Posted in Being human, family

“Bet your ass we’re paranoid!”

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Oryx Cohen recently tweeted this photo of psych survivor/ex-patient activists with a protest sign saying “BET YOUR ASS WE’RE PARANOID.”

I grew up on stories of a great-grandma who slept with a hatchet under her pillow.

She was afraid the sheriff was coming for her, you see.  This was supposed to confirm she was crazy.

Maybe she was crazy.  I don’t know.  But the thing is, the sheriff did come for her.

And he took her to the state mental institution.

And she eventually died there.

So if she was “paranoid”, if she was sleeping with a hatchet under her pillow, maybe she had reason to be.

Society treats institutionalization as the inevitable result of disability.  It’s not.  It’s a widespread, ongoing crime against humanity.  Just because it’s socially acceptable doesn’t make any less of one.

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Posted in music

My lifelong nightmare in music.

At some point, my grandfather was involved in a Mason Williams benefit concert to save the Willamette River from damming.  This portion of the Willamette ran right through where my grandpa lived, and my grandpa was very musical, so it makes sense he would’ve been involved.  The upshot being that we had a bazillion records of Of Time And Rivers Flowing (a product from the benefit) kicking around our house, and listened to them a lot.

Anyway, the following song was probably the worst nightmare I could think of.  I was fascinated by it and horrified by it and felt every part of it as if it was happening to me every time I heard it.  Living without water is a terrible thing.  Think about that when you hear of water shortages, water crises, people with no access to water, people sabotaging the water supplies of would-be immigrants, take this song to heart.  I did, I always have, I always will, even when I was a little fuzzy on who Dan was (a pack mule, although I’ve heard some people say he could be a horse as well, but definitely originally a mule).

Lyrics:

All day I’ve faced a barren waste
Without the taste of water
Cool water
Dan and I with throats burnt dry
And souls that cry for water
Cool clear water

Keep a-movin’ Dan
Don’t you listen to him Dan
He’s the devil not a man
And he spreads the burnin’ sands with water
Dan can’t you see that big green tree
Where the water’s runnin’ free
And it’s waiting there for you and me?

The nights are cool and I’m a fool
Each star’s a pool of water
Cool water
With the dawn I’ll wake and yawn
And carry on to water
Cool clear water

Keep a-movin’ Dan
Don’t you listen to him Dan
He’s the devil not a man
And he spreads the burnin’ sands with water
Dan can’t you see that big green tree
Where the water’s runnin’ free
And it’s waiting there for you and me?

Dan’s feet are sore
He’s yearnin’ for
Just one thing more than water
Cool water
Like me I guess he’d like to rest
Where there’s no quest for water
Cool clear water

Keep a-movin’ Dan
Don’t you listen to him Dan
He’s the devil not a man
And he spreads the burnin’ sands with water
Dan can’t you see that big green tree
Where the water’s runnin’ free
And it’s waiting there for you and me?

Cool clear water

A mirage on the Mojave Desert, looking like water in the distance.
If you’ve never seen one, this is what a mirage can look like. That line about the devil spreading the sands with water is not really a metaphor. It actualy looks like water. Mirages are another thing that scared the crap out of me as a kid.  Water that isn’t water…

Also, always respect your environment if you’re headed somewhere like a desert because you just want to see its beauty or whatever other reason.  If you’re going somewhere without easy access to fresh drinking water, understand what that means.  Respect that you could die even if you know what you’re doing.  That should go without saying, but so many people enter harsh physical environments unprepared and don’t understand what that means.  If you don’t go in thinking you could die even if you’re prepared, you’re a fool many times over.  “Nature” won’t automatically provide and save you, “nature” may chew you up and spit you out dead.  Always respect the power of where you are, always respect your smallness in the world, always respect your fragility against the elements, always respect that if you get into trouble in such an environment other people may die trying to save you or locate your body (and still may not succeed).  Understand your responsibilities, understand danger, have some frigging respect, don’t undertake such things lightly.

More about the concert and the album:

“Of Time and Rivers Flowing” was a concert I put together during the summer of 1982. The concept was to present, in chronological order, songs about rivers and water that have been popular throughout history. The intention was to show our long-standing relationship with rivers –that they run not only through the land, but through our hearts and minds as well.

The idea of an entire program based upon rivers and water came about in this manner. In May of 1982, the Springfield Utility Board announced plans to put five hydroelectric dams on the North Fork of the Middle Fork of the Willamette River, one of the most beautiful, wild, free-flowing streams left in the country, and also my favorite trout stream.

I went with several other citizens from Oakridge to a public forum held in the high school auditorium to discuss the matter. Everyone was adamantly against the idea of the dams. Feelings ran high.

However, one group at the meeting, the McKenzie Flyfishers, a small club of flyfishing enthusiasts from Eugene, Oregon, was organized with facts and figures about the negative effects this project would have on the river should it come to pass.

