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."
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So! I did a thing a while back. I didn't tell anyone. Anyone at all. And now it is time to come clean, because it's been long enough that I think I can finally shoot down the pushers.

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

The results were...

Wait for it...

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

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

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

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

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

Ahh, humanity. Fun!

"So, do you have kids?"
"Nope. We have three cats."
"Why don't you have any kids?"
"We just don't want kids. Plus, I have medical issues and I don't want to get pregnant."
"Well, you could try adoption."
"Well, it's expensive. And we don't want kids."
"Huh. That's surprising. You sure you don't want to adopt?"
"No. We don't have the money or time or resources, and we just don't want children."
"Well, you could always find the time."
"My husband I will consider it, thank you. But right now, it's not in our plans."
"Ah. Okay, then. Well, at least your cats are like kids, right?"
"Sometimes, yes."

Dear everyone I meet who wonders why I don't have children: Stop fucking telling me I need to have children. Stop Just fucking stop. What part of "I don't want any" do you not understand? I don't want any. Ever. Let it go.

Every time I think, "But I don't WANT to be in this much pain and exhuastion!" that damaged part of my brain with all that dead white matter points and laughs. Neurology likes to make things that much more difficult. Oh, whatever. This has been happening since I was a baby, it will keep happening, and I already know everything I need to do to manage it.

And that right there brings me to this one thought that keeps circulating. The idea behind "person first" language in reference to disabilities. Me? I am against it for my own self, personally, and I finally found a comment that explains why:
"Careful with the semantics. A lot of disabled people object to 'person-first' language because it suggests their disability is a wholly negative thing that should be peripheral to who they are. I usually refer to myself as an autistic person because autism is not a disease or something to be ashamed of. It's just how my brain works, and it's an integral part of who I am. Yes, it's a label, but one that I accept and am proud of, much like labels of race, class, gender, and my family's national origin. To compare disability to, say, cancer has some very problematic implications."

I honestly do not know if it makes a difference if someone was born with disabilities or acquired their disabilities. But I do know that the majority of my acquaintances who acquired their disabilities prefer "person-first" - and often admonish anyone who doesn't, including me. I have very few friends who were born with their disabilities, but I do wonder if they would view "person-first" as a negative connotation. I wonder if it may be because people who were born with it consider it literally part of them, while people who acquired it see it as wholly unwanted since they were "just fine/normal/ordinary/etc" before they became disabled. It is a very interesting thing to think about! I can only speak for myself - aside from those who I know who agree with me. For example: a conversation I had a couple of weeks ago with a friend. He had acquired neurological damage from a car accident and one arm has been semi-paralyzed for several years while his doctors work on treatments that will help him use that arm again. Before the accident, he had been extremely active in the military, in martial arts, in sports. He said, "No, I am a person first, I am not my disability. And so are you. You are a person with disabilities" I said, "Actually, I don't know what it's like to not live with disabilities. My disabilities technically happened while I was becoming a person." He blinked, tilted his head, stared at me, and said, "Huh. Interesting." I said, "At some point, you may regain the full use of your damaged parts and will no longer be disabled. That won't happen to me. Ever. This is who I am. I am both a person with disablities and a disabled person." He said, "Okay. I can absolutely understand that, in your case." "Yes," I said, "In my case. Not everybody's, though. But it's something to think about."

