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Thank you everyone.

I do not even know what to say, I am gobsmacked. Thank you. We still need help but thank y’all so much for the help that has already happened. I have cried with joy and gratitude, just sobbed uncontrollably, I love all of you, including the ones that I don’t remember. Which is more than I want to admit. It ain’t personal, it’s my brain. Not kidding about being a slow learner these days.. I might have been something else once, but I am slow now, and that’s probably the epilepsy. But thank you, thank y’all so very very much, the depth of gratitude and love can’t be exaggerated. Including John. I am sorry I had to make that post.

Posted in history, people, Saturday / samedi / sábado / lördag / Sonnabend or Samstag, Things I try to hide, Values & Ethics, Weave of Traditions

I hate to post this right now.

‘Because the man in question has helped me a good deal. We have a decent relationship and he is amazingly helpful and has sent me things that may well be the only things keeping alive. Nothing is simple in this world. Remember my grandfather’s fiddle. Only this man is not as bad as my grandfather, not by far. He has learned his errors. It is possible. And that is important. People think it’s not possible and they give the perpetrator no chance of redemption. That helps nobody. There are people who are beyond hope but in my case that is not true. But I have to talk about this. It is awkward because he just helped me a lot. But it is true regardless. So I have to say what I have to say, to bear witness to something most people refuse to acknowledge, and I have been putting this off far too long. Understand this post is not to punish the perpetrator, it is to explain what is possible, some things that most people do not think of.

So. I will call him John to be as anonymous as possible even though some of you know who he is.

I was molested from at least the ages of 11 to 15 by John. I have been hurt by other men, including something i am now told as rape (someone put his toes up my butt) but John did the worst damage.

It is easy to tell you how John threatened to butt-rape me. How he rubbed his penis on my butt. How he did sexual things to me that I was entirely unaware of at the time (Lolita has some scenes that explained to me how that is possible). I told him “Oh that is okay” and he very guiltily said “No, no, that is worse.” He feels remorse and went to therapy and tried to learn. He doesn’t even date now. These are facts. They are not the whole story but they are facts.

Anyway, so, the thing is, everyone things that child molesters are all pedophiles. That is, that they have a sexual orientation that gives them an irresistible attraction to children that they have trouble not acting on. But the most important message in this post is that this is not true.

So what is true?

I was molested because John was a misogynist, a big-time misogynist.

Most important message in the post.

The term incel didn’t exist back then. I know the history of the word, that it wasn’t always bad, that a woman invented it. But it has come to mean exactly what John was.

It matters that I am a woman. It doesn’t matter my inside gender. It matters that I am a woman, as in I belong to the class of people known as women, and misogyny is the hatred of that class of people. And that doesn’t change. And yes trans women are also women, I am not denying that. But I am also a woman and I can’t deny that. And I mean for the purposes of who is subject to misogyny. Or transmisogyny. Any kind of misogyny, and you are a woman for all practical purposes.

So.

John set a date by which he would marry.

It didn’t happen.

He picked a woman to marry.

She didn’t want him.

He could not accept this.

He tried to date a string of women, unsuccessfully.

John felt entitled to own women’s bodies. And use them however he wanted. And it made him angry when women would not do what we were told. Very angry. Very bitter. Very cruel. He threatened to threaten suicide to force a woman to have sex with him.

So the damage he did to me was not so much the things I listed above.

The damage he did was that he taught me all about women and he taught me all wrong.

He taught me to hate myself.

He taught me it was all right for men to treat women like things.

He taught me sexism and misogyny.

Those have stuck in my head longer than anything else he did. I am still disentangling them like the worst of my yarn monster.

But I asked him. I asked him why. I asked him why he did it.

And John said to get back at the world.

For not automagically giving him a wife when he felt entitled to a wife.

I was the smallest and most vulnerable girl he could get his hands on. Or his dick on.

And I had nightmares about him and back then people thought all nightmares about abuse were abuse flashbacks and 100% real. So I believed in the nightmares, I believed he anally raped me. My only anal rape came later in a psych ward. And involved feet, not penises.

This was the nineties which explains the confusion.

Anyway, for John, this was a power thing, he had power over me, and he used it.

He was not a pedophile.

He was a raging misogynist and what these days they call an incel.

The most important thing is his sense of entitlement to the bodies of women no matter what. And the rage tantrum he threw when he could not get his way with women his age. I was the target for all his rage and fear and disappointment and especially, especially, misogyny.

Which is one reason I need the word woman for myself no matter what else I feel. I can’t escape it. Do you think that little girl who survived being shot in the head, for trying to go to school, would have been shot any less if she was secretly a trans boy? Because she wouldn’t. She was a girl for all practical purposes and sometimes practical purposes are all that count. I am sorry that I don’t remember her name. I am still a little delirious from the hospital.