After the meeting, in spite of the fact that all felt they had done their best to speak on the river’s behalf, for me the idea persisted that if only somehow the river itself could have been at the meeting to speak for and defend itself at its own “trial,” so to speak, it would have made the most eloquent statement of all.

Music and water have much in common; rivers are like music and music is like a river. They speak well of one another. Both flow through time, purifying themselves as they go, nourishing life along the way.

Then it dawned on me that the river could have a voice, in the form of the songs and music it has inspired over the years. Music could bring the river to the meeting! I began searching for songs about rivers and water and managed to collect more than 400.

One of the people I met through the McKenzie Flyfishers was Jim Williams. An avid flyfisherman,he not only lives right on the McKenzie with a drift boat ramp in his backyard, he is a past president of the McKenzie Flyfishers and of Oregon Trout as well. He and his wife, Bonnie, became and continue to be my greatest allies and supporters.

In March of 1983, the McKenzie Flyfishers and I joined forces to present three benefit performances at the Hult Center for the Performing Arts. We sold out all three shows and the Flyfishers used the money earned to successfully lobby a bill through the Oregon State Legislature. On July 6, 1983, the governor signed a bill formally adding the North Fork and its headwaters, Waldo Lake (the purest lake in the world!), to Oregon’s system of protected State Scenic Waterways.

Only two percent of the rivers in America are still wild, free-flowing streams. Federal laws set up to encourage energy development have not adequately addressed the numerous other benefits rivers can and do provide. In the ever-increasingly industrialized world in which we live, the natural river becomes a rare gem impossible to value, possessing an intrinsic reality unrelated to economic profit.

Today the “Of Time & Rivers Flowing” concert has continued to evolve in content. A reflection of “the river” metaphorically through time, it is a chronological river of musical history spanning almost 400 years.

The songs tell the story of our long relationship with rivers. Rivers have been the routes of exploration, the boundaries of territories, the highways of commerce, and they have sustained us with water, food, recreation, beauty and inspiration. We sing of it, and in doing so, reflect ourselves. Some of the more recent songs, unfortunately, speak of the degradation the rivers have experienced in modern times.

The concert serves to draw attention to the universal experience that is the river. Of Time & Rivers Flowing makes the audience aware of the potential of our collective personality. By giving the river a voice – a chance to speak to us through the music it has inspired – it can remind us of what we mean to each other.

– Mason Williams
May, 1996

I grew up going to Oakridge (loads of family lived there) all the time, I (sort of) learned to skip rocks in its streams, and went swimming in Waldo Lake and all these places they talk about, so I know this river and the water and terrain around it intimately.  Water mismanagement is rampant in the American West and even the parts that have not been hit hard yet will feel the effects before long.  My father, like many Okies of his generation, is from the two counties at the epicenter of the California water crisis — this is personal as well as everything else it is.  But Tulare and Kern counties are only the beginning for California and elsewhere.  If you don’t pay attention, you won’t know what hit you.  Listen to the song and think about what it means to be without water.  Whenever you hear of water shortages, of people being made to live without water or safe water, of water and waterways and water sources being taken away or polluted or misused, anything, understand what no water means.  Really understand it.

Posted in Being human, Californication, culture, family, history, medical

Every part of your life makes your perspective vital to the world.

We all come to the world from a particular place. Each of us it’s a little different. Sometimes a lot different. Some of it is culture. Some of it is background and life experiences. Some of it is our families. Some of it is the way our body works. Some of it is location. There are so many things that influence our perspective on the world.

But we all have one particular perspective. And that perspective is important. Without many perspectives on the world, the world would be in a lot of trouble. We need people from different backgrounds, different thought patterns, lots of different things.

But every part of your perspective, everything that makes it up, is important. And that includes the things that seem to contradict each other. And all the things you’re ashamed of. Or afraid of. Or all the little details that seem to make things a little more complicated. Those things are all important to who you are, where you come from in the world, and what makes your perspective important.

I’ve talked before about being an Okie. I may have even talked about how ashamed I was and afraid I was for a long time of recognizing I was an Okie. There were a lot of reasons for this. But I could not understand myself, or my culture, or the things that made me different from my neighbors where I grew up.  Not without understanding both that I was an Okie and what an Okie is. And the history behind Okies in California.

Mel wearing an orange t-shirt that says "California Okie" with a picture of a redwood tree and a map of Oklahoma.
Mel wearing an orange t-shirt that says “California Okie” with a picture of a redwood tree and a map of Oklahoma.

But it goes beyond just being an Okie. There are tons of specifics to it. There is how long most of my family was in Oklahoma and the surrounding area before coming to California. There is why each specific part of my family came to California. There is when they came to California. There is what opportunities were open to them and not open to them compared to other Okies. There is what states they came from both originally and before they came to California. There is who stayed behind, who came to California, and who went back. And why. There is the specific ethnicities of different parts of my family.

