The Return To Innocence

And here is the thing about mild spastic ataxic hemiplegic cerebral palsy that I don't normally talk about, since it is kind of horrifying.
See, earlier in the evening, I'd had a second small seizure that caused my entire body to tense up, spasm, flail, and twist. It was over in seconds... but it had triggered a spastic hemiplegia "flare" that turned my entire left side into a "ghost" - I could barely feel anything on that side, I couldn't move my arm or leg at all, and I had to actively speak to myself to give orders. "Brain, open the left hand. Brain, straighten the left leg." My face was affected, my eye was affected, the left side of my mouth was affected. I could speak, but with a mild slur. The muscles on the left side of my face would twitch and then clench before barely relaxing. Adam massaged me and held my hands and comforted me while I let it all happen. We conversed about the general problems in my specific case of left side spastic ataxic hypertonia hemiparetic mild hemiplegic cerebral palsy - since each patient is much different. The concept of "When it stops" turned into "If it stops" - which was part of the terror. It did stop, during the "Darmok" episode of Star Trek The Next Generation. I finally forced myself to limp upstairs and take muscle relaxants. I am only just now able to stretch, three hours later.
I know there maybe be people with cerebral palsy who will want to "compare" their symptoms and sensations and lack of sensation, and there may be people who care for people with cerebral palsy who will want to "compare" their patients' symptoms and sensations and lack of sensations. But I don't really want to hear that right now. This is just something I needed to get out. I don't know many people without cerebral palsy can really really get it. The exquisite agony as sensation slowly returns, and then the ecstatic joy of actual feeling and movement. I don't know how similar it is to any other sort of -plegic condition. I know nothing except my own experiences. But see, if you are ever with me, and my body goes through a serious of spastic twitching flailing movements, be prepared for my left side to drag, to barely move, to generally be so tense and clenched that my muscles are like stone. Fibromyalgia flares may certainly follow. Such as the one I am in right now.
I only write this to recall, recollect, understand my own self and what I go through in these moments, these "flare" of a sort. In every "regular" moment, every day, all day, my left side is tense, clenched, prone to small spasms. But during "flares" triggered by epilepsy, fatigue, physical excitement, emotional excitement... those moments are scary and filled with strange creepy moments. I know other sufferers have such moments happen. I know each sufferer is different no matter how similar the symptoms are. If I don't write down what I personally experience in my own body, I may not remember for next time.
This, in fact, may be a first entry in a sort of "memory journal" if that is what it takes to recall and recognize and understand myself.

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.

So, I'm not going to fully describe the four distinct simple partial seizures, the Raynaud's flare, the lumbar and sciatic spasms that literally crippled me and put me on the floor writhing, the chondromalacia patella flare that was just purely evil, the spastic hemiplegic flare that left my entire left side feeling ghost-like, the fibromyalgia burning that I compared to nerves hooked on heated barbed wire and connective tissues touching a bonfire - skin included - the sinus and jaw pain caused by my generally being irritated, the depression, the twitching anxiety.
Details are pointless. But since I am a disability advocate, I will leave this open for questions and stories and understandings and commiserations and complaints, since a huge percentage of my Friends List is disabled in some way.

My female cats are taking turns jumping on my lap and nuzzling me, occasionally preventing me from getting up. Obviously I could remove the cats from my lap at will, but I don't want to, and also they kind of dig in because they really want to hang out. Fine by me.

Although, if anyone actually wants details, please ask. You never know.

