brightlotusmoon: (Snow White Blood Red Light Pale)
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... )
brightlotusmoon: (Asha)
I forgot to come back here after the new year. Sorry, journal. I was busy.

Today, and yesterday, and the day before, I've been... I guess it's ill with a cold, or a cold and allergies? It seems to vary. Obviously, a fibromyalgia flare has been set off. I've been dizzy, shaky, sore, with a scratchy throat, itchy eyes, runny or stuffy nose, yada yada. If it keeps going past a few days, I'll call allergies.

At the end of December, Adam and I began talking honestly about my Neuroweird, and he figured I might do well on an ADHD drug or similar, which made me consider SNRIs, which made me recall my first attempt at Cymbalta in 2002 that went wrong, which made me decide, after talks with three doctors and my insurance, to go back on Cymbalta in place of Zoloft, to see if an SNRI would do better at poking away at my Neuroweird. In combination with the personal therapy regime that will be slowly happening for probably ever, it is working. Most of my compulsive episodes have been very controlled. It is hard work, obviously. Everything is hard work. Sometimes we who have multiple intense chronic illnesses forget to mention how hard it is to just... be. Every day, all the time. Or people who don't understand might forget how hard it is. Not having episodes of... All The Issues, it's hard.
Cough.
Anyway.
Maybe I just forget, because it's all happening to me all at once, constantly, in the background, and I'm so used to it that I wave it off and go "Meh, it's just Things, it's always been Things, whatever" even though my entire brain is screaming and full of storms. I don't listen to myself enough; I'm too used to me. That's part of an upcoming therapy session, too.

Very current parts of therapy have been literally watching comedy videos while exercising. The Nostalgia Critic videos on YouTube, for example, and Futurama on Netflix, and Cartoon Network during the day (Woo, Amazing World of Gumball, woo, and also the creator of Uncle Grandpa was in my high school class, heeyy).

I've been sleeping with plush animals again since childhood. It's fabulous. Ty makes lovely plush My Little Pony dolls.
brightlotusmoon: (Asha)
http://www.speculativeliterature.org/Grants/SLFDiversityGrant.php
I had no idea this was a thing until my mom's novelist friend mentioned it. I'm going to apply and then look at other grants.

BTW, FYI, JSYK, etc: I'm happy. Nothing to do with cults of positive energy or what have you; although positive thinking plays a small part in a specific way, as well as negative thinking, which folds up into balanced thinking energy whatsit. Everyone is always saying "Find your happy." And I have. I'm still going to have low, bad, poor, ugly times, because that is life. People are going to criticise me for things and such, because that is life. Right now, the only thing that matters is how I feel. Good, bad, positive, negative. But I'm just happy. That's what matters. *slowly nibbles on a glazed honey bun*

First novel really is close to finished. I am struggling to figure out what's the better way to blow up everything before reforming. Exploding reality is haaard.
Second novel is flitting around my writerbrain. I think this is going to be all nonsequential. I'll assign chapters later.

LOL, my kitty. Callisto has taken over my leather task chair on which I use a Pillow Pet as a cushion. If I'm sitting, she jumps into my lap, walks behind me, curls around me, and suckles on my shirt while kneading.
brightlotusmoon: (Asha)

Good things.
The personal therapy protocol is juuust starting to work. Slowly and softly. The doctors said slipping off is natural. But my slips are fewer. I think the new drug is working much faster than expected. No terrible side effects after all between dry mouth and that tingly sensation that the world is shiny shiny shiny. But I can already feel those most compulsive thoughts starting to be quiet.

Now, if I could just not be badgered by acquaintances who want me to be better now now now. Yes, this has had me in its psychiatric grip for over four years. It takes tiiime to get the ideal treatment. Yaaaaugh, leave me alone. You don't know. You are not inside my neurology.
Repeat. Rinse.
Those of you who get it, you get it.

So much meditation. It is in my dreams. I am ready to work myself through and beyond. Shut up about it taking all these years. Damaged braining is hard.

I make it hard for people to love me well enough to help. Which is why I need to do this on my own.

