brightlotusmoon | Entries tagged with thoughts

Copied from a comment I left on Facebook. During a discussion regarding how cerebral palsy might or might not be seen socially as an active disability that impacts a person's social or professional life
***

I am medically disabled.
I'll be medically disabled and socially disabled even when society makes everything accessible and easier to navigate.
My disabilities are part of me forever because of my brain being abnormal and different from the average. I'm cool with that.
I don't want to fight or struggle or handwave against it. Disability is a part of Joanna Me, just like shortness and writerbrain and cat loving an writing paranormal urban fantasy with future elements.
It is one definition of Joanna Me but it is not the biggest. It gives me powerful insight into my world and the world around me. It's like a friend woven into my neurology. However, there are much stronger definitions to show.
Being disabled and having a disability are often unconnected depending on how the person feels. Hence the disconnect between medical model and social model. Cerebral palsy is medical, but social depends on how society is able to make room.
If someone wants to see my disabilities first, that's cool, as long as they see the rest of me too.
I identify as disabled. One of my disabilities is cerebral palsy. It is a result of congenital brain damage. I will always be brain damaged. I will always be disabled. That is fine by me. I embrace being disabled while having a disability.
The End.

A fantastic quote on feminism that I want to remember:

" Equalist as the replacement word sounds like an active, willing erasure of the specific problems faced by each of the marginalized groups in society. Each will have their own pitfalls and villains in the public eye, yet the approaches to solving the problems are unique to themselves. Erasing the various identities and struggles to homogenize them to allay the delicate sensibilities of people who don't want to be associate with the word "feminism" which had somehow become a bad thing in society, will not help matters at all. It's actually hurting our causes more to erase the specific problems and people from our awareness. And people can also be for equality when it comes to race or disability, but will have startling misogynistic views. Equalist only serves to placate the misogyny by implying that identifying with women's struggles is somehow beneath people."

One cat who needs to lose at least six pounds, one cat who could probably stand to lose three or four, one cat who needs to gain three or four. Since we're still free feeding, we've decided to severely limit the amount of kibble in the bowls. I'm so used to making sure both the downstairs bowl and the upstairs bowl had enough food every day certainly hasn't helped Jupiter. Now it's time to make him slim down. Luna is a little pudgy, too. Calliope is still scampering and burning elder kitten energy, but I realize that she will eat when she wants to eat and she will be fine. I just need to tamp down my anxiety and OCD issues and prepare to listen to mewing cries of "We're hungry!" at night.

Calliope, at 8.3 pounds, has some Egyptian Mau and Abyssinian in her brown striped tabby genetics, and perhaps all she needs is no more that three or four extra pounds. But we've learned that Jupiter is around 24 pounds, which is quite overweight even for a large male ginger tabby with largeness in his genes. Luna could certainly stand to drop from 15 to 13 pounds, I think - she's small enough. I don't feel guilty, just slightly irritated that I kept wanting to keep them fed. Also, Jupiter keeps eating Calliope's food, which seems much more interesting. It's Adult Cat food, since she is at least a year old, but it must have good flavors. So I'm limiting that bowl as well. Calliope has some mild disinterest in the Wysong, Blue, and Nutrisca foods, but she does eat them. I just have to remember to pour as little as possible.

Slightly unrelated:
Calliope has been sleeping pressed up against me, and starts by snuggling in the crook of my arm, her whole body touching the length of my torso, allowing her to nurse quietly against my shirt while nuzzling my neck. Her purring is soothing and very kitten-like: steady and soft and loud and comforting. When she is finished, she will wander the bed until she finds a spot against my ankles or between Adam and me. Jupiter has slept on the bed very close to her, which is very good. Luna, who has a circular bed between our pillows, is still snarling at and smacking Calliope. Females and territory. But Calliope is finding her spots and spaces, and I am definitely her person, and she is definitely my shaman comfort cat. Not like Rose. Her own medicine. Yes.

Current Mood: okay

BTW, I'm officially on MediCare Part B (retroactive as of November) and earlier my Part C Aetna Medicare ID Card arrived, which won't be active until January 2014. It is all good. It will still save over a hundred dollars a month between all insurance and drug coverage. All my doctors are covered, all my drugs will be cheaper, and I have carefully read, re-read, and examined all the paperwork with a magnifying glass (no, really). So December's SSDI check will be less two months' insurance payments, and then January's check will also be less the Part C payment, but it is all good, because it is still cheaper than what I am paying under MHIP Carefirst in general. I feel... well, I don't know if "lucky" is the best word. But it is not as bad as it could have been. I mean, I also ride Metro and local bus transit for free thanks to being disabled and a member of Metro Access paratransit system.

