The Return To Innocence

Okay, first thing:

Bad day bad day. Brain misfires, pain everywhere, spasticity, OCD episode, distractions, hypersensitivities, gut issues. I will say, however, that probiotics and omega-3 supplements of specific kinds are actually doing good things to my brain. It's not really evident in any of my outward behavior, but I can absolutely feel something going on.
Dear neuroweird science students: Is impulse control mainly frontal lobe? I have a Thinky Thing I'm thinking about, but I need medical professionals and medical students to confirm. I know of Things that can help me personally and specifically, but I need to make sure I'll be doing it properly. Also, this means staring slackjawed at my MRI photos and calling my neurologist.

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Unrelated, copied from Facebook.

Well, this person said what I was thinking.
https://www.facebook.com/thautcast/posts/830987393625539?fref=nf&pnref=story
My personal need for disability labels is personal. My need to be able to relate to people via stories and fiction. So many people have told me things like how they "don't see disability" (sorry, I have to laugh at that) and don't see labels... and that's cool. Really. That's fine. But that is not how I see the world and that is not how I view myself. Being able to say, "Yeah, I'm disabled, and these are the medical issues I have" is indescribably relieving, even powerful; it gives me a power to choose and know my own self in a very intense way that I honestly can't describe.
My disabilities are not really eccentricities or special powers; they are painful and they will get worse as I age - and I'm talking about the comorbid, co-occuring, associated syndromes and symptoms. Eccentricity? Gift? Er. Yaaa...aay? I mean, sometimes my seizures cause wicked euphoric hallucinations when I close my eyes? That's... fun? And I suppose having severe anxiety and ADHD-PI and OCD and SPD could be my mind working out itself and it's environmental relationship?
So, um, so far I'm not seeing eccentric quirks and gifts. But I don't see myself the way someone who thinks that way would see me. I've met disabled people who say they aren't disabled, and a part of me marvels at the cognitive dissonance, a part of me wonders if they're completely rejecting the medical model of disability, a part of me wonders what they do when symptoms and syndromes kick them around and act truly disabling. I say nothing to them because I know it's their thing. The only time I'd want to try to sway them is if they want to spread their belief that disabilities are not disabilities, because that can become harmful and dangerous to the social model. As Stella Young said, no amount of smiling at a staircase will turn it into a ramp. So, as much as someone refuses the disability label, I really need them to consider it beyond their beliefs.

I'm just saying. We all have very different ways of talking about, discussing, portraying, coding, and having disabilities. I'm just glad that right now, I am able to very very openly discuss mine the way I want without being punished for it. And so should others, particularly those who think differently than I do. That's what makes discussion.

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Also? I find it funny that so many people are like "OMG aliens, what if aliens come here, wouldn't it be amazing, we should learn alien languages, I bet they don't even communicate like we do, so we should be open to new communicative experiences!"
And then they're all like "WTF autistic people you're so weird we don't want you weirding us up we don't like you why can't you be normal like us!"
And I'm all, "*throws hands up* WHAT DO YOU WANT FROM US, YOU JERKS!"

***

I am having A LOT of thinky thoughts on why people reject the term disability in favor of eccentricity, quirk, gift. Not just abled folk but people with mental illness like bipolar or schizophrenia. I am still determined to wrap my mind around visibly physically disabled folk, like with cerebral palsy, who say they aren't disabled. It fascinates me because that view is so so alien to me. As long as the conversation is civil if course.

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http://thebodyisnotanapology.com/magazine/just-try/
http://webcast.ucdavis.edu/llnd/467b5ad7?channelId=0abfe11894d742c7b159a535058c09ce&channelListId&mediaId=29f030d8c24a4b718c1c2936187278b8

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I don't do Twitter. But lots of my friends do. Fuck Autism Speaks. I'm not pushing anyone to do the #Notmssing thing. But I do believe it is vital to send Autism Speaks the crucial message that autism is not a "thieving disease to be eradicated" because IT IS OUR BRAINS. WE are autism. We are born with a different operating system that doesn't really comply with the standard. People laugh about meeting alien cultures with other ways of communication, and yet we are right here, a metaphor, and they not only turn away from us, they actively seek to erase us. So. No. Bad Autism Speaks. No. Stop it. Nobody is missing. We are right here. We are staring right at you, angry and sad. We have been here all along. We have been speaking out all along. You just haven't listened.

Also, hells no we're not ready to meet any alien cultures. Not if we keep trying to erase members of our own.



