I wish I could say that I am just returning from a more than a year break from the internet, but that’s hardly true. I stopped fashion blogging in 2017 when I decided to run for office (State Representative: Did Not Win) and had to convince people that I am really serious and palatable. I deleted my tumblr, even. I was pretty serious about it.

Palatable is now officially over.

Everything about the world right now is fucking unpalatable so…what’s the point in being plain or quiet? There isn’t one.

After I lost my primary I spent some time recovering and started a huge new art project that will take years (especially since I’m not working on it enough right now). I started, for a second, a group I hoped would become a Political Action Committee and we had some meetings and got fired up and all that and……Then my oldest kid got fired from his job that he loved and then he got really sick.

Really, really sick. Endocarditis, undiagnosed for months (I guessed literally 4 weeks before they confirmed it), emboli to the brain (tiny bits of infection causing teensy-but-no-less-alarming-for-the-size strokes—“innumerable” is how they reported it), 7 hospitalizations in an 8 week period, a million ER visits and finally double heart valve replacement on February 11 of this year. So absolutely everything in my life stopped for that.

Then there was caring for him for the 6 weeks of recovery. And the dog had to have knee surgery so I had to take care of her, too (yes more knee surgery on a now two year old dog). Then, we went on a cruise my mother had planned for the whole fam damily and it actually took emotional energy I didn’t have to have fun because: I’m dead inside. Mostly. And that kid went back home but he’s still unemployed and broke up with his girlfriend and I’m exhausted. Really, “exhausted” should be a punctuation mark, like instead of a period each sentence ends with “exhausted”

So it’s likely no big surprise that I just lost my juju and am still feeling really directionless “exhausted” See? It kind of works “exhausted”

Then there’s the pesky issue of the world right now, and the death of Democracy and watching as my personhood and equality (which we weren’t even done getting, dammit) are, along with many others in other groups people like to be mean to, being dismantled. What do you do with your day when you are just watching the world in flames from your comfortable living room and you cannot find the person you were who ran for office who was tough and optimistic and ready to take on the world?

Maybe for the moment, the answer to that is write. Figure it out “exhausted” And then get my groove back, when I’m not “exhausted”

Reflecting on a Life Long Mid-Life Crisis

I will turn 48 this month and while I hate being typical, I am being typical in that it’s eating my lunch. In part, this is due to realizing that I will be less than 7 years from the age at which my father died. That’s a shocker, although really it is only math. I am no more or less likely to die at my father’s age than any other–and the women in our family live into their 90s. On my mother’s side. Which is the side I am counting. Still, my tendency to the morbid makes me wonder what it would mean if I had only 7 years left. 

On second thought, let’s not think about that. Delete file. 

There is a great deal of patriarchy-inspired baggage that comes along with aging as a female. On the surface, a trifecta of concerns: Loss of sexual attractiveness, becoming invisible, looking old. I spend a lot of time lately disliking my body for various and sundry reasons that include being “fat” (don’t freak out, I’m coming right back to that to explain), being “ugly”, being “old”. 

On “fat”….I am not fat. I know this. I am bigger than you think I am because I don’t show you the bits that are large. As I have delved into this consciousness-raising that is body positivity, I have found a secondary trap: I can, really, truly, completely honestly love just about anyone else’s body. But not mine. It’s a situation of “growth:but”. Does your belly bother me? No. Your ass? Your cellulite? No and no. Your varicose veins (Okay, let’s be honest, mine bother me and yours bother me because they bother me in general)? I am bigger than I would like to be is what I want to say yet, if I unpack it a bit more, what I come up with is that I don’t feel healthy or strong. I feel soft and weak and therefore, old–but not wise and wonderful. “Fat” is just a stand-in word for “I don’t like myself.” 

I compounded this by going to see Atomic Blonde this past weekend. That is a fantastic movie, btw, met and exceeded all hopes and expectations in terms of every possible quality.  It also, though, brought up that feeling that much of entertainment does: I cannot possibly ever be that impossible combination of skinny, flawless, strong, bad ass, warrior superhero female. (Wonder Woman, I am sorry to say, did not make me feel this longing at all, and I entirely blame the costume and the decision that she never once got dirty no matter what she was doing). How much do I want to be Charlize Theron in that film? So much it hurts. Which exists right alongside the reality that even Charlize Theron can’t be Charlize Theron in that film. 

