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.

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Posted in Blogging about blogging, Days of the Week, Friday / vendredi / viernes / fredag / Frietag, Topic Themes

Friends and Family Friday

friends and family Friday
friends and family Friday.

Friends and Family Friday is one of the (many) planned themes to organize time and blogging and whatnot. This is a placeholder until I can write a better description. As usual, if I wait for it to be exactly right for publication, I’ll never write anything. So I’m trying a bunch of new things, including posting unfinished stuff like this.

Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy

Birthday card from another universe.

Close-up photograph of a small orange salamander in what looks to me like the forest floor of the California redwoods. Titled “Morning Walk,” by Sandy Gardner, 2008, card by Greentree Designs.

Whoever chose this card cared about me.

They cared enough to choose an extremely meaningful picture for me on the birthday card. They didn’t have to do that.

The bithday card was not this year, my 39th birthday.

With the dates written, it would have to be my 37th or 38th. If I’m doing the math right.

Things were already hitting the fan in a huge way at that point. I was being hurt by some of the same people who signed the card.

But back then, there were still enough people who cared about me as a human being and treating me like as a human being (or in some cases, at least, appearing to) that things were just… different.

Reading it was like reading a postcard from a universe I barely remember.

A universe that was already disappearing by the time the card came.

But there was a time, if I was hospitalized, Howard would take extra time to visit me in the hospital and help me get better and go home, and help me with the transition home, and give extra help to keep me out of the hospital, and extra help to make up for the fact that you never go home healthy and often need some extra support.

There was a time when they didn’t treat my second mom like she’s made of poison. To the point they won’t allow my caregivers in the same house as her for longer than 5 minutes, and have gone to great lengths to lie in order to avoid having to deal with her, because she complained about their medical neglect and they never forgave her.

But there was a time.

There was a time when some people tried to help me. Even case managers.

There was a time when things mostly worked.

There was a time when people’s efforts to help me were not thwarted by the office people at every turn.

There was a time when many people in the office were actually helping me.

Mind you.

The system was never good.

But it was never like this.

This card was signed by seven people.

They didn’t have to get me a card.

They were being nice. They were treating me like a human. Some of the time.

It’s different now.

It’s different now.

I don’t understand.

I don’t understand.

It’s different now. That’s all I know.

Posted in Being human

Maple Syrple

Roses are red, violets are purple
Sugar is sweet and so’s maple syrple

Roger Miller

That quote will never not be hilarious to me.

THIS MATTERS.

A pot of violets an da bottle of maple syrple.

Little things matter.

Little things people consider frivolous matter.

Sometimes they matter more than most things.

They’re part of the humanity that I get denied every day.

Just being allowed to care about shit like this.

Being allowed to have little things like this.

You only notice when people start trying to take it away.

Trying to make it sound like it’s not important to have things like this in your life.

Sometimes they do crap like decide this is all your life can be, and that’s all kinds of fucked up.

But other times they act like you can’t have this.

Like you can’t or shouldn’t care about things like this.

Especially when you’ve got lots of serious shit going on.

People act like you should be super-serious all the time.

And only care about certain things.

And care about whatever the hell they think you should care about.

And so you hold onto shit like this.

Which is why it pisses me off even when people say that people shouldn’t post their dinner on social media.

Maybe their dinner matters.

It’s actually little things ike this that make up everyone’s life.

Little bits of the world.

They matter.

Noticing them matters.

Living them matters.

Life without them, especially forced life without them, doesn’t work well.

People need things like this. Different people need different things. But everyone’s got things.

I’ve loved the maple syrple line my whole life. Not stopping now.

When people share things like this with each other it’s being social about little things we care about.

And people who like to do that like to do that, and that’s fine.

And people who like to keep it private, that’s also fine.

It’s just, there’s all kinds of ways to deny someone’s humanity.

And denying people these little weird bits of life, it doesn’t sound like much, but it does deny part of your humanity.

And it has a bigger impact than you’d think.

So think twice before you make fun of people for posting things like this, or pooh-pooh it to people, or say that people who like things like this are stupid or something. You don’t know who you might be hurting, or how deeply.

People don’t understand what gets taken away from you.

And I don’t know how to explain.

All I can say is:

MAPLE SYRPLE MATTERS. PERIOD.

