The Return To Innocence

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...

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.

Because it is too important to not keep reading over and over. Also, spears.
http://internal-acceptance-movement.tumblr.com/post/61136577036

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.

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

(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.)

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

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.

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.

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...

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.