brightlotusmoon: (Snow White Blood Red Light Pale)
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... )
brightlotusmoon: (Snow White Blood Red Light Pale)
I must quote this, because it struck me deeply and knocked me over and stunned me and amazed me.

From: [ profile] naamah_darling.
I don't know if I can explain it, any more than I can explain why I find anyone amazing, but you're open about what you are and what you are going through. You don't expend energy trying to be normal, and you never seem to even want to. You aren't afraid of what you ARE, even when the things that HAPPEN, sometimes because of things that you are, are scary. You seem sometimes scared of things that happen or that you (body/chemistry) do to you, but not scared of yourself, really. You're fierce. You're . . . we don't have a word for it. The way in which children and animals are alike, that we *call* innocence, but isn't innocence, it's just a kind of transparency and guilelessness-without-cluelessness. You're contradictory, and this isn't a problem. You've imposed . . . not order . . . but some sort of reason and meaning and story on the chaos in your life, and you have made beautiful things out of it inside you. You persist. You change, you are not destroyed. You're mercurial, joyful in the sense of being flat-out at everything you feel and not in the sense of being always happy, you're generous, you're very kind, you're forgiving. You aren't afraid to spend a lot of time working with and understanding yourself, because you know that is important. You are more people than just-the-one-you you. You are comfortable working with shape and meaning and color, when words aren't good enough. Whole parts of you are indescribable. You're a *good person*, while still being strong and fierce, and that is overwhelmingly obvious to anyone with half a synapse. You belong in fairy tales, like so many of the rest of us, writing better endings. You're kind of amazing.

And tangentially, THAT is why when people are all like "disabled people are so inspirational!" I get kinda pissed on the grounds of "THESE PEOPLE THAT I KNOW, they are SO MUCH MORE than a stepping stone for your ego or a friendly reassurance that hey, if those people can manage to get themselves to a beach/a gym/on a horse, you have a good chance of not being an utter asshole failure your entire life, and accomplishing REALLY important things!" and at the same time am like "No, really, we ARE inspirational; you have no fucking idea how 'inspirational' the disabled folks I know are . . . and if you had one iota of their self-awareness you might not be saying such asinine crap."
You want to find disabled people "inspirational?" I'll accept that . . . if what you are finding "inspirational" is their honesty in speaking out and sharing their opinions, their desire to help others, their weapons-grade swearing vocabulary (so many disabled people I know HAVE THAT, it's glorious), their ability to incorporate something literally disabling into their self-image and life when our culture gives them limited scripts and limited opportunities, their persistence in navigating the obstacles placed in front of them not by what they are, but by how our culture and the many dickheads in it unwittingly and often VERY DELIBERATELY make it harder to do so, the fact that they are often poor as dirt but are the most generous people you will ever meet, that they have known pain and so they often know great compassion.


So is persistence, yes, which is why I am always impressed when I see someone who has had to deal with major issues accomplish something that is made particularly difficult BY those issues SPECIFICALLY, but when that sort of thing is nearly always ONLY praised in the context of visible, physical disability, or when it's some completely unrelated shit, that pisses me off.

It's like . . . people are apparently impressed by when disabled people do anything *while smiling*, because that indicates the triumph of overcoming our miserable existence? Or that we have a good enough attitude to forget, for a moment, that we are fucked up and are supposed to be miserable constantly? I don't even KNOW. But these same people aren't finding me inspirational when I'm at my blackest and am hanging on by my last claw, which is arguably when I am being my MOST BADASS. That's when I need to be pulling up my bootstraps and thinking my way out of it with sunshine and baby kisses. But an ungroomed, exhausted, surrounded by laundry, not moving, fat, blotchy, cat-strewn DEPRESSED person staring at a computer screen or TV or at nothing in particular doesn't look good in a facebook picture. "This person: probably exercising more willpower not to give up hope and eat a bullet than you will exercise at any point in your whole life. Stop. Bitching. That. Your. Yoga. Is. Hard." <---- Nobody wants that. (And, while maybe sometimes true, it's also kinda dickly, because Suck Olympics are uncool. The things that have made me most miserable sometimes do not seem to be proportional or make sense. To wit, the hour-long crying jag I had when my last pet scorpion died, years ago. Dude, I cried less painfully when my GRANDMOTHER died. What even the HELL?)

