Posted in family, friends

What family means to me.

Family means everything to me that it means to most people, but it also means more things.

“I love you” in American Sign Language with a rainbow hand.

Which means when I use terms like birth family I am not using them the way some people use them. I am not using them to either make it more or less family. All of my family is family no matter how they came to be a part of it.

I do not like using the words chosen family. I think that is a wonderful concept for those who experience it that way. It’s not how I experience family at all, no matter who the family are. I have not chosen a single relative, whether biological or not.

I won’t get into what makes someone family if they’re not biologically related. I’d never finish the post.

But love is a lot of it. And being in my life in certain ways is a lot of it. And I’m incredibly grateful to everyone who has become my family in this manner.

But the important part.

The really important part.

Is this.

Having non-birth-related family does not take away from either my relationship with my biological family, or my relationship with my non-biological family.

And I do not, in my head or my heart or anywhere else people use as words for thoughts and feelings, I do not put either biological or non-biological relatives as more or less important, more or less loved, or more or less part of my family.

You’re all family.

And I love y’all. Every single one of you.

And I’m sorry I couldn’t make you the post you deserve.

But I did my best.

And the post got written.

And that’s something.

No, it’s a lot.

But thank you all for being in my life and making it better even though I am terrible at keeping in touch with other people. You all matter to me and having, say, a second mom, doesn’t mean I don’t also have a first mom. and these are all just bad translations of family relationships. But the big thing: More family means more people I love, it doesn’t mean dividing people into greater and lesser parts of my family. And yeah I don’t get along with everyone, but that’s true of every kind of family I’ve ever heard of.

Thank you for being out there.

Thank you for being my family.

Sorry, again, that I haven’t been able to make you the post that you deserve. But I love you, both people I know and people I don’t. people I’m related to by “blood” and otherwise. And again the reason I don’t use the term chosen family is because I didn’t pick anyone out any more than my biological family picked me out. My non-biological family are no more chosen than my biological family, and chosen doesn’t make anyone better or worse than anyone else, or more or less close to me, or more or less loved.

Also I have both immediate and distant relatives, and living relatives and ancestors, within my non-biological family. Just as there are in my biological family.

So. All of you: Thank you. I love you.

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

Friends and Family Friday

friends and family Friday
friends and family Friday.

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

Posted in 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, cats, joy, Uncategorized

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

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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.

This image has an empty alt attribute; its file name is 59903739_10157126139598618_7669595689709469696_n.jpg
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.

Posted in cats, death, poetry

R.I.P. Nikki

Nikki, a Siamese cat, looking watchful from a tree branch.
Nikki, a Siamese cat, looking watchful from a tree branch.

My best friend’s cat Nikki just died.  Nikki was an amazing cat, and very complicated and hard to sum up easily.  She was a lot like Fey in parts of her personality and body language, but Fey was a Gryffindor and Nikki was a Slytherin, for whatever reason.  She was, to my knowledge, 17, the same age as Fey when she died.

My favorite thing Anne ever wrote about her was Nikki the Guarding Cat.  There’s also Meet the Cats: Nikki.

She always lived her own way, and died her own way, fortunately peacefully while unconscious, despite it being bowel cancer.  She seemed to be in less and less pain towards the end, which is oddly how my father experienced his death from cancer.  (Not what you’d expect, but it happens.  He had no pain the last two weeks of his life, he said it just vanished and never came back.)

She was in many YouTube videos like these, with Brodie (who is Hufflepuff to the core):

He was the first of the younger cats (a trio of formerly feral littermates) to be able to approach her because his social skills are amazing and he gave her the respect she commanded.  (She always acted a little like royalty and expected to be treated as such.)

Brodie and Nikki touching foreheads with love and respect.
Brodie and Nikki touching foreheads with love and respect.

Brodie actually, while she was dying, mirrored her movements for 20 minutes one night, almost as if to show her that he’d be able to take over guard duty when she was gone and she didn’t have to worry about that.

All the other three cats (Coraline, Brodie, and Shadow) clustered around her and kept watch while she was dying.

Nikki on the couch she spent most of her time on while dying, with Brodie, Coraline, and Shadow all lying down nearby keeping an eye on her.
Nikki on the couch she spent most of her time on while dying, with Brodie, Coraline, and Shadow all lying down nearby keeping an eye on her and keeping her company.

Anyway, the only poem I can offer in tribute to her is by Longfellow, “The Light of Stars”:

The night is come, but not too soon;
  And sinking silently,
All silently, the little moon
  Drops down behind the sky.

There is no light in earth or heaven
  But the cold light of stars;
And the first watch of night is given
  To the red planet Mars.

Is it the tender star of love?
  The star of love and dreams?
O no! from that blue tent above,
  A hero’s armor gleams.

And earnest thoughts within me rise,
  When I behold afar,
Suspended in the evening skies,
  The shield of that red star.

O star of strength! I see thee stand
  And smile upon my pain;
Thou beckonest with thy mailèd hand,
  And I am strong again.

Within my breast there is no light
  But the cold light of stars;
I give the first watch of the night
  To the red planet Mars.

The star of the unconquered will,
  He rises in my breast,
Serene, and resolute, and still,
  And calm, and self-possessed.

And thou, too, whosoe’er thou art,
  That readest this brief psalm,
As one by one thy hopes depart,
  Be resolute and calm.

O fear not in a world like this,
  And thou shalt know erelong,
Know how sublime a thing it is
  To suffer and be strong.

 

Nikki, an elderly Siamese cat, on the couch.
Nikki on the couch.

Nikki standing on a fence watchfully, underneath her there is a red “BEWARE OF DOG” Sign that has been altered with yellow paper to read “BEWARE OF CAT“.

I would indeed beware of Nikki.  A cat who can never be summed up no matter what you do.  May she rest in peace.

Posted in Being human, crochet

My friend can feel her feet.

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

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

But then there’s the other reactions.

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

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

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

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

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

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

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

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

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

Her existence is not an invitation to a debate.

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

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

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

It really doesn’t.

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

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

Sometimes you’re not gonna understand.

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

But none of that matters, actually.

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

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

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

Those are the only things that are important.

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

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

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

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

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

Just have some respect.

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

So I’m crocheting her shawls.

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

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

purple mohair shawl 1
The first shawl I crocheted my friend, a lacy purple mohair shawl.

purple mohair shawl 2
Closeup of the lacy purple mohair crocheted shawl with a lighter purple border.

woolshawl01
Mel holding up the full length of a thick wool shawl in bright striped colors of purple, pink, blue, and green.

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

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

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

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

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

It really comes down to that.

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

Just her.

Living her life.

Which is not an invitation to a debate.

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

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

My friend can feel her feet.

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

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

But look:

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

End of story.  Nothing else matters.

 

Posted in poetry

Thirsty

lemonade springs
Child-Mel sitting on rocks by a mountain spring with a cup of lemonade & a goofy expression

I’ve learned to sustain myself
In tiny drops of water
From oases so small
They’re invisible
To the naked eye

You flow over jagged rocks
Like a mountain spring
That reminds me
I’ve forgotten how
To be thirsty