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.

Baby food purees are a racket. Jenrose’s guide to babies and eating.

This comes up all the time, so I’m putting it here so I don’t have to keep typing it. The questions are, “When should we start solids?” and “What should we use as first foods?” and “Why not wait longer than 6 months to start (or conversely, why wait past 4 months to start solids?)

There’s quite a bit of research (and a lot of parental experience with grabby babies) that says there is a “sweet spot” around six months for starting experimenting with solids. Babies started later than six months or earlier than four statistically speaking tend to have more allergies and reactions. Too early and the gut is still quite permeable and immune reactions can be triggered, too much later and they don’t get the small exposures that teach the immune system to ignore food as not-a-problem. Theoretically.

But this is not going to be a line by line cited official paper, this is how I feed my kids, and an approach to eating for babies that I think makes a lot of sense. I’ve been parenting for 21 years,  have three children of vastly varying dietary foibles, allergies, sensitivities and pickiness, age 3, almost 10 and 21 1/2 at this writing, and have a zillion food issues so tend to read constantly on the subject. This is drawn from many sources, so if the wording appears familiar, it’s because I burned it into my brain at some point and don’t remember where I got it. I’m not looking up a darned thing for this right now, it’s mostly “what I tell people when they ask about it online”. (more…)

This isn’t about vaccination

Not really. It’s not about vaccination. Or welfare. Or religion. Or politics. It’s not about circumcision or abortion or gay marriage or Fox news or Florida or gun activists or Black people or White people or people who see the world differently or people who learn differently or any of the things that anyone, anywhere says are “ruining everything” or “causing all the problems”.

This, this, my friends, is about manners.

Here’s the thing about almost every SINGLE thing people rant about on the internet. At the heart of it, somewhere, someone’s story is there. It may not be a “beautiful” story. It may not be a “correct” story, but it’s their story. It’s personal. And when things are personal, people get hurt by the collective volume.

People have reasons for doing what they do, believing what they believe, knowing what they know, whether it is “correct” or not.

We walk a fine line, calling out the problems we see, between “shedding light on injustice” and blinding people.

It is too, too easy to forget that being right at all costs may have a higher cost than intended. And that insisting on “being right” may well guarantee that you will never, ever, EVER actually be able to persuade anyone who you feel is “wrong” of anything.

Don’t use the “Oh, but not YOU,” argument. That’s just insulting, just like saying, “No offense, but…” If you have to make that excuse, you should probably stop a minute and reconsider.

My eldest child’s school, shortly before we started there, had an issue with a child being bullied for having gay parents. The school had a long community discussion about an appropriate way to say, “This is not okay.”

They thought  about expanding the existing “No harassment based on race, religion or gender” to include “sexual orientation, disability” and a host of other things. Then someone very wise said, “Why are we doing it this way? How about we just say, “No harassment.” Because really, when, ever, is it okay to harass anyone?”

It eliminates the, “Well, but that doesn’t cover…. ” argument. Yes, I know we need to call attention to specific types of harassment because people just don’t think… but from a policy perspective, this takes the broad view, the, dare I say it, “constitutional” view, the “word it simply, broadly, and in a way that future understanding can expand the definition as needed.”

So when we started at this school, their policy just said, “No harassment.” Period. And I concur. Don’t treat people that way. Teach your kids not to treat people that way. That’s just good manners.

Now besides manners, this is also about effectiveness. About understanding. And about communication.

I grew up the daughter of a computer programmer and an attorney. To say that I was raised with the idea that logic and right and wrong are quantifiable and knowable is kind of an understatement. I spent most of my childhood and early adulthood wanting and needing to be right. The arguments I got into and my frustration at their illogic were epic. I was a lonely kid. And at the time, persuaded very few people.

The concept of active listening dropped into my life like a bombshell in my early 20’s.  I remember arguing a point of maternal fetal medicine with a nurse during my doula training, and her stopping me and saying, “The fact that you are still arguing with me means you are not listening to me.”

This is what most people miss. If you are shouting, you aren’t hearing… but if you are shouting, probably no one else is really listening to you either.

I feel strongly about a lot of topics. But mostly it boils down to manners, and understanding that people are people, and that we are all in this together and we need to start acting like it. And that doesn’t mean all thinking or being or doing the same things, it means understanding that we never, ever will and finding ways to live with each other in peace anyway.

So the next time, and every time, you are about to post or repost or share or retweet or otherwise propagate something in this incredibly diverse and divisive digital world (that is, after all, in the real world and mostly generated by real actual human beings and is about real actual stories that happen to people)… please, stop a moment. Look at it. Maybe it makes you laugh, or snort, or nod your head.

But is it doing so by putting someone down? By reducing them from real, mistake-making, struggling human beings to caricatures and straw men? If you share it, will it hurt someone you care about? Or someone they care about? Or someone you’ve never met at all but who is struggling that much harder because people find their lives funny or enraging?

If so, then please ask, “Will sharing this actually improve a situation that needs improving, or convince someone who was wavering, or improve the world?”

Or will it just get the choir nodding in the background and further plug your ears to the realities behind the situation at hand? Will it plug the ears of the people whose minds you most dearly want to change?