All I know is that the shit people usually talk about as being inspirational is not really very inspirational to me. Like, *if* it's true that Chris Evans really does have anxiety/panic attacks (never read reliable info about how severe his "problems with anxiety" are, though he apparently went into therapy) and he still navigated two MONSTROUS blockbuster movies and associated press events, I find that totally fucking impressive, because I KNOW WHAT THAT IS LIKE, and I know I couldn't handle it. And that's the stuff people don't seem to understand. That's the stuff people latch on to and *make fun of.* Because people who don't Get It can be real dicks about that stuff.
I truly believe that if Namaah and I lived closer, we would see each other several times a week and never get tired of each other's company.
My husband once told me that everyone has multiple soulmates, that a soul can be split into many different parts. I think Namaah may be one of my soulmates. It took me five years to realize that, and that's okay. I like to take things slowly.
brightlotusmoon: (Snow White Blood Red Dragon Witch)
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.
brightlotusmoon: (Pixie Model 3)
I have a spear, a sword, and a hammer. Anything or anyone planning to fuck with me shall be met with brutal and stabby force.

Seriously, though. I know I am severely depressed and anxious and in so much pain and so exhausted by it all. And various support systems are trying to nudge me toward issues that bother them, which I would love to deal with later, just not now, or tomorrow, or next week. In conclusion: I don't care.

And so, until this heavy darkness lifts entirely, I will keep doing what I have been doing for my health. And everyone who keeps repeating all those treatments over and over will be met with the classic "Yes" answer. "Yes, I know. Yes, I am working on it. Yes, I am doing that. Yes, I will do that. Yes, I will see if that helps. Yes, I am hearing you. Yes, I understand you. Yes, we are beating a dead horse. Yes, I am doing everything I possibly can to heal and get better even though it takes time. Yes, my life is not your life. Yes, I know you care for me. Yes, I am taking care of myself. Yes, I know you don't believe me. Yes, I am being completely honest because like I said, these things take time. Yes. Yes. Yes. Yes. Okay. Good. We will talk later. Yes. Okay. Later."

For me, there is a difference between "I want to help you, even if I can only stand with you and hold your hand either physically or mentally" and "I want to help you, so here is everything you need to do, because I want you to do all these things so I feel better so I can stop worrying about you."

In other news, I painted my nails earlier with Sally Hansen Nailgrowth Miracle Nail Polish in Loyal Lavender. A pearlescent shiny pastel pink lavender, essentially English Lavender with soft purple iridescence. It seems to go well with my coloring.
Also, it makes me instantly smile when I look at my fingernails, because the color brightens everything. I need to be brightened anyway.

Later, I switched to a different polish. I've been feeling so creepily Dragon-ish today that I applied Revlon Top Speed Fast Dry Nail Enamel in Ocean, a deep teal with green foil iridescence. It looks like dragon scales. It makes me happy and also fierce as fuck. Plus, the Top Speed products are healthy for nails. Keratin, Silk, Silica, Minerals, Gem Powders.

When it comes to concealing my facial skin - like full war paint - I always choose full coverage: Lauren Brooke Creme Foundation and Creme Concealer, It Cosmetics Concealer, MAC Studio Sculpt Foundation, Physician's Formula Conceal Rx and Circle Rx, Urban Decay Naked Skin Foundation, NYX HD Studio Foundation, Korres Quercetin Concealer, Revlon DNA Advantage Foundation, CoverGirl Tone Rehab Foundation, CoverBlend Concealer, Too Faced Flawless Concealer.

On my warrior lips I alternate between four triumphant red lipsticks: Nars Semi-Matte in Fire Down Below, a deep true blood red; Being True Pure LipColor in Temptress, a dark deep bloody red; Too Faced Lip Creme in Stiletto Red, a deep neutral blood red; Revlon Lip Butter in Red Velvet, a silky rich blood red. Bloody, exotic, attractive, intense, powerful, sensual. I always love things in fours. No matter which color I wear, I instantly feel like a great warrior goddess, even if it is only in my mind.
My staple red is It Cosmetics Vitality Lip Flush in Pretty Woman, but as it is sheer and flushed, I use it every day no matter how I feel.