/venting ranty ramble

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)
http://www.nancyfulda.com/movement-a-short-story-about-autism-in-the-future

It really is a gorgeous and poetic story. At least one member of the support group I'm in has pre-judged it because there is the concept of a "cure" via grafting in the brain, but said treatment is clumsy and doesn't always work. So, hey, I always say read the story before claiming "if it's about cures it's not beautiful." It's not about cures, it's about living in a mind that sees the world in a way that most people never will.

Autism is vastly different than my other disabilities. I'm proud of it. I'm proud of my brain, everything it has accomplished and attempted during its neuroplastic growth. And having a mother who, while thankfully is not a raging martyr mommy, is at least accepting and respectful of the idea that autistics generally don't want any cure, is good good. I am still so grateful that I wasn't diagnosed until adulthood. And that self-diagnosis is just as valid as a piece of paper from doctors; most auttstics who realize they are autistic (I had both and also encouragement from autists who have known themselves for years and years). It's not that "we were diagnosed with autism" - it's that we realized that our autism makes us what we are. I'm different and I love it. I don't want to assimilate with neurotypical brains. Like the girl in the linked story, I want to look at the universe on the atomic level and know how beautiful it is.
brightlotusmoon: (Asha)
Yes, obviously. Sheesh.

http://m.huffpost.com/us/entry/6081918

Friends have been sharing this back and forth into repetitive boredom, so I'll just add: Yes, this is obviously a strategy I've been implementing for a while in order to manage my mental illnesses, it is totally part of a very very specific personal therapeutic ritual that will take at least another couple of months to complete, and for Loki's sake, this stuff takes time, quit asking if I'm better yet. I've only been ritualizing for three years; most of this takes at least five. Plus, I can't just magically fix damaged neural pathways by thinking happy thoughts. Most people spend decades in therapy, while their acquaintances urge them to fix themselves faster. The frantic urging especially comes from people who've never even been in states of extreme anxiety, clinical depression, endless chronic pain, obsession, compulsion, memory disintegration, traumatic stress, dissociation, depersonalization, derealization. I often hold back from just punching walls. Therapeutic ritual and mindfulness in mental artistry takes time and a large amount of control. I've only been doing it since 2011. By 2015 something will at least be, as they say, Fixed. At least enough to allow other treatments to fall into place. Until I finish that intense ongoing ritual, I'll keep on battling where battles must be fought.
brightlotusmoon: (Asha)
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.

***

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.

***

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.
brightlotusmoon: (Asha)
I did not realize how weirdly difficult it can be to answer the question, "So, what triggered this C-PTSD episode and panic attack?"

I mean, how DO you explain all the fucked up, freaked out, screaming neuronal mess that can cause brief blackouts, episodes of time agnosia, obsessiveness bordering on mania, hyperventilation, emotional outbursts, etc etc etc.

And there is no one thing, two things, any things. That's why it's Complex PTSD. It can be anything and everything. Maybe it's because I read some news articles about police violence against disabled people with no legal consequence for the police. Maybe it's because a friend got triggered by their own things and during our conversation something triggered me completely innocently. Maybe it's because I had a nightmare about that time years ago when a skeevy dude tried to hurt and assault me near a shopping center and was beat up by another guy who just looked at me and said, "Run!" and I fled up the stairs until I couldn't breathe and never looked back. I don't know. I don't KNOW, guys.

You know? You know.

I have reasons for not talking about this stuff outside my psychologists and certain friends. Support is better than silence, though, and I have so much support and empathy to give, so when I need it I reach out to the friends who know.

Anyway. Yes, I took my meds. Yes, I did my exercises. Yes, I ate well enough.

And my cats have not let me out of their sight. (KITTIES)
brightlotusmoon: (Asha)
Magnolia plus Magnesium plus GABA: Good for sleep. Yes.

From a supplement website:

"Q: What is Magnolia Extract?
A: Magnolia Extract is a standardized herbal extract made from the bark of the Magnolia officinalis tree. It is a traditional Chinese medicine that has been used for thousands of years. Our Magnolia products are highly concentrated for magnolia's active ingredients, and contain 90% honokiol and magnolol.