Maybe you don’t care. I want to think you probably do. But if your goal is merely to be “right” or to look right or to appear smarter or to align yourself with the people you respect… please, stop. Think. Go here and read for a while, it’s useful. Look at your face to the world. Stop harassing people, and start listening.

We are a rich tapestry of stories and lives and perspectives and reasons and backgrounds. The world is made more complete by the variety and complexity of us. More interesting. In the long run, it is humanity’s variety that creates our ability to persevere. Value the fact that everyone doesn’t think like you, or me, or that guy over there. We would learn nothing if everyone understood the world in the exact same way. And we are, none of us, perfect.

I get the urge to yell. I’m a mom and live in a family and it’s made up of human beings and fur beings and we’re all of us fallible, even me. But yelling creates silence, or it creates more yelling, or it creates hurt. There’s not really much middle ground here. And it’s not very useful in the long run at fixing, well, anything.

Stop yelling. Please.

Start understanding.

To the mom of an autistic kindergartener.

Screw percentiles. Screw “Developmental age”. Feck the “he’ll never” or the “she can’t” and to HELL with “you’ll just have to accept”.

The most hopeful thing anyone ever said to me when my daughter was in kindergarten, in Life Skills, intelligence not testable, was “most of the kids in this class learn to read.” We discovered by accident a year later that if the text was big enough, she could read quite well. Silently.

Fuck test results. Love your son. Presume competence. Eliminate barriers. We’ve got your back.

On finding out the gender

Snipped  from a conversation about finding out the gender in utero.
Today, my 3 year old son insisted on wearing a skirt all day. Amusingly, his black, heavy shoes are handmedowns from his 9 year old sister, who needed them for orthotic reasons (they were her shoes when she was 7 or 8. He’s 3.) The skirt he picked out at Costco for himself. The fish shirt is his FAVORITE. The jacket is supposedly “girls” from the tags.
My 21 year old daughter is now using they/them pronouns, has hair almost as short as my son’s (was shorter), and rarely wears anything remotely feminine. I’m over the whole gender binary thing. When people say boy and girl, these words, they do not mean what people think they mean.
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I guess my point is that one might find out in utero what sort of bits and bobs a kid has, but it will give absolutely not one iota of information about the person they will become. Not a thing. Our abstract gender notions are so far off from the reality of who kids are, that it’s pretty meaningless, even if they are cisgendered in the long run, what it means to be “boy” and what it means to be “girl” are so wide and overlapping that I just don’t see the point. It’s like our abstract notions of what it means to be one race or another. The variations within any one race are greater than the differences between races, in almost every marker. The only things an ultrasound can really say (and even then it’s not infallible) is whether a child has a penis or a vagina. Heck, with transgender men giving birth, and transgender women banking sperm to use later, and lots of people not actually having kids at all, it doesn’t even tell you if they’ll someday be a mother or a father.
I get the whole “loss of the idealized baby” grief. I had that in spades when my middle was diagnosed with a chromosome difference that completely blew out of the water all my expectations about parenting, pretty much from the moment she was born and every moment after. I’m not saying it’s wrong to be sad or glad or whatever. Feelings are feelings. They’re not wrong or right. If you’re sad, you’re sad. If you’re delighted, you’re delighted.
But realistically, even if you know, and you “get what you want”… you don’t know, and won’t know and maybe even can’t know. I have a friend who transitioned at 46 years old. And know kids who are transitioning as young as five years old. All that little hamburger or hotdog on the ultrasound will tell someone is whether their kid has an innie or an outie, for the moment. It says nothing about what they will like, what they’ll want to play with, who they will be, who they will love, or how they’ll want to dress. It doesn’t tell you whether they’ll be energetic or quiet or bookish or athletic or good at math or amazing with colors or struggle endlessly or float through effortlessly or whether they’ll look good in pink or whether they’ll be delighted at spinning in a twirly skirt until they tumble to the ground.
I’ve been thinking a lot about gender, about neurodiversity, about social expectations of children and cultural notions of what it means to be male, to be female. I’ve never felt like there was anything inherently wrong with having female bits (although I was thrilled to no longer have a uterus once I was done using it for babies), but I’ve never in my life been much good at “being a girly girl” as our society seems to define it. And as I see a lot of young people struggling with notions of gender, my feeling that the whole binary thing is just so much horse pocky gets stronger and stronger. There’s nothing wrong with my gender. There’s nothing wrong with my skirt-loving son or my short haired daughters. Society, on the other hand, is really fucked up.
I put Shiny in pink sometimes, and she wears dresses sometimes, because they’re colorful, she looks good in pink, and the clothes are cute. Miles gets more pants and shirts… but often throws a skirt on top if he has his druthers. Handmedowns provide him with an endless supply of pink jammies and twirly skirts and dresses. He honestly dresses almost exactly the same as K did, 18 years ago, with almost an identical frequency of skirts, or pants, or sometimes both. Which just goes to show you exactly how much influence a twirly 3 year old’s penchant for circle skirts and tulle has on their identity as an adult. We just don’t know, and it just doesn’t matter all that much. Like I’m going to love them one iota less?
My main struggles are editorial and habitual… I was raised a fairly strict grammarian, and singular they in reference to a known person just makes me twitchy. Not morally, not intellectually… grammatically. And I spent 21 years thinking of K as “she”, and it’s a brain plasticity failure that I haven’t made the leap easily.
But that’s my problem, not my kid’s. I may stumble over pronouns, but I stumble not at all on loving them with my whole heart.