Posted in Developmental disability, Developmental disability service system, HCBS, Self-advocacy

What my home means to me: I have so much to lose.

Nearly every night, I walk around my apartment in the dark. It’s easier to find my footing without the distraction of eyesight. I can feel my legs, my feet, the floor, the ground, the things that lie beneath. I touch the walls to better feel the building itself. Like all buildings, it has a personality. I find and touch the oldest parts of the building, wooden pillars in seemingly random places. They stretch from the bottom of the ground floor to the ceiling of the second floor.

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I explore my whole apartment in the dark, all the time. These days, sometimes I cry. People don’t understand what this place means to me. It’s more than any random home, which would mean a good deal already. I have so much more to lose than I used to know was possible.

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The dark allows an intimacy with the house that would be impossible in other circumstances. I can feel the way it wants to be all the things the best houses are. It wants to be a home, a real home. It wants people to live in it. It wants those people to be happy. It wants to protect them and make sure they’re safe. It wants them to be comfortable. It wants to be a haven, a place of refuge, a place of joy. And it genuinely loves the people who live in it.

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I’ve never lived in a house that was a home. Let alone one that wanted to be a home with every fiber of its being. I grew up in a house that wanted to start fights, to make violence worse, to scare and hurt and trap and imprison. It was such an unpleasant place that even from a young age I’d put myself through things I hated, like sleepovers, as long as they’d let me avoid the house. I never understood homesickness, only its opposite: dread that I’d be trapped there forever. I still have nightmares not about people or events but about being trapped alone in that house, unable to get away from it for the rest of my life. So I’m well aware that not all houses have the personality to be a true home, and how lucky I am to have found one.

I don’t normally watch horror, even cheesy horror. But I did watch every episode of Buffy. And only one truly got under my skin. It had a monster that lived in a hospital. You could only see it if you were crazy, delirious, or neurologically impaired. It sat on the ceiling above your bed and terrorized you while everyone else thought you were just hallucinating. Then it ate you.

Of all the things they showed on Buffy, that’s why I usually sleep with all the lights on. Embarrassing but true. When the lights go off, my brain starts imagining that damned ceiling monster.

The dark has always been a refuge from the pain, nausea, and chaos I associate with vision. It’s a place of calm and belonging. A place where things make sense and move slowly enough to understand. Where I can pick up all the shards of a world that comes through so fast it shatters inside my head. And just stare at the stained glass colors if that’s what happens. Or slowly put each piece back together in something like its original shape, so that something I saw earlier finally makes sense. The darkness itself feels alive, a warm and friendly presence: “Here in the shadows where everything blends, the darkness and me are the closest of friends.”

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This house makes it so I can be in the dark again, comfortably, and not be afraid of the ceiling monster.  The house protects me and makes me aware I am protected, even from my own fears.

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I’m not sure how often I’ve said this explicitly on this blog, but religion is central in my life and redwood forests are central to my religion. The connection I have with the particular forest I was born in, Redwood Terrace, is important to my ability to practice my religion. And while it’s true that this connection exists no matter where I go, it’s also true that it’s much easier to be immediately aware of that connection in some places than others. Like a lot of things in this realm, there’s no real way to explain it, things just work like that.

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Anyway, I find it easy to feel connected with Redwood Terrace from my apartment. Something is different about the ground around this building compared to other places around here. The apartment itself seems to help me connect with Redwood Terrace, as well as it seeming to have developed a friendship and connection with my best friend’s house, which has a similar personality.  All of these things mean I’m more able to practice my religion in this particular home than in any other home I’ve lived in. And that matters, even if I can’t explain to you how it works or why.

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I’ve got so much more to lose than I ever imagined was possible. It’s no longer just a matter of having my own place. I have my own place that I love and that loves me back. That puts things on a whole different level. I have an entire relationship with this place. It would be bad enough if they were trying to make me leave my home, any home I’ve ever had before. After all, there is never a valid reason to make anyone leave their home on the basis of disability. But now it’s not just my freedom I could lose. It’s an entire relationship with a place that matters more to me than I can explain.

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Nobody should ever have to explain or justify why they want to live in their own home. Nobody should ever be told that a perfectly normal desire to live at home is
in any way deviant, selfish, stubborn, denial, unrealistic, or unreasonable. And our society should no more accept this response to disability than we accept Victorian workhouses as a solution to poverty.

