brightlotusmoon: (Asha)


Oh, Okay. That was very, very quick. Oh, that was less than a minute. So much energy, so much chemical screaming. Oh, Oh damn. My head is pounding. My fingers can't stop flying over this keyboard. I should go to bed. Oh.
Complex partial seizures are fascinating. Complex partial seizures that secondary generalize into Tonic Clonic seizures are even more fascinating and are rather grotesque. No wonder people were terrified in the past.
I remember grasping the leather chair arms to stop my body from catapulting away. I remember being aware of my mind, but not my body, as I watched my body from a window in my mind. I flailed and spasmed and strained and convulsed gently against the chair, and I fought gravity like a woman possessed. I was completely silent. My hair was flying all over my face. My body had no choice. Something had to release. Like a taut wire snapping. My wrists had strained from working to help my fingers stay gripped on the chair arms.
Things are painful now. Too tense. Tiny spasms now.
Oh, epilepsy. I do not appreciate you at all. Nope.



Also, I am technically okay. Postictal state has left me drained, exhausted, weak, tired, foggy, floating somewhere between hungry and not hungry.
I'm glad I wrote it down. The seizure, I mean. Sometimes I remember better.

Stretching, stretching. Massages. I don't remember what else.
Well, er. At least the ligaments in my knees feel less tight?
Also, seizure fogginess blended with fibromyalgia fogginess makes Joanna something something.

Also, according to my blog records, this was the first seizure in three months, so, hey, that's good.

http://m.livejournal.com/read/user/brightlotusmoon/tag/being%20alice

Yeah, well.
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)
My modified Disablility Compensated Qi Gong exercises always help, mentally and spiritually and psychologically and physiologically. Like yoga, except Fake Yoga Cripple Style that is not actually yoga. (FYCS. FIX. Ha ha ha...) (Or hey, Fake Yoga Cripple Style Modified Exercise. FYCSME = FIX ME. Ha ha. Wow. Dude.)

But it isn't helping today. I'm too Hollow, which is my term for deep major depression. I'm too Postictal, after that unexpectedly awful seizure yesterday and its aftershock which were tiny seizures for hours. Emotional responses are foreign and results of emotion are mere symptoms, like crying and laughing. I will meditate again, do more qigong work, and breathe and much as possible.
FYI. I am having an episode of pure major Depression plus major Anxiety. This is accompanied by mild memory loss of the past two days. Everything is foggy. I know I should be upset about something, but I cannot feel upset. What is upset, anyway? I think I hurt myself emotionally yesterday. I wish I remembered what it was. I believe it started out with false happiness. Remember that weird assumption of some sort of hypomania? I think I was outside of my rational mind.

Back to special exercises.
People keep suggesting and recommending breathing exercises. I know all of that. I know people just want to share their personal remedies. I love it. Please don't think I am rejecting you. I love hearing your stories. Even the stories about yoga. I wish I could explain why just seeing or hearing the word yoga evokes a sad, upset reaction. It isn't that I am unable to do yoga. It is just that yoga extremists do not listen nor care about my need for compensation. My body was born crooked. I cannot form a proper straight line even if I held on to something. No amount of cajoling, insisting, or pushing different forms will change that. Please don't do that. Please just accept that I have to perform qi gong differently, and that qi gong included poses that are similar to yoga, and that yoga is not the greatest panacea of healing holistic practices. This is part of why I don't want to visit California, which makes absolutely no sense and makes me look prejudiced.

So. Please, please do talk about how much yoga is healing you, because that is beautiful and I am genuinely, honestly joyfully happy. But if you wish to suggest a yoga pose that can be modified for someone with a shaky, spastic, crippled body, please suggest an alternate form. That is all I ask. There is no such thing as a real panacea, even in the botanical world, even in the plant and herb world, and certainly not in the exercise world. It is entirely possible that I will find a set of yoga exercises that will really, truly help me, and I will join the ranks of yoga enthusiasts. Anything is possible. Nothing is off limits. Except evangelism. If I wanted something pushed down my throat, I will drink water mixed with special fruit and plant powders, like sea buckthorn and moringa.
This is coming from my years as a holistic enthusiast and pusher. I was bad. I was essentially an asshole. And then I learned that it was just wrong. I never want to do that again. Just because something works perfectly for me does not mean it will work at all for someone else.

