Am I Not a Woman?

I think I am a woman. Therefore, I am not a man?

Are those the only possibilities?

It’s International Women’s Day, people! How shall we celebrate?

Remember that nursery rhyme about girls being made of sugar and spice and everything nice and boys of snips and snails and puppy dog tails? (What is a “snip” in this context? Sounds like a cute but annoying magical critter from Harry Potter’s world.)

I resented the bejeezus out of that poem as a kid. I did not want to be defined as everything nice! I kinda identified as a tomboy, but that term didn’t make sense to my precocious self. Shouldn’t it be tomgirl? Either way, it didn’t really capture how I felt. I liked being a girl. I just didn’t like trying to fit into other people’s idea of what a girl should be.

(Also, what’s up with nursery rhymes and disembodied animal tails? Three blind mice lose theirs to a knife-wielding madwoman and puppy dogs have to sacrifice their tails to the formula for human boys? Mother Goose is a freak!*)

I am a cisgender, straight/hetero woman who firmly believes in and advocates for equal rights for all. I believe transgender and non-binary folks are the ones to dictate how they identify and wish to be known. (Goes for everyone, really.) I have no trouble respecting their wishes. Which is not to say I haven’t messed up a few times. I have. And, yes, I do still stumble occasionally over they/them/their in reference to an individual. Nowadays, mostly when reading. Progress — one awkward step after another. Awkwardness is a small price to pay in order to convey respect, to honor people for who they are, just as they are.

There is a new app designed to help “people who menstruate” track their periods. Some folks are incensed over this wording. Supposedly, not because women are people, but because, in the objectors’ opinions, only women menstruate. And get pregnant and give birth. (And endure endometriosis and undergo hysterectomies. Relish the joys of menopause…) These people feel threatened by non-cis folks, particularly by trans women.* Somehow, if society recognizes them for who they are and stops discriminating against them, they will not only no longer be marginalized, they will rise up, abuse cis-women, and roll back women’s rights to the early 20th Century. Or worse. (And worse?)

This kind of backlash against recognition of non-cisgender identities is not new. Last year JK Rowling* went public with her anti-trans thoughts that, among other things, only women menstruate; if allowed access, transgender women would threaten the safety (and sanctity?) of same-sex spaces such as women’s restrooms and changing rooms; and that all transgender persons should undergo extensive psychiatric testing and analysis before being permitted to transition — as in days of yore. Ah, 2020!

Sadly, none of her reactionary thinking is new. The only thing new here is that transgender people are gaining acceptance and progress is being made in ensuring their rights. Over 20 years ago(!) I listened to a group of women trot out fear-based, anti-trans ideas like Rowling’s to justify their policy of limiting participants for their women-only retreat to “women born as women.” Among the organizers were a couple self-described radical lesbians who were —how shall I put it — not fans of men. (I was a hired entertainer and had no say in the matter.) Their belief was that a person born (biologically) male, even one fully transitioned to female, could never shake the male privilege bestowed upon him by society. He/she* had the lived experience of a man for most of life so far, which colored his/her future as a so-called woman. Women at the retreat would not feel safe — maybe not be safe — with such people around.

Many of the women attending the retreat had been victimized by men in various ways. Some had been victimized by women. Some of us lucky born female types, by both sexes. I have yet to meet a person who has been physically or sexually assaulted by a transgender person. I do, however, know one person who was emotionally abused by a trans person. Which to me is a weird kind of progress. One’s gender identity or sexual orientation or race or religion or lack thereof (the list goes on) does not erase the possibility of being an abusive jerk. Or worse. Or better. Even much better.

By the time of the women’s retreat mentioned above, I had had the pleasure of meeting several gender non-conforming people, including persons born with indeterminate or otherwise unusual sex organs. All of them had experienced discrimination and most had survived more than one kind of abuse. In the years since, I have met several more such persons and all have had experiences of discrimination and some have endured abuse as well. Some of those experiences have been in women’s and men’s restrooms and locker rooms. That trans women were victimized in women-only spaces did not surprise me. As a woman, I have never felt all that safe in such spaces. Not only because I have seen Carrie and Mean Girls, but because my body and womanhood have been picked over and negatively assessed by other females in such spaces since puberty and I was once physically assaulted by a gang of teenage white girls for not knowing my place. As it is, little more than convention prevents a man, looking and feeling like a man, from entering a women’s restroom. Obviously female as I am, I have mistakenly entered a men’s restroom twice. Both times I found myself inside a urinal-lined facility, I apologized emphatically while making a hasty exit, flabbergasted at how easy it was to blithely go through the wrong door!

