these patients are still alive. This is why I don't like to compare. This is why I hate playing games, even though sometimes I find myself pain-bragging without realizing. My small, numerous, chronic daily medical issues are nothing next to something as huge as, say, cancer or MS. But they are annoying.

These varied, various, multiple little pains and problems are indeed growing and they are quietly and slowly debilitating no matter how many Happy Thoughts tm I throw at them, and they will be with me for the rest of my life, and I will work with them and treat them as best as I possibly can, and I am doing my best to turn away from insistent voices that cry about magical panacea drugs/herbs/exercises and seek out whatever magic works for me, magic or not. And all I want to do is reach out and hold the hands of those who are being struck down with health problems no matter how many times they get back up, who get back up no matter how many times they are struck down, who just want to rest.
I just want to rest.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
So... there is that whole thing about "I am having a medical depression episode, I am medically anxious, I am in severe a chronic pain fibromyalgia flare that rates an 8 on Allie Brosh's pain scale, my spasticity is out of control, my hypertonia along with ataxia is interfering with my ability to balance, I'm very dizzy, I'm in a mental fog, I keep thinking of how Rose-kitten died and I start getting choked up, my joints ache and throb so much that I want to become a cyborg right now..."

And I got back from a shopping trip to Barnes&Noble and Target. And Adam picked out a beautiful autumn/spring coat with purple/rose/yellow/brown patterns I never would have considered and it was gorgeous on me and on massive clearance, and Adam himself found a perfect back-up backpack on massive clearance. And I found several new books I've wanted to read including a new Amber Benson book and a new supernatural suburban fantasy series, plus a Pinkie Pie doll from the company Aurora, the same kind that sells Fluttershy on Amazon, with soft simple fabric for hair that was perfect for cats to play with.

And I spoke cheerfully and joyfully with strangers, smiling so much that my disguise and my mask strengthened, and I knew that I could make it through as long as the medications held up, the Soma and Klonopin and Ultram and Vinpocetine and Picamilon and MSM and Vitamin D and Guarana and coffee. People asked me where I got my gold-colored cane and why I had it... and were honestly intrigued to ask about the cerebral palsy, no condescending remarks, no inspiration porn, just requests for details and honest educated understanding. And I was happy to educate, explain, enlighten, and watch their faces light up as they thanked me sincerely and walked off with more information, and that is all I want from things like that.

And the medicines did as promised, and I came home and fell down by choice, and as a wise, wise woman with a PhD told me, It Is Okay To Not Be Okay.

I am not okay. And that is okay. Eventually, I will be okay.

Some quotes I would like to share on trauma and living with illness, disability, life after trauma:

1. "Healing is seasonal, not linear.
It is true that healing happens with time. But in the recovery wilderness, emotional healing looks less like a line and more like a wobbly figure-8. It’s perfectly common to get stuck in one stage for months, only to jump to another end entirely … only to find yourself back in the same old mud again next year.
Recovery lasts a long, long time. Expect seasons."

2. "Whatever doesn’t kill you …
In 2011, after a publically humiliating year, comedian Conan O’Brien gave students at Dartmouth College the following warning:
"Nietzsche famously said, 'Whatever doesn’t kill you makes you stronger.' … What he failed to stress is that it almost kills you.”
Odd things show up after a serious loss and creep into every corner of life: insatiable anxiety in places that used to bring you joy, detachment or frustration towards your closest companions, a deep distrust of love or presence or vulnerability.
There will be days when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.
… Doesn’t kill you.
Living through trauma may teach you resilience. It may help sustain you and others in times of crisis down the road. It may prompt humility. It may make for deeper seasons of joy. It may even make you stronger.
It also may not.
In the end, the hope of life after trauma is simply that you have life after trauma. The days, in their weird and varied richness, go on. So will you."

