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

***

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

***

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

But I look at that blue and silver dragon scale cane, bought for me by a total stranger with the same disability as me, and I think the best way I can Pay It Forward is to make sure someone I care for stays as mentally healthy as possible...
brightrosefox: (Default)
My modified Disablility Compensated Qi Gong exercises always help, mentally and spiritually and psychologically and physiologically. Like yoga, except Fake Yoga Cripple Style that is not actually yoga. (FYCS. FIX. Ha ha ha...) (Or hey, Fake Yoga Cripple Style Modified Exercise. FYCSME = FIX ME. Ha ha. Wow. Dude.)

But it isn't helping today. I'm too Hollow, which is my term for deep major depression. I'm too Postictal, after that unexpectedly awful seizure yesterday and its aftershock which were tiny seizures for hours. Emotional responses are foreign and results of emotion are mere symptoms, like crying and laughing. I will meditate again, do more qigong work, and breathe and much as possible.
FYI. I am having an episode of pure major Depression plus major Anxiety. This is accompanied by mild memory loss of the past two days. Everything is foggy. I know I should be upset about something, but I cannot feel upset. What is upset, anyway? I think I hurt myself emotionally yesterday. I wish I remembered what it was. I believe it started out with false happiness. Remember that weird assumption of some sort of hypomania? I think I was outside of my rational mind.

Back to special exercises.
People keep suggesting and recommending breathing exercises. I know all of that. I know people just want to share their personal remedies. I love it. Please don't think I am rejecting you. I love hearing your stories. Even the stories about yoga. I wish I could explain why just seeing or hearing the word yoga evokes a sad, upset reaction. It isn't that I am unable to do yoga. It is just that yoga extremists do not listen nor care about my need for compensation. My body was born crooked. I cannot form a proper straight line even if I held on to something. No amount of cajoling, insisting, or pushing different forms will change that. Please don't do that. Please just accept that I have to perform qi gong differently, and that qi gong included poses that are similar to yoga, and that yoga is not the greatest panacea of healing holistic practices. This is part of why I don't want to visit California, which makes absolutely no sense and makes me look prejudiced.

So. Please, please do talk about how much yoga is healing you, because that is beautiful and I am genuinely, honestly joyfully happy. But if you wish to suggest a yoga pose that can be modified for someone with a shaky, spastic, crippled body, please suggest an alternate form. That is all I ask. There is no such thing as a real panacea, even in the botanical world, even in the plant and herb world, and certainly not in the exercise world. It is entirely possible that I will find a set of yoga exercises that will really, truly help me, and I will join the ranks of yoga enthusiasts. Anything is possible. Nothing is off limits. Except evangelism. If I wanted something pushed down my throat, I will drink water mixed with special fruit and plant powders, like sea buckthorn and moringa.
This is coming from my years as a holistic enthusiast and pusher. I was bad. I was essentially an asshole. And then I learned that it was just wrong. I never want to do that again. Just because something works perfectly for me does not mean it will work at all for someone else.

Any form of good physical-spiritual combination exercise, be it yoga, qigong, taichi, strength training, cardio, dead lift weight, isometrics, plyometrics, dance, hardcore dance, etc, is wonderful and beautiful and strengthening, and will help everyone in some personal powerful way. That is the point of exercise.
I love you all. If you really want to help me, don't push me. Just guide me.
brightrosefox: (Default)
Copied from Facebook, because it should be put here.
*
My neurologist is hilarious and awesome. And she thinks the same of me. We're gonna schedule a brain scan. And we traded quips and jokes about why the he'll I didn't get diagnosed autistic until last year. And she agreed that I am badly stressed and depressed for no reason and she desperately wants to help, and she wants to increase the Zoloft a bit to see what happens, and she's very pleased that the passion flower is helping me sleep, and she cares so much it makes me cry. She hugged me when we were done.
I told her that I feel like I'm on another planet with super caring doctors who really help, and she looked so empathetic and almost upset about the lack of such support. I heart you, Chang Ching Debbie Lin, super neurologist and friend to patients.
*
And here I thought they would take more blood. I must remember that the good veins are in my right arm. I'm impressed I was able to watch both arms being poked. That was a big needle.
*
And of course I tripped and fell flat on my knees and shins while walking through the grass. As I was using the cane to slowly get up, I heard a woman call out, and then a hand was on my arm. She asked me if I was okay, and asked if I was going to the bus stop across the street. When I said yes, she held my left arm and helped me the whole way and stayed until we were sure I was okay. Then she went back across. Funny thing was that we were right next to both the hospital and my primary physician office.
I'm home now, and both my legs are bruised, and I'm all stiff and annoyed. But the look of concern on the woman's face made me grateful that people care enough...
*

