brightrosefox: (Default)
So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:
Read more... )


Jun. 8th, 2013 10:03 pm
brightrosefox: (Default)
The thing about brains is... brains are so complicated. Brains are so complex. Brains need outlets, too. Words are good enough for my brain. I just want to feel safe when I say words out loud. All I've wanted to do was help people. To say, in public, loudly, "You have someone who will listen. You have someone who understands. You have someone who knows what it means. You have someone who will hold you through the worst of the darkness. You have someone who will always shine brighter than any light." Ever since I was a teenager, I was told that I radiated a pure sort of light that drew other minds close. And every time someone who has never seen that light tells me that I'm causing upset or wrongness, that light falters, because how could someone slap me across the face just because I want to speak out through the darkness? I will never stop speaking out through the darkness. I don't care what it costs anymore. I will talk about my brain and its ultimate complications and complexities and sicknesses and handicaps, and somewhere, someone will always be listening. And they will talk about their brains, and we will share our stories, because that is how stories begin.
"Once upon a time, there was a warrior princess born with invisible armor to battle all the damage inside her that would follow her for the rest of her life. For a long long time, there was nobody she could talk to who truly understood. And then, suddenly, there were dozens of people who could understand. And the warrior made it a mission to talk to them all and keep talking. She kept talking even as others misunderstood her, scorned her, and scolded her, since they didn't realize that what she was doing was baring her life wide open, so anyone drawn to her light could share their lives too. She was told, 'Stop putting yourself out there. Stop talking so much about what's wrong with you. Stop focusing on the negative.' And she looked at them, finally, and said, 'No.' Because there was nothing negative. There was no wrongness. There was only her life. And her life was only positive and right. There was laughter, and amusement, and silly things, because even as the pain overwhelmed her, she would keep going, keep laughing. She told stories to those who wanted to listen. She helped many people learn about themselves. She became a teacher, an advocate, a true light in the darkness. She became strong and brave because she had to. And she will have stories to tell for the rest of her life."




I admit, I got a little choked up while writing this. Maybe I do feel much more defensive and upset and naked to criticism than I thought. I'm really, really trying to work on letting all that go. It certainly doesn't help my mental health.
brightrosefox: (Default)
I often "cross post" between here and Facebook, since sometimes stuff I say there, in increments, can be transferred here as stories and ruminations.

Lately, I've been getting genuinely angry at many Facebook friends and acquaintances - and it takes a fucking lot to make me genuinely angry. Multiple people on my Feed have been reading and watching the internet and talk show versions of medical conspiracy theories and tabloids - technincally slightly true, definitely not completely true. "So, these doctors on this daytime talk show or YouTube segment or extremely biased blog are saying that almost every serious health problem in America can be linked to pharmaceutical drugs or the side effects from those drugs. So, have fun taking those deadly dangerous pills! I'm going to be all smug and condescending because I don't take any pills at all even though I probably should for medical conditions I refuse to talk about."

Have you ever had a triggering of your rage gag reflex? Not quite retching, but a mental version of "I am about to explode rage all over this!" because something has truly, severely pissed you off. That has been me over the last couple of days. Some very very intelligent friends have been reposting these ridiculous claims, and my response is usually double facepalm and "For fuck's sake, take everything you read and hear on these blogs and talk shows with grains of salt, please, please, please." Like... okay, I like watching the Doctor Oz show every now and then. Quite often, he is extremely insightful, helpful, and correct. But he is also trying to get high ratings. Same for that talk show The Doctors. Who also used to be Oprah's friends. A panel of four core doctors from different specialties talking about medical breakthroughs, things that are good and bad for you, et cetera. Apparently, a recent episode featured the ER physician claiming that pharmaceutical drug side effects were causing most of the country's medical problems. At which point I facepalmed, went online to trusted websites, and proved him essentially wrong with a few keystrokes. It turns out that after the episode aired, multiple physicians and specialists who were not mere ER doctors called bullshit and blasted the episode and the hosts for being irresponsible. Again, ratings ratings ratings. But so many Facebook friends are falling for it that I wound up "hiding" their posts because I was getting seriously insulted. Funny that this happened after I made a status post about how grateful I was for the pharmaceutical drugs I've been taking to help mitigate my conditions.

Look, pharmaceutical drugs are not the Best Things Ever. They have serious side effects for many people. They alter the body and brain in ways that can be more damaging than the conditions they are treating. BUT. For millions of people, they are lifesaving. They have treated the symptoms of thousands of crippling diseases successfully. For many patients, they are the only options, because holistic medicines, supplements, and alternative therapies haven't worked for those patients (and of course, holistic medicine is either The Best Only Medicine Ever or Quackery Placebo Bullshit). So, to say something like "I heard from a TV doctor that pharmaceutical drugs are the main cause of most medical problems" and to follow it up with a slap in the face like "Good luck taking your pills, guys!" is... a slap in the face. Especially if that doctor was being paid to exaggerate findings or to promote some sort of media, to gain readers or viewers. And especially if the people repeating these claims hadn't seen a doctor themselves in years due to lack of opportunity, fear, hatred, or simple mistrust of doctors - which makes me laugh my ass off. "I don't trust doctors, doctors have never made me feel better, but this one doctor said this thing and I believe it completely and so should you!" It is one thing to drink the Kool-Aid. It is another thing to splash the plastic cup of Kool-Aid in my face.

You know, this is why doctors practice medicine. Practice, not master. It is a practice. Many many times, they get things wrong. Doctors are not perfect. Nobody is perfect. Not even you. So, dear Facebook people, please double check your facts, get second opinions, and actually think about it before you quote what sounds like medical conspiracy theories.

