Posted in Being human, Monday / lundi / lunes / måndag / Monntag, Values & Ethics

Two Religious Traditions, Very Similar Message

A pslr left hand with blue shirt sleeve, holding a hazelnut.
A hand holding a hazelnut.
/./

And in this he showed me a little thing, the quantity of a hazel nut, lying in the palm of my hand, as it seemed. And it was as round as any ball. I looked upon it with the eye of my understanding, and thought, ‘What may this be?’ And it was answered generally thus, ‘It is all that is made.’ I marveled how it might last, for I thought it might suddenly have fallen to nothing for littleness. And I was answered in my understanding: It lasts and ever shall, for God loves it. And so have all things their beginning by the love of God.

In this little thing I saw three properties. The first is that God made it. The second that God loves it. And the third, that God keeps it.”

Julian of Norwich, English medieval mystic, Revelations of Divine Love

Some people take this as meaning that God will take care of everything and we have to do nothing. My take on it is that we have been handed this one fragile little place, that we wholly rely on, and that we need to take care of forever or we are in deep trouble. Then I ran across this, in a context that gave it a very similar meaning:

A tarot card, "The Sun of Life" from the Wildwood tarot deck. It shows a human figure standing in front of a blazing sun, with yellow light coming from the sun and white light

The Sun Of Life is a tarot card I ran across as the most important card in a situation involving the way the world is right now. The card depicts the idea that everything important in life, humans get from sunlight and love associated with sunlight. It reminds me of my need for fire in order to be alive, but even more so reminds me of Julian’s vision. It’s a picture of so much of what we have to lose, and how important it is not to lose those things. Also the artwork is beautiful2.


Footnotes

1 I am neither Christian nor neopagan, but I respect both of these and other forms of religion and spirituality. That respect means that I ask others to respect other people’s belief or lack of belief (atheists and agnostics welcome. too). You don’t have to agree with me or anyone else, just please be nice to people.

2 Wildwood Tarot deck. Mark Ryan and John Matthews, card illustrations by Will Worthington.

A stained-glas-looking portrait of Julian of Norwich in her ancorhold with a cat, writing in a book.

Julian of Norwich

was a medieval anchoress, a woman’s version of a hermit nun in Catholicism in those times. An anchoress would obtain her last rites and then be walled up in an anchorhold which was usually part of the church. She would have had both rules and freedoms that other nuns did not have. She stayed in the anchorhold until her death. Julian also happens to be the first woman to write and publish a book in the Engilsh language. Her Revelations of Divine Love, or Showings, detailing her spiritual experiences and how they changed her life. She was sometimes controversial for things like calling Jesus “mother”.

Probably because of this kind of thing, she almost but not quite became a saint in Catholicism, Lutheranism, and Anglicanism. But she is venerated in all of those denominations regardless of sainthood, and has been honored by these versions of Christianity.

Like many mystics, Julian was more concerned with her thoughts on God and theology than on getting personal recognition, so we don’t even know her name. Julian is the name of the church she lived in. Most of what we do know, is guesse based on what was probably going on when she was an anchoress. For many things, including whether she had a cat (anchoresses were advised to “keep no beast save one cat”), are just people’s guesses about her. But her hazelnut vision outlives her, and I seriously hope that everyone remembers we were given this little fragile world to take care of, it’s all we have, and now is the time, not years from now — we are already late but we can mkae a difference still.

Posted in Being human, family, friends, Monday / lundi / lunes / måndag / Monntag

I’ll never write this one if I try to explain it all either.

Understand guys — I wanted to make y’all a post. I know exactly how I want it organized. I know what I want to put in it. And the whole point is showing you I love you. But for whatever reason, I can’t write it as intended. It’s like walking through sludge until I’m surrounded by bramble and can’t find my way out in any direction. Then my head gets tangled up in everything else and I run off and don’t write.