Some fully able-bodied people like to scold me for feeling grateful that I am disabled enough to qualify. It's not about that 'grateful' feeling or that whole "skip to the front of the line" thing. It's not about any of that. It's... I dunno. It's about taking whatever disordered damage you have and turning it into a personal individual advantage that works in your favor. It's about accepting and embracing the awful pained cracked parts of life and seeing that they have been opening all these shiny doors, after slamming closed other doors so furiously that the whole building shakes and walls crumble. You may never be able to walk through those slammed locked bolted doors that most able-bodied people get to glide through easily, but you have all these other doors opening just for you, ready to lead you to places where you, personally, will feel more comfortable, accepted, embraced, and understood on a level secure with your disordered damage. It's not your fault, and the places these doors lead you are fully aware and have already set up a spot for you. You are always safe in those spaces in between.

Like... having mild disabilities. For example: Having mild cerebral palsy is like being in interstitial places constantly - interstice being a small space that lies between things; a space that intervenes between things. Neither completely here nor there. A space in between. A crack in the continuity. Mild autism in that nobody believes me until they spend a few word-filled hours trying to decipher my brain languages. Mild ADD and mild OCD and mild/moderate but fierce migraines and headaches and mild/moderate but fierce epileptic complex partial seizures and mild/moderate but fierce chronic pains and mild inflammations and and this and that. Mild mild mild. Haunting and interstitial. Never bad enough to cause me to be rushed to a hospital, never simple enough to merely pass by with a handwave. I am those spaces in between, as are many, many, many people with certain neurologies. We are in those cracks. Oh, they say, it's all right, they're not too bad, they could be worse, they say. And then what?

Any fellow disabled folk and people who understand want to chime in? Am I making enough sense here? I feel like I am.

Current Mood: pensive

We started out at 7:00 this morning, made a few stops, and got to Sag Harbor around 2:00 this afternoon. Now at my parents, digesting dinner, watching television quietly, and getting ready for an early bed. The rest of the week will see us going around Southampton and Bridgehampton and relaxing with pizza and bagels.

Current Location: Sag Harbor, Bay View Dr W, 80

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

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

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

Current Mood: nerdy

Quote from a friend that applies to me in a scary way:

"If you really feel like picking a fight with me, you will have to wait until tomorrow afternoon. I'll need at least two good meals, some meditation, a comedy film, a squeezable exercise toy in one hand, and a muscle relaxant drug that will help me type properly without muscle pains and tensions.
This is why I like arguing online: We each get our points across without interrupting shouts, we can research and cite our sources properly, we can explain exactly why the other person's argument is fallible, we can defend our own position logically and rationally, we can actually get words in edgewise without stammering and snarling from both sides, and we can save our vocal chords from getting sore.
I hate debating in person. My opponent loves to tell me exactly what is wrong with me in ways that don't even make sense, and he or she refuses to let me explain why that argument has no basis in reality.
Let's say, for example, that he or she decides to pick on the fact that I have a terrible memory in general but I can easily quote my favorite books and movies. Do you know why I can easily quote my favorite books and movies? Because they are my favorite books and movies. It has absolutely nothing to do with having a poor memory overall. It just means that I've read certain books and watched certain films often enough to at least paraphrase, if not fully recite, entire lines of dialogue. See, people with brain issues such as autism spectrum disorders are able to do things like that. Having a disintegrating memory while being able to recall very specific things does not mean that I am pretending to have a selective memory, and frankly I feel insulted when it is implied and inferred.
I am chronologically young and neurologically aging. I also have many friends going through the exact same process. I talk about my experiences often, so people like me can know that they are not alone.
If you want to fight me about that, if you want to accuse me of deliberately living inside my brain disorders, please come inside my brain disorders. They're all connected, so it's like a fantastic patchwork house. My brain has a very comfortable couch. Would you like some tea? I just got some red tea. I have decorated it with my disorders proudly. They are part of me, after all. They are part of who I am. Aren't they beautiful? Like shiny, sparkly, broken puzzles. I may never find the missing pieces. That's fine, though.
Did you know that in Japan, when a ceramic sculpture is broken, they weave gold through the piece when putting it back together? Kintsugi: the Japanese art of repairing broken pottery with gold. The idea behind it is that the piece becomes more beautiful and valuable because it has been broken and has a history. I am full of gold-filled cracks. I am very proud of that. I am proud of my disabled and handicapped history. My life is made of gold!
Oh, please don't look upset! No, no, please, sit comfortably. I hope the tea is to your liking. Yes, even that mug has gold fillings, Even the couch is sewn with gold. This entire place is filled in with gold. And it is lovely.
Wait! Did you mean that I use my disabilities like crutches to make excuses for being in pain? That's ridiculous. I mean, I certainly don't mind magical thinking, but you can't make something that extreme happen just by imagining it. I'm not imagining it. I'm living in the right now. And, like many disabled people, my right now means having a body and a brain that feel more injured and aged than normal. I talk about this so that others like me understand, so they have answers to questions they are too worried to ask. Sometimes when you approach age thirty it can feel like age sixty, for some of us. That is why I am an activist for certain disabilities and an advocate for certain health treatments.
Oh! Oh, my! Is that also why you're angry at me? Do you believe that I use my medical problems as an excuse to do nothing while I am young? That is the silliest and most untrue thing anyone has ever assumed. Perhaps you should talk to some of my disabled activist friends. They will tell you the same thing. Life is hard for everybody. But it is sometimes a little bit harder for disabled people. We're not special snowflakes. Although snow and cold do sometimes make us hurt more!
Have some more tea. It's very calming. We need to be calm for this fight.
Just let me know when you are ready to fight. I need to do some meditative qi gong exercises to prepare. Just please keep in mind that I would rather we each complete a piece of debate without yelling over each other. It is much more difficult to weave healing gold threads through words."
-Written By A Disabled Gentleman Who Shall Remain Anonymous, And Who Reflects My Exact Thoughts, Feelings, and Personal Beliefs With Incredibly Frightening Accuracy To The Point Where I Could Have Written Most Of This In Various Bits. Not Kidding, I Think This Guy Shares My Writerbrain.

Anyway, speaking of the art of using gold to heal broken things!
http://www.pinterest.com/uberECOcool/kintsugi-saving-broken-ceramics-with-gold/

Current Mood: good

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.

Current Mood: confused

This is one of the most wonderful articles ever.
http://disruptingdinnerparties.com/2013/09/26/modeling-consent/
"Rape culture tells me that men always want to just “get the sex”, so naturally, I was shocked that he chose to risk “getting the sex” by verbally checking in. “Checking in” is a part of consent culture that is very easy to dismiss. It’s easy to tell yourself, “Oh, I already asked about that. They said they were ok” despite picking up on body language or other signs that would tell otherwise."
-Stuff I Did Not Know About
And:
"Consent culture doesn’t have to be limited to sexually charged situations. Pretty much any situation where you are interacting with people is an opportunity to check whether the other person is OK with what you are doing. Eg: “Would you like to walk there together or did you want some alone time?” “I’d like to talk about this with you. Is now a good time?” “This conversation is getting pretty intense. Are you OK with continuing on this topic or would you rather talk about something else?” I think it’s really useful to do this kind of negotiation in any kind of interaction, sexual or otherwise so that everyone feels like it’s OK to express their boundaries. Partly because it makes those interactions more safe and enjoyable for everyone in themselves and also because it feels more natural to continue in that way if things do become sexual later."
-Stuff I Want Happening Right Now (so that people can ask me if I want to be left alone when I want to be left alone)
And:
"I appreciate consent to the point that I often take a “protector” role at parties as I maintain more of my sensibilities while inebriated than many of the people I know. That being said, if two people can read each other without words, there is NOTHING wrong with exchanging a kiss without asking for it. If one person can’t read the other accurately, there is an issue with either the kisser’s perception, the kissee’s sending of signals, or some combination of the two. There shouldn’t have to be a textbook for organic, natural encounters. While everyone is entitled to their private space and shouldn’t be taken advantage of, if someone is wearing an alluring outfit at a dance club that advertises how sexy it’s customers are, that probably isn’t the kind of place to not have an awkward lean-in after some dancing (which is often close and arousing anyway). Signals are just as important as perception, and basic, decent, human respect is the most important thing of all, with communication, verbal and otherwise, at a very close second."
-Stuff I Hope Everybody Understands Fully And Respectfully (meaning that if you cannot read a signal, inquire before moving forward)

And I feel horrified that I did not realize there was an actual consent culture, because rape culture has been so prevalent...