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But for me, everything is a cycle. I will never be free. I acknowledge that my entire life, literally, is, was, and will be about recovering from trauma. I have tools to work with. I have doctors who understand me. I have taken all my medical problems on with my own personal arsenal, and I know better than any of the people who dislike my methods how to work with, on, and despite myself. I have my girls, my spirit guardians, my coping mechanisms with human faces, the parts of my brain formed from fictional characters that allow me to handle different parts of my trauma. And so I keep going. Trauma is a part of my life. And that is okay.
brightrosefox: (Default)
You know how people who work out a lot always say things like, "Wow, that workout class of my 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 stiff painful muscles and how it's going to help them get in great shape no matter how much it hurts?
Yesterday afternoon, I walked two miles between picking up my prescription, getting lunch, and strolling around the neighborhood. This morning I woke up in excruciating gruesome pain, 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.
Please, fully healthy able-bodied person who works out every day and treats post-exercise soreness like a badge of honor, tell me why I should feel sympathy for you.

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, especially if it's like bragging. 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. You're relatively healthy, you exercise like crazy until oh dear, you are in so much pain you can't walk, ha ha, and you keep doing it and sometimes you laugh and attempt to compare yourself to a disabled person until your workout pain fades and you do all that healthy working out again.

(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, people 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. Any pain you endure will fade and you will continue your workout readily because your pain means strength. You may even try to compare your temporary workout pain to a disabled person's chronic pain - good luck with that.

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.
brightrosefox: (Default)
In the past week, I have learned some fascinating things about cerebral palsy that I honestly never knew and which truly puts many things into perspective.

1. We tend to exert more energy than others - around 3 to 5 percent daily.
2. We tend to have higher, faster metabolisms. For some, this can lead to clinical, neurological "nervous loss of appetite" - not always the eating disorder, but an actual screw-up between signals being sent between the brain and the stomach. Some of us do develop eating disorders at some point in our lives.
3. 75 percent of us will lose our ability to walk by age 25, or at least we will begin a slow decline, and of that percent, most of us will need walking assistance devices such as canes, no matter how mild the cerebral palsy.
4. After age 30, most of us will begin to rapidly decline physically, neurologically, physiologically, and psychiatrically. Our neuromuscular and musculoskeletal systems will quietly suffer and lead to conditions like fibromyalgia, arthritis, neuralgia, migraines, TMJ, sciatica, seizures, sleep problems, and breakdowns of connective tissues.
5. A vast percentage of us have clinical depression, anxiety disorders, bipolar, and other major mental illnesses.
6. A huge percentage of us have sensory processing disorders, spatial relation difficulties, and memory problems that can get worse after age 30.
7. Even the most mild cases of CP may wind up needing permanent care and assistance by age 60.
8. No amount of exercise, yoga, dietary changes, nutritional boosts, positive thinking, holistic treatments, or pharmaceutical treatments can completely slow the progression of syndromes and disorders comorbidly associated with cerebral palsy. While the damage done is static and non-progressive, the repercussions from that damage will continue to affect the brain and body for the rest of the patient's life. It is not our fault, we cannot and must not fee guilty or ashamed, and we must learn that it is completely all right to ask for help.

***

Excuse me, I need to go cry quietly for a while.
You know my phone number if you wanna call and chat. If not, and you wanna chat, message me. I'll probably be crying.
brightrosefox: (Default)
You know it is a bad day when...

A Cerebral Palsy induced fall against carpeted stairs leads to a Complex Partial Seizure which leads to a Panic Attack with wild animal sobbing so intense your partner comes up and worries to death over you and carefully leads you to a couch and gives you water and holds you.

"It's just stairs," you tell yourself over and over. "You can maneuver them. It's just stairs." And at the top, exhausted by victory, you lay on the floor, weak as a new kitten, heart and head pounding to near bursting, crying until it sounds like laughing. And maybe all you can do in that horrific posictal state is laugh. On the inside. Because Epilepsy is a monster and has no qualms about gaining allies.
Now it is time for Fibromyalgia to have its turn. Burn body burn.

I am so tired. I have no more synonyms for exhausted, fatigued, beaten, weakened. I am done.
But I will never stop. If I cannot be myself I will be a dragon.