Any form of good physical-spiritual combination exercise, be it yoga, qigong, taichi, strength training, cardio, dead lift weight, isometrics, plyometrics, dance, hardcore dance, etc, is wonderful and beautiful and strengthening, and will help everyone in some personal powerful way. That is the point of exercise.
I love you all. If you really want to help me, don't push me. Just guide me.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
According to Adam, there were two seizure incidents. The first, during foreplay, was a complex partial, from which he had me rest for a while. the second, after the sex was well over and while I was heading toward the bathroom to fill a water bottle, was a secondary generalized seizure, in which I cried out, fell to the floor on my side, and started twitching. Adam heard me and hurried out from the bedroom. He gently moved me onto my back to better look at me, and he stroked my face until I gasped like a drowning person and started sobbing and apologizing. I remember that part.
I also remember the part where Luna came meowing and rubbing against me, licking my face and purring loudly. I said to her, "You're late. But thank you for the comfort." And Calliope came running to me, purring and trilling, but Luna rebuffed her. Calliope was undeterred, because she is generally unfazed. She still stayed close by and stared at me.
I still count Luna as an emotional support cat, even when she arrives after the fact.
I wish I could remember Being Alice. Obviously both times Alicia helped me through. I just can't remember.
Adam said that the first time left me with a severe palsy accent, a stutter, and a complete inability to move my left arm and leg without forcing myself - seeing as how I am mild, this always freaks me out, even though I've gotten used to it. The second time, I cried and spasmed, but was able to respond and move. My left wrist hurts stabbily and achingly from the damn flexion contracture. Both that and the other issues are usually mild but always worsen during severe fatigue, seizure episodes, severe moments of pain, and overstimulation - which, as Lana Kane says, duh, of course happened. My brain hurts. Screw it, my everything hurts and I'm still spastic. I'm going to bed.
It is wonderful to have my husband home, even for a few days.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)


I had a seizure. I didn't mean to. It lasted three minutes. Complex partial. I'm so sorry. I suck at everything. I can't think. Word fail. Word flail. I'm sorry. I have to something something rest and medicine. I'm sorry about the seizure. I remember Alicia's kiss. I remember her peace. I remember Koan's purring, I remember Serena's embrace. I remember whiteness and vortex and confusion. I'm so sorry, brain. Something something take your Klonopin and Passionflower and rest easy.
Maybe winter. Maybe I don't know. Things hurt. I'm just cold. Everything is my fault.

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)
Also, I think I had a seizure before waking up this morning. When I spoke with my mother, she said I sounded like I'd had a seizure. I am starting to... remember things. My brain feels haunted and full of kaleidoscope wilderness. I vaguely recall seeing Alicia. I vaguely recall seeing Amara, the way they struggled to keep my neurology stable. Amara, pale like alabaster, kept changing her eye and hair colors so I knew she was emotional.
I need to go do... the... you know, the post-seizure, the postictal things, the management, the getting better procedures. It has been a long long mind day. I did not know why I have been so tired. Luna in particular has been following me around, meowling like a queen calling her kitten. She has been licking me whenever she gets close. In that same vein, Rose has been trilling for my attention when I come into the bedroom, staring at me with very wide eyes. She begs me to pet and hug her, and now I realize why. Even Jupiter has been yowing at me when he sees me.
Luna is curled up at my feet now. When I go to have a shower, I will leave the bathroom door open just enough for her to come in, in case she wants to watch me.
Cats know. Cats always know.

I've been feeling randomly ill all day with fibromyalgia flares and allergies. And, now that I remember, seizure aftereffects.
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)
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... )
brightlotusmoon: (Snow White Blood Red Light Pale)
Call me Courage.
It takes a lot of strength to talk about life like this.

