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)
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...
brightlotusmoon: (Asha)
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.

New Friends

May. 2nd, 2014 12:07 am
brightlotusmoon: (Asha)
Hallo, new friends. I've been friended by a bunch of people in the past couple of weeks. Could those new friends step forward and comment on how they found me, why they friended me, and if we'd met in another online media or forum? Because, you know, memory problems. If we met on Facebook, can you tell me your name, or at least part of your Facebook name? Cool.
brightlotusmoon: (Asha)
So! I did a thing a while back. I didn't tell anyone. Anyone at all. And now it is time to come clean, because it's been long enough that I think I can finally shoot down the pushers.

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

The results were...

Wait for it...

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

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

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

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

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

Ahh, humanity. Fun!
brightlotusmoon: (Magic Goddesses Mix)
Well, when people ask me how I manage being married to someone whose work involves constant traveling around the country and occasionally to other countries for many days at a time, I apply a quote from Captain Awkward:

"...day to day during their separations the most they ever had to go on was “If we both survive this, I promise to try really hard to still love you” because that’s all anyone has ever had to go on."

This quote was applied to her grandparents while her grandfather was in the military and this far more intense than working across the country for two weeks. However, it applies to many, many things. It applies to couples of any status going through, well, anything.

Actually, my ultimate favorite was always from "The Princess Bride" (both book and film). You know, the scene in which Westley wanted to first make money across the sea so he could marry Buttercup properly: "Hear this now: I will always come for you." And much later, upon meeting with Buttercup after his supposed death and her arranged marriage: "Death cannot stop true love. What it can do is delay it for a while."

Years ago, my husband wrote, in soap, on the bedroom mirror "I will always come for you" and drew a long-stemmed rose alongside. It will be there until the mirror goes away.

That's the core. That's the cornerstone. "I will always come for you." He will always come back to me. When he was working outside the country for two straight weeks, when it was too expensive to call, he would arrange video chats via cell phone, preceded by a quick text; luckily we were in the same time zone this time. Even if we can't communicate for a while, we know we will be reunited soon enough.

The result is good money for bills and food and necessities and small luxuries, and his travel is worth that. Since I am disabled and literally, officially unable to work by government standards, earning a bit of Social Security Disability Insurance monthly, it is up to him to make the bulk of the payments - and we are unbelievably lucky and grateful to have a tiny mortgage and small bills and are surrounded by nearly a dozen varied food markets, shops, and stores that I, unable to drive, can access by public transport. We make sure to stock up on things I and our three cats will need for however long he will be out of the state. I am lucky that my disabilities don't hinder me from getting around, doing some light shopping, cleaning the house poorly, etc. I'm very introverted and very good at being my own company while he's gone.

We are aware of the privileges we have and don't have with this life, and that is important. It's very easy to say, "It could be worse..." but it's an overused phrase for me. We have our problems and issues and near-misses (traveling as an IT/AV technician sometimes means getting injured, getting damaged, or just missing a fatal injury; arguments happen all the time and are quickly resolved because we hate fighting; no doctor appointments set until we know when he has time, etc). We do everything every other couple does, just often at a distance.

And you know, we started out at the very end of the 20th century. All we had were house phones, simple emails, simple instant messaging. We didn't get cell phones until we were already living together. Social media was barely more than blog posts and message forums. We've been doing this for so long that we're experts and pros. And yet... I still really don't know what to tell people. Because I can only explain what works for the two of us, which might not work for others.

I will admit that I do still roll my eyes when someone cries because their partner will be away for "a day or two" - particularly if it seems dramatic. I absolutely bite my tongue and resist that urge to play the Suffering Olympics, because I'm a jerk like everyone else and I'll be judgmental. But I will sympathize and empathize deeply enough to care about their concerns. Because you don't know what will happen.

And so, to the people I forgot to respond to in the first place, here is your answer: I still don't know how I make this work. It's a long distance marriage born out of a long distance relationship. It works because we were friends and will always be friends. It works because I am amenable and casual and I like being alone and he likes traveling and his work and adventuring, and we love each other and we like each other so much that we just... know. You just know. You know? I guess?