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http://webcast.ucdavis.edu/llnd/467b5ad7?channelId=0abfe11894d742c7b159a535058c09ce&channelListId&mediaId=29f030d8c24a4b718c1c2936187278b8
(Nick Walker is awesome)
Autism as a neurocognitive variance. Indeed. It's a disability because it hinders how we interact with life all the time. But there is nothing wrong with us. It's just a rewiring of our brains before birth or at birth.
Like, with me. I was born a fetus. I was a 26-week-old fetus when I was "officially born". My developing brain didn't have time to pick and choose. It just grabbed whatever it could, crammed stuff in, got a random shiny new operating system that was able to work around all the dead white matter, and figured it was good enough because I still needed to finish growing into being a baby, you know? Like, "Fuck it, we'll deal with this brain damage later, just keep the body going, okay? Move it move it move it avoid the gaps in the dead parts, come over this way, this construction project is gonna take a few more months than planned, so we don't have time for sick days, guys. What's that OS? It looks kind of tangled. That's fine, it's shiny, build it in, hook it up, whatever. Hey! I told you guys to avoid the dead zones! Awww daaamn, somebody get a new team over there please? No workman's comp here, this is preterm, okay? Just go go go..."
And that's where I got my brain.
So, dear allistic and neuro-typical assholes who question my right to exist, who insist that kids like me are missing, stolen, lost, forever silent: Fuck off. My brain worked hard to be itself, and just because my OS isn't yours doesn't make me lesser.

So! I did a thing a while back. I didn't tell anyone. Anyone at all. And now it is time to come clean, because it's been long enough that I think I can finally shoot down the pushers.

I did a second gluten-free trial, lasting just under one month. I spoke to all three doctors and specialists, who were okay with it. Although I shall quote my primary physician, Dr Carolyn, who has treated me since 2003: "I don't see why it's really necessary, though. You've never had gluten sensitivity, let alone celiac. But if it will help you psychologically, then sure. Let me know." And to quote my neurologist, Dr Debbie: "Why are you doing this to convince other people? I mean, I'm genuinely amused. You don't need to cut out gluten for health reasons, anyway." All I could do was shrug and say, "I guess to prove a point to the health-pushers?" She said I had a point, since that was irritating, to be pushed at.

The results were...

Wait for it...

Nothing.
Absolutely nothing.
There was no reduction in chronic pain, fatigue, inflammation, or malaise symptoms of any kind. I did not feel more energized nor clear-headed. My life did not change, not even a flicker.

Now. For the past several weeks, I've been verbally assaulted across the board by people who just want me to feel better - by using blatant, callous emotional manipulation to force me to comply.
The most popular one so far has been "Well, what if you were dying? What if you found out that gluten would kill you and that by going gluten-free you could save your life?" See, okay, that is a fascinating thing right now. That is one of the most manipulative, passive-aggressive, hard-hitting, one-sided forms of coercion ever. The speaker is hoping to catch the listener in a corner, with no choice but to agree. And see, they're correct there. Obviously if I were in such a scenario, of course I would go gluten-free. But the catch is that I am not dying. I am not sick. Thus, no desire nor need to go gluten-free. Not unless that life or death scenario occurs!
Following up that particular attack, we then have this, "Well, then, don't you think going gluten-free would at least reduce symptoms and pain?" Which ties into the first, of course, and is subtle enough to seem harmless and reasonable. And... no. Because gluten causes problems if one is reacting to gluten. Which I wasn't. "But I read this book written by this doctor that said that for everybody, gluten can cause overall body inflammation and pain!" For everybody, really? All seven billion humans, with the exact same medical issue. One would assume the CDC, FDA, and various world governments would be all on top of that like roaches on dog food. Plus, I listened to a conversation said by this doctor, who is personally treating me, that said that I didn't need to restrict my diet like that. But you're right, book-writing doctors would know better.
Now, the big guns. This attack is my favorite, because it strikes right at the heart, it tries to destroy the option of choice: "So, I guess you'd prefer a life of pain over fewer symptoms." It can be said in multiple ways, but the core is always a smug, smarmy, morally superior, I've got you now rhetoric. It's a tough one to counter. If you say yes, you seem as though you just don't ever want to really help yourself after all. If you say no, well, why haven't you taken their advice? You see the attempt at emotional superiority and twisted logic? At this point, you can tell they are grasping at straws. They've seized on an idea, fixated, and found themselves unable to let go. I get that. And they most like don't even realize that what they say to you is painful or upsetting. They only want to help. They care deeply enough. Obviously, when you love someone, you want to see them happy, healthful, pain-free. When they are in chronic pain, when they hurt every day, you hunt frantically for ideas about treatments. Even when they have doctors and treatments, you just want to do something, anything, because you can't stand to just stand by. They're hurting. Why can't you help? You feel helpless.
But emotional manipulation and verbal attack is a very ugly way to go about helping. They are more likely to stop talking to you. In fact, with most of these people, I've started not talking about my symptoms. Which is funny, because these are my support networks. These are support groups, people who are willing to help. Except for the ones who don't know how to help, the ones who don't have chronic illnesses like mine, who can only see the experiences vicariously. Intellectually, they may understand that it is inappropriate to push, but it feels so right emotionally that they can't help it. And I've been there. I've done that.
The problem here is that if people actually cared about your pain, your chronic illness, they wouldn't apply these manipulations; they are generally more concerned with winning you over and being right. Nobody truly means to be an asshole in a situation like this.
However, in the end, that gut-sensation of being right, of knowing what might work, is overwhelming and almost brainwashing. It's almost cult-ish. I'll call then health preachers. This isn't about just gluten-free. This is about every dietary alteration ever suggested. This is about every medical treatment involving home treatments like food and exercise, meditation and yoga, supplements and massage, etcetera. I haven't even gotten to pharmacological medicine and holistic medicine yet. Or the people who deny psychiatric illnesses, who think psychiatry is fraudulent, who believe firmly that clinical depression isn't real and is literally psychological, delusional. Frustrating, isn't it.

