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.

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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.

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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 Being human, joy, medical, music

Who am I when I can’t do…?

Mel wearing headphones with shadows falling over parts of hir face.
Mel wearing headphones with shadows falling over parts of hir face.

I hate being reduced to a pile of medical problems.

I don’t care what guise it comes under, either. I’m not your intriguing case. I’m not a two-dimensional prop in your medical detective story. Or your medical melodrama about brave people who buck the system and discover the truth. Or your very private psychodramas you want to act out with me as little more then a living doll.  And that includes “positive” versions of originally medical ideas — if you reduce me to any diagnosis, no matter how positive you think you’ve changed it into, you’re still reducing me down to something I’m not comfortable being reduced down to. It’s why I’m not comfortable with communities that’ve basically grown out of a single medical label, no matter how they believe they’ve transformed it.  At any rate, if you want to reduce me to medical crap, whether you think it’s good or bad — I’m not fucking interested. If you reduce me or my life to medical issues you’ll rapidly find yourself being ignored or tolerated at best.

But sometimes it seems like things close in, and all there is time and energy to think about is the next medical thing. And I start wondering, is this all there is to me? Is my life just one medical crisis to the next and holding myself together with strings and baling wire in the meantime? You don’t want to know the sanitary conditions I’m living in right now, the compromises I’ve been forced to make for survival. If you’re physically disabled you probably have some idea either from your own life or that of your friends. The shit we do to survive and live free at the same time. It’s criminal that we’re forced to live this way. I have an elderly family member I probably inherited my congenital myasthenia from, they describe crawling around the house when they can’t walk, and can’t get up off the floor, and you don’t want to know how they drive a car sometimes. They’ve coded before, I worry about it happening far from help next time.

Anyway, eventually the world closes in and all you can think about is medical shit. Explaining it to people over and over again. Doing medical shit you need to do to survive. And it feels like there’s nothing left, nothing left to you, everything’s gone.

It’s scary.

And it doesn’t help when that’s essentially how lots of people see you. As just a pile of flesh with a lot of medical problems. You start to go crazy. You start to wonder if there ever was anything more to who you are. Medical shit can fuck with your head in huge ways.

The medical way of seeing us is incomplete. It doesn’t include the things that make us people. Those core things that really matter. So if this shit gets into your head, you can’t see those things about yourself either.

The important parts of the world never go away. They are literally everywhere, embedded in everything. Including us. When we can’t feel them or perceive them, it’s always because something is blocking our view. Not because they’ve gone anywhere.

It’s easy to get caught up in the bullshit we are fed, too. Like that we aren’t real people, not the kind that matter, unless we can make a contribution that fits in with capitalism. Like something that pays money. And people with lots of medical shit that takes over our lives to this extent are seldom fully employed. So that can eat at us too, that knowledge that whatever we contribute to the world will never be good enough to count.

But we do contribute valuable things to the world. Just existing is its own contribution, but people contribute more than our existence. Each one of us is uniquely positioned to make very specific contributions to society, whether we are trying to or not, whether we are aware of it or not. Real contributions often go unnoticed even by the people making them.

And we get so caught up on what we do, that things get unpleasant when all we can do is whatever it takes medically to ensure our continued survival. Who am I when this is all I can do?

At first I fall back on connections to place, people, family, culture. I am a child of Redwood Terrace. I am an Okie and a Minnesota Swede. I am a Californian. The landscape of California, from the cliffs and ocean of the Monterey Bay to the bare yellow grass hills with oak trees, to the redwoods of San Mateo County and Santa Cruz County to the converted swamp / desert / farmland of the San Joaquin Valley to the paved-over orchards of Silicon Valley, these things are burned into my DNA almost, they go in so deep. The graves of my recent ancestors, in Shafter and Wasco cemeteries, places likely to become uninhabitable soon. My father’s grave in the Siskiyous. All the objects my father gave me that point like a giant beacon to who he was, who he is now that he’s merged with love and become something different.