In justifying her anti-trans position last year, JK Rowling disclosed that she has been a victim of domestic abuse and sexual assault. In Rowling’s reasoning, this history that she shares with so many women is why she so fervently advocates for “safe” same-sex spaces. And thus, those efforts are to protect women and further the cause of women’s rights, as opposed to seeking to deny transgender persons their rights. (Or to police who is and is not truly a transgender woman.) In my opinion, Rowling’s position does disservice to women, men, and transgender people. Yes, women have a long history of being abused by men. In that history there is no such thing as a truly safe place. (Sorry, but that’s just factual.) It is also true that men are not the only abusers and women not the only victims. Awareness of the problem has grown, women have learned how to protect themselves, ensure their rights, and lead the effort (with many men and gender nonconforming folks working with them) to prevent such abuses, and the societal issues that often factor in to them, from occurring. In other words, I feel Rowling’s position, similar to the anti-trans policy of the retreat organizers, pits women against men, and sacrifices transgender people’s rights in the name of promoting the illusion of a safe and loving sisterhood of the female sex. A sisterhood that embraces menstruation, the “miracle” of birth, and a rather fragile view of femininity.

My celebration of womanhood need not narrowly define woman by bodily functions like menstruation. Nor do I need to blame “others” for what has befallen women over the years. I don’t need to have enemies to get ahead. The ongoing fight for women’s rights, healthcare, pay equity, and against domestic and sexual violence will not be diluted by including others. Quite the contrary, the more the merrier and stronger. In fact there is a lesson here in past women’s movements excluding more marginalized groups (usually fellow women) for fear of weakening the effort, only to regret it later. People’s rights are not a limited resource. A transgender person enjoying their rights does not do so at the expense of any of my rights as a woman.

And just in case it needs to be said, the idea that a transgender woman is nothing more than male privilege in women’s clothing, hormones, and maybe genitalia, is a profound misunderstanding of who transgender women are.

Yes, some people menstruate. Most of those folks are women, born as such. But not all. And some women don’t menstruate — and never did. Born with clear female genitalia but no uterus, for example. Or cancerous ovaries removed before puberty. I rather envy them. I haven’t menstruated since I was 36, when a surgeon liberated me from my uterus. (I almost wrote the uterus, but it was definitely mine.) Recovery was rough. In part because of the interconnectedness of the thing, but also due to a couple life-altering deaths that came on the metaphorical heels of that organ removal. (What kind of heels would my uterus have worn? I’m thinking impossibly tall stilettos that cause bleeding blisters, painful bunions, etc!)

I am a woman. One who has not menstruated for 20 years. I have birthed no babies. I have recently survived menopause. (For me that is very much the appropriate verb and, frankly, I want a badge attesting to same!) I am also a survivor of abuse and assault. You may share my public restroom, if you like. No matter what your gender identity, I respect you as a person. Because denying people their rights based on fear and stereotypes does not ensure anyone’s safety. I will also not let my guard down in such a place. Because I am strong and aware and am not a readymade victim because I am a woman. And because it’s a goddamn public restroom FFS!

*Don’t get me started on that Aesop fella!

*I’m using “trans woman” instead of “transgender female/woman” as the shorter is how my transgender women friends identify themselves. A couple of whom have had menopause-like hot flashes. Sorry, gals! Would have spared you that if I could’ve, but, you know — estrogen!

*Why, yes, that Harry Potter reference earlier was a foreshadowing device. Nice of you to notice!

*We didn’t use “they” back then. Even so, “she” would have been appropriate in this context, but the anti-trans women would not allow themselves to use female pronouns for trans women.

Collaborating with My Wolf (part 3)

Fight or Flight or Freeze or …fuggedaboudit — pronounced di-ˈnī(-ə)l! Or … work it out. Cooperate. Negotiate. Give and take. Federate.