So, anyway. My Plan. I went gluten-free for just under a month. I kept notes. I was alone, because Adam was away on business, so I just cooked for myself and didn't touch anything with gluten. I was hungry and bored. I mean, the food was delicious. There was a lot of quinoa and lentils and sprouts and cheese and meats and snow peas and carrots and apples. I ate a lot of steak. But I just felt annoyed.
My doctors were extremely amused and not at all surprised when I told them the results.
Seriously. Three separate doctors. All saying the same thing. I mean, at this point, if I were to tell Dr Carolyn to refer me to a blood test just for the hell of it, she would quirk an eyebrow at me and ask who was giving me the money for the test (I don't know if Medicare covers those), and we would laugh.
But I didn't tell anyone I knew. Not for the whole duration. Here and there, I casually mentioned that I'd done gluten-free trials without any changes, I casually mentioned that I didn't need to cut out gluten and that there were plenty of other ways I was already mitigating symptoms. I stopped updating my support groups. I just said that I was doing well on my medications and therapies, and when the weather got bad I would flare up terribly and kept treating myself. I mean, even if all my symptoms vanished, I would still not be rid of pain, because of the cerebral palsy. Which 1. is never going away and 2. is getting worse as I age, which cannot be stopped or relieved. Which people rarely realize, because nobody thinks about the crip adults.
So, yay, you, my LJ friends, get to hear it first. I went gluten-free and it didn't do shit for me! Yaay, that was pointless! Let's dance!
It was fascinating. During my trial, I was reading entries on my friends list about people cutting out gluten and realizing that their lives were changing for the better, that they were celiac after all, or intolerant, and that going gluten-free made all the difference and they could love food again, woooo! I was so happy for them I almost cried. It was amazing, reading about their joy and euphoria and ecstasy. Food, they cried! Food is wonderful again! And I nodded, and grinned, and focused on myself and how my gluten-free test trial was just like any other day, except boring.
And I put up with preachers, and pushers, and well-meaning manipulations. And I said nothing. It did hurt, being attacked like that. I sobbed and snarled and surrounded myself with friends who knew the powerful irritation of being shoved around by gluten-free pushers. I kept going. I took double the Klonopin. Days and weeks passed. I stopped the trial. I ate grains and wheat again, slowly, lovingly, with savor.