Because I’ve typed this out for two or three people in the past 24 hours plus shared it with someone in person, here’s what you need to know about some of the big causes of coughs.

1. Pertussis: ANY cough which goes on for more than 3-4 weeks is suspicious for pertussis. Moreso if it involves sudden horrible bouts of coughing in someone who otherwise feels fine, especially a couple weeks after a “cold”.

What I wrote in 2004 when I had pertussis: http://www.dailykos.com/story/2004/12/13/79497/-Whooping-cough-the-quot-new-quot-epidemic-that-nagging-cough

(This was a year where they claimed there were 25,000 cases reported, but we suspect there were between 10 and 150 actual cases for every one that got officially recognized by the health departments/CDRC.)

2. Asthma: Chronic low grade coughs not really related to illness (sometimes illness comes because the lungs are already compromised, instead of the other way around), especially in young people, are often related to asthma. There are lots of medications for asthma, but for non-life-threatening asthma that hangs around making people cough, the place to start is magnesium. Read more about it here:

Magnesium for asthma: https://www.facebook.com/note.php?note_id=432901887077 is a brief, informal summary. The short of it? Try magnesium if you have asthma, it won’t hurt and might get you off of asthma meds if it works.

3. If you have figured out the underlying issue causing a cough (for example, virus, bacteria, asthma, whatever) you’ll want to find ways of easing it.

My lowest tech approach starts here, with cocoa, honey, and cherry juice. All of which have actual research and scientific rationale, plus they help. They really help. http://jenrose.com/cocoa-water-and-cherry-juice-for-coughs/

Antibiotics can help if a cough is caused by a bacteria AND the problem is bacteria actively producing things which irritate the lungs. They cannot help viruses and while they will shorten the contagious period for pertussis, see the above article for why they’re not a cure-all.

Reflux can cause a chronic cough–treatments vary, hubby takes the generic of prilosec.

Robitussin/Mucinex both are supposed to help thin the secretions. Spicy foods, hot liquids and merely drinking a lot of water can do as well for most people. Skip the drug and go for the hot foods (Thai soups are a family favorite) and chicken soup for a similar effect. Take the mucinex if you can’t deal with soup or spice.

Plain ol’ mentholyptus cough drops can be a big help short term. They also help nausea for some people. Essential oil preparations may help.

For children, a barking cough at night is often croup. First step is to take your phone and your child outside into the cool night air, and do your best to cheer them up. If that doesn’t help their breathing quickly, or they start getting pale or turning blue, call 911 immediately. For kids prone to croup, talk to your doctor about keeping a supply of steroids, a nebulizer and if necessary, oxygen and an oximeter on hand. When Shiny was at her worst with croup, we went from going to the ER every month or two, to almost no ER visits at all, because with the steroids on hand I could just treat her when the telltale symptoms appeared. It never got bad enough to use the oxygen at home. The difference between a croup cough and pertussis cough is that croup cough starts with the barky whoopy cough and they don’t get much of a break–it is a short illness, albeit terrifying. With pertussis, the cough gets worse over the course of weeks, and a kid may appear “fine” in between turning blue coughing. The fever tends to be higher with a viral croup as well. Croup hits like a ton of bricks and is done, pertussis sits around throwing bricks at you and mocking you for three solid months. With croup, keeping a child calm and happy and giving them cool air to breath is the fastest way to stop the immediate problem, but it often gets bad again when you go inside, so it is worth treating medically for most parents (vs. sitting in the cold all night.) Steroids work within hours to bring the breathing under control, and a single d0se may work for 3 days, by which time the body has usually fought off the underlying problem.  Epinephrine or albuterol will open the passages immediately, the two together take a bout of croup from potentially deadly to merely annoying within a very short time.

There are many, many causes of cough–I’m only covering the ones that seem to come up all the time for my circle of friends.

Rule of thumb is if the cough is productive and the chest is congested, work harder on thinning the secretions and reducing inflammation than on suppressing the cough. Suppressing the cough at night should be done cautiously, and with the least means possible. Cocoa is good because it does not eliminate the ability to cough, it just gives you more control, which means you can sleep longer.

If the cough is not productive, suppress all you want. Start with cocoa and cherry, consider basic cough drops, I generally skip dextromethorphan (the “DM” of Robitussin DM) but I do like Benzonatate, which has the side effect of actually relieving some of the chest pain. Opiates (codeine and others) can be effective but have a LOT of potential side effects (headache, constipation) that make them particularly not fun.

Teaching consent

Someone recently posted for discussion an idea they’d heard (not agreed with) that “Guys are the gas and girls are the brakes”. This was an infuriating concept on pretty much every level, but got me to thinking about the messages we send kids and what we need to teach them. Because in my experience, a HUGE percentage of rapes are as much a result of poor training and lack of consideration as actual malice or active intent.

Messages like “Guys are the gas”, or “If she doesn’t say no, she means yes” actually train guys to rape. It is entirely possible for a sexual encounter to seem like “no big deal” from one side and “soul destroying devastation” from the other, and when that is the case, ultimately we have to point at training. I have, in my own personal experience, known men who raped without being aware until after the fact that it was rape. Who once informed of the issue, corrected their behavior and expectations. Those are training issues. And we can fix them.