The reason it was going to be so complicated was because I wanted to really pay tribute to each of the individual people in my life who currently count to me as family. This is difficult for many reasons. One reason is juggling privacy concerns — who to use names, who to use initials, what details to leave in, what details to leave out, what details to change. I’m not talking about legal limits on privacy, I’m talking about my attempts at common decency. Which are sometimes stricter.

So there’s a post I want to make, and I’m trying to make it. And I think I’m gonna succeed at making it, at this point. But this is the lead-in to it — that again, I’m having issues with trying to get everything said. So I’m trying again for allowing myself to write without writing as perfectly as I want to.

Because if I had my way?

I’d have a drawing for each and every one of you, or a photograph. And a little bit of commentary. And it’d all be done so that only some people were identifiable, and only in some ways, and so forth. And that’s just not how it’s gonna happen.

The most likely outcome is I’m gonna write a summary about my relationship to y’all and what it means to me, but without as much personalized touches as I would like. And then maybe the personal touches will trickle through to the light of day in the end when I’m done writing all this other stuff.

But for now? This is all I can promise. This post here. Because I already wrote it. But I am pretty sure I will be able to at least write a couple short posts. Where “short” doesn’t necessarily mean the post is short, it just means… something in my brain leading up to the post is shorter than it would’ve been otherwise.

This gets a little bit carried off into corners of my brain it’d never come back from — if I were to explain to you the communication and cognitive issues that I am having here? If I took more than just these couple sentences in this short paragraph, to describe it? I would never get the post written. So this paragraph has to be all, for now. Suffice to say temporal lobe epilepsy does not make for being an efficient writer.

Anyway I’m gonna go and try to write the best post I actually can write, as opposed to what I want to write, and that’s gonna have to be good enough.

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

Fear for Courage Friday

In Life’s name and for Life’s sake, I assert that I will employ the Art which is its gift in Life’s service alone, rejecting all other usages. I will guard growth and ease pain. I will fight to preserve what grows and lives well in its own way; and I will change no object or creature unless its growth and life, or that of the system of which it is part, are threatened. To these ends, in the practice of my Art, I will put aside fear for courage, and death for life, when it is right to do so — till Universe’s end.

Wizard’s Oath from Diane Duane’s Young Wizards and Feline Wizards series.
fear for courage Friday
Fear for Courage Friday

…To these ends, in the practice of my Art, I will put aside fear for courage…

Wizard’s Oath

This is a Friday topic about facing fear.

Many people who know me have compared me to Neville Longbottom. In that, like me, he started out timid and afraid of everything. But by the end of the series, he’s faced up to so many of his fears that he commits feats of extreme courage. Including deliberately facing the Cruciatus Curse, a spell that had been used in the past to torture Neville’s parents until they couldn’t function anymore. He faces up to his worst fears and then some to protect other children — and adults, but especially other schoolkids — from Voldemort’s followers.

Gryffindors like Neville are known for their courage, but people from any House can be courageous. And I’d argue that the different Houses emphasize courage in different ways, and different aspects of courage, although any kid from any House can of course have any kind of courage for any reason. The kind of courage Neville shows — putting himself into terrifying situations in order to protect others — is both emphasized in Gryffindor and Hufflepuff. Like Neville, I have a lot of traits of both Gryffindor and Hufflepuff and I do identify a lot with his character.

Part of all these new blogging ideas have to do with facing my own fears. So having one of the Friday topics be facing fear makes sense.

Mind you, fear isn’t bad in and of itself. But there’s allowing fear to guide you by giving you information, and then there’s having your entire life dominated by fear. And I don’t want my entire life dominated by fear.

I have a friend who says she chooses one new brave thing to do every day, and then does it. That would sound like an exercise from a self-help book without the background knowledge that my friend came out as bisexual and soon thereafter as a trans woman in the wake of the Orlando shootings. She isn’t screwing around, she knows what’s at stake, and she knows she wants to put herself out there both for her own sake and that of others. She doesn’t want to live her life in hiding. I had a similar reaction to those shootings, like I wanted to be more visible despite the danger. For many reasons, too complicated to explain if you don’t understand already.

