The Return To Innocence

So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
( Read more... )

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.

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.

***

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

***

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.



***
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.

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.

I'm crying over the death of Robin Williams this hard because people have already started in on the bullshit rhetoric that severe clinical depression isn't supposed to affect the rich and famous. That "If their life is so perfect, why are they so depressed and suicidal" bullshit.
No. Nope nope nope. No. That’s not how it works. Do not insult people like me who deal with clinical depression. No.
Most of his film roles featured depression and mental illness heavily. I'm seeing comments like "He did all those roles with a purpose because he knew what it was like, so how could he do this himself etc" and I cannot help but feel rage...

O Captain, My Captain.
He really was a man I looked up to, in several ways, and one of the greatest actors I've seen.

Look, I've lived with clinical major unipolar depression all my life. To my brain, it's a chemical imbalance - it affects an organ so vital to my existence that not treating it means irreparable damage. There have been plenty of arguments all over about what depression is and isn't: Disease? Disorder? Illness? Emotional Syndrome? People have questioned and fought against the very idea that it is a neurochemical imbalance. People have insisted that depression does not even exist outside of emotional states.
There are depressed patients who are able to live with this illness without medication or therapy, basically using mind over body and lifestyle techniques. That's fine. That's great for them. Sure. Unfortunately, most of those patients will try to push that lack of real medical treatment on other patients, which can be dangerous. And the state of mental health services in the country I live in is awful. All I know is that I when my symptoms rise up, I care for myself as best I can - and try to educate others as best I can.
Right now, I'm in a really really bad place. I'm not in a depressive state. But I'm irrationally upset, anxious beyond reason, physically hurting from emotional agony. That is not a joke, dear detractors of Robin Williams and his battles with clinical depression.

I promised myself I would get away from the internet until I could breathe without screaming and sobbing. But I've already been getting emails and messages from friends wanting advice, as though I might be their Boggle Owl in a way. I want to help. I need to help. I live to help.
I will stay away from forums and communities. Tomorrow, my husband takes me to physical therapy, and later I can unwind fully. But to everyone I love: You know where to find me. I'll still be your Bright Lotus (someone gave me that nickname and it stuck).

I took my own drug treatments. I'll be all right.

http://greensh.livejournal.com/444686.html
http://psychcentral.com/lib/what-is-depression-if-not-a-mental-illness/000896?all=1
http://hyperboleandahalf.blogspot.com/2013/05/depression-part-two.html

Oh! Oh! I forgot! I'd promised a few people here that I would let them know how I was doing with super high doses of pure Omega-3, particularly DHA. As it turns out, calamari oil is much better than krill. And so, I've been taking calamari oil, which contains 500 mg DHA, and 125 mg EPA, which I think is the highest one can go so far.
https://www.swansonvitamins.com/swanson-efas-super-dha-500-from-calamari-30-sgels
It's officially been one month, so I think it is okay to report my findings so far: I feel as though my brain is, for lack of a better term, nourished. My concentration has gotten easier. I had been considering going back on an ADHD drug for ADD-Inattentive, but the Calamari Oil seems to do what Strattera did all those years ago. Neurologically, I feel, well, hmmm... padded? This is so hard to explain! Neuromuscular issues seem slightly easier. Like, I am starting to unconsciously use my left hand more often for "simple" tasks like pouring liquid, picking up small objects. I can't insert and turn a key in a lock, and I can't squeeze any exercise equipment, but the little tiny compensated things are starting to feel smoother. Does that make sense? It really does feel like a kind of CNS nourishment.
I'm including the link to the product I'm currently taking. There is another brand via Vitacost, called Doctor's best, that offers the same dosage at different prices with different pill counts, but this is what I'm using. I even punctured a capsule to see how my cats would like it. Luna and Calliope seem intrigued. I may just brush it into Jupiter's fur, since he has dry skin.
There have been some studies showing that some brain injuries can be partially treated with extremely high doses of pure omega-3, so I'm happy to make myself a self-advocate subject. I don't know what this will mean for my CP as a whole, and I am not expecting nor hoping that anything major will happen. But I do like this feeling that my neuromuscular issues might ease up just enough to let my hemiplegia become less spastic...