Today, I was recommended a wonderful book called "The Gentle Art Of Verbal Self-Defense" by Suzanne Haden Elgin. I've gotten a sample of a few chapters, and I'm so hooked that I'll be purchasing the updated version as soon as I have money to buy it. I'm lucky that I've been able to recognize Verbal Attack Patterns recently, but the book will teach me to escape as well as use communication to resolve. I need that. I need to learn peaceful communication getting to the root of the problem without hostile interaction and confrontation, without arguing over semantics. I like to hyperbolize. In fact, a handful of friends and I like to snark at, hyperbolize, and satirize the beliefs of health preachers, like those who firmly believe that gluten-free diets could help everyone who doesn't need them, the way that accepting Jesus will get people to Heaven so the preachers can see them after death and hang out with them in a conforming afterlife. See why this may not work? See why this can be more about the preachers than the listeners?
It is nearly impossible to fight a very calm, gentle person. I need to learn that art of fighting with calm. I need to learn to not be enraged and screamingly upset and insulted whenever anyone tries to manipulate my emotions. I need to learn to break my own cycle of verbal hostility, which will help me handle those manipulations disguised as helpfulness.

Other thing I loathe: Being told that having a mild version of a disability doesn't count. I already discussed cerebral palsy and aging with the chronic pain caused by spastic hypertonia. And they don't back off. No matter how many times you patiently explain anything. Now that is where I really, really need to learn gentle verbal self-defense tactics. Because oh my fucking gods I want to punch them full of holes.

Ahh, humanity. Fun!

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.

I had so much amazing sushi it was amazing. I watched with amusement as one friend requested lobster miso and got, literally, a bowl of miso with a lobster claw in it... in the shell, and no tools save for chopsticks. I wanted more sushi, and they let me have more sushi because I fucking could, oh my gods, even the waitress was impressed.
I walked around a shopping area at night with friends and I didn't have a cane and it was all fine, and I socialized easily with four good good people, and when I woke up in the late morning, I hurt so badly that the only way I could get out of bed and walk anywhere, say, to the bathroom, was to put myself back into a half-asleep state.

And then... then, I got asked to weigh in on a discussion about how "our organic bodies must learn to heal themselves without medicine blah blah blah" and I was too tired to give a smackdown, so I just warned that HOLY NAKED CATS CHRONIC ILLNESS AND DISABILITY DOESN'T WORK LIKE THAT YOU ETERNALLY FLOATING-HEAD HIPPIE WANNABE. Never tell someone who needs certain medications to function to just quit those medications, or you will have to deal with some very, very irritated cripples.
Like, HI, this drug here, synthetically derived from that plant over there, is saving my life, and fuck you. Yes, yes, the medical community likes to "push" drugs and all, but sometimes those drugs keep people alive, so seriously shut your rainbow-dribbling mouth.
I have spent over a decade writing essays and blog posts about this, starting from that floating head holistic hippie phase of Only Supplements and Essential Oils and Meditation, to Okay This Requires a Chemical Drug So I Don't Die But Can I Still Take The Supplements to Goddammit I'm Just Going To Balance Holistics, Botanicals, and Pharmaceuticals forever.
And the next person to use the words "poison" and "Harmacy" in conversation with me will be threatened with getting hidden completely if not blocked from my forum feeds. Because I really am a serious holistic and scientific advocate for various healing plants and botanicals. I am a shaman in training. But chemicals come from various places. And sometimes, the chemicals extracted by scientists have a better effect than the pure volatile chemicals.
You think side effects from FDA drugs are bad? Eat a whole plant and spend a few hours writhing in hallucinatory agony. And GUESS WHAT: some people never even get bad side effects. Trileptal. Zoloft. Baclofen. Soma. Tramadol. Codeine. Klonopin. Guess what? I'M NOT A FUCKING ZOMBIE. Guess what else? I AM BETTER THAN I HAVE BEEN. So you know what? Float on. The cloud are gorgeous up there.
But my body cannot organically heal itself, sorry. If you're on of those people who like to say, "I'm not against pharmaceutical drugs at all, but have you ever considered just letting your body work on itself naturally?" You will be met with raucous laughter that would make the Joker question my sanity.
I have been dealing with this since my early twenties. I'm gone through the ENTIRE gamut of medicines after being raised literally on vitamins and homeopathy and various therapies and acupuncture. I will not claim to be an expert. But I've had life experience.
So hey, if you're going to cheerfully toss out a casual, callous thought about how someone shouldn't take a pill anymore and see what happens, you really don't know. You don't know. And this is why I try to go out there and help educate, advocate and activist. Because if I don't, people will remain head-floating.
I was once head-floating, and it was a good high while it lasted. This is why many of my friends are scientists, medical doctors, medical students, researchers, etc. I ask a lot of questions. Because I never want to be that head-floaty again.

