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.
brightlotusmoon: (Asha)
From Facebook, because I am very tired:

-So, here I am in my little hotel style room at an official neurology sleep center. My tech, Peter, is sweet and funny. I even have a big shiny red button to press when I need him. It's in a pack attached to my waist. My head is wrapped in gauze. Electrodes are hooked to my skin and wires are trailing at my feet. Adam took a picture. Go see!
The bathroom has a shower with a chair!

-LOL, gauze and sexy electrodes.
The reason for all this is because my neurologist is concerned about the several seizures per month. Hence, a ten hour EEG study. I get naps and Adam brings food. And when it's all done, the doctors will see if anything significant happened. Even if I don't have any seizures, this is a good move. For SCIENCE.

-Adam is bringing me lunch. And then, more specific tests will happen. Probably another nap? Apparently, the EEG has not shown any seizure activity. I haven't even needed to push the shiny red button yet, which amuses the technician.

-All done. I need a shower and a nap. Adam will take me home and then I'll wait for the neurologist to call. I'm actually disappointed that I never generated any seizure activity. It makes me doubt my brain.

-The days when you're just too exhausted to get back up and shampoo out the electrode goo from your hair. I'm just going to take a little nap. Then I'll get that shower. Just a little nap.
(Spoilers: I slept for one hour and took a really long shower with like three shampoos and two conditioners.)
brightlotusmoon: (Asha)
Some postictal stuff happened. Some preictal stuff happened. I don't recall the ictal stuff. Yesterday and the day before were fascinating blanks. My entire lower back, from muscle to nerve, screams in pain and then cries in pain. That has been the normal thing. So, normal Shrug.

I've been reading books. I've been watching the Simpsons marathon on FXX when I can. Occasionally, I've fallen asleep to it. What a lovely idea.

The extracts of mangosteen and noni have done their best to help with pain and such. I approve.
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: (Magic Goddesses)
So, I had what I considered a palsy victory and agony simultaneously.

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

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

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

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

Damn, I really hurt...

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

Now, today, the day after, I am slowly preparing for my first meet and greet appointment with the new psychologist. My last one got too expensive after I switched to Medicare, and this new woman will work on a sliding scale, with my mother willing to help.
brightlotusmoon: (Asha)
Um. So.
Last night I had a small seizure - awake but barely conscious. And the baby migraine kept pulsating. I forced myself to sleep. I woke up at noon with the migraine even worse. And the thunder rolled.

The seizure itself was pitch black. It had me moving through a completely moon-less woods, holding the hands of two people - Alicia and Ananta - and stumbling over things, which transferred agony into my skull. I was shaking. They kept saying, Just a little more, just ahead, it's a rose light, you'll recognize it...
And there it was like a rosy mist with light inside. At the last minute, Ananta picked me up and carried me directly into the mist. That is all I remember.

I wound up staying in bed for an hour, because Calliope kept vocalizing, nuzzling and bunting me, and settling in to nurse on my shirt. I know she loves me deeply, but I must ask the cat behaviorists here what it means to be truly, actually loved by your cat, because Calliope will not go to bed until I go to bed, Calliope will follow me around the house, Calliope will check on me just to make sure I exist.

After I fell out of bed and took my medications (baclofen, tramadol, codeine, coffee, omega-3, MSM, L-Tyrosine, probiotics, inositol, shilajit, ashwagandha, noni, mangosteen, devil's claw, magnesium oil massaged into the severe stiff burning screaming lower back).

I am not fooled. I may be upright, typing. But I am having moments in which I need to breathe, collapse in the chair and massage my head. This will be a very interesting afternoon. Luckily, I have DVRed Archer, Bitten, Being Human, Lost Girl, etc. Just in case.
Is it sad that I want Ray and Lana to be my nursemaids?
brightlotusmoon: (Default)
History hurts. Repeating a painful history still hurts.

I will sound very defeatist, pessimistic, exhausted, fed up, lost, and afraid to fight: I don't know if I can prevent my friends from using slurs and pejorative phrases that clearly insult disabled people. I know I can respond to "Oh get over it, it's no big deal, stop getting your panties in a twist, etc" with "Fuck off, you know I've asked you to stop." However, I can't fight. I cannot snarl every single time I am with a group and someone says that something (not a person) "is so ret***ed." Because I myself will feel like I am losing battle after battle and I am so tired. The people in my life, especially the assholes with hearts of gold who know they are assholes with hearts of gold, are willing to die and kill for me. I will defend them forever. I realize not everyone will respect my choice of family among these friends. But you know what, these friends know me, understand me, respect me, love me... even as their humor and sarcasm on my Facebook translates to what seems like ugliness. I watch "Archer" every week, after all. And as long as I have that battle axe gifted to me by my favorite asshole with a heart of gold, I can make fun of myself.
I don't know why I wrote all this. I dont know what my brain wants lately.


Posted via m.livejournal.com.

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)
Day after seizure with migraine:
Still working through recovery from seizure and migraine.
Allergies and fibromyalgia flare not helping.
I shall go read books and watch cartoons!
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)
I really must post more here.
I've been in a depressive episode, one that now includes a postitctal state.
Feeling truly alive and worthy can be difficult.
Bah.
I'll work through it and past it. I always do.
Everything hurts. Pain is concentrated in my skull, my face, and my neck. It is hard to lie still with my eyes closed.
Luckily I have many different treatments, yay.
Maybe tomorrow I can really start the second novel as more than outlines. I still need a title. The title "Glass Lotus" is still among the top choices. I still need to research paranormal contemporary nontraditional urban fantasy novels featuring LGBTQU characters with disabilities and superpowers. (Good luck, Jo.)
At least I am eating.
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 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)
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)
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

March 2015

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