But I remember something like this:

I do not tell my story because it is unique. I tell my story because it is not unique.

Let me see if I can look up her name. That is from her Nobel Prize speech.

MALALA YOUSAFZAI.

Malala Yousafzai giving a speech. She has black shiny hair, brown skin, and an orange headscarf and robe of some kind, with a lace wristband poking out from underneath. She is holding a microphone. She is very beautiful inside and out, to me. I love her from a distance.

Anyway, she would be facing misogyny no matter whether she is really a man, woman, both, neither, some combination, whatever her gender identity is. For the purposes of misogyny you only need one way to be female, and there are many.

And the same is true of me.

John did not hurt me because he was a pedophile. He hurt me because he felt entitled to women’s bodies and I was a girl he had near total control over.

John, i know you will read this. I didn‘t want to write it in some ways, especially after all you helped me. But I think you, if no one else, will understan why I had to tell people the truth. I’ve been afraid to for far too long. I’ve been afraid. Of what will come raining down on me from family for writing this, of how you might feel after all this time.

But I also know that you take responsibility for your actions as much as you can. And you take what you did seriously. And if anyone is going to understand why I had to say this, it is going to be you. And you know, you know in your bones, like I know in my bones, that if you didn’t want anyone even anonymously telling why you molested a child, you shouldn’t have molested a child in the first place.

Because that is what I was. A child. And you hurt me. And you shouldn’t have. And you filled my head with the worst of misogynist nonsense. You learned. But you hurt me. You hurt me. And not just with your dick. Not even mainly with your dick. Your words and ideas hurt me the worst.

Your misogyny hurt me the worst. And your misogyny, not pedophilia, fueled the whole thing. And everyone needs to know that. For their own safety. Which is why I wrote this. For the safety of other people. Not to “call out” John, but to inform everyone that there are more than one reason for child molestation.

Also, thank you for changing. Thank you for the help. Thank you for getting help. Thank you for taking as much responsibility as you can. Thank you for having a conscience, that puts you leaps and bounds ahead of my grandpa. None of this excuses what you did, and you know that. But thank you for knowing there are exceptions.

And I am not telling anyone else how to feel about their molester. I am not telling anyone to forgive. I am not telling anyone how to feel. I am telling you how i feel. to the best of my ability. That is all. For now. I am sorry, I do not mean to air dirty laundry, but this is too important not to talk about.

I tell my story not because it is unique, but because it is not. Paraphrase, Malala Yousafzai.

I tell my story not because is unique, but because it is not.

Paraphrase, Malala Yousafzai

Thank you, everyone. Everyone. Including John.

Posted in Uncategorized

We need real money badly.

I am going to run out of crucial meds. This is me shamelessly begging for money. You can paypal it to webmuskie@gmail.com. It needs to be real money, not a gift card, because we have to use it at the pharmacy. If the pharmacy is open. And it needs to be a whole lot of money because meds are expensive and we are running out of ones that will keep me alive. Also we really need respite. Laura says a few more days of this could kill her, having to take care of me. I keep trying to take a load off her but somehow making more work for her. This isn’t sustainable and we are trying to survive. So I have no shame in begging, something is massively messed up with my benefits I have no access to them. Please help please someone help ideally lots of people help. Also Laura says her wishlist works now. We are both under unbelievable stress. She has an autoimmune disease that can flare and kill under stress. This is no joke. This is not trivial. We need a metric crapton of real money. Or we will both die here. Everyone dies but I want to die of a disease or old age the way most people do, I do not want to die of preventable stupidity. Please help. Please help us. We are running out of everything. Please, please, please help.

Posted in Developmental disability, disability rights, Epilepsy, PSA, quotes, Self-advocacy, Temporal Lobe Epilepsy, Weave of Traditions

I don’t just have one developmental disability.

I hate labels but this post is all about labels. Deal with it.

I do not just have one developmental disability. This is one reason that I identify more with the self-advocacy movement than any diagnosis-specific movement.

So the developmental disabilities that are official in California, where I come from, are: Cerebral palsy, autism, intelleectual disability, childhood-onset epilepsy, and fifth category (anyone who needs the same kind of care and does not mostly have a specific learning disability like dyslexia, or a purely physical disability (except CP).

I have childhood-onset temporal lobe complex-partial seizures. I also have had, less freqently, absence or petit-mal seizures (where you stare and then totally forget everything that happened), atonic seizures (where you drop to the floor very rapidly and usually injure yourself, it is a sudden loss of muscle tone, not a grand mal/tonic-clonic), and myoclonic seizures (where your arms fling out while conscious for no apparent reason). I may have had other types but that is what I can think of.