I have long (since the age of 6) relied on a serious fantasy life that I discuss with no one but that has allowed me to steal away from reality and become something I am not. It’s intensely private, and I mention it here only because it’s a way of pretending to be the thing I am not and can never be. The person I pretend to be in my fantasy world aged along with me from about 6 years old until around 30, 35, hell, maybe she’s 40, but not in the way that *I* am 40. She is now sort of ageless (for a fantasy, I tend to be very hard on myself for some of my continuity issues, this is my cosmic ability to ruin something for myself for no reason other than to continue the process of criticism I was raised with–I can interrupt a whole pleasant episode by getting concerned that I haven’t attached an exact age, and am I being true to myself by imagining a younger woman, etc). I remember when I was little, I worried about the normality of this fantasy life, this serial pretend story that I “wrote” in my head constantly and tried to obliquely ask my mother about it (whatever “oblique” is for an 8 year old) and wound up being told it was fine to “play pretend”. This was not satisfying, and I worried and still do that I am utterly WEIRD and probably pathological. I have never raised it in therapy because I don’t want to ruin it with analysis. But. It’s those times when I find myself mourning the fantasy and finding fault with reality that I feel, well, like I’ve been poisoned by the false expectations and requirements for being The Right Way and am just perpetuating that with my fantasy life. I mentioned I overthink things, right? I do that. 

No one is Charlize Theron in that film. No one is my fantasy self. Nowhere are we taught to be satisfied with what we are right here in the world. I try to say to myself that my body, it’s doing a damn good job of just keeping me alive, especially since I’ve got a lot of extra damage since I didn’t even start out with a complete set of collagen–from the get go 35-55% of my body’s protein is flawed. I should be celebrating every day that I get up and walk around, right? Yet, there rises the image of Charlize Theron, gritty, bruised, injured, raising her perfect body out of a tub of ice cubes and then her body double (guessing) naked at the mirror and I feel exquisitely not enough as the reality of, say, throwing up because my bath was too hot last week tries to run alongside that. 

So, maybe, 48 will be the year that I get closer to closing the gap between who I think I ought to be because of a toxic culture and who I *am* despite it–and find a place to feel okay about it. To remember that no one is what we are shown we should be. To grasp that it’s okay, more than okay, it’s fantastic to be right where I am. The year I stop worrying what people will think of my (gross weak eww) body and just go forward, unapologetically, with the packaging I’m in. To look at my body without thinking gross, weak, eww, and to not even care if that’s what someone else (a 20 year old who fears aging and fights it with savage critique, for example) might be thinking. That’s a tall order, I know. I sense in myself, though, a growing weariness with buying into not being enough. I suspect that means I am getting wise, even as I worrry it means I am getting old and will soon start wearing orthopedic shoes and sweat pants. I’ll save them for 50; although that may be only to burn them on a pyre made of birthday cake candles. 

Feminism Tuesday: Bitch Magazine and Invisibility

[Note: I posted this on Facebook, where I am not very “out” about my health conditions, but it bears posting here, too]

The new issue of Bitch Magazine (Feminist Response to Pop Culture) has, as its theme, Invisibility. And on page 9 is an article about a woman being dismissed as female (crazy) when it turns out that she has the exact same alphabet soup that I do, with minor differences. I have Ehlers Danlos Syndrome (EDS), POTS (Postural Orthostatic Tacycardia Syndrome) and MCAS (Mast Cell Activation Sydrome) and there are doctors that don’t even BELIEVE IN SOME OR ALL OF THAT. There’s a local doctor who says “Baloney POTS”. I guess he doesn’t have wild swings in blood pressure and a tendency to get woozy upon standing up and an intolerance to exercise (I’m not lazy, shocking, I have a genetic disorder).

When I was working, I hardly ever talked about my invisible illness. It’s extremely complicated. I let people know that I had easily damaged joints and left it at that, reminding them that our disabilities aren’t anyone’s business but ours.

I did that in part because I got tired of suggestions and talking about it all the time (I have it, I don’t need to talk about it THAT much). Had I tried X supplement? What about Apple Cider Vinegar? Did I know about this device that so-and-so is selling that really helped your friend/sister/cousin/a lady on the bus? Could I change my diet? I know it’s hard when someone you know has something that has no solution, because shit, that could happen to you too, so you better protect yourself by insisting that if they would only drink Kombucha, they’d GET WELL.