There is also the fact that we left that San Joaquin Valley and ended up in Silicon Valley. There is the fact that my father was a very specific kind of person who existed in Silicon Valley, even though their presence was rarely acknowledged. Which is he was an Okie techie. There were Okies who left what were usually farm jobs and made it into some part of the Silicon Valley tech industry.

In my father’s case, that meant he was an electronics technician. He, like many Okie techies, came from a small farming or farm working background. He grew up tinkering with electronics in the attic of his farm. His high school in Kern County had an excellent program. Every year, they built a house. The carpentry class would build it. And the electronics class, which my father was in, would wire it. And so on. They would sell it as cheap as they could to a family who needed a home, and use the money for next year’s house. My father got practical experience with electronics while still in high school.

He went to a two-year college and got a degree that allowed him to be an electronics technician. But like many Okie techies, most of what he learned in the world came from practical experience of some kind.  His on-the-job experience gave him enough knowledge that he could do the work of an engineer without the schooling.  He even trained engineering grad students.

This all meant that I was born in San Mateo County in the redwoods. Because this was very close to the physics research facility where my dad had a job when I was born. And it meant when we left the redwoods I grew up in Silicon Valley, mostly San Jose. I have also lived in the San Joaquin Valley, Santa Cruz County, Santa Barbara County, and other places. But that’s the basic area I was in.

And that means that while my culture was Okie, this was not the culture I was surrounded by. And I was exposed to a lot of things that most Okies would not believe in. Like all the stuff I call California dreaming. A large, destructive part of California’s culture where a lot of people try to live in a dream world. It’s most famous I guess as a Hollywood thing. Because it’s easy to see that Hollywood is based on a lot of people’s dreams about the world. But it’s around a lot of mainstream Californian culture. There’s a whole branch of the Silicon Valley tech industry where people  live with their head in the clouds and don’t seem to have any idea that there is a basic physical world they have to live in. There are also the new agers who think you can wish physical reality into existence using only your mind.

And so I was exposed to all these ideas, even though within my family they got very short shrift. Because like anyone who’s done farm work pretty much knows that you depend on the physical world and you cannot wish it away. And any Okie with any sense remembers the dustbowl and how you could not wish or dream that mess away, and how people created that mess by ignoring the realities of their physical environment. So my cultural influences push me very far away from the sort of thinking that gives us dream worlds, and thinking the Singularity will save us or kill us or whatever, and things like The Secret and the Law Of Attraction. Which are a lot more connected within Californian culture than you would expect.

But exposure to those ideas while young led me to try them out. And I tried them out in a pretty spectacular way. And I never could shake a pretty iron sense of the real physical world, even though I did my best to pretend. And part of that is my cultural background kicking in. But I heard if you pretend something it’ll happen, so I tried my best to pretend reality didn’t exist. But I couldn’t pretend to myself at all. So these were these two influences fighting in my head. What I heard around me and what I kinda knew in my bones.

My exposure to those conflicting cultural values shapes my understanding of the world. If I had only been exposed to one or the other, or if I had come from a different direction, my perspective would be extremely different. And I do think my perspective on this gives me insight into things that are important.

There’s also the specifics of my family, like my personal specific family history. Three of my grandparents were Okies, the other was the daughter of Swedish immigrants. My mom’s family tended to be FDR Democrats, my father’s family were Republicans. Both of my parents had political and religious disagreements with their parents. There were frictions in the family over politics and religion. There is the combination of political liberalism or leftism and a sort of cultural conservatism or traditionalism that’s pretty hard to nail down in words, but that definitely exists in my family and in me. There’s a lot more diversity among Okies in this regard than you will ever hear. And these things factor into everything as well.

But all that, all those influences, all those oddly specific things about my personal, family, and cultural background. Those all and far more things that I could not get into, contribute to what my particular perspective is and what I have to offer based on that perspective. Even my weird little personal aversions to being an Okie, my attempts to hide from being an Okie, my attempts to become something I’m not, my final understanding that regardless of anything I am an Okie. All those things, all those twists and turns, are important to who I am.

It is all of these extremely specific things that are specific to each person that are very important in so many ways. And culture is just one part of what I am describing.

Like you can go into anything. And all the specifics matter.

Another example:  I have a severe kind of inertia. So severe that in the medical world it’s been diagnosed as a form of catatonia since I was a teenager. First just as a description and later as an actual diagnosis. Severe enough that sometimes I need help with physical movement through physical prompting. But also not always that severe, fluctuating a lot throughout my lifetime. And fluctuating a lot based on a lot of things. And something that started out not as severe and became more severe over time.

That means that I intuitively understand a lot of the mechanics of how prompting works and does not work. I intuitively understand the vulnerabilities created by inertia.  These vulnerabilities are not well-understood by most professionals or family. I understand how things can go right, and how things can go wrong. This is true of many of us who have this kind of inertia.