So, I just "woke up" splayed uncomfortably in my comfortable leather task chair, head lolled to the right, mouth open and drooling, left side full of hemiplegic hypertonic hemiparesis, right side spasming in its own way, brain stuffed with cotton, voices inside me screaming "GET UP, GET UP, OPEN YOUR EYES, DO IT NOW. JOANNA! WAKE UP!" Voices I recognized as Alicia, Serena, Amara, and Amber - all four of my spirit guides, aka healthy multiplicity selves, aka characters I created long ago that took on lives of their own deep inside my damaged brain. I have never, ever heard them in chorus. I felt something like a massive SHOVE - very similar to a hypnic jerk, which is actually extremely common during testings for epilepsy. Hypnic jerks, also known as hypnogogic jerks, night starts, and sleep starts, are those weird sensations you get between deep sleep and waking when you suddenly feel as though you have fallen onto your own bed from high above.
There was no panic in those cries, simply intensity. They were all desperate to bring me around. See, Alicia is the one who guides me through the seizures and brings me to Serena, who guides me though the pain. If needed, Amara steps forth to ease the anxiety, panic, and fear. And although Amber has kept silent and hidden for decades, Amber is the one who soothes my entire soul and my entire consciousness with a blend of magics and quantum physics that I still cannot translate into common words. However, they have always been separate and individual. The only ones who have ever communicated in any way have been Alicia and Serena, if only to pass me between each other with nods and whispers.
And so I awoke, or came out of the seizure, twisted and deeply exhausted from cerebral palsy complexities, compounded by fibromyalgia, sensory processing disorder, synesthesia, and hypersensitivity. For several agonizing moments, I did not know where I was - and the only reason I knew my own self was because the Guides poured all my memories quickly into my mind, into the live, non-damaged bits of my brain. I know that doesn't make any real medical neurological sense, but I cannot explain it any other way. The only reason I am typing this up is because my hands are moving of their own accord. I have a silly feeling that Serena and Amber might be helping me. Keep in mind that these women are not "real" - they are fictional characters. And they know it. But they are parts of my mind and have always been. I am still wracked with deep anxiety, and Amara is wrapping me in the most comforting... things? Images and sensations of fabrics. Ideas of beautiful imagery? Tiny mewling soft kittens happy and adored and warm? Anything to keep me calm and happy and anything to keep me from breaking down in screaming tears. I can feel an episode of clinical major depression creeping up on me.
And I still do not know why any of this is happening. I have lost small memories of today. I do not mourn them too much. I just want to feel better.
Can someone tell me a story, please? Any kind of story?
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Okay, seizure.
Happened during cleaning - and cleansing.
Charlotte was over to help clean up my work room.
I sensed it happening and went to the couch.
My body went rigid, flailed and danced a bit, curled in on itself. Alicia was behind my eyes, whispering. Serena was at the corners of my vision, smiling. I trembled, let loose with a string of curse words, woke up hard.
When Charlotte came back in, we used magic and essential power to help calm my brain. I sprayed myself and the corners of the room with my favorite perfume, Inspiration by iiTawk (http://www.theskinrevolution.com/_iiitawk.html). It helped reset and refocus my temporal lobes.
