brightrosefox: (Default)
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... )
brightrosefox: (Default)
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.
brightrosefox: (Default)
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)
brightrosefox: (Default)
Holy random acts of kindness, Batman.
After getting my flu vaccine, I went to look at the cane rack, because they have this beautiful blue and silver one that looks like dragon scales, and I have been waiting for discounts and coupons so I could get it. The price is under twenty dollars, but still.
A middle-aged man who looked so much like Idris Elba that I did a second take, also reached for the blue silver cane. Our eyes met, I smiled briefly. He said, "You know, I bet this would make an awesome magic staff for cosplay."
I grinned and said, "Good plan! I should at least join a game just so I can brag. Or just be my paganish elf self and cosplay every day." Which was blurted out because my filter is so thin.
The Idris Elba lookalike chuckled. "I adore that idea. I just pray to all mighty Atheismo that we aren't going too deep. Like that Tom Hanks movie."
My jaw dropped. "Duuude," I said. "Futurama reference plus obscure D&D rip-off movie nee book reference? Cripple high five!"
We high fived and missed on purpose, stumbling. "Mild cerebral palsy, spastic hemiplegia" I said. "Mild cerebral palsy, diplegia mixed," he said. "And knee arthritis."
"And sciatica," we said in union, surprising ourselves.
"Fibromyalgia and epilepsy and autism too," I added.
He said, "My twin nieces are autistics! Their world is so awesome. I think they prefer me to my brother when they're in meltdowns, they talk about what's going on in detail."
"Awesome!" I said.
At this point, we had been staring at the canes and I had been avoiding too much eye contact. I was about to ask the Idris Elba lookalike about advocacy. Then I saw a gleam in his eye and sensed a topic shift. "Hey, listen," he said. "I'm a proponent of the pay it forward thing. I know we're strangers, but I do know enough about you that you really want the dragon scale cane."
I tilted my head. "Yeeeaah?"
"So, okay." He pulled some pieces of paper from his pocket. "I've got a buy one get one half off for this brand of canes. I will buy you your cane. What do you think?"
I blinked a few times. I looked at him. He wasn't hitting on me. He wasn't being creepy. He was just a fellow cripple offering help.
"Okay," I said, "thank you! That's really kind."
"Hey, the community needs all the assistance we can get from each other. Cripples helping cripples, you know?"
I smiled. "Totally."
As we walked to a register, he said, "I want you to know that I had no intention of hitting on you. I see your rings, and for all I know they could mean something else. But while I think you're a gorgeous-looking person, I have no plans on being a That Guy. I punch Those Guys on a regular basis."
"Huh?"
"Physical trainer. Not so much punch as pinch in sensitive areas. Men can be scum."
I giggled. "Hashtag Not All Men!"
He laughed. "Anyway, let me pay for everything." He nodded at my basket, which had a few comfort items. I immediately said he shouldn't, since he was getting me the cane.
He then put my basket on the conveyor belt, looked at me until I noticed that his eyes had gold rings, and said, "Then pay it forward. Help another cripple." The corner of his mouth turned up. "Even if it's just donating to help someone get better access."
I nodded. I was going to cry any minute. He paid for everything, put his things in two totes and put my things in two more totes. He saved me almost forty dollars.
He said, "I would offer you a ride, but my friend's picking me up so we can go back to Philly. It's been a great road trip so far."
I nodded. "It's cool. I'm going to take the bus home anyway." I was feeling giddy. "Well, obviously we had this encounter for a reason. So. It was lovely meeting you, clone of Idris Elba."
He threw back his head and laughed. "I get that a lot. Same to you, clone of Mia Sara. Anyway, I'm Laurence."
"Joanna."
We fist-bumped and he helped adjust my cane for my height. We walked outside together, and he stood at the curb to wait for his friend while I walked across the parking lot. I turned and waved. He waved back and kept looking at me. I realized it was to make sure I was safe.
I got to the sidewalk crosswalk and peered back. I saw him get into a green SUV. I realized I would probably never see him again.
I am definitely going to Pay It Forward.

***

Also! Links! For future reference!
http://www.neurodiversity.com/main.html
http://cerebralpalsy.org/about-cerebral-palsy/associative-conditions/
http://www.disabilityscoop.com/2013/10/03/autism-common-cerebral-palsy/18775/

***

Also!
PMS is vicious. Although with oral contraceptives, it's technically withdrawal bleeding rather than menstruation. Besides, I haven't truly bled in over a year. Being on the highest dose of birth control for over fourteen years will do that to some women.
PMS is vicious. A veliciraptor chewing through my pelvis. There's a photo out there of a plastic female human skeleton, with a toy raptor stuck head-first through the pelvic bone.
And the bloating and bizarre fluctuations on the bathroom scale.
Having slid back to psychiatric anorexia after failing to control neurochemical anorexia, I know damn well I should not stand on that scale especially during this time. I know damn well that numbers don't mean as much as how my clothing fits. But paranoia bred from life-long anxiety over disordered eating patterns is paranoia. And then there was the entire food=growth=death connection when I was little. And then there was being under a hundred pounds until my mid-twenties. And then there was the anorexia voices insisting that I needed to get back to that, being under five feet tall. I was never overweight. I used to weigh something around the high "set point" - but I have no idea where I've constructed this memory of being convinced to lose twenty pounds. Unfortunately, my illness has burrowed deep enough into my subconscious that my thoughts have turned to the classic hallmarks of anorexia: "I absolutely must be below X number or I will never feel right". The unwillingness to stop. The belief that everything is wrong. I know where I am. I know what's happening. I've been able to compartmentalize and separate enough so that I smack myself when those thoughts occur, so that I at least eat an apple or two, or cheese, yogurt, celery, even cheesecake or dark chocolate. My friends are with me.
Sag Harbor will happen next week, with Thanksgiving. Part of me is in a total blind mute panic. That part doesn't want to eat anything. That part wants to Be Good, Be Perfect. It doesn't matter that I'm over thirty, says the panic. It only matters that I am extremely small and I must keep being extremely small.
To bring everything around again: PMS is not helping. PMS is several numbers upward on the scale because of fluid retention, bloating... losing that fight to not overeat. PMS is barely fitting into the purple dyed jeans yesterday and having them slightly loose today. It isn't helping anything.