For those who know my Healthy Multiplicity: indeed, Alicia and Amara were like drill sergeants in my mind. They were the only things that kept me climbing those mountainous stairs. I love my human coping mechanisms.
Typing doesn't make me tired ever. And this must be written.



So... *cough*
I am okay. But I am not okay at all. So many painful things are inside my brain and my body.
It is okay to talk about that, right? To be not okay? To try to pretend to be okay?
See, that is why I love online friendships. Because if I cannot speak without bursting into stuttering wild sobbing, I can type slowly and people will understand. Right? Oh, my everything hurts.
I could say I have a muscle pain, or a joint pain, or a migraine... but I have everything pain everywhere. And I don't know how to explain it without it coming across as "My pain is worse than yours!" and I don't want to do that. Because all pain is horrible. My pain is no worse than yours. Pain is pain is pain.
I don't know what to say. My brain is so everywhere. I feel so split open and raw and drifting. I think some of the things keeping me together are my fictional characters, who still demand their stories.
I want to sob and scream and howl until I am so raw that I cannot speak. Is that okay? I can do that, right? Nobody will bitch at me for complaining, right? I just don't know. I don't know what to do. I don't know how to feel. Fear is something that feels flat but understandable. Like am emotion I am aware of but unable to truly experience in a deep true way. Like crying. It is a thing that is happening. I just feel confused. Why do I feel?
You know?

Oh, yes. The seizure. Oh, Alicia. She appeared to me so quickly, so fiercely, I had no choice but to grab her outstretched hand and run with her. She yelled, "Come with me now! You need to get through the looking glass! There is no time! Amara is waiting! Serena is waiting! Go, go, go!" and she almost shoved me through the portal, and all I remember is Amara catching me in her arms... Amara with her truly calico hair and her stormy eyes of deep purple and darkest blue and pure gold, her short slim muscled hourglass body that held me in an iron grip, my mouth against her olive-colored neck, and our tumble to a cavern floor that was lit with sunlight and moonlight, so I could see her properly, how she was only a few inches taller than me, her mouth pouty and full, her oval face the dream of every American woman in a plastic surgeon's office, her straight teeth bared in strain. She got to her feet gracefully and looked down at me and said in the voice of temple bells, "Rest now. Serena will be here soon. I've never fully introduced myself, but that can wait. We have so much time."
I shook my head. "Alicia said there was no time--"
Amara smiled and entranced me. "Only in her dimension. Here, there is every time. I am everlasting, after all. I love and guard your entire mind and brain, remember? I work with my sister, Amber, who encases everything in your varied forms of spirit and soul and energy and power. Alicia and Serena are limited. Amber and I are unlimited. We shall be with you until the end of everything. You hurt badly. I sense it. Serena will be here in a moment. I will stay with you."
I stared at her. "I've never known you until now. I love you."
"Yes. You were meant to. I am the culmination of your neurology, your neurochemistry, your biochemistry, the stuff in your head that help make you the things that are you. A Self. A Mind. A Brain. I change as you need to change. I will always be here."
Amara my immortal began to slowly fade, and Serena came running. She gathered me in her arms and murmured soothing words, and suddenly I felt as calm and as safe as I ever could.
And then I awoke, and I was a person climbing the stairs.
And I climbed the stairs, sobbing and forcing myself, and at the top of the stairs I lay crying, and then my husband found me and helped me to my work couch and gave me water, and I couldn't talk about my girls, but it was all right. I would be all right.
brightrosefox: (Default)
Why is it that, in most dreams where I am in physical danger, I am unable to scream or move quickly?
My last dream involved a bad fall and crash at the top of the stairs, while a large group of people were downstairs having a small quiet party. Something supernatural was with me, something insidious. I grabbed the stair ledge and pulled myself up to a kneeling position. I yelled my husband's name, but it was only a whisper. I couldn't call for help, not with the shadowy creature surrounding me. I was moving so slowly. It felt as though nobody was in the house but me, me and the cats.
And abruptly, I realized that nobody was in the house. Adam was at work. There was no party. The cats were all downstairs. It was only me and the shadow entity. I struggled to call on my internal resources, my spirit guardians, but even my psychic voice was muffled. I was not afraid. I was determined. I was badly injured, and I only had myself, and my powers to create weapons and defenses were drained. I stopped trying to stand. I knelt there and mouthed words, calling on the water in the bathroom, the air circulating around the house, the earth under the house, the fire downstairs used to light the gas stove. I pulled in all into me, and with a desperate burst, I unleashed it. The shadow creature shrieked and vanished.
Without any warning at all, the house filled with presence again. There was that quiet downstairs party. I whispered my husband's name again, struggling to turn it into a cry. Someone must have heard. Adam came up the stairs and found me, sagging against the door of the bathroom, my nose bleeding. He spoke to me. He half-carried me to the bedroom and helped me lie down. He brought damp towels and tissues and water with electrolytes. I managed, somehow, to tell him that a negative spirit had entered the house and stole my strength, and I pulled all the elemental power I could to drive it away. He was very proud but also puzzled, since the house was supposed to be powerfully shielded and guarded. I was crying but I didn't mean to cry. It was just a reaction without intention. He stroked my hair and curled up with me, and me took my hand and fed me energy and power and strength, and he said, "Go to sleep, my darling. I'll be monitoring you through our psychic bond and everything will be okay. I will strengthen the wards." He needed to check on our friends. He would back be up soon.
The dream ended there.