Childhood epilepsy has affected me more than any other DD I have, I think. It sounds weird unless you have grown up with it largely untreated or mistreated. It hits you with out of place emotions that you start off thinking are real. It makes everything weird and repeaty. It gives me deja vu and jamais vu. Randomly, but usually in clumps. And I have developed the so-called TLE (temporal lobe epilepsy) personality. The following is from Wikipedia:

Focal aware means that the level of consciousness is not altered during the seizure.[2]In temporal lobe epilepsy, a focal seizure usually causes abnormal sensations only.

These may be:

  • Sensations such as déjà vu (a feeling of familiarity), jamais vu (a feeling of unfamiliarity)
  • Amnesia; or a single memory or set of memories
  • A sudden sense of unprovoked fear and anxiety
  • Nausea
  • Auditory, visual, olfactory, gustatory, or tactile hallucinations.
  • Visual distortions such as macropsia and micropsia
  • Dissociation or derealisation
  • Synesthesia (stimulation of one sense experienced in a second sense) may transpire.[8]
  • Dysphoric or euphoric feelings, fear, anger, and other emotions may also occur. Often, the patient cannot describe the sensations.[9]

Olfactory hallucinations often seem indescribable to patients beyond “pleasant” or “unpleasant”.[10]

Focal aware seizures are often called “auras” when they serve as a warning sign of a subsequent seizure. Regardless, an aura is actually a seizure itself, and such a focal seizure may or may not progress to a focal impaired awareness seizure.[11]People who experience only focal aware seizures may not recognize what they are, nor seek medical care

Focal impaired awareness seizures

Focal impaired awareness seizures are seizures which impair consciousness to some extent:[2]they alter the person’s ability to interact normally with their environment. They usually begin with a focal aware seizure, then spread to a larger portion of the temporal lobe, resulting in impaired consciousness. They may include autonomic and psychic features present in focal aware seizures.

Signs may include:[12]

  • Motionless staring
  • Automatic movements of the hands or mouth
  • Confusion and disorientation
  • Altered ability to respond to others, unusual speech
  • Transient aphasia (losing ability to speak, read, or comprehend spoken word)

These seizures tend to have a warning or aura before they occur, and when they occur they generally tend to last only 1–2 minutes. It is not uncommon for an individual to be tired or confused for up to 15 minutes after a seizure has occurred, although postictal confusion can last for hours or even days. Though they may not seem harmful, due to the fact that the individual does not normally seize, they can be extremely harmful if the individual is left alone around dangerous objects. For example, if a person with complex partial seizures is driving alone, this can cause them to run into the ditch, or worse, cause an accident involving multiple people. With this type, some people do not even realize they are having a seizure and most of the time their memory from right before or after the seizure is wiped. First-aid is only required if there has been an injury or if this is the first time a person has had a seizure.

This is Mel again, just to note that focal impaired awareness seizures must be the new term for complex-partial seizures, which is what I grew up being told I had. Back to Wikipedia:

Postictal period

There is some period of recovery in which neurological function is altered after each of these seizure types. This is the postictal state. The degree and length of postictal impairment directly correlates with the severity of the seizure type. Focal aware seizures often last less than sixty seconds; focal with impaired awareness seizures may last up to two minutes; and generalized tonic clonic seizures may last up to three minutes.[citation needed] The postictal state in seizures other than focal aware may last much longer than the seizure itself.

Because a major function of the temporal lobe is short-term memory, a focal with impaired awareness seizure, and a focal to bilateral seizure can cause amnesia for the period of the seizure, meaning that the seizure may not be remembered.[c

Hippocampus

The temporal lobe and particularly the hippocampus play an important role in memory processing. Declarative memory (memories which can be consciously recalled) is formed in the area of the hippocampus called the dentate gyrus.[citation needed]

Temporal lobe epilepsy is associated with memory disorders and loss of memory. Animal models and clinical studies show that memory loss correlates with temporal lobe neuronal loss in temporal lobe epilepsy. Verbal memory deficit correlates with pyramidal cell loss in TLE. This is more so on the left in verbal memory loss. Neuronal loss on the right is more prominent in non-verbal (visuospatial memory loss).[14][15][16][17][18]

Personality

The effect of temporal lobe epilepsy on personality is a historical observation dating to the 1800s. Personality and behavioural change in temporal lobe epilepsy is seen as a chronic condition when it persists for more than three months.[20]

Geschwind syndrome is a set of behavioural phenomena seen in some people with TLE. Documented by Norman Geschwind, signs include: hypergraphia (compulsion to write (or draw) excessively), hyperreligiosity (intense religious or philosophical experiences or interests), hyposexuality (reduced sexual interest or drive), circumstantiality (result of a non-linear thought pattern, talks at length about irrelevant and trivial details).[21] The personality changes generally vary by hemisphere.[21]

The existence of a “temporal lobe epileptic personality” and Geschwind syndrome has been disputed and research is inconclusive.[21]

Okay it is Mel again. Most of the things listed apply to me in one way or another. In fact, the more you do your research, the more you would think (if you know me well) that they had me followed. It is far more a part of me than anything else.