But I look at that blue and silver dragon scale cane, bought for me by a total stranger with the same disability as me, and I think the best way I can Pay It Forward is to make sure someone I care for stays as mentally healthy as possible...
brightrosefox: (Default)
Because part of All The Therapy is blogging my feels. And this was short enough anyway.

'kay.

I'm having a Being Elsa day. My symptoms are awful and well beyond control, and the smallest thing triggers the fibromyalgia pain and the mild C-PTSD symptoms. I cannot even hear or read someone speak from the cult of positive thinking without internal screaming.

I've seen many other friends here having similar issues. I'm not dealing with a terminal disease, but said terminal friends keep reminding me that we are all "In This Together" (that's my current ringtone. It's from Apoptygma Berserk).

I admit, the Being Elsa days seem to counter the Being Alice days (Being Alice is my code for epilepsy, seizures, and postictal aka post seizure state. Being Elsa is a new code for mental illness and neurological disorders including all chronic anxiety, social phobia, chronic stress disorders aka complex post traumatic stress disorder, sensory processing disorders, and some co-existing conditions linked to spastic ataxic cerebral palsy).
That was much words but I was born full of words. I blow word raspberries.

I totally do have gleefully joyful fun talking about my medical history. Interested friends have told me that I tend to discuss it clinically and technically, as though describing a patient who is not myself. I've been told that my medical and scientific wordening as a curious patient has helped fellow chronic illness patients examine their own conditions closely to find ways to help treat specific symptoms. That is such an honor.

Anyway. Is anyone else having their own version of a Being Elsa day?

(Alice is from Alice in Wonderland and Elsa is from Frozen. Because of what happens to them. Etc. I actually still have not seen Frozen all the way through yet. I will, obviously, and it will be many times. But I relate desperately well to Elsa, her hidden aspects, her representing disability, autism, childhood abuse, chronic anxiety, PTSD, personal orientations, and her love for a sister beyond a potential unnecessary husband. I only have chosen sisters and I love them so hard like the stars.)
brightrosefox: (Default)
"...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.
brightrosefox: (Default)
So, yeah, this one's for folks who might read this and think something is "wrong" with me:
I'm fine.
I am not depressed right now. I feel well. Please don't contact me thinking I'm falling into a state of, as someone eloquently put it, 'delusional levels of crazy". Seriously, let's get through this without someone messaging me just because I "don't sound right."
Something awful happened, someone died, and since that someone was extremely famous and extremely beloved and died in a specific way and had a specific illness shared by millions of other people, this will be talked about. In fact, this is talked about a lot; but it can take something big, like a celebrity death, to get it out and open.

This isn't even about Williams anymore, although for a long time he will be its centerpoint. This is about something that is still mocked, teased about, and shredded in rhetoric and literal disbelief. It must be easy to say "Just smile, just cheer up, it's not that bad, people love you." That's not how this works. Maybe it needs another name.

http://www.avclub.com/article/robin-williams-depression-and-very-real-struggle-s-208070
Quoting:
" "My mind played one thought over and over, which was “Kill yourself.” It was also accompanied by a constant, thrumming pain that I felt through my whole body. I describe the physical symptoms because it helps to understand that real depression isn’t just a “mood.” "
Quoting:
"It might not have been that simple for Williams, though. We may never know what kind of therapy he went through, though if his empathetic performance in Good Will Hunting is any indication, he must have at least known therapists in his life. He could have even been through everything and still felt like he had no choice. In the wake of his death Monday, a lot of Twitter eulogies noted that “if you’re sad, you should say something,” and while that’s probably true, for so many people who are depressed (one in 10 Americans), it’s not that easy. You’re constantly crippled with sadness, unwilling to burden those around you, or unable to ever pull yourself out of it, even with that help, even with that shoulder to cry on. Once someone gets so depressed that they really dig themselves into a hole, it’s nearly impossible to ever fully get out without real long-term work, and even then, they might still remain a little muddled, a little muted, kept under glass and without a real way out into the world."

That is powerful. This whole thing is heartbreaking. And you know what, yeah, I do want to keep talking about it.
brightrosefox: (Default)
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.
brightrosefox: (Default)
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
brightrosefox: (Default)
Sometimes I forget that this is the place I can always come to when I need to vent.

There has been pain, pain, pain, fatigue, pain, and tests. I had a brain MRI because the neurologist wanted to have an updated picture of my brain. She wants to make sure that the issues I've been having are not necessarily seizures but severe hypertonic spasms. Next month, I will have a video imaging EEG for eight hours to see how often I have seizures.
None of this worries or bothers me. I almost don't care anymore.
I hurt. I'm exhausted. Whatever. This is life. Like... my mom keeps wondering what I can do to "make it better" and at this point I just spin the wheel of answers. Nothing makes chronic pain stuff "better" - it just lessens the symptoms.

So, anyway.

"In the best known version of the Greek myth, Persephone is dragged down into the underworld by Hades, whose title is 'Pluto.' But in earlier, pre-patriarchal tales, she descends there under her own power, actively seeking to graduate from her virginal naïveté by exploring the intriguing land of shadows. 'Pluto' is derived from the Greek word plutus, meaning 'wealth.' Psychologist James Hillman says this refers to the psyche-building riches available in Pluto's domain. Hades, he says, is the 'giver of nourishment to the soul.'" - Rob Brezsny

"I am channeling my matron goddess Persephone today. In the original myth, she chose to descend into the world of Hades in order to gain knowledge of the shadows. Hades had a power to nourish the soul, which patriarchal translations misinterpreted. There was no abduction. There was no assault. I always sensed something beyond the stories.
In my own Joanna way, I see Persephone as brightness and Hades as darkness. The lotus and the moon. Mage of light and mage of dark.
The story of Persephone and Hades is probably one of the most misunderstood, misrepresented, and mistaken relationships in mythology. I have never been so relieved to see my suspicions confirmed."