It has been something of a recurring thing: My slowness in dreams. My exquisite agony in dreams. My whispering words in dreams. Sometimes I can barely walk for the pain in my hips and knees. Sometimes I can only speak with thoughts instead of physical words. Sometimes my body is wrapped in a floating translucent shell and it is the only way I can move. In my dreams, the pain is so much worse than in reality. But I have access to weapons of all kind and I feel safe, even if something horrible grabs me.

When I was a child, I had flying dreams every night. Even astral projection. Like my father and cousins in their younger years. And if a harmful person appeared, I just waved my right hand fiercely, shouting "Shoo! Shoo!" to make then disappear.

When I was a child, I dreamed of dragons, of ancient tortoises, of unicorns mixed with white tigers, of phoenix birds with feathers of every color. Dragons have never been dangerous to me. Even if some were, there were always other dragons who were benevolent.

It is why I always bristle when I read an article comparing chronic pain to dragons. The only way I can see such battles happening is dragon against dragon. And I am a human amalgam of dragon, phoenix, tortoise, unicorn, white tiger, and fae, wrapped in the skin of a moonlight witch.

Then, why do my dreams cripple me? The only reason I can think of is to teach me to use the insides, the powers coming from my spirit and not my body. My body is very important and vital to me. But perhaps not so much in my dreams.

And I think this piece of art, beyond anything, is one of the greatest ways I can understand myself. Every time I look at it, I weep. I even have that same cane. I know Shinga and I barely know each other, but she knows chronic pain. She knows what being a warrior means. She was in the US Army and was badly injured and treated so poorly during therapy that she has severe PTSD. She is disabled badly. She knows battles. And I want to hold her and hold her and tell her what this means to me.

http://shinga.deviantart.com/art/Awaken-Warrior-and-Rise-378439320
awaken__warrior__and_rise_by_shinga-d69b9nc
(Note: Please please refer to Shinga before borrowing or using this image. Please use the Deviant Art link. This is her work. Copyright Shinga. The only reason I displayed the actual image was in case someone can't click on the link.)
brightrosefox: (Default)
"I think this is a broader cultural thing surrounding the commodification of people, especially women. People are seen nowadays as little interchangeable cogs... which causes some nasty shocks when the System's values bump against our more organic passed-down cultural values. Most times we do the cognitive dissonance dance and rinse and repeat.
This time, though, the kids involved posted up tweets so raw that it was a mirror reflecting the beast itself. These kids know that the greater world doesn't give a damn about them, or about anything, really, so why should they give a damn about anything or anyone that wasn't of use to them? The victim was just a passed-out piece of meat for them to use as they saw fit: another commodity to be used and disposed of.
...just like they see the football stars they emulate get used up and spit out by the NFL, useless in their mid-thirties due to repetitive injuries. Just like they see their working folks get laid off and replaced by cheaper overseas labor. Just like you get a car, use it up, and when it breaks down and you can't fix it, you throw it away and get a new one.
This is what the greater context of society teaches us. It's the subtext in everything we do. We're all whores now... and appallingly disposable."
-from a Facebook friend, in a discussion over rape culture and how teenagers are affected