In the meantime, I'm going to sit back, smile, watch silly cat videos, and take my evil pharmaceuticals and my quack herbal supplements that are all maliciously working wonderfully to effectively relieve the worst symptoms of my twenty separate medical conditions. Damn them! *nods*

Also, in May I have my first appointment with a licensed craniosacral therapist. Having had craniosacral therapy twice, with extraordinary results, I am eagerly anticipating this.
brightrosefox: (Default)
More teeth grinding. Oh, of course I should have ignored it. But I unfortunately have this pesky desire to explain how the brain and body connection works when people don't understand disabilities. The very sad part is that people will treat physical illness like mental illness.

You know, "Maybe if you just ate better and had a better attitude, you wouldn't need that insulin! You can cure diabetes yourself!" "You had a heart attack? Probably because you were stressed. Calm down. I bet it wasn't even real." "Hey, I heard that the best way to overcome cancer is to pretend it doesn't exist inside you! You should do that. And stop whining."

And of course, the ultimate disability insults, the phrases that make me see red, that enrage me to the point of Hulk Smash mentality:
"The only disability is a bad attitude!"
"The only limitations are the ones you set yourself!"
"You're not handicapped, you're handicapable!"
"If you truly believe there is nothing wrong with you, you will become enlightened. Disabilities just mean you're holding yourself back from life!"
"You're not disabled - you're differently abled. You can do anything and everything you want!"

And, you know, I get it. I do understand that there can be intense, extreme emotional and psychological connections to having multiple disabilities, whether invisible or visible or both. Some people do tend to let themselves get bogged down by the pain and weakness, the daily crushing symptoms that require new, different ways of moving through life. But you know what? Telling a disabled person that their illnesses really don't matter in the long run is stupid, insulting, horrific, and ugly. And yet that is what people do. I am quoting from actual emails and messages I have received, since I am a disability advocate. I've been targeted by people with childish mentalities who think it is funny and joking to mock me, call me names, and make fun of my multiple illnesses. I've watched it happen to friends, to the point where they needed to cut away from old friends whom they thought they trusted.

It hurts to be told that what is happening inside you is not real or can be easily fixed or is your imagination or is merely emotional stress. That really, really hurts. Even if you suggested that they step inside your head or body, it wouldn't matter to them; they wouldn't be in your mind, so why should they care? Even if they did become disabled, they probably wouldn't apologize to you.
I've deleted and destroyed most of the cruelest missives sent to me, because they don't need to be shared with my loved ones. But I remember them. And you know what I do? I look beyond them. I refuse to be affected. I rise above them and know I actually am more enlightened than them.

There are disabled people who do believe that they should be called different terms, that their disabilities do not affect them nor are part of them. That's wonderful for them. For me, though, when I wake up every morning in agony and go to sleep every night in agony, I know I am disabled. I know my disabilities are part of me. That's how I see it for myself. However, I still life a wonderful life, and that matters so much.

Living the best life I can is what truly matters. The fact that I have disabilities is just one of the facts of my life.

Edited to add:
Look, let other disabled people (oh, hang on, the PC term right now is "person with disabilities" because People Come First, I don't know) say that their disabilities don't make up who they are, don't define them, are not part of them. But for someone like me, who was born that way, who lived an entire life that way... I can't just wave my and and say, "Oh, pff, my disabilities are just things I life with; they're not part of me." Because, in a really technical sense, they are. Kind of like Borg nanotechnology, you know? Sure, I can heal and ease the symptoms, I can slow the progression, I can even remove, heal, and even partially cure a few of the syndromes. Like Seven Of Nine from Star Trek: Voyager. But like Seven, part of that stuff is still in me and I cannot ever get rid of it. If that makes me attached to my disabilities and handicaps, then fine. If that makes it seem as though I treat my illnesses as part of who I am, then I am guilty. I was born damaged enough to develop a dozen separate neurological and neuro-other disorders. I may be able to use various medicines, remedies, and treatments to deal with my conditions... but that doesn't mean that I can cure myself. That doesn't mean that everything will just go away or become separate from me.

End statement.
brightrosefox: (Default)
I see color everywhere. I taste color everywhere. I hear, sense, feel, and connect with color. I cannot imagine a world, any world, without color, even in my dreams, even without my eyes. I speak in color. Everything I touch makes me explode in color.

People ask me why I can't use my mild psychic skills to 'heal' myself. I still have trouble explaining exactly why that is not possible. I can only pull, manifest, and manipulate elemental colors and cosmic colors so much.
I do not expect people to know what I mean. My perceptions are my own. However, I know many people who understand what I mean.

"It's something about the color..."
It's always something about the color.

Often, I dream in octarine, the color of magic. Everything is magic, and everything is color, and color shows me the depths of the universe that I cannot fully reach, not until I join that cosmic wave, full of indescribable colors that define what it means to exist.

This is why religion will never work for me. Not enough color. Not enough expansion. Too much external force. I need more color. I need more inside. I need my whole brain, which cannot happen unless the dead white matter and the damaged neurons somehow move again.

I am my own connection to whatever forces move existence. I am responsible for my own existence. My Higher Brain, my Subconscious, my Quantum Psychic Brain, and my Self are working together to create the most intense positive energy I have ever realized.

My transformation will come only from within myself. I am waiting. I am moving in directions that feel so right to me, no matter what external forces claim. I am opening myself to every past hurt, every negative feeling, and shifting them into the light. It it is a constant cycle, and it hurts so much that sometimes I cannot handle it. Meditative techniques are like lifelines.

The important thing is that I keep going. I keep growing. That is what matters. I am following the colors. I am the colors. I am made of light.
brightrosefox: (Default)
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.)
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:


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