When my father was dying of cancer, he said that dying of cancer was his worst fear. We talked about dealing with fear of death and dying. And I said that as far as I could tell, the only thing to make a difference to deal with that kind of fear is to find the deepest form of love — a property of the universe, not an emotion, in this case — and follow it wherever it goes.

My father took that advice and ran so far with it that my only fear is I’ll never be able to live up to his example. He died well, and bravely, and with love.

I have a few friends whose courage has been making national news with everything ADAPT is doing to try to secure rights for disabled people in America right now. It makes me proud to even be able to think to myself, “I know these heroes personally…” and not have it be some sort of inspiration porn thing.

Another friend graduated from college as a nonspeaking person with developmental disabilities and made a movie about it. Which anyone who’s been even just the first in their family to go to college knows is gruelingly difficult and full of new fears to face every day.

Honestly one of my fears is that I’ll never be as brave as so many of my friends and family and people I’ve known. I know a lot of really tough-as-nails people. But suffice to say I know a lot of really brave people and I hope it rubs off on me Neville-style. Unlike Neville I think I’m genuinely a Hufflepuff deep down, but courage isn’t just a Gryffindor thing.

But at any rate, this is the Friday topic for anything regarding fear, courage, facing fears, and things of that nature. Hopefully I’ll eventually have things to fill it up with.

My friend suggested that writing about my fears is itself a brave thing to do that can benefit other people. I think she is probably right.

fear for courage Friday
Fear for Courage Friday

Posted in Being human, Developmental disability, Epilepsy, fear, medical, Temporal Lobe Epilepsy

Showing Fear

This is the kind of vulnerability I have trouble doing well. If I give you an explanation of all the details, it’ll mean I won’t have to actually post the post itself. So — a friend told me, and I agree, that a really good post to get me started blogging as myself again, would be this: To think of everything I’m afraid of, and write about that. Even if it’s only two paragraphs. If I manage that — then maybe I’ll explain. But not before, or I’ll never, ever get around to writing about my fears.

Selfie while I was writing this. One of those “cat got too close to the camera” selfies. But does look scared. Because I am.

It’s hard to know where to begin. So many directions. Maybe start small, and easy, and manageable, and keep coming back to this.

Not that there’s anything small, easy, and manageable about fear. Whether the fear is rational or irrational.

Here’s one that seems irrational to me.

I’m afraid of my own medical conditions.

But not all of them. Only some of them. And I don’t always know what makes the difference.

I am not afraid of any of them all of the time, and I am only afraid of some of them, some of the time.

But here’s a couple that keep coming back to haunt me:

  • Congenital myasthenic syndrome1
  • Temporal lobe epilepsy2

I fear these things in many ways and on many levels.

For instance, I fear them both intellectually. Meaning — I’m afraid to do research on them. The fear is intense. So intense that when I was first diagnosed with CMS, I could not read about it no matter how curious I was.

I can give an example from right now.

I was pasting some basic information about these two conditions into my footnotes, to keep them separate from what I was writing.

And I saw a piece of information I’d not encountered before, or that if I encountered it, it wasn’t put in quite this certain way. Here’s what they said:

Some individuals have episodes of breathing problems that may be triggered by fevers or infection. Severely affected individuals may also experience short pauses in breathing (apnea) that can lead to a bluish appearance of the skin or lips (cyanosis).

And it feels like being zapped throughout my body, or splashed with cold water, or something else really unpleasant, every time I read something like this. Every time I read something that is so much like me.