I also got tired of explaining the related conditions, alphabet soup(s) that they are, and how actually, really, there’s not much to be done about any of it, and people don’t need or want to know about how much pain I am in today, or which joint is killing me, or that my back is out, or what my digestive system (rouge pirate that it is) is up to today, or if I was up all night with my heart racing, or my anxiety, or whatever the Issue(s) Of The Day Is (are).

Also, though, is what I got all the time from doctors, which was Diagnosis Female. Female=Anxious. Female=Pain. Female. Weird. Dunno, no exciting drugs, can’t help you. I’ve been fired by plenty of docs who just say they can’t help, have I tried counseling? (And yes, I see a therapist because I have a lot to carry around and it helps to have support, but she cannot fix my genes, sorry).

It takes well over 10 years (and for many with EDS) much, much longer to be diagnosed. I was 42, (and on my path to diagnosis a doubting doctor had cheerfully dislocated my wrists to see if it could be done and they never recovered entirely from that, they’ve hurt every day since then). I was already pretty sure, having spent years researching connective tissue disorders and realizing that there was this one that I really, really didn’t want; let it be anything but THAT one, so, that’s the one. But I had to spend WAY more time working out what was wrong with me than any health care professional had done at that point, and all I had to get at that point was expensive confirmation from a nationally recognized expert. It would have been much simpler for everyone and for me to accept my diagnosis as FEMALE and get on with it.

I’m telling you this because invisibility is a theme in my life, and I’m trying to be more visible. I’m trying to occupy my space. I haven’t been entirely well in years–maybe ten at least but probably longer, I just didn’t think the whole slew of random things were one giant related thing. So, if you think something is wrong with you, it is not that you are female. It’s that you are experiencing symptoms of illness, be it a disorder (which genetic things are), a disease (which people catch) or a syndrome (um……can be caused by a disease or genetic condition). This is hard right now, since being female appears to be thought by some to be a pre-existing condition (the only pre-existing condition here is PATRIARCHY, btw), so it’s only going to get harder to make yourself visible. The payoff may even be kind of low–you have all this shit, we can’t do anything about it, have you tried yoga (try not to punch them when they ask that if you are delicate like me, you’ll only hurt yourself)? BUT. I think being visible is better, in many ways, than being invisible. Because I read this article and had to come vomit out all these words, you know? To shout out to the ether at that article, “YES! YES! OMG, EXACTLY! YES, that’s IT! IT’S ACTUALLY NOT BECAUSE OF MY VAGINA!”

We live in a world that doesn’t know that. That’s the scariest part.

Go Home 2016, You’re Drunk

How to sum up this past year?

It began with a 7-page email from my co-worker (the other costume designer with whom I worked all day, everyday for 6.5 years) telling me why she didn’t think I “deserved” to hold the title of Costume Designer, why she was more skilled than me, how she was the one who hired me, how she had to compensate for my lack of skill, how she was more educated than me, and more. She referred to it as a “Tune-Up”.

None of that was true, mind you, but she chose to put it in writing and do something that couldn’t be taken back.

I considered quitting. Instead I filed an internal complaint and agreed to voluntary mediation and in a three hour meeting HR explained to her and our boss (who egged her on in her belief that she was superior to me) that she and I? Equals. Equally qualified. Equally skilled. Our boss was so unhappy he used the last five minutes of the mediation to chastise me for something unrelated to the issue at hand. Then he proceeded to spend the rest of the year ignoring the parameters set by that meeting.

I had developed heart problems the past semester (exacerbated by bullying on the part of my co-worker and clashes with said boss) and had to have heart surgery in June. Said heart surgery kicked off a series of 14 migraines that lasted into the Fall. In a follow-up visit, the Electrophysiologist declared the heart surgery a failure, and sent me to Austin for a second operation that, instead of happening, turned into a gigantic, epic cluster fuck and we went home without surgery and with no faith in medical science.

On my 47th birthday, I got up and took my beloved dog, Trixie, to the vet to have her put down. My husband and I agreed to no more dogs for awhile, and I didn’t anticipate there even being a chance to get a new one until summer of 2017, since I would be working. Trixie left a HUGE hole in my heart–she, like all dogs, was one-of-a-kind. As any of you who are spoonies know, pets are a significant tool in the chronic pain and mental health toolboxes.

