Rule Number One

We need to talk. I know we’ve probably not met and we’ve never said word one to each other online because I filter the hell out of my Facebook and you probably don’t go to Tumblr because it’s incomprehensible and I usually don’t get into it on those comment threads. But you need to hear this.

So, I adore your kids, okay? They’re amazing. They are bright sparks in a hard world. They’re looking around at a society that is far stranger than the one I grew up in, and let me tell you, Oregon in the 80’s and 90’s was pretty dang strange. And they’re trying to figure out who they are and where they fit.

These are kids who have loving hearts, who genuinely want to make the world a better place, and find their place in it. They want to make things better for poor people and children, and they want to help keep people safe and they genuinely want to do the right thing just as soon as they can figure out exactly what that is.

I need you to stop breaking them.

In my world, rule number one is “Mama loves you.” Not, “Mama loves you if you go to college and marry a nice person of the opposite sex and dress like people expect you to and get a job that is socially approved with sufficient status.”  Not, “Mama loves you if you go to the right church and wait until marriage to have sex.”

Just, “Mama loves you.”

Here are things that don’t matter when it comes to rule number one:

  • The clothes someone wears
  • Who they love
  • What pronouns they use
  • What sex acts they do, and with who
  • What church they go to or don’t
  • Whether or not they are gainfully employed
  • Whether or not they go to college at all or finish in four years
  • Whether they identify as the gender they were assigned at birth due to inny or outy bits
  • Tattoos
  • Piercings
  • Hair color
  • Who their friends are
  • Who they vote for
  • Mistakes they make and trouble they get into

Now, I get having hopes and dreams for your child. I’ve got three children and I’ve poured my life into them for 23 years. I get having expectations and wanting to provide them with a solid start in this difficult world. But there’s a right way to do that and a wrong way. It’s one thing to help your kids understand your values. But if the value at the top of the list isn’t “Mama loves you” (or parental/quasiparental tag of choice), I’m sorry, the moment your child realizes that they can’t meet your ideal for them, there’s an awfully good chance they’re either going to break, or you’re going to lose them, or both.

You need to understand that you cannot stop a child from being gay, or trans, or bi, or nonbinary. It’s not about “how you raised them”, it just is. And the more you make them feel “wrong”, the less they’re going to care about doing right. The less you love them, the less they will feel lovable, and the more likely they’re going to go looking for that love in harmful places. You can’t make them gay, but you can make them broken.

I am losing count of the number of teenagers I have had in my house or in my inbox or chat talking about how they can’t tell their parents who they are because they are afraid. Kids who did tell you who they are, and you kicked them out, because “not under your roof.” Kids who struggle for years to get back to a healthy place where they place enough value on their own bodies and souls that they don’t go out doing the exact risky and scary stuff you’re afraid of because it doesn’t matter, they aren’t worth it, you told them so.

I spend a lot of time telling them how worth it they are. And they are. These are beautiful souls who, given a chance, will pour their whole selves into helping someone, into making a difference. They have so much to offer, but you make it all harder by teaching them that they don’t.

I love your kids, but it hurts me when they hurt, and I need you to stop breaking them. Stop worrying so much about their immortal souls and worry a lot more about their hearts. Stop worrying about what the neighbors will think, and start worrying about whether your child will survive.

So… stop asking your kids when they’re going to give you grandchildren. Maybe they will, maybe they won’t. Stop asking them when they’re going to get married, because the last thing you want for them is for them to end up with a bad marriage for the sake of being married. Stop judging the work they’re doing, and the friends they have.

You can tell them it’s okay to stand up for themselves. And accept it if they stand up to you. Listen. Don’t get defensive.

You can tell them it’s okay for them to expect people to treat them well. And then you better treat them well.

You can tell them it’s important to try hard and do their best. But don’t tell them they have to be the best. Don’t make your love contingent on victory conditions. Some of the best people in this world never won anything.

You can say that you worry about risky behavior because you love them and you want them safe, but don’t you dare kick them out and make them even more unsafe.

Teach them that you value them, not that they are worthless.

You can even teach them about your religious beliefs, but don’t you dare put them in hell on earth just because someone told you they might go to hell someday. I’m fairly certain if Jesus exists, he judges people more harshly for cruelty to their children than he does for who they sleep with or whether they have tattoos, that was pretty clear in the bible I read. Jesus was all about embracing people society couldn’t stand. Try being more like that.

I love your kids. They’ve slept on my couch and they’ve lived in my house and they are always welcome here. But it would be a better world if they didn’t end up broken to begin with.

Rule number one. Please. I’m begging you. Make sure they know it. Tell them it doesn’t matter. Tell them you want to understand but you don’t need to understand in order to keep loving them. Tell them they deserve love, and happiness, and joy and all good things, and that you know that their path in life may not look like your path but you want to be a safe space for them to come home to. That you don’t have to agree about politics or religion or social issues or any of those things, that they’re still worthy of all that life can give them.

And if that little person you thought was a boy comes to you and says that she’s a girl, your response there is a life-and-death issue. Their future happiness and ability to survive adulthood depends on what you say to them. And if it’s anything other than, “I love you, let’s figure this out and find out what you need to make you happy,” you’re playing with fire, because the biggest difference in whether or not a trans kid survives (yes literally survives) their teen years and young adulthood is whether they get support and acceptance or not. Your attitude can literally kill them.

Rule number one.  Mama loves you.

Because while I will always keep my home open for them, I’d rather they not need me. I’d rather not have to build them back up and explain to them how you forgot the important thing.

Rule number one.

Writing advice

So I’ve been delving into the strange world of Tumblr. I said for years I didn’t understand it. Then I got into the Merlin fandom, started poking around, realized that no one understood Tumblr, and started using it a lot.

So this floated across my dashboard today:

http://jenroses.tumblr.com/post/142197757771/how-do-write-good

If Tumblr frightens you, the answer I wrote is here:

The question was, “how do write good,” (sic) and Maureen Johnson gave a succinct answer I felt could use some elaboration.

Write. Write more. Ask for constructive criticism. Cry. Get angry. Do what they say. See how it makes it better. Buy your editor/beta reader/tolerant friend flowers or chocolate or something and then write more.

Read. Read amazing writers, read amazing storytellers, note that sometimes the two things aren’t the same. When something you read makes you happy, think about why.

Then write more. Write nonfiction. Write short paragraphs. Write drabbles. Write poetry. Write short fanfiction. Or long. Or your own stories. Write what moves you. Explain things to people with your writing.

Read about writing. Read about language. Read about structure. Read about why things work, why they don’t. Understand the rules. Write until your editor only makes small changes in grammar (and sometimes they’re wrong and you know it but you always listen because if it caught their attention something about the flow is probably off.)

And ultimately? Break rules if there’s a good reason to. Don’t let other people’s ideas about writing get in the way of good storytelling. A few million words in, you’re going to know to your bones when you need to be scrupulously formal and when you need to throw that to the wind because that character over there? He says “Ain’t” a lot, and no one speaks in complete sentences all the time.

But throw all that out the window for a moment, because you can stick your face in a computer screen for decades and never live enough to have a damn thing worth writing about. Go out into the world. Experience love. Experience failure. Have crowning moments of awesome and be crushed by devastating tragedy. Feel the wind on your elbows and smell things that no one should ever have to smell. Think about how you would tell these things to someone else, about how you would help them experience what you’ve experienced.

When you know enough about writing and life to be able to put someone else in your shoes and have them feel the blisters? You’ll write good.

Shiny’s current meds, logic, and dosing

Because this comes up all the time.

CoQ10:

91yOlO9D66L._SY679_   vitaline coq10 bottles and wafers

 

 

So both of these brands use Vitaline CoQ10, which works VERY well. The claim is that this form crosses the blood-brain barrier better, and I’d have to say that the results are definitely more noticeable than Trunature, which we used before (and did have good effects and raised her blood levels very high, but which did not have as profound an effect on Shiny’s language.)

Natrol was terrible, and I think their supplier was fraudulent. Be careful. Other people have used Qunol to good effect, but Shiny can’t tolerate the citric acid.  I found the best price normally at Vitacost for the SmartQ10, but Naturedoc has by FAR the best price on Vitaline 400 mg (by $57 per bottle!). The difference between Vitacost and Amazon on SmartQ10 is very small, so get that one where it is convenient.

Shiny’s CoQ10 dosing is approximately half her weight in pounds, with a zero tacked on, in milligrams. Rounded up always. She’s currently 70 pounds, give or take, and taking 400 mg because it is easier to give her 400 mg in one tablet than 3 1/2 giant chewables. We see no ill effects from a slightly higher dose, but we notice very quickly if her dose is too low.

Kids with 4q deletions are often missing one of two genes which help the body make its own CoQ10. This may or may not cause a frank deficiency in the blood, but it seems to impact muscles, nerves and brain tissue disproportionately. This directly helps correct any deficiency, and increases the amount available as an antioxidant, which can be beneficial even for kids who are not missing one of the genes.

R-lipoic Acid

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So, many people have heard of Alpha Lipoic acid, which is a racemic compound of both the S and R isomers of lipoic acid. The R one is the one the body uses. The S one is at best useless and at worse actually gets in the way of the body using R-lipoic acid. A typical dose of ALA might be 600-1200 mg.

