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!”