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But even if I shouldn’t have to explain, I do want to explain what my home means to me. Having my own place already means a lot more to me than I can express. And I’m not really able to write about that at the same time as writing about my specific home. But having a specific home I’m very attached to, means I have so much more to lose.

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You can’t just replace one home with another, any more than you can replace a human being with another. Even when you don’t mind moving, even when you choose to move, the new place is not the same as the old place. It should always be a choice.

It’s wrong for one person to have the power over another that it takes to tell them their disability means they have to leave their home. But it’s also wrong to use that power if you have it. And each person who uses this power over another human being, bears some of the responsibility for the damage done. And there’s always damage. Taken as a whole, the removal of disabled people from our homes is a large-scale crime against humanity.

Participating in such a thing isn’t trivial, no matter what your role.  Maybe you make the policy.  Maybe you enforce it.  Maybe you grudgingly go along with playing it out, but you play it out on us nonetheless.  Maybe you persuade us to give up ourhomes and move somewhere else.  So many things you could be doing, but it means you bear some responsibility for somethin terrible.  You can’t escape that.  I can’t sugar-coat it for you.

This is my home.

That’s all there is to it.

This is my home.  And anyone who participates in trying to take it away from me, is doing something terrible.

Because this is my home.  Living here is my right.  Having the assistance required to live here is my right.  Nobody gets to chaange that.  And anything that calls itself the Home and Community Based Services Waiver should never include services of a type that force or coerce anyone to move out of their own home.  They’re not home and community based if they force you to choose to leave your home and community for somewhere else, no matter where that somewhere else is located.  This is my home, you can’t just exchange it for another and pretend they’re the same.

Generations of self-advocates with developmental disabilities have fought for the right to live exactly where I am living now.  Lois Curtis fought for this.  Elaine Wilson fought for this.  They were two women with developmental and psychiatric disabilities, and don’t forget it.  They are what the Olmstead decision was all about.  Everyone has fought for this and I will not give it up lightly.  I will fight for it for me and for everyone who comes after me.  And it doesn’t matter if you don’t understand what it means to grow up thinking you’ll never live in your own home, but I did grow up that way and it nearly killed me.  I don’t want any child ever growing up again believing they’ll never have a chance at freedom and a home of their own if they have a disability. My apartment may not mean much to anyone else but it means the world to me and that’s the only thing that matters here.

This is my home.  You don’t get to tell me that’s not important, or that giving it up is inevitable or necessary.  I know better.  I know my rights.  THIS IS MY HOME.  And this is how much I have to lose.  And more.  I will fight to stay here with everything I have in me, and never stop fighting no matter what happens.  Because it’s not just my home at stake.  As long as any disabled person can be told their disability is too severe to live at home, none of us are truly free, because true freedom isn’t conditional.  THIS IS MY HOME.

Photo on 9-13-18 at 11.06 PM.jpg
You’ll pry my apartment keys out of my cold dead fingers.






I wrote this post using Unity on my Accent 800 communication device.  

This is a reminder that not everyone on the Internet speaks to communiate and some of us use picture symbols to write.

unitything.png
The screen of my Accent 800 communication device.  Above the words, I’ve pasted in the sequence of picture symbols it takes to get each word, so you can have some idea how it works.  You hit a set of symbols in sequence and it gives you the word you are looking for.

 

Posted in Developmental disability service system, HCBS

The apparent dignity in being a slob, and the terrifying catch-22 on the other end.

When you’re a slob, you don’t have to tell anyone that the reason you never did laundry in 9 months is because you didn’t know how despite being taught just as well as your brothers.

When you’re a slob, you don’t have to tell anyone that if you don’t change clothes for weeks or months on end it’s because dressing yourself has always ranged from difficult, slow, and exhausting to impossible depending on the circumstance.

When you’re a slob, nobody has to know that you actually don’t know how to shower, no matter how long you stay in there and go through the motions.

When you’re a slob, people think you’re gross but they don’t think you’re incompetent.  They think you’re the sort of person they don’t really want to smell, but you’re neither disabled, nor like some of the spoiled brats you went to school with who could’ve taken care of themselves but always had someone to do it for them so never learned.

When you’re a slob, people think you make bad choices but they don’t think you’re pathological.