For kids with CoQ10 issues, R-lipoic acid helps the body use CoQ10 more efficiently to make energy, which is EXACTLY what Shiny needed. It also protects cells from damage and helps the body recycle antioxidants. Win win win win.

But straight up R-lipoic acid is VERY eager to bond with other molecules. And it is a narcissist. It LOVES itself. In liquids, R-lipoic acid may readily gloop onto itself into long polymer strands, which the body can’t use very well.  So we got some results giving Shiny 300 mg ground up in milk, but they took a couple days to see.

R-lipoic acid can be stabilized with a salt that makes it more water soluble and less likely to “gloop”. K-rala  stands for potassium (K)-R-alpha lipoic acid. The first brand we bought worked pretty well at doses of 100 mg, but we started increasing those doses and the company was bought out by Vitacost, and the quality went downhill… probably due to a fraudulent supplier, but the stuff stopped doing ANYTHING. I did some reading and decided to try the Geronova brand shown above. We gave Shiny 6 drops (20 drops is 100 mg, so this was less than 40 mg, after she’d been on 300) because the company said it was often much more effective at much lower doses due to the ready bioavailability.

They were not kidding. 5 minutes later, she started chattering. It wasn’t super coherent, but she was MAKING NOISE ON PURPOSE and it had been a long, quiet summer, punctuated mostly by her tears of frustration. And she was CHATTERING. Talking constantly. For an hour. Like every word she’d tried to say burbled up at once.

She’s now taking 12 drops per day, at about 70 pounds, and we’ve gone from talking about getting her to cooperate with sitting in a chair at school to talking about them teaching her actual subjects. (She’s in a life skills classroom, but is incredibly interested in science and the natural world.) Use this brand. Don’t bother with anything else ever. Not ALA, not RLA, use the Geronova K-rala if you need anything having to do with Alpha Lipoic Acid.

 

Melatonin

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So this we buy at Trader Joe’s because it’s $3.99 per bottle there, but even at twice the price it’s a good deal. Most people who need melatonin can get by with 1/2 tablet, which means 200 doses. That’s 6 months for $4, even at twice that it’s a bargain.

More is not better for melatonin. This stuff works, and works well, at some of the lowest doses available on the market. It’s chewable, and citrate free. I don’t advocate melatonin for most typically developing kids, but throw in a chromosome disorder, metabolic disorder, autism, what have you, and the stuff is a godsend.

 

Fish oil
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Shiny takes one of these every night. It really seems to help with behavior and frustration levels. The dose is not high, but the price is, but this works and she tolerates it, and that’s enough for me.

Methyl Folate

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Methylated B-vitamins may be absorbed more readily, and we want things to be as absorbable as possible. This is a tiny lactose tablet that dissolves fast under the tongue. She tolerates it very well. B-vitamins can help the R-lipoic acid and CoQ10 work better.  When we added this and other B-vitamins, Shiny’s energy levels picked up even more than with the other supplements.

B-12, Methylcobalamin

b-12

 

Another sublingual, very few ingredients, rapidly absorbed. B-12 can help energy levels, and seems to.

I don’t worry about higher dosing on the b-vitamins as any excess she’ll pee out.

Vitamin D, because Oregon

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This has zero taste and she tolerates a drop on food. The drops come out slow but zero taste and tolerates well makes me not care. One bottle is a year’s supply for one kid. Everyone in Oregon gets D deficient if they don’t supplement, so this would be on the list even if she didn’t have a deletion.

 

 

 

 

Generation WiFi

I’d call this kids born in the 20 years following 9/11

Currently ranging from 0-15 years old, these kids have an unprecedented access to technology even across a wide variety of demographics, wireless, cordless and intuitive. Many of them are competent at navigating a tablet and smart phone from infancy, and they have never lived in a world with the twin towers. Their first awareness of politics probably has to do with Obama on some level or another. Most of them will come of age in a world where gay marriage and legal marijuana are seen as inevitable, and they are the first generation to grow up with a significant cohort of kids who are not in the gender binary and also not in the closet about it. Kids who have literally never been in the closet about it. Sexual orientation is not particularly controversial for them, and by the time they hit college, almost every school out there will have clear consent policies. Their “Berlin Wall” is more likely to be universal health care (should we be so lucky) and the breaking of the big banks.

Parents as researchers

In response to this article because I get Shiny’s story out when I can in hopes that it will give other parents the oomph to look past what they’re told:  https://www.propublica.org/article/muscular-dystrophy-patient-olympic-medalist-same-genetic-mutation

I am the mother of a child with a rare chromosome deletion. Watching her as a baby, I would see her energy run out like a dying flashlight battery, watch her “turn off” and stop playing, watch her go quiet and silent as she waited for her energy to pick back up enough to play again. Then she would, like a flashlight turned off and on again, have another burst of energy, play for 20 minutes, then stop.

I said, “Something is up with this child’s mitochondria.”

She had, at that point, demonstrated a consistent reaction to too much citrate or citric acid in her diet, or when I was breastfeeding, mine. I took to googling now and then phrases connected to her condition. Citric acid. 4q21. That led me to learning about the Kreb cycle (also called the citric acid cycle), which helps the mitochondria do what they do to help the body produce energy from the raw materials it takes in.

This lead me to a seemingly random article on Coenzyme Q10 deficiency. Reading the symptoms, all more severe than those of my tiny daughter, I started to get goosebumps. At that point I think I knew two or three other families whose children were affected by the same mutation in the same area, and I knew their children’s symptoms. Every symptom showed up in some degree in our girls. Where full CoQ10 deficiency would give full on seizures, our little girls might have absence spells where they weren’t quite fully seized but weren’t fully functional either. (We now call them brown-outs.)   Language issues were rife (one of the dominant features of 4q21 deletions at that time was a near universal lack of expressive language). Kidney issues showed up in some of our girls, not as severe as the article described. The lack of energy was pronounced. When I got to the part about the genetics, I said, “I know where that gene is…” and sure enough, it was at 4q21. A recessive mutation would produce a marked deficiency of CoQ10 because a precursor would not be made. Our girls’ symptoms seemed remarkably consistent with a “half strength” issue… our kids had one working gene, which seemed like it should be enough if the disorder was truly recessive, but clearly it was not, and clearly something was missing.

It was when I got to the section marked “Treatment” (there was a section on treatment!) I started shaking and had to wake my husband to tell him to stop me from robbing a health food store. Over the counter CoQ10 resulted in a near complete reversal of symptoms, within a month. I immediately sent a message to the researchers listed in the paper, and had an answer back by morning. “Little to no risk in trying CoQ10,” they said. “Here’s the dosage we use for people with two copies of the mutation.”

“Maybe she only needs half the dose?” I wrote back, “Given that she probably has one healthy gene?”

I received the electronic equivalent of a shrug back, and put her on the full dose that day while arranging for some testing. She was almost two. I knew that kids who didn’t get solid language skills before two often never did, and I felt an urgency because of that.

Three days later, she picked up a new word, for the first time in a year, she didn’t lose an existing word at the same time. (This, a child who had said “Mama” at 5 months old, consistently, for months, one of the only sounds she made, but who had lost that word for months when another word took its place.) New words followed in a tumble. Her articulation was terrible but clearly her brain was finally managing to produce language in a way it had not been.

She’s now on several supplements, all aimed at helping her body use CoQ10 better. Each addition of the right stuff improves an area that has languished. Some things don’t help, we don’t keep those. The true test is that sometimes we discontinue something, and if skills go with it, we know we’re on to something important.

When she grows, we have to increase the dose or her symptoms start creeping back. The dose that makes her symptoms disappear is almost exactly half the dose she would require if she had two mutated genes rather than one functional gene. Our best guess is that there are other genes in the area that work in concert, and that a simple mutation of one gene does not produce the disastrous effects that missing the whole segment does.

More importantly, other children with similar deletions have tried similar treatments and seen similar improvements. We’ll never have a large enough sample size for a gold standard study, but the risks are low for the supplements we use, and the rewards, thus far, for many families, have been life changing.

We have had many doctors pooh pooh the idea, including one who said, “Mitochondrial ailments are very rare. It would be extremely unlikely for her to have two extraordinarily rare conditions. Missing one gene rarely produces effects with things like this.”

I had to laugh. When a family has already been struck by lightening, telling them they’re not likely to be struck again, despite having found a tall metal object in the middle of the living area, isn’t very useful, especially when the burn marks all look exactly the same.

Interestingly, while my husband and I do not share my daughter’s deletion, his mother was diagnosed with Lewy Body Dementia. Which may have a gene at 4q21. I have no idea what that means for my husband, if anything, or why our family would be struck by such apparently different lightening in such an identical position.

I’m 43 years old and may well be going back to school soon in order to learn molecular genetics, because there is so much I need to learn to even read the papers that might answer my questions. To gain access to testing equipment I can’t persuade a doctor to use to satisfy curiosity. To contact experts who might take a student seriously when they brush off a parent.