There has been a lot of talk recently about a relatively new concept… “Yes means yes”. Training kids that the default is “respect boundaries until invited in” is essential, fundamental to changing the current paradigm. How does that look?

I’ve started with my son while he is still a toddler. He’s not even 3, is still breastfeeding, and I’m setting limits with him about grabbing and touching. He has to ask if he can nurse. If I say no, he doesn’t get to grab. I don’t put up with him casually grabbing my boobs anymore at all, or with him getting aggressive with me.

We have to start that young. We have to teach little kids that hurting people we like is never okay. Simply insisting on manners can go a long way toward teaching mutual respect. Teaching those manners often requires demonstrating them. My husband and I spend a couple weeks saying to each other, “May I please be excused?” at the dinner table, because that was what reminded my son to ask. Things he says, “Gimme” for are rarely gotten. When he says “Please, may I” he usually gets what he wants if it is reasonable.  I am often startled by how few children actually ask for things rather than demanding.

But most important, I think, is teaching simple self control. Delayed gratification. Teaching kids to think forward about consequences. It is not impossible. But the teaching never stops. I spend hours talking to the 21 year olds in my life about boundaries and limits and ways of handling the tricky situations they find themselves in.

In a lot of ways I’m very glad that I was born female, because I suspect that with the kind of training boys and girls got when I was a kid, I probably would have ended up raping someone without even understanding it as a young adult.

We teach kids a lot about “no means no”, but when you factor in the “freeze” response to “fight or flight”, the fact of the matter is that someone has to be able to communicate in order to say no, someone who is scared or drugged may not be able to do that. It has to be, it MUST be, “Yes means yes, No means no, Stop means stop, and silence is not consent.”

We have to teach kids to separate fantasy from reality. We see so many “sexy” scenes on television where an aggressive kiss with fighting back becomes willing participation…but in reality, we can’t risk that. The freeze response creates relaxation, and that relaxation could easily be confused for “lack of rejection”. It is possible to have fantasies of being overpowered, while absolutely never wanting that in real life, and we have to teach our kids about the difference. I can love reading science fiction and reading about space flight and not actually ever want to sit on the rocket ship, you know? I can adore stories about medieval cultures without ever wanting to live in a real one. I can enjoy watching a drama on television without ever wanting my life to be that dramatic.


is a good starting point for understanding why “No means no” is never enough.

First pass at a public comment for the new baby sling regulations.

I have been a babywearing educator and advocate for 20+ years, since not long after my first child was born. Our first sling was a stretchy wrap. Our second, a pouch. I spent 5 minutes looking at the pouch, went to my sewing machine, and converted my wrap to several pouches, and used those to carry my then-toddler for months. So you could say I “designed” my first carrier just over 20 years ago. A few months later, a doula client of mine said she’d dreamed of turning a bed sheet into a sling by tying the corners–I blinked at her, said, “Not like that” and a few minutes later we’d fashioned a “hammock style” (to use the language of this proposed regulation) sling out of a queen-sized bedsheet folded, and then knotted at her shoulder. She cried, because it meant she could make a peanut butter and jelly sandwich, now having two hands free–with a fussy infant, she’d been subsisting on ramen noodles for weeks because she could make them one-handed.

I say this to demonstrate the utter impossibility of any regulation or rule ever eliminating babywearing, as some have suggested, and also the difficulty of trying to micromanage micro-mini-cottage-type businesses. If a woman can make a baby carrier out of a sheet with no advanced training, no internet (this was 1994) and no babywearing community supporting her, you will always, always have people sewing for friends and family and neighbors.

A few months later, at a Midwifery Today conference, a “tricks of the trade” circle at which many midwives from around the world were in attendance taught a couple hundred midwives that a similar bedsheet could be used as a warm climate back carrier (obi-style wrap), a cold-climate back carrier (Inuit summer style), a front “pack” (two shoulder rebozo front carry with no knots), a back torso carrier (think kanga-style)… this was a bedsheet older than I was, thin, worn, pilled, probably poly cotton, washed hundreds of times. And still functional.

It takes a lot for a fabric to be truly unsuitable for babywearing. I have seen it. I’ve made carriers that ended up in the garbage a few minutes later because my own quick test with a doll said that they would not hold up a feather, let alone a baby. One manufacturer sent me a carrier which had one layer of twill on one side and one layer of silk on the other…. but it was a mei tai, so all the stress went on the shoulder strap seam, which failed in the middle of putting my child on my back. I’ve seen ring slings with big rings and thin, slippery fabric.

But the worst carriers I’ve seen, the ones that I would dub completely unsafe from the start, were put out by large corporations. Far from the relatively unstructured ring slings that are most common today, they actually gave directions and harnessed children into positions which were inherently unsafe, and prone to positional airway issues. The Infantino Slingrider debacle never should have been allowed to go on as long as it did. We were warning people against those carriers for years before they were recalled, to the point of going up to people in grocery stores and begging them to use something else. I started trading people for something in my stash just to get the dang things out of the used/resale market, and took to buying every one I found there. We can’t dismiss it as impossible for a design or fabric to be faulty–they clearly can.