Q: What does Magnolia Extract do?
A: Promotes relaxation, supports healthy adrenal function, supports emotional well-being, and aids in digestion. The bark contains two phytochemicals, honokiol which may reduce common anxiety, and magnolol which supports emotional wellness. Together they enable one to feel better mentally and emotionally.

Q: How safe is Magnolia Extract?
A: Studies show small doses of magnolol and honokiol are safe for normal emotional support. However, large doses may cause a sedative effect and interact with alcohol, increasing its effects. Therefore, driving or operating dangerous equipment should be avoided when taking larger doses of magnolia extract. Magnolia extract has a two thousand-year-old safety record for use as a Chinese medicine, and as an effective relaxant. Use it confidently and safely … but use it responsibly, according to directions.

Q: Who should use Magnolia Extract?
A: Anyone who wants a safe, natural way to relax and reduce anxiety should consider supplementing with Magnolia Extract.
Additional Information:

Magnolia Extract is a standardized herbal extract made from the bark of the Magnolia officinalis tree. It is a traditional Chinese medicine that has been used for thousands of years. Roex Magnolia Extract is highly concentrated for magnolia's active ingredients, and contains 90% honokiol and magnolol.

Magnolia Extract promotes relaxation, supports healthy adrenal function, supports emotional well-being, and aids in digestion. The bark contains two phytochemicals, honokiol which may reduce common anxiety and magnolol which supports emotional wellness. Together they enable one to feel better mentally and emotionally.

Studies show small doses of magnolol and honokiol are safe for normal emotional support. However, large doses may cause a sedative effect and interact with alcohol, increasing its effects. Therefore, driving or operating dangerous equipment should be avoided when taking larger doses of magnolia extract.

Magnolia extract has a two thousand-year-old safety record for use as a Chinese medicine, and as an effective relaxant. Use it confidently and safely … but use it responsibly, according to directions."
brightlotusmoon: (Asha)
https://adiaryofamom.wordpress.com/2013/03/21/hate/

"In one of my favorite posts about identity-first language, Zoe at Illusion of Competence writes the following:

I was at a conference last summer at which Ari Ne’eman gave an introductory speech, and it fell to him to explain why ASAN uses identity-first language. One of the things he said, which I really liked, was “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.”

No matter what our view of autism’s origins, I think we can agree that it isn’t an appendage that can be taken on and off at will. It travels with our kids. IN our kids. As PART of our kids. And as such, it’s simply not reasonable to expect them to understand that we loathe autism but we don’t loathe them. Or that we hate this thing that afflicts them, but they shouldn’t hate themselves. Because even if we could get them to understand the difference intellectually, we’d be hard-pressed to get them to FEEL the distinction. And after the other night (and last night again and this morning again while Katie was still coughing and Brooke was still screaming), I was convinced that if we continue to tell these kids, through our words (to them or in front of them) or our actions, that we hate / fear autism, we are teaching them to hate / fear / pity themselves for having it. People do not separate themselves from what they have / how they act / what they feel / how they experience the world. And we as a society don’t either.

For the love of God, Katie had a COUGH – something temporary and fleeting. Something that will, God willing, be gone in a matter of DAYS. A cough – not the filter through which she tastes, sees, smells, hears, touches and perceives everything in her world. Yet because Brooke hated the cough, Katie’s entire identity became conflated with it. Driving with Katie, talking about how she felt, the implications of the moment rushed over me. And the weight of those implications was almost unbearable.

If we keep FIGHTING autism, HATING autism, FEARING autism, talking about the UTTER HAVOC that autism wreaks on us and our families, we will end up with a generation of children who have learned to hate themselves – or who, at the very least, hate things about themselves upon which they have no control or that, if they can control, they do at tremendous cost to their sense of well-being and self-esteem."
brightlotusmoon: (Asha)
This is the greatest.
http://yoganonymous.com/watch-ultra-spiritual/

Good news: Apparently, most of this small weight gain is actual muscle. Who knew.
Annoying news: Everything hurts in such a very specific way everywhere that most forms of exercise make it all worse. The only things that seem to make it better are isometrics and mild qi gong and a few basic Pilates-style moves... sooo, physical therapy with a spiritual bent?