In the mean time my child is now almost 11, and despite the fact we were told she would likely never have more than a few words… she has more than 1000 spoken and signed words that she can use, can read (taught herself to read silently, we discovered it by accident). She sings. She makes puns. She has a robust and precocious sense of sarcasm.  She is not “healed”. She is not “cured”. She is who she is, but with every supplement that we find that works, things get a little easier for her, a little less frustrating. We were told that 70% of children died before age 2 with her condition. Then they said 20% by age 5. That there might be a high risk of death before 20. Now? No one is making predictions anymore. We’re in uncharted territory.

The single best resource we’ve had? Each other. Other parents with children with similar deletions. Even some parents who also have deletions in similar areas. We share information. We talk about what works. We talk about who to talk to. We keep each other going when doctors dismiss us or simply don’t even bother to try to understand.

Gandalf for President

I was sort of absently ruminating about how a guy who bears more than a passing resemblance to my grandfather is managing to fire people up so much. Them I realized.

He’s filling the same ecological niche as Gandalf, Merlin, and Dumbledore.

He’s spent every damn Republican majority at the gates, staff in hand, shouting, “You shall not pass!”

Bernie Sanders *is* Gandalf. No wonder we love him.

So I dusted off my Photoshop skills to do this:
Berndalf

This lead to the following…

I printed out a copy to show to my husband, who was having his weekend morning bath in the deep tub.

He was appropriately amused, but asked that I leave the printed copy “over there” so it wouldn’t get wet.

Over there happened to be on the shelf over the toilet.

I said, “‘You shall not pass’ isn’t really the sentiment I want hanging over my toilet. Besides, think about the hashtag… #feelthebern…”

I don’t know that I’ve ever seen my husband laugh that hard at six in the morning.

Getting our house in order: the false competition between the homeless and the refugees.

I’m seeing a whole lotta nonsense out there about how it is morally reprehensible to go offering help to refugees when we have so many homeless. Leave aside that the people bitching the loudest are also the same people who tell us not to give to the poor because it “enables them” to buy booze or whatever they deem unworthy of the “lower classes”. Also probably the same people trying to cut food stamps and whatnot. Let’s just say the credibility of people who say, “but but but HOMELESS VETS” or “HUNGRY CHILDREN” is not high with me because I suspect they care very little for either, truly.

The fact of the matter is that if we got our shit together and did the things that science and research and public policy data say are the most effective at caring for people, we could actually solve a whole bunch of problems and spend less money than we spend now.

I’m not exaggerating. I’m not making shit up here. This is well supported by data. (more…)

A TV post almost entirely devoid of actual content

So, fall TV stuff… what have you been enjoying?

Things I’m still watching:

Quantico: It has the CW pretty people problem but once I get over that, the underlying story is interesting enough.

Heroes Reborn: I am unapologetically enjoying this. Both in spite of and because of Zach Levy.

Blindspot: I’m a sucker for a good partnership, mystery, and shows involving the FBI. Suffers from plausibility issues, but if I couldn’t look past those, I wouldn’t have fanned 90% of the shows I’ve obsessed over.

Minority Report: I’m really getting to like the people in this, and the show as a whole is better than the first couple episodes taken alone. Plus, Dash is just adorable. I want to pinch his cheeks.

Stitchers: Ridiculous, ridiculous, ridiculove it. I think I kind of apologetically love this one, as I kept watching it trying to figure out what was annoying me so much about it when I suddenly realized that I adored a couple of the characters. It’s not the strongest thing out there, but it’s campy and cute once you get past the initial self-conscious tropes-and-lampshades game it plays, especially about women in tech. Plus, I’m ridiculously fond of Allison Scagliotti as an actress. Technically summer TV that I didn’t find until now.

Ongoing shows:
Grimm: I… they ripped our hearts out and then…. were too busy to let us recover. Which creates so much empathy. And yeah. If you haven’t already been watching Grimm, you really should start at the beginning. It’s cheesy and campy and very, very Portland, and has some amazing characters. Were…everything of Portland. Funny and tragic and monsters and mayhem and our chosen hero and really ordinary folk who just happen to also be beavers. Because Portland. Lovely complex characters of a wide variety of people and an undercurrent of “looking past stereotypes” that is timely and a useful metaphor. If for nothing else, watch it for Monroe.

Sleepy Hollow; This is new to me and I’m not past the first season yet, but I’m *really* enjoying the first season. It’s smart and funny and stars a young black police officer with a destiny, and she is partnered with, well, Ichabod Crane, returned from the dead. Don’t tell me about how I won’t like it later, right now I’m enjoying it.

Bones: Getting long in the tooth but I’m not sure I’d say the quality has declined, because the places where it doesn’t “flow” for me are the places where it has literally never flowed for me. I have a blast watching this ensemble tell their stories, in spite of, not because of, the gross-out.

Castle: Sigh. It irritates me when a show that made me love it for its intelligent characters and their relationship makes major plot points happen because the characters are being absolute dingbats. But that’s not actually out of character in this show. It’s has good moments this season and a couple of episodes I enjoyed the crap out of, but adding artificial tension to the ‘ship for spurious reasons feels like they’re more afraid of the ‘ship than any of them have ever admitted. So unnecessary. Will I stop watching? No. Will I keep being annoyed by this? Probably for a while.

Agents of SHIELD: Some of this season I have found profoundly compelling. Simmons’ story… my god. Daisy is less annoying than she used to be. I don’t watch this particularly critically because critical watching of Marvel Universe stuff sucks the joy out of it when it is good and doesn’t really enhance the rough bits.

Under the Dome: Managed to lose my attention, as it does. I’ll probably pick it back up. “Between” bore a close relationship to it and i don’t remember what made me stop watching that one except that they finally explained the WHY and it was so asinine that I just turned it off forever. But Under the Dome is a reasonable diversion, if weirdly structured and contrived. The farther they get into explaining everything, the less impressed I am.

NCIS: Y’know, this could have ended a couple years ago and everyone would have said it had had a nice long run. They’re still managing to tell interesting stories, but Pauley Perrette is 46 freakin’ years old and her character has not changed markedly in any way shape or form in 13 years. If the show goes on another 4 years, she’s going to be 50, playing, in essence, a teenager. I wish they’d let Abby grow up. They let Tony develop. They let Tim develop, They even gave Gibbs a makeover. Leaving Abby where she is is just lazy.

Doctor Who: Last season was excrable. This one I’ve connected with more times, but I’m still not THERE. I’m two episodes behind I think?

Things I watch when they land on Netflix:
The 100: A CW show, this looks a lot like a lot of CW shows, but the actual story is interesting to me.

Daredevil: Yes. Liked.
Sense8. My god.
The Fall: Gillian Anderson is a godess. We are not worthy.
Things I stopped watching that Huluflix Prime keeps trying to shove in my direction: Supernatural (2 seasons ago? I think?) Arrow. Gotham (Too depressing, and written in an unpleasant box). Once Upon a Time (Because Elsa. I just couldn’t.) I got 5 minutes into the Muppets and couldn’t continue. Resurrection (Might pick this one back up again but have a hard time caring). Haven: First four seasons I loved. 5th season lost me in short order.

Things I’m waiting for eagerly:
Jessica Jones
Next season of Continuum
the X-files reboot even though it will probably disappoint me. What am I saying. It’s Gillian Anderson. Who has an amazing ability to make Chris Carter’s nonsense addictive and compelling.

And something Netflix is making that I don’t even know exists yet because clearly they have my number. Looking at my history, and knowing how netflix does things, it will be a science fiction police procedural with a horror twist starring Gillian Anderson and Whoopi Goldberg as lesbian lovers living on a space station and solving crimes by day with the help of a squad of intrepid super heroes.

Today’s visit

Today, the President of the United States flew into the city I call home, and then took a helicopter to the place I’m from. One of the places. I often say I spent my childhood in Michigan and grew up in Roseburg, as the line between them fell exactly at the halfway point between birth and adulthood.

I saw pictures people posted from the roadsides in Roseburg. It was a beautiful day. I remember days like that, growing up. The sky covered with painted clouds, the ground green, plenty of sun, but not blinding. Days like that, the clouds form a roof full of skylights, high over the mountains and hills that press in close and largely untamed against the lived-in places in the valleys.

Roseburg is resplendent with natural beauty, some of the cleanest air I’ve ever breathed and I remember riding horses over wet earth and breathing deep and having no idea whatsoever how blessed I was.

I think a lot about what President Obama might have thought, looking at that place I’m from. People lined the streets to show support for families grieving an unthinkable loss, to protect them from any who might come and make hay of their tragedy. School spirit was huge in Roseburg, even I learned enough about football to sit in the stands and recognize a good play when I saw it. Community looms large and presses close like the mountains.

But I remember when we first moved to Roseburg, asking my father where all the black people were. And learning about the hate that had colored the state’s formative years. They’ll welcome you with open arms if you are Christian enough. They’ll welcome you with open arms if you’re white enough. Well, I was kind of too white and not white enough all at the same time. “Did your people kill Jesus?” someone asked, assuming that my Jewish father and my Jewish last name must indicate that I was also Jewish, even though I knew my whole life that Judaism passed through the mother and I never claimed more than a fondness for lox and bagels and learning.