I chose these quotes because I have heard, over and over and over, "Oh, just get over it. Slap a bandage on it and walk it off. Are you still going on about that thing? It was years ago! Aren't you on medication and in therapy? Shouldn't you be past all that by now? Stop thinking about it so much; you're just making it worse. You're creating negativity in your own spiritual space. Negative emotions and negative thinking will destroy your immune system, you know. Stop stressing so much. I give up! You're hopeless! I can't even talk to you! You're a broken record! You're just making it worse. Why won't you listen to me? Every time you talk about getting worse, your mind and your body really believe it. Get over it! Think positively! Change your attitude! Do what I did! I quit thinking so much about the pain and trauma, and in a few months I was cured. I really think you need more positive thinking. You're bringing yourself down."

And the reason I have merely smiled, nodded, and replied, over and over, "Thank you; I shall consider that!" is because those people don't want to listen anymore, they just want me to stop talking, even though I just want to confide. And so I stopped confiding in them. It was a drain on my energy and time and it just made them irritated at me.

The point is that there is no straight line when it comes to trauma, pain, illness, damage, and negative life events. Some people will never seek treatment, and will continue to live in a post-traumatic stress cycle complete with angry outbursts, emotional breakdowns, and paranoia over things such as medical treatments. There is nothing I can do but be there, even if it is just as a voice to soothe, a hand to hold, a joke to tell, a distraction to offer.

But for me, everything is a cycle. I will never be free. I acknowledge that my entire life, literally, is, was, and will be about recovering from trauma. I have tools to work with. I have doctors who understand me. I have taken all my medical problems on with my own personal arsenal, and I know better than any of the people who dislike my methods how to work with, on, and despite myself. I have my girls, my spirit guardians, my coping mechanisms with human faces, the parts of my brain formed from fictional characters that allow me to handle different parts of my trauma. And so I keep going. Trauma is a part of my life. And that is okay.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
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.

brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
I had a seizure yesterday, recorded it on Facebook, and now must copy it it here, since I always do.

Soo, electric pain and spasticity are now preceding simple partial seizures, previously called auras, which lead to complex partial seizures, hey? Brain, you are awesomely bizarre. But we knew that. Long story short, cerebral palsy and fibromyalgia and epilepsy like to team up. BRB, fighting a seizure, probably not winning. See you all in a few minutes.

The sound of one hand striking a keyboard whilst electricity, burning, floods the semi-paralyzed other half of the body, spastic hemiplegia indeed... hypertonia, ataxia, except the brain has no pain receptors. so why is it burning, I laugh.
I have never been to space until now. Some place in space anyhow. My chair became a shuttle. My copilots were my human coping mechanisms called imaginary friends, yes I know the difference between reality and fiction, my girls are fiction, and if you think I don't understand, oh my you are badly mistaken, and how dare you assume, no wait, that was from a blog post comment thread, never mind.
There were so many stars, I think, at least shining spots far off in that darkness. There were nebulas everywhere. So much color. Maybe it was another dimension? I have never seen outer space like this.
Amara and Alicia held my hands the whole time. Alicia has broken away from the Wonderland force fields to interact with the rest of my brain. This means something neurologically, I think. She is now taking on more than just epilepsy. Oh. I see now. Thank you, Alicia.
I'm so tired now. But I must finish this. It is fading. NO.
I was in my own head, going ninety-nine percent light speed, felt like thirty-five miles an hour, that was a Futurama joke, I don't care if you are sick of my Futurama quotes, bite me. And then, and then, that prismatic explosion of every color blending into white, since that is how white is created, and a howling noise like a perfect wind screaming through alleys, and I was sliding off my chair save for my hands clawing grasping at the leather padded chair arms and my lungs were sucking in air and my lips were chapped and my mouth was dry and my neck hurt and I was shaking.
And Jupiter was meyowling. He is still meyowling. I have to go see what he wants.
You know those dreams where you wake up and realize you are still dreaming? No, I stopped, but it took a moment. My eyes were still open.
I am still open.

And now I must perform intricate physical therapy stretching qigong dance moves to force my left side to function. Love you too, epilepsy. Here comes a Soma pill to begin muscle relaxing and a Klonopin pill to begin mental relaxation. Go!

Update, December 11: Still postictal, but incredibly positive. Light-hearted, even. I feel like dancing.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Some random rambling about my own mind, my imaginary friends, and how my mind likes to invent coping mechanisms that talk back.