Some people have never consistently done a voluntary unprompted movement.  Unlike them, I have had a degree of privacy to develop certain abilities. When I was a certain age, I was able to go on the computer, in a room by myself, and dial in to BBSs.

A BBS, or Bulletin Board System, was a computer system or network that you dialed into using a modem. At its simplest, it would have message boards where people can leave messages for each other. Kind of like if you’ve ever used a web board for some topic or another. It could also have email, whether within the BBS or with an Internet feed. Sometimes it would have Usenet which was again kind of like a web board in its way. Sometimes it would have what we now call chat rooms. Sometimes it would just have the ability to chat with the sysop, or systems operator, who is the owner of the BBS. Sometimes it would even have Internet relay chat. But not all BBSs connected to the Internet. Many were one computer.  Some had their own small networks like NirvanaNet. Which I used a lot.

But my time on BBSs was a time when I could type anything into a computer screen, and watch whatever reaction I got back. At that age, anything I said or typed had a lot of echo to it. So it was not necessarily reflective of what I was thinking. Sometimes it was. But that was not consistent for me. It was formative to privately and anonymously type words into a screen and get words back. Even if the fruits of that experience were in no way immediately obvious.  My communication skills would never have been the same without that.

And there are people who have a lot of inertia. Who have the same awareness I have of how it works and does not work. But who because of either their life circumstances, or their degree and type of inertia, have never had that formative experience of typing with nobody seeing what you’re typing. Or speaking without anyone hearing what you are speaking. And as minor as that might sound to someone who doesn’t know what that means, it fundamentally and hugely affects many things about how you communicate and even what you can communicate.

It also affects what you can safely communicate about. Because if you are dependent completely on other people for your communication, there are things that have consequences if you say them. And some of those consequences may be having your communication taken away forever.

But even aside from the risks, the lack of the experience of ever having communication privacy has an enormous effect on a huge amount of things. For me, having the ability to at least some of the time, and for me it’s most of the time, communicate or even just use words in private means there’s a lot of things I am able to say. Including a lot of things about the mechanics of inertia. And the mechanics of prompting. And the inherent dangers of prompting that cannot ever be erased.

And talking about those dangers is hard for people who depend on physical prompting to communicate. Some people do it, some people try. But they can’t always manage it. And when they do manage it, they may face very severe consequences.

So there are these dangers built deeply into any way of helping someone overcome inertia. And I can’t get into all of what they are right now. I’m not always actually that good at describing the exact nature of them. But I am able to say they are there. I am able to say that they can’t go away.

I am able to say that they are different from, vastly different from, the dangers that most people are aware of. I am able to say they operate in ways that have absolutely nothing to do with the fucking ideomotor effect. That human beings are not Ouija boards. That the fact that this takes place does not mean communication does not take place. But also the people who create, develop, and promote the many different forms of assisted typing do not understand this either. I don’t think some of them want to understand it. But others they just can’t understand if they’re not aware of what the actual problems are. And of course because of the stakes, there’s a lot of pressure to not even acknowledge there is a problem. Or to oversimplify the problem.

And the problem is someone like me is in a position to know and understand the dangers very well, and to be able to say hey there are dangers here. And that is so specific to my position in the world. Like my exact experiences with inertia. My exact experiences with prompting and assisted typing. My exact fluctuations in abilities. My exact background in this entire area, my entire personal history, the ability I had to experiment with language in private for years without anyone knowing who I was and what I was saying and why I was saying it.

And I’m also in a position to understand that even saying there are dangers carries dangers for those who rely on assisted typing of one kind or another. I know that anything I say can be used as ammunition to try and shut down attempts to allow people to communicate. And I take that very seriously, so if that’s your position on this is that all assisted typing is nonsense, I can tell you that is wrong. And I know exactly why it is wrong. Because I have used it.

So I exist in this borderland that is an extremely useful borderland to exist in. And all the twists and turns, all the little details, give me a perspective that is important to the world. I know other people with this particular perspective. Just as I know other people of my basic cultural and family background, both general and weirdly specific.

I’m not saying that I’m uniquely important in my perspective. We all have, each one of us, because of all the specifics of everything about us, an important perspective. We need every perspective we have. Even, or maybe especially, where our perspectives contradict each other or disagree. It doesn’t mean every single one of us is right. But every single one of us has something important to give to the world in terms of how we see the world and how we react to it. And when we try to hard to force everyone into the same perspective, we lose that.

Even weird things matter. Like being seen as high IQ and being seen as low IQ, both officially. Having gone from an early entry college to special education high school in that order. All of these things create understandings of the world that each of us has. Each of us has weird little specifics in our life that all matter.