I am still obsessed over the original myth of Persephone and Hades - how she so willingly and deliberately descended into the shadows, how Hades in fact was nourishment for souls. I grew up knowing that Persephone was one of my goddesses but I didn't like the patriarchal story. How wonderful and relieving to know that there never was a kidnapping. The more I meditate on my connection with their relationship, the more I feel powerful, relieved, relaxed, and free. I may one day figure out enough lucid dreaming to really communicate with the part of the gods that resides in my Higher Brain and Subconscious mix. You know, the Quantum Psychic Consciousness.
Oh. I'm professoring again. Cough.
In conclusion, polytheism is awesome and if you can connect to the deities that call you, it can be enlightening.


So, anyway, all my medicines and treatments have been wonderful and ideal. Yay.
brightrosefox: (Default)
Seriously, though. This toothbrush containing edible gold, bought at H-Mart, made in Korea, seems to really do something. I've taken colloidal gold before. It was good to my teeth. The toothbrush, with nothing but herbal powder, actually seems to make my teeth feel clean, smooth, and hell, even detoxified. I don't even know if that can be a thing. I used it dry a few times and got the same sensation. DeoLife toothbrushes. Gold, bamboo charcoal, silver. I get the silver and the charcoal, those are famous for being antibacterial and such. The one with the gold calls itself detoxifying, removing plaque build-up easily. I am skeptical, but there seems to be some interesting evidence. My teeth are certainly whiter.

So, "Orphan Black" is still awesome. "Black Box" is still interesting despite possibly turning into a "magical mentally ill doctor always saves the day" stereotype. I mean, I really need to see more than these first two episodes, and I hate that a mere two episodes in it is already being torn by critics. But I mean, it's like watching my life in an alternate reality. What if I were a neuroscientist, dealing with my own neurodivergence and mental illnesses, able to help my patients precisely because I could connect to them on such a specific level... I need to keep having faith in the show, except for how Catherine doesn't want her fellow doctors to know she is bipolar, even though they probably wouldn't give a shit. Like, the boss was saying that any doctors with medical conditions needed to report them, since that one surgeon with the brain tumor had a seizure during a brain surgery and became suicidal. I realize that my disabilities and invisible illnesses are my private business. But if I were a specialist working in a hospital, in charge of brains, I might understand that my supervisors might want to know about my specific mental illnesses, you know, in case I had an episode. I don't know. I find Dr Black a bit untrustworthy with her addiction to her mania. I realize she has wanted to keep her bipolar private for her own Reasons. But I don't think that is helping anyone, least of all her daughter. I mean, there is a teenager involved, who is already displaying symptoms of her own. Does Catherine really need to stay under that radar if it might cause damage to her kid?
Thoughts, anybody?

Also, this is something I wrote on Facebook and might as well copy here.

***
http://chaoslife.findchaos.com/aging-agility
Perhaps I should attempt this "Max Capacity" exercise thing they describe in the comments. So far, kundalini has done nothing for my joints, but I am a smidge looser, so. As I told a friend, I am maintaining a broad sense of humor. Spastic hypertonia plus ataxia equals falling over and bruising myself. Which must be laughed at. Lest I go mad. But, you know, I learned something very important: Now that I have made the very personal decision to do a very specific type of yoga on my own, with no suggestions from anyone, I feel that I can better combat health zealots.

Speaking of, I so called it: A commenter posted this: "Not to be a bother but… If you did a little more exercise… I mean, there are 80 year old people that can do a perfect arch, so the age is just an excuse to do not do anything!"

Ahh, health preachers. Everyone knows what's best for you, and obviously you cannot think for yourself. It's like partisan politics, but way more personal. One side wants to be a coddling Mommy, one side wants to be a strict Daddy, one side wants to be a weird Uncle, nobody wants to actually help you without taking something for themselves. It's fun to sit back and watch, though.

And you know what, guys? I am actually going to ask for yoga advice. Specifically, though, regarding kundalini. I need suggestions for very light, gentle stretches that are good for osteoarthritic knees and hips. In particular, the ligaments are ridiculously tight due to palsy, and they keep tightening back up after any kind of exercise.

You see, I have been having intense dreams in which so much pain has been concentrated in my knees that dream me is often unable to stand and walk without screaming violently, both within and outside the dreams. It has gotten to a certain point in which I start lucid dreaming and become afraid that I cannot change the dream pain. I become afraid in the dream of moving in certain ways. In my dreams, all my fears and anxieties and obsessions are released, naturally, and not even using my cane eases them. It never helps that nobody notices, not unless they are unknown dream people. Too many dreams have taunted me about my friends not seeing these struggles, being too far away, requiring me to walk helplessly until I find relief.
A couple of dreams ago, I was in northern Brooklyn, trying to reach my childhood neighborhood of Midwood, along Kings Highway in southern Brooklyn. No taxi would take me after sundown, and this I was forced to walk and walk, and it did not get better. I had no magic powers. The dream people around me could only walk with me and talk to me.
The dream abruptly dropped me in a Metro station in which the escalators and elevators were broken. It may have been Wheaton, which has the longest escalators in the Western hemisphere.That is indeed a nightmare. For anybody, anywhere, regardless of health. Fitting that it would be in my dreams.