One of my imaginary friends, Amara, who is the human coping mechanism in charge of all the neurochemical, neurodevelopmental fuctions, has been interacting with me more and more ever since Alicia (the epilepsy mechanism) and Serena (the pain, fatigue, psychological, neurobiological functions) urged her to show herself more often after I fell into a chemical depression with severe anxiety. Serena and Koan could only do so much.

Amara, at the beginning of her creation, was not even human; formless and elemental. These days, she is human shaped but she loves to take bits of my writerbrain as inspiration. Her ears are pointed and her eyes and hair change color with her moods. She likes to mimic my bone structure and basic figure shape, just with more muscle intensity. Serena says it's because Amara wants to show me that I am beautiful.
Also, when I saw a Google image painting of a woman with elf ears and a unicorn horn, posing with a unicorn, Amara insisted I make it my current Facebook cover photo. She made herself up to resemble like that character while still mimicking my features, including the horn that represents the third eye - just with chestnut brown streaks in her white-lavender hair and honey brown flecks in her intense blue eyes... although none of that is her true coloring. When she made herself human, her coloring randomly became alabaster skin, gold eyes, and pale flame hair, essentially inhuman. But she kept the mirror shape of my skeletal structure and body shape. She even plumped her lips, made her eyes bigger, and made her nose smaller, because she knew I desired that. It makes me smile, which I think she likes. She wears the same jewelry as me, the same clothing colors, the same makeup colors. She is determined to "reboot" the parts of my brain that are having trouble accepting the recent flooding overload of information about these disabilities and chronic illnesses. The name Amara means everlasting, eternal, immortal... which is why she was formless and elemental to begin with. I finally understand why I created her. And she wouldn't mind being the inspiration for any stories I write. I'm grateful for that.
She insists that my jaw, hair, and eyes resemble the jaw, hair, and eyes of Elena Risteska from Macedonia, which I agreed with and humbly accept with a simple thanks. The only way I even knew about Miss Risteska was through searching for shades of brown.
http://upload.wikimedia.org/wikipedia/commons/e/e2/Elena_risteska.JPG
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12861_elena_risteska.jpg
http://userserve-ak.last.fm/serve/_/18051115/Elena+Risteska+elena+r.jpg
https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/p480x480/578088_479387062121006_1822646409_n.jpg
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12858_elena_risteska.jpg
http://tekstovi-pesama.com/g_img2/1/e/28986/elena%2520risteska-10.jpg
She just wants me to feel better, to feel my own positive human emotions. Since Amara is still learning about humanity, she looks to Serena for help. In my dreams, they have amazing conversations.
I'm so glad I created these characters. They help keep me sane, emotionally stable, intellectually stable, and psychically curious. Also, every time I meditate and concentrate on my third eye, I actually feel a short unicorn horn on my forehead.
https://scontent-b-lga.xx.fbcdn.net/hphotos-frc3/1469926_10151743304270684_204893984_n.jpg
I just love that my own mind is creative enough to make up whole people with entire personalities, back stories, individual appearances, individual likes and dislikes, and actual behaviors. They mainly come to me in sleep dreams, daydreams, and meditations. My psychotherapist adores the fact that they exist, which relieves me. It's just one of those things that I, Joanna, have in my brain to help me handle all the stuff that life gives me. Awesome.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
Seizure. I yowled OH FUCK three times and grabbed the arms of my leather task chair and I felt my head fall back and my whole body spasmed and my eyes closed and
I was running so fast through the forest following Alicia; her long long blonde hair streaming, and she was shouting, and there was such a bright light, a portal like before, and Alicia was yelling, and she reached behind and grabbed my right hand (left hand was hanging with spasticity) and told me Only a few more yards I promise you'll be fine, and we were in the portal of light before I knew it. On the other side, Serena and Amara had their arms open, and Serena grabbed me and held me tightly, and the warm tranquility of her power washed over me. Amara put her hands on my head and murmured something, like a spell or incantation, and I felt so relaxed my muscles fell loose and I almost stumbled. Serena asked me, Do you want to lie on the bed with Koan? I said, Yes please. The two women supported me and led me to Serena's mansion, to her guest room, my room. The calico kitten was curled on on a pillow, but she woke up mewing and trilling, paced the pillow, and when I was settled, she carefully crawled onto my chest and assumed the meatloaf position and purred loudly and nuzzled my face. Amara put her hands against my cheeks and murmured Oh sweetie, I will take care of the neurons and synapses, you relax. And I started crying, just a little, and I whispered, I love you, I love how I made you all up, thank you for being in my brain. And I closed my eyes
In the real world, I came to, gasping and whimpering, my hands clenched spastically against the arms of the chair. I had to write this. 7:33 to 7:35. I am wildly energetic in my postictal state. The migraine is worse now. I've taken medicine. I'll be fine. I just had to write it down.
Adam is on his way home from work. He called, and he knew right away that I was not braining well. I love him.
Rose had jumped on my lap immediately, and nuzzled my face, and purred and purred.
brightlotusmoon: (Snow White Blood Red Warrior)
Note: Seizure.
Dreamstate. Melting clocks, supernovas, galaxies whirling like pinwheels.
The looking glass shattered when I fell through. Alicia my guide held me tight and whispered, hoarsely, "Those hands of time and space will not move unless you stop watching."
The melting clocks began to burn.
Alicia was screaming for Amara to come get me. Wonderland looked like a rainforest on LSD.
Amara slid her cool hand into mine and said, "Neurology is hell, and then you live."
I was wrapped in a silk cocoon, shoved through a broken cracked pathway of shorted neurons and synapses. Amara was with me. When we broke through, I heard Serena say, "I'll take her now. Thank you, sister." And I heard a kitten purring so loudly it made me vibrate, and I felt pure comfort. I managed to mumble, "I need Amber to wrap me in safe." But it had already been done.
I love my spirit guardians, also known as my human-shaped coping mechanisms, also known as my creations with minds of their own, also known as awesome psychological methods.