These things are important. Connections are important. And no matter how difficult and dysfunctional our families get, family is always a part of you, a connection you can’t sever, part of who you are. I try to remember my grandfather’s violin, to remind me family is family and the worst things about it can still yield surprising moments of love and beauty.

I’m still the bleakest optimist I know. I can look into a pile of shit and find something worthwhile, but I still don’t shy away from it being a pile of shit. This confuses people. I continue to believe this skill will become vital to the survival of lots of people in the world today, though. Discounting the good or pretending the bad isn’t there will lead to disaster.

Anyway, family, culture, place, they all provide a firmer foundation than what you can do at any given moment. No matter how messed up that family, culture, or place is. But there’s something far more basic and far more important:

You are a small piece of the world. A very particular small piece of the world. You have a place, that’s specific to you and who you are. Everything from your best qualities to your worst faults are part of this. You are connected to everything and everyone else. Who you are and what you do, matters. You are always, always connected to the deepest parts of reality. They are a part of you, you are a part of them. You may not be able to feel that at any given time, but all that means is something’s obscuring your view. This is always there.

You are always so fucking much more than a set of categories, shitty circumstances, or ideas. And more than a set of medical problems or any other kind of problems. You are exactly no more and no less than a tiny expression of the deepest and most beautiful parts of the world.

And if we have anything we are meant to do, it’s to express that the most clearly with the least bullshit obscuring it as we can, which may be the most difficult thing in the world to do, but also the most important. But that’s not something we can or should be constantly freaking out about. Just something to keep in mind.

And sometimes the hardest times bring out the most depth of beauty in the world in weird and unexpected ways. Other times they’re just hard. But the world is a strange place. And you do have an exact and important place within it that nobody else can fill, no matter what anyone tells you, even yourself.This little piece of the world is who you are no matter what you can or can’t do. And this little piece of the world may be little but it’s also important.

I was writing this post, it’s taken me days. And I came across the perfect song to express part of what I’m talking about. I’m a huge Grace Vanderwaal fan for reasons. And she wrote this song that’s about those amazing parts of the world we can just forget are there entirely. And — those amazing parts of the world — we are a part of them, they are a part of us, and that’s who we really are, who we remain, regardless of what we can or can’t do at any given time.

So here’s the music video then the lyrics:

Sit right here, chillin’, level low
Close your eyes and just let it flow
Right next to me I hear your heart beat, beat
When the dial turns up and the music starts playing
We don’t realize in this society
Doesn’t matter how your hair looks or what they are thinking
Just, just what we are finding

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh (hey)
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

The whole crowd seems to like me now
‘Cause they think I’m cool but back when I was in school
They found it very easy to hate me
Funny how always these times are changing
Back then it was so easy to shatter
But now in the end it doesn’t really matter

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh (hey)
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

All of the talk, and the talk from ya
Won’t even matter when the lights come up
All of the talk, and the talk from ya, hey
Open your eyes and just wake up
Do all the things that will matter to ya
Open your eyes and just wake up, woah

Tap your foot and listen in
Ignore the world, let the music cave in
Close your phone and breathe in the air
You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this

You’ll soon realize that there’s something that is
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh
So much more than this
It is what it is
So much more than this
Oh, oh, oh, oh, oh, oh

Wow, that kid has more kitten wisdom packed into her than you normally see in a child.  She reminds me so much of Igor, right down to the ability to unfailingly be exactly who she is, even when she doesn’t appear to know.  (Kitten wisdom is what I call the kind of wisdom that often comes with youth rather than the kind that sometimes grows with age.  And Igor and Grace Vanderwaal have a ton of it.  And remind me of each other in ways I can’t articulate.  Also some of her dancing in that video is perfect.)  And I love that she writes songs about being a child her age rather than just singing artificially weird children’s songs written by adults, or just adult songs.  It’s weird, though, that this should be unusual enough to comment on.

Mel wearing headphones.
Mel wearing headphones again.