I'm sorry that got so vague and incoherent near the end, but I cannot explain it much better. It's a thing you have to work out and work at. You have to know, feel, and understand yourself and your partner; you have to completely commit to knowing that plans will change constantly and you will be sleeping alone for a week. You have to want this life. I think a huge part of it might be never taking the relationship for granted. Not the love, not the like, not the good days, not the bad days. And I mean, really meaning it. Also, saying "I love you" as much as possible always helps.
brightlotusmoon: (Asha)
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.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
You guys, you guys, Cara's post is going viral in all the right places on Facebook! And Tumblr. And other blog places. Like, holyshit, she's slowly getting famous in disability circles. I love you, Caraboo!
(BTW, Cara is a young woman with spastic cerebral palsy who created a private Facebook group for people with cerebral palsy that has exploded with hundreds of members. I have made so many friends just from there. Cara also supports people with autism, fibromyalgia, depression, anxiety, all sorts of neurodiverse issues, and is generally a fantastic, truly wonderful human.)

http://thatcrazycrippledchick.blogspot.com/2013/12/this-is-what-disability-binarism-looks.html

My additional comment:

Many times, I don't use a cane to walk those twenty minutes to the grocery store or pharmacy. "Oh!" they say. "You don't have your cane! You must be feeling better!" I honestly don't see that as insulting or offensive, just simply confusing. Usually it just means I forgot the cane. I still limp everywhere.
Also, if I, at a height of four-ten, am struggling to reach a product on a high top shelf, and nobody stops to help and I need to hunt someone down to ask for help, it doesn't mean people can ignore me. I'm not creepy am I? Or worse, when there's a tall person right there in the aisle, catching me out of the corner of their eye... did you know there is a huge difference between me with a cane and me without a cane? Help comes much faster with the cane. That still confuses me. I'm still four feet ten inches. I'm still struggling to reach that shelf.
TLDR, still confused over how people react and act to physically disabled people with and without direct use of mobility aids, yada yada.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
I had so much amazing sushi it was amazing. I watched with amusement as one friend requested lobster miso and got, literally, a bowl of miso with a lobster claw in it... in the shell, and no tools save for chopsticks. I wanted more sushi, and they let me have more sushi because I fucking could, oh my gods, even the waitress was impressed.
I walked around a shopping area at night with friends and I didn't have a cane and it was all fine, and I socialized easily with four good good people, and when I woke up in the late morning, I hurt so badly that the only way I could get out of bed and walk anywhere, say, to the bathroom, was to put myself back into a half-asleep state.

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

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

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

Anyway. Sushi makes things better. Lots and lots of sushi. Lots. Sushi.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
Because I'm always the fucked up, mentally bizarre, clumsy, twitchy screwy fool who never gets it right, and even when I try to make it better I do such a poor job it needs to be fixed again and again. Some people call it cute and endearing, some people call it stupid self absorbed insanity. I keep trying. I don't even know. I'm tired of people telling me what I should do just because they want me to. Advice and suggestions are awesome. Pushy preachy sanctimony is awful. And even if I don't do it the way people want me to, at least I'm doing it the best ways I know how.

My best beloved cat is ashes in a box because I waited too long; my floors are never clean enough; I watch the same television shows and movies and read the same books over and over for pure comfort and joy; my memory is disintegrating and the only reason I remember anything specific is because I cheat; I want my friends to be okay with each other; I want to talk about things that confuse and fascinate me which include my disabilities; I collect current My Little Pony toys; I just want people to realize that my autism has a name and they can use it without assuming I'm begging for attention, same thing with my aging cerebral palsy and fibromyalgia; I want people to stop insisting I do yoga and to stop insisting I quit eating wheat or dairy when I don't need to, I can't go vegan, I hate tofu and my body can't handle it, I can exercise all on my own;my drugs, supplements, and therapy sessions are working exactly as well as they should be and I twitch when any of them are attacked by people who don't understand; sometimes I actually do physically feel like an old woman and it is absolutely not ever because I am somehow conjuring it or desiring with magical thinking like in that book about law of attraction with pure belief, and if someone really thinks that kind of awful thing about me, then they seriously need to realize that I do not think like them and never will, and they cannot change that.
I am just me, and as I grow and change it will be me, myself, with bits and pieces of suggestions that I will keep and discard as I grow.