Also, I still have a stress reaction to even the idea of "doing yoga for pain". None of my doctors are surprised. Plus, the physical therapist suggested some lovely snarky replies to "Have you tried yoga for your pain?" - my favorite is still "Well, yoga tastes like artificial banana, and I hate artificial banana flavor, so I don't want any yoga, thanks." Second favorite is "Nah, I'm still trying that floating Jedi thing in the swamps. I'd rather take the Dark Side with the cookies."
Seriously. Don't yoga push me. I did try it, it was painful, I found other things.

Now I feel like mimicking that scene where Bart draws a picture of Flanders and chases Homer around with it yelling "Howdily doodily! Howdily doodily? HOWDILY DOODILY?" Luckily, I haven't been pushed in a while, and the last few times, I remained calm and cool, because I am still fucking awesome.

Addendum:
Also, it's really interesting: I am totally fine with basic yoga, with flow yoga, with restorative yoga. But it is the way people talk about it as though it helps everyone heal everything? That is what I gripe so much about. Maybe some poses will help ease cerebral palsy issues, fibromyalgia issues, joint issues. Maybe. For some disabled folks. But if I say something like "No, thank you, I've tried that, it was too painful, it made things worse, and I have found other exercises that help me," I expect people to, if not back off, then at least acknowledge my reasons. The actual fact that many pushers have brushed off my reasons and kept pushing is what makes me want to slap them with their yoga mats. So when I talk about an exercise by calling it a name that is also the name of a yoga pose, please please do not assume I have taken up yoga. It's just that "Warrior Pose" is far simpler than having to describe the whole thing.
Comments:
Anna Sirén: Yoga? Us? Really? ...?
Joanna Capello Paul: LOL, it is to laugh. But by gods, people love to try.
Anna Sirén: Jesus, I can't imagine you with your ankles behind your ears, and that's not an insult.
Joanna Capello Paul: OMG ow. Ow ow ow OW.
Joanna Capello Paul: I'm just glad other CP folks get it. I don't know what's so particularly special about yoga, but it's become so elitist in many ways. And if I say I'm "doing Child's Pose" or something, I feel like I need to add "not actual yoga because that is painful" because just because it's a stretching exercise doesn't mean it's a yoga pose.
Cara Liebowitz: When a teacher who knows how to handle Ceeps is doing it, yoga can be nice. *coughcough* Kara T. Billingham. Yoga at crip camp was great fun, if painful.
Joanna Capello Paul: My mom teaches a certain type of yoga to seniors in Southampton sometimes, and the moves are so simple they're barely even yoga. What bothers me really is this culture of yoga-ier than thou elitism, and gods forbid I perform a "yoga style type pose" that is not yoga.
Cara Liebowitz: I wonder if Kara and your mom know each other. Next time you're in the Hamptons, stop by The Yoga House, LLC and ask for Kara, tell her you know me. One of my favorite things about Kara's yoga was that she encouraged us to laugh if we wanted to.
Joanna Capello Paul: Hmm. I'll ask my mom! Have you spoken with Kara lately?
Joanna Capello Paul: *looking at website* Well, it's good that she teaches Kripalu. My parents' basement tenant, who is a massage therapist, is a certified Kripalu teacher.
Cara Liebowitz: We speak every so often here on Facebook, last I saw her was over the summer. She is wonderful, wonderful, wonderful and so is her husband. Two very influential people in my life.
Joanna Capello Paul: I haven't been through Hampton Bays in a long time, but I do recognize that sign and building. I have a feeling that Kara and my mom have run in similar circles.
Melissa Boyer O'Doyle: I'd rather take the Dark Side with the cookies.
Heather Stover: I do vinyasa flow yoga and restorative yoga. It helps. With some things. It is not some magic cure for everything. If you're not into it people should leave you alone, your yogi wouldn't want you there with any less then a willing mind and heart.
Heather Stover: Gentle yoga classes are the bomb. I hate elitist yoga snobs.
Mad Miriam: You know you might just get people to back down more quickly by simply sating that you have a very satisfying home practice, thank you very much.
Joanna Capello Paul: ...except that when they keep nudging and insisting, I tend to feel backed into a corner, and I start snarling. I'm a very peaceful person. But I am also shy and isolated. I really don't like being pushed.