And also I am in a ridiculous battle with my biochemistry and neurochemistry. Hi, I'm Joanna and I'm a recovering anorexic. I refuse to shift the blame to just my brain signals and hormones, but that is about ninety-nine percent of what is happening.
I love eating. I want to keep eating. Food is awesome. Food is the best thing ever.
There are actual signals and nerves running between my stomach and my brain saying "NOPE." If I have an inkling of "I don't want to be fat" thoughts, I can still feel them pushed very, very far back. They are there, which is that percent I will take blame for. Because that is sickness. And it has left scars before. And those scars can be ripped open easily. And it is now my job to make sure none of that happens.
So this has become actually less psychiatric and more neurological: Fuck you, brain, I'm going to eat whether you want to or not. Fuck you, digestive system, you are waking up and taking solids in whether you want to or not.
For me this isn't about anorexia for the sake of fat/thin, this is about a "nervous loss of appetite caused by possible signal problems involving the ventromedial hypothalamus, which is responsible for feeling satiated and full." Because if something goes wrong, the leptin hormone literally stimulates anorectic nerve cells, which in turn inhibit orexigenic nerve cells, which means that the actual desire to eat is stopped. Which is just a way of saying Hunger And Appetite, You're Doing It Wrong.
Also, please, no "I'm so sorry, I know how you feel"s. It is hollow (ha) and too quiet. Give me your experiences, your anecdotes, the healthful foods you love best and the junk foods you resort to. Braid it into stories that can make me giggle and sniffle and want to hug you.

I don't want to be so raw and sad, but the world is really pissing me off lately.

It has been raining wildly all day, and the cats have been climbing all over me, and I've been in pain and fatigue, so Doing Things has been mildly difficult. They are getting done slowly.

Also, "Just drop me off at that asteroid over there" is the meme companion to "I don't want to live on this planet anymore" - both said by Professor Farnsworth on 'Futurama' after he realizes how stupid and awful people can be.

Human brains. Fantastic, fucked up things.
brightrosefox: (Default)
So, as my Facebook friends have learned, I am dealing with a literal "nervous loss of appetite" - literal in that my biochemistry and brain chemistry is so fucked up that my hormones and neurotransmitters don't remember what actual hunger and appetite feel like (hunger and appetite are not the same, also).

See, when I had anorexia nervosa as a disease, it was always, "I don't want to eat"- and "I don't want to be fat" was an afterthought. The same thing is happening. Now the afterthought is "Well, I wouldn't mind losing ten pounds, it couldn't hurt, right?" And oh, dear ones, that is not a good thing.

So, the goal now is to teach my brain and my body to accept solid foods in the mornings, without my brain screaming about how weird it feels and without my stomach wanting to make it go away. And here is the thing: I have not lost much weight. According to my special scale, I lost maybe two to three pounds and my body fat percentage dipped a couple of numbers. Not a big deal, right? Right? Ha ha, silly, nope.
My doctors have been informed. They have been guiding me, nutritionally. I have several friends who are actively studying nutritional science and they have been guiding me.
If I can eat only half the sandwich, I will eat only half the sandwich, and I will save the other half for a couple of hours later. In the mornings, instead of taking my medications with coffee with cream and milk, I will actively make cereal, oatmeal, a nut butter/fruit preserve sandwich, eat as much as I can, and then take my pills. Yogurt is not really considered solid food, although my brain totally thinks it is. My body adores dairy and doesn't give a fuck what anyone thinks. Cheese, whole milk, full fat yogurt, bring it on. Also fruit. My fruit cravings have been wild. Now, I've been told to watch out for sugar, because "it is possible that all those cravings are for the sugar in the foods and not the actual foods" - on which I quickly called bullshit. My sweet tooth hasn't been very active. Certain fruits and naturally sugary foods taste much too sweet. I can barely handle ice cream these days, filling as it is - although frozen yogurt with fruit is tolerable. Of course, there is a chance they are right - everything is possible, probable, and plausible. But at this point, I just need to eat something. And if there is a slice of cheesecake available, I will take a few bites just to start the whole "hey, time to wake up the digestive process" thing.

So, I welcome anecdotes and experiences and even suggestions. But I don't wanna be policed, if you know what I mean. Like if a morbidly obese celebrity or a very very skinny celebrity gets targeted by a gossip community and everyone says, "Well, I'm just *concerned about her health*" and then nobody produces their medical degrees or doctorates, is what I'm saying.

I love food. I am sad. I want food in my belly and I don't want my body hormones and brain chemicals getting in the way. And above all I don't wanna start thinking that I'm going to be fat, because that means The Worm will come back, and The Worm is evil and will rip open all those scars like paper.