And no this has nothing to do with how long I’ve known. I have only known about CMS for a relatively short time. But temporal lobe epilepsy was the first tentative diagnosis explored by the first neurologist who ever saw me — I was 12 or 13. People were constantly talking about TLE around me my entire childhood after that. It’s not like I missed the fact I have TLE the same way I missed the fact I have CMS (which my type could not even be diagnosed during my chlldhood. I didn’t always receive the correct treatment for TLE but even people who thought I didn’t have it never took the diagnosis off the table because it was so obvious.

But I felt the exact same way.

The exact same way.

When I found out that TLE, especially can result in someone who starts out without an intellectual disability and has one by adulthood… that zap felt like a million volts of electricity going off and then a strong urge to hide under something.

And I don’t mean I’m ashamed of any cognitive or intellectual disability I may or may not have. I just mean that I’ve known for a long time, from just putting two and two together, that it’s only an accident that I’m not officially diagnosed with an intellectual disability. (This is putting aside whether the category even makes sense to me. I can’t both write about this, and use words that reflect my experiences, at the same time. Sorry. So I’m using other people’s words and ideas, they don’t necessarily reflect how I view the world. If that makes no sense to you, deal with it — people sometimes seem to want me to walk them through my brain holding their hands to guide them, and I can’t always do that.)

And I’ve known that it’s quite likely that shifts in my cognitive abilities have made me more, diagnosable for lack of a better word, as I aged towards the various cutoffs. But I didn’t know there were many, many papers on the existence of ID and other cognitive impairments in older children and adults with TLE who didn’t fit such categories as younger children. Because TLE can cause both ongoing processing problems from the seizures themselves (just imagine having your experiences constantly interrupted by everything from lost time to random emotions that don’t seem to fit anything you ought to be feeling to… lots of things), and changes to the brain that stick around even between seizures.

In my case, by the way, my sense of time is heavily affected, my memory is heavily affected, and I suspect TLE being behind a good deal of fluctuations in my abilities.

My second mom says she’s struck, living with me, by the degree of my time problems, memory issues, and visual processing impairments. She knew about them before, but I’ve been here a long time and she’s getting to watch me 24/7 whether she wants to see all this or not. What she sees scares both of us in various ways, I think.

Visual processing issues, by the way, are another disability-related fear that I ought to write a post on sometime. It’s an entirely different fear for entirely different reasons — the fear of the pushback I would get for using the equipment I need to successfully navigate the world the best I possibly can. To the point I won’t get the equipment even though I am nearly positive I would easily qualify, as are other people who know me.

But… yeah.

So there’s this thing about learning about certain disabilities I have that utterly and completely scares the bejeezus out of me sometimes.

As I said — not all disabilities, medical conditions, and whatnot strike me this way. Most don’t.

But when they do.

It really feels like they strike me. Like something is hitting me over the head, or zapping me, or splashing cold water in my face, or doing something else sudden and unpleasant.

And there’s degrees Like, the thing about apnea zinged me a little (I do have apnea, and in particular that little line about turning blue reminded me of a time an LNA walked in on me while I was in bed but awake, stared at my face, looked utterly terrified, jumped a mile when I moved, and then explained to me that my face was blue when she walked in and she thought I might be dead, and there’ve been other times people say I’ve looked blue or grey). but the thing about ID and TLE felt like a full-body jolt that made me want to hide long-term.

And yes — it scares me to tell you this. It scares me to talk about fear in public. But I trust the friend who told me this was a good idea.

And hopefully I’ll write more, because this is only one kind of fear, and I haven’t even covered it as thoroughly as I’d like.

I want to write about another kind of fear related to seizures, something closer to home than this intellectual fear, something about things I keep semi-secret some of the time. Like how much of my life is spent in states where my conscious memory is resetting itself so thoroughly that I can barely look oriented let alone be oriented.

It’s like waking up to a new life — way too frequently — and I want to write about that.

But I’m working up to it. An intellectual fear, no matter how intense and irrational, is still easier to write about than some of the other kinds of fear I have. This is a fear of information. Or at least, information is the trigger.