In a discussion with Naamah yesterday, she referred to me as "so inscrutable zen-master... really at peace with the fact that sometimes, things don't make sense... and don't need to." I used to quote Chang Tzu without knowing it was Chang Tzu: "Use understanding to understand what can be understood with understanding, and then stop." and when people asked, "Wait, how many 'understandings' are in there?" I would reply, "Yes, exactly."
And so Naamah suggested that if Serena had a companion, it would have to be a little koi-colored calico cat named Koan. Today, my mind remembered that and ran with it, constructing a six-month-old calico kitten with koi patterning, named Koan. And she will be infinitely gentle, patient, and a deep lover of head-butts, cheek nuzzling, face licking, lap sleeping, and Being There When I Need Her.


I'm back in reality. I must rest now. Hi. I believe the seizure lasted approximately two minutes. I can type, with exhaustion, but reading is becoming fatiguing. I will do things to recover. Yes.
brightlotusmoon: (Snow White Blood Red Warrior)
I cannot... form thoughts. But I must write it. It must be recorded.
Three minutes. Gone down the rabbit hole and looking glass for three minutes.
Left arm is almost completely hemiplegic. Sensation, barely movement. Nerves are ghosts. Like fire.
Alicia. Alicia was there of course. Bursts of light behind her. She held me tightly. She wore gemstones around her neck, wrists, fingers. She called out incantations.
I disappeared. I heard Serena call my name. It was too bright to see. I was carried like a sleeping child passed from one caretaker to another.
I sobbed. I could barely speak. I said, "My skin hurts."
Serena and Amber murmured soothing words and stroked my hair, my head, my arms, and Amara held my head, fingers becoming transparent and moving past my skin, into my brain. It felt like a soft gentle massage.
I am typing with two fingers, correcting as I go; that is how I always did it, how I must do it.
So much energy. So much light. My head is full of light. Amara is with me now, holding me gently.
I am fine. For now.
brightlotusmoon: (Snow White Blood Red Light Pale)
You know it is a bad day when...

A Cerebral Palsy induced fall against carpeted stairs leads to a Complex Partial Seizure which leads to a Panic Attack with wild animal sobbing so intense your partner comes up and worries to death over you and carefully leads you to a couch and gives you water and holds you.