Current Mood: thoughtful

Because I can never recall the actual daily Pain and pain relieving supplements off the top of my head that I personally take:
MSM, Pau D'Arco, Sangre de Drago, Sea Buckthorn, Vinpocetine, Nymphaea Caerulea, Serrapeptase, Noni extract, Mangosteen extract, Cayenne extract, Kava extract, Passionflower, Ashwagandha, L-Tyrosine.
There we go!

(Disclaimer: My body is not your body. My pain is not your pain. My chemistry is not your chemistry. My neurology is not your neurology. Your mileage may vary.
If you choose to research these supplements, and especially if you choose to take any of these supplements be reasonable, rational, and cautious. These supplements may not work for you the way they work for me. They may not work at all.
If you wish to purchase and test any of these supplements, I suggest the following websites: SwansonVitamins.com, Vitacost.com, PuritansPride.com, which all make quality products that I trust. I am not responsible for anything except what I type and say.
Please do not ask me simple questions that Google can answer, such as "What does this/that supplement do and how and why?" If you are unable to do a Google search, tell me why and I shall provide links. However, I am not a medical practitioner and I only study holistic medicine as a hobby. I do not know everything. It is your responsibility to do your own research and make your own decisions. However, I am happy to answer questions about how these supplements have worked with me, why, how, etc. Please holistically drug yourself responsibly.)

Current Mood: pensive

You know how people who work out a lot always say things like, "Wow, that workout class choice was intense! I'm going to be so sore tomorrow I don't think I'll be able to sit down!" and then they go do it all over again and again and they keep talking about their horrifically sore painful muscles and how it's going to help them get in great shape no matter how much it hurts?
I walked two miles between picking up my prescription, getting lunch, and strolling around the neighborhood, and now my entire lower body doesn't want to move. My legs, hips, and knees have decided that unless I have my cane on me, I cannot walk.
Where is my special prize? I though we got prizes for sore muscles.

See, this is why I sometimes feel slightly triggered if a friend talks about how painful and excruciating their extreme exercise regimen makes them feel. You know. P90X or Yuppie Boot Camp or CrossFit or Zumba or Power Yoga or Dance Yoga or AcroYoga or anything combining yoga with anything or anything combing dancing with anything. Also, I will never stop saying how sick and tired I am of hearing about Snobby Yuppie Yoga Workout classes. I get it, you stretch and expand your mind and you exercise at the same time; good for you; now put your mind back in your brain. Stop telling me how yoga can help me and why. Stop. Just... stop it. My mother (who casually teaches old ladies kripalu style disabled yoga) does that for me over the phone very well because we're the Gilmore Girls with more bickering and we do that kind of thing.

The point is: Having physical disabilities and chronic illnesses means living with certain limitations unique to each individual, no matter what. People in wheelchairs do exercise and yoga, people with breathing problems take dance classes, with with semi-paralysis take martial arts, etc etc... and everyone finds a way to raise their own limits while compromising and compensating to fit the workout to them instead of fitting themselves to the workout. Unfortunately, not all of us are able to do this in a class setting or even a group setting for whatever reason.

So. When I say that my body is in horrible horrible pain from extremely simple, quick, easy working out after you say the same about extremely intense, slow, difficult working out, a tiny part of me runs off and cries.
The story:
When I was very little, I took gymnastics to try and help with the cerebral palsy. I lasted one year. I excelled at parallel bars and rings and anything that put me in the air. But I could not do floor exercises or balance beams. When I was a teenager, I took tai chi. The master was sixty and looked thirty. I was the youngest student. I kept making the mistake of following the master and not accepting my body's limitations. The master forgot that I was disabled. In the end, I wound up handling a few injuries that led to permanent sciatica and the master was so horrified that he offered to help me recover and to pay for doctor sessions. When I was in college, I took a few simple, mild exercise courses, and after every single one, while the other students were high-fiving and laughing and feeling energetic, I was curled up trying to hide my tears of agony. The first few times I tried even basic yoga, my entire body rebelled and screamed negative things until I meditated and listened and learned what was better for me, which led me and my mother to develop a highly modified version that was almost not yoga.