Back on topic: I would love advice on how to apply physical and emotional exercise to my unconscious mind.
However, please do not tell me to stop taking traditional medical treatments. Please do not bash my pharmaceutical medications, since they actively help my symptoms. If you want to see what type of supplements I take that are anti-inflammatory and joint supporting, check my Notes section for a post that lists all my medicine before making a supplement suggestion. Chances are that unless it is an extremely obscure herb, or an unusual TCM medicine, I have tried it.
Eh. I'll post that medication list.
https://www.facebook.com/notes/joanna-capello-paul/take-all-the-pills/10151028056823107
***

I cannot say I am well. Am I ever truly well? I mean, the only reason I consistently talk about symptoms is to remind others that we can work with all of this crap. Many of my dear fellow chronically ill cripples want to keep their posts sharing pain to a minimum, which I support, respect, and understand - because, really, it's the same thing day after day. I think the main reason I'm a frequent updater is because I get so many questions, so many please for help, so many requests for advice and suggestions and just words of love. And those things, I can give.

Also I think I may be in a depression episode. It's taken a couple of weeks to realize that. It's so... light. So subtle. Huh.

So. Other things...

http://juststimming.wordpress.com/2012/05/01/truth-is/
"What if being cured didn’t fix those things?
Because ultimately, if I took a cure, I’d be surrendering. Instead of fighting for my right to be treated and valued as a human being regardless of disability, I’d be letting go, giving in, and letting myself be changed into someone easier, someone acceptable, someone convenient. And I want to be clear– there is nothing wrong with wanting things to be easier or wanting to feel safe or accepted or just being done fighting. That just means that you’ve been asked to be much, much stronger than everyone else for much, much too long.
But if, in order to be safe I have to stop being me?
Then I’m really not safe at all."

http://erinmccolecupp.com/2014/05/01/blogging-against-disablism/
"We are prone to feeling defeated because it’s a battle just to get our muscles to move us out of bed every day, so telling us to “be more positive” in the face of that is kind of insulting."

Sensory Processing Disorder. Cerebral Palsy. Temporal Lobe Epilepsy. ADHD-Inattentive. Major Depressive Disorder. Multiple Anxiety Disorders. Autism. Fibromyalgia. Chronic Stress Disorder. Hypersensitivity. Spastic Hypertonia. Migraine Disorder. Chronic headaches. Chondromalacia. Sleep Disorders. Dyscalculia. Sciatica. Chronic Back Pain. Lordosis. Rhinitis. Asthma. Recovering Anorexia.
Oh, absolutely. Being told to "be more positive" is indeed kind of insulting.

My mom keeps telling me that I've fixated too much on being autistic, on advocating, on activism. She suggested that I just BE. I'll take it.
brightrosefox: (Default)
http://friendly-crips.livejournal.com/204952.html
So, the comment threads have turned awesome and have been a ton of fun. We're still rolling. Starting with critiquing Temple Grandin's societal status as "that famous autistic" and moving to needing autistic representation to cerebral palsy comorbidity to mental illness and neurodivergence, this is one of the most fascinating off-topic threads I've participated in.
brightrosefox: (Default)
Okay, so. This new show on ABC, "Black Box", which has really polarized critics. Some people hate it even though it's only had one episode. The creators insist that it may change how we see mental illness and neurology.
The main character, Dr Catherine Black, is a brilliant, innovative neuroscientist who tries to hide her severe manic bipolar disorder. Except she loves the way she feels during manic episodes, so she often discards her medication, runs out and becomes hypersexual, has hallucinations, becomes a different person. She realizes this and understands the extreme consequences, but finds it hard to stop. Her psychologist, who is wonderful, is worried. Her fiance, who she kept in the dark for a year, winds up liking her hypersexualized, aggressive manic self. Her brother and his wife are raising her daughter, born when Cate was a teenager, who doesn't know that Aunt Cate is actually Mom and who is displaying symptoms of bipolar.
There will be melodrama. There will be intensity. There will be exaggerations. Patients who suffer from all sorts of conditions that Cate will be able to work with thanks to her personal holistic insight into the complex brain. Cate will be shown as an exaggeration of a bipolar patient, and it may lead to audiences arguing over the benefits and dangers of drugs, treatments, holistic treatment, psychotherapy. We shall see. So far, I liked the pilot episode. But it might turn into a "Grey's Anatomy" or even "House" style show, with drama on top of drama, further polarizing audiences. We shall see.
http://blogs.indiewire.com/criticwire/black-box-abc-kelly-reilly-reviews
http://www.avclub.com/review/black-box-its-protagonist-flawed-endearing-203589
But so far, Catherine Black may as well be me in a separate reality, if I had gone for neuroscience in college.
http://www.bostonglobe.com/arts/television/2014/04/23/abc-black-box-bipolar-doc-with-cure-for-what-ails-everyone-else/edYtT036PpTSUZ8ZOrokKM/story.html


Okay, so, there's me. I've been having horrible headaches, neck pain, jaw pain. Probably highly interconnected. I blame the weather for the most part. Every morning finds me ninety years old, performing bed yoga in kundalini form for cripples. Thankfully, the combination of my pharmaceutical and supplemental drugs work really well. I have taken advice and started ignoring naysayers who insist I do This or That and stop doing That or This - my health is my own. To quote The Prisoner: My life is my own. I will not be pushed. Yes, yes, I appreciate all the suggestions for this medicine, that yoga practice, this therapy, that device. I am deciding how to proceed with my doctors.
All the pain and stiffness and aching and stabbing fade into the background when I work, ie writing, which is the best thing. The supplements for ADHD work well enough so I can concentrate, but I need to eat more often, because I take after my father, like when he's outside carving stone forgetting to eat for hours. Small meals several times a day works best. Nut butter-fruit preserves sandwiches on whole grain bread do wonderful things. Grilled cheese sandwiches, with avocado if I have it. Yes. Oh! I have a slice of cheesecake with which to treat myself!
A walk around the neighborhood, quad cane in hand, was helpful enough, after push-ups, weight-lifting, leg stretching. I do what I can.