"It's just stairs," you tell yourself over and over. "You can maneuver them. It's just stairs." And at the top, exhausted by victory, you lay on the floor, weak as a new kitten, heart and head pounding to near bursting, crying until it sounds like laughing. And maybe all you can do in that horrific posictal state is laugh. On the inside. Because Epilepsy is a monster and has no qualms about gaining allies.
Now it is time for Fibromyalgia to have its turn. Burn body burn.

I am so tired. I have no more synonyms for exhausted, fatigued, beaten, weakened. I am done.
But I will never stop. If I cannot be myself I will be a dragon.

For those who know my Healthy Multiplicity: indeed, Alicia and Amara were like drill sergeants in my mind. They were the only things that kept me climbing those mountainous stairs. I love my human coping mechanisms.
Typing doesn't make me tired ever. And this must be written.



So... *cough*
I am okay. But I am not okay at all. So many painful things are inside my brain and my body.
It is okay to talk about that, right? To be not okay? To try to pretend to be okay?
See, that is why I love online friendships. Because if I cannot speak without bursting into stuttering wild sobbing, I can type slowly and people will understand. Right? Oh, my everything hurts.
I could say I have a muscle pain, or a joint pain, or a migraine... but I have everything pain everywhere. And I don't know how to explain it without it coming across as "My pain is worse than yours!" and I don't want to do that. Because all pain is horrible. My pain is no worse than yours. Pain is pain is pain.
I don't know what to say. My brain is so everywhere. I feel so split open and raw and drifting. I think some of the things keeping me together are my fictional characters, who still demand their stories.
I want to sob and scream and howl until I am so raw that I cannot speak. Is that okay? I can do that, right? Nobody will bitch at me for complaining, right? I just don't know. I don't know what to do. I don't know how to feel. Fear is something that feels flat but understandable. Like am emotion I am aware of but unable to truly experience in a deep true way. Like crying. It is a thing that is happening. I just feel confused. Why do I feel?
You know?

Oh, yes. The seizure. Oh, Alicia. She appeared to me so quickly, so fiercely, I had no choice but to grab her outstretched hand and run with her. She yelled, "Come with me now! You need to get through the looking glass! There is no time! Amara is waiting! Serena is waiting! Go, go, go!" and she almost shoved me through the portal, and all I remember is Amara catching me in her arms... Amara with her truly calico hair and her stormy eyes of deep purple and darkest blue and pure gold, her short slim muscled hourglass body that held me in an iron grip, my mouth against her olive-colored neck, and our tumble to a cavern floor that was lit with sunlight and moonlight, so I could see her properly, how she was only a few inches taller than me, her mouth pouty and full, her oval face the dream of every American woman in a plastic surgeon's office, her straight teeth bared in strain. She got to her feet gracefully and looked down at me and said in the voice of temple bells, "Rest now. Serena will be here soon. I've never fully introduced myself, but that can wait. We have so much time."
I shook my head. "Alicia said there was no time--"
Amara smiled and entranced me. "Only in her dimension. Here, there is every time. I am everlasting, after all. I love and guard your entire mind and brain, remember? I work with my sister, Amber, who encases everything in your varied forms of spirit and soul and energy and power. Alicia and Serena are limited. Amber and I are unlimited. We shall be with you until the end of everything. You hurt badly. I sense it. Serena will be here in a moment. I will stay with you."
I stared at her. "I've never known you until now. I love you."
"Yes. You were meant to. I am the culmination of your neurology, your neurochemistry, your biochemistry, the stuff in your head that help make you the things that are you. A Self. A Mind. A Brain. I change as you need to change. I will always be here."
Amara my immortal began to slowly fade, and Serena came running. She gathered me in her arms and murmured soothing words, and suddenly I felt as calm and as safe as I ever could.
And then I awoke, and I was a person climbing the stairs.
And I climbed the stairs, sobbing and forcing myself, and at the top of the stairs I lay crying, and then my husband found me and helped me to my work couch and gave me water, and I couldn't talk about my girls, but it was all right. I would be all right.
brightlotusmoon: (Snow White Blood Red Light Pale)
I stretched the hell out of my back and legs and arms. It was lovely. I did it my way. I am very pleased and very satisfied. I won't discuss the various burning barbed wire pains that are distracting me even through the codeine, but I will talk about the beautiful meditative exercises I've been working with. Peaceful, serene, tranquil, calm, relaxing, refreshing, fantastic in multiple ways. The scene always changes, but always appears Zen in some way.
I had mentioned that my human coping mechanisms, my spirit guardians, had begun communicating with each other deep in my brain without my conscious knowledge, which leads me to believe that parts of my brain are starting to come together as part of the story, as my unlimited imagination and writerbrain is starting working on a whole new, amazingly unique, private story all on its own. No wonder I have been working on Amber's story beyond these bits of my brain. Amber has also given me free reign to write her as a fully developed character and not just a created coping mechanism.
In general, I am just... very happy.
And the funny thing is that I am in a depressive episode. I have all the symptoms, and I am quite conscious and aware. But I have things that are helping distract me: Talking about my imagination and my creativity, talking about the triggers for my panic attacks and my simple seizures, talking about comedy TV shows and powerful fiction books. Somehow it all is able to keep the major depression away, although it is a very intense fight. Sometimes I find myself weak and struggling, even physically, as thoughts of worthlessness and hopelessness, frustration and terror, pessimism and guilt all slam into me and my wall and my shell.
I suppose I could say I am happy. I feel happy.
But... what is happiness?
"Happiness is a mental or emotional state of well-being characterized by positive or pleasant emotions ranging from contentment to intense joy." Sure, I feel those things. However, there is a strong undercurrent of the exact opposite.
Brains, man. Brains are wild. Brains are weird. Brains are so complex. One day, I want to have an MRI and see exactly what my brain is doing. I want to sit with multiple brain specialists for hours on end, and just... talk. I want to talk about my brain.
Brains, man.
brightlotusmoon: (Snow White Blood Red Light Pale)
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?