But there are much more gut-level fears I have about TLE in particular, than just finding out that it has thus-and-such effect on such-and-such other condition in this-and-that ways. It’s the actual experiences of it that scare me, and if I’m looking at disability-related fears that’d be where I went next probably.

There’s also a fear in between the two types… like when I finally find a journal article about someone else with a missense AGRN mutation, only to see a little boy in black and white photos with his eyes blocked out and postures that look like mine or an exaggerated version of mine and… sheer terror and I want to run, and understand I am not afraid of the boy, I am afraid of everything that kind of picture represents about his life and mine, all the stories of public stripping from people my age and older, and… and… and… yeah, that’s its own kind of terror. But it’s also the shock of recognition, the sense of shared experience, and the fear of what he and I have in common resulting in being treated horribly for either him, me, or both, now or in the future or the past or sometime (don’t get me started on time again).

Who knows what I’ll actually get written. But I got this written. And that’s something. No, that’s a lot. I want to write about things that are authentic to my life, not just things held at arm’s length where it’s easy to examine them. And things that are just human being things. People things. Relatable things. Like fear, I guess.

Because I do spend a lot of my time rather terrified of lots of things. And so do lots of other people. And maybe being open about it can give us all more courage.


Footnotes

The reason for these footnotes is to keep huge amount of information out of the post so I can go ahead and write what I’m trying to write without getting distracted by, for instance, medical details.

1 Congenital Myasthenic Syndrome as defined by NIH Genetics Home Reference:

Congenital myasthenic syndrome is a group of conditions characterized by muscle weakness (myasthenia) that worsens with physical exertion. The muscle weakness typically begins in early childhood but can also appear in adolescence or adulthood. Facial muscles, including muscles that control the eyelids, muscles that move the eyes, and muscles used for chewing and swallowing, are most commonly affected. However, any of the muscles used for movement (skeletal muscles) can be affected in this condition. Due to muscle weakness, affected infants may have feeding difficulties. Development of motor skills such as crawling or walking may be delayed. The severity of the myasthenia varies greatly, with some people experiencing minor weakness and others having such severe weakness that they are unable to walk.

Some individuals have episodes of breathing problems that may be triggered by fevers or infection. Severely affected individuals may also experience short pauses in breathing (apnea) that can lead to a bluish appearance of the skin or lips (cyanosis).

As far as anyone knows, I have CMS8, which I’m only mentioning because I remember one of my readers being a genetics geek. I have an AGRN mutation.

2 Temporal Lobe Epilepsy as described (in terms of most common seizure type) by the Mayo Clinic:

Temporal lobe seizures begin in the temporal lobes of your brain, which process emotions and are important for short-term memory. Some symptoms of a temporal lobe seizure may be related to these functions, including having odd feelings — such as euphoria, deja vu or fear.

Temporal lobe seizures are sometimes called focal seizures with impaired awareness. Some people remain aware of what’s happening, but during more-intense seizures, you might look awake but be unresponsive. Your lips and hands may make purposeless, repetitive movements.

Temporal lobe seizures may stem from an anatomical defect or scar in your temporal lobe, but the cause is often unknown. Temporal lobe seizures are treated with medication. For some people who don’t respond to medication, surgery may be an option.

An unusual sensation (aura) may precede a temporal lobe seizure, acting as a warning. Not everyone who has temporal lobe seizures has auras, and not everyone who has auras remembers them.

The aura is actually the first part of a focal seizure before consciousness is impaired. Examples of auras include:

  • A sudden sense of unprovoked fear or joy
  • A deja vu experience — a feeling that what’s happening has happened before
  • A sudden or strange odor or taste
  • A rising sensation in the abdomen, similar to being on a roller coaster

Sometimes temporal lobe seizures impair your ability to respond to others. This type of temporal lobe seizure usually lasts 30 seconds to two minutes. Characteristic signs and symptoms include:

  • Loss of awareness of surroundings
  • Staring
  • Lip smacking
  • Repeated swallowing or chewing
  • Unusual finger movements, such as picking motions

After a temporal lobe seizure, you may have:

  • A period of confusion and difficulty speaking
  • Inability to recall what occurred during the seizure
  • Unawareness of having had a seizure
  • Extreme sleepiness

In extreme cases, what starts as a temporal lobe seizure evolves into a generalized tonic-clonic (grand mal) seizure — featuring convulsions and loss of consciousness.