http://truth-out.org/opinion/item/14466-i-am-not-a-camel-but-i-do-have-epilepsy

What she said:
And then there's the other, less dramatic stuff - the "abnormal activity" buzzing around my brain on "normal" days. Since I had my first seizure, that "me" who floated outside myself and saw a separate version of reality has never really gone away. When I'm not concentrating hard on something - an engaging conversation, a good book, a challenging project, my wonderful wedding, my fast-paced job, an adorable dog, an extremely delicious sandwich - I'm sometimes flooded with a feeling of "derealization." The world around me appears like a dream, or a movie, or a secondhand vision: a matrix inside a matrix. Sometimes, the world wiggles. At times, I think I'm seeing the fundamental unreality of things as they really are, as in the Hindu concept of "Maya," in which the physical world is an illusion or projection that must be seen through in order to achieve enlightenment.... And at times, I just want to go to bed.
***
I should add:
People have asked me, "So, does temporal lobe epilepsy affect you when you are not having seizures?" And the answer is a resounding "Oh, yes!" Seizures are just one type of symptom, after all. The brain with epilepsy is routinely being shifted in and out of fantastic and fantastical neural and neurological wormholes and dimensions, in a strange way. There is always a buzzing, a shifting sense of reality. Colors, smells, sounds, shapes, sensations, flavors, textures. Particularly for epileptics with other disabilities or comorbid disabilities, like cerebral palsy or fibromyalgia or nerve damages.
I rarely tell people about the everyday life of my epilepsy, because the common reactions are often variations of "Well, maybe you should change your medication or add a medication or do this or do that because that doesn't seem normal!" or "Oh, no, does this mean something is wrong with you?" Sigh.
So, I have this damaged brain. Stuff happens in my brain. It is my brain and nobody else's. I talk to my doctors and specialists so often that they know me just by my voice on the phone. If something goes wrong or if something doesn't feel right, I take action. I don't say anything much to people who are not medical specialists or medical personnel, because, you know, reactions. But yes. Yes, I am constantly, consistently, and chronically affected by epilepsy. My temporal lobes, my amygdala, my cerebral cortex, my hippocampus, and the various neurons all involved are affected; and thus my perceptions, orientations, sensations, emotions, neurological functions, and memories are affected. When I seem to be drifting in and out of reality, I kind of am. It's not painful, it doesn't mean something is wrong, it certainly does not mean that my medicine needs changing. It's just my brain. Mine, and nobody else's. I cannot be compared to other epileptic people, and other epileptic people cannot be compared to me. But we all have things in common: Our brains are totally weird, fantastical, creative, artistic, and awesome. Most of the time. The Hindu concept of Maya does indeed apply. Also, as many people have told me, some people pay good money to feel the way I feel. *shrug*
It's just my brain.

STOP IT, EPILEPSY AND ANXIETY AND CEREBRAL PALSY. STOP. ENOUGH. I HATE YOU.

Thank fuck for typing and keeping digital records because I cannot speak right now. Everything is in full hemiplegic and hypertonic spasm, every sound coming out of my mouth is a wounded animal sound, every thought in my mind is of things that are not realistic, every breath is cutting my lungs. I am all Alice right now. I am full of glass and mirrors that are twisting and warping and melting, I can't run anywhere without slamming into ragged cave walls and broken glass, I want to sob and scream for Alicia and Serena, my personal brain's special coping mechanisms in human form, and I know they are here, I just need to reach out and take their hands. They live inside me, I made them, I need to apply them or I will tear myself apart screaming.

I am so fucking thankful for all my medications that I can't even explain. They hold back the tide. People keep insisting that they must not work if I still have symptoms and episodes. But they hold back the tide. They push back the worst of the symptoms, the biggest wildest episodes. They keep me out of hospitals. They keep me alive and functioning. They help me soothe my own self more easily. Pharmaceuticals and supplements, I love you all in your own way.

Also, it took twenty minutes to type all that. Oh, spasms and seizures, my childhood friends. Not even imaginary.

I think that if someone were to call me, I would have to scramble for a good mask, because my voice is barely human but my brain is at least.

So, I have been having tiny euphoric seizures throughout the week. They actually feel good. That is what I must watch out for; that particular out of body sense that floods my brain with wild wonderful electricity and something almost beautiful and fantastical. It is very Alice. I have filled myself with lemonade, red meat, cheese, cheesecake, electrolyte liquids, coffee, caffeine, painkillers, anxiety medications, muscle relaxants. It has all been helping, truly.

Regarding "Doctor Who": I love Clara already. Whoever she is, however many of her there are, wherever she comes from... I am already fascinated, amused, and amazed. Also, Matt Smith is becoming even more awesome.

I am exhausted, mildly depressed, out of my head, and not really wanting to socialize much, not until the tiny party for New Years, with a few friends at home. It will be lovely enough.

Had seizure. Kind of long. Simple Partial to Complex Partial. All four types: Autonomic, Motor, Sensory, Psychic.
Very very post ictal.
Must rewire and re-conjugate brain.
Dysphasia making all things mixed up.
Typing much better than speaking.
The world is not the world I know. Reality is moving up down sideways. I want to laugh but my voice wants to cry.
Rose kitten on my lap nipping my face, licking, purring purring loud loud, nipping hugging nipping, love mama love mama mama come back mama love you mama purr purr.
Brain stuttering. I can deeply feel neurons and wiring lighting up all blue and wild and burning. Brain is funny, throwing itself against electrified padded walls wanting to get out and be normal.
I will be fine. I need a few moments.
Cat love. Cat love always helps forever.
Twitch twitch.

Typing with two fingers. Time has not much meaning now. Reality will settle down soon, I can feel it...

http://www.ehow.com/list_6020170_signs-symptoms-focal-seizure.html
http://emedicine.medscape.com/article/1184384-clinical
http://www.healthcommunities.com/epilepsy-seizures/symptoms.shtml

Also, everything still hurts so hideously that the pain has still gone from "ten" to "indescribable" to "Lovecraftian." And also I recently had a small seizure that involved some sort of sobbing similar to the cries of a wounded young kitten. I wish I remembered more, but there were only colors full of dark, and more pain, and there was howling in the abyss, and there was a woman holding me and singing until I came awake. Probably my inner pain guide creation, Serena; she's good like that.