Mad Miriam: If your agreeing why are they still nudging and insisting?
Joanna Capello Paul: I really wish I knew. People are very odd.
Mad Miriam: I'll say. I'm sorry, I for one do not push cause well I know you have met the practice where you are at and since yoga means union isn't that the fucking point anyhow?
Joanna Capello Paul: Agreed. That's why I am so upset and pissed off when people don't seem to understand the whole damn point. Union is about, y'know, respecting people's choices. The fact that there ARE yoga practitioners who almost bully others into doing their kind of yoga - particularly disabled people - hurts me.
Joanna Capello Paul: For example, in the cerebral palsy support group I am in, there have been stories of non-disabled people pushing CP folks too hard, leading to injuries that were not fully recovered - physical and emotional. And that is just not right at all. And I feel like that is part of the weird elitist attitude that shouldn't even exist with yoga practice.
Mad Miriam: OMG Joanna Capello Paul I could not agree more, as a fairly mild arthritic I get the same shit and I don't get why its so hard for some teachers to understand that just cause I got into a really low lunge last week this week my knees and hips might just be too stiff to go there and that it does not mean I am not dedicated to the practice, it means I am listening to my body, something we should all aspire to do more often.
Joanna Capello Paul: Listening to our bodies! Exactly! I don't think people like that care about listening to the body anymore. You do what YOU must do for YOUR body. And I am so burnt out on teachers who don't listen. It's why I do restorative, flow moves with my mother over the phone.
I mean, I literally cannot be straight. When I try a lunge, or a pose that requires balance, I have to ask someone, usually Adam, if my body lines up. And when he helps get me into a straight aligned line, I start wobbling. It hurts. I am in serious pain. My body, my very bones, were never going to align like that. And so I need modification, compensation, compromise. And the fact that a lot of yoga practitioners have insulted me just for that literally created a stress reaction in my brain. So when I talk about yoga poses, I have to say "modified basic yoga" otherwise I start hyperventilating just from memories.
Mad Miriam: It is a myth that our bodies and bones can align to some artificial standard, we all all have such diffent experiences and phsyologies that make up who we are and it my mind if you are making room for the breath and creating sensation, but not pain you are doing it right. I totally agree through and think it is part of the problem with the comodifying of yoga, I think once upon a time, maybe there was the root of the notion that yogis practiced to access a place beyond pain and body and to reach a space where they could meditate and focus on breath and vein, but with institutions like lululemon and power yoga people see their yoga as about perfecting the body and not reaching past the veneer that is the body. Its fascinating and sick really.
Joanna Capello Paul: I appreciate you saying that, Mad Miriam. It makes me feel better, knowing that there can't be such "perffect alignment". I was always, always told that I'd never reach any ideal pose with cerebral palsy. So I stopped. And I found isometrics and just started doing meditative stretching, which was my version of yoga anyway.
Mad Miriam: Next time someone starts to push hard ask them if they practice Ahimsa, it is the first basic principal of yoga and translates into compassion for all living things, if they say "Of course." then tell them you do as well and intimately understand what is most compassionate for your body. Namaste.
Mad Miriam: I think all the wrong people have been foisting their opinions on you. I took up Kundalini yoga last year and the whole idea of it is that through the practice you are opening up channels on your spine for the kundalini energy to come spouting out of the top of your head, I expressed concern that I had a slight scoliosis in my spine and that according to this notion I was ineligible for kudalini enlightenment, my instructor said "No worries, the energy meanders its way around these things, it's like a stream." Thus I go with that notion.
Joanna Capello Paul: Ahimsa, eh? I shall look into it!
I have fallen in love with kundalini energy. I do what your instructor says, instinctively. I don't necessarily do all the poses and moves but I reach for that energy in my own way. Maybe one day you and I could get together and practice in our own imperfect methods?