I went back to work on time, but emotionally exhausted. Then the new FLSA regs hit, and our University chose to use that for a cover to commit some dastardly acts. At the same time, my boss, in flagrant defiance of the mediation agreement, removed me as designer for a show and cancelled my makeup class for Spring of 2017. I filed a retaliation claim. HR divided my complaints, delaying my retaliation claim and instead pursuing a reclassification that, instead of upholding my position, resulted in a demotion. The title of Costume Designer was taken away; it seemed I was no longer qualified. Then the title of Costume Shop Manager was taken away; still unqualified. Then I was made a Costume Shop Specialist, and told that the job “is yours” but on paper the qualifications were such that I wasn’t even qualified for my demotion. I wept in public for the first time in my life (outside of weddings, funerals and the movies, anyway).

On any given day, I have issues with my heart, my blood pressure, chronic pain, joint injury, back pain, anxiety, IBS-D and more. But I kept plugging away and giving it my all. But. My blood pressure got too high. My heart rate got to too high.My anxiety got too high.  I took extended medical leave and sought a new therapist to deal with my anxiety and trauma due to work. On December 12, I “returned” from FMLA  (I would have normally been off), and was told by HR that I had to meet with my boss, but that HR could not tell me when they might be able to get to my retaliation claim.

So I resigned.

Subsequent meetings with an attorney suggest that I have a 50/50 sort of very complicated case, and in this post-factual era, complex issues don’t sell. Also, I don’t want to spend another two years going through litigation for a small settlement that still won’t ever amount to an expression of sorrow and regret on the part of NMSU, my boss and my co-worker. They will just all have to live with themselves and their karma. They SHOULD be really sorry for what they’ve done, but we all know how that goes.It’s not necessarily illegal to be a complete, gaping asshole on the personal and/or institutional level.

There were of course good things this year, too. My daughter got married. Art Quilting Studio invited me to submit my work and published it in their Winter 2017 edition. I got a puppy since, it turns out, I’m going to be home full time for the foreseeable future. For me, 2017 will be about healing the trauma from a dysfunctional, shitty work situation and the bullying I suffered at the hands of someone who let their insecurities get the best of them. I have already lined up a show at a local gallery in August, and so things will move forward. Right now, it all feels uncomfortable, sad and weird, but I’m doing it anyway.

Always forward. Never back. (hat tip Luke Cage)


Feminist Friday: What You Do and Don’t Control

My life has brought me to a point where I the experiences I am having personally, internally, are echoed by what is happening externally. It is, frankly, a little terrifying. But I see the themes.One of them is the refusal of others to accept information about how I feel and what I experience. On a personal level, I am married to a man who didn’t learn good conflict management skills in his childhood. I can see why; his family is always looking to call you out as wrong, so he learned to admit no fault. This is problematic when I say, “What you just said hurt my feelings” and he gets stuck in a place of fury where he denies that my feelings have even been hurt, and much less that he did anything to cause that.

I have spent a lot of time explaining that he is missing the point. You don’t get to decide if MY feelings are hurt. You have no control over that. You have control over how you respond to my hurt feelings, but the place where the disagreement is located is not whether or not my feelings were hurt in the first place. You can say you didn’t mean to hurt my feelings, you can ask what happened that hurt me, you can explain that you had no intention of hurting my feelings, but you cannot say that my feelings weren’t hurt. Unfortunately, he gets stuck in that defensive place and it is expressed as a withdrawal of love and affection because I have had the audacity to wrongfully accuse him. We’re working on it.

This is the exact same experience many women, LGBTQ folks, minorities, etc have when they try to speak of their realities. A male relative has told me on Facebook that my response of fear about increased violence against those people Trump has targeted is invalid. Again, he locates the argument in the wrong place. He has no control over how I respond to the world in which I live, and he has no ability to even understand the world in which I live. He is a white male. He cannot say that I am “over-reacting” by carrying pepper spray. A true exchange of ideas might include, “Why do you feel so fearful?” I could then explain and make a list of all the reasons. And he could certainly respond that he doesn’t think those are good reasons, but he can’t control how I feel. We could argue all day about whether or not a man pulling up in a car next to a female pedestrian and jerking off as he cruises by is good or bad or indifferent, but there is no argument about how it feels to me to experience it (which, by the way, is threatening and predatory and it makes me wish I carried concealed).