One thing Wikipedia left out, is the development of an intellectual disability later in life, caused by the temporal lobe epilepsy. From the signs, I seem to have done that. I have been told by doctors I have the cognitive status of an infant. And I have been told similar things, including that I will never grow up, by a neuropsychologist who seemed to want to get my parents to put me under adult guardianship. And I know I fit the official criteria.

Hypergraphia is more than compulsive writing. It is compulsive creativity of any kind. I definitely have that.

I’m definitely autistic. But like these other labels, I don’t like being confined to it.

Also, I grew up hearing the words “underlying developmental disability” a lot. I didn’t understand them and they scared me. I wanted to know what it meant but at the time had very little means to ask. They also said that it was severe, complex, unsalvageable, and many other things to that effect.

So basically, CP is the only one I definitely don’t have. But there are other less-known ones like childhood-onset brain injury and fetal alcohol syndrome. Also given that CP is involved, there are people with physical and learning disabilities that would have qualified back in the day. I still feel like my agrin mutation leading to congenital myasthenic syndrome is a developmental disability in and of itself.

But I am part of the DD self-advocacy movement. One of the most important parts of that movement, for me, is the rejection of specific labels. This does not mean we don’t understand we are different from each other. It is just a core part of the values of the movement to put the person first and our disability second. That doesn’t mean disregarding disabilities or important individual differences. It just means we go about it in a different way.

My favorite part of the self-advocacy movement is we seem to have gotten cooperation among very different kinds of people with disabilities. For instance, I went to a live-in rec program. It was hell on earth, but the saving grace was the cooperation. I was being pushed in a wheelchair. People who could walk but unsteadily were allowed to grab my chair. Meanwhile, people who could talk would get the attention of staff. If someone fell, which happened often, people who could walk would go for help.

I have never seen that kind of cooperation among any other group of people with disabilities. Or, as a multiply-disabled (including several DDs) friend said, the DD world was doing cross-disability great, long before cross-disability was a term. We are an accident of history. There is no particular reason for us all being lumped together, other than that historically we were put in institutions for the “feebleminded”. Sometimes also the “insane and feebleminded” or just the “insane”, but mostly they focused on feebleminded.

This post is a lead-in to several other posts. I had to do it this way. Just like I need the words “genderless lesbian” without being a TERF, I need the words to explain my relationship to the different kinds of developmental disabilities.

So this is my attempt to say: I seem to have temporal lobe epilepsy (with other kinds of seizures), an intellectual disability, autism, and some kind of unnamed DD. I also have been called low-functioning. But I don’t live my life as if labels matter. I just need these words, right here and right now, to explain things. At least one further post is planned. I don’t know when.

t

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The view out my window.

If you look close you can see the smokestack from my apartment building. And lots of trees.

This is why it is so easy to believe there’s no threat. If my roomie wasn’t certified in emergency management I don’t know what I’d do. Also she wants you to know her wishlist works now. We have $5 toour name. any and all help appreciated.

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Just got out of hospital

So i just got out of the hospital.  I had the flu.  Luckily only the flu.  But my body is hanging by a thread. A thread. Like they changed around my stomas and everything there is leaking.  I keep falling to the floor from the congenital myasthenia caused by my AGRN mutation.  i am still slighty delirious.  Usually I get passive delirium.  This is active delirium — the kind people pick up faster.  I stood on my bed.  I ripped my hair out.  I was convinced they were going to kill me.  And that they were easing me into death.

But I am learning.  Especilally learning the hard lessons about surrendering to not knowing what is going on.  That was a hard one for me.   At one poiint the nurse said I needed ADD meds.  And apparently the fastest way to get a “sitter” (someone who stays in your room at all times) is to “bedstand”.

I am freezing cold all the time from adrenial insufficiency. 

But I did a lot of facing my mortality in hospital.

Despite or because of thinking I was already dead and possibly in hell.  I don’t believe in heaven or hell.  But old training dies hard I guess.

Anyway I feel really good about all this.  And I have made a promise to my friends to go back to typing for good.  Speech makes my brain hurt.  And even my doctors worry when I speak. Usually a sign of delirium.  And as the delirium wears off, I do better with typing.  Speech is evil.  For me.

I would urge my friends who speak under stress to type anyway.  Emergency speech can still be frigging evil.

Oh and I’m trying to cuss less, despite the title of this blog. 

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We are all in this together.

If the Coronavirus does not teach people we are all in this together, we have problems. We are all in this together. We take care of our own. We know that our weakest people are valuable. We should.. I do not like the way this is going. But we ought to be aware of these things at all times and it should not take a massive catastrophe to do it.