The Return To Innocence

...hush now; let me speak...
And sometimes there are days when all you can feel is that pain-filled urge to fly and fall, and all you can think is "If only I could make the world fly and fall with my brain; if only I could win my own game, always."
( Read more... )

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...

Because part of All The Therapy is blogging my feels. And this was short enough anyway.

'kay.

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

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

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

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

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

(Alice is from Alice in Wonderland and Elsa is from Frozen. Because of what happens to them. Etc. I actually still have not seen Frozen all the way through yet. I will, obviously, and it will be many times. But I relate desperately well to Elsa, her hidden aspects, her representing disability, autism, childhood abuse, chronic anxiety, PTSD, personal orientations, and her love for a sister beyond a potential unnecessary husband. I only have chosen sisters and I love them so hard like the stars.)

Some postictal stuff happened. Some preictal stuff happened. I don't recall the ictal stuff. Yesterday and the day before were fascinating blanks. My entire lower back, from muscle to nerve, screams in pain and then cries in pain. That has been the normal thing. So, normal Shrug.

I've been reading books. I've been watching the Simpsons marathon on FXX when I can. Occasionally, I've fallen asleep to it. What a lovely idea.

The extracts of mangosteen and noni have done their best to help with pain and such. I approve.

Really, that's all I wanted to say. The physiatrist prescribed twice a week sessions for an hour and a half. My therapist, Michael, looks like a cousin of actor Jensen Ackles. We are doung slow gentle sets that engage all the muscles in my lower back, pelvis, and thighs.

Also, the Zanaflex has been fantastic.

Sometimes I forget that this is the place I can always come to when I need to vent.

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

So, anyway.

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

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

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


So, anyway, all my medicines and treatments have been wonderful and ideal. Yay.

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

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

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

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

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

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

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

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

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

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

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

So. Other things...

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

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

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

My mom keeps telling me that I've fixated too much on being autistic, on advocating, on activism. She suggested that I just BE. I'll take it.

Nnngghh. No. Nope.
*breath*
PAALSYY. *fist-shake*
*also literally*
*also thumb in palm, finger flexion wrist flexion, shoulder internal rotation contracture forearm pronation, elbow flexion, clonus... plus spastic hypertonia anyway and also fibromyalgia flare, also stabbed hips. Because fuck everything, that's why*
...*mutter*

A hot bath was mentioned. I requested the amazing secret to getting in and out of a bathtub when it hurts bad enough to scream. It seems there is no secret, just more pain and doing things anyway, because decisions. Magnesium salts, then. Magnesium oil massage, then. Yes.
AUGH. IT HURTS. CRIPPLE SMASH.
Oh, hey, the narcotics and muscle relaxants and anxiolytics are starting to do things. Heeeyy.
Still hurts, but heeyy. Walking. Look! Stairs seem possible again!
Still hurts, though. Just meh now.

Look, I keep telling them, mild counts. Children who have it grow up. Into adults who have it. Adults who are still disabled. Adults who are disintegrating as they age. And mild still counts. Just because I am not using a wheelchair doesn't m-
Oh, fuck this. I'm exhausted. I already went through it with them about the autism and the partial seizures and the OCD and the ADHD-Inattentive and the dyscalculia and the lordosis. And the pharmaceutical drugs alongside the holistic drugs. And I like talking to educate. But they don't seem to be listening well. They make me tired.
http://cerebralpalsy.org/about-cerebral-palsy/symptoms/eight-clinical-signs-of-cerebral-palsy/
*

http://unstrangemind.wordpress.com/2014/04/20/labels-are-for-soup-cans/
This is beautiful. Although, I've heard the term "identity" used in place of "label" and I think that's a cool alternative. But I, personally, will use the "label" term for myself, only. If someone else is fine with it, I'll apply it with them. If someone is anti-label, I will use whatever they use.