Anyway, that place that’s so much more than this is always right here.  And we are always so much more than this, so much more than we’re told we are, so much more than a role or a category or a collection of frigging problems and labels and crap.  Because we’re not separated from that place, ever, we just sometimes feel like we are.  But it’s always there, and we’re always part of it.  The stuff that makes us think we’re not, is all confusion and illusion of various sorts.

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A tree with moss and fungus in Redwood Terrace photographed by my best friend.
Posted in Death & Mortality Series

Life has the fragility of a leaf full of holes shaking

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

Shortly after I came home from the hospital, I stood outside next to a tree. I leaned on the tree because the short walk had wiped me out.

I felt my entire body at once. I was shaking. I felt like the thinnest and most fragile leaf, with holes in it. I started to feel transparent.

Light shone through the transparency that affected everything. With it, love, connection, change, truth, things that can never be named or described. Still aware of my entire body at once, the immense struggle it took to physically continue on any level. How close I was to death. Light through the leaves on the tree above me. Light through me invisibly, through everything.

I understand important things through the workings of the redwoods. Things without names, things without words. Redwood Terrace is holy ground embedded in my soul. Under my feet is earth, and roots, and many things unseen. And a connection to Redwood Terrace, outside time. And I am there, as well.

The fungal mycelium people never think about, under their feet all the time. Life, and death, and life, connected, changing, moving, things becoming parts of one another. An old, familiar, comforting promise: If you die this time, if you must step over that edge, we promise, we promise this is in store for you on every level, and if you want, we will eat you, we will change you, you will become life for so many, and on it goes, and this is love, this is our offering to the world.

If I knew I was dying and there were no consequences to these acts, I would put my last ounces of energy and effort into going to Redwood Terrace. I would find a hollow tree or the closest thing, curl up, and wait. The end might be painful, terrible, messy, but nothing is tidy about dying and none of us is guaranteed it will be easy. I would die in the place I have the most connection to. My last act to offer myself over to that place, body and soul. Everything from microbes to plants to animals to fungi would have a feast and I would turn into life, and things would be happening on levels that have no words and can’t be spoken of.

I will never do this. The person who found me. The pointless waste of resources looking for a crime that never happened. These are enough reasons, and there are more. But it’s what I’d want. I’ll settle for being composted and the results returned to the ground as close to the Mother Tree as possible. Nobody is guaranteed the life we want or the death we want. But that is the death I want.

But as I stand there I am aware of that promise, aware of the ancient threads under my feet tying death and life as essential parts of each other. Aware that should death happen there is beauty and love, not fear. How everything left of me can be absorbed into new life and timeless love. Aware how close I stand to the line, aware of the silent, patient presence of Death.

Death by now is an old friend. I’ve had too many close calls not to become acquainted. I once spent five weeks pretty much abandoned to live or die in a series of hospital rooms where for the most part I was unwanted. Doctors have said they’re surprised I pulled through without the ICU that time. I was alone for vast stretches of time, I was delirious and terrified. Death was there, though.

And I came to know Her as kind, caring, a friend. She was in no hurry. She can wait forever, She’ll find all of us one day. But when you sit close to her, sometimes you have choices nobody talks about. Where you could go with Her right away, or try and stay. And nobody would know. Trying to stay alive doesn’t guarantee life of course. I chose Death’s companionship, which doesn’t mean choosing to die. But every time, I chose to stay alive.

It’s odd that a vivid picture has formed in my mind of what Death would look like to me if she were human. She looks very much related to me, like an ancestor I’ve never met who strongly resembles many people on my father’s side of the family. Very old with long white hair. I guess she has some qualities in common with George McDonald’s multiple-greats-grandmother character in The Princess and the Goblin series. She’s very powerful, has the potential to be very kind and loving, and does not actually bear any ill will towards the living.

But She isn’t human and I imagine She looks different to everyone. I’ve never seen Her with my eyes, only had this vivid image of how She would look if human. But really my encounters with Death are more wordless and imageless and impossible to put down in writing, including that endless five weeks of Her. But I can feel when She’s hanging around me, and so can some of my friends. It always means something has slipped too close to completely guarantee survival.