A brightened face, a wide mouth stained with psychic blood, a scream ripped from a chronically ill body, and I refuse to back down.
*warrior yell*
*spears raised*
brightlotusmoon: (Default)
Since the death of John Travolta's son Jett, I've gotten a few emails and messages wondering if I was all right, if the idea of dying from a seizure scares me, if it upsets me. I also just learned that a girl whom many of my friends knew died recently -- she had a seizure in her sleep, fell from her bed, and broke her neck. Friends were apparently hesitant to tell me, since they had thought it would upset me. I do not know the girl, but my heart goes out to her loved ones.
It's a horrible thing, knowing that people with your medical condition die.
I'm not scared. I'm not upset. But I am realistic. Yes, seizures can potentially cause injury leading to death. Yes, I may have a seizure that will cause a fatal injury. I understand. I live with it.
I live with it.
Jett Travolta's death is a horrific and heartbreaking thing. So is the death of this young woman in my friends' circle of friends.
If you've been holding stuff back from me because you think it will upset me... don't. I need to know these things. So I can understand. So I can know.
Epilepsy by itself isn't a fatal condition. Unfortunately, its main symptoms -- seizures -- have led to death. SUDEP. Sudden Unexpected Death in Epilepsy. Unexplained respiratory failure, cardiac arrest, head injuries, neck injuries, spinal injuries; injuries caused by falling, shaking, striking the floor or a hard object.
When I was little, I had a friend named Cory. She developed epilepsy from a brain injury. One night, she had a tonic clonic seizure in her sleep. She fell out of bed and broke her collarbone. Her family heard her screaming and came running. She eventually had surgery to correct her seizures.
Most SUDEP victims have generalized seizures -- tonic clonic (formerly grand mal). It is common for victims to fall out of bed, or from a chair, or while standing. They strike their heads, they break their collarbones, necks, ribs, or limbs. It's very frightening.
I have partial seizures. Occasionally, they will spread across my brain, becoming secondary generalized seizures. My friends need to know this. I rarely develop secondary generalized tonic clonic seizures, and if I do they are triggered by extreme stress, exhaustion, excitement. Any time I've had a tonic clonic seizure, I have been on a bed or couch, and someone was with me to make sure I did not fall off or hurt myself.
However, there is a possibility that I could develop status epilepticus, prolonged seizures. In such a case, I would need to be rushed to a hospital. If the seizure lasts for more than half an hour, or if I suffer from several seizures in a row with no rest period, there is a possibility that I could fall into a coma, or die. Generally, if a seizure lasts for more than ten minutes, there can be damage to neurons. Complex partial seizures -- in which consciousness is impaired -- can become serious if they don't abate on their own. I've had complex partial seizures that have lasted just under ten minutes that have abated on their own, and I've been severely impaired for hours afterward. Usually I went to sleep and slept for hours and hours.
In conclusion: If you are my friend, and someone you know has died or been seriously harmed due to a seizure, please tell me. Tell me what happened, give me some details. Even if I don't know the person, I want to understand.
I may not fear my condition, but I am wary and cautious and very careful. It's sort of like handling a wild, dangerous animal that could escape and attack me on a whim. I need to know everything I can. I need to manage it and do my best to pacify, understand, and perhaps accept its nature.

Speaking of conditions, the migraine has eased considerably. I feel human again. Coffee and green tea and red tea helped.
brightlotusmoon: (Default)

Apparently, it is.

To everyone who has ever given someone who looks healthy a dirty look for taking a handicapped seat on a train or bus, to anyone who doesn't know what it means to have a chronic disorder that can't be seen: A public service announcement, of sorts.

*stands up*
"Hi, I'm Joanna, and I have invisible chronic illnesses. I'll give the whole list, if need be:
Cerebral Palsy, Epilepsy, Fibromyalgia, Asthma, Migraines, Raynaud's Disease, Sciatica, Lordosis, Arthralgia, Anxiety disorders, and Anorexia Recovery.
You can look those up if you need to. Suffice to say, my body and brain are pretty messed up, but it's not all my fault, it's just how life is.
If you looked at me, you wouldn't know I had anything wrong with me. I don't use a wheelchair or a cane. I do have a limp, but it's pronounced mostly when I'm tired or not concentrating on walking straight. Sometimes my left arm does funny things. But no more than anyone else, really.
I can't drive, so I take public transportation. I can work a day job and I'm pretty good at it, but I come home exhausted and in agony most days, more than anyone normally should be. But still I live a totally normal life. I have an extremely positive outlook and an upbeat attitude. I deal with my symptoms through both traditional prescription medications and holistic natural supplements. I do yoga and Pilates, I meditate, I perform acupressure on myself. I haven't slept well in a long time, but I try to have as much energy as possible during the day. I do as much as I can before I collapse, because I believe in not being defeated. I try not to make excuses or make a big deal. I save my complaining for this journal and for my husband, who complains with me so it's okay. I love to smile and make people smile. If a friend is in pain I will try and push away all my own pain to help. I do my best to be as good as I can be, even if it doesn't always work.
You wouldn't know it to look at me. But this is what an epileptic looks like. This is what someone with fibromyalgia looks like. This is what someone with invisible chronic illness looks like.
I am in pain every single day. I live with the risk of electrical storms in my brain. I live with the risk of muscle problems, circulation problems, nerve issues, debilitating headaches, panic attacks, and lung problems. I will be this way for the rest of my life.
But I have a life, just like you.
And I look just like you. Except I look like me. Normal. Ordinary. Nothing wrong, right?
That's why it's all invisible."

Your turn.

Be seen.

Thanks to [ profile] shadesong for posting about this. As she says, "Let's not be invisible. Got an invisible chronic illness? Post about it. Show the world you're here."

Note to LJ friends:
I know that you all understand me, you get me, you know me. I'm talking about the people who don't. Pretend I'm on a soapbox, speaking to a large public audience, many of whom honestly don't get it.


brightlotusmoon: (Default)

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