*****
Copying stuff from other social media sites can be interesting...
brightlotusmoon: (Asha)
Sooo, you know how I've been chatting with my neurologist a ton, and also with my psychologist? Neither woman has spoken to the other. But they both recently gave me the same diagnosis.
(Now, I need to stress that I am perfectly aware of the "Stop relying on so many diagnosis labels, it's just medical stuff, what does it matter, why do you care, why do you think people would care" cliche that has been poked at me by, well, many healthsplainers and people who just want me to stop talking so much about my medical history, future, and present. And yeah, I get that. But guess what, I don't care.)
The neurologist was kind of relaxed about it at first, and after I left her office I didn't really consider it. Not until that one session with the psychologist, when she looked at me with tears in her eyes.
It's just that the neurologist used one term, and the psychologist used a different term.
And I would love words from those who are there. Because fuck it, it does matter.
http://www.psyweb.com/articles/depression/chronic-stress-disorder
brightlotusmoon: (Asha)
"...Williams died by the claw of the ghastly inner monster that severe depression lodges in the human spirit, losing a long fight with the unholy ghost." -Brain Pickings (included is a link to a book referencing clinical depression to a holy ghost)

In my last session with my therapist, I kept calling depression The Hollow and a Dark Ghost and The Nothing and, naturally, true pure abyss. In such violent howling emptiness, there could be sound and fury, signifying nothing. And sometimes there is just nothing. Fury would be an emotion, after all.
(And I know why depressed people don't tell the tale, lest they be called an idiot. They'll be mocked today. And tomorrow. Tomorrow and tomorrow and tomorrow. And they are heard no more, and as they are poor players, life is but a walking shadow. Out, brief candle. -And people wonder why we get angry when mental illness gets blamed for so many blameless things and things where mental illness is completely not ever the blame. This is why we can't have nice things.)

People always ask me why I cry when I say I am hollow, empty, ghostly, feeling nothing. Isn't crying an emotion? they say Doesn't it mean you feel something? they say. I think Allie Brosh, who wrote the greatest description of depression I have ever read in her blog Hyperbole and a Half, said it best: It is just something that is happening.
Because I don't feel like crying. I'm crying because my body is having a reaction. A symptom, if you will. Something needs to release. Some sort of physiological reaction must occur, lest I literally fade into ghosts.

I understand some of the reasons Robin did what he did. I don't know why he did what he did. No one knows why. No one can know why, because no one is Robin.
People have the same thoughts and feelings and illnesses as Robin had, and they see everything he saw. But none of them and nobody will ever fully purely viscerally know, truly know why he, Robin Williams, the funniest man of a thousand laughs, physically participated in his own death. Only Robin Williams knows.

Cool story, bro:
Someone who survied her own suicide attempt once told me that for her, there was only pain, agony, chaos, and the kind of despair that consumes utterly. Beneath it was a nearly robotic thought process. Any emotional thoughts came from a distance. As she began the process, she became enveloped in a still emotionless sedating transcendent serenity, and time slowed down, and she literally had no more thoughts. Since she was stopped by other people, she couldn't tell me much more. But she told me that during recovery, she experienced every single one of those sensations at once, from the pain and chaos to the calm transcendence. It took a lot of sedatives and intense biofeedback to help her out of that state and she was put on suicide watch again for a few days. They allowed her family to bring in her kitten, which helped so much that she now advocates for cat therapy when treating mental illness. I think of her when I talk to attempt survivors. I only remember her first name and some day I will forget some of her story. But she lives a different life. Not better nor worse, just different. She has learned lessons. She doesn't regret things. She still battles symptoms and switched to a new drug regimen and still does biofeedback. She hasn't had any suicidal ideations in over a year. She also treats her cat like the most important sentient being in the universe, since he helped save her life. Cats are awesome.
brightlotusmoon: (Asha)
Really, that's all I wanted to say. The physiatrist prescribed twice a week sessions for an hour and a half. My therapist, Michael, looks like a cousin of actor Jensen Ackles. We are doung slow gentle sets that engage all the muscles in my lower back, pelvis, and thighs.