Women’s realities remain their realities whether someone else believes them or not. The experiences of the disenfranchised are theirs, and not open to denial, because they are real. The question that can’t be answered is, “Why, if I say to you that I am hurt/scared/fearful/anxious about this situation, is your response to that to be angry with me?” Are you saying that you want me to have these feelings? That I deserve them? Because they are real, and the way forward is for you say, “I love you, and I don’t want you to feel this way, what can I do?”

For some reason, that admission is terribly threatening. That’s the part that needs fixed before we can even begin to have a realistic conversation. That’s where the problem is; not with me voicing my reality.

Feminist Friday: What Constitutes Strength

This strong woman must be vague, but what I want to talk about is the notion of strength in patriarchal system.

A sampling of popular entertainment in the media makes it clear that battles are to be fought, not avoided. Self-sacrifice; be it mental, physical, etc, is rewarded and encouraged. As a young nation, we still idolize the mythology of the Wild West, wherein you don’t ever give up. Strong men shoot weaker men, strong women manage through the worst of privations. You bite the bullet, the leather strap, haul yourself up by your bootstraps, keep going, never surrender.

Yet, I am finding, there is strength in surrendering. Die fighting, or walk away from a battle one can’t win? Figuratively or literally, sometimes self-preservation depends on detaching. Often, the process of detaching is far scarier and emotionally risky-seeming than continuing to fight. Conflict generates energy, and sometimes that energy is good and launches you forward. Other times, that energy is toxic and damaging even as the overlying message is to continue to drink from that cup.

Detaching is an act of wisdom, self-knowledge, control and strength, but we have trouble seeing it that way because we have had stuffed down our throats the toxic masculinity model, coupled with religious doctrine, that suggests martyrdom to be the true expression of power. Recognizing that you are right, even if that has gone unacknowledged, frees you to step out of the role of martyr and into the role of taking care of yourself. Something that, in a patriarchy, is a form of bravery in and of itself.

Feminist Friday: No Protection for Strong Women

I have to be a little vague, here, as I am in the middle of some things. I learned, yesterday, that there isn’t any legal protection for “strong women.” What that means is either someone discriminates against all women, or there’s really no legal standing. I understand that. There aren’t laws against being an asshole, either, at least in a general sense.

Reflecting, then, on last week’s post, I would suggest that this is what makes being a strong woman even more challenging. Being a strong woman is being a pioneer of sorts–it’s a novel thing, it’s a rare thing, and thus being one will not only attract attention, but also backlash. I’m not the first strong woman, and there have been strong women as long as there have been women (so: Always), but they have never had it easy. Maybe it’s just that one’s refusal to couch their opinion in qualifying language means they go unheard or dismissed for being “shrill” or lacking a “sense of humor.” Maybe it’s just that the girls who don’t modify their voice and drop their eyes don’t get the smile from the instructor. Or, maybe it’s that one is threatened online for suggesting that men are the only people responsible for rape. Or told they can’t wear white for their wedding because they aren’t a virgin, or no longer invited out for drinks because they objected to a rape joke. It goes on and on.

It’s a hard road a woman chooses when she chooses to be strong. She will be forced to deal with a lot of hostility, passive aggressive and aggressive-aggressive behavior. She will constantly be fighting; tiny verbal disagreements about the concept of TOTAL bodily autonomy or pointing out what it means when someone says “screams like a little girl” or saying that it isn’t necessary for a co-worker to define her by her reproductive status. A million billion little battles. Then there are the bigger battles, and sometimes there are violent ones.

Women whose survival strategies include accepting the status quo and/or developing a sort of Stockholm Syndrome with their oppressors will see the strong woman as much as an enemy as many men do. At best they might be your friend but say, “Well, I know you are right, but only YOU could stand up that way.” Even when the strong woman is sobbing in her car because not even her sisters are standing up with her, and she must carry the entire load on her aching back. It would be so much easier with help.

Ultimately, though, strong women really can’t stop being strong. It would be like trying to un-know something, like that the sky is blue. There’s no getting away from one’s nature. There’s no closing your eyes once they are open. To every strong woman out there, I salute you. Cry in your car. Scream when you are overwhelmed. Know that you are making a difference, know that you are not entirely alone. Because, there’s at least one other one, and maybe your actions are the spark that starts to awaken another one from her slumber. You are doing the right thing. Also, though, you cannot do it all. You must keep self-care at the forefront. The battle is not just your responsibility. Do your part, but don’t sacrifice yourself for something no one will help you with. Do what you need to do to live with yourself, but there’s no reason to die trying. Your sisters need you, and you deserve to rest and recover before heading back out into the fray.