And I wonder if the president saw those Nobama signs, the signs saying “Go back to Kenya!” and then looked up to the verdant mountains, the clean, brilliant air, the painted clouds, the strong community spirit, and then thought about the streets of Chicago where guns claim lives daily, the streets of Iraq, refugees and war zones and children drowning and starving and dying and I wonder if he wondered at the smallness of that place I’m from. You can see so clearly in that crystal air, but the mountains press so close and you can’t see very far. A double handful of people dead and the loudest ones left behind still clinging so tight to the guns that killed them… killed them with the hands of someone who could not see past the tip of his own rage and self-pity, no matter how clear the air.

I watched as the drama and trauma unfolded last week and my heart ached for the place I’d come from. I wanted to go down there, show support. be part of it again for a little while. Health issues prevented this week… but by the time they were resolved, I remembered so clearly why I’d left the clean air and the painted skies and the happy trees. Roseburg is a good place to be from, I think. Some of the best people I’ve ever known have been from there. Some still live there.

“Go home” some of the signs said. “Go away.” It didn’t surprise me at all… I left at 18 and rarely ever looked back. There’s a reason I call Eugene home, and while the air isn’t as clear, it’s a lot easier to see here.  I’m home. I’m away. And I’ll hold those who stayed in my heart, but I think I’ll do it from over here.

Why having the EDS diagnosis matters

Why does diagnosis matter?

When I was 4 years old, I got a flu that made it hurt to walk. And a couple months later it hurt to walk again and my mother told me I was making it up for the attention.

When I was 7 years old, I failed English because of instead of copying a sentence over and putting correction in the new sentence, I just put the punctuation in where it belonged on the typed sentence because writing hurt my hands. I flat out refused to do busywork because a) it was boring and unnecessary and b) it hurt.

When I was 8, my handwriting was still terrible, and handwriting hurt, so when we took a trip across country, camping, for a month, every day my mother made me practice my handwriting for half an hour or more a day. It kind of fixated my hatred of handwriting and the quality of it at about a third grade level. She was trying to help. If we’d known that the problem was underlying hand instability, maybe we could have done something to make it easier. Diagnosis matters. My son will never, ever have people accusing him of laziness

I could never run fast. I was always the slowest one. They’d tell me to run faster, and I’d twist my ankle and have to stop, and they’d say I did it to get out of running. I was labeled “lazy” and “clumsy”. I learned to fear running. This despite the fact that I loved climbing trees and swimming and was quite good at both of those things. If they’d wrapped my ankles and knees and had someone teach me how to run correctly, maybe my ankles would not have gotten so bad.

I took ballet from kindergarten through the sixth grade. My wobbly joints made it hard to do things steadily. And my mother wouldn’t let me go en pointe because i couldn’t hold my stomach flat. In retrospect, I got off easy, though I was angry about it at the time. I look at the damage dancers experience (and hypermobility is a selection criteria for top dancers) and I shudder.

We had yoga classes sometimes in school. I was “very good” at yoga. I will never do yoga again. In our family, “But have you tried yoga?” is a catchphrase we use to label assvice from clueless people about how to deal with chronic pain issues. I’m a goddamned pretzel, I don’t need more flexibility in my life.

My skin was extraordinarily sensitive from a very young age. I could not tolerate anything close to the front of my throat, it made me gag. I woudln’t let my mother zip up my coats all the way, starting from age 3, because they “glecked my neck”. Tags in clothes. Scratchy seams. Elastics. Lace. Pilly poly/cotton. Acrylic. I would have physical shuddering reactions to touching most of those things. Underwear HAD to have covered elastics. We learned to cut the edges from tags that had been melted to stop fraying. “I don’t like that, it’s itchy” probably drove Mom up the wall but she stopped trying to force me to wear things after a while. I was given a clothing budget and allowed to shop for my own clothes at a surprisingly young age because she was so over it. Don’t blame her a bit. Knowing how sensitive skin can be maddening, my kids lead a relatively cushy life in that respect.

Sudafed knocked me out and made me sleep. Scared my dad to death because I was sleeping so hard I didn’t answer the phone when he called to check on me one sick day. He came flying home from work to make sure I wasn’t dead. It’s not supposed to make people sleepy. On the other hand, drugs like Demerol and such that are supposed to make people forget about pain absolutely never worked. They would lie to me and tell me I wouldn’t remember and I totally would. I had an appendectomy at 14 and my mother had to push her way into the recovery room and snap at me to stop pulling off my dressings because I was so combative coming out from under general and had so much breakthrough pain that I was clawing the bandages off.

I never understood solarcaine, because it stopped working for me as soon as it dried. Dentists put unbelievable amounts of novocaine in and it would still wear off before they were done. They blamed it on my red hair, long after my hair went brown. They’re not wrong, but EDS also explains it. We won’t talk about how badly the epidural failed with my last baby.

After one sprain, I discovered that things felt better if I wrapped both ankles. Several people said I was attention seeking, so I stopped. I joined swim team so as never to have to deal with the track again. Still had to run during the presidential whatsis. And twisted my ankle.

In high school, it took so much effort to keep my hand stable enough to write that I could not take notes. I couldn’t listen, write and learn at the same time. Could not. People were pissed off that I would learn material without notes. I had to. Notes were too hard. I got docked in some classes for not taking them. I graduated with a 3.87. Probably would have been closer to a 3.92 if I’d been able to take notes. When I took a college class in my 30’s with a laptop, I was able to type the lecture verbatim while learning and listening. It’s hard to write if you have to fight your fingers bending backwards all the damned time. Essay tests were the actual worst. I started typing my papers on a computer before most people had access to home computers.

My handwriting is still awful. But now I use a special pen that doesn’t hurt so much, ask to type the responses to long forms, and flat out refuse to write long things and ask for someone to write for me if I can’t type out the responses.

I got pregnant when I was 20. The nausea and stretch marks were insane. My pelvic floor and belly would never be the same. My breasts headed south. People talked about “bouncing back” from having a baby”, I just found a new normal, one in which I had giant breasts and stretch marks over 90% of my body. I almost passed out a number of times… pregnancy makes you more stretchy, and while I don’t always have POTS, I surely did when I was pregnant. Ended up having unnecessary tests done because we were worried it was another embolism. Nope. Just my flaky body being flaky again.

I developed a series of food allergies. So did my kid. The list of things I’m allergic to is exhausting, and i often forget things until they’re in front of me.

At 23, the world wide web happened and a few years after that I met someone online with severe EDS. Some of it rang bells but I’d never knowingly dislocated things, so I shrugged it off because my skin wasn’t stretchy “enough” and my joints didn’t dislocate. I wasn’t as bad off as her so that couldn’t be it.

My hair started falling out in my mid twenties and I put on a lot of weight. It would take another 8 years to get a hashimotos diagnosis. People said “diet and exercise.” Every time I exercised, 2 weeks in I would get sick or twist my ankle. I tried yoga.

By the time I was 32, I did manage to get close to my pre-baby weight and kept it off until another pregnancy. And a miscarriage and another pregnancy after that happened and my thyroid failed and I put on 80 pounds in about 5 years. The pregnancy was particularly damaging to my pelvis as my child had craniosynostosis and macrocephaly and I pushed her out vaginally and destroyed my pelvic stability. I didn’t sleep for 2 months after she was born, struggling with feeding issues. She was 4 1/2-5 months old before walking didn’t hurt.

Parenting a special needs child and caretaking a mother in law with dementia crashed my adrenals when I went on thyroid meds. My thyroid was only diagnosed because it was one of the things they tested for when I said, “I keep falling” after it took six months to recover from a sprain only for me to fall again.

It was a very difficult time. I was diagnosed with IBS and fibro and sleep apnea and sleep timing disorder and had another pulmonary embolism (I have a clotting disorder as the cherry on top). I went from doing 14 hours a day of hard labor remodeling our house to barely able to function. And yet people sighed heavily when I said I needed help, because I must be exaggerating. Or because they’d been helping so much they were exhausted.

I was put into physical therapy to help me get back some function. That was helpful. I had another baby. That wasn’t. By that point, I figured out that pregnancy was destructive and I had my uterus out when he was 11 1/2 months old. While they did it, they repaired the cystocele and rectocele and open tear that was left from my first baby. The repairs failed within a year. I won’t have them redone.

Someone asked, “Have you considered your problem might be psychological?”

I didn’t speak to him again for a long time. We will never be as good friends as we used to be.

More falls, more pain, more PT, another embolism. I kept thinking, “How can it be possible for one person to have this many diagnoses?”

I began to wonder if maybe I was a hypochondriac. Then I started reading about EDS, and the lightbulb went off. And suddenly it all made sense, and I stopped feeling so crazy and started feeling really angry at the people who pushed me and bullied me and didn’t listen and made me feel like asking for help was a failure and that I didn’t deserve help.

I didn’t deserve to be treated that way. I would be less disabled now if I’d had more support then. I’d have done better in school from an earlier age. I probably wouldn’t have crashed and burned in college so hard. Maybe other things would have been harder or worse knowing, but not knowing did actually create problems. I don’t actually blame people for not knowing, they just didn’t know. They couldn’t know. But part of me wishes I could go back in time and say, “Knock it off. This is why.”