Federate? Yeah, no. I’m going to have to forego alliteration here and stick with my go-to word for my favorite type of artistic process: collaborate.

For me, collaboration is not just working together. Rather, it is an intimate process of channeling different perspectives and talents toward a common goal. It’s often challenging and sometimes counterintuitive. It demands consideration (meaning deliberation, examination, attentiveness, respect) and letting go. In my experience, the most rewarding collaborative experiences involve a lot of letting go. Collaboration may not be the best process for every project, but when it works well, different visions and approaches accommodate each other and create something wholly unique that would not have been conceived without all those adaptations along the way.

So, what on this bluish orb teeming with life do I mean by collaborating with my Wolf? How do I accommodate and adapt to and with these diseases? Diseases of unknown causes, at that. Does collaboration mean we will never struggle? Hahahaha! Sorry, I meant to say, no. Hell no! Collaboration is a very different approach than fighting, to declaring oneself a warrior against a foe, but that doesn’t mean a collaborative effort will be free of conflict. No, not at all.

Originally, I titled this series, “Collaborating with a Predator” — then I quickly realized that sounded as if I were aiding and abetting the likes of Jeffrey Epstein. Nope! Hell no! Hell no to the 10th power! I just wanted to convey my idea that my systemic lupus is wolf-like, not just because of the Latin nomenclature, but due to its near-predatory nature. Wolves are true predators, organisms that primarily obtain food by hunting, killing, and consuming other organisms. Sharks are predators. So are humans. And Venus flytraps. Sea slugs, too. But I digress…

Obviously, I’m going for an analogy here. Metaphor, even. I think. But, clearly lupus is not an organism.* It does not hunt for food to bring back to its den of adorable, baby antibody luppies. But it is like a predator in that it claims its host as its territory and causes damage to the organs and tissues within by killing healthy cells. All sorts of prey all over its territory. (SLE is one of the more wide-ranging autoimmune diseases, quite the omnivore.) All this killing depletes the host and almost appears to feed the disease. It may not be accurate to say lupus targets its prey, but it has its favorites: skin, kidneys, heart, lungs, brain. Blood. Joints. Mucous membranes. And without intervention, it just keeps inflicting damage.

So, collaborating with a predator, something that naturally kills and for which there is no current means of eradication — a cure, in this case. There are treatments, attempts to tame the beast, if you will. Beat it back into remission, into hiding. But while some might protect the organs for a time, they may not help the person feel better. Or to know how to live with this enigmatic disease. This refractory disease.

“Lupus is an inflammatory, refractory disease.” That is one of the most affirming sentences my lovely rheumatologist has said unto my self-deprecating person. Refractory, as in resistant to treatment. So, it’s not my fault! This thing is just obstinate. And wily. Almost, slippery. I gotta learn to live with it. Even as it keeps changing, adapting.

I live with several chronic diseases. (It’s crowded round here. No wonder I’ve gained weight!)* One of them, asthma, has been with me since birth. Thankfully, my asthma has been well controlled for decades now. But that was not the case when I was young. As a child, I was persuaded to fight through asthma attacks — to “persevere” — despite drowning in mid air. I had a number of close calls. But hey, whatever doesn’t kill you, may damage your bronchi and your confidence in the adults assigned with your care.

I was told I would grow out of my asthma, but in my first college go-round, the miasma of chem labs and major personal stressors took my asthma to a whole new level. (Yes, I enjoyed that!) I had to stop fighting — on more than one front — and decide to accept and work with my chronic health condition. That shift in mindset led me to change my college major and my long term goals in really big ways — neither quick nor easy, but oh so necessary — and to become an advocate of affordable healthcare and accessibility services to boot.

In 2019, after a long internal struggle about social media, I joined Twitter.* Eventually I found the disability community there. My people! People owning their everything. People fighting for accessibility, economic justice, dignity, respect — but not against themselves. Not against their disabilities. Or their defining conditions or illnesses. Not against who they are.

Embracing my identity as disabled and feeling welcome in a marginalized community has been key to my wanting to live and to live well as I am now. And becoming disabled and proud is a product of my collaborating with my Wolf.