To be even more specific, what starts as a temporal lobe seizure can migrate damn near anywhere it wants to. I’ve never had a tonic-clonic seizure, but I’ve had plenty of absence, atonic, and myoclonic seizures along with the classic complex-partial and simple-partial that most of my seizures consist of. You can read more about generalized seizures here at Johns Hopkins Medicine. They also happen to have a good page on focal epilepsy (of which my seizures are merely one type) and a decent one at their children’s hospital on temporal lobe epilepsy.

Posted in Being human, family, food, friends, medical, people, tube feeding

My big dream in life.

I don’t think this life is going to happen.

But here would be my dream.

It’s very simple.

I’m 80 or 90 or something.

So’s Anne. I assume so is her SO. And my other roughly same-age friends (for some reason I don’t have many) like Joelle.

We get to hang out as old people and reminisce over a lifelong friendship.

That’s what I want.

I don’t expect it.

But it’d be massively cool.

Anne is kinda my cognitive doppelgänger. She’s the other human in this picture (her SO took it, so he’s kinda in the picture if you count behind the camera as in the picture):

Anne, me, and Igor. All with weirdly similar posture and facial expressions.

I want to be old and I want Anne to be old.

That’s what I want in life.

Full head of grey hair and a friend or two to use up all that time with. And as many cats as can safely work out for everyone.

As it is, I count every grey hair as an accomplishment. And right now I’m working on making it to 40, which I had a good chance of never seeing, so that’ll be an accomplishment too.

I don’t think it’s wrong to want this.

I do think it’s realistic to expect it’s unlikely. But there’s a chance. I’ve got some good longevity genes. They might make up for all the other crap. They sure have with my mom, who’s managed to survive a number of codes with some of the same conditions I have and is in her seventies. Her mom’s in her nineties.

Anne does longevity research for a living, and says I actually have longevity genes that are known about. I could’ve guessed it from the long lives of many of my relatives, but it’s reassuring. Some part of me wonders if the longevity genes are how we survive to adulthood at all with some of the medical crap running in our family.

But at any rate, that’s most of what I want out of life. No matter what my life looks like at that point — that’s part of the interest in life, is you can’t predict it. Right now my life is looking kind of sucky from the outside, but I value being alive just as much as ever, and I can’t stand the idea that being old or disabled is a ~fate worse than death~ and all that. Right now I’m living on a bed in someone’s living room and we’ve both been in the hole financially since the beginning of the month, and that’s just the start of a long description I won’t go into. Suffice to say that my sense of time makes managing finances without help about as possible as managing meds without help. We’re tightening our belts, but it’s hard.

But basically.

I just want to be around for life. I don’t need to be healthy, I don’t need to avoid dementia or anything like that, I just want to be there. I’ll have plenty of time for death when my time comes.

But I already feel lucky.

Because I’m here and I have had so many times I almost wasn’t.

I’m already older than I or medical professionals predicted.

Nobody — nobody — is guaranteed any time at all. We get what we get.

So every moment we’re alive is a chance to experience that life, to live, to love.

And every piece of us is gunning for us.

And then in the end we die and get to become part of other kinds of life, that wouldn’t be here if it weren’t for us. Just like the mushrooms and asparagus in the fridge — some of our last fresh veggies my roommate made into a delicious tube-soup for me — get to be part of me in a minute. They had their time to be part of a fungus and a plant respectively, and now they get to be part of a human being and the assorted things that live in and on the human being. I love the idea of being part of that whole chain of life.