I have no fucking clue what made me write this out. Frustration, upset, irritation.
Feel free to pick it apart or ignore it. Just don't trash my medications or doctors, because in that aspect I am doing just fine. Just... this isn't even "vague posting" or "cryptic posting"... I just needed to release something. Social media like this may not be the best place, but by gods, I have so many people on my feed and friend list who understand and are in a similar place. This is for them.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)

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

 

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

 

I believe her middle name should be Serenity.

 

I think she knows who Rose is...







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

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









The house of Rose's soul.
Oh sweet Bast, please love Rose and care for her. Give her sweet cuddles and nuzzles and kisses. And give her as many treats as she wants.
With Adam Paul, the sculptor.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch Light)
I'm too much in shock and too tired, so I am copying from Facebook.

Yesterday Part 1.
I don't think I'm having a nightmare. But if I am, I just want to do something to make Rose stop panting rapidly and lethargically with wide pupils and mild legarthy. It is four in the morning. I have no car. I could call a taxi service to take us to the Nebel Street emergency clinic but I can't think straight. Maybe she is having a cat anxiety attack. Maybe it's nothing. Maybe it's nothing. I will stay awake for her. I will offer her treats. I will remain calm because Klonopin is in me and I cannot panic. She is letting me cuddle her. Maybe it's nothing. I need it to be nothing. It's four in the morning and I can't drive and I can't find a carrier and vets don't make house calls. I need this to be nothing. Bast, please let Rose be fine. I will stay awake.

Yesterday Part 2.
Okay. Rose is okay. I mean... well, she did turn down Greenies, which never happens, which means she may not be hungry or is just very tired. When I pressed my ear to her side, I didn't hear anything unusual, just breathing and purring. But she also turned down water and food, which makes me concerned. Her nose is dark... is that a thing? I mean, it's not that 'normal' bright pink flush. She is also acting physically weak - when I picked her up she went limp, and when I put her on the dresser with the food and water bowls she looked almost depressed. She then jumped off and lay on the floor and mewed. I think it's allergies or maybe the start of a cold. She is absolutely lethargic. There isn't much I can do right now - I don't want to rush her to a vet right now just out of worry. She's breathing fine. Adam won't be home until tomorrow, though.

Today Part 1.
As soon as Adam gets home we are rushing Rose to the VCA emergency clinic on Perry Parkway. FYI. Her breathing troubles are much worse.

Today Part 2.
Rose Sunshine Paul.
Time of death: 2:20 PM December 14 2013. VCA Veterinary Referral Associates.
My cat died of heart failure caused by liquid around the heart and lungs.

Today Part 3.
Rose Sunshine Paul.
April 2008 to December 2013. Confirmed cause of death: fluid around the heart and lungs. Heart attack and shock.

At the Gaithersburg VCA Veterinary Referral Associates, the closest pet emergency hospital, the one we have been going to for years since its Darnestown location... they called in every single doctor and nurse into the ICU since Rose was already severely critical. They did everything possible to stabilize her even through the Code Blue. A dozen veterinary specialists for one little cat. They spent 15 minutes on resuscitation. Dr. Marc led us to the comfort room and said there was nothing else to ben done. Let me stress that every single doctor was in that room working to save our cat.
We opted for a private cremation. Just like Tuesday and Ralph and Puff, with polished wood boxes and name plates and clay discs with paw prints. These people were wonderful.
Rose died knowing she was dearly loved. She knew how intensely we cherished her. She loved us with every part of her soul. We were tribe.

Adam and I held her in the towels and hugged her body, and Adam absorbed her soul. At home, he transferred Rose to the sculpture he had made, with gold and cream paint. Rose as a soul will always be with us.