Often it’s the things we don’t want to know about ourselves, or don’t want to think about, that are important. It’s the things we’re ashamed of. It’s the things people give us crap for. It’s the things we’re afraid of. It’s the things that aren’t even true, but other people’s belief in them has changed our lives.

Painful as some of these things are to think about, the more we understand them, the more we accept that all these things are a part of us, the better equipped we are to understand where we’re coming from. The more you understand the perspective you’re coming from, the more you can contribute from that perspective. It lets you know your exact place in the world and that is a very powerful thing to know. It gives you choices. It gives you understanding. It gives you insights that you would not otherwise have. It gives you more of an in-depth comprehension of both the strengths and limitations of your particular point of view.  It makes you understand your place within human diversity, and the importance of that diversity in all its forms.  It makes you understand why and how it is that diversity can never be neatly summed up.  It lets you know how you can use all of this.

So I’ve used a lot of examples of my own life here. But that’s to illustrate something that applies to every single person on this planet. Our culture matters. Our background matters. Our family matters. Our life experiences matter. Our physical body’s makeup matters. Everything about us contributes to this. And the less we can hide from the parts of ourselves that we don’t want to see, and the things about this that are so painful we don’t want to look at them, the more powerful we can be. And the more powerful our perspectives and our use of those perspectives can be.

So I guess the short version of this is:  Know thyself. But know thyself in detail. Know thyself fearlessly or at least courageously. Know all parts of thyself. Know the parts of thyself you would rather not know. Know the parts of thyself that you are proud of, that you’re ashamed of, that you’re indifferent to, that you are afraid of, all of them. Know how they all fit together. Know the parts of thyself that seem like contradictions and like they throw everything else about you into question. If something scares or repulses you, look twice, and look harder, and overcome the fear enough to see whatever is really there. I guarantee it’s important.

This is not navel gazing. This is how to understand where you fit in the world, where your perspectives come from, what contributions this makes you capable of or even obligated to, and what you can do about it. And it will go on your whole life. But the more you understand, the more power you have to do something good in the world.

Posted in family, history

America’s Atomic Veterans

Black and white photo of mushroom cloud in the distance with a number of men sitting on the ground in the desert, watching. Cacti are visible in between the men and the mushrom cloud.
Atomic bomb test in Yucca Flat, Nevada, April 22, 1952.

I was raised on stories of atomic bomb tests, witnessed from afar.  My father’s family were California Okies who lived and worked on a series of farms all over Kern County and Tulare County, California.  My father told childhood stories of seeing flashes on the other side of the Sierras, then watching the shock wave roll towards them.  The shock waves were often strong enough to  knock you out of bed, or knock water out of the irrigation canals.

I didn’t know this story, though, until my father wrote his memoirs in his late sixties or early seventies.  He was born in 1941, and this seems to take place in 1952:

One afternoon, I came home from school and there was a strange man in the living room talking to Dad and Mom.  He was one of Dad’s cousins and was home on leave from the Army.  I sat and listened with wide eyes as he described his participation in the atomic bomb tests in Nevada.  He along with many other soldiers had sat in a trench one mile from ground zero.  They had dark goggles and ear protection that was their only special equipment.  The bomb sat on a tall tower.  They were told not to look at the tower or to raise their heads above the edge of the trench.  Wen the bomb went off, Dad’s cousin saw a blinding flash, and was thrown backwards against the trench wall.  He said that the blast was deafening and that a sheet of hot sand whistled over his head.  We talked for a while and then he left.  I never saw him again.  Six years later, in 1958, I heard that he had died of leukemia.

-Ronald Baggs

That’d be my first cousin, twice removed.  (I had to look that up.)  Family history meets just plain history.

The American military carried out these bomb tests regularly, and often they tested the effects on American citizens.  Quite often, these were low-ranking military personnel who were not told what they were getting into and given no radiation protection.  This is besides the effects of fallout on civilians, which was a huge problem in Nevada, surounding areas, and anywhere else weather patterns happened to take it.  And testing on unwitting civilians, which happened as well.  And the civilians in the Pacific Islands who because of all kinds of racist and colonialist crap were even more disregarded by America and France and other places that nuked the crap out of the region than most people I just talked about.

The Only Country that Ever Nuked America Was America.

Sometimes, they even had their test subjects stand up and walk towards Ground Zero after the bomb went off.

Many people, like my grandpa’s cousin, didn’t survive long.

But many people did.  And many of them — and their children — had a lot of health problems that continue to this day, especially cancer.  They were sworn to secrecy (sometimes under penalty of treason), but many began breaking that silence in order to protest lack of compensation or apology for being made into human guinea pigs for nuclear weapons.

Today, they’re known as atomic veterans.  But most people don’t know, or only know in passing, that this happened, and what happened to them and their families.  The following Retro Report video is a good overview with lots of interviews with atomic vets and their families:

It makes the point that while nuclear testing officially stopped, there are still atomic vets from after that era:  People who were sent in to clean up earlier test sites.