We are still working, moving to Channel 404 Dance/Electronica.
Alicia's forest had been full of shades of purple, blue and green.
In this postictal state, I shall dance the hell out of myself.
I am made of magic, you know.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Crazy seizure was crazy. I was in body unable to... to brain. I knew and saw things happening. Couldn't act or react. Felt and saw myself. Rocked back and forth, gripping the arms of my chair and rubbing the leather. Lip rubbing, lip biting. The world was off. I was too hot. I closed my eyes. I saw Serena, my coping mechanism, she was holding me. The world behind my eyes was full of kaleidoscope light. I heard voices, like static. One voice stronger than the others said "Relax, relax, ascend, ascend." I let out a long cry and fell back against the chair and gasped heavily. My hands hurt. Everything hurts. I am typing very slowly and very carefully and correcting myself out of sheer strength of habit.
Three minutes. It felt forever. I feel overheated. Rose kitten has jumped onto my lap. Rose kitten has been on her back legs, front paws against my neck, cheeks nuzzling my face, mewls loud in my ears.
I have Whole Foods Nutrient Enhanced Water. Orange Mangosteen. I will drink that. I am thirsty. I can't stop biting my lips. I can't stop wanting to cry. My facial muscles keep twitching and spasming. A grotesque smile, a grim eye twitch. What am I saying? I wish I knew. I will look back on this with librarian eyes, I will look back on this and try to translate the quantum psychic metaphysics underneath.
I need lip balm. I have plenty of that. My head hurts and I feel too hot.
I will get over it. I always do. Bed soon anyway.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So there was a seizure. It lasted four to five minutes. I am ridiculously discombobulated and typing very slowly. Dysphasia abounds. Typing is easier than talking. Spasticity is violent. Shaking is violent. Burning, stabbing, electrifying, gnawing.
My Rose kitten was on my lap and purring and licking my face and my face. I was away. I sensed my body, arms crossed, rocking back and forth, falling back in the chair, mouth open, head to the side. I heard things. Futurama on TV, dialogue mushy. My cat purring. I felt unchained and inside a plunging elevator. I begged for Alicia. Everything was so dark. Someone took my hands, hugged me close. I glimpsed long shining blond hair I cried and yowled. I just wanted home. I felt too weak.
As I began to awaken, my first words were "Rose... Rose... kitty..." and my right arm lifted and I managed to touch her and pet her. She nuzzled my fingers. I cried and gasped.
Now the world feels so strange. I must sleep. Is it all right to sleep? I remember days, weeks, months ago... someone yelled at me and insulted me. I don't remember, I don't care. I remember minutes, hours ago... someone was talking about makeup colors to ease my panic. I was comforted, entertained. People were commiserating. I felt like a member of a powerful group. I was a warrior in the world. I am a drained tired weak sad warrior. I am covered in blood. I want to sleep.
Can I sleep?
I am a Dragon Princess, too.
I can't remember the episode; only cool, velvet darkness, and a blond woman holding me. I remember breathing in cold dry air. I remember thirst. I remember crying so hard.
My skin hurts.
I am typing this with two fingers.
Can I sleep now?
My head hurts.
My soul hurts.
I am still a warrior.
Can I rest now?