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

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

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

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

Speaking of scent, Adam got me a bottle of perfume during his Las Vegas job trip a couple of months ago - Nude by Rihanna ("Fruity aromas of guava, mandarin and pear are located at the opening of the composition. The heart is blended out of white flowers: gardenia petals, velvety Sambac jasmine and creamy orange blossom. The base consists of sandalwood, vanilla orchid and "second skin" musk."). We both love it on me. Sweet and soft and floral and deep. Now I really want Killer Queen by Katy Perry because it is a fruit and flower explosion ("Top notes include wild berries, dark plum and bergamot accords. The main note of the heart is velvety red flower, Celosia, but there are also Sambac jasmine and rainbow plumeria. The base contains cashmere, patchouli and liquid praline"). Oh, indeed.
My personal signature scent, created via Etsy, called Moonlight Witch, consists of real pure extracts Amber, Blue Lotus, Dragon's Blood, Coffee, Chocolate, Green Tea, Coconut, Frankincense, Myrrh, Blood Orange... but I do love exploring various notes and scents when I can.
brightlotusmoon: (Snow White Ruby Blood Dragon Witch)
I randomly swam through my bedroom closet and found some house slippers and coats. I wish I had waited until my neck and skull muscles had relaxed and loosened enough, but oh well. Winter coats! I almost curled up in the closet for a nap. The thing about OCD (true and evil, not the icky "fake tee hee OCD") is that I know I am insane and that I need to help myself, but the compulsions just keep slamming me down. Which means I need to do this bit by bit. Minute by minute literally. Coat. Purse. Shoe. Matching shoe. Large black trash bag for charity. You know how it is. Even the panic moments. And then the ADD SHINY. I think the biggest bone of contention between me and my spouse is my extreme messiness. I admit it. But oh, that closet is comfy, and I essentially know where things are. After I flop like a child in a ball pit. Stimming! Oh my gods. It's stimming! What. I. Didn't even. Huh.
Should... should I... can I call myself autistic? Officially? Or should I keep calling myself borderline autistic? I don't knoooow. I don't care what people think, that's not the point. The word "hypochondriac" just makes me laugh and wave my hand in a Feh Motion.
Oh, the coats. The sweet comfortable winter coats. And hangers! I found hangers! I shall obsessively put the two things together all over the house, because I spaz ridiculously in winter and the Raynaud's Disease is sheer torture.
I am flapping and hopping from one foot to the other and making "Whee" sounds because I am organizing in a Joanna fashion. Oh my gods, I really am on the spectrum. How did I not know? This changes absolutely nothing on the outside. Inside my mind, though... Wonderland has opened a whole new portal.
So, an autistic friend asked me, "Does the word Autistic feel right? Cuz I sure as shit am not going to tell someone they 'aren't autistic enough' to ID as Autistic. And it's a culture, not just a dx. And I could have written this. Especially the compulsive going through the closet god I have no business doing this my body is saying HA HA FUCK YOU thing."
And I replied, cautiously, "...yeah, the word Autistic feels right. Yeah. And the culture thing also feels right. I think the only reason I've been hesitating is because everyone who knows me knows I already have so many medical issues that this is just one more issue to put on my doctor list - and some people might accuse me of "collecting medical conditions like stamps" to which I take annoyed offense. Not my fault my brain is screwy. I have Things in my brain. It is important to know what All The Things are. I've given up on the closet so far. Like, truly, NOPE. But it is still there, waiting to love me. So yeah."

Yeah, I'm happy. I've had some friends from CP groups, epilepsy groups, autism groups, and fibromyalgia groups inform me that my consistent posting about what I go through is helping them learn more and more about themselves. It turns out that I am becoming a role model. People are thrilled to see that I am so open, honest, willing to reach out and connect and share what I know.