Anyway. I applied a cream with special oils to my chakra points on my feet, palms, and ears, and my forehead. I took my "harmaceutical" drugs. I stretched. I did acupressure. I meditated. I did my personal compensated form of qigong (of which yoga is only a small part, so don't bother), I recited various phrases to relax myself and let my darker emotions drain away.

In conclusion: If I specifically as for opinions about something incredibly specific, I ask that people stick to that topic. Unlike my friend's post, which was derailed by a hippie wannabe who happily invalidated everyone by insisting that all we need is our own organic body to be healed. Sorry, friend. I hope that drug is going to work well for you! I've never tried it, as I haven't needed it. But I'm happy to help with research.

Anyway. Sushi makes things better. Lots and lots of sushi. Lots. Sushi.

My medically knowledgeable best friend was right about that daily extra Klonopin. Hello, sudden sobbing breakdown and potential nightmare about my cat dying all over again.
I know she is still here. She's just not... here.
Oh, Rose-kitten. I miss your sleepy weight on my torso.
...
Oh, now this is fascinating.
I took that second Klonopin while crying wildly. Across the hall, in the other room, Calliope started meowing loudly. I went in despite wanting to just curl back up in bed. She immediately rubbed against my legs. When I sat on the couch, she nuzzled and kneaded me, then jumped down, rolled on the floor, and offered her belly. I immediately, instantly, powerfully, got a sense of "I am here to give you comfort. Here is my love, if you want it. Touch me. Love me. If you want. I am here." And as soon as I touched her face and she purred so loud my hand vibrated, I felt so calm and tranquil it was like a river becoming still after a rock had been tossed in. Mind, the Klonopin had not had a chance to work yet. But Calliope's purring did... something. I just breathed. I breathed and I stroked her and I ran my fingers through her unshaved belly fur, and she nibbled my fingers and rubbed her cheeks on them. She hadn't instantly jumped on me or rubbed my face, but she had quietly and simply offered comfort. And as I made sounds of pain and sadness, her soft mewing and loud purring grew stronger.
I know it is far too soon to tell, but I think this kitten will be a medicine cat. Not like Rose. Not in an instant touch way. In a quantum touch way. Give when it is needed. Push out serenity without nudging. Be there without being instant.
I think I can work with that...

 

She jumped onto my lap now, right as I write this, purring purring purring, and I swear it is quantum healing. Touch when touch seems okay, distance with comforting waves when needed. Yes. This is who Calliope will be. Offering. Asking. Culture of consent. Do you want me to help you? I am here if you need me. I will not disturb you unless you come to me. I understand you. I will care for you. Here is my energy. Here is my Serenity.
The way she touches me is like a healer hovering hands above a patient, drawing power from outside sources.

 

I believe her middle name should be Serenity.

 

I think she knows who Rose is...

Oh, dear. I'm starting to think Luna is sort of... scared... of Callisto. The kitten dashed out of her room, ran into the bedroom, leapt onto the dresser where Luna was eating, got nose to nose with Luna, and Luna hissed, bapped the kitten, snarled - and ran under the bed. I'm not sure how to process that. Under the bed?

And here's the funny thing: Callisto is so active, excited, and energetic that I may just nickname her Pinkie Pie or Rainbow Dash. She dashed from room to room with amazing enthusiasm. She has no idea how to work the stairs yet; she managed a couple before getting confused and weirded out, and rushed back up.

My big concern is Luna and Jupiter. While Jupiter is just hissing and backing off, Luna is hissing, smacking and snort-snarling and running away. This really needs to last several days, this isolation. I'm pleased that Callisto enjoys the other rooms and appears to be... if not fearless, then at least confidant and assertive. But Luna hiding under the bed because of a kitten? That's a tad odd...

But no matter what, this little gorgeous mixed tabby Egyptian-Abyssinian girl with the golden jade eyes is definitely my kitty.

Back pain back pain back pain backpain backpain backpain NNNGGHH.
It's the lumbar area, leading to sciatica down both legs. Of course, you know? I've got an appointment with my new orthopedist on January sixth, and we're going to get be fitted for true customized orthotics... although I am going to insist they be cushioned, if not highly comfortable. The ones I had as a teenager actually made my feet hurt whilst walking. I still have the left one from those days. It is not comfortable. I understand practicality and function, but still.
Nnngh. Back, hips, legs, knees, ankles. Come on, drugs, work faster.