Also, the Zanaflex has been fantastic.
brightlotusmoon: (Asha)
Well, then. That was the second time someone contacted me and said, "I read your blog and I'm worried because you sound so crazy. It's no big deal if some stranger died. It doesn't affect you. Why are you so sad?"
And I truly don't think that my answer of "It's my blog; I'm venting my thoughts. It's nothing you haven't seen before." was placating.
Like... um. Hi. Have you met me? I'm verbose. I'm also mentally ill. Between verbosity and illness, I love to ramble on about life, mind, the universe. To read something I write and automatically conclude that I am "high levels of crazy" is insulting. Thanks, readers. I love you too.
It's basically the same attitude as "Well, maybe Autism Speaks wants to eradicate autistic brains and never bothers to actually help with services for autistic people, but have they hurt you, personally? Why do you fight against them? They're probably doing good things."
It makes my brain hurt. So much. Mainly because ignorance up the ass.

No, I'm not making my journal friends-only. I'm happy to show, publicly, that I know what people think. And that I know how irritating they can be. And how very little they know about who I am. Sucks to be them.
But yeah, I talk about mental illness and how deeply that sort of thing affects me. I use words that might not appear "rational" or "worldly" or "down to earth."
I'm skeptical to a degree, but I'm about thisclose to moving away from the skeptic movement entirely. It's full of assholes.
brightlotusmoon: (Asha)
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
brightlotusmoon: (Asha)



Okay, so the above post on my Facebook has been getting a lot of awesome replies, and I wanted to share it here so people could see what I mean. I'm gonna copy the post itself here. If people's comments show, please don't bug the people.

Here is what I wrote:

So, fellow adult autists: Can we talk about autism comorbid conditions? When explaining the more annoying aspects of having an autistic brainworld to health professionals, the genuinely curious, and people who want to learn more, I've started talking more about autism's comorbidity. Because I have talked so much at length about cerebral palsy's comorbid conditions - which, in fact, can intersect with autistic comorbidities.

Also I ask all this since cerebral palsy is the result of static brain damage; ie periventrucular leukomalacia, which is closely related to, even can be a type of neonatal hypoxic-ischaemic encephalopathy. Cerebral palsy is technically a result of static non-progressive collective brain injury. So cerebral palsy itself stays as static damage, while its many comorbidities march on progressively, causing widespread chronic pain, a sort of premature organ aging ahead of chronological aging, bone and joint debilitation, muscle atrophy, etc - generally beginning in the late twenties, peaking in the mid thirties, and slowly moving forward through our lives.
CP alone is ugly and worrisome, but most research is so focused on children that older adult patients tend to be ignored. It's only recently that adults with cerebral palsy, specifically spastic CP, have been studied. Our systems are... I don't know the right phrase. Degrading? Slipping? Damaging? Certainly debilitating and disabling. As we hit our thirties, many of us do get worse. There has been a giant amount of self-denial in the CP community. It brings up a rallying cry of "I'm strong! I can fight this disease!" except strength isn't the point, you can't fight, and it's not a disease. It's a disability, and it's personal to each individual.

See, I'm spastic and ataxic hemiplegic, but mild enough that I've gotten "But you don't look disabled!" all my life. Even when my left side goes through classic flexion, internal shoulder rotation, toe walking, all very obviously (you see, it doesn't stay like that all the time, hence the mildness. But when it doesn it's obvious enough to get "What's wrong with your arm? Why are you limping so much? Were you in an accident?" comments.
However, the chronic illnesses that developed in my youth that we all ignored because we figured "it was just from CP" have gotten so much worse in my now 35 years. I am in a lot of fibromyalgia communities, for example.

Now! Since autism's comorbid conditions include anxiety disorders, sensory processing disorders, neurological disorders like ADHD and OCD, mental illnesses, epilepsy and seizures, visual problems, spatial problems, depth perception problems, I want to cross-check them with cerebral palsy's comorbids, which include... all of those, plus pain, joint issues, nerve issues, muscle pains, skin conditions.

But fellow autists, please correct me if I am wrong on things. I need to figure out how many of my comorbids are specifically connected to autism so I can sort them all out, charting and making patterns and checking them against the comorbids from cerebral palsy. What are other autism comorbids?
Also, I don't like saying things like "autism symptoms" since this is how I am wired from birth. Like cerebral palsy. So I've been saying "comorbid condition symptoms". Does anyone else do this?

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