Feminist Friday: Thoughts

I have a lot of thoughts to collect today. I read this article and thought about how most of my life, I’ve been that annoying bitch who constantly calls people out for sexist behavior. I stand up when other women can’t or won’t because they are in that minimizing place or scared, etc. I flip off that guy that drives by making kissy noises at me. I refuse to smile at the asshole at the grocery store who thinks I come in so he can talk to me about my hair. The other day the UPS guy sort of snuck up on me at work, saying, “Boo” from behind me. I told him that was a really bad idea, to sneak up on a woman at work, and if I’d been at my other desk he’d have pepper spray in his eyes. I said it with a smile, but I could see his opinion that I’m a humorless shrew percolating in his head.  Or maybe part of him realized that he had done something thoughtless and stupid.

When I was in high school I worked at Peter Piper Pizza, and we hired this manager who was shorter than me (I’m tallish, 5’9″). When he would ask a woman to do something, he would touch her at the same time. He asked me to do something and put his hand on my shoulder. I told him that I didn’t think it necessary for him to touch me to do his job and to remove his hand forthwith. The next day I was called in the General Manager’s office. He asked me to sit down, and they both stood up (an obvious tactic to intimidate me and make the short guy feel more powerful). The GM told me I needed to apologize to the other guy. I said I would do no such thing, and his Short Man Syndrome wasn’t my problem, and unwanted touching is a form of harassment. The boss demanded I apologize again. I took off my apron and cap and walked off the job. It was my 17th birthday.

I worked as a dental assistant for a horrible dentist. He refused to wear gloves, we threw all the infectious waste straight into the dumpster, and he required us to dress up for work. Like really dress up–and if it was sexy, fine. One day a patient in the chair said something about how nice I was and what a good assistant and the dentist said, “Yeah, and she’s got those lovely things on her chest for you to look at!” Afterward I said, “That’s not appropriate. Please do not talk about me that way.” He actually defended himself by saying that I should see him as “that dirty uncle, you know, you put up with him because he’s harmless.” I refused. He docked my pay. I filed a complaint with the labor board and they made him repay it. Then he cut my hours until I left, because I was pregnant and could never afford a lawyer.

A few times I’ve laid down and not called something out; a friend got me a job at a dentist’s office that I really needed. There were two dentists there; one who was bothered by me being taller than him (seriously, I never understood that and I’ve been happily married to a short guy for 20 years now) but also let me take breaks to nurse my son. The other dentist was older, the owner of the practice. One day he walks in, and pats each of us “girls” on the ass as he says good morning. As he left I looked at my friend and she said, “We all weren’t sure what YOU would do, but really it’s harmless.” Subtext: Don’t fuck this up for the rest of us. I let it go.

A little over a year ago, I sat in a courtroom next to a student’s mother. The student had reported to me that a man who came into our classroom had stalked her two years ago and she had gotten the police involved. Now he suddenly appeared in our space. When he tried to walk back in I ordered him out, brooked no argument (he was clearly very angry) and called the police. I backed that student all the way, taking a day off work to go to a hearing that was cancelled at the last minute, taking another day when it was rescheduled. Sitting next to her mother, we watched as the man’s lawyer said the most terrible things we could imagine to this young woman. He asked her if she was afraid of men. He said that he could see that she was attractive, and his client was attractive, so what was the problem with her? Did she know how much trouble she was making for this young man who did nothing wrong? It went on and on, and I think only by sitting next to each other did her mother and I remain in our seats and not leap over that rail and beat that man down to protect this student. It took months, rescheduling my vacation plans for a hearing that was cancelled by the criminal’s lawyer, all of us wavering and wanting to give up, before finally a no contact order was issued and she was free of this burden.

All along I told her, you aren’t doing this just for you, and you aren’t doing this because it will for sure work out the way it should. You are doing it for every other woman this man will cross paths with in the future. You are doing it for all of us, because you are part of a process and even if we lose (and at times it seemed we would and he would walk away), the process will roll on, and the next woman is that much closer to winning. Otherwise, it felt hopeless. It felt too hard.