Thanks to another trip to Michael's craft store, I have a new set of Faber-Castle Pitt artist pens below Fine, and Calliope has a Beanie Boo dolphin to cuddle, which she has been doing. I have an owl, which seems to work well as a knee pillow.

We went to the nearby Whole Foods as well, where I found my loved chocolate hemp milk, Guayaki Yerba Mate energy shots in Lime Tangerine, Orgain Chocolate Nutrient Shakes, a bottle of Acai+10 Superblend with Seabuckthorn and Mangosteen, and the rare Badger Balm large Lime lip balm. Adam picked up some fabulous cheeses, and a Coffeeholic Cream Cake for me.

Mom called to chat about an NPR medical science podcast about migraines and the placebo effect, and I revealed that forty percent of my smaller headaches can be slightly reduced by intense meditation after taking certain supplement pills. Good talk. Doesn't work all the time, doesn't work for the more intense symptoms, but I know how powerful placebo effects can be for mild and minor pains sometimes.

Luna and Calliope seem to be starting a... well, a tolerance, on Luna's side. As long as I give Luna attention first, she is nice to Calliope during cooperative play, feeding, brushing, etc. As long as Luna Moon knows she is still the precious queen and Calliope Io is submissive, there is peace. And Jupiter has been gently playing with Calliope, with the occasional soft bap on the head. I am pleased overall.

So, while at Whole Foods, I was limping down an aisle with my blue aluminum cane, right behind a tall man who had the same cane, in sparkly black, and we smiled at each other. "So, how are you?" he asked. I said, "Oh, well, the back pain and sciatica are acting up. How about you?" "Yeah, I'm going to need hip replacement and knee replacement soon," he said. "Oh, ouch," I winced. "I can't imagine. I mean, I'm 34, I was born with cerebral palsy, I'm still learning how to use this," holding up my cane. He nodded. "Yeah, my whole left side has been crazy for years." "Oh, mine too! I have spastic hemiplega on the left! The chronic pain has been getting worse for a long time, but I don't need surgery. Yet!" We grinned at each other. He looked around forty or so and over six feet. I could see right away that his joints were bothering him. "Well," he said, "You look absolutely lovely!" I smiled widely and said, "Thank you! You too!" He grinned back and thanked me, then said, "I hope the pain reduces as much as it can." And I said, "Same for you. Good luck with the surgeries." We said our goodbyes and hobbled off. It was as though we had been friends who hadn't seen each other in a while, commiserating in that cripple language that stays away from "Feel better" and steers toward "I hope your symptoms ease up" which, well, we all understand in the chronic pain community.

And that got me thinking. People tell me "You look beautiful/lovely/great" and of course the silent "even though you're in pain" follow-up. And I actually honestly don't mind that at all. It isn't an insult to me. I know they're usually talking about my chronic pain specifically, not my disabilities as a whole. It's an unspoken thing - "You're chipper and glowing and not letting the pain show, rock on with your badass self." I know that so many cripples would see it as a back-handed compliment and insult, because it totally can be. But for me... I guess it lifts my spirits, especially and specifically when a fellow cripple says it and even able-bodied people who may have invisible illnesses. It is something I need to hear from other disabled folks, because even when I think I look hideous and shitty, to hear someone tell me I look great despite my pain makes me happy, which in turn makes me feel psychologically and psychically better, which helps me try to combat the symptoms, etcetera.

So, my fellow chronically ill and disabled folks, how do you react to such a comment? Is it an insult or backhand compliment for you? Is it a lovely compliment? Do you view it differently when it is said by other chronically sick and disabled people as opposed to able-bodied people?