But I still want to be here as long as I can.

And I do love that this is biologically a part of what life wants, so this isn’t just a directive from my brain, it’s a directive from every living part of my body. And I do feel like I have to take into account the opinions of things most people don’t think of as having opinions. I think of humans and other animals as basically very very very weirdly complicated and specialized fungus-like or slime-mold-like creatures living together and cooperating inside portable bodies, alongside assorted hangers-on and symbiotes.

Not exactly, but that’s as close as I can get with words, so take it or leave it. I think it’s cool. And given how much I rely on my entire body, I care quite a lot about my survival as an entire organism, not as a couple of thinky bits that like staring at themselves a lot. Don’t get me wrong, I like my thinky bits as well as the next animal, but they’re not all there is to me. And I think things with thinky bits do tend to get a little bit intellectually vain about the whole matter when it’s just the way our bodies grow.

So.

Grey hair. Friends. Cats. Longevity, or hell, even just slight old age. Want.

Posted in Being human, death, Death & Mortality Series, family

Saying goodbye to my dad.

Towards the end of 2014 was also the end of my dad’s life. He died at home. In his last few weeks, he couldn’t speak anymore. I was too sick to travel all the way across the country and into my parents’ house in the middle of the mountains. So I was the only member of our immediate family who couldn’t come to see him in person. And I couldn’t speak either.

We’d been doing video chats on Skype a lot. He’d talk, and I’d type, but mostly we just hung out and loved each other. But now neither of us could talk and he couldn’t type either.

When he became unable to talk anymore, my mom set up their laptop on my dad’s hospital bed, and started Skype video chats for us. Instead of talking or typing, we just stared at each other, and loved each other. And that’s how we said goodbye.

I never knew there were any photos taken at the time, but during the hospital stay after I broke my back a second time, my mom sent me this photo of me and my dad Skyping. I’m really glad to have these memories. I’m really glad we had the chance to say goodbye. I feel amazingly lucky for that.

My dad lying in a hospital bed doing a Skype video chat with me on a small laptop.

When he died, he sent me a chunk of his beard hairs. (When I was little, he always let me play with his beard and his loose skin.)

I have been wearing those in floating lockets ever since, and they’re really beautiful. Photos don’t do them justice. But I’m able to walk around with a piece of his beard worn as jewelry every day. My mom sent some more beard when I was in the hospital, because somehow in the lead-up to the hospital stay I lost my other locket, and my spare beard hairs are in a drawer somewhere inaccessible to me right now. So when she sent the other beard hairs, I was able to put them in a new locket. I’m equally grateful to have something physical and tangible to remember him by any time I want to. Beard hair is more durable than memory sometimes.

My father’s grey beard hairs in a circular metal floating locket.

And I’m really glad to have a father who understood how much can be said without saying it, who knew how to communicate using objects, and who spent his last days doing his best to love as much as he possibly could.

Posted in Being human, cats, joy, Uncategorized

Friendship and Love and Resonance and CATS! A closer look at that picture.

This image has an empty alt attribute; its file name is 59903739_10157126139598618_7669595689709469696_n.jpg
Anne, Mel, and Igor, all with the same expression somehow a bit and looking kinda cattish.

It’s good to see friends.

I remember what’s underneath the visit.

I remember pain and stuff.

I remember emergency speech.

I remember what’s underneath though.

And that’s what matters.

Underneath there’s me and Anne and everyone.

I love Anne.

I love Cal.

I love Joelle.

I love Ruti.

I love Laura.

I love lots of people I haven’t named.

I rarely get to talk to my friends. Even online. We rarely keep in touch. We all have huge trouble doing that. It’s the worst part of inertia.

I hate the myth that we don’t or shouldn’t need friends. It’s fine not to. But it’s totally okay to want and need people in your life and most people do, even most loners.