So, I love you guys, and if you want to say anything, go for it. Just try not to be The Health Police. I mean, unless you actually have a degree in science, medicine, health, nutrition, etc. - or you are at least studying
that sort of thing. If so, by all means, instruct me! <3
brightrosefox: (Default)
Some people have been asking me why I wear so many specific bracelets in varied order. It isn't because the stones are beautiful, though they are. It is for neuromuscular and sensory processing balance. See, since my left arm, affected by spastic ataxic cerebral palsy, often feels ghost-like, I wear multiple gemstone stretch bracelets to give weight to that arm, so I can feel that weight, look at my arm, and think, Oooh, pretty stones, and oh, right, I should use this arm. Raw amber, charoite, lepidolite, kyanite, tourmaline.
On my right wrist, the balancing act is more of a counterweight. The raw amber, polished amber, fluorite, and lepidolite help me concentrate on my total physicality. I am inside my mind too much. My body needs me just as much, even more.
It is the same reason I wear gemstone rings: charoite, lepidolite, seraphinite, kyanite - the gemstones that work best for me, alongside amber resin. On my left hand are my green gold wedding ring and my inherited yellow gold band. On my right hand is my heirloom engagement ring. I need balance, once again. So I wear a ring on my left index finger and two rings on my right middle finger. Balance is vital for me with my particular set of neurological damages. It helps that all these stones have metaphysical properties that work perfectly for me.

braceletsleft

braceletsright



ringsleft

I do wish my left hand would not tremble so badly, even when propped against a surface. But that is what I live with and I respect it while I seek to improve and strengthen it.
brightrosefox: (Default)
Okay, so, I need to tell this story... because. Just because. Facebook is a breeding ground for trolls who try and yell at me because I am not like them. So, here is a story.

When I was fifteen years old, leaning toward sixteen, I had a recurring dream. I was married. I was twenty-six. I was in a hospital bed, in labor, and the bed was tilted up so I was kind of sitting. My belly was swollen. Cramps and contractions forced me to bear down, and somehow I knew it was with the same muscles used to move my bowels, except I'd had an enema. I had no idea how the pain was, so in the dream there was extreme pressure with menstrual-type cramps, and I was sobbing. Someone was holding my hand - my husband. I looked at him but his face was shadowed. All I could see was that he had bright blue eyes. I knew his voice was a tenor voice. I cried, "This will kill me. I can feel it. I'm going to die." My husband said, "No, no, sweetheart, you will be fine. What should we name her? Our daughter?" In a fit of pain, I screamed, "Amara. With your grandmother's name in the middle. Amara! Everlasting! Immortal! It will kill me but she will live!"
A doctor told me to PUSH, and I PUSHED, and I very clearly, intensely, felt SOMETHING being pushed through my vagina, something huge... and then it was pulled, PULLED. I was sobbing and screaming and I could feel my hips shattering. A voice said, "Don't cut the cord yet, wait until the fetus takes all the nutrients." And I sobbed softly, "Taking everything. I give myself up."
My husband's tenor voice said over and over, "There she is. I love you." All I could see, through a haze, was a human-shaped thing covered in blood and white goo, squealing like a kitten. "Everlasting immortal voyager through life," I murmured, and I closed my eyes.

I just remember that pressure, that disconnection, the thing TAKEN OUT OF ME, the way I couldn't feel anything below my waist afterward. I don't know if I died. I don't know if I went comatose. I just know that I was twenty-six, my husband had blue eyes and a tenor voice and his name ended in -m, and it was the most horrific experience I could imagine.

And here's the thing: When I was twenty, I met a man with bright blue eyes and a tenor voice, named Adam, with two grandmothers who had names starting with B. One grandmother was named Beatrice - "Voyager Through Life" - and when we dated and considered future kids, he suggested that a girl's middle name could be Beatrice. But then we decided that children were not for us, not after I became so ill with various disabilities.
We got married when I was twenty-six years old. The wedding was one of the most stressful and frightening experiences of my life.

Now, those people insisting that I should have children, that "I would be a wonderful mother" (an insulting slap in my face), might see this as a premonition. It was a premonition. I predicted the person I would marry. I predicted the age at which I would go through an extreme change in my life. I predicted that I would go through an intense, frightening series of medical problems that would change my life.
But it had nothing to do with pregnancy or childbirth. Nothing at all.

This is what I wrote on my Facebook:
"Dear certain people with children who are being very annoying and loud and religiously fervent:
Yes, yes, your children are beautiful and amazing and the greatest creations you have ever created and the absolute loves of your lives and the brightest stars in your sky and your reasons for living and the greatest most talented most gorgeous most intelligent children ever, I get it, I get it. Good for you. I'm thrilled, truly.
Now quit insisting that I must have children of my own. I don't want any. Never wanted. Will never want. Do not want. Medically should not have. I have reasons. I don't care what you think of my reasons. Go away and stop talking about this to me. I don't want children, I don't want to get pregnant, and I don't want to automatically love your baby. If I have to save this and use this as a Standard Response every single time, I shall. Stop telling me I must experience your overwhelming joy, the way you never knew true love and pure happiness before your children. It appears that you are experiencing plenty of overwhelming joy and true love and pure happiness, so you seem to have more than enough. Please enjoy. I will be over there, not being you."