The point:
I have limitations with my disabilities. Do not tell me that I have none. Do not tell me that the only limitations are in my mind. Especially do not (ever) tell me that the only disability is a bad attitude. Back off and let me do what I do and make gentle suggestions here and there. Offer to help me stretch a little more and steady my arms while I lift a heavy thing. Help me stretch and flex my legs when I do my physical therapy. Do not whine to my face about how sore you are after your dance yoga power ballet spinning acrobatics martial arts class done in a well-lit air conditioned crowded room blasting out hip pop music. You chose that. You wanted it. You had the ability. I dream about dancing. I dream about being a gymnast. I dream about mastering tai chi and qi gong. I do my best every day to make small, gentle, careful moves that point in all those directions. I don't push my limits. I raise my limits so that I have farther and deeper to go before I reach those limits. And it is going to take a long time. I have to be extraordinarily careful so I don't trigger various symptoms. I only look healthy.

So go on. Go do your Power Dance Acro Cycle Pilates Trampoline Athetic Yoga Karate Class. Rip up your muscles so they can knit together and become stronger. Be strong. Be intense. Be powerful. Be proud. Fuck it, be arrogant and condescending. You deserve it for all that hard work.
Just don't tell me that I can do all these things you do with ease and don't tell me I have no limits and don't tell me that I'm just challenged or differently abled. Do not insult me. Just talk to me. Then, if I ask, work gently with me.

Current Mood: sore

And now something is happening in my brain, and I cannot pinpoint it well enough. It could be another wave of depression, or a wave of panic, or a wave of just... I don't know. I have two dozen medical issues; pick something. It feels as though my brain is physically spasming. My amygdala feels weird, as though it wants to say something and cannot remember.

Adam is off again, so he can take me to my pain specialist, and then maybe we can go to Barnes & Noble so he can get me the Twilight Sparkle plushie to go along with the Fluttershy vinyl doll that he brought home from New York City along with bagels.

We made chocolate chunk cookies, with cream cheese instead of butter. We practiced Reiki. Adam is what I like to call a raw magic mimic. All he has to do is watch someone perform an energy form and he can re-create it in raw form. Like when he was in New York, a random monk brushed past him and slipped a wood bead bracelet around his wrist, whispering, "peace to you, mage" - and with that touch, Adam absorbed that energy, and when he came home he touched me in concentration and I felt so much calm and serenity that it was almost like being high. I guess it's kind of like being Peter Petrelli, or Rogue as she can now control her powers. He can call the energy at will. I'm envious. I need to to that for myself. But maybe I can't. Maybe it wouldn't work if I tried it on myself. Maybe the energy would only move outwards. We shall have to discuss the physics and chemistry and neurobiology behind it.

We've replaced the coffee grinder. It is black. Black fridge-freezer, black big freezer, black oven with black microwave range, black dishwasher. All we need is a black Mr Coffee and a black can opener.

I love my Chobani Lime Greek Yogurt.

Yeah, it's a depression. With a slowly stalking panic attack. Regarding my previous post: I definitely would want a cure for that. It is strangling.

Current Mood: pensive

http://www.upworthy.com/best-explanation-of-religion-i-have-ever-heard-and-im-practically-an-atheist

Dear every religious person: Listen to this. This guy is a bishop, and he's better at explaining organized religion as separate from the godhead than almost anyone I have ever heard. Dear every nonreligious person: You will be nodding vigorously and appreciating people like this man so much you'll wish every religious person was like him.

This is why I'm pagan. This is why I have no religion. The godhead - a single god, many gods, a source of energy, the higher self, nature, the universe, however you want to identify with it - has nothing to do with praise, fear, love, hate, organization, community, or what each person does in life. It just exists. It hangs around in its own dimension, formless, genderless, minding its own business, occasionally feeding off the soma of belief from living beings who find it pretty and comforting. It lets those beings shape it into whatever form they can recognize most. And since it is so pretty and comforting, people look to it and embrace it. If it makes them feel good, hooray! But to invent controlling concepts like Heaven and Hell just to scare people into running like children to your arms - born again, as it were, as this man says - is not a good way to explain your belief systems.
I'll say it again, but I believe Neil Gaiman did it best with "American Gods" - the idea that all gods are a sort of Mobius strip, circling back to creating themselves out of the minds of humans until they become real incarnations and sustain themselves on human worship... Except I like to think they originate in dimensions both outside our worlds and within our minds. Not quite panentheism... more like the universe being our own selves.
See? I'm so eclectic I don't want anyone else to "convert" to my belief system. I don't even know how to explain it. This is what happens when I'm raised by an atheist and agnostic both with very open minds.