Here’s the thing. I get hurt when I push myself. I pushed myself hard for many years.   At heart, who I am, is someone who wants to help people. I want to fix things. I want to make things better. I want to learn. I want to do. I want to live.

I hate bedrest. I intensely dislike going to the doctor. It takes an enormous amount for me to go through the process of making an appointment, and going to the ER is literally the last thing I want to except for dying. So I don’t go unless I’m scared to death. I don’t scare easy.

I put up with things for YEARS rather than ask for help with them because I hate asking for help. I hate being needy. I hate not being the person who can make it better. I don’t like saying no.

When I can, I do. Sometimes I do even when I shouldn’t. And the price is high. One day of overdoing can cost me a week of function. One injury or illness can cost me months of muscle mass. If I seem wary, it’s because of experience, not timidity.

So what do I deserve? I deserve what we all deserve. We deserve doctors who listen and are curious enough to figure out underlying causes. We deserve to be treated with respect and have our conditions treated and pain relieved. We deserve a good quality of life. We deserve supports to make the most out of what we have.

We don’t deserve to be labeled “Drug seekers.”
We don’t deserve to be labeled “Hypochondriacs.”
We’re not lazy.
We’re not attention seeking.
We’re probably a hell of a lot more tired of the laundry list of diagnoses than anyone else in our lives.
And it is reasonable for us to want to understand our bodies and why they do the things they do.

A diagnosis, while stressful, can remove huge stressors, especially that internal voice that says, “Am I crazy? Am I making it up? Are they right about me?”

It can be the difference between finding the right help and being more damaged when we “try yoga.”

Pondering identity: Race, class and gender

It is, if not amusing, certainly bemusing to me that the older I get, the less clarity I have about my identity. When I was 20, I attended, very briefly, Evergreen State College. And the one class I enrolled in was titled, “Race, Class and Gender in Comparative Perspective.” The subject matter was a comparison between modern-day India and the antebellum South in the the United States. I didn’t get very far in the class because I got knocked up, and got my own personal sojourn through the roles of “young, single welfare mother” and “college dropout.” At the time I identified as bisexual, female, white, ethnically Jewish, polyamorous, democrat, feminist, and liberal. I never quite figured out the class thing because I had professional parents, who didn’t have much money while I was growing up, and I spend a couple years on welfare… so I had a middle class upbringing with working class resources. I dropped out of college mostly because I didn’t want to waste my money while I wasn’t able to focus. I didn’t go back yet because life is complicated. 22 years and I still say “yet”.

I’m still a liberal, feminist democrat. And I’m still incredibly pale, and I still like lox. I’m still the child of a white, Anglo Saxon protestant mom whose family roots go back to the Mayflower and a Jewish dad whose parents’ families fled Russia and Poland in the early 1920s, long before Hitler had power in the area. Because lots of  people were assholes to the Jews back then.

In high school, during my junior year, I wrote a research paper about the history of Judaism. People have been kicking the Jews around for a hell of a long time. There was a lot of material. On the one hand, I felt it very personally, that these people like me had been so abused for so long. And on the other hand, Judaism doesn’t claim me, nor do I claim it as more than a cultural factor, because my mother is not Jewish. I grew up celebrating Christmas and Easter with rare forays that felt like tourism to seders and Hanukkah parties.

Recently someone said to me, “How do you dance the hora?”

I looked at him and raised an eyebrow. “And why do you think I know?” I asked.

“Well, your last name….”

Clearly someone who does not understand assimilation. (Side note: I actually have danced the Hora, many times, but I wouldn’t be able to right now and I only “know how” when I’m in a big circle of people dancing the hora because it’s that kind of dance.) It greatly reminded me of college, when a girl from Texas turned to a roommate and drawled, “You’re from California, what’s IN tofu?”

My roommate responded much as I did. She put on her best valley girl accent and said, “Like, I don’t know.”

But people have treated me different for “being Jewish”, no matter how little I look it or the fact that I don’t practice Judaism and never really have. I’m a freckled redhead with green eyes and pale skin, and really all I get from that side of the family is a lot of curl in my hair, full lips and a really flat butt. And my last name. It’s the name that makes people jump to conclusions, like, “Your people killed Jesus,” and “Do you sacrifice babies?” In contrast, assuming I know the Hora is pretty mild.

Growing up I went from being the weird white kid at the mostly black school (the school, now, is 97% black, in the middle of Detroit) to being the weird Jewish kid in a relentlessly white, sorta rural town in southern Oregon.

When people started saying, “White people don’t get it” I always felt kind of weird because growing up with my best friends being Black, and hearing the kids at school talk about their fears, and then ending up being identified without my taking the identity with a people who have been systematically oppressed for millennia, who have been the victims of genocide and segregation, who have been vilified, caricatured, rejected, and feared… it’s hard to imagine that there aren’t kind of a lot of commonalities. And yet… do we ever really understand where other people are coming from? If someone asks me if I’m Jewish, I can say “no”, honestly,  and they shrug and move on. Most of the assumptions, even the negative ones, that people make about Jews tend to be fear of financial or political power (accurate or not) rather than assumption of inadequacy or violence, unless we’re talking sports. It’s a different thing.  Just different.

So I’m sort of batting around thoughts about cultural appropriation. Intellectually I understand the concerns, but I also come from an incredibly mixed background of religion, ethnicity and place, and grew up with people talking about the melting pot as a good thing. I grew up liking moccasins and Baja hoodies and matzo balls, was baptized in the Episcopalian church and ultimately ended up as a lapsed Unitarian Universalist. And if you ever wanted a religion based on cultural appropriation…
As a teenager my go-to-sleep music was this:

Which is a Punjabi Buddhist mantra (I think) set to Celtic harp music.

Even baby carriers, everything comes from somewhere. Some of them come from multiple places. I like talking about where they come from but mostly I just want people to be comfortable wearing their babies, so sometimes the fact that things like the ergo are really Westernized adaptations of a number of Asian baby carriers gets lost in the shuffle, but hey, there were similar things in Sweden and Africa and yeah, it becomes challenging to know how much to worry about the cultural appropriation side of things.

We’re well off now. Secure, not “wealthy”, almost “comfortable”. On paper we look relatively wealthy, but mostly it’s because we’re planning for my husband to retire early. Like just over a year from now. So it’s got to last a while. But very, very far from where I was when I was 22, on welfare. Or worse, before welfare, when I had literally zero dollars and got by on foodstamps. Still have to think about money but surprises only upset us, they don’t break us anymore. And I grew up not able to afford college. I grew up in working class neighborhoods. But I grew up with parents who were white collar professionals. I had more in common with the upper class kids except the inconvenience of not being able to buy trendy shit. My parents gave me lessons and adventures and put a priority on my education and they were married and still are.

I talk about privilege a lot, and I’m working through most of this stuff with much the same filter. I don’t have a crystallized, formalized opinion yet.

Last night I was watching Honest Trailers, and was laughing my ass off. What they had to say about Skyrim and Harry Potter were hilarious. And then we got to the Avengers, and it was awesome, right up to the point where they said, “This movie will make your inner 8 year old stand up and squeal, unless you’re dead, or a girl.”

And my god. I just shut it down. Closed the window and stopped watching, though there was plenty more in the rabbit hole. If they’d said pretty much any other label in place of “girl” it would have been immediately obviously offensive and I don’t think they’d have said it. But “like a girl” and “girls don’t like these things” and “fake geek girl” have been too prevalent lately to let this one go.

In elementary school, I won the competition to be on the Olympics of the Mind robot building team for our school district-wide TAG class. Won it. And when the team assembled, the boys put their heads together and told me and the other girl who’d made the team, “You guys can do the costumes. We’re building the robot.”

Their robot sucked and failed to work.

In the same class, we were learning to program computers. And when it was my turn, every time the teacher would give me the same program I’d already done, and then turn to the boys and help them do more complicated things. Not because I lacked aptitude but because clearly teaching me wasn’t worth the effort because I couldn’t possibly be interested in that. I was an adult before I taught myself to code at all. There was just no support for it.

In high school, despite having some of the highest scores in the math program, I was not invited to be on the math team. It was like I was invisible.

I grew up hearing Free to Be You and Me tell me that the only significant difference between Mommies and Daddies is the biological act of parenting. I grew up with a dad who taught me to cook and a mom who went to school and had a law office. With a dad who did much of the outside work and a mom who sewed. With a dad who wasn’t afraid to cry and a mom who wasn’t going to back down from a fight for justice. And it wasn’t until college that I learned this was kinda weird.  And it wasn’t until the past few years that I really understood how deep gender discrimination goes. That having a female name makes it harder to get published. Or hired for many jobs. Or any of a number of other biases that in retrospect should have been obvious and I thought were just me. I was “bossy” and “bitchy” and “pushy”.  I talked out of turn and raised my hand too much. I was fired from a job supposedly for breaking the rules (I didn’t) because one of the bosses didn’t like how her husband was looking at me. Once, an insurance company refused to pay what a totaled stolen and recovered vehicle was worth until my father came on the line and threatened to pull his accounts. I was 24.