Most people think of the survival instinct as something rooted somewhere in the brain. And there certainly is one there. But it goes deeper than that. All life from the first single-celled organism tries hard to live. Being alive is extremely difficult and takes work and energy. Without some drive for survival, nothing would bother. Every living thing has some version of this drive for survival.

And I am not just a brain, and my brain is not separate from my body, and my body is not just a carrying case for a brain. I’m made of all these cells, some working together, and all kinds of things. Each wanting individually and collectively to live. When I say I chose life, I don’t just mean my thoughts chose life. I didn’t always have enough thoughts to string that kind of choice together. My whole body chose life and fought hard for it and that’s why I’m still here. It seems arrogant to reduce myself to the little part of me that sits and reflects on things, then claim full credit. There’s nothing like delirium to show you the brain is just another body part. And when my mind wasn’t functioning right the rest of me still fought like hell to be here.

I’m well aware the things I’m saying could terrify people. But they are real for me. Death is welcome in my life. This is easily misunderstood, though. I don’t have a death wish. I used to. A grinding, unrelenting one that tormented me every second of the day and caused a big conflict with my survival drive, which I alternately thanked and cursed. That was a long time ago. Certainly long before I befriended Death.

Coming to know Death intimately has been one of the most life-affirming things I’ve ever experienced.

Posted in Death & Mortality Series

Death & Mortality Series.

Hello, and welcome to the first post in my Death & Mortality series.  You can read my Death and Mortality posts any time with the Death & Mortality Series category on this blog.  This post is essential to understanding the context of any post I make about my experiences and viewpoints around death and mortality, so if you’re able to read it please do.  It will explain what I do mean, what I don’t mean, and why I am planning to write so much about death at all.  And especially this post explains a particular way I do not ever want my posts about death taken or used.  So moving on…

Light shining through the canopy of a redwood forest in San Mateo County.
Canopy of Redwood Terrace with sun shining through.

I have meant for a long time to write a long series of posts about my relationship with death and my own mortality.  But the sensitive and complex nature of the topic has always stopped me.  It’s not the kind of topic where my views can be summed up in a single post.  At the same time, if I posted some of the things I believe and experience, I worry they could be used out of contexts to support viewpoints that have real-world deadly consequences for disabled people.  So I have hesitated to post about it except in certain selective contexts.  And I have let many important things go unsaid.

Because death is an important topic for everyone.  It’s the one thing that all people are guaranteed to experience.  And there are a lot of taboos about even discussing death.  So I want to discuss my relationship with death in detail.

But I also want to say up-front that I speak for nobody but myself and maybe any others who may feel the same as I do.  (It’s not uncommon, but goes largely unspoken.)  And that I never mean to imply that my experiences ought to be the same as another person’s experiences.  Your relationship with death is deeply personal.  Everyone has a different one.  That is not a bad thing.  Lots of people see death very differently than I do.  Lots of people experience their own mortality and that of others in a very different way than I do.  That diversity of experience is probably a good thing.  I in no way intend to say that everyone can or should view their own death or that of of others in the same way I do.

That said, I do have certain views about death that go beyond the personal.  For instance, my views on the way disabled people face ableist assumptions that kill us on a regular basis.  Those are not just my personal views about facing my own mortality.  Those are views that I do think are important on a wider scale than me and people like me, because those ableist ideas are out there killing people every single day.  They have almost killed me more than once.  And I draw a distinction between what’s essentially a political standpoint (my views on death and disability), which is intended to be taken broadly, and things that deal with my very personal, very subjective relationship to death and my own mortality.  Hopefully you can understand there’s a distinction here, even if the two have some overlap.