Current Mood: cheerful

My cats are so spoiled that we serve their gooshyfood on a white ceramic gold-rimmed plate. Luckily, all three will eat from the same plate, from a single can of moist food, and it's more supplemental, twice a week, to the free-feeding with organic or semi-organic dry food. We also shop at H-Mart for worldly produce and fresh well-kept meat. And we go to Whole Foods and Roots for goat cheese, wine, and my skin care if I don't order it online. Yes, we are poor semi-yuppies. We treat ourselves when we are financially able and live off the riches for a while.

So, I asked Adam to drive me to Petco for food because he had a car and was very strong. We decided to hit up Unleashed By Petco (also because the people there are just that cool).
I was going to buy another huge bag of Solid Gold, and then I got into a lengthy, intellectual conversation with a store associate named Amy. See, once I explained that what I wanted was nutritional density, we had a long talk, and on the way to the Solid Gold bag, I stopped and picked up of Blue Wilderness Duck Formula, and then we grabbed a bag of Solid Gold Indigo Moon. Amy read off the Analysis of both for comparison. And I realized that while Solid Gold was 15 pounds and Blue Wilderness was 12 pounds, Blue Wilderness was much more nutrient dense.
My cats already loved Blue Buffalo in general, and I'd fed them Wilderness once; and I realized that the main reason I'd been buying Solid Gold was because of the bag size. But, as Amy and I agreed, nutrient and nutritional density was more important than the weight of the food. There was a three pound weight difference... but Wilderness was packed with more intense nutrition, in my eyes.
Also, I picked up that 12 pound bag with no issues, and realized that if I were alone, I could walk with it all the way to Lake Forest Transit Center, which was a ten minute walk.
I also mentioned that I was shopping for canned food, and I knew they carried Soulistics, which I pronounced "solstice" - and that made Amy giggle wildly. "You pronounce it soulstice like I do! I keep messing up!" I chose the chicken pumpkin multi-can wrapped set. My cats go wild over Soulistics.
And while we were there, I decided to test out my weight limits on litter by picking up a 14 pound bag of World's Best Cat Litter and resting it on my right shoulder. I smiled at Adam and Amy, and realized that yes, if I absolutely had to, I could carry one or the other. Giant sells a very good brand called "Feline Favorite 100-percent All-Natural Clumping Cat Litter" which contains zeolite crystals - and according to their claim, a 10 pound back has the same volume has 50 pounds of clay litter (hah, we'll see about that).
But knowing that I could hit Giant for litter and Unleashed for food all by myself, back and forth by bus with my free ride Metro Access pass, made me realize that my independence as a disabled person is getting better all the time.
And those strength training exercises are probably helping, too.

Current Mood: silly

So many books, so many books.

So, True Blood. I've watched all the new episodes. The books don't matter anymore. The HBO show is absolutely going in eighty new directions. Although Niall is more awesome than in the books. Rutger Hauer is fucking awesome. I do wonder if they will bring in Mr. Cataliades and Diantha, then we can have friendly demons! If they could just get Christopher Walken... especially as a good guy. Maybe a faery. I like Ben no matter who he might be. I'm tired of vampires. Especially Bill/Lilith/WhoeverTheFuck, and even Eric. Infallibility and shock with a vampire is sad and wangsty. Pam and Tara are awesome. Jessica is awesome. Sam and Lafayette are awesome. Jason and Sookie are surprisingly awesome. LOL, Andy, you are adorable. So many twists and turns. Having read all the books, I have decided that I am completely and utterly fine with all the changes. As long as Charlaine Harris is entertained and paid, I'm sure she is utterly fine, too. Hell, her favorites are Lafayette and Jessica - and she killed Lafayette and never invented Jessica to begin with. If I become a famous author whose books become a TV series, I might take lessons from Harris. Just sit back and enjoy. At least in the final book, Sookie wizened up and stopped being stupid, and Sam became awesomer and sexier than ever, and the two of them confirmed all my speculations. These are not actually spoilers. Or if they are I don't care.

Current Mood: geeky

Hey,

naamah_darling. I couldn't find that old post with Amber's original origin story, so I'm just copying it as a new post. This Amber is kind of the same Amber, and she was supposed to go on to meet Clara and they would save the world, etc. I'm cherry picking right now.
Also, the vampires are not exactly the vampires we think of when we think of vampires. They have sharp teeth because they are predatory, not really because they need blood to survive.