-"You make me feel better when I worry about what is happening to me."
-"I love talking with you because you don't care about all the horrible stuff, you just want to know who I am."
-"Thank you for accepting me and talking to me. You're one of the few online people I feel like I can chat with and not feel rejected."
-"I'm so amazed and impressed by you. You are devastatingly intelligent and beautiful, you never let your disabilities completely overwhelm you, and you are able to reach out and ask for help when things get rough. You inspire me to be a better person."
-"You are so genuine and open. You really want to help people. You don't want to play a character on the internet. You're so refreshing and generous."
-"You have this strength that I've never seen. You can be in insane amounts of pain that would bring any man to his knees and you smile and raise your head and you keep going. You never lie - you say how you feel but you also temper all that pain and hell with beautiful, positive things."
-"You're one of my favorite disability advocates. You're like an idol. You don't hold back. You have almost two dozen medical conditions, and you are happy to talk about them, and you also know when to tone it down. You don't give a fuck when someone is angry at you. I want to do the same thing. Keep being you."
-"I love your power. I love your voice. I love your entire mind. I love how you approach every new medical issue with grace and understanding. I love that you can joke and laugh even when you are sobbing and struggling through the worst of depression and panic. I love that you refuse to project false positivity that you don't let true negativity destroy you. You shine like a beacon in the night. You, as a spiritual being, are extraordinary. You, as a disabled human, are beyond extraordinary."

And here is the funny thing: I do not believe in myself. I do not feel beautiful or inspirational or intelligent or confident. I KNOW all of this. I am very rational. I know, intellectually, that all these things are true. But emotionally, I am shy and scared and worried and upset and not at all confident, and I don't like myself enough to believe. I don't fish for compliments, because on an emotional level I don't want to cry, "Tell me I'm pretty! Tell me I'm awesome!" I know I'm pretty, and I know I'm awesome. But feeling it and believing it is another level of comprehension. You know? You know.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
Oh, hey, my long lost theme song.

http://www.youtube.com/embed/Wmd60Kk9Ljk

Gracefully she's circling higher
She has the wind beneath her wings
And looks down on us, she said

Robbed of my innocence
Had no more time to play
I sure got my feathers burned
But I'm stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Eternity is set in her eyes
Throwing sparks back at the world
That'll never die and I think

She was robbed of her innocence
Had no more time to play
She's only a little girl
But she's stronger than the flames

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

Here she comes, I've been waiting
For my little phoenix

You've got to get close to the flame
To see what it's made of
You've got to get close to the flame
To see what you are made of

Here she comes, here she comes
I've been waiting for so long
Here she comes, rose again from the flames
My little phoenix

***

This reminds me, fascinatingly, of chronic pain, invisible illness, mental illness, disability, and the struggles of marginalization for a bodymind that is full of monsters.

http://www.youtube.com/embed/yxPMc-XWOZ8

Phantom voices with no words to follow
At the mercy of the cold and hollow
I withdrew into my sanctuary of silence
My defense

In this moment I am just becoming
Liberated from my cell of nothing
No sensation there was only breathing
Overcome oblivion

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

Waves of melodies once forgotten
Like a symphony across the ocean
Never knew that they could hear my calling
Deep within
Crashing in
Rushing in
Like falling

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

There is no returning to that emptiness,
Loneliness
The dream that lives inside of me
Won't fade away, it's wide awake

Falling Awake
From a walking sleep
And all that remains
Is the dying memory
And now I can dive for
These dreams I make
Like I am Falling
I am falling awake

***

And this one, same thing:

http://www.youtube.com/watch?v=vdG3ECUC-mE

Whenever I wake up
I'm lost and always afraid
It's never the same place
I close my eyes to escape
The walls around me

And I drift away
Inside the silence
Overtakes the Pain
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

Whenever I wake up
The shards of us cut within
Always the same day
Frozen all in the fringe
I surrender to the sleep
And leave the hurt behind me
There's no death to fear
In my dreams

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

So far or right beside me
So close but they can't find me
Slowly, time forgets me
I'm lonely, only dreaming

I feel Immortal
I am not scared
No, I am not scared
I feel immortal
When I am there
When I am there

***

And for my new friends in disability and invisible illness, I present my number one theme song.