This post may be late for Memorial Day, but on Memorial Day I always remember people like my grandfather’s cousin, completely forgotten casualties of the Cold War, killed by their own superiors in the military. They’re rarely given the recognition for this that they would be had they died in other military contexts.

Here’s a video shot by a guy whose dad died after being subjected to atomic testing in the Marines:

And he makes the also-good point that this is not a partisan issue, it’s a matter of basic respect.

So that’s what Memorial Day has had me thinking of.   I have lots of vets both living and dead in the family, but the only one I know of who died because of something that happened during his service was used as a lab rat in Nevada without being told.  My grandfather on the other side got a Purple Heart for a relatively minor injury in the Pacific Theater of World War II, but my other grandpa’s cousin got no recognition to my knowledge even though he died from the effects of the radiation.

Apparently they were usually sworn to secrecy under threat of treason charges, but he had no trouble telling family.  I imagine that was common.

They’re still fighting for recognition and compensation, to my knowledge.  The unfortunate joke among atomic vets — probably quite real — is that the government’s just waiting until most of them die.

And most people don’t even know they exist.

Posted in culture, family

It’s not a cowboy hat or an adventurer hat or a costume.

People react a lot to my hats.

dadhatanother
Mel wearing a brown brimmed hat I wear all the time.

Maybe it’s because I’m in Vermont.  I don’t know.  People come up with a lot of weird meanings for my hat.  They think it’s a cowboy hat.  Or an adventurer hat.  Or some kind of costume.  It’s not any of the above.  It’s my father’s hat.

Maybe it’s an Okie thing.  People wear hats.  Wearing hats has specific meanings I can’t put into words easily.  I can look back in generations of family photographs and find people wearing similar hats, similar clothes.

ancestors with hats
Some of my Okie ancestors, with hats.

My father always wore a hat.  But he wore them for different reasons.

One of my favorite memories of my father and his hats was the way he’d wear it when he was headed out to do something important.  He might still be wearing his usual jeans and shirt, but the hat meant things were important and he was dressing up.  You could tell by how deliberately he put it on.

And he wore these hats as if the hats grew out of his head.

I saw hats in family photos, hats on family members, I saw the way people treated their hats, the way they touched their hats, the way they wore their hats.  Hats are important in my family and culture.

Ron holding baby Mel.
My dad in one of his hats holding me as a baby.
Dad squatting in woods
My dad squatting in the woods in one of his hats.

When my father died, he sent me a lot of his hats, and a lot of his shirts and suspenders.  I began wearing his clothes, or his style of clothes, every day, including his hats.

People told me for the first time in my life I looked comfortable in my own skin.

Me in my dad's clothes
Me wearing my dad’s clothes and hat, feeling utterly natural.

It wasn’t a conscious thing.

But the clothes started looking like they grew on me, the same way they looked like they grew on him, the same way similar clothes look like they grew on many of our relatives who dress similarly.

I started feeling more connected to him.

It sounds like a cliché, but maybe some things are clichés for a reason:  Wearing his clothes made me able to feel connected to him, I found the parts of me that he left deep inside of me when I wasn’t looking.  It wasn’t about how I looked in the clothes, it was about how I felt in them.  I felt connected to him, connected to my family, connected to my culture.  I felt things that have no words, no names, more depth than you’d imagine from a set of clothing.

But then I always connected to the world well through objects and the connections between them.

And, it turns out, so did my father.

I continue to discover him inside of me in ways I could’ve never imagined.

I continue to discover the things he has passed down to me without word or instruction.

And those things, that love, are the most valuable things of all.  They form connections and bonds between people.  They’re important.

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Mel slouched over in bed wearing my dad’s clothes and hat, with my cat Igor looking on.
orangeshirtdadhat
Mel wearing one of my dad’s orange shirts and hats.

So when you see me in any of my dad’s hats.  It’s not a costume.  It’s not a cowboy hat.  It’s not an adventurer hat.  It’s a connection to things I didn’t even know were inside me, between me and my dad, between me and my family, between me and my culture.  It’s remembrance and love but it’s so much more.

People are often taught to view clothing as superficial and vain.  To view objects as just meaningless dead things.  But clothing can tell you a lot about where you come from.  It can connect you to your roots, however loving, uncomfortable, and complicated those roots might be.  It can be a reminder of who you really are.

I’m glad I wear my father’s hats.

 

Posted in Being human

I’m never waiting to be alive.

Dad holding Mel as a kidThe last time I saw my dad, he flew out to see me in Vermont.  I was in my early thirties, he was in his early seventies.  Older than just about any man on his side of his family ever got.  Both of us were dealing with serious health problems.  We never said it, but we knew we’d never see each other again.