( Blood And Soul )

Current Mood: artistic

Aww, I remember writing this last year and people being very amused.
***
Bright eyed, bushy haired, bright colors, babbling due to painkillers and happy muscle relaxants and healing gemstones and all that weird pseudoscience silliness that I believe in despite my atheist agnostic upbringing.
I've been pagan since I was a teenager, so hah. Polyagnostic polytheist pantheist eclectic witch who will believe even if proven completely wrong. Even when my parents insists that it's just my brain and that psychic powers don't exist, I will agree because that is true, too. There are so many truths out there. I love quantum everything.
See, I follow the Discworld concept: Even if a deity manifests in front of be and insists it is a great god, I will tell it "That's nice. Just because you exist doesn't mean I believe in you. I believe in my Higher Brain smushed with my Subconscious, which you possibly came from. But since you are here, let's party anyway. Red wine?"
I firmly believe that Man created God, and the Universe created both Man and God, and all gods everywhere sprang fully formed from Man's brain because Man's brain is more complex and extreme than we can ever conceive. The universe is bigger than everything.
And I have also always believed in All The Gods, so whenever someone asks me if I believe in God, I always ask "Which one?" which leads to confusion and people thinking I'm, like, evil or something and must be saved or whatever that means. *shrug* I don't care. I like what I like and I don't want to push it on anyone because my faith is mine and your faith is yours.
I just ask that you please please do not attempt to convert me to Christianity because nope nope nope. I am half Jewish, I know that Christianity is a Jewish heresay, I know Yeshua was just a man who explored various believes including paganism and then returned to talk about it, and that he wasn't part god, he was just a very good orator. So, no. I am who I am and if you leave me alone I will not roll my eyes and facepalm at you. I love you all, I always will... but I can love everyone without being bothered by proselytizing. Love is love is love is love. There is no wrong or right, there is only love.
***

Current Mood: geeky

So. I talk a lot about fibromyalgia, often about epilepsy, occasionally about cerebral palsy. I don't talk enough about how the minutiae and tiny complexities of cerebral palsy affect me on a daily basis, because there is so much to talk about with so much to explain, and not even my husband gets everything - in fact, since his brain works too quickly for... well, everything, my brain is slightly illogical, very odd to him. Only my mother and father understand Joanna's Brain. I mean that literally. Someone could insist that they know how I work, but they actually cannot, they are literally unable to figure me out unless they observed me very closely as I grew.
Now. The thing that seems to puzzle people most about my brain is that I have trouble making easy connections between what I see and hear and feel, and what is observed and perceived. It is why I am a terrible housewife. It's why I don't clean the house as often as I should. It's why I forget to do things, why I get scolded, why I can easily irritate people. Connections get lose very quickly and very easily. I need to see, hear, feel, understand, over and over and over. "Jo, why the hell did you do that? Jo, why the hell didn't you do that? Jo, didn't you get that? You forgot to do that! You need to do that!" - phrases I hear constantly. I act on impulse. Often, the impulse is on a childish level, where I just don't notice or understand or even care. Yes, I have OCD and ADHD Inattentive and Sensory Processing Disorder. They do contribute to how I act and react. But I can readily admit that sometimes, it is just me. Sometimes my brain happens without rhyme or reason. I may be a thirtysomething adult woman, but most of the time parts of my brain don't realize it.
Neurology is weird, isn't it?

Current Mood: geeky

Especially for

naamah_darling

Here is a post for questions about my Healthy Multiplicity, and the three (now potentially four) female people/entities who inhabit my brain and help me cope with all my various vast disabilities and illnesses.
This is also a post for others to discuss their own.

-Serena: The first known guide, who guides me through all and every pain, tension, emotion, and fear, who is my inner nurse.
-Alicia: The second known guide, who guides me through epilepsy and postictal states, who is my inner mage.
-Amara: The mysterious third guide with me from birth, only recently human, who guides me through overall brain damages, memory problems, cracks in the walls, neuronal crumbling.
-Amber: the previously silent, hidden fourth guide who acts as a preserver of my sanity, who seems to catch me when I fall so deeply I fear entrapment, who deflects darker energies and turns negative into positive.