When we came home from grocery shopping, I looked up at the stairs and whispered, "Mama's home, Rose." I had meant it merely for her memory, for her spirit that now lived in the house, free to leave the clay statue that was a vessel, as Adam had not bound her to it. Adam said, "She's still gone, sweetheart." And I knew, and I reminded him that it was just... oh, I couldn't even find the words. It was just for her ghost. But he knew. We held each other and he knew.

My friends have cried for me, I think, more than I've cried for myself. I will have pockets of moments in which I will break down in gasping sobs, but they are so quick and triggered. A brush that had moved through her fur while I was comforting her in her lethargy, before I understood what was really happening, tufts of fur clinging to the bristles that I may not remove for a while. My pillow, and the soft bean-bag type pillow behind it that served as a general cat pillow but which was generally used by Rose especially in the mornings. A bag of Greenies treats that I realized I no longer had to move to a high place where Rose couldn't grab it and tear into it. Sitting in this desk chair, now, and knowing that Rose will never jump onto my lap and rub her cheeks over my mouth. She will not curl up on the floor, waiting for me to announce that Mama is going to bed so she can lead me there and see me to sleep. Oh. Yes, I'm in tears now. Oh, babygirl. Luna is on my lap now, kissing me, nuzzling. In her own Luna way.

We will be adopting another cat. Yes. It may be sooner than anyone thinks. I've already dreamed of her. I've already named her. I already know her age range. But... you know, someones through the grief and the numbness and the deep deep shock and the horror of physical death, we know deep deep inside that even if it takes only a week or two to get another pet, it is nothing like a replacement. It just means that the throbbing empty hollow burning in our hearts might start to heal, just a little. Luna is still my heart and soul, my queen and my moon goddess, my precious love. Jupiter is still my beautiful big boy, my chatty feline child who brightens my day just by smiling. The new kitten, the new young cat, will never be Rose. She will be herself.
Rose is never coming back, not even in a new incarnation. I'm not even sure I want that; it might hurt too deeply. Rose herself was already the reincarnation of Adam's patchwork dog, Ralph. Rose spent five glorious years learning to love and be loved. In Buddhism, that is a vital thing. All animals understand this. It is slightly Jainist. Adam and I, in our eclectic paganism, are mildly Buddhist in various, often conflicting, ways. It is not possible for us to be fully Buddhist in any way, but eclecticism is a wide arena.

"Life is a journey.
Death is a return to earth.
The universe is like an inn.
The passing years are like dust.
Regard this phantom world
As a star at dawn, a bubble in a stream,
A flash of lightning in a summer cloud,
A flickering lamp - a phantom - and a dream"

Since I am still in shock, I feel like I'm moving through the Kubler-Ross stages of grief completely out of order. I've accepted that Rose is dead and I am deeply depressed. While I held her waiting for Adam, I knew she was dying and I was already angry and bargaining. When the vet said she was critical, I accepted and realized she was probably going to die. When she coded and they couldn't revive her, I accepted and understood, then went right on to bargaining again, blaming myself and how I just kept waiting. It became anger, wondering how the fuck a five-year old cat with a clean bill of health could suddenly present with congestive heart failure and die so quickly. I became angry that we hadn't figured it might be genetic. I became depressed that I couldn't have known. I still blamed myself for not finding a way to take her to the clinic sooner.
When we held her body, I went through acceptance and depression again, followed by deep gratefulness that at least she waited until Adam came home, that Adam got to hold her, that she knew how much we loved her. Depression again. Acceptance.
No denial. Slight isolation.
I updated Facebook right there in the clinic's comfort room, since in this age of instant communication it was much faster than a sobbing phone chain. We finished holding Rose and signed the private cremation form. We walked to the car. My best friend Beca called and all I could hear was her screams, and I cried. She and her husband James came over with food: Whole rotisserie chickens that I ripped into because I hadn't eaten all day. Alcohol because it helped dull the pain. Being a doctor, she commanded that I keep taking Klonopin, as well as baclofen, two to three times a day just to keep my mind and body from shattering.
I realized how desperately I needed them there, and she knew it, and late that night she brought me to bed, fed me my drugs, and climbed into bed with me. Adam was downstairs on the couch with James.
I clung to my plushie ginger tabby Haiku all night. Beca and James left early this morning, and Adam came up to sleep with me. I woke up and instinctively reached behind my head to the soft pillow where Rose would be sprawled out, and I made a soft whimper of intense pain, because she wasn't there.
And Jupiter has been meowing, softly. Meowing and meowing. I don't know how much he understands yet. Luna has been so quiet, but always there, always ready for a hug. It's only been a day. I've only shed a few tears. The real grieving hasn't begun.
People are gently discussing taking me across the street to the new shelter on Solstice or after Christmas, to let me adopt a cat. Others have suggested waiting a few months. I cannot wait. Because I don't believe in waiting for too long. My heart cannot take it. I cannot spent months mourning and empty when a pet dies, otherwise I may lose my mind. See... After Tuesday died in November 2006, I spent four agonizing months with a growing, burning, echoing hole inside me, until I begged Adam to take me to the old shelter on Rothgeb just to look, just to see... and that was where Luna stole my heart and filled my soul. And one year later, my other best friend Charlotte begged us to come see her former coworker's new litter of five female gingers, and Adam picked up one, looked into those wide bright sunny eyes, and announced she was coming home. And Rose took our hearts and ran.
I never expected the baby of the family to be the first to die.
I think we will always be a three-cat house now.
I want and do not want isolation. I don't want platitudes. I am completely fine with "I'm so sorry for your loss" - as "sorry" is shorthand for "sorrowful" and it helps me to know that others feel the loss and mourn with me. But I am depressed. And I don't know what to say.
We have been getting so many phone calls and messages.
She was only five years old. I guess it was genetic. She was so young.