I think he’d only heard secondhand and thirdhand about how I was doing, for a long time.  Neither of us were big on phones or emailing at the time.  He’d gotten some weird ideas into his head over the years.  But they’re pretty common weird ideas to have.

At the time, I’d been very sick for years.  Doctors really didn’t know what was going on, despite looking.  I’d bounced in and out of the hospital.  They’d find out pieces the hard way, but something more was always going on than what they’d expected.  They could never really figure out what.  I’d always get sicker than I should under the circumstances.  At home I was mostly in bed.  I’d use a tilt-in-space powerchair if I got up, but every second was exhausting.

Anyway, I wasn’t constantly looking for a cure.  I wasn’t holding out hope that one day someone would figure out everything, and my life would be better.  And longer.  And easier.  Or whatever.  That just wasn’t where I was focusing.

Somewhere along the way, he’d mistaken that for giving up on life.  People do that.  They don’t get it.  At all.  That that isn’t even the thing.  I wasn’t depressed or hopeless.  I was reasonably happy.  I didn’t have a death wish.  I hadn’t accepted my fate that I was just gonna die and that’s what happens to people like me.  It wasn’t any of the stories people tell themselves about disabled and sick people to make themselves feel better.  And I wasn’t doing what some disabled people do, I wasn’t repeating those stories back to myself.

I just wasn’t on their map of life at all.  And most people, they don’t want to look too hard at the place I was.  It scares them.

Anyway, my dad was genuinely worried about me.  I wanted to make him understand.  And I struggled to find words.

I told him I’m not waiting around to be alive.

I’m not staking my happiness on something that does not happen to most disabled people, ever.

I’m not staking my happiness on certainty.  Even healthy people don’t have the certainty they think they have.  Nobody does.  You can’t actually ever be happy that way, because you’re grabbing something that’ll never be there, unsatisfied without it.

Honestly I’m not even staking what I want to do with my life on happiness.  I’m reasonably happy, but if I’m not, I’m not gonna wait around to be happy before making a contribution to the world.

Because there’s nothing more that close shaves with death and living long periods of time with Death as almost some kind of companion that’s nearby but not quite there, has done to me, than made me want to do things for other people.  When I can, of course.  And not in the weird sense like you have to have a job to do that, because that’d be ridiculous.

Anyway, I was insisting pretty forcefully that I don’t know how much time I have and I’m not gonna spend that time waiting for something that just does not usually happen to people.  I’m going to do whatever I can with whatever I can to live the life I can, like anyone else.  I’m not different.  And I’m not fucking waiting around to be alive, especially if I don’t know how long I have.

I was pretty intense and fierce and passionate about this and he could see that.

And something shifted.

He went from seeing me as giving up on life, to someone who was living my life.

And I think he finally went from seeing me as a child he worried about to an adult he thought was gonna be okay.

I don’t remember what he said either.

I just remember you could feel the air shift, like he had not even realized what I was doing was a thing you could do.  And as soon as he understood, he knew I’d be fine no matter what happened.

We hugged, and we cried, and he left.

He died before I ever saw him in person again.

I… wasn’t cured.  But they figured out what was going on.  Really three things that were going on, one thing after the other after the other.  One I’d been born with, one probably developed ages ago, and one had started recently.  And they treated or modified my body to handle those things.  And I’m still alive long after I would’ve been if they hadn’t.

I’m not cured.

My life is not any more certain.

The treatments have their own risks.

I’m alive right now and that’s all any of us can say.

But my health is precarious.  It always will be.  Everyone’s is.  Mine is much more obviously and easily.

And all of us have to make a life where we are, not where we might have maybe could’ve been in the future sometime if we hoooooooooope enough for a cure.

Like yeah if they can do something that’ll keep me around awhile, I’ll do that, and I’ll adapt, like I already have.  But knowing how limited time can be, I’m sure as hell not gonna spend that time just waiting.  Even when I can do nothing else but keep my body breathing and my blood pumping and I look like I’m waiting, I’m still living.  Life hasn’t gone anywhere.

And really what already happened was extraordinary and rare.  The chances that all things came together so that I was still around and they happened to be looking in the right direction to figure things out (especially since they’d already tried those directions before, but wrong, and figured they’d found nothing)… that really doesn’t happen to too many people.  It makes a good story.  People like to find it inspirational.  It’s not.  I got extremely lucky.  If people sit around being wistful about that not happening, and not doing life in the meantime no matter what it looks like, they’re gonna have problems whether it happens or not.

And to be clear — I’m not half dead.  I’m not partially dead.  I’m not dead but still being kept alive.  I’m right here.

But I’m alive.  Until I’m not.  Like everyone else.  My body and my health and all that doesn’t change that in any way.  I’m not less alive, partially alive, technically alive, creepy-artificially alive.  And that’s gonna stay true no matter what until I’ve actually got a toe tag, guys.