And it’s that tension between a very private and subjective personal experience, and a political view about ableism that is already killing people, that makes this such a difficult topic for me to discuss.  Because my relationship with death is extremely friendly in nature, my views of death are very positive.  But part of that deadly ableism out there is the idea that disabled people are better off “accepting” death, or just plain better off dead.  And I don’t want my personal acceptance of death to ever in a million years be used to justify the idea that disabled people should just accept our fates to die and not fight for our lives like anyone else would.  That’s not the kind of acceptance I talk about when I talk about my personal acceptance of death, and anyone using my personal acceptance of death to justify DNRs for all disabled or potentially disabled people or something is flagrantly misusing my words out of context to support things I would never support, and will be treated as such.  (And no, I will never have a DNR, that’s not what I mean when I say I accept death.)

But the real reasons I want to talk about death are more related to the unexpected personal experiences I have had along the way.  Far from feeling morbid, my relationship with death has long been extremely life-affirming.  And while it may sound like and dovetail well fo the most part with certain viewpoints out there that are becoming more popular or at least more openly spoken of, there are sometimes differences that are important.  And everyone’s various experiences of these things are important, and not things that should have to be hidden in the shadows to make a death-terrified society comfortable.  Nobody should have to talk about these things in public, but it should be something people can have a public discussion about.

Obviously the topic is also highly emotionally charged for just about everyone.  Most people have strong feelings about death whether they think about it regularly or not.  It’s something everyone encounters and has to grapple with, and everyone responds to in different ways based on everything from personality to culture to personal experiences in life.  Our own mortality shapes us, the loss of loved ones shapes us, and these things can make death an extremely difficult topic.  So does the fact that it’s in many cultures something you’re just not supposed to talk about.  And where there are often rigid views that people are expected to hold.  So I totally understand how emotional and difficult discussions of death can be for people in a huge variety of ways.

Also, my posts may get into specific religious and spiritual views, or things that sound like religious and spiritual views, that are personal to me.   All cultures and religions have extremely varied views on death, and many people are atheist, not religious, or have very specific personal views that don’t follow any particular religious view.  I respect all of those viewpoints and how they can differ both between and among themselves.  Please respect my own views, and that my holding and discussing those views does not mean I am trying to force anyone else to believe the same things I do.  These things are, again, very personal.

All of these things have made making even one of the posts I want to make, very difficult.  But I do want to make a series of posts dealing with death specifically.  And writing this, so you understand the context I’m doing it in, is the first step.  And the step that has kept me from writing any of the others.

I don’t know how fast I will write more posts, or how many I will write.  Whether I write one or dozens, be aware that each is only a small piece of a larger whole.  Some posts may even seem to contradict each other at first glance, especially if you’re unfamiliar with views similar to my own.  (People often expect one view to be clustered with a bunch of other views in a certain way, and my views on just about anything do not tend to follow those expectations very well.  It makes it hard to communicate sometimes.)  Like many people would be a little confused by I completely accept death and even welcome it as an important and beautiful part of life and I want to live as long as I possibly can even at costs other people would find unacceptable coming from the same person.  But those are viewpoints I hold and they don’t actually contradict each other.  And many people assume the only reason someone could possibly want “extraordinary measures” medically is an extreme fear of death — not true either.  So just… please try not to assume too much from a single post, or you’ll get confused.  If I could make one post that summed up everything, it would’ve happened already.

TL;DR:

  • I’m making a series of posts about death and mortality.  I don’t know how long it’s gonna be.  You can find it in my Death & Mortality Series category.
  • Some posts will deal with highly personal views.
  • Some posts will deal with more broad political and ethical views, especially around disability rights and deadly forms of ableism.  When it comes to these broader topics I am going to sometimes say when I think certain views and policies and systems actually harm and kill people.
  • Each of us deals with our own death and mortality differently for a huge number of reasons, and just because I deal with mine a certain way doesn’t mean I’m telling you that you have to deal with yours the same way.
  • I respect the many different cultural, religious, and spiritual perspectives that exist out there regarding death, please respect mine.  In stating mine I’m not trying to say yours are bad or that everyone should share mine.
  • Please understand each post is once piece of a complicated issue.
  • If this is too intense for you, feel free to skip it.
  • This is all extremely important to me.

 

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.

redwood terrace fungus 01
A tree with moss and fungus in Redwood Terrace photographed by my best friend.