And I never fit. Have literally never worn high heels. Too tall. My hands don’t fit in women’s gloves. They don’t make most women’s shoes in my size. Hardly anything is made to fit me. I’m thankful to walmart for actually acknowledging the existence of large women, as it means that I can at least wear colorful sweats and t-shirts without shopping from big and tall men’s stores (which I do anyway.)

I feel like when society defines what it means to be a woman most of it isn’t me. But I don’t feel like I’m not a woman. Except I don’t want people judging me on those terms, so I’m pretty likely to use a gender neutral pseudonym when I publish. I hate that it comes down to that. And  my eldest kid is nonbinary. In their words, “I don’t mind being a sister and a daughter, but don’t call me a girl like that’s all I am.” I get that completely.

I don’t have a uterus anymore. And now that Miles is on the very tail end of weaning, I probably will stop having breasts in the next few years. I’m letting go of the things that ever made me connect to the idea of “womanhood” as separate from “personhood”.

I don’t have any answers, but I’m reading articles right now about whether or not Jewish people are white, and sort of laughing exasperated inside because my god, I’ve never felt completely white or completely Jewish or really completely anything because are things ever that simple? I’m not NOT those things, but they aren’t all I am either.

When I look in the mirror and think about identity, mostly I think, “I’m me.”

Not entirely straight, not entirely bi, functionally monogamous but I’ve been polyamorous in the past, not sure I could deal with it now, so does it matter? I don’t know. Not Jewish, not not-Jewish, and the Jewish identity matters more than being “white” as an identity because the tribulations of my great grandparents are much closer than the struggles of my 8-times grandfathers and grandmothers. Woman, female, not feminine, not masculine either, hell, even on the Meyers-Briggs my answers hover in the indeterminate middle. Mostly I’m not binary, and don’t like dichotomies. And injustice makes me angry and sad. And I want people to be safe, secure, happy and loved.

I don’t think there’s a box I fit in. Or maybe that is the box. That I don’t fit.

Maybe that’s what it’s about. Sitting with the uncertainty and accepting that as reality.

Explaining gender spectrum to a 3 year old

So, with four nonbinary young adults in my immediate circle, Miles has been a bit… delayed in his inquiries about gender. His use of pronouns tends to be kind of vague and all over the place, and I haven’t been correcting him much because he wasn’t quite to where he could really digest the fairly complex answer to the question, “What does it mean to be a boy or a girl.”

Well, today he asked specifically if his cousin was a girl.

“Yes,” I answered. “She is.”

“I’m a boy,” he said.

“Yes, you are. Do you know what your daddy is?”

“Is she a boy?” he asked.

“He’s a boy. And I’m a girl, kind of.”

“Is Kailea a boy?” he asked.

“No,” I answered.

“Is Kailea a girl?” he asked.

“Not exactly,” I said.

He thought about that for a moment. “Is Kailea a KIDDO?”

I blinked, and blinked again, and said, “Sure!”

 

Idle speculation

So, some chain of facebook/surfing an article popped up about how metabolism, not upright stance and pelvis size limits the length of gestation in humans. That our infants are gestated longer but come out seeming more immature compared to other primates.

So it occurred to me, if our babies are born more dependent and less “developed” despite gestating longer than other primates, what if that’s because there’s an actual advantage to a baby coming out not programmed to do much more than latch on, eat, and make people fall madly in love with it?

Other primates don’t change climates very often, as far as I know. They don’t have to adapt quickly to different biomes or environments, right? So it is to their advantage to come out as adapted as possible to the environment that they are going to live in. And other mammals don’t tend to move as much either. Birds tend to return to the same nesting grounds damn near forever, even if they migrate around the world.

But we go everywhere. And our saving grace, the thing that makes us thrive, is our adaptability. So we gestate long, mostly dreaming, are born with an incredible number of neurons connected, and we start to prune them to adapt to our environments as soon as we are born. It wouldn’t be helpful if we were born more advanced, doing more things… who needs to be running after a toddler moments after giving birth? Better have them small and portable. Some of them will spend a lot of time in a container, some of them will spend a lot of time in arms or in carrier, but they’ll be more adaptable forever if each child adapts to the environment of the parents, and the species survives because it survives everywhere.

And babies adapt to their environments starting in utero, we know that. The food the mother eats, how much of it she gets, the soundscape she moves through, the way her body moves, period… we know that uterine environment matters and it matters for generations, but each generation can have a profound shift to the next generation simply by doing things differently.

If we were more hard wired, gestated longer, gestated shorter, had more mature or less mature young, it wouldn’t all work nearly so well, as demonstrated by the fact that it doesn’t.

When a child doesn’t lose those infantile reflexes, it usually means there is some kind of malfunction in the brain. Might be a little one, might be huge, but it means something isn’t working as it should.

Premature babies, if they manage to avoid the pitfalls of subpar system functioning due to prematurity, tend to catch up to their actual ages over time, vs. their gestational ages. There are both disadvantages and advantages to a child to come out and experience the world early, so long as that world is not one which causes pruning in inopportune ways. (Kangaroo care’s successes tend to support that supposition…)

It is humanity’s flexibility and variety that helps it survive, no? Uniformity would have doomed us eons ago. Or maybe it did, and we changed because of it.

I’ll go with you

A few days ago, one of our co-op members posted about http://www.illgowithyou.org/ .

This is a project formed in response to the transgender protest #wejustneedtopee. See http://www.advocate.com/politics/transgender/2015/03/14/trans-folks-respond-bathroom-bills-wejustneedtopee-selfies for an excellent article about the issues faced by trans folk in bathrooms. To quote one young friend of mine, “Not having a safe bathroom made high school a misery.” A mom friend went to court to take the school district to task when her daughter was excluded from using “girl” bathrooms on the grounds that a six year old child is somehow a hazard to other children simply by dint of being a little different between the legs.

But it goes way beyond bathrooms. Transgender people are often subjected to relentless, devastating discrimination and violence. The isolation and feelings of alienation are so profound that more than 40% of trans folk have attempted suicide. Not considered, ATTEMPTED. And many succeed. How many people have we lost?

I posted about the buttons. It is a tiny thing, but it is a thing. And the co-op is buying them in a way that for every 100 we buy, we’ll donate 400 to local groups. We’ve already committed to ordering 200 paid-for buttons, which means at least 800 buttons to donate. My goal is that we get so many people wearing them that a trans person will walk into a public space and see so many buttons that they will feel welcome, reassured, and not even NEED to ask, in order to feel safe.

And someone in my extended family said three words that broke my heart. And then fired me up.

“Don’t encourage them.”

If you are reading this, and somehow think that LGBT queer folk are somehow bad, wrong, or not to be supported, loved and made to feel safe as they walk through their everyday lives, we really need to talk.

The idea, the very notion that I should not wear and encourage others to wear a button that simply states, “I’ll go with you”, telling trans folk that they have an ally present who would be happy to make the bathroom spaces feel less scary to them, upsets me to the core. Especially since I strongly suspect said sentiment is somehow grounded in conservative christian notions of “sin”.

I don’t talk a ton about my religious beliefs which are complex, private, and not a subject I’m willing to discuss, but I will say that I was brought up from a young age learning a lot about the teachings of Jesus, and the ones that stick with me the strongest are the stories of Jesus sitting down with the people everyone else rejected, and simply being with them, talking with them, and LOVING them. Do you think that Jesus would have checked under someone’s robe to see if their garment matched their genitalia before offering them bread?

I have many, many people in my life who are trans, nonbinary, genderqueer, lesbian, gay, bisexual, poly and just plain ol’ too queer to define readily. And if you think for a second that I’m not going to stand by them and do everything I know how to do to make this world a safer, more loving place for them because you think I shouldn’t encourage them, you don’t know me at all. And if you think they are somehow unworthy of having a place in this world, undeserving of housing, employment, health care, love, and the same rights that all the so-called “normal” people get just for showing up simply because they don’t look like you want them to look or act the way you think people “should” act, you need to go back and read the teachings of Jesus a little more. Start with “love thy neighbor” and “judge not lest ye be judged”.

The main reason given by most of the gospels for the plot to get rid of Jesus was due to his constant breaking of the old ways in favor of common sense, common decency and humanity over law. They killed him for doing things differently, for throwing the religious establishment’s rules out the window because they no longer served. “The sabbath was made for man, not man made for the sabbath.”

Someone said to me today, in a comment which I deleted because I want my friends to feel safe, “Don’t encourage them.”

You know what? I will absolutely “encourage” “them”.

Because “they” are in my heart, my soul, my breath. And so, so many have been discouraged to death. Literal, actual death.

Encourage them? I want to shout to the rooftops, “You are welcome here, by my side. You are welcome here, in my heart. Tell me who you are, and I’ll do everything I can to meet you there. And if there’s somewhere you want to go, where you don’t feel safe, I’ll go with you. Because this world is better with you in it.”

Just one drop: Breastmilk for healing

So it’s one thing to hear breastfeeding moms crow about how well breastmilk worked to clear up a baby’s red eye, but another to experience squirting oneself in the eye with fresh breastmilk.