Also, on an LJ community for disabled people, I was asked to find links for cerebral palsy and comorbid conditions, and I want to remember them, so this:

"Well, I started out Googling cerebral palsy + comorbidity. I joined a private CP group on Facebook and discovered some extraordinary - and disturbing - facts about aging with CP. I'd be happy to try and answer any questions. Many people have no idea. I am spastic-ataxic hemiplegic, left side, born 12 weeks premature, developed periventricular leukomalacia aka white matter death, and at age 35 have actively gotten worse. CP itself is a static condition that never changes, but the syndromes associated with it do progress. In fact, many people with CP don't believe that it gets worse.

http://cerebralpalsy.org/about-cerebral-palsy/conditions/
https://www.clinicalkey.com/topics/pediatrics/cerebral-palsy.html
http://questioning-answers.blogspot.com/2012/10/cerebral-palsy-and-autism.html
http://www.ncbi.nlm.nih.gov/pubmed/20654035

These are just some of the articles. I can give personal insight as well. It's very fascinating. "
brightrosefox: (Default)
This is especially for[livejournal.com profile] naamah_darling because it talks about how powerful and precious internet communication is especially for disabled people.

http://palsycorn.livejournal.com/2269.html

She is one of my dearest friends. We met on a Facebook support group for people with cerebral palsy. She is the creator and head moderator and she is amazing. She is studying Disabilities Studies in college, she adores SF/F and is writing several stories and at least one SF novel with disabled superheroes, and she is the reason I am so down with being a crip, cripple, "ceep", etc. I love her.

Quote:

"I am a multiply disabled person. Phone calls require a type of mental, physical, and emotional gymnastics for me, which I seldom, if ever, have the spoons for. I have severe phone anxiety which I smash down and stuff deep inside me when I absolutely have to make a phone call. The anxiety is managed somewhat with the help of scripts (particularly helpful if I have to call to make an appointment or something, I write down exactly what I'm going to say, and approximate what the other person is going to say), and has gotten slightly better since the advent of cell phones (that way, I know that no one other than the person I want to talk to will pick up). But it is still VERY there. On top of this, I have to smash a phone against my ear and fight not to drop it, something which I do with alarming frequency, because my hands do spazzy things. This phone, which is usually supremely uncomfortable, because no one considers how it's going to feel when it's held against an ear when they make a cell phone, will have to be nearly glued to my ear for however long the call takes, requiring my arm to be held in an awkward position for that long, which, like most things I do with my body these days, will result in pain. Finally, phone calls require communicating verbally, and like many people with CP, I find it exhausting to coordinate the muscles needed for speech and still make my words clear enough to be understood. Put that all together and you start to see why I feel like I've ran a marathon after a long phone call."

YUP.
brightrosefox: (Default)
'Reborn' by Laura Sava (anotherwanderer.deviantart.com/)
'Mirabella' by Rachel Anderson (www.silverstars.us/‎)

Two forms of my own story character, Asha Clara Night, my strongest, most individual, most personal fiction character.

These paintings. Completely different images that look almost exactly like incarnations of the same character of my own subconscious creation Women who look almost exactly like the dreamself I am becoming in my dreams and visions.

Laura-sava-Reborn

Rachel Anderson Mirabella


She was in my dreams last night and many nights before. I haven't decided exactly who she is yet, but in my dreams her name is Asha, meaning "desire, hope, hopeful; life; alive; she who lives." Which says so much, so so much.

She is another dreamself, not a spirit guardian, but much closer to my Self than my other characters (Alicia, Serena, Ananta: my spirit guardian coping mechanisms for epilepsy, memory loss, insomnia, sleep problems, [Alicia], chronic pain and fatigue, depression, anxiety, physical disabilities [Serena], neurology, neurodivergence, autism, total mind-body connection [Ananta].

Asha seems to represent many internal things about my emotions, my heart and mind, my rhyme and reason, my logic, my science, my creativeness and creativity, my power, my energy, my beauty. If she were to reveal herself as a guardian, she would be for emotional states, creative thoughts, desires, loves, patterns, ideas.
Asha is definitely powerful in a way I always wanted to be since childhood: Fae and and Elemental Mage and Neurodivergent and Autistic Witch and Quantum Magic Scientist and Story Crafter and Shape Shifter and Magic Librarian and Magic Keeper.

Asha seems to represent my deep, obsessive, compulsive wish and desire to be one of the psionic-mage superhumans in my stories, to take over for be when I feel failure and self-loathing and terror and panic. I think Asha may in fact be an actual entity, one who communicates outside instead of simply speaking into my visions, dreams, pain flare withdrawings, anxiety attacks.

All I know is that Asha was in every dream last night and throughout the past several sleeps, long detailed intense dreams, and she quoted Kosh. She spoke in a soprano version of my voice that could sing. She was always here She is always here. She has always been here.
I think she was with me since I was a baby. In different forms, in different species, with different names, in different imaginary beings, in different fictional characters. She was made of fire. She used to be a phoenix, a unicorn, a dragon, a star, a nebula. I know Asha. I know Asha in the way I hope to know myself.

The thing is, Asha has a fully active voice when I am completely conscious, aware, awake, functional, and stable. She didn't completely create herself, but she grew and evolved over my lifetime in her own way as a character in my subconscious. She took ideas I worked with and wove them into her personality, behavior, and mentality. My disabilities are hers. She stayed and changed and grew with me like a permanent piece of my spirit. Asha also represents my fluid sexuality - I often visit her in the place she calls home and we make love, representing my desires for love and orientation.