I’m in the middle of another thing, right now, and I can’t talk about it, but I can say that being the one who stands up is hard. It’s exhausting. It feels hopeless, it impacts my health, it’s lonely. I have moments when I wonder, “Why am I doing this? Why don’t I just walk away, let it go, move on?” Because I can’t. Because:Other Women. Because I have a daughter and she has two daughters and because I teach other people’s daughters and I am modeling something for them that they need to see. I am modeling Doing the Right Thing, but also, that Doing the Right Thing is not like it is in the movies. The moments where one is galvanized by righteousness are few and in between is doubt, anxiety, headaches, not sleeping, pounding heart, crying, loss of motivation and all that other stuff that happens when we are in a very stressful situation. Self care is both more important and harder to do.

But, just like I told my student, I’m not just doing this for me. Even if I lose, even if I don’t prevail, it won’t change that I was right, that I stood up for what was right, that I modeled that for other women. That on the next go-round, someone will get a few steps further than I did. At least there will be that.

All the Horror

Where to start? Where the Electrophysiologist in El Paso told us, unequivocally, that the June 10 ablation had failed and the *only* recourse was to go to Austin to see the Number One Guy.

Then there was a lot of bullshit with the Number One Guy’s office, detailed here previously. Go find it, I’m not up to linking.

Then the NOG’s office called Monday. I mentioned the following: Very very anxious, taking Xanax three times a day. Also very worried that I wasn’t feeling the PVCs. “Oh, hon, don’t worry, he’ll be able to induce them.”

I set down the biggest burden I was then carrying.

We go to Austin. Nine hour drive. Check into our hotel (special medical rate of $109 a night, expected 5 night stay). The next morning at the NOG’s office, the EKG shows that I am not having any PVCs.

This was my WORST FEAR. NOG is vague. It goes like this:

NOG’s PA on the phone last week: So, how’re ya doing?
Me: Well, anxiety’s pretty high, actually.
PA: shore, shore, hon, that’s to be expected.
Me: yeah, taking a lotta xanax, and actually, and I’m sure this is anxiety speaking, and I know you are busy, but, I just have this paranoid fear that I’m not having the PVCs as much or at all? I should probably just take more xanax, right?
PA: Oh, don’t you worry, doctor will just induce that rhythm.
Me: (SO RELIEVED) oh, okay, great.
Fast forward to today (a 9 hour drive and $109 a night hotel later):
ONE SECOND before Doc walks in I say to Husband, “Let him not say I am not having PVCs or that it’s up to me what to do”
Doc with not much warmth: So, you aren’t having any PVCs. [a bunch more other horseshit] It’s basically up to you. So, let’s get you pre-registered.

At Admitting:
Nurse: blah blah blah
Chuck: (in the hallway on the phone with my mother agreeing that this seems like a bad idea)
Me: (babbling emotional diarrhea) so don’t know what to do, thinking of just bagging the whole thing, feel like an asshole…
Nurse: are you taking anything for anxiety?
Me: Xanax, 3 times a day.
Nurse: that can suppress PVCs. Let me call anesthesia AND pharmacy to confirm that. Yep, that’s a fact!
Me: can you ask my husband to come back in here?
And that’s how we spent a day in Austin walking uphill in 100 degree (plus humidity) heat, drinking coffee with wine, carrying a 1963 Enid Collins purse that caused people to stop and worship, sobbing about being an asshole, and planning to give a hospital over $3000 the next day for a heart that might not perform. Modern medicine.

It is medically very dangerous to abruptly stop Xanax. So I was up all night that night, sleeping about 1.5 hours. By the time we reached the hospital I was manic, clenching my teeth, paranoid, and crying. We were scheduled for a 7:30 go. Things they didn’t tell me: any emergent case coming into the hospital would be put ahead of me.

They didn’t take me back until around 11:30.