We have come incredibly far in the babywearing community. With my first child, I had no clue what was out there, and thought I just “needed a snuggli or something”… my midwife directed me to a stretchy wrap, Mothering Magazine to a pouch. By the time my second child was born in 2005, there had been an explosion in the number and types of baby carriers on the market. From maybe a dozen or two, to hundreds, in a little over a decade. By the time my third child was born in 2012, taking to other pregnant moms, it wasn’t a question of whether people were going to wear “those sling things”, but , “Which stretchy wrap are you going to get? I can’t decide whether to get my husband an Ergo or a Boba or a Beco.”

We have managed tremendous feats of education of the general public around the whole idea of babywearing, and around babywearing safely. But there is also room for colossal failure. When longtime babywearing educators promote cutting the bottoms off of t-shirts and using them as a Ktan-style carrier, we have a problem. Many people might be able to make something like that work…but there are so many potential failure points that it is terrifying to contemplate. The price of failure is so high…

There has to be some middle ground. I’ve always been opposed to certification, but maybe we need an option for manufacturers to get certified in making sound fabric choices, in understanding the mechanics and safety considerations. Even a $300 or $500 course would be more manageable and would not eliminate the possibility of bespoke/semibespoke carriers.

A guide for my daughter, on her “emboozeling”.

I’ve now been a mother for 21 years. My daughter requested to try a fair number of drinks for her birthday, and so we had something of a “tasting menu” after dinner, which we dubbed her “emboozeling”, with a variety of cocktails and sips and smells of a variety of other things. She had maybe the equivalent of a drink and a half over the course of the evening (tasting at least 8 different drinks), and then came home and made herself a rum and coke float.

She has been plied with much advice over the past few days. I’m putting it here so that it is in one place.

1. Understand the size of an actual serving of alcohol, and be aware that drinks vary wildly in their alcohol content.  Or as my aunt says, “Stick with beer or wine or straight spirits unless you can watch the bartender.” My cousin amends, “Or make the drink yourself.” Object lesson: a “California Libre” (rum, coke, and lemon slice) has half a serving of alcohol the way my husband makes it. A Manhattan has two and a half servings. And some cocktails have as many as five shots in them. That’s one “drink” that is actually five servings of booze at once.

There are two main categories of things people do with hard liquor… some are “sipping” drinks that you keep in hand for a while so that people don’t keep offering you booze faster than you want to drink it. And others have a ton of alcohol so that you get as smashed as possible as quickly as possible. You cannot tell which is which just by tasting them.

The shorthand is that a shot (1-1.5 oz) of hard liquor is a serving.  But hard liquor can vary from 35% to 75% alcohol (not counting everclear types), so this is a rough guide. Know what you’re drinking. 5 oz of wine is considered one serving, but wine also can vary from 6% to 16% alcohol, give or take. We’ve seen firsthand what happens when someone used to 7% wine suddenly starts drinking 13%…. And 12 oz is one serving of beer, which varies from about 2% to about 5% alcohol (with some outliers).

Glasses are deceptive in their sizes… if you really want to know how much alcohol you’re getting, measure it. Don’t eyeball the highball.

2. Know your limits. In order to avoid most of the problems that can come along with alcohol consumption, it is wise to limit consumption to no more than 3 servings of alcohol in one sitting, or 7 servings in one week. Binge drinking kills brain cells, and most of the worst things that can happen to people related to alcohol happen when they have a lot of booze at once. Your liver and brain are precious to you. Be kind to them.

(And for future reference, pregnant women should drink no more than 1 serving in a given day, preferably no more than 1/2, and no more than 3 to 3 1/2 servings per week. There’s lot of research showing this to be a safe maximum level of consumption for pregnancy, with no increase [and possibly some decrease] in negative effects short and long term for the baby vs. abstaining. Negative fetal effects are caused by heavier drinking, more than 1 serving per day, more than 7 servings per week, and any binge drinking. Even one binge drinking episode can have negative effects, and those effects can be devastating and lifelong. We don’t know where the cutoff is between 3-7 drinks per week, erring on the side of caution is keeping it under 1/2 measured serving per day. The curve is “J” shaped, and steep.)

Moreover, if you find yourself “needing a drink” or reaching for alcohol after stressful events on a frequent basis, be aware. Never treat drinking as “mandatory” or “assumed” or “expected”. It should be a choice you make, each and every time, and done mindful of the consequences. Do not slide down the slippery slope. It’s okay to be the designated driver, and it’s okay to choose friends who do not lubricate every social event with alcohol. Drinking is not bad or wrong in and of itself, but there are risks, and a potential for abuse, and it’s much, much simpler in the long run to have personal rules that limit the possibility of it becoming a problem.

3. Alcohol metabolizes at approximately one drink per hour. Not one cocktail, not one large solo cup full of beer, but one SERVING of alcohol per hour. Men may metabolize a little faster, women a little slower, and body weight matters– smaller people metabolize slower than bigger people when it comes to booze, most of the time. The best rule of thumb is do not drink and drive, ever. With a great deal of experience with both my personal limits for drinking and driving, I have learned that I can, in fact, have a small amount of alcohol at dinner and then drive safely a few hours later. But it’s less than a full drink for me to be comfortable doing that, and I can feel the minute I should stop, and I’ve been driving now for 26 years. If you have a measured drink and must then drive somewhere, make it be at least two hours after you finished the drink. Or call me for a ride. Or call a taxi. ESPECIALLY if you are at a party, do not count on “I only had one cup”. I have had the experience where I thought I had one glass of wine and a boy kept surreptitiously pouring more into my cup when I wasn’t looking. Not to get into my pants, but just because he thought it would be funny. Taxis are way cheaper and less dangerous than DUI. Much less hassle.