She lives with Alicia in the Wonderland cottage, but she freely moves about my brain more often. She shapeshifts into elemental energies, she moves around my hippocampus and amygdala and temporal lobes and cingulate gyrus and thalamus and auditory cortex and somatosensory cortex and parital lobe and the back of my brain.
She has altered the Wonderland cottage to be something else entirely, with three bedrooms, two bathrooms, two office rooms, a large entertainment living room, a large kitchen, a basement. The outside build would contain concrete, cement, hemp and limestone, bamboo, steel. The glass windows are shatterproof. The doors are hemp-lime and timber. That must say something about my mind's inner workings. Especially since the main reason for hemp being illegal is due to its threat to corporate patentable synthetic fibers and wood and paper product industries, while the medicinal drug potential became subject to false claims and fear mongering alarm campaigns until the original industrial potential became buried under the alarmist anti drug campaigns. Part of me probably knows how powerful this is. Medicine from nature itself and the human brain itself is usually denied and seen as worthless.

Asha represents that part of me that firmly supports the controversial balance of traditional pharmaceutical medicine and nontraditional botanical medicine.
Asha is my activism and advocacy. Asha is the fire that moves my belief in the combination of synthetic drugs and organic drugs. Asha is the phoenix in me that rises after every defeat, every failure, every attack, every oppression, every attack and assault on my truths and faiths.

Throughout many names, faces, back stories, lives, personalities, and individual growths... she has always been Asha Clara Night. And this is how she asked me to look so I could see that there is beauty deep and shining.

I must find and thank the artists for these images, since I found myself taking these pieces of artwork and subconsciously turning them into incarnations of my own fictional character.

https://www.facebook.com/photo.php?fbid=10151978626835684&l=17dde55bf4

Asha may well be the character in that second novel after all. It won't be this Asha, my Asha; just a version, a more humanized incarnation I can bring out to show the public. This excites me. She could help me write it, just by living in my mind.
brightrosefox: (Default)
Copied from Facebook, because it should be put here.
*
My neurologist is hilarious and awesome. And she thinks the same of me. We're gonna schedule a brain scan. And we traded quips and jokes about why the he'll I didn't get diagnosed autistic until last year. And she agreed that I am badly stressed and depressed for no reason and she desperately wants to help, and she wants to increase the Zoloft a bit to see what happens, and she's very pleased that the passion flower is helping me sleep, and she cares so much it makes me cry. She hugged me when we were done.
I told her that I feel like I'm on another planet with super caring doctors who really help, and she looked so empathetic and almost upset about the lack of such support. I heart you, Chang Ching Debbie Lin, super neurologist and friend to patients.
*
And here I thought they would take more blood. I must remember that the good veins are in my right arm. I'm impressed I was able to watch both arms being poked. That was a big needle.
*
And of course I tripped and fell flat on my knees and shins while walking through the grass. As I was using the cane to slowly get up, I heard a woman call out, and then a hand was on my arm. She asked me if I was okay, and asked if I was going to the bus stop across the street. When I said yes, she held my left arm and helped me the whole way and stayed until we were sure I was okay. Then she went back across. Funny thing was that we were right next to both the hospital and my primary physician office.
I'm home now, and both my legs are bruised, and I'm all stiff and annoyed. But the look of concern on the woman's face made me grateful that people care enough...
*

Indeed, it's never big things, never major or massive emergencies. It is just several little things, one after another or at the same time, building up day after day, never stopping.

Dr Lin Super Neurologist has written "chronic stress disorder" on the list (right next to intractable epilepsy, insomnia, cerebral palsy spastic ataxic, and myalgia as doctor-approved medical issues on that lab test print-out I took to the lab that took two vials of blood). When she had touched my shoulders, she had exclaimed, "Ohh, you're stressed. These muscles are far too tight, even for the cerebral palsy." We joked back and forth - I said, "You know those internet memes that tell you to think positive thoughts to eliminate stress? I hate those." And she said, "It's exactly like saying that the best way to treat a stress-related disease is to get rid of stress. Helpful, isn't it?" - and she was genuinely worried.
She gave me those physical tests where I had to push against her hands with my hands and legs, and my left side barely responded, and I watched her mouth turn down and her eyes fill with sympathy. When I said that my medications were working very well for what they had to work with, she was almost gleefully relieved. She does want me to see a psychiatrist, and she thinks increasing the Zoloft may help mitigate some stress with its ability to handle more than just depression and anxiety. She was happy to see me able to genuinely express my sense of humor, and she liked that I called my depression episodes "hollows". I truly feel better for having seen her and for scheduling the six-month follow-up. Brain scan ahoy.

I know so many people with intense diseases, disorders that must be monitored and treated with porcelain delicateness, with multiple medical conditions that leave doctors stunned and astounded that these patients are still alive. This is why I don't like to compare. This is why I hate playing games, even though sometimes I find myself pain-bragging without realizing. My small, numerous, chronic daily medical issues are nothing next to something as huge as, say, cancer or MS. But they are annoying.

These varied, various, multiple little pains and problems are indeed growing and they are quietly and slowly debilitating no matter how many Happy Thoughts tm I throw at them, and they will be with me for the rest of my life, and I will work with them and treat them as best as I possibly can, and I am doing my best to turn away from insistent voices that cry about magical panacea drugs/herbs/exercises and seek out whatever magic works for me, magic or not. And all I want to do is reach out and hold the hands of those who are being struck down with health problems no matter how many times they get back up, who get back up no matter how many times they are struck down, who just want to rest.
I just want to rest.
brightrosefox: (Default)
So... there is that whole thing about "I am having a medical depression episode, I am medically anxious, I am in severe a chronic pain fibromyalgia flare that rates an 8 on Allie Brosh's pain scale, my spasticity is out of control, my hypertonia along with ataxia is interfering with my ability to balance, I'm very dizzy, I'm in a mental fog, I keep thinking of how Rose-kitten died and I start getting choked up, my joints ache and throb so much that I want to become a cyborg right now..."

And I got back from a shopping trip to Barnes&Noble and Target. And Adam picked out a beautiful autumn/spring coat with purple/rose/yellow/brown patterns I never would have considered and it was gorgeous on me and on massive clearance, and Adam himself found a perfect back-up backpack on massive clearance. And I found several new books I've wanted to read including a new Amber Benson book and a new supernatural suburban fantasy series, plus a Pinkie Pie doll from the company Aurora, the same kind that sells Fluttershy on Amazon, with soft simple fabric for hair that was perfect for cats to play with.