The last five years presented so many significant life changes and challenges — serious illness and disability were not the only components of that big-ass iceberg*— that all together left me feeling unmoored and unsure who I was through much of it. Was I a dancer, still? Or no more, after 33 years? (33 years … It just had to be 33, did it?) What was my role now? What did I want to do? What could I do? Why does everything keep changing?

But now I have a new identity. One that embraces my current reality and enfolds my past roles as well. And a community. I have support. I can be disabled and proud. I can be sick and live well, which is so much harder to do than it is to say. Or type. But that’s all part of the learning, adapting, and letting go of collaborating with my Wolf.

So, I have a collaborator. Not the collaborator I wanted, to be sure. At times I still have difficulty fully accepting this rest-of-my-life companion. However, the more I do — the more I dive into the collaborative experience with my Wolf — the more I learn. The partnership allows me to explore my health and investigate what does and does not help me from that unique perspective. For example, I’m now thinking about my near lifelong sleep issues in a new way. Instead of trying to fit my problem into other people’s models, I have motivation and (dare I say it?) chutzpah to draw up something personal, bespoke, if you will. A combination of a rare sleep disorder, cyclical pain, hypervigilance á la PTSD, and behaviors I’ve adopted over the years that reenact (or attempt to do so) aspects of my childhood abuse. (That last bit may sound strange; however, conscious or unconscious, “re-victimizing” behaviors are not uncommon among survivors of childhood abuse. More on that in future posts.)

Likewise, I have started on a novel approach to the common and very frustrating symptom of brain fog. I’ll write more on that as I discover what works and what doesn’t. Allowing room for failure is vital! In a holistic sense, this partnership is deepening my understanding of some of my unconventional ideas about the practice of medicine from my days as a movement therapist. It has further illuminated for me the reactionary nature of our healthcare system that puts patients on the defensive. That incorporates shame in matters of disease avoidance and treatment, with a subtext connected to morality, sin, and redemption. I’m talking about so-called Western modern medicine and so-called alternative medicine both.

I’m still working this out. Or, trying to. Failing … Succeeding? Learning! Is that the space between winning and losing? Also known as Life?! That’s what this here blog is for, sharing my failures and thoughts and lupine whatnot. I don’t want to fight or be heroic or inspirational. I don’t even particularly want to be a fine example. I just want to be okay, as I am. Worthy. Disabled, yet worthy of consideration. And access. Accommodation. Even if I fail. Especially, when I fail.

Collaboration is the aim. Accepting the shifting sands, letting go, exploring unusual ideas, grieving, relinquishing harmful judgments, adapting, embracing vulnerability. Partnering with my autoimmune diseases promises a bumpy road ahead. And the potential for a life lived on my terms. And maybe a little enlightenment now and again. Which I will share with y’all.

In collaboration with my good Wolf, I shall howl!

One of the yuccas we care for showing off for the pollinators.

*Nor is lupus caused by an organism, as far as medicine knows. Just wtf lupus is — it’s hard to say, other than major malfunction of the immune system. “It” can “attack” almost any organ and system in the body. So it’s like the immune system is now under the direction of Snidley Whiplash? Or, Jared Kushner! My sincere sympathies for all good, decent people named Jared!

*I believe one doc thinks I’m a type of disease hoarder. Calmly practicing my hysterical magic, collecting ills for some ridiculous womanly reason. More on that in the future!

*@aqrobattz Do you get it? Well, do you? Huh? Do you? I mean, seriously, do you get it? Huh?**

**I apologize for the obnoxious neediness of that last footnote!

*Respectfully, aren’t all icebergs big-assed? (Asking for a friend.)

Superperfectionisticshamefilledprocrastinatious

And now for something completely different … kinda sorta maybe. When comparing similar things, my Aunt Lore liked to say a thing was “exactly the same only different.” So, yeah, it’s like that?

Three weeks ago I quietly went public with this here blog. My plan was to promptly add a Part 3 to my opening trilogy and scan in my hand-drawn logo, followed by an email campaign. Perfect!

But I couldn’t do it. I labored over Part 3 – in part due to a heavy brain fog. “Like pea soup,” is how my folks used to describe the thick fogs of my Pacific Northwest childhood home. Fact check: Fogs not nearly that green or smelly. (I hate split pea soup. Can you tell?) Also, I broke a tooth. It’s gone now, in its eternal resting place in molar hell. Grind in Power?!