Now, her soul resides in the gold-cream clay sculpture Adam had made in her likeness months ago. Adam absorbed her energy, stored it, released it, and made sure she would stay with us.









The house of Rose's soul.
Oh sweet Bast, please love Rose and care for her. Give her sweet cuddles and nuzzles and kisses. And give her as many treats as she wants.
With Adam Paul, the sculptor.

Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a free battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
Ah, snow, you've arrived. This part is cool with me. You are soft and powdery and easy to shovel. No ice just yet. You're barely a few inches. I can hobble and wobble and limp and stagger easily.
You see, snow, I don't actually hate you. I only hate your frozen ice parts. The part that really hurts when I slip and crash. See, at least right now you are still powdery and cushiony enough to help me land softly.
I don't hate snow... we just don't get along.
Now I must decide if I want to take the bus to the pharmacy now or tomorrow. I don't know if it matters anymore. These particular refills can wait a couple of days.
Also, whoever invented those magic gloves that let you use your smartphone must have known about Raynauds Disease.

I totally went out to the pharmacy. It started sleeting. A guy asked me if I needed a ride home. He had seen my cane.
Yeah. The snow and snain and slush was all worth it. I got to the CVS pharmacy and back by bus without incident. Plus, a 'free' battery operated shaver thanks to CVS Reward Dollars and coupons (I may never need to balance painfully on one-legged in the shower again).
I'm learning how to use the cane to help me march, scrape, and also test for icy spots. I think the only actually good thing for me is that cold weather helps my asthma issues ease up. Part of me really wants a quad cane for more properly balanced stomping through snow.

To quote Scottish singer Susan Boyle regarding her official autism diagnosis: "Now I have a clearer understanding of what's wrong and I feel relieved and a bit more relaxed about myself."
-Also: why I won't stop talking activistly about it and why I embrace names and labels, but also why I will stay silent at parties, since I seem to be a talking disaster.
Time and place. Time and place. Just because medical science words are a ASD special interest for me doesn't mean I should, well, you know the rest.
(To certain people:
I'm not like you. I embrace diagnostic labels. Names have power. I know what to do with a named thing. You truly feel I must be giving up and in. I truly feel you must not know me well now that I am changing again. Always changing in tiny ways no matter how deeply I stay predictable and ever the same. So I have decided to personally not tell you about all the new details my changed self parts. You don't need to know and I don't need to be smacked down for speaking.
Facebook and LiveJournal are places to chat with like-minded people who will give me stories. You don't have to listen. It's okay. It's just random life.)

Also. Jupiter has been randomly lying on the bedroom floor on Adam's side of the bed, forlornly, so I grabbed a couple of Adam's tee shirts and draped one over his pillow and one on the bed so Jupiter could be surrounded by Daddy's scent, and so I could wrap him in a shirt and snuggle him if needed. He is very emotionally needy and co-dependent, far more than Rose who literally begs for love, so any chance to make the boycat happy and not depressed is a major goal. He's the kind of cat who will gently flop himself onto your pelvis and torso for hours just because you're on the couch. He always seems so anxious. He just wants to know if you will love him or feed him and he'll miss you when you leave. He meyowls up from the bottom of the stairs because he has a toy, he wants to find you, and he knows how great the acoustics are. He's harmless and wonderful, and very very attached - I cannot bear to think of what will happen to him if something happens to us. Poor sweet puppycat.