(In which case have me composted and dump as much as you can of the results in the ground in Redwood Terrace as close to the Mother Tree as you can get, if you want to know.  But not until.  Geez.  I have all the time in the world to feed trees and fungus and crap, and I’m glad to do so, I think it’s a wonderful thing in fact, but I have to actually be a corpse first.  And there’s plenty of people who seem determined to declare me a corpse while I’m still breathing.  And I will fight them as hard as I can as long as I can for me and others.)

But right now. I’m alive. And I’m not gonna spend my life waiting for a cure that’s unlikely to happen. I’m living right now. Always. I don’t wait to be alive. And as soon as my dad realized what I meant by that, he knew I was gonna be okay no matter how long I had left.

Posted in Being human

My grandfather’s violin.

To call my grandfather a rat bastard would be an understatement.  He was callous, cruel, and didn’t seem to care about the suffering he caused.  It’s hard to describe his cruelty without clichés:  Molesting children, torturing cats to death, running over dogs on purpose for the hell of it.  This was not what you’d call a nice man, or a good man.  And he did cause a lot of suffering and death.

I know you’re not supposed to speak ill of the dead.  But describing his character in detail is necessary to understand what I’m trying to say in this post.  Because it would be hard to overstate his cruelty to animals and humans alike.  The main danger in describing him is to overlook the fact that even the cruelest human beings are still human beings, not cartoon caricatures of evil.

Anyway, my grandfather repaired and built musical instruments.  When I was young, I started learning the violin.  I was good at it for my age.  I didn’t know how good, which was probably a good thing:  I was being bussed to the junior high orchestra at the age of six, when most students started at nine and didn’t join the junior high orchestra until, well, junior high.  I was there in first grade.

My grandfather loved music.  Lest I paint too rosy a picture of him, he performed blackface.  So he could even find ways to make music a bad thing.  But he acted most like a decent human being in connection to music, of any time I ever saw him.

There was a violin he’d had for years.  It was older than he was, a student violin made in a German factory around 1914.  These kind of violins varied a lot in quality.  This one was pretty good.  He kept it in good condition for decades, and when he learned I played the violin, he sent it to me.  No explanation.  No conditions on what I needed to do to earn it.  Nothing I had to do for him in return.  This in itself was unusual for him.

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I have short arms.  And I was young.  So I couldn’t play this full-sized violin when I first got it.  I got to know it, instead.  I got to know it by the feel of the wood on my face, the smells, the sound of the body as I tapped it.  I got to know the blue fuzz inside the case, the little documents of its first sale, the history written in my grandfather’s old-fashioned handwriting, the smell of the old cake of rosin, the glint of mother-of-pearl on the bow, the smell and feel of the horsehair.  The violin became my friend.

Eventually I was able to play it.  Like always, I practiced all the time.  I loved playing, for its own sake.  I loved interacting with this friend in every way I could.  My arms and hands were small, and I had a neuromuscular condition that made it hard, painful, and tiring to hold it up at all, but I did all these things as long as I could, just to play it.

But then I had to repeat fourth grade in a new school.  This school had no music program, despite having a lot more money than the public school I had attended before that.  I fell out of practice.

I grew to fear this violin.  It was so old, I thought I’d break it.  I kept it with me into adulthood though.

And then one day in my mid-twenties I picked it up and started playing.  I was astonished.

I was not, and will never again be, good for my age at this point.  I’m too weak to put in the practice.  My technical skills have slipped.

But something else had grown inside me, with time.  Deepened.  And so had the violin.

So that when I played… I was no longer playing other people’s songs.  Songs were playing me.  Songs came out that talked about the redwood forest, my original home.  Songs came out that talked about everything that was happening around me and inside of me.  There was this resonating depth that I couldn’t shake.

And I could feel my feet.

Feeling my feet is always a good sign.  If I can feel my physical presence from head to toe, something is going very right.  It happens every time I pick up this violin and play it.

This violin came from my grandfather.  This thing that brings me in touch with the deepest parts of myself and the world around me, this lifelong friend and companion, this thing that has deepened me and deepened along with me.  Came from the guy who used to imitate the sounds of the cats he tortured, just to horrify me.

If you want to know what gives me hope in the world, it is that.

It is that good things can come from the worst places.  That some of the worst people we encounter can’t seem to help doing some things that are good, regardless of their intentions.

I’ve called myself the bleakest optimist you’re likely to meet.  It’s because I see the good in the world, but I don’t do it by ignoring the bad or pretending the bad is something other than what it is.

I think bleak optimism is what the world needs right now.

I think we need to understand that the world has people in it who torture cats for fun. And all kinds of other horrifying people and events.  But that sometimes they’ll give you a violin that does nothing but good.  For no apparent reason.

We need to be able to be realistic, yet to hope and see and create good things at the same time. It’s the only way to handle what the world has in store for everyone right now on so many levels.

And my grandfather’s violin is a good example of how I find that hope.