Even small amounts of alcohol can dull reaction times, way under the legal limit. There are people in this world who are capable of driving competently at .08. But even if you’re under .08, you can still be impaired enough to do damage, and the cops can arrest you for DUI if you’re intoxicated at all and driving badly.

If you are at a party and your designated driver is drinking, call me. Call a taxi. I don’t care which.

4. You can make really delicious fancy drinks without alcohol. Mixers can be very tasty. Tonight we had ginger ale, peach sorbet, grenadine, rose water and mint. It was every bit as good as the version that also had zinfandel in it. Virgin margaritas can taste way better than the boozy ones if made from scratch (and restaurant margaritas can be the worst for giant drinks that get you smashed quickly.)

5. Regardless of the politics of rape… the fact of the matter is that the vast majority of rapes are committed with the use of intoxicants (not only “mickies” like roofies or GHB, but just flat out getting someone so drunk they can’t resist or consent) and by people the rape victim knows. Keeping your hand over your drink (to avoid the sneaky top off or drop in) and keeping an eye on your drink from bottle to mouth is prudent. If something happens and someone rapes you while you are drunk or drugged, it will absolutely NOT be your fault. But there are ways of minimizing the risk of that happening in the first place.

When I went to college we were warned against leaving drinks unattended (males and females alike), not because of the risk of rape or roofies, but because at that point there were assholes running around who thought it was hilarious to drop PCP into people’s beverages and then watch them freak out. Especially at campus parties and special events, where eating brownies was just about guaranteed to get you high (pot), and taking random cups of beverage could be a long trip off a short pier.  If you choose to experiment with drugs, do it knowing exactly what you’re doing and what you’re taking and what the consequences might be, legal, medical and psychological. Don’t do it blind. This kind of stupidity does, happily, tend to be confined to bars and college parties in my experience, the more random people at the party, the more vigilance you should have, in general.

And if you see someone doctoring drinks or encouraging someone who is already too drunk to drink more… call them on it. Loudly. Make a scene if you have to. Call the police if necessary. Any group of people worth hanging out with will back you up.  That shit isn’t cool. Pushing alcohol past the body’s natural limits is dangerous. And drugging people without their knowledge is bullshit.

6. There is no sorority, fraternity, group, social club, or date worth risking alcohol poisoning to stay involved with. None. Any group or person that does not take “I’d rather not” or “I’ve had enough” as a completely valid reason not to imbibe intoxicants is not worth being around. See #2 and #3.  (Also: if you are going to violate the “no more than 3 drinks” rule, it better damn well be spread out over as many hours as you’re having drinks. You only have one liver.) You can do a drinking game with non-booze or diluted booze.

7. You’re legal now. You can buy all the booze you want. Do not, ever, under any circumstances, buy it for minors. They’ll ask. You can blame me if you want… “My mother would never forgive me if I bought you booze and something bad happened.” Secret: I might, eventually forgive you. But it would take a very long time. Don’t do it. That kind of popularity is not worth having.

8. Drink as much water as you do alcohol. On days when you have more than 1 drink, consider taking extra b-vitamins and an aspirin to help your body have fewer side effects. If you ever DO drink more than you normally would or should, consider R-lipoic acid (or the more easily available alpha lipoic acid) to help protect your liver and brain from the toxic effects of alcohol.

9. Caffeine cannot make someone sober. Nor can exercise. It takes time to metabolize alcohol, period. If someone you are with is having a hard time (vomiting, passing out) do not treat it lightly. Watch them. Call for help if needed (and err on the side of calling for help vs. waiting it out if they are having trouble staying conscious). It’s okay to be the person who says, “Enough.”

10. Alcohol is not just alcohol. Many alcoholic beverages also contain high fructose corn syrup, artificial colors and flavors, sulfites and other preservatives. Mixers can be particularly bad in this department. Distilled beverages derived from wheat are unlikely to contain gluten, per se, but may be irritating to the system for other reasons. If you notice negative effects after a particular beverage, it may not be the alcohol causing the problem, but something else. Wine headaches are usually sulfite allergies. Beer can contain gluten, though it often is tolerated okay, because of how the fermenting process works. There are wines that do not contain detectable sulfites, beers made from sorghum which were not made from gluten-containing grains. “Malt beverages”, often referred to as “wine coolers” are often made from gluten-containing grains. You can mix your own coolers (Lemonade and red wine is delicious) or highballs (little bit of rum, lot of limeade) with things you handle better. Get to know what you tolerate. Keep in mind that some beers and wines are clarified with a variety of substances that precipitate out things that make them cloudy. Some of those “finings” are possible allergens. If you notice yourself reacting to a beer or wine, it may be a brand-specific issue, not “all of that variety”. Cheaper liquors are notorious for the artificial colors, flavors, and HFCS. They often don’t list ingredients. It will take time and experimenting to find the ones you handle best.  Clear, good quality alcohol (gin, vodka) diluted in fruit juice is probably your safest bet, potato vodka and sake are probably the least allergenic things out there.