I am a recovering perfectionist and I had me a relapse! Actually, my real addiction is to shame. According to Brené Brown, shame is the root cause of perfectionism and of much procrastination. I could find a link to BB … I’mma gonna let that go for now.

So, in the spirit of the following Sam Shepard quote, I may post other stuff before getting to Part 3: Collaboration means what now? (Non-working title)

I’m a great believer in chaos. I don’t believe that you start with a formula and then you fulfill the formula. Chaos is a much better instigator, because we live in chaos – we don’t live in rigorous form. –Sam Shepard–

The Duchess Draymond Pugbelly is ready for her romp in the snow!

Photo description: Adorable, black, short-faced dog wearing blue vest perched on closed SUV tailgate.

Collaborating with My Wolf (part 2)

The Lupus Foundation of America (LFA) dubs its members with lupus, lupus warriors. Being cast as a perennial fighter due to chronic disease is not just an LFA thing. I’m also a migraine warrior, according to more than one support site/online community. Although I haven’t seen similar troop-like nomenclature for my other ills (Sjögren’s soldier? Nope. Myositis mercenary? Nah.), the notion of being thrust into battle with one’s disease is pervasive in many, if not most, types of medicine, wellness, healing, adjunct support groups, etc. A diagnosis serves as an induction notice.

Assigning the role of warrior to folks with lupus and other chronic illnesses seems to work for a lot of people. If it works for you, I am sincerely happy for you! I have no desire to dilute or deny something that helps others. At the same time, it really doesn’t work for me. And I’m confident I’m not alone. Well, pretty sure. Kinda sorta … Okay, my neurotic tendencies aside, this is for all those other sick non-warriors out there.

As is the case for most people with lupus, getting to that diagnosis was a long slog for me. Three years before, I was diagnosed with dermatomyositis, a rare autoimmune disease of skin and muscle. And 7 syllables! Unaware at the time, I jumped into the warrior role. I was following expectations, if not orders. Medicine and wellness are designed around doing one’s individual utmost to get better, be well. Fight the good fight. It is your responsibility to procure the best medical care, provide for your changing needs, do the research (but be careful!), rise to the challenge and live right – eat, sleep, exercise, reduce stress just so. It ain’t easy. In fact, it’s so hard it takes the heroic efforts of a warrior. There are no guarantees. But there is the promise of “victory.”

So seductive! Of course I want to be healed, to feel better —and not just temporarily. Or at least regain some lost ground. I definitely want to be the good patient and do everything the right way. I’ve had more than my share of hardship,* so I know I can persist, can do hard work. And, um, yeah … I’ve fantasied about others recognizing my struggles, praising my fortitude. But after a couple tours of duty, I realized this mindset was a trap for me.

Because – and this is truly radical, in my opinion – there is no right or wrong here. Lupus is not my enemy. It is a mysterious disease process in which the immune system attacks healthy tissues in the body. While I like to anthropomorphize as much as the next guy,** there is no clearly identifiable cause of lupus (or my other diseases) like a pathogen to cast as nemesis, despite a lot of very good research. And my immune system continues to function as it is supposed to in some ways, while also malfunctioning. As we have learned in these pandemic times, the immune system is hella complicated!

No, I’m not going to start smoking cigarettes or anything clearly contrary to my living as well as I can. On the surface, not much has changed, really. But philosophically, I’m letting go of the notion that I have to fight to live well. I reject the idea that accepting my health as is and embracing my disabilities in order to best accommodate them is defeat. I’ve spent most of my life fearing I’ve done wrong, convinced I am wrong. I am so ready to be done with all that! I do not need to be anyone’s hero or inspiration. I just want to live well as I am. I accept myself as chronically ill and disabled woman living with my very own inner wolf.

One of our ornate box turtles takes it all in. (Photo description: Turtle with green head and red eyes, with neck extended, surveys environs.)

*Where do Hardship Shares get traded? NASDAQ? S&P? Why on earth did I stock up on those?

**Obviously, The Next Guy is your go-to expert when it comes to trading in hardship shares!