http://www.youtube.com/watch?v=SJnCHctOeJg

Smash glass against the wall
Curse the music on the radio that the neighbours play.
Door slams, she turns her head
Watches through the window as he pulls away
Funny how your racing brain drives you so mad
When all the while you feel so numb
Too old to be clean far too young to be broken
Like an army we come

Cut back, left behind
I watched you self-destructing oh so many times
Shot down, once again
Sitting in a chair crying what am I going to do with my life?
Just learn to hide the way that you really feel
Never let them know that you're scared
But understand that you're not the special only one
Watch us now, watch us real close

How we all dance with this fire 'cause it's all that we know
And as the spotlight turns toward us, we all try our best to show
We are lost we are freaks, we are crippled, we are weak
We are the heirs, we are the true heirs, to all the world

Let's go build a fire down on the empty beach when the waves are crashing high
White heat purify, as the sparks fly up into the great black sky
Sacrifice these crutches to the crackling flames
Stand as silhouettes against the dawn
It's far too late to try to sleep now, seems I'm never tired any more

I want to dance with this fire 'cause it's all that I know
We are lost we are freaks
And we try our best to show
I am lost
I'm a freak ha ha.

***

Depression Monster is still wrapped around me, steel claws and silver grin, but I am fighting and fighting, and I have many spears.

Husband returned from New Orleans around one-thirty this morning. Rose and Jupiter immediately climbed on him and we all fell asleep in a snuggling pile.
Later today, errands! Petco Unleashed with coupons for Blue food and litter. Trader Joe's for cookies, whole milk yogurt, chocolate hemp powder, trail mix, pumpkin cereal bars, fairytale pumpkins. Dollar Store for calendars. H-Mart for produce and foods from outside North America.
Had a lovely chat near the with from a guy who was from Jamaica, who extolled the virtues of awesome iron-rich burro bananas and said that his grandmother, who ate them every day on The Island, was 130. She probably did lots of things. The man himself looked barely 40 but he could have been 50. I asked him which bunches of burro bananas looked best. Yay, snacks.
And we got a pure honey nut spread, roasted seaweed snack packs, tamarind paste, demerara sugar (4 lbs for under 5 bucks), black plums, pomegranates, red leaf lettuce, and stuff I forget now.
I have taken more medication to ease this pain, I have meditated with cartoon comedy to beat back the Depression Monster, and I now will get back to writing.
brightlotusmoon: (Pixie Model 1)
I just realized that I haven't posted in a while, not here. Busy, I guess, reading all those books I haven't read. Damn Kindle devices and all that. Over the weekend, my college best friends came for a visit, the first time since 2001, and it was fantastic. In DC, at the the Smithsonian Museum of American History, I got a wheelchair from security, and Tish and Rin were happy to push me around. The Spy Museum, The Cooking exhibit, the Golden Books exhibit, even the gift shop (at which I bought a Military Space Pen and a copy of The Shy Little Kitten from Little Golden Books, and also a stainless steel water bottle with ninjas on, and a coffee tumbler with kisses and femme fatale quotes on).

Rin taught me about cold-brew coffee, and now I am all about it. Yesterday, I left the French Press brewing from seven at night to eleven in the morning, and today I set it up at seven again... I will probably let it sit until ten or eleven tomorrow morning. I am still astounded by the smoothness, the lack of acidity. It still needs chocolate and sugar (cocoa, maple syrup or honey or palm sugar, cream or whole milk) but I am extremely impressed. Cold brewing overnight in a French press, for around 15 hours or so, makes me happy. And when husband wants his hot coffee, we can empty the press and refill it with boiled water over more grounds - or he can use the espresso maker. Lovely.

Coffee is great! Coffee is great! Coffee Coffee Coffee Coffee Coffee... -ahem. Sorry, that was Bender with Fry in the background.