And there is... well... this:
Disabled people are people, and that means that can be rude, dickish, prejudiced, judgmental assholes, as bad as anyone. In fact, yes, someone them do it deliberately, because people coo "Oh, they're disabled, it's okay, the poor things! They don't understand what they're saying!"
It is almost as awful as the "disabled inspiration porn" - example, "Look at that disabled person! She is so amazing, so strong, to do what she does while being disabled! We should all look up to her!"
No. Oh, gods, no. PLEASE don't look up to me. Look, if you want to call me inspirational, refer to the strength and power I have because of my disabilities, not despite them. I may be physically and neurologically weak, but I am incredibly strong in my soul, spirit, etc. It's just how I live. I live WITH my disorders, I don't live DESPITE them. I work WITH them, not AGAINST them. I am constantly and consistently COMPROMISING and COMPENSATING. And guess what? I HAVE LIMITS. Don't dare ever tell me all that bullshit about how "the only disability in life is a bad attitude" or "the only limits are in your mind" because fuck you. I have limitations, and the best I can to is to keep raising them, keep increasing those limits, instead of pushing or breaking them, because trying to break my limits is stupid and will leave me exhausted, drained, agonized, and unable to function. But raising my limits just means that I can go on a little longer without collapsing. That's all.
And this is not saying "I can say this stuff because I'm disabled so it's not discriminatory, ha ha!" This is saying "Many disabled people use their disabled status to be fucking assholes and they know it. Don't think I'm a sweet angel just because I'm a fucking cripple." I really do my very best to NOT be an asshole. Because it's a terrible thing to do. We're all people, we all screw up. But we also do the best we can. Most of us.

I still don't understand why so many people so desperately want to shift semantics like this, especially those who are not actually disabled. Then again, I don't get out much. I was late to the party.

I am writing this revealing post because my Psychic Quantum Consciousness smacked me with Get Well (apply directly to the forehead) and I am finally feeling human. Ish?

My nap refreshed me slightly. So did pain drugs and herbs.
Then I decided to paint my nails twice over: first with Sally Hansen Nailgrowth Polish in Divine Wine and then with Revlon Top Speed Polish in Dress Code.
The Nailgrowth formula will help my nails grow stronger (biotin, peptides, chondroitin, keratin, silk powder). The Top Speed formula will help my nails stay healthy (minerals, gemstone powders, vitamins, silk powder, keratin).
My nails are shimmery metallic dark violet, with shimmery golden dark red bleeding through beneath. I was surprised by the beauty of Dress Code, which is much more purple than Decadent (indigo violet) and more shimmery. Revlon is really good with nail colors. The fascinating thing is how the dark red and dark violet shades are merging as the polishes finish drying. (I am also pretty sure "Dress Code" may also be named "Violet" as the Revlon site does not have a polish color called Dress Code in the Top Speed line, but the shade Violet looks exactly like Dress Code.)
http://www.drugstore.com/sally-hansen-nailgrowth-miracle-nail-color-divine-wine/qxp348841?catid=196092
http://www.drugstore.com/revlon-top-speed-fast-dry-nail-enamel-violet-670/qxp331984?catid=183598
I had also applied makeup this afternoon, since brightening concealer used as foundation and dark red lipgloss made me look a little less ill and exhausted. I felt like an alien, but a pretty alien.

Beautiful colors do help take my mind of how terrible I am feeling.
Eventually I will stop feeling terrible and start feeling, um, in less pain? and now I am finally, finally starting to climb out of this bizarre depressive episode that has been like a rabbit hole lined with steel thorns.
Combined with one of the most severe fibromyalgia attacks in recent months or even years plus attacks from the various sydromes associated with spastic ataxic cerebral palsy, the depression shattered me for quite a while. I am deeply grateful that it began lifting just as I desperately wanted to lie on my psychic battlefield in a deep pool of my own psychic blood, too tired and too drained to keep fighting, willing to let my pain monsters grab me and take me like a trophy to wherever they live when not hunting. I didn't feel alarmed enough to call my doctors, I just felt desperate to sleep for a day straight until I felt human again. I honestly don't know what it's like to feel so darkly depressed, but I would probably admit I was getting fairly close.

All I can say is that I really am feeling better, covered in sunlight and moonlight with healing powers, since I am a witch and a pagan after all. And I can thank every friend I have for helping me, whether they knew it or not. And I can also thank my Higher Brain and my Subconscious combined, which I like to call the Psychic Quantum Consciousness, because quantum brains are cool.