I've seen similar issues in gender: Some genderqueer and genderfluid people who do prefer the terms "male-bodied" and "female-bodied" often get scolded for not using "assigned male/female at birth" - but if that is the term you wish to apply to yourself, nobody should scold you for it or insist you change. If a person doesn't want to use the term "label" for themself, they shouldn't have to. But nobody should scold or insist that others stop using labels as identification.

It's like that whole "You shouldn't define yourself by your disability!" I would ask, "Why not? It is a huge part of who and what I am." Then again, I believe this may be part of a divide between those who were born disabled or acquired it so early in life that it is all they know, and those who acquired it after a life of ability/being able-bodied. For example, I take my being disabled seriously, and I have always seen it as a strong part of myself. However, because I was always told to not define myself with it, I learned to push that part down. Now I feel free to express it, now that I've been surrounded by new friends and acquaintances who feel the way I feel, which is wonderful and refreshing.

So, I had what I considered a palsy victory and agony simultaneously.

Depressive episode gripping me hard enough to draw blood, I walked out - no cane, because medicine and meditative stretchy exercise like whoa - and took the Metro to Twinbrook, walked the ten minutes to Congressional Plaza, shopped, stopped to eat sushi, and carried two bags back to the Metro, right side burning and feeling ripped open while palsy left side felt ghost-like and nearly numb. Got to Shady Grove again, took the bus and stopped at the Redmill Center right near my house community, went to the CVS and bought drug refills, limped and shook and spasmed and gasped as the bus dropped me off across from my townhouse community, walked with three bags that felt like dead weights, stopped to get the mail, went home, went upstairs, collapsed, and very weakly, feebly flailed and flapped and cried out "Yay, I did it, go me!"

I got myself belated birthday gifts, especially because the Rockville Ulta now carries
It Cosmetics, which is my top favorite makeup brand in the world, which I just learned today so it was like a cliche of angels singing. I'd been waiting for my Ulta to acquire It Cosmetics since last year, when the Silver Spring Ulta announced they had the brand and that Rockville would get it this spring. YES. I was also flush with coupons and points so I splurged: I got the new liquid peptide foundation and the new thin-brush peptide mascara; and also Ecotools brand konjac facial cleansing sponge made of konjac fibers, because konjac is one of the most awesome internal and external cleansing fibers in the world.

I was in horrid pain, honestly awful bad bad pain, pain that was like trauma pain... and I was happy. Because PAIN pushed me on. And VICTORY. It was nearly joy. And joy is something above emotion, after all.

I knew that my cane might have made my hands more full. But the fact that I was capable of doing all this without a cane... it was just... well, you know. Hemiplegic spastic ataxic cerebral palsy, spastic hypertonia, fibromyalgia, osteoarthritis, sciatica, lordosis, migraine pain, major depressive episode, autistic symptoms making everything loud and bright and I could barely look in people's eyes despite cheerful conversations. I did STUFF. I did stuff that made me feel good. I will be in pain for days. But I did it! I think the agony will be worth it, the codeine and the tramadol and the baclofen and the clonazepam and the capsule supplemets of devil's claw and MSM and cayenne and mangosteen and noni vinpocetine and oh my gods I can hardly walk and I am shaking all over and my muscles feel torn up and I want to break down in tears.
But I am proud of myself?
*wipes away tears*

Damn, I really hurt...

...and I forgot to buy milk.
It's okay. I have enough coconut cream, coconut milk, and sweetened condensed milk to work with my coffee until I can get to Giant. Plus a hand mixer blender device to whip it good. At Giant I can grab a lightweight jug of kitty litter and a half-gallon of whole milk, and canned cat food. I can bring a backpack plus a tote to see what will fit how, so I can take the cane.
I'm twitching so much. I wonder if this entire day was one big seizure trigger. Fuck.

Now, today, the day after, I am slowly preparing for my first meet and greet appointment with the new psychologist. My last one got too expensive after I switched to Medicare, and this new woman will work on a sliding scale, with my mother willing to help.