When you’re a slob, people find you sort of relatable as a human being still.

When you’re a slob, and only a slob, they don’t tell you that you can’t live on your own and need your civil and human rights taken away for your own good.

There are other consequences to being a slob, mind you.  But sometimes it’s easier to be a slob in other people’s eyes — someone who’s made a choice, even if one they think is lazy and morally wrong — than to be a retard.  And I’m using that word advisedly, because that’s the word they’re thinking about you, not something sanitized and pretty.

And when you’re a slob, you can convince yourself you’re in control of all this, even if you’re not.

But seriously.  When you’re a slob, you get to be a human being.  Sometimes it’s just easier to say, “I’m a slob,” “I’m such a procrastinator,” “I don’t care about my appearance,” “I’m so gross,” whatever, keep it relatable, keep it human, but it’s a lie.

Because I don’t actually want to live in unsanitary living conditions.  I don’t want to laugh it all off over and over again.  I don’t want to watch my remaining functioning crumble out from under me because I’m physically and cognitively unable to keep my environment uncluttered enough to function.  These are not situations I have ever wanted.

But I’ve endured them.  Over and over again.  Allowing people to believe what they will.

For so many reasons.

So I could retain the dignity of being considered merely a flawed human being and not a walking pathology.

So people wouldn’t declare me too incompetent to live on my own.

So many reasons.

And then I’ve watched a friend with a developmental disability get told that the infected ulcers on her legs were the result of a “lifestyle choice” — both by Howard-Center-appointed testers who refused to acknowledge she was unable to bathe herself, and by VCIL who at the time catered to wheelchair users and she “only” used a cane — and I’ve wanted to spit nails.

Because that’s the fucking flipside, the catch-22 of being a slob.

Is they can just call you a slob when they want to deny you help you need.  Help that may be at the level of survival, like it was for my friend with her infected leg ulcers.  Like anyone would be so much of a slob that they’d get infections on their legs and go to the trouble to seek help to get services to get help bathing.  That’s not how it happens, people.

But all these things have a catch-22 angle to them.

Admit you need help and they’ll ‘help’ you right out of your right to live in your own home.

Insist on your right to live in your own home and they’ll hold you to impossibly high expectations and try to deny you help and call it a ‘lifestyle choice’ when you can’t do the things.

Be a slob and be denied help because slobs don’t need help they just need a kick in the pants for their laziness.

Admit you’re not a slob and if they believe you, you might be shunted into a nightmare world against your will.

There are no right ways to be developmentally disabled around here.

And I’m hearing horror stories.  About people suddenly being pushed to do things on their own they’ve never done before.  And if they manage it even once even for a little bit, they’re told they don’t need help, sent on their way, hours cut partially, or cut out of services altogether.

There are no right ways to be developmentally disabled around here.

We aren’t supposed to exist anymore.  We’ve become too inconvenient.  We’re the reason their agencies even exist, we’re the reason they have a paycheck, but we, ourselves, as people, as messy human beings who need their assistance to survive, are too inconvenient.  So they’re Xing us, one by one.  Or trying.  We need to resist Xing with everyting we’ve got.

For the time being, I'm still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can't frigging help it), and all. And I intend on remaining.
For the time being, I’m still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can’t frigging help it), and all. And I intend on remaining.

Posted in Being human, Nature, redwoods

This is the heart of everything I do and everything I am.

 

Elaborate crocheted wall hanging depicting the forest floor of Redwood Terrace.
Elaborate crocheted wall hanging depicting the forest floor of Redwood Terrace.

This is an excerpt from a book by Terry Pratchett. It’s called The Wee Free Men. It’s a children’s book set in the Discworld universe. Children’s books are where a lot of wisdom about the world is hidden. If it’s the right kind a children’s book.

“Oh, they’re around…somewhere,” said the Queen airily. “It’s all dreams, anyway. And dreams within dreams. You can’t rely on anything, little girl. Nothing is real. Nothing lasts. Everything goes. All you can do is learn to dream. And it’s too late for that. And I…I have had longer to learn.”