Once in the lab, which is a huge room with a HUGE screen, there are a lot of people, and I’m naked (I ultimately get a blanket). they are putting a million goddamned sticky connectors on me; some huge, many small. they are exposing one boob, then the next boob, then my ass, etc, etc. Finally I am strapped down into an immobilizing thing–arms packed in foam and tied down, legs the same, head/neck the same, and an oxygen mask strapped to my face. Then they all walk away, and the board starts showing all these stats.
They give me a drug to slow my heart rate to induce PVCs. It takes forever, I can’t move my head. I don’t know what the board things mean. I keep feeling out of body (Xanax withdrawal, exhaustion, stress). My blood pressure is 157/109, higher than I’ve ever seen it.  I feel like I need to pee and it’s freaking me out. They won’t give me anything to calm me down. (I was obsessed that my crotch smelled bad, and they’d all smell it and talk about me being disgusting). So it takes forever to slow the heart rate, and people wander in and out of the room, and say things like, “Nothing happening yet?” Um, I don’t know. But thanks for making me feel like I’m not performing.
After awhile they say they are going to try speeding my heart up. I react to that drug really fast, and my heart goes up to 165 in about 10 or 15 minutes. It felt like I was going to watch my heart burst from my chest. Finally, the cocksucker expert doctor comes out and says, “We’re not seeing anything, so there’s nothing else to do.” Twenty more minutes are spent unhooking me, naked, in a big room with people still coming in and out. Then off to recovery, but they don’t go tell my husbnd anything. I wait in recovery for about 45 minutes before asking them to get him. He finally arrives, thinking it was a full procedure, so I have to explain to him that no, it was a negative study.
THEN, my (male) nurse, seems to feel that my being angry and frustrated means he needs to stay in there and mansplain PVCs , and  “my own theory” and some tale of his kid cutting his finger camping and I am thinking, “GET OUT. GET OUT. We haven’t even talked about this, GET OUT.” Finally we are released and I cry for the next hour and a half. All the way back to the hotel. Sitting on the couch in the room. The spouse hands me a xanax and a glass of wine and then steers me to bed. I cry until I sleep for about 2 hours. Then he gets Korean food and we watch the (lame) Opening Ceremonies and crawl back into bed before the sun goes down.
Then we drive home, nine long hours, and fifteen minutes after I get home, I have an aura. Then another one. Now, nothing has gone numb and no headache, but…..hard to trust.
What remains:
Maybe my heart was fixed in June and the El Paso doc jumped the fucking gun and cost me a LOT. A LOT.
Maybe the Xanax was still affecting it and now it will come back, sometime, don’t know when.
I have to find a way to safely go off the Xanax.
I really, now, have no medical team.
Everything else seems fucked up.
I have very, very little coping skills left.


The Point of Done

I’m done.

I’ve had 7 migraines since the ablation on June 10th, one 3 hours post op.

Yesterday I had one, napped, then had another one. Aura, laser-light show for about 30 minutes, then some part of me goes numb for up to half an hour, then finally comes back to life, then I get the nausea and headache. Twice. Two times.Dos.


I called my EP’s office and they denied it might be related to the ablation. I made the idiot medical assistant ask him twice, stressing the other doc said it might. He still said no, call your PCP right away.

So I did.

My PCP came by (housecall!) and brought me orders for an MRI of my brain.

This morning I had a fever and noticed a fine rash like little dots of blood below my skin on my legs. I sent my PCP a photo of said rash.

Last night he gave me a log in to the secret, Medical-Professionals-Look-Up-Stuff website so I looked up the rash and fever and it said Endocarditis and that’s bad. It also said you might have a sore throat (went to him for that last week) and a red, hot, runny sore (GROSS)–mentioned a go with something odd like that, too, that became Mt. Vesuvius in my neck suddenly for no reason.

This all means nothing. Or not. I dunno.

But you know what? I refuse to do anything else about it. Fuck it. Fuck. It. I have reached the end of the medical rope by which hysterical women are dismissed and patronized and not heard and not engaged with and I. Am. Done.

My husband said, “Do you want *me* to call…” and I screamed at him no. No, I will not make ANOTHER DECISION. Not for me, not for you, not for what you should do for me, FUCK IT. Figure it out. Wander blindly through the shitty, hurtful forest that doesn’t take you seriously like I have been.

I am no longer directing. The actors aren’t in costume except the ones wearing underwear on their heads, they have broken key bits of the set, the costume designer has changed the color scheme to pink, the set designer infected all sharp edges with rabies, the lighting designer is using sun lamps and the stage manager is a mime. We open soon? It’s important? Fuck. It. Someone else deal with these fools.

If I’m right, they can inscribe it on my tombstone. If I am wrong? I’m sure they’ll put it in my permanent record and tattoo “hysterical” on my forehead. I understand how this game is played, now. I get it.