And I spoke cheerfully and joyfully with strangers, smiling so much that my disguise and my mask strengthened, and I knew that I could make it through as long as the medications held up, the Soma and Klonopin and Ultram and Vinpocetine and Picamilon and MSM and Vitamin D and Guarana and coffee. People asked me where I got my gold-colored cane and why I had it... and were honestly intrigued to ask about the cerebral palsy, no condescending remarks, no inspiration porn, just requests for details and honest educated understanding. And I was happy to educate, explain, enlighten, and watch their faces light up as they thanked me sincerely and walked off with more information, and that is all I want from things like that.

And the medicines did as promised, and I came home and fell down by choice, and as a wise, wise woman with a PhD told me, It Is Okay To Not Be Okay.

I am not okay. And that is okay. Eventually, I will be okay.

Some quotes I would like to share on trauma and living with illness, disability, life after trauma:

1. "Healing is seasonal, not linear.
It is true that healing happens with time. But in the recovery wilderness, emotional healing looks less like a line and more like a wobbly figure-8. It’s perfectly common to get stuck in one stage for months, only to jump to another end entirely … only to find yourself back in the same old mud again next year.
Recovery lasts a long, long time. Expect seasons."

2. "Whatever doesn’t kill you …
In 2011, after a publically humiliating year, comedian Conan O’Brien gave students at Dartmouth College the following warning:
"Nietzsche famously said, 'Whatever doesn’t kill you makes you stronger.' … What he failed to stress is that it almost kills you.”
Odd things show up after a serious loss and creep into every corner of life: insatiable anxiety in places that used to bring you joy, detachment or frustration towards your closest companions, a deep distrust of love or presence or vulnerability.
There will be days when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.
… Doesn’t kill you.
Living through trauma may teach you resilience. It may help sustain you and others in times of crisis down the road. It may prompt humility. It may make for deeper seasons of joy. It may even make you stronger.
It also may not.
In the end, the hope of life after trauma is simply that you have life after trauma. The days, in their weird and varied richness, go on. So will you."

I chose these quotes because I have heard, over and over and over, "Oh, just get over it. Slap a bandage on it and walk it off. Are you still going on about that thing? It was years ago! Aren't you on medication and in therapy? Shouldn't you be past all that by now? Stop thinking about it so much; you're just making it worse. You're creating negativity in your own spiritual space. Negative emotions and negative thinking will destroy your immune system, you know. Stop stressing so much. I give up! You're hopeless! I can't even talk to you! You're a broken record! You're just making it worse. Why won't you listen to me? Every time you talk about getting worse, your mind and your body really believe it. Get over it! Think positively! Change your attitude! Do what I did! I quit thinking so much about the pain and trauma, and in a few months I was cured. I really think you need more positive thinking. You're bringing yourself down."

And the reason I have merely smiled, nodded, and replied, over and over, "Thank you; I shall consider that!" is because those people don't want to listen anymore, they just want me to stop talking, even though I just want to confide. And so I stopped confiding in them. It was a drain on my energy and time and it just made them irritated at me.

The point is that there is no straight line when it comes to trauma, pain, illness, damage, and negative life events. Some people will never seek treatment, and will continue to live in a post-traumatic stress cycle complete with angry outbursts, emotional breakdowns, and paranoia over things such as medical treatments. There is nothing I can do but be there, even if it is just as a voice to soothe, a hand to hold, a joke to tell, a distraction to offer.

But for me, everything is a cycle. I will never be free. I acknowledge that my entire life, literally, is, was, and will be about recovering from trauma. I have tools to work with. I have doctors who understand me. I have taken all my medical problems on with my own personal arsenal, and I know better than any of the people who dislike my methods how to work with, on, and despite myself. I have my girls, my spirit guardians, my coping mechanisms with human faces, the parts of my brain formed from fictional characters that allow me to handle different parts of my trauma. And so I keep going. Trauma is a part of my life. And that is okay.
brightrosefox: (Default)
[Originally posted in two disability forums and chronic pain groups]

I've realized that I may be the only person here who has stopped applying Spoons to myself. And there may have been some miscommunication or misunderstandings in other groups and forums. I am happy to call myself a spoonie and use spoons, but I use spears more.
I really wanted to explain why.
I'm totally happy with the Spoon Theory, but I decided to expand on it after a discussion with a friend who has almost thirty separate health conditions. So, I wanted to tell you all what I mean when I say Spears instead of Spoons. I'm linking to some of my blog posts that talk about my Spear Theory.

I know this is a lot of links, but they really explain why I use spears. I am still a spoonie! I do use spoons. But I also use spears. They just apply more intensely to me.

And then there is this!

http://internal-acceptance-movement.tumblr.com/post/61136577036

- I emailed the creator of this artwork, and she was incredibly flattered that her piece reflected the exact thing I feel about myself. It is so uncanny that I keep coming back to it in awe. Every time I look at it, every time I read it, I get chills.Ah, and here is email exchange between me and the author:"Hi Jenny!
I recently saw that extraordinary art about being your own hero in the face of chronic pain. A friend said, "This is your Spear Theory!" And it is. I was born with cerebral palsy and a host of issues including fibromyalgia, major depression, panic disorder, a spectrum disorder, and around two dozen separate diagnosed disabilities. I created The Spear Theory as an alternative to The Spoon Theory. I'd love to chat with you about it!
In fact, here is a note I wrote up about it... and isn't it amazing how well your art piece illustrates what is in my head when I think about my theory? Because I always imagine being outside in a forest, wrapping myself in bandages and armor, waiting outside my cave-like fortress for the Pain Monsters. [Note Attached}
-Joanna"