Tiffany wasn’t sure which of her thoughts was operating now. She was tired. She felt as though she was watching herself from above and a little behind. She saw herself set her boots firmly on the turf, and then…

…and then…

…and then, like someone rising from the clouds of a sleep, she felt the deep, deep Time below her. She sensed the breath of the downs and the distant roar of ancient, ancient seas trapped in millions of tiny shells. She thought of Granny Aching, under the turf, becoming part of the chalk again, part of the land under wave. She felt as if huge wheels, of time and stars, were turning slowly around her.

She opened her eyes and then, somewhere inside, opened her eyes again.

She heard the grass growing, and the sound of worms below the turf. She could feel the thousands of little lives around her, smell all the scents on the breeze, and see all the shades of the night.

The wheels of stars and years, of space and time, locked into place. She knew exactly where she was, and who she was, and what she was.

She swung a hand. The Queen tried to stop her, but she might as well have tried to stop a wheel of years. Tiffany’s hand caught her face and knocked her off her feet.

“Now I know why I never cried for Granny,” she said. “She has never left me.”

She leaned down, and centuries bent with her.

“The secret is not to dream,” she whispered. “The secret is to wake up. Waking up is harder. I have woken up and I am real. I know where I come from and I know where I’m going. You cannot fool me anymore. Or touch me. Or anything that is mine.”

I’ll never be like this again, she thought, as she saw the terror in the Queen’s face. I’ll never again feel as tall as the sky and as old as the hills and as strong as the sea. I’ve been given something for a while, and the price of it is that I have to give it back.

And the reward is giving it back, too. No human could live like this. You could spend a day looking at a flower to see how wonderful it is, and that wouldn’t get the milking done. No wonder we dream our way through our lives. To be awake, and see it all as it really is…no one could stand that for long.

Tiffany draws her strength and everything she is, from the land she was born on. In her case this is The Chalk, the Discworld equivalent of the Chiltern Hills chalk country that Terry Pratchett himself was from.

I also draw my strength and everything I am from the land I was born on. It’s a place called Redwood Terrace. It’s very small, and even people who live nearby have rarely heard of it.  But it means everything to me, and to the few other people I’ve heard of who were born there.

Everything described in the passage is something I have experienced with Redwood Terrace. That is why the place is sacred to me. That is why no matter where I go, I have roots that go down right into that soil. And I may live in Vermont, but a part of me is always in Redwood Terrace.  It doesn’t go away with distance.

Jar of dirt from Redwood Terrace.
Jar of dirt from Redwood Terrace.

The photograph at the beginning of this post is actually a wall hanging I made. I designed it, and I crocheted it. It is my tribute and reminder of the soil the forest floor in Redwood Terrace. I also keep a jar of that because my connection to that dirt and everything under and inside of it it is that important.  I’ve heard of someone else from Redwood Terrace who does the same.

I won’t say a lot more. Because there’s a point where you’re trying to talk about something that doesn’t really have words. And if you put too many words on it you just confuse people including yourself. But Terry Pratchett did an incredible job of writing around an experience that I have had with Redwood Terrace. And that other people I know who have that kind of strong ties to a particular place, they’ve experienced similar things as well.  The book may be children’s fantasy, but the description is something more real than you’ll get in a lot of nonfiction.  You find that in a lot of children’s books if you know where to look.

So this is really the heart of my existence. It’s not something I always talk about. But it is always there.

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A tree with moss and fungus in Redwood Terrace photographed by my best friend.

Posted in Being human, crochet

My friend can feel her feet.

My friend can feel her feet, and really that’s all that matters.

She spent forty years pretending to be a man.  She has finally come out as a woman and begun transitioning to living in the world as a woman.  Nearly everyone who knows her has reacted similarly — “Oh that makes sense, why didn’t I ever think of that?”

But then there’s the other reactions.

My friend can feel her feet for the first time in her life.  She can feel her body.  She was so disconnected from her body before that she didn’t notice a surgical scar she’d had on her arm in plain sight her entire life.  And now she can feel her feet.

Whenever I automatically feel my feet, it means I’m connected with the world, it means something is going right, I am doing the right thing.  I feel my feet every time I play my grandfather’s violin.

So when she told me she could feel her feet, I knew she was doing the right thing.

Her eyes have changed too.  I didn’t used to really know she had eyes.  Now they are impossible to miss, with tons of emotional depth, range, and complexity.  Strangers compliment her on them.

But some people react to her in a way that makes me uncomfortable.