The reason I revealed this dream was to explain that not everything means something literal. And also that I often have precognitive dreams - which is hard to do, since there are so many futures and they're all fluid. Maybe in an alternate reality, I did have a child. But not in this one. Never in this one.
brightrosefox: (Default)
Migraine migraine migraine MIGRAINE MIGRAINE NECK PAIN JAW PAIN NECK PAIN JAW PAIN SINUS PAIN.
FIBROMYLAGIA FLARE AND FOG AND ALSO MEMORY DISINTEGRATION AND DYSPHASIA AND HEMIPLEGIA AND ATAXIA AND THIS IS SO FUCKING STUPID.
Oh hello, pharmaceutical and nutraceutical medications. Please help me before I go insane. Thank you and I love you.
See? I'm not being poisoned. I'm not taking placebos. These pills are actually Doing Stuff. So, Dearest Lovely People Who Think Drugs Are Poison and People Who Think Supplements Are Useless: Fuck You, I Am Feeling Better. La la la la. I love you.
brightrosefox: (Default)
Stuff I want in 2013:

Intangible/Psychological:
Improve my brain.
Allow myself to work with my crazy rather than against it.
Temper my specific particular OCD, depression, and anxiety issues, and realize that it all must be treated as a severe illness that can be healed.
Be here now.
Be more self aware and less self absorbed.
Stop myself before making rash, unnecessary decisions.
Realize I have what I need and want and only take more when it is truly necessary.

Tangible/Physical:
A Samsung Galaxy S 3 smartphone. My ATT contract will allow me to update in July, so I must be patient.
Money to get another hair coloring at Ulta with Redken Chromatics.
Putting more money into savings, just like everyone else.
Read all the books I haven't read yet.
More healing exercises, stretches, massages, etc. I do what I can.
Write. Write. Write. Write. Write. Write.
Finish everything I write.
Be proud of everything I write; know I will be a success.

Okay...

Nov. 12th, 2012 08:02 pm
brightrosefox: (Default)
Adam just came home from work. We're having stir-fry, with string beans, mushrooms, and bacon. I certainly feel good about that. Next step: Learn to stir fry on my own.

I'm sorry. I'm sorry. I'm so sorry. I shouldn't be afraid. Not if it's only been a few days. My appetite has been odd lately. It doesn't mean anything threatening. I will fall back naturally. I will push myself up. I will be all right.

I'm so sorry. I am thinking of something cheerful and fantastic to post now; it breaks my heart when I vent things like this. But this is my journal; I must document.

No...

Nov. 12th, 2012 07:22 pm
brightrosefox: (Default)
Oh, I don't want this to be bad. Please, Higher Brain, don't let this be bad.
All day yesterday I had trouble eating, and by the time I went to sleep my stomach was sending "starving" signals to my brain. I was in pain, dehydrated, desperate. I got up and had a few sips of liquid kefir to calm my stomach. When I woke up this morning, I was horrified to realize that for the first time in seven years, I felt anorexic. I managed to eat just enough to keep myself well, and now I need dinner and can't even think. Eggs, most likely. Gods, this is not good. I don't want to feel this way. I need to make it stop. I don't want this.

Apologies if I have triggered anyone, but... I don't know how to finish that; my brain just blanked out. I do need food. Right now. I don't want to worry myself. Not yet. But I need to have an eating schedule. I need to eat...
brightrosefox: (Default)
I am a socially liberal moderate with mild civil libertarian leanings and mild conservative leanings; I do not call myself a Democrat or left-wing liberal and I find real partisan politics weird; I like to watch Fox News just for the reporting, which I am entertained by; I have many many friends who call themselves Republican yet do not embrace the extremely creepy insane views that many GOP members embrace; I do not believe Republicans generally are evil or hideous or boogeymen; I feel upset when an entire political party is smeared with a giant stabbing poison brush. I prefer when hate and loathing is directed at all parties.

So... does anybody want to yell at me for not being, say, fully liberal enough or not informed enough or not this or that enough, or for watching Fox News or for having loving Republican friends? It has happened before, and I was highly amused back then. Now I am very curious, because this is LiveJournal and a social public blog, and everyone is an asshole whether we will admit it or not.