jowitchzen2

Maybe it was the super moon. Maybe it is the heat from the sun now. Maybe it is anything.
brightlotusmoon: (Snow White Blood Red Light Pale)
Brains, man. Brains are weird.
Early this morning I woke in smack in the middle of another panic attack. Crying like a cornered wounded panther kitten and everything. No reason at all. But then I realized that whatever wanted to eat me couldn't fit through the little cave I was huddled in. So I did that breathing exercise that Beca taught me: breathe in golden light, all through the spine up through the crown, breathe out silver light from the spine, don't stop breathing.
And then of course came the complex partial seizure. Because brains, man.
But! I had some crazyweird fantastic "visions" while in the seizure. Alicia's Wonderland dimension in my mind is becoming really elaborate.
She mentioned talking to Amara, and when I came out of the seizure all I could think was "Wait, what? But my brain guardians don't talk to each other like that. I mean, okay, Amara handles every neurological and psychiatric fuckedness outside of epilepsy, but still. Amara doesn't talk to Alicia. Not even Serena talks to Alicia. Alicia doesn't go outside of the Wonderland gateway. Why are they talking to each other?"
Brains, man. I swear. I think this is some sort of representation of my whole brain trying to come together and work out solutions. All my private human-faced coping mechanisms (Alicia, seizures; Serena, pain and fatigue; Amara, neurology and psychology; Amber, systemwide maintenance) finally mechanizing cope as a giant bodywide thing, maybe.
Shrug. Brains. I don't know. They're weird.

Anyway. Those with unusual coping mechanisms will get it. You know. The coping mechanisms born out of made up fictional characters. Because why not. Because brains are weird. You know. Like a giant pod of interdimensional psychic dolphins circling a solar system and constantly communicating the gossip around the universe. Because dolphins are cool like that.
What?