We went shopping, as well, and at Sephora in Chevy Chase I purchased my new currently favorite red lipstick: BareEscentuals BareMinerals Marvelous Moxie Lipstick in "Call the Shots" - the website called it a 'rich scarlet' and it really is. A lovely dark pomegranate neutral red. The formula contains many moisturizing oils and peptides, which of course always matters. Call The Shots is very similar to my beloved BareEscentuals Buxom Full Bodied Lipstick in Provocateur, a true red with pink tones, but the Moxie lipstick has less pink.

We ate Belgian waffles with cream and strawberries, washed down with strong lattes. At home, my cats loved them constantly. When they left on Monday morning, I had happy tears in my eyes.

A migraine plus a tension headache and sinus pressure has been slamming into me since Monday. Today, at my pain specialist appointment, when I told the nurse about it, she grinned and said, "So, everything is fine and normal, huh?" and we laughed.

Ah, my head.
brightlotusmoon: (Snow White Blood Red Light Pale)
I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

*****
From: [livejournal.com profile] naamah_darling.
I don't know if I can explain it, any more than I can explain why I find anyone amazing, but you're open about what you are and what you are going through. You don't expend energy trying to be normal, and you never seem to even want to. You aren't afraid of what you ARE, even when the things that HAPPEN, sometimes because of things that you are, are scary. You seem sometimes scared of things that happen or that you (body/chemistry) do to you, but not scared of yourself, really. You're fierce. You're . . . we don't have a word for it. The way in which children and animals are alike, that we *call* innocence, but isn't innocence, it's just a kind of transparency and guilelessness-without-cluelessness. You're contradictory, and this isn't a problem. You've imposed . . . not order . . . but some sort of reason and meaning and story on the chaos in your life, and you have made beautiful things out of it inside you. You persist. You change, you are not destroyed. You're mercurial, joyful in the sense of being flat-out at everything you feel and not in the sense of being always happy, you're generous, you're very kind, you're forgiving. You aren't afraid to spend a lot of time working with and understanding yourself, because you know that is important. You are more people than just-the-one-you you. You are comfortable working with shape and meaning and color, when words aren't good enough. Whole parts of you are indescribable. You're a *good person*, while still being strong and fierce, and that is overwhelmingly obvious to anyone with half a synapse. You belong in fairy tales, like so many of the rest of us, writing better endings. You're kind of amazing.

And tangentially, THAT is why when people are all like "disabled people are so inspirational!" I get kinda pissed on the grounds of "THESE PEOPLE THAT I KNOW, they are SO MUCH MORE than a stepping stone for your ego or a friendly reassurance that hey, if those people can manage to get themselves to a beach/a gym/on a horse, you have a good chance of not being an utter asshole failure your entire life, and accomplishing REALLY important things!" and at the same time am like "No, really, we ARE inspirational; you have no fucking idea how 'inspirational' the disabled folks I know are . . . and if you had one iota of their self-awareness you might not be saying such asinine crap."
You want to find disabled people "inspirational?" I'll accept that . . . if what you are finding "inspirational" is their honesty in speaking out and sharing their opinions, their desire to help others, their weapons-grade swearing vocabulary (so many disabled people I know HAVE THAT, it's glorious), their ability to incorporate something literally disabling into their self-image and life when our culture gives them limited scripts and limited opportunities, their persistence in navigating the obstacles placed in front of them not by what they are, but by how our culture and the many dickheads in it unwittingly and often VERY DELIBERATELY make it harder to do so, the fact that they are often poor as dirt but are the most generous people you will ever meet, that they have known pain and so they often know great compassion.

*THAT* SHIT IS INSPIRATIONAL.

So is persistence, yes, which is why I am always impressed when I see someone who has had to deal with major issues accomplish something that is made particularly difficult BY those issues SPECIFICALLY, but when that sort of thing is nearly always ONLY praised in the context of visible, physical disability, or when it's some completely unrelated shit, that pisses me off.