I really must sleep.
I really must stop hurting first.
One will happen before the other, of course. Eventually.

Other things:
On our way back to Gaithersburg, the car broke down eighty miles from home, in Aberdeen Maryland near Bel Air. Adam managed to coast to the shoulder on I-95 and guessed that the transmission or possibly the torque converter had died or failed. After several desperate calls, we wound up calling Triple A, signing up, and waiting for a tow truck. The plan was to get towed to the local mechanic, have Billy meet us there with the SUV, and then pack everything into the SUV so we could get it all home. It all went well. Adam has tomorrow and Monday and Tuesday off, thankfully. The mechanic, Bill, won't be available until Monday, which means that Adam may need to borrow a vehicle from his boss for a few days, unless Bill can fix the problem quickly. We can pay for a new transmission if needed, and we can even try to buy another used car if it desperately comes to that, but Cloud is a such good car - a 1999 Ford Taurus station wagon with very few miles - and we don't want to give her up. Come Monday, we will learn her fate, and hopefully she will be fine. If not... sigh.

Other than that? My week was amazing. Spending all that time with my parents in their house full of art, made of art, breathing art, soaking up art... Dad gave us two of his older paintings from his 1970s surrealist period, plus a seahorse and oyster shell with a real pearl carved into dark slate. Everything was an extraordinary gift. My family's love is an extraordinary gift.

I've spoken before about the various fascinating kinds of partial seizures, but in case anyone forgot, here is a good primer:
http://www.ehow.com/list_6020170_signs-symptoms-focal-seizure.html

I've experienced all of these, often all at once. Last night was a good example. In fact, it swelled up to such a huge, painful, highly disturbing and creepy seizure that I felt myself grab my hair and yank it, and heard myself shouting as loudly as I could, almost screaming, trying to force the seizure out of me.

I've sometimes said that I have been able to use powerful meditative techniques to stop a seizure in its tracks, but admittedly that really only worked on simple partial seizures, also known as warning seizures and auras. Once I'm in a complex partial seizure, I need to ride it out or face its wrath. Thankfully, these seizures often don't last long. Anywhere from under a minute to just under five minutes it is powerful. Anything afterwards is the immediate postictal state that may seem like an extension.

And so, when last night's seizure struck randomly amusingly enough just as I was posting that above link on Facebook, I realized that was losing the outside world too quickly to do anything but sit back and breathe and just let myself be thrown and lost into the psychic world of malfuctioning neurons. I saw the faces of Alicia, my psychic seizure guide, flash before me, and in my mind I grabbed her hand, closed my eyes, and let myself fall.

I was both in and out of my body, so I could feel everything I was doing to myself but I had no control. The world of all my senses was overlaid with the world of all my malfunctioning senses: A beautiful garden leading to a beautiful forest from another world, that Wonderland world that looks like an acid trip on an acid trip. Alicia was guiding me gently through, since the "portal" to my looking glass at the end of the seizure was always somewhere beyond the forest, in various places with various seizures. Without Alicia my mind would be lost, which was exactly why my mind created her and Serena to help me.

At my looking glass portal, Serena waited on the other side to take me and hold me until the pains and spasms calmed. Serena's place always looks like the gleaming bedroom of an old haunted mansion, with dark red velvet and and silk and gold trim on curtains and rugs and beds and chairs. It is always phenomenally comfortable and calming in that room, hence why my mind created it. Serena helped me to the king sized bed, low enough for me to simply lie down without climbing on. I lay there while she pressed a compress to my head, while she massaged acupressure points and gave me a soft scalp massage, humming all the way. Her nails were painted wine red like her lips, her black hair loose to her waist, her outfit a red and gold silk top to match the room, with dark blue jeans and dark green socks to match her eyes. I always wonder if my mind created her as an infinitely wealthy trust fund baby surrounded by comfort and security and luxury and artistry, just as Alicia was created as a forest living polymath martial artist at home in a magic cottage. Parts of me that I long for.
Serena began singing in a soprano voice, so I closed my eyes. When I opened them, I was physically back and the seizure had left me exhausted and feeling ill.

I went to bed and did not wake up until noon today. I don't remember my dreams at all. Probably a good thing. Medicines have been working well so far; time for another Soma. My appetite is still so poor that I am still eating the same bowl of yogurt from two hours ago. There is plenty of food, I just don't really want it. I will most likely heat up a pizza just to get something bigger into my stomach. I need this to not scare me, because memories are coming back, and the last thing I want is to feel that frightening comfort in hunger and restriction. But having multiple disabilities is exhausting, and I don't think that depression episode is really over.
Today is a serious resting day.