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)
https://plus.google.com/100400881094218310019/posts/2QhbpM1cg9c

So, that's the link to all the photos they took during my MRI. You know, from here:
http://brightlotusmoon.livejournal.com/1673757.html
http://brightlotusmoon.livejournal.com/1672704.html

I'm trying to still figure out where my neurological seizures happen, since I have problems in the corpus callosum but there's no mesial damage, so. Time to research neuroscience. And then talk to my neuroscientist.
brightlotusmoon: (Asha)
FYI! Got my brain CD. The neurologist couldn't find anything out of the ordinary that was not already abnormal, etc. So I went and got the CD with my MRI and brought it home, and Adam turned it into a Power Point presentation. I wish so much I knew what to really see, that I could see with a neuroscientist's eyes. I can see my butterfly's broken wings. And the thinning of the corpus callosum.

Let me see if I can copy from the paperwork...

Abnormal dilation of both lateral ventricles with an asymmetric area of dilation along the mid body of the right lateral ventricle. Waviness and distortion of the lateral ventricular margins bilaterally. Dilatation of the third ventricle. Partial absence of the septum pellucidum. Generalized thinning of the corpus callosum which appears grossly intact. These findings likely represent developmental anomalies of the brain; however, these findings could also represent the sequela of in utero ischemia and periventricular leukomalacia. There is no evidence of focal abnormality of the temporal lobes.

Ahh, science. *basking in words*

Now, however... I am still irritated about the lack of EEG response. They tell me I was born with epilepsy - and there is the physical evidence in my brain creature right there. However, I feel... I suppose silly is the word. This may not be an ordinary kind of epilepsy where electrical activity shows up on EEGs. But... but that doesn't necessarily mean anything. I guess. I just sometimes wonder, that's all.
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)
This afternoon saw my session of physical therapy until I see the physiatrist next month. For now, all the alignment exercises have done very well. I will do them for the rest of my life. They're not only extremely gentle but extremely soothing. I could probably use them to combat anxiety a little. This pleases me.

I've been packing my laptop bag and a toiletries bag. I'll pack a change of clothes. Ten hours with electrodes on my head will be fascinating. Note to self: bring the leopard plushie. Maybe the dolphin too.

When I spoke to the technician from the EEG unit a little bit ago, I was told to get less than my normal sleep time, which is generally nine to twelve hours. I'll aim for six to seven.
I was told to come in tired, so that my brain would be more susceptible. This actually matched the stuff my neurologist told me.

It is very interesting to note that an online fight rarely triggers my epilepsy. It turns out that if the fight comes out of nowhere and makes no sense, I become bored and stop paying attention until something of interest happens.
Maybe I should wander into some random forum filled with concern trolls who are insisting that groups of invisible people are on their sides. Those sometimes make me twitch.

But, since my main triggers are fatigue, emotional excitement bad or good, fear, and probably other similar things, I might decide to watch a scary movie and not get enough sleep and maybe go online and read about, I dunno, for example... trolls treating autistics like not-people. That's good for some rage anxiety.

I I just finished Gaiman's The Ocean At The End Of The Lane. It was surrealist and psychological enough to guarantee interesting dreams. I may bring it to the medical building to read again along with the other books.

I think the most recent seizure was at least two days ago.That might explain why I feel bored, puzzled, and amused in a lab study way about stuff going on around Facebook and comic forums and other bloggery type websites I follow (I don't even touch Twitter).

Currently, I am feeling like an alien watching humans throwing random petty tantrums for no actual reasons. I guess they weren't getting the results they wanted.

Keep on being fascinating, internet.
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)
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: (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)
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)
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?

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brightlotusmoon

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