First of all, it is painless. Soothing, even, if the eye is already irritated (and if it’s not, why bother?). Breastmilk is the exact balance an eye wants, and doesn’t create any sort of “foreign body” reaction. Mechanically, it washes the eye. But it also, fresh, contains leukocytes which directly fight infection. It contains sugars and nutrients which inflamed cells can use to help repair and function instantly. And it contains stem cells, which helps it repair damage directly. It blurs the vision for a few minutes, because it is not transparent, but it clears quickly, the inflammation settles down, and the pain goes.

But that’s just the beginning. When I burned my arm badly, I annointed the burn with breastmilk. The pain fled. Healing was rapid. Scarring minimal. I love hydrocolloids for burns but I’d rather apply breastmilk. My housemate gasped when a bad, fresh grease burn vanished in minutes with a few drops of milk on it. To the point where a year or two later, when a couple injuries happened at once, plus an old skin inflammation that had been failing to heal for months… I offered to find someone to donate a small amount of fresh milk, and the offer was accepted, strange as it sounded.

But it didn’t sound strange to my community of moms… my request was answered by five volunteers within half an hour. A few hours later we had a small jar of milk fresh in hand, and shortly after that healing had already begun, wounds that had been frustratingly difficult to heal for months had started to close. “More please?” was the request the next day. And another mom offered another half ounce. Not enough to deprive a baby, but such a tiny amount of precious liquid to heal a long hurt.

A couple years ago, I foolishly tried to clean an immersion blender and nearly chopped the tip of my finger off. It was cut to the bone, white, gaping. Direct pressure and breastmilk started helping quickly. By the time the EMTs arrived, it was holding together enough that I didn’t have to go in, by their judgement. The tip of my finger was dead white, and I annointed my finger with milk along the wound, visualized blood and lymph and nerves flowing, healing, functioning. I watched the tip of my finger pink up. They say that people with fibro have more nerve connections than they should, with more connections specifically to blood vessels and that the nerves do more than they’re supposed to. In any event, if I have poor blood flow in my skin, and someone points it out (a white splotch despite massage, for example), the moment they point it out it will pink up. It causes pain, it causes fibro, it causes reynauds… but it also might just have saved my fingertip. I kept applying milk. I kept visualizing. It kept pinking up whenever I thought about it. I thought about my finger for months (couldn’t help it, the nerves felt buzzy everywhere downstream from where they’d been cut.)

Two years later, and I’m still a little buzzy but blood flow and function are perfect. Barely a scar is visible. I wonder if it is because the wound was bathed in stem cells every time I thought to put a drop on it. There was a V-shaped flap. Even that healed. There was no infection.

On my birthday in 2014, I turned 42 and my son fell against a crate and split his lip. It was bad. And bleeding. And I nursed him immediately, and by the time he stopped, the bleeding had stopped, and the wound looked ten times better than when we’d started. He has a scar there, a small one, but milk and nursing saved him a trip to Urgent Care, and healed him fast.

My mother skeptically agreed to try it with one infection, and came asking for it the next time one struck.

The magic of breastmilk is transitory. Even refrigeration can inhibit the best parts of it.

But I think about how a drop of fresh milk could make a new burn vanish (milk was applied within minutes of the grease landing on the arm), and I think about how many gallons of fresh breastmilk a breastfed baby will consume… And yeah, I’m pretty sure formula will never do that.

People ask me why I don’t call formula a second choice, but a fourth choice. And it really comes down to the fact that fresh breast milk is a magic thing. And if it’s not possible, frozen or fridged from the baby’s mama is very good. If that can’t be had, donor milk is very beneficial and has helped many, many babies. (In my community, there are babies who have only ever had breastmilk despite their mothers having had mastectomies or severe blood loss that inhibited milk production). And if those things don’t work for a family, it’s a very good thing that formula is widely available, but it’s still the fourth choice. This is NOT a slam on formula feeding. This is not a criticism of people who can’t breastfeed or don’t feel comfortable taking donor milk. It’s a reality check. The “ideal” is not always possible in parenting, but we really ought to have a realistic knowledge of what the options are before we determine what the best fit is. It would be ideal for me to take my gregarious kid to social gatherings every day. With my chronic pain and fatigue issues, that’s not happening right now. But I’m not going to pretend that our routine is my “first choice”. My first preference would be to get up cheerfully in the morning, get Shiny off to school, go do something fun and educational with Miles with other children, come home, fix a nutritious lunch, do something productive and creative, and then make a fantastic dinner. But I haven’t gotten Shiny to the bus in four months because of an injury. Other people do it. Thank god they’re there to pick up the slack.

I don’t have milk anymore. When I had the embolism last year, I went on coumadin, and my levels jumped up and down on a daily basis because my special snowflake metabolism wouldn’t know consistent liver function from a sparkly unicorn. After shooting from 1.3 to 3.6 and ending up in the ER pissing blood for no good reason whatsoever, I asked to go on Xarelto… and put Miles on short shifts at the boob because the medicine does appear get into the milk, and being orally absorbed, may cause anticoagulation in a child. Not ideal in an active toddler. I dried up quickly. He still nurses now and then, despite saying he was done every day for six days, on the seventh, he lost his shit and begged for boob and I shrugged and let him nurse for 2 minutes and he was fine. Like magic. Even without milk.

So if I was being granular about it, I’d rank my own “preference/ideal” scale for infant feeding (<6 months) thusly:
Fresh mama’s milk at the breast
Fresh mama’s milk in a bottle or SNS (note that logistically this can be the single most draining approach to new baby parenting.)
Fridged mama’s milk
Frozen mama’s milk
Fresh donor milk (assuming a safe donor, which is an assumption that should not be made casually)
Fridged donor milk
Frozen donor milk
Pasteurized donor milk (personally, I react badly to cooked milk from cows. I can drink fresh raw milk or fridged raw milk or cooked-then-cultured milk without issues. It’s an enzyme thing. So feeding babies exclusively pasteurized milk, even human milk, isn’t high on my personal list of preferences, though it may have less risk of infection, it also does much less than fresh milk to help prevent infection and illness. But compared to formula, still gold.)
Cow-milk based formula (and here I’d rather have organic)
Cow-milk based whey hydrolysate formula (i.e. Good Start)
Cow-milk based full hydrolysate hypoallergenic formula (i.e. alimentum etc.)
Soy formula
Homemade formula
Goat milk
Cow milk

When people say, “every drop is precious”… yes. Even if a mom only produces an ounce a day for her baby to drink, and the rest comes from something else, think about the magic that even that ounce can do. One drop to heal a small burn. 1/2 ounce to heal a couple of injuries and start healing on several more.

There’s a reason why it was worth it to me, when Shiny was still new, to weigh her, nurse her, weigh her, pump until I got to our “goal” and then feed that pumped milk immediately by bottle. The more of my relative-to-her normal stem cells that colonized in her gut, the better off she would be. I wish I’d bathed her in breastmilk, head to toe, though certainly I leaked enough in the early days that essentially, I did.

Entertainingly, scientists managed to create a rat forelimb using a collagen scaffold and seeded cells recently. It is remotely possible that one day we will have disembodied mammary glands that produce a reasonable facsimile of some of the biodynamic parts of breastmilk for feeding babies who can’t nurse. Add formula to the thing, have it convert that into something more alive.
And it will probably still be a distant second, third, or fourth to a mother’s own milk, to fresh milk from a donor. Because we still don’t fully understand the complexity that is human breastmilk. It’s possible we never quite will. Sometimes it seems that the more we learn, the more we learn that there is still to learn. What we know now is just one drop in the bucket.

On accepting help

We get a lot of messages in our culture about bootstraps and “making it on our own” and “being independent”.

“I never accepted handouts from anyone!”

I don’t see that as necessarily laudable. Here’s the thing. While striving to do the best you can is a good idea, the fact of the matter is that no one, not anyone, anywhere, gets to where they need or want to be without at least some support along the way. Whether it is simply being allowed in the door, or getting a job, or having enough resources to get an education or even accepting a tax credit…

I’ve been poor and I know a lot of poor families. And one of the biggest lessons of the co-op has been how much people want to help. Our produce co-op started with 30 families ordering. Our last big donation effort helped 30 families, something like six of them at the last minute. Every single week we send out multiple gifted produce boxes. I don’t want to call them charity, because while they are definitely given to people in need, they are not given in a way that isolates and separates people in need.

With our holiday boxes, often the very people getting a box will also be making something to put in them. Someone like me with more money than energy might buy a bunch of pumpkin for someone with more energy than money to make into pies for people who have neither the time nor the infrastructure to do so. One dinner was entirely cooked because the family was in a hotel.

It’s May, why am I talking about this now?

I’ve been thinking about privilege a lot, about helping and charity. I’ve also been playing a hell of a lot of Skyrim. For those who don’t know, Skyrim is a single-player video game where you basically go into a fantasy world and have adventures and work your way up from a prisoner in chains to someone who can pretty much slay anything that walks, flies or breathes, and a whole lot of things that don’t. Dragons? No problem. Like many such games, the concept of “leveling up” is there, you do things, you get experience. You do more things, you get more experience. You get enough skill points and boom, you are healthier or have more stamina or more magic to use.