11. If you don’t drink beer very often, it’s way easier to afford getting the good stuff. That’s true for most alcohol. Booze can be expensive, the temptation is to go cheap. I tend to prefer to drink less, but better quality stuff when I do.

12. Alcohol can be medicating. Like all medications, it has potential side effects. It is a depressant by nature, both in that it depresses the central nervous system, and that it can worsen depression. The worst time to drink is when you are depressed. It is a muscle relaxant. This can be useful, in moderation, occasionally. It tends to reduce anxiety and inhibitions, and in small quantities this can be useful in some circumstances. It can also reduce your control, coordination and general competence level, which is not usually worth it in high pressure situations. It can relieve pain, temporarily, short term. But it tends to “put off” difficult things, rather than fixing them. It is not an easy way out, no matter how simple it seems. There are times when a stiff drink (stiff=probably containing several servings) may well be an expedient short term “solution” for emotional pain. That’s *a* stiff drink. If you find yourself needing that drink on a regular basis to deal with an ongoing situation…consider finding other ways of dealing with the situation, or the “cure” may become the problem.

Alcohol can be fun. It can be delicious. It can be relaxing. It is not without risk, and being aware of those risks and intelligent about your choices will reduce the chances of having an alcohol-related disaster.

Personally I’ve gotten throwing-up drunk three times in my life. It is not fun and it is not worth it. 2 drinks are more fun than 5, and more than 5 is a trip to the porcelain throne. There are people who will brag about having a much higher tolerance for that. Don’t be those people. There are much better skills to develop and higher aspirations to have.

You don’t have to be obnoxious or superior about not wanting to get drunk, easy enough to say, “I’m a lightweight” and act a bit sillier than you feel, while sipping your highball (heavy on the orange juice, light on the vodka) slowly. My personal interest is in you preserving your brain cells. And the rest of you.

Happy birthday. I love you!

A response to a friend on the subject of “not all men”.

If I say, “White people enslaved Black people, murdered Native Americans, and interred Japanese in concentration camps” it is very obvious inherently that I’m not referring to “All white people”. It doesn’t mean it’s not a true statement. It also doesn’t mean it’s INTENDED to be a blanket statement that refers to all white people. And the least helpful possible response to “White people did this” is “Well, not me, man.”

The most helpful possible response is, “Wow, those were shitty things to do. Why don’t we do whatever we can to make sure they don’t happen again.”

And yet… when women say, “Men rape.” Or “Men beat women” or “Men are in a position of power in this culture that puts them at an inherent advantage.” Or “Men made my life miserable through much of my childhood”… one of the first responses they get is an indignant, “Not me! Not all men do those things!”

Which is a complete distraction.

It is true that men rape. It is true that men beat women. It is true that men have an inherent power advantage due to our culture’s biases.

That does not mean, OF FUCKING COURSE it does not mean that “all men” rape. Or that “all men” beat women. Or that “all men” abuse their privilege.

Except… when you use (or try to use)  your inherent advantage to derail the conversation from “How do we stop men from raping, how do we stop men from beating women, how do we redress the inherent imbalance in our culture”…. you BECOME “All men”. It doesn’t make you a rapist, it just makes you part of the problem.

Do women rape? Yes. Do women beat men? Yes. Do men suffer because those things are invisible in a culture which assumes that because of men’s “inherent advantage” that those things cannot happen to them, that it is not physically possible for them to be victims? Yes.

The fact of the matter is that EVERYONE suffers from the bias in our culture. And the battle I am fighting, that most of the feminists I know are fighting, is one that not only lets our daughters fly and follow their passions and talents without false limits of gender bias… but one that lets our sons choose their paths as well, free of the biases that limit them too. I’m fighting for my daughter to have equal pay in the profession of her choice… and for my son to have equal access to parental leave if he ever chooses to have kids.

When we start saying, “We need to tell men not to rape” and someone says, “But not all men rape…” They’re derailing the conversation. And that conversation NEEDS to go farther. It needs to get from the basic, “We need to tell men not to rape” and get all the way to “We need to teach all our children about true and enthusiastic consent because otherwise we’re setting traps for our sons and destroying our daughters at the same time.”

When we start saying, “Men catcalling women on the street makes me feel unsafe and angry” and men pop up and say, “But we never catcall on the street” or worse, “We don’t mean anything by it, what’s your problem?”

They’re derailing the conversation. If you don’t catcall women on the street, fine. You’re not the one who makes me feel unsafe. I’m not going to pat you on the back for not being a douchebag, especially if you start being a douchebag by derailing the conversation before it can get to where it needs to go. You want kudos for not being a dick, get all the way from neutral into positive ally territory, and say, “I’m not sure I understand why that is so upsetting, but it is clearly very upsetting. So if I see someone doing that. I’m not going to be silent about it when I know how upset it could be making someone. Or even better, acknowledge that having random people invade your space uninvited because they’re acting like you’re their personal sex toy when they’re bigger and stronger than you is annoying at the least and terrifying at the worst.

That conversation needs to get from “Don’t catcall women on the street” to “Tearing other people down in order to impress the people you are with is a bad idea which makes you less of a human being and which hurts everyone involved far more than you think. Treat people with respect, no matter who you think they might be or what you might want from them.” It needs to get to the point of “Hey, women don’t LIKE being thrust onto a sexual pedestal when they’re out and about and minding their own business, because sometimes it’s just harmless and sometimes it could be a prelude to rape and we don’t KNOW until we’re safe that we are safe.”