I hate the community norms in some places where it becomes almost a macho one-upmanship thing to show how unsocial you are. Like… I once described it as “A whole bunch of people socializing by competing about how much they claim to not need to socialize.”

It’s okay to want to socialize.

It’s okay to socialize.

Never let a label determine what you think you should want.

Not even a label you like or that is useful to you. If it starts ruling you instead of you using it something’s wrong.

Someone once told me “You’re allowed to want people in your life, you’re just not allowed to need them.”

I knew where she got that. And it was not from someone who said “allowed”. It was from someone describing their own experience only. But somehow other people turned it into “allowed”. And that’s bad.

Anyway.

It’s okay to want people in your life.

It’s okay to need people in your life.

Both of these things are equally okay.

It’s okay to like people.

It’s okay to love people.

It’s okay to socialize however you want to as long as everyone involved is really okay with it.

There’s a terrible kind of isolation very few people admit exists.

In systems like the developmental disability system sometimes all the people you ever see are staff.

For those unaware staff doesn’t mean what it seems to mean to most people. For DD people having staff means having people with lots of power over you, it’s the people who are supposed to be taking care of you. But they may or may not be. And whether they’re amazing or terrible and helping or hurting or whatever — they have power over you that you don’t have over them. Nobody can wish that away or make it go away just by wanting it to or trying. The power is built in to the job.

And sometimes every single person I interact with for months is staff.

I actually usually like staff.

But.

They’re not the same as friends.

Not the same as strangers either. It’s a personal relationship and pretending it’s not doesn’t work any more than pretending it’s a friendship works.

But it encloses you in the agency.

It wraps around you.

If all you see is staff.

All you see reflected back at you has an agency distortion.

Even if every single person individually sees you as a person.

This still happens.

It’s just not the same as having friends.

And.

I started having friends again.

Ruti. Joelle. Cal. Anne.Paragraph

And.

I was a person again.

And.

I realized I wasn’t anywhere near a horrible a person as I thought I was.

Lots of other things too.

I realized my love meant something to other people and that other people loved me.

Both of those things are important.

So many things about myself and my friends and friendship and being human.

And I started to feel human.

A little bit.

I felt like I’d woken up from a weird sleep.

It’s how I feel around people who just want to be around me and I want to be around them.

That’s why Anne and Igor and everyone are so important. Even when we don’t see each other online or off for years. We want to but we can’t always and sometimes it hurts. But knowing each other at all counts for something. And I wish we could all communicate with as many others as we want to as much as we want to in the ways we want to. Because I’ve missed years of contact and I’m sure the others can say the same or more.

This picture isn’t just about pain, it’s why I wanted to post it again.

It’s about love.

It’s about being human.

I have a different kind of relationship with each of my friends.

With Anne it’s partly built on so much of our lives and brains working the same way.

If you ever read the book Loud Hands I have an untitled chapter. It’s about Anne. I can’t do us justice here but that’s the closest I’ve come to doing our friendship justice anywhere.

Anyway we read each other underneath everything. The words almost don’t matter. We exist and resonate.

And for that friendship that’s how it works.

So the picture is about resonating and friendship and love and humanity and all kinds of wonderful things.

And CATS.

Those are all in there too just as much as pain is.

I want to post that picture to celebrate knowing Anne and friendship and love in general and the amazing luck of finding those things at all, for a lot of us who never expected it or even really knew what a friend was. And the importance of all this when you have it.

And so many more things I can’t name.

There’s a lot in this picture that’s really beautiful about friendship if you know what you’re looking at.

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Anne and Mel and Igor in Mel’s apartment.

The pain isn’t separate from it either. It’s not some extra thing. If it’s part of my body right then it’s part of the picture too. But so is the love and the resonance and the catness and all the other things. They’re all wrapped in together because that’s how life works. It’s all there underneath if you know how to look for it.

I love all my friends whether I named you or not and you’re all important to me and I care about you and wish we could interact more in whatever way worked best for us.