Disclaimer: This is not a case of DID, which is a very, very specific disorder. My girls do not leave my mind to use my body and voice, although there have been very rare postictal states in which Serena has spoken through me when I was fully incapacitated; however, I was still myself, just unable to articulate until she lent her voice.
Healthy Multiplicity is extremely common in perfectly healthy people. It is often seen as a form of coping mechanism for many disabled people, who need to sometimes retreat into their creative minds to preserve themselves, to soothe their mental conditions, to know that they are able and capable and strong. Because sometimes, being reassured by loved ones falls hollow, and you know your own mind well enough, and your own mind knows you well enough.

Current Mood: geeky

So, a lot of people have been asking me what beauty products I have been using on my skin lately. Might as well link to it.
These products have, quite literally, every single ingredient I ever wanted. Every. Single. Ingredient. All in one. I kept telling Krista (from Harmony Apotheca, now Etesian Plantaceutical™ Skin Care) that it was as if she had read my mind without ever meeting me.
http://www.etsy.com/listing/99942639/sale-41-marshmallow-and-manuka-soothing
http://www.etsy.com/listing/84293185/2in1-manuka-honey-amazonian-body-butter
These are both excellent as anti-inflammatory salves for my joints and muscles and nerve pains and such. The cream smells very fresh, fruity, and floral, extremely clean and invigorating. The butter smells incredibly herbal, like strong sage and deep woods and young trees and a forest after rain.
I have been using these in my beauty routine, day and night, for over two weeks. My skin looks amazing. I am finally, after all these years, starting to feel truly satisfied. My body dysmorphic disorder, which as you know is focused on my skin, is actually slowly starting to back down. I didn't think that could happen.

Also, the most recent photos of my face made up. I like them.

"Snow White Red Riding Hood Dragon Princess Warrior"

harmonycolor1

Color Cosmetics - adding war paint and beauty masks since the beginning of existence.

Eyes: Urban Decay Eyeshadow in Mushroom, Hijack, Flash. It Cosmetics Hello Lashes Mascara; Envyderm Growth Volume Mascara
Lips: Buxom Full Bodied Lipstick in Provocateur; Lavera Beautiful Lipstick in Deep Red.
Face: 100 Percent Pure Healthy Skin Full Foundation in Creme; Urban Decay Naked Skin Foundation in Shade 2.0.

Moisturizers: Harmony Apotheca 4:1 Marshmallow and Manuka Eczema Relief Cream with Amazonian Butters.
Earth's Own Bath N Body Divine Youth Creme with Coffee Fruit.
Walk In Beauty Sun Protection Lotion with Superfruits.

Current Mood: geeky

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Page Summary

Medical vs Social Disability models
We're all different, and that's awesome
Fooding the cats
The Spaces and Hauntings Between Us and Everyone
Thanksgiving 2013 1
Are they muses? Story characters? Imaginary friends? Does it matter? We love each other.
Cut me and I'll stitch it with gold
I... I like parts of me?
Modeling Consent...
My mind to your mind - wait, no, it's too weird in here. Get your own.
Limply waving my hand in the air like I just don't care
Paint it Black (except everything else is Sunshine Yellow)
Dude, my own belief system hurts my head. But I like it because it is awesome.
My cats are so spoiled...
Books. And the visuals.
Old Story, Old Idea, New Changes, New Ideas.
Because universebrain
Talk To Me: Cerebral Palsy #1
Guides, Guardians, Spirits, Angels, Parts Of Me, Fictional Creations, All Of The Above...
Color and Beauty

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The Return To Innocence

The Return To Yourself...

Entries tagged with thoughts

Medical vs Social Disability models

We're all different, and that's awesome

Fooding the cats

The Spaces and Hauntings Between Us and Everyone

Thanksgiving 2013 1

Are they muses? Story characters? Imaginary friends? Does it matter? We love each other.

Cut me and I'll stitch it with gold

I... I like parts of me?

Modeling Consent...

My mind to your mind - wait, no, it's too weird in here. Get your own.

Limply waving my hand in the air like I just don't care

Paint it Black (except everything else is Sunshine Yellow)

Dude, my own belief system hurts my head. But I like it because it is awesome.

My cats are so spoiled...

Books. And the visuals.

Old Story, Old Idea, New Changes, New Ideas.

Because universebrain

Talk To Me: Cerebral Palsy #1

Guides, Guardians, Spirits, Angels, Parts Of Me, Fictional Creations, All Of The Above...

Color and Beauty