(Hint: Not one man who ever catcalled me ever got the time of day. The ones who did? Treated me like a human being.) And if people are jumping into the conversation with “Not all men”, THE CONVERSATION CANNOT GET WHERE IT NEEDS TO GO.

If you have heard. If you understand. If you have listened…. that is what we’ve asked. If your response to that is, “But I don’t….” You haven’t understood. You haven’t listened enough.

I can say, “Men do these things” and be correct, without that meaning that I think “all men” do these things. I don’t have to spell that out. I’m not wrong for saying it.

And if at this point, you’ve already reached that conclusion… you can give yourself a gold star and move on. Not my job to pat you on the back, not my job to reassure you that you’re not “tarnished” with the “stain” of all men. You either already know you aren’t, or you need to figure it out, or you are, in fact, part of the problem. I respect you enough to believe that you can, in fact, figure out where you are at in this equation and figure out where you need to go, or at the very least what questions you need to ask.

We *all* find ourselves at one point or another sharing a broad Venn diagram with others who do shitty things. The question is, are you in the overlapping circles? Or just happen to have a few shades in common without being in the problem area?

I happen to share “white” and “feminist” with some crappy ass people who treat women of color badly in feminist discourse. They do shitty things that I do not condone. I know where I fall in that Venn diagram, and the last thing I need to do is ask some Black lesbian to tell straight white me that I’m doing a “good job” at being an ally. I’d much rather take my time to actually BE an ally, and not derail her conversation from the fact, that yes, some White Feminists do some shitty clueless and downright offensive things that they need to stop doing (Hint: Don’t hold retreats at slave plantations when women of color are asking you not to.)

Anyway. I’m not mad at you, but you asked for a mediator and clarification. It took me a half hour to write this. I’m giving you that time be because you’re a friend, and trying, I’m willing to give the clarification. I’m also going to paste it out to my blog because I don’t want to spend the time again, which I could spend sleeping, or fighting the patriarchy instead of educating people who are already supposed to be on the same side.

Note: these arguments have been spoken by many others before me. I honestly don’t think I”m saying much that is new here, hopefully I’m saying it in a way that makes sense, since clearly the deluge of other sources hasn’t yet sunk in enough that I don’t still have people on my list saying, “But not all men!” or “I don’t!” as the response to “Men did….”

There are only a handful of men in my life who have mistreated me. I have some amazing men in my life, I chose to marry one of them. Don’t tell me you don’t mistreat people… tell me how you’re going to work to make sure that no one is mistreated where you have any power in the situation at all.


addendum for the blog: if you know of a cartoon, article, tumblr or blog post that addresses this issue well (or made one of these points first) please do link in the comments. I’m sick right now and don’t have the energy to track down the links to the amazing works that have helped shape my thinking on this.

I can’t believe we’re getting on the roller coaster again

So it’s been a while since we did a round of testing with Shiny. And the school is pushing for it, because they think she has vision and hearing deficits (duh) and want to qualify her for services on that basis. So I agreed to an audiology exam…. which was pretty useless, so they set us up for another one, which was marginally less useless, and now the audiologist is pushing hard to put Shiny under to do a sedated ABR to get better data.

I said no. What I really should have said is, “Over my dead body will you put this child under general just so you can get a slightly more accurate sense of how mild her hearing loss really is because you aren’t creative enough to get results with her awake. Fuck no, do not ask me again.”

And we went to the eye doctor and the sign language specialist wants Shiny seen at the Casey Eye Institute… which I agreed to right up until I learned it was part of OHSU. The staff was nice and pleasant and listened to me while I sobbed on the phone when they called (even seeing the caller ID was triggering) and talked about what they’d do in order to make it better… and then blithely mentioned the visit would last three hours. THREE HOURS. Three hours. Like they’re going to get anything at all useful after the first 20 minutes.

And it’s OHSU. They made noises about how they were separate from Doernbecher’s children’s hospital, which is where the worst stuff happened, but they are still solidly OHSU. I just don’t think I can. Like, I do not think I can physically make myself get into a car and go up there and walk in the building that I think shares a wall with the children’s hospital and not be losing my shit everywhere all the time. How can this possibly end well, no matter how good they are? And no one has told me how they could possibly improve things over what we’ve already done? Are they magically going to make her keep her glasses on? Wave a magic wand and give her better than 20/200 vision?

She is severely farsighted with astigmatism and she has had strabismus in the past but her eyes don’t seem to wander now. Honestly I think the right answer would be laser surgery but they won’t do it because of her age. And I think they’re wrong. I think if we wait until her vision is “stable” her brain will never adjust and a huge learning window will be lost.

If she’d wear glasses, it would be one thing, but the doc refuses to prescribe glasses that fully correct her vision, because of the distortion level, and I think that absent full correction she’s never going to want to bother.

Websites say, “Do whatever it takes to keep the glasses on”. We tried. It failed. Seriously we could put her in a straitjacket and she would just bang her head on the table until the glasses broke, she hates wearing them that much. I want to grab the doctors by the ear and drag them home and say, “You make it happen. I can’t.”