Skyrim is also a game that allows people to change the game world, quite literally, with things called mods. Mods can do as little as adding an apple to a counter in an inn, to changing the entire experience of the game. Because I have old eyes and an atypical monitor-to-eye distance, I modded my game to make certain hard to see resources glow so that I notice them more easily. I also loaded a funny hideout that is basically like a medieval TARDIS. It has doors to all the possible “regular” houses available to the player within the game. And a trap door to the outside. It is huge, and it means you can basically walk across the continent by going into your basement and turning a corner.

But while that’s cool and useful for getting one places quicker than would otherwise be possible… the relevant part is that this hideout has within it a cavern. And in that cavern are a bunch of traps which can actually kill you at early levels… and about 100,000 gold. In game terms, that’s ten levels worth of college education. There’s also a pile of ingots, which can be used to make things, and the act of making things helps one level. I can get out of the initial starting condition of the game and immediately teleport to the front door of my hideout, walk into it, and the next time I see sky I’m level ten and my archery has gone from 20 to 70. This is huge in terms of boosting my ability to kill things… and killing things is part of how one gathers the resources to make things, and making things is part of how one makes money. Oh, and lest I forget, the hideout is filled with staff who basically only exist to train me. Private tutors.

It is almost exactly like having a rich but judgmental parent who pays for your college and gets you a car and then invests in your startup while introducing you to influential people. Playing without it, one may see one’s first dragon at level 3 or 4. One may get one’s ass kicked numerous times and survive only because the guards are better shots. Playing with it, dragons never have to be difficult unless you actually mod them to be more difficult, and you don’t fight your first dragon until you decide to, maybe around level 40 or so.

It’s a dandy model for privilege, the difference between having to beg, borrow and steal and join the thieves guild, and simply walking through the game at your own pace for the adventure of it. And that’s in a world that even without the mod, is LITERALLY designed around your character.

So what does that have to do with charity?

Like my character, I’ve played it both ways. Welfare, Medicaid, Section 8, WIC, basically the works, struggling to get by as a poor working mom, and then this year when for the first time we didn’t qualify for a child tax credit. Not EIC, the other one. Because we made too much money. (I wish it felt like it was that much money, apparently as your income goes up, so do the expenses, but scary big expensive things aren’t life destroying anymore, so that is an improvement.) So when I hear about someone struggling, I KNOW. I do. Either I’ve been right where they are, or I had enough family and community that it wasn’t quite that bad… and regardless, I want to make it not so bad for them.

I know I’m not alone in that. I give what I give to help others… but I also do it because it makes me happy to help. I get a real, tangible benefit from putting people in touch with what they need. Struggling with chronic pain, there’s a whole lot I want to be doing that I can’t, but by god if I know who can help and can put them in touch with someone who needs help, that makes me happy. It makes me feel useful. And I especially love doing that within the context of our local community.

We have a natural drive to want to fix things. I know I’m not the only one because hey, co-op… 30 boxes and all I did was make a Costco run… Someone says they couldn’t afford groceries when they got to the check out stand and I ACHE to have been there behind them because I could have helped. I can’t carry my own damn groceries to the car, but my god, if I could ease that burden for a young family…

On a non-monetary scale, I feel much the same about teenagers I hear about who have been alienated (thrown out) from their homes of origin because of who they are. I hear about a transgender teen being kicked out and I want to scoop them up and tell them that it is going to be okay. Gay kid kicked out for being gay? Honey, there is NOTHING wrong with you. NO THING. It isn’t your fault. Teenager kicked out for getting pregnant? If I could add a “bubble” of a new bedroom to my house for kids to stay in when they needed a place to land that accepted them for who they were, my house would be very oddly shaped indeed.

Being able to put someone in touch with resources, or get them quality food that isn’t just society’s leftovers, or just say to them, “You are not the problem. Society is fucked up, but YOU are not what is messing it up and don’t you believe anyone who ever tells you otherwise.” Those things are the things that feed my soul. They’re what remind me why I’m still here.

Most people aren’t “The Dragonborn.” Most people don’t have a rich uncle or wealthy parents footing the bill for whatever they decide they want to be. Most people fumble through until they find their way, bumble around bumping into things until things either go too wrong to fix or fall into place in a way that meets current needs and then they find a new normal.

Hell, the first three or four runthroughs I did on Skyrim? Things got so buggy and screwed up due to innate flaws in the game that I just quit the game and started a new one. The one I’m still playing? I installed user-made patches that basically FIX THE UNIVERSE so that it doesn’t crash. I *rewrote the world* in order to succeed and succeed quickly without inconvenient programming errors bogging me down.

It doesn’t work that way in life. We have to patch it on the fly. In Skyrim, sometimes it’s not player error, it’s that the underlying game is so buggy. Sometimes it’s that the computer just isn’t compatible. In life, that’s true too. I view racism and bias as an operating system failure. The deep inequities in American culture? Hardware flaws.

And as long as society pretends they aren’t there, they’re never gonna get fixed. We can’t shut down the game and rewrite the code and start over, so we have to figure out how to make our changes while everything is still moving. We have to figure out how to “wake up” the people who are operating under erroneous programming. How to fix the system that so often fails everyone in the guise of “helping”.

Things are changing. I actually have a lot of hope because a lot of things that were swept under the rug for most of my life are now BEING TALKED ABOUT. We are having a conversation about the operating system. About the hardware. About the code. And it can’t get fixed unless we look at it.

Meanwhile, back in our little corner of the world, if you get stuck and need a hand, and someone like me offers you one… know that it’s because a) we’ve been there, b) we know the operating system is buggy and c) it’s a small thing we can do to help fix the code. Reduce a little of your stress. Might not be your rich uncle, but at least you can feed your kids something good and know that it’s because we care.

I was having a bad day a while back, and a friend knew about it, and she also knew that I absolute love her homemade ketchup… and she sent a jar of it home with my produce box from the co-op. That jar of ketchup? Unasked for? A gift? I joked that it was the “ketchup of love” (and now we know why tomatoes are ‘love apples’)… but in truth every time I got it out of the fridge and used it I smiled and knew someone wanted my day to be a little better, a little brighter, and that actually made it all better. WEEKS of joy, from ketchup. And that friend is now thinking about starting a ketchup business. As well she should.

It’s not charity. Making sure that families feel supported and plugging the holes in the safety net benefits EVERYONE. I have local family and people who live with me and near me who help me out on nearly a daily basis, when I need it. And they know I’d do everything I can for them, too. The more people who feel that sense of security, the better off we are. The less violent the world is. The less broken the code. Sometimes life is so hard that you don’t know how you are going to take the next breath or get through the next hour. Knowing there’s someone near who’s got your back? It makes the breath that much easier to take. If someone puts out a hand to catch you, it’s okay to take it, and steady yourself with their help.

Bias exists

So I admin a few groups on Facebook. We get new people applying every day to our co-op and the related subgroups. And our criteria are simple. People need to be local-ish to our area. They need to be actual people and not business puppet accounts (i.e. if the facebook name is “Rubbin Yerback” and all visible public posts are for the Rubbin Yerback Massage Therapy Studio, we’re probably going to send them a note asking them to join with a personal account. ) We need to have some sense that they are not shoe spammers. (These are accounts that will sit in any group they are in and autobot-post shoe advertisements for discount shoes.) And… no, that’s pretty much it. Local, not spammers, not business accounts (because usually business accounts join in order to advertise their businesses, and having a blanket policy just reduces headaches.) There are a couple automatic “ins”, including having friends in the group, mutual friends with me, or having a group member add them. But the automatic outs are business name, not local, and obvious spam account.

So, when you’ve been doing this for a couple years, you get a feel, just by looking at names and profile pics, as to which accounts are going to be “real” and which are not.

That’s bias. If I see a picture of a young Japanese woman, or a “supermodel-esque” professional shot of a young blonde woman, especially with name that doesn’t jibe with the picture, my first guess is going to be that this is a spammer. If I see a picture of a mom and a baby and a green background to the pic, I’m going to guess they’re probably local.

But I don’t make my decisions based on those things. I might say, “Bet it’s a spammer” and click through, and if they have my city as their home town and are NOT members of 200 groups and joined facebook yesterday, I’ll probably add them. A recent one was a very pretty picture of a girl with the name “Freckleton Molles.” The account was brand new and no visible friends… I ignored the request. If Freckleton wants to pm an administrator, we might reconsider (but given that the account was deleted a couple hours later, I’m guessing not.)

My point is we all have bias. It is natural for human brains to want to sort people and things and animals into categories. Predator. Not predator. Safe. Not safe.  Humans are amazing at pattern recognition… but we also tend to overcategorize. And when we have assigned categories, our default is to not look further. “I know this thing, I know where it goes, I know how to react, I no longer have to expend effort.”

We are deeply uncomfortable when things don’t fit our categories. And we often flat out don’t see unless it is pointed out when the categories are wrong.

But we MUST reexamine, and frequently, any categories we’ve made for people.

Lives depend on it.