"Joanna,
That's so amazing. I love that. I love it so much, and I love how it instills more of a self-empowering connotation to the situation than the Spoon Theory (which still stands as a strong theory, but the connotation differs greatly, I'd like to think!) It's so funny how my comic like, pretty much EXACTLY depicted your Spear Theory! The universe is crazy sometimes, I swear.
And thanks so much for sharing with me your story and experiences. To be honest, I didn't even know about the Spoon Theory prior to this e-mail and its ties to fibromyalgia, so thank you for enlightening me.
You're such a strong soul and individual, I can already see that just from reading your livejournal posts. I don't even know you personally!
Keep being beautiful, okay? Keep writing, keep sharing your experiences.
I only wish I had half the courage you have to face the day from a day-to-day basis.
Much love,
Jenny"

The fact that she hadn't even known about the Spoon Theory and had described the Spear Theory so well was also impressive in a very Jungian way.
Here are my blog posts tagged with the tag 'spears'. Feel free to browse.

http://brightlotusmoon.livejournal.com/1473230.html (the entry that started it all with my friend; aka "The Genesis Of The Spear Theory. Hi, Mandi!)
http://brightlotusmoon.livejournal.com/1520669.html
http://brightlotusmoon.livejournal.com/1571702.html
http://brightlotusmoon.livejournal.com/1565840.html
http://brightlotusmoon.livejournal.com/1565955.html
http://brightlotusmoon.livejournal.com/1555991.html

[Also, I had to save this somewhere...]
brightrosefox: (Default)
The Facebook status post that started it all. Read the comments. They are extraordinary.
https://www.facebook.com/BrightLotusMoon/posts/10151585193220684

So, lately I have been seeing a whole bunch of bizarre, confusing Internet Things about Finding A Cure For Cerebral Palsy, in the same fashion of Finding A Cure For Autism.
What is even worse is that I see people trying to compare autism to cancer when talking about cures, which is so fucked up I have no words.
So, as a person with cerebral palsy and various other disabilities, including one that shares similarities with autism, I have thinky thoughts.
(And no, Fibromyalgia is not included in this, since it is a different rant entirely, so I will not bring it up. I am only and specifically going to talk about Cerebral Palsy and Autism Spectrum Disorders here, which I cannot and will not compare to conditions like epilepsy or diabetes or autoimmune diseases or such.)

This is what I find so funny about people who yell about finding a cure for neurological conditions like autism and cerebral palsy. A "cure" generally means wiping out or eradicating a harmful disease. *checks self* Except that I'm not dying. All the autistic and cerebral palsy-affected friends I have aren't dying. I know this is weird logic. I know that "cure" has many other definitions. But I don't have a disease and I don't want a cure.
When someone says, "There must be a cure, [condition] is terrible, just ask [my friends with disabled kids who are having issues interacting]!"... I have to wonder, do they want the cure for the disabled people, or do they want the cure for themselves, so they can breathe easier knowing that the disabled people will fit cleanly into a neurotypical world? Oh, I know, I am going to incite some anger here.

I've seen how hard and horrifying it can be for families of autistic people and people with cerebral palsy when the families have no idea what to do and feel helpless and hopeless. I have cerebral palsy, I have family and friends with cerebral palsy, and I have several cousins and many friends with autism. But the old argument of "Just ask So-And-So whose child will never talk, etc" does nothing to tug at my heartstrings. I find it to be a very weak argument.
Yes, disabilities suck. Disabilities are fucking hard. They eat away at you. They fill you with guilt and worry and fear. But you know what? I'm not dying. I am strong as hell. I am hardcore. And this disability that people seem to fear and hate? It has given me some specifically amazing, beautiful perspectives on the world that I'm not sure those people have.

Let's ask the actual disabled people if they want cures. Come on, ask us.
Many of us might actually say yes. Many of us might firmly say no. Many people might decide they want to be treated or "improved" just enough to be able to interact better, walk better, have thorough conversations, etc. If they want cures, awesome. If they don't, awesome. But I feel as though certain charities and groups championing to "wipe out Insert Disability Here don't often take into account the actual opinions of the majority of people with those disabilities. Because yes, while it is all we have ever known and a cure may make us feel better, it would also remove a core part of who we are, something so hard-wired into our brains that we live and work with it in a sort of surreal harmony. We may bitch about symptoms, we will get pissed off at ourselves, we will lash out on bad days. Eradicating that entire condition may make it seem as though we would be better off, happier, easier to be around. But we don't know that. What if we don't like it? I don't know. Nobody knows.
In the end, we have our own voices, and it has become apparent that we need to start drowning out the voices of people who don't understand us enough from the inside. I am speaking out. I don't want to be cured from any of my disabilities. Treated, yes. Slowly healed to make myself function better, yes. Able to fully manage symptoms, yes. But a cure? An absolute cure? No thank you.

And remember: Having a cure as an option for everything would be awesome. But I refuse to tolerate it being forced upon someone or used as a soapbox for someone's rant as to why it should be given to everyone even if they don't want it.

And those are my thinky thoughts.

/I hate writing controversial posts like this, but, well, nobody I know right now wants to actually be cured. Show me some disabled people who personally want a real honest cure, and then I'll say, "Okay, awesome! Let's start scienceing! Let's get to work! Then we can have the option! Yay science!" I'm open to everything. Just not being told that my disability absolutely needs a cure for the sake of the people who are not disabled.

Also, I must copy a comment a friend on my Facebook that made me melt:
"And this is why you are one of my favorite disability advocates, because no one else calls those kind of campaigns what they are: patronizing. Well meaning, but patronizing. As a fairly high-functioning Aspie, and someone who's dealt severe OCD, anxiety and depression as long as I can remember, I would not take a magic pill that eliminated my experience with these disorders for a million dollars. Yes, the symptoms suck and I have and will continue to manage them with a combination of holistic and allopathic treatment options, but to completely erase them? No. Each one has shaped who I am, and I happen to like that person. Thank you for voicing this."

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