planetdolphinlove
brightlotusmoon: (Snow White Blood Red Light Pale)
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
awaken__warrior__and_rise_by_shinga-d69b9nc
(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.)
brightlotusmoon: (Snow White Blood Red Light Pale)
You know, it is incredibly difficult to stare terror in the eye and snarl "No, you beast, I AM THE DRAGON" when you have no more hope or confidence or battle left in you.
Most chronic pain advocates describe pain and disability as the "destructive, sometimes evil dragon that must be fought." Fuck that. In this world, I am a blend of dragon and phoenix and whatever dragon they think wants to hurt me can scream it to my face; I will scream right back.
My reserves have been scraped clean. I need to rest. I have a high fever and can barely speak. And I just learned that my digital thermometer turns red and loud above 99.6. LOL. I am my own dragon. And this dragon needs to curl up on a pile of gold and copper and silver and gemstones and go the fuck to sleep before epilepsy dominates.
I am fine. I will be fine. Somehow I always turn out all right.
Until we meet again, warrior sisters and brothers.



Note: no makeup. Except lip balm and moisturizing lotion. But no fear. Not now. No time. Apologies to Body Dysmorphic Disorder.
brightlotusmoon: (Snow White Blood Red Light Pale)
If you are with me in person, and I suddenly yell out and fall to my hands and knees and scream, do not be alarmed. Gently help me stand and help me to a soft place to recline. I may be unable to speak properly, and I may be unable to remember certain things. I may lick or bite my lips, I may scratch myself or pull my hair or vocalize oddly. Take me in your arms and say comforting words. If I start crying, let me cry. Tell me everything is all right. Kiss me gently on the forehead. Offer me tepid water, or coconut water, or juice, or tea. I will need to be hydrated. If I get up and start stumbling around, take my hand and follow me. If I head toward a bathroom, help me in; I will most likely be able to take care of things on my own, as it will be a very automatic process. When I am done, lead me back to the couch, chair, bed, etc. Continue to hold me or hold my hand. I may be very dysphasic and emotional. I may also be very empathic, so do your best to stay calm, with a good bedside manner. Offer me foods like fruits, crunchy bacon, pastries, dairy, vegetables, protein. No bread; I might choke.
If I start speaking oddly in a very intense manner, it may be due to one of my spirit guides helping me speak. Serena, Amara, or Amber, since Alicia can't speak outside the rabbit hole, looking glass, and Wonderland forest that directly affects my epilepsy. Serena helps me through chronic pain and fatigue. Amara helps me through any psychological distress such as anxiety, depression, and fear. Amber monitors my entire consciousness and soul. There are reasons they are named their names. These guides are fictional characters I created long ago, characters who took on their own "personalities" to become a sort of overall coping mechanism. While Serena and Alicia remain deep inside my psyche, Amara or Amber may speak through me and alongside me to work my mouth and voice if needed. You see, Amara and Amber have been with me in various forms since I was born; my brain created them in my intense creative imagination as purely fictional ways of coping with my life. Serena and Alicia came later, as ways to continue fueling that creativity. These girls are not real, but they are certainly helpful.
After I am affected by a seizure, I may also be affected by various complexities from spastic ataxic cerebral palsy: fibromyalgia, sensory processing disorder, synesthesia, hypersensitivity, ADHD Inattentive and Over-Focused Types, Obsessive-Compulsive Disorder, hypertonia, hemiparesis, hemiplegia, severe anxiety or even actual panic, problems speaking and moving, drooling and possible gasps, choking sounds, or odd vocalizations, memory disintegration, spasms, emotional outbursts. Try to not be surprised. This is technically normal for me. You can ask me questions and I may reply one way or another
Complex partial seizures via temporal lobe epilepsy are different for most epileptics. For me, having cerebral palsy, these seizures can be extremely fascinating and bizarre.
I will add that this all happened approximately an hour before I wrote this, and the main reason I was able to type this out was because Amber and Serena helped. My body and mind are both in an altered state. Reality is swimming right now. I just banged my arm against the wall, and the only reason I felt it was because of that part of my brain that is still processing the outside world.
Yes, please ask me questions of all kinds. Nothing is off limits. Speaking out helps me understand my own brain and my own intense neurology.


***
Edited to add:
I just got a really fascinating comment on Facebook since I copied this whole post there. I'm going to post the person's comment and then my comment. I'm still not sure what to think. Was I too harsh in my reply? Also, I still don't know what sort of point they were trying to get across:
Read more... )

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brightlotusmoon

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