I watched the results of the election kerfluffle. I watched as Obama won and the Democrats celebrated with feverish fervor.
I will not discuss my opinions or feelings, but I will say that I feel okay. Not joyous, not sad, not amazed, not worried, not thrilled, not upset, not delighted, not miserable, not depressed. Just okay. Just calm. Just relaxed. Just refreshed. Just fine. Just okay. I don't mind. I don't mind, but I will be very watchful. Obama is not the greatest. Obama is not made of magic. Obama will not make all problems vanish. Obama will make more problems. But Obama will be okay. I will be watchful and I will see.

But I am in so much pain that I can barely stay upright and also my legs, lower back, hips, arms, and wrists are being spastic, stabbing, aching, and burning. So I am drugging myself with Baclofen and Codeine and resting.
And I still refuse to tell you who I voted for.

It's... hard for me to explain. I have an Interesting Brain. See, I am tokophobic, which means Intense Fear Of Pregnancy And Childbirth. I want to block my uterus from accepting conception permanently, firstly for my own fears and anxieties and phobias, and way down the list for assholes who think I'm a breeding factory. I am planning on a tubal ligation or even a coil insert, once I have the opportunity and money and Medicare.
People tell me, "Oh, why don't you tell your husband to get a vasectomy? It is easier! SmileyFace!" And I sneer and smirk and say, "No. Because there is always the possibility that I may one day get raped. No. Because this is my own body. I do not own my male partner's body. I own my own body. My body. And this is what I want to do. My uterus does not define me. I, myself, define me. But phobia is strong. I am not afraid of permanently soothing my phobia. But I am afraid of being stopped because someone has decided I should not. But, see, I am not afraid because of politics or other women or people who hate or anything like that. I am only afraid for myself. And so I would do this only for myself, and not for you."

One day, I will be sterilized. But not for them, never for them. I do things for me. But I voted with my conscience, which wraps around everyone. I will not say for whom. I will only say that I did not write in a candidate, but I love to joke about that. Futurama, Babylon 5, My Little Pony Friendship Is Magic, Firefly. Bender and Garibaldi. River Tam and Princess Celestia. Delenn and Twilight Sparkle. Applejack and Ivanova. Malcom Reynolds and Philip J. Fry.

I hope most of all of that makes sense.

But that is not the point. The point is that nobody should vote only on single issues like abortion, like gay marriage, like small government, like Social Security. But women did because of fear. And I never wanted to be afraid. I never wanted my fears to bleed into my politics. I did not let that happen. Yes, I am fiercely pro-choice in many ways. Yes, I am pro-gay marriage in many ways. Yes, I am pro-gun ownership for all citizens, believing in the freedom to own guns in their homes. Yes, I am pro-death penalty. Yes, I believe that the government should help people like me, the disabled, without looming too close for comfort. Yes, I believe the government should keep their hands out of my wallet, my bedroom, my body, my self.
But I refuse to vote only, solely, on only one of those single issues.
I don't know why that happens so often with people.

I cannot explain how I feel or hope. I will only say that I hope the next four years are not terrible, that we will be okay.
I want to be okay.
brightrosefox: (Default)
I have learned this: I am good at pretending to be "normal" while my inner self cries out in fear and terror and anxiety and self-loathing, curling up against the rockiness of my scarred brain, shivering with open wounds from various hard scoldings that take the psychic form of beatings. I admit, I am a child in so many ways. I still do not know how to handle a hard cold world.
I am in support groups, and various therapies, and I am seeing various doctors, and I am taking various medicines that are working... and yet people still scream and scold me about mental illness symptoms that I really am still struggling to keep under control. I keep saying "This won't go away overnight. I'm not going to get better in just a few months. This might take years."
I am finally happy to know that people accept this. But I am now afraid to answer emails and phone calls from those who would only want to scold me. And if I do answer, my brain shuts down its emotional bits, turning numb and detached and analytic. That is not a way to live.
I am a warrior. I am a dragon. This is my fight. I will battle the parts of me that insist on carrying out symptoms of mental illness, but the only people who can help me are me myself, my doctors, my specialists, and my therapists. The only people who I want to support me are my closest treasured loved ones who actually understand what it all means to be swept away and nearly drowned by mental disorders that keep trying to destroy us...

Postscript: I suppose this would fall under that category of "stop medicalizing yourself, you hypochondriac cripple, grow a backbone and get better already." Sometimes I repeat that to myself; oddly enough, it is like a calming mantra.

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