See this entry for various explanations and stuff: http://brightrosefox.livejournal.com/1570608.html

Adam and I took advantage of Venus' last hour across the sun. We did a private pagan ritual, charged my amber bracelet, made love and played with magic, discussed magic, and then discussed the fact that my psychic senses were much stronger than usual. Adam theorized that because of how I entered the world, I've always been deeply connected to the spirit realm, as it were, and to some psychics and magic practitioners I seem intensely bright and shiny while to other practitioners I seem dim and closer to ghosts; in any case I seem to have an ability to sense and attract supernatural and paranormal energies. I used to be like shiny candy when I was in college. When my friends went on "ghost hunts" they took me as a sort of bait. Adam says I shouldn't be frustrated that I don't actually know what all my talents are, and that nobody can tell me except myself. Which actually is frustrating, because beyond the sensing and attracting, I have no clue.

Anyway, enough magical thinking gibberish to make skeptics laugh forever, I have actual reality to think about for this post. Well, other than wanting to open a discussion about Humanistic Paganism which I include in my wild menagerie of weird beliefs (agnostic polytheism, pantheism, eclectic paganism, humanistic paganism, shamanism, animism, cosmic consciousness, transpersonal psychology) that are probably contradictory, but whatever; I refer to the great speech in Neil Gaiman's "American Gods" in which Sam tells Shadow what she believes, which is lots of very awesome things.

Yesterday, Adam and I went grocery shopping specifically to sustain me for the next two weeks, as Adam will be working in other states too often to come home. Today he goes to Pennsylvania and returns on Friday, but after that I probably won't see him for most of June. The cats and I should be perfectly fine, and if I need anything I can call a friend to help.

I can't talk about the death of Ray Bradbury yet. It will make me cry again. I will go through my library and pull out every Bradbury book I own and pile them up and sit there, watching them and meditating, and then I will read all of them, one by one.

On the train this morning, as the question was joyfully asked and expanded on (and she kept talking fervently) and I replied as simply as possible, this went through my head.

Thank you very much for asking when my husband and I will start having children. I know you are just being polite and curious. However, you are the [insert number] person to ask me that since I got married. As I have explained to all the others, I will have children when I am ready. It may not be for several more years. I do not feel that getting pregnant, giving birth, and raising a child is something I want to do right now.
Also, while I appreciate your curiosity and odd fascination concerning the future of my womb, I find it slightly unsettling. I am afraid I don't see how my sex life, the health of my reproductive organs, and the activity of my uterus have anything to do with anyone but me and my partner. I wish you all the best for you and your [current/potential] offspring, but you really do not need to concern yourself with me and mine. Also, please get that glazed gleam out of your eyes. It's a little frightening.
Thank you.

Really, the woman seemed a little... zealous. It made me want to cover my lower abdomen with my arms and tell her that no, she couldn't have my future children.

When I talked to Adam last night, he told me that the job had been pulled off -- not a complete disaster, but still cutting it close. He said my mother had called him to give her support; that was cute. He was with Bane; Hi, Bane!

Mom and I wound up in an interesting conversation about my childhood and my personality, after discussing my medical conditions. Mom still believes most of my physical pain and fatigue issues are due to my allowing stress to overwhelm me (that's honestly not it; wouldn't it be nice if it were that). I tried not to bristle, because for many people, that sort of thinking leads to "It's all being exacerbated in your mind and by your thinking; so part of it is technically your fault." She made some very good points, but I still don't believe that the majority of my afflictions are nearly illusory and could be simply controlled and almost cured if I "just relaxed." I keep meaning to send her stuff on the harsh reality of anorexia and how most sufferers really don't have much choice, how their thoughts are influenced by outside compulsions; but I keep forgetting. I don't want to argue. I love her dearly, more than almost anyone, and arguing with her just makes me more upset.

Fuck, I hurt. All the muscle groups in my body are burning.
Flare.