She’s just trying to live her life, feel her feet, do what she needs to do.

Other people seem bound and determined to explain their theories of gender to her.

They seem to think that her announcing she exists is an invitation to a debate.  (It’s not.  And neither is this post.  If you want to debate gender, do it somewhere else, I will not approve your comments, I will not have a post about respecting my friend turn into a place to disrespect her.)

This is incredibly disrespectful.  She is a human being trying to live her life.  She is trying to live a life where she can feel her feet, have beautiful expressive eyes nobody’s seen before, be happy in her own skin.

Her existence is not an invitation to a debate.

Her existence isn’t the start of a philosophical discussion about whatever you happen to think gender is and how you think it works.

Her existence is not an invitation to explain to her exactly why you think she is how she is.  And what you think is really going on with her.

It doesn’t frigging matter if you understand what’s going on with her or not.

It really doesn’t.

I don’t understand gender.  I understand less about gender than the average human being does.  Because I’m genderless.  Gender identity is a foreign concept to me.  I don’t appear to have one, whatever it is.

But not all the world works like I do.  And not all the world should have to.  And I don’t feel insecure enough about my ignorance that I have to cook up an explanation for everything I don’t understand, and throw it in the face of everybody who experiences something I don’t.

Sometimes you’re not gonna understand.

Sometimes you’re not gonna know why something is so important to someone.

But none of that matters, actually.

I don’t have to understand gender identity to understand that it’s incredibly important to the vast majority of people on the planet.  Including my friend.

I don’t have to know why it’s important.

All I have to know is that when my friend lives her life as a woman, she can feel her feet.  She can feel as if her body is finally a part of her.  She can feel happy and fulfilled and just go about her life without thinking about trying to look male all the time.  She can show the world how deep and expressive her eyes are when she’s not living in hiding and fear.

Those are the only things that are important.

My opinions on gender — if I even have them — mean fuck-all in the scheme of her life.

The ways my experience of gender differ from hers — not important in terms of how she is leading  her life.

I don’t need to insert myself right into the big middle of everything related to her.  In fact the best thing I can possibly do is get out of the way and let her be herself.

If she wants to talk about gender she’ll bring it up.

Her existence is not an invitation to that conversation any more than my existence with a feeding tube is an invitation to a debate on assisted suicide.

Just have some respect.

For my part, I found out that she’s never worn shawls before.  She wanted to try colorful clothing.  She wanted the option to wear things that were feminine.  She’s never had these options before.  (And no, not everything she does and wears is stereotypically feminine.  She just hasn’t had the chance before.)  She loves to wrap herself in blankets, so I told her a shawl is like a socially acceptable usually-triangular blanket you can take anywhere.

So I’m crocheting her shawls.

Every stitch says “I already know you are a woman.”  Just in case she needs a reminder with all the other messages she’s getting.

I’ve made her two so far.  One is purple mohair lace.  The other is a sturdy wool in many bright colors that seem to suit her.  Because that’s the other thing.  Her soul used to be grey and in hiding and kind of reserved.  Ever since she came out, her soul has been all the bright colors you could imagine.  I’m not the only one who has remarked on these changes.

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The first shawl I crocheted my friend, a lacy purple mohair shawl.

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Closeup of the lacy purple mohair crocheted shawl with a lighter purple border.

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Mel holding up the full length of a thick wool shawl in bright striped colors of purple, pink, blue, and green.

woolshawl04
Mel modeling the back of the thick wool crocheted shawl in many colors.

woolshawl02
Showing the simple but elegant stitch pattern of the crocheted thick wool shawl in many colors.

You don’t need to make someone shawls to show your respect for her womanhood though.

And you don’t need to understand anything about gender.

All you have to understand is that living as a woman she can feel her feet and everything else.

It really comes down to that.

Not you.  Not your opinions.  Not your ideas about gender politics.  Get out of her way.  This is about her, not you.

Just her.

Living her life.

Which is not an invitation to a debate.

She is who she is.  Grant her the courtesy of treating her like it.

That’s all you need to do, all you need to know.

My friend can feel her feet.

My friend can express great depth of emotion in her eyes for the first time in her life.

Her soul shines in all these beautiful colors that were hidden before.

But look:

My.  Friend.  Can.  Feel.  Her.  Feet.

End of story.  Nothing else matters.