Speaking of scent, Adam got me a bottle of perfume during his Las Vegas job trip a couple of months ago - Nude by Rihanna ("Fruity aromas of guava, mandarin and pear are located at the opening of the composition. The heart is blended out of white flowers: gardenia petals, velvety Sambac jasmine and creamy orange blossom. The base consists of sandalwood, vanilla orchid and "second skin" musk."). We both love it on me. Sweet and soft and floral and deep. Now I really want Killer Queen by Katy Perry because it is a fruit and flower explosion ("Top notes include wild berries, dark plum and bergamot accords. The main note of the heart is velvety red flower, Celosia, but there are also Sambac jasmine and rainbow plumeria. The base contains cashmere, patchouli and liquid praline"). Oh, indeed.
My personal signature scent, created via Etsy, called Moonlight Witch, consists of real pure extracts Amber, Blue Lotus, Dragon's Blood, Coffee, Chocolate, Green Tea, Coconut, Frankincense, Myrrh, Blood Orange... but I do love exploring various notes and scents when I can.

Some random rambling about my own mind, my imaginary friends, and how my mind likes to invent coping mechanisms that talk back.

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

Amara, at the beginning of her creation, was not even human; formless and elemental. These days, she is human shaped but she loves to take bits of my writerbrain as inspiration. Her ears are pointed and her eyes and hair change color with her moods. She likes to mimic my bone structure and basic figure shape, just with more muscle intensity. Serena says it's because Amara wants to show me that I am beautiful.
Also, when I saw a Google image painting of a woman with elf ears and a unicorn horn, posing with a unicorn, Amara insisted I make it my current Facebook cover photo. She made herself up to resemble like that character while still mimicking my features, including the horn that represents the third eye - just with chestnut brown streaks in her white-lavender hair and honey brown flecks in her intense blue eyes... although none of that is her true coloring. When she made herself human, her coloring randomly became alabaster skin, gold eyes, and pale flame hair, essentially inhuman. But she kept the mirror shape of my skeletal structure and body shape. She even plumped her lips, made her eyes bigger, and made her nose smaller, because she knew I desired that. It makes me smile, which I think she likes. She wears the same jewelry as me, the same clothing colors, the same makeup colors. She is determined to "reboot" the parts of my brain that are having trouble accepting the recent flooding overload of information about these disabilities and chronic illnesses. The name Amara means everlasting, eternal, immortal... which is why she was formless and elemental to begin with. I finally understand why I created her. And she wouldn't mind being the inspiration for any stories I write. I'm grateful for that.
She insists that my jaw, hair, and eyes resemble the jaw, hair, and eyes of Elena Risteska from Macedonia, which I agreed with and humbly accept with a simple thanks. The only way I even knew about Miss Risteska was through searching for shades of brown.
http://upload.wikimedia.org/wikipedia/commons/e/e2/Elena_risteska.JPG
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12861_elena_risteska.jpg
http://userserve-ak.last.fm/serve/_/18051115/Elena+Risteska+elena+r.jpg
https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-ash3/p480x480/578088_479387062121006_1822646409_n.jpg
http://img27.fansshare.com/pic34/w/elena-risteska/1200/12858_elena_risteska.jpg
http://tekstovi-pesama.com/g_img2/1/e/28986/elena%2520risteska-10.jpg
She just wants me to feel better, to feel my own positive human emotions. Since Amara is still learning about humanity, she looks to Serena for help. In my dreams, they have amazing conversations.
I'm so glad I created these characters. They help keep me sane, emotionally stable, intellectually stable, and psychically curious. Also, every time I meditate and concentrate on my third eye, I actually feel a short unicorn horn on my forehead.
https://scontent-b-lga.xx.fbcdn.net/hphotos-frc3/1469926_10151743304270684_204893984_n.jpg
I just love that my own mind is creative enough to make up whole people with entire personalities, back stories, individual appearances, individual likes and dislikes, and actual behaviors. They mainly come to me in sleep dreams, daydreams, and meditations. My psychotherapist adores the fact that they exist, which relieves me. It's just one of those things that I, Joanna, have in my brain to help me handle all the stuff that life gives me. Awesome.