It's like . . . people are apparently impressed by when disabled people do anything *while smiling*, because that indicates the triumph of overcoming our miserable existence? Or that we have a good enough attitude to forget, for a moment, that we are fucked up and are supposed to be miserable constantly? I don't even KNOW. But these same people aren't finding me inspirational when I'm at my blackest and am hanging on by my last claw, which is arguably when I am being my MOST BADASS. That's when I need to be pulling up my bootstraps and thinking my way out of it with sunshine and baby kisses. But an ungroomed, exhausted, surrounded by laundry, not moving, fat, blotchy, cat-strewn DEPRESSED person staring at a computer screen or TV or at nothing in particular doesn't look good in a facebook picture. "This person: probably exercising more willpower not to give up hope and eat a bullet than you will exercise at any point in your whole life. Stop. Bitching. That. Your. Yoga. Is. Hard." <---- Nobody wants that. (And, while maybe sometimes true, it's also kinda dickly, because Suck Olympics are uncool. The things that have made me most miserable sometimes do not seem to be proportional or make sense. To wit, the hour-long crying jag I had when my last pet scorpion died, years ago. Dude, I cried less painfully when my GRANDMOTHER died. What even the HELL?)

All I know is that the shit people usually talk about as being inspirational is not really very inspirational to me. Like, *if* it's true that Chris Evans really does have anxiety/panic attacks (never read reliable info about how severe his "problems with anxiety" are, though he apparently went into therapy) and he still navigated two MONSTROUS blockbuster movies and associated press events, I find that totally fucking impressive, because I KNOW WHAT THAT IS LIKE, and I know I couldn't handle it. And that's the stuff people don't seem to understand. That's the stuff people latch on to and *make fun of.* Because people who don't Get It can be real dicks about that stuff.
*****
I truly believe that if Namaah and I lived closer, we would see each other several times a week and never get tired of each other's company.
My husband once told me that everyone has multiple soulmates, that a soul can be split into many different parts. I think Namaah may be one of my soulmates. It took me five years to realize that, and that's okay. I like to take things slowly.

Lights.

Jun. 8th, 2013 10:03 pm
brightlotusmoon: (Snow White Blood Red Light Pale)
The thing about brains is... brains are so complicated. Brains are so complex. Brains need outlets, too. Words are good enough for my brain. I just want to feel safe when I say words out loud. All I've wanted to do was help people. To say, in public, loudly, "You have someone who will listen. You have someone who understands. You have someone who knows what it means. You have someone who will hold you through the worst of the darkness. You have someone who will always shine brighter than any light." Ever since I was a teenager, I was told that I radiated a pure sort of light that drew other minds close. And every time someone who has never seen that light tells me that I'm causing upset or wrongness, that light falters, because how could someone slap me across the face just because I want to speak out through the darkness? I will never stop speaking out through the darkness. I don't care what it costs anymore. I will talk about my brain and its ultimate complications and complexities and sicknesses and handicaps, and somewhere, someone will always be listening. And they will talk about their brains, and we will share our stories, because that is how stories begin.
"Once upon a time, there was a warrior princess born with invisible armor to battle all the damage inside her that would follow her for the rest of her life. For a long long time, there was nobody she could talk to who truly understood. And then, suddenly, there were dozens of people who could understand. And the warrior made it a mission to talk to them all and keep talking. She kept talking even as others misunderstood her, scorned her, and scolded her, since they didn't realize that what she was doing was baring her life wide open, so anyone drawn to her light could share their lives too. She was told, 'Stop putting yourself out there. Stop talking so much about what's wrong with you. Stop focusing on the negative.' And she looked at them, finally, and said, 'No.' Because there was nothing negative. There was no wrongness. There was only her life. And her life was only positive and right. There was laughter, and amusement, and silly things, because even as the pain overwhelmed her, she would keep going, keep laughing. She told stories to those who wanted to listen. She helped many people learn about themselves. She became a teacher, an advocate, a true light in the darkness. She became strong and brave because she had to. And she will have stories to tell for the rest of her life."

bluedarklotus

dragongirlsky

auroradragon

I admit, I got a little choked up while writing this. Maybe I do feel much more defensive and upset and naked to criticism than I thought. I'm really, really trying to work on letting all that go. It certainly doesn't help my mental health.

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