I must write this down. I must, I must. I need records. This journal must know. As much as I can.
Two fingers. It hurts so much.
Those pain pills are working well. I am grateful.
I am thirsty. I am dizzy. I may crawl to bed. I have many canes. I will not crawl, not if something can hold me up.
I want a hug. A cuddle. I want someone to say, "I love you. Everything is wonderful."
Even online friends can do that. I do not care what anyone says. Some of my greatest loves are online, states away across the country, and I will never let go.
I love you. Everything is wonderful.
May I sleep now?
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Last night was deeply not fun and very aggravating. I have gotten surprisingly good at typing through the start of seizures and the end of waking from seizures. Facebook is testament. I typed out a whole status post about how I was about to go under. I went under. I came out of it. I typed out a whole status post to say I was okay. I don't actually remember it. Hah.

I remember feeling my head fall back against the back of my leather chair, my whole body sinking down, my mouth falling open. I went inside my brain, and already I was grasping Alicia's hand and we were running. No surroundings, just light and color streaming past. My head was pounding and my legs were burning and I desperately wanted to rest, but her grip was like steel. Her voice echoed: "It's okay; we're almost at the end. You can make it." I began to cry. I whispered, "I want Serena." Alicia said with pure compassion, "She's right at the end. I promise." I focused on her blond hair flying behind her, on her bright blue eyes and the determination glowing in them.
There was an end. Some sort of tunnel, rocky and jagged. Through the opening, I could see a wall made of bronze. A figure was moving toward the opening, and I knew that long long dark hair, those deep green eyes. I flung out my left arm while squeezing Alicia's hand with my right hand - I couldn't let go yet or I would be lost. Serena reached out her right hand, just shy of the force field around the opening. Alicia pushed me far enough to where my arm passed through and I could grab Serena's hand. The women nodded and smiled at each other, and Serena pulled me all the way through and gathered me into a tight embrace. I closed my eyes, opened my mouth to speak, to cry...
My body twitched and jerked. I opened my eyes, feeling my eyelids physically flutter. My neck hurt. My shoulders and back hurt. My head hurt. Everything hurt. I couldn't go back to Serena unless I put myself under again. I let myself cry and weep for a few minutes. It took a while, but I was able to drag myself to the bedroom, where Rose and Jupiter curled up with me and purred me to sleep.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
So, yeah. This is something what happens when you combine mild cerebral palsy with moderate fibromyalgia, temporal lobe epilepsy, and overall neurological damage.
Even after taking all my proper drugs and supplements and exercises, I find that my body is just continuously not happening. Like, literal muscle weakness and fatigue that requires a cane and slow walking and never knowing if things will speed up. I can be chatty and friendly and social to a point, and then get drained. And things still hurt, but in all sorts of different ways that are all uniquely separate. It is...
Hmm...
It is...
See, my body feels loose, but not relaxed. I could fall over easily. My proprioception, my spatial orientation, my depth perception, and my sense of full direction is all shot. I must actively, consciously tell myself to move this way, to move that limb, to watch out for those things over there. My brain folds in on itself, deciding that physical reality is annoying.
Like... last night. I was climbing blindly into bed in the dark, prepared for lovemaking, and the bed felt like a city. Husband had to pull me on top of him and let me know where I actually was in relation to my surroundings. It was trippy and surreal and weird in a... not good, not very bad, just a creepy way. But the orgasms were transdimensional and I was thrilled to separate from my body for a few moments. I think the darkness helped. I didn't know where I was, my entire self felt extreme, and I could release myself without even thinking about the physical. It was very, very tantric and mystical.
Just an example. Sexuality is just one way to breach the chasm between body and soul, blah blah blah, not focusing on body but on spirit, etc.
Hang on, I lost my thoughts...
Ah, yes. Also, the sensation of being in multiple dimensions at once. Oh, that feels fascinating.
I have been feeling like this all day, no matter how social I get and how strong I feel.
brightlotusmoon: (Snow White Blood Red Warrior)
Had a complex partial seizure while on the stairs. I was melting until my head touched the carpet of one of the steps. In my brain I was traveling so quickly, with Alicia by my side, that the world was a blur. I was drooling. I couldn't take deep breaths. Everything was spinning. I screamed for Serena, and she wrapped her arms around me and smelled like resins of amber, frankincense, lotus, and coffee. I managed to suck in a deep breath.
Rose kitten was right next to me when I came out of it. I called out and Adam helped me stand so I could pull myself up the rest of the way.
I still had my cell phone in my limp, frozen, ghostly left hand. The seizure had lasted three minutes. I am typing this mostly with my spastic right hand. I will be fine. Repeat. Etcetera. The trigger was emotional excitement of unknown origin. My head hurts and my neck hurts. This is a documentation. I am exhausted and drained and I will still do what I was going to do, just far more slowly. I know my brain, and I will be fine.

Addendum: I do not want or need to be told that my medications might not be working, or that I should try something else, or that some other epileptic person did something to heal their seizures and therefore I should do the same, or any other platitudes or cliches regarding outside non-medical opinions about my health, unless you are actually in the medical field. I know what to do, and it is helping me just fine. The only reason I am posting this here is because of the many many disabled friends for whom I am advocating and spreading knowledge and empathy.
brightlotusmoon: (Peaceful Dragon Model 2)
And now I am left with a complete sensation of pure exhaustion, a left arm that doesn't want to do anything but curl up limply against my ribs and be a ghost, a left leg that just wants to drag limply and be a ghost, and a head that feels full of sky. It will all fade gradually, and it will be irritating and aggravating while it lasts, but I am still here. I still exist. That matters.

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March 2015

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