I Stand Here Sobbing

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It’s a few weeks ago. My workplace hosts a Benefits Bash. You know, one of those events where the health insurance people and the life insurance people and the college savings people and the benefits team and whoever else gathers together to hand out info on the next year’s plans.

They try to make it fun. The room is full of giveaways, like stress balls, pens, and notepads. They have refreshments. It’s kind of a hubbub as folks mill around, pick up information, and socialize a bit.

Except for me.

I stand sobbing at the prescription plan table.

My workplace announced we’ll begin a new prescription plan carrier on 1/1. This is part of their effort to stop mounting healthcare premiums. They hoped this would be a completely “neutral” change with no ill-effects.

But in the middle of the Benefits Bash, I find out the new plan “excludes” my husband’s major medication for his Young Onset Parkinson’s.

First, lemme give credit where it’s deserved: the benefits people at my workplace are kind. The prescription plan people are kind. The benefits brokerage people used by my workplace are kind. There is an appeal process and they will help me through that. Hopefully, the medication will be approved in the long run.  Even if the drug doesn’t get approved, the drug manufacturer may be able to help us with expenses. No one switched prescription plan carriers in order to make things harder for me or my family.

But.

But, but, but.

None of that matters as I stand here sobbing.

(Yes, intentional references to Tillie Olsen and Nancy Sommers.)

Gary was diagnosed at the age of 30. Now, he’s 37 with advanced Parkinson’s Disease. None of you want to hear the litany of symptoms and issues that have accompanied his PD.

You really don’t.

Parkinson’s Disease kills the brain cells which produce the neurotransmitter dopamine. Without dopamine, your brain has a really hard time relaying messages to control a whole bunch of things–movement, digestion, sleep, etc. Lack of dopamine also plays a role in depression and apathy.

So, the main medication people with Parkinson’s (PWP) take is some form of levodopa/carbidopa. Levodopa is absorbed in the brain and changes into dopamine. You need carbidopa in order to prevent the levodopa from being broken down in the bloodstream, so more of it can actually reach the brain.

Rytary is a special combination of levodopa/carbidopa and it’s the drug Gary’s been on for years. Until now, it has cost us $60 a month.

Out-of-pocket with no insurance, it costs about $1,500 a month.

$1,500 a month

$18,000 per year

$18,000 per year

$18,000 per year

(Okay, I just wanted to make sure you saw that.)

The new prescription plan will cover other formulations of levodopa/carbidopa, so that’s why they don’t cover Rytary. But here’s the thing:

  • “Regular” immediate release levodopa/carbidopa is absorbed very quickly in the body and then used up. This results in dramatic on/off times. You have too much dopamine and lots of dyskinesia (involuntary movement), then it wears off and you have not enough dopamine, so you experience dystonia (muscle cramping) and bradykinesia (slowness/stiffness). It’s up, down, up, down all day long with some good middle periods sandwiched in there.
  • “Regular” extended release levodopa/carbidopa releases slowly over time. This means it takes a LONG time for the effect to be felt and you might be “off” for quite a while before managing to feel good during the days, even when you’re taking the extended release formula before bedtime. Overall dopamine levels tend to stay lower even once the levodopa/carbidopa has reached it’s full efficacy.

Rytary combines the immediate release levodopa/carbidopa PLUS 2 different types of extended release levodopa/carbidopa. The 3 types work together REALLY well to give a very smooth day. Just enough dopamine to feel good right away, not so much that it plummets before the next dose. Gary has the best results when he takes Rytary 4x/day–it’s the smoothest we’ve ever been able to get his physical symptoms.

(If anyone wants to geek out and read some supporting research.)

So. That’s why we need it.

Hopefully it will get approved.

Hopefully, hopefully, hopefully. 

The worst part? We can’t even begin the process to get Rytary approved until mid-December at the earliest…and possibly until January 1. We are going to have to cross our fingers that the process moves quickly and we can get answers (HOPEFULLY APPROVAL) before he runs out of pills in mid-January.

(What if we don’t know by then? Stop worrying, Sarah. You’ll figure it out. Right? Tell me right. )

But even if it DOES get approved? Here’s how this has already impacted us.

– I’ve spent hours discussing our situation with multiple folks from benefits, from the prescription plan, and from the healthcare brokerage people.

– I’ve spent a bunch of time investigating whether we should drop Gary from my insurance and try to get him on a Medicare Rx plan. Not sure which of those plans might cover Rytary–do any? But here’s the kicker: open enrollment for a Medicare Rx plan ends in December, but we won’t know about this until January. We don’t want to drop him from my insurance unless it is absolutely necessary.

– Stress. Stress, stress, stress. So many what ifs and then whats. So many uncertainties.

– I’ve wondered if I should be looking at other jobs. I love my current job. LOVE. But…if we can’t figure out a way to make this work, I can’t afford $18,000 a year for a medication. And I also can’t bear to see Gary live with a lower quality of life than he has now.

There are days we barely have enough spoons to get by with his current quality of life. I can’t imagine how much worse it could get. (Except I can, because we’ve been in worse phases of this stuff. I just…really don’t want things to get that bad. I’d say I’m not sure I can handle it, but I always manage to find a way to handle it. But. Please, no.)

– Lots of tears. I’ve spent quite a bit of time crying about this already. In fact, I have a hard time talking about it without crying. I cry out of worry and fear, I cry out of anger. Not anger at any individuals, but anger that our system allows for this. I cry because I’m kind of embarrassed about crying about it in front of people who are trying to be kind–and then I cry because I’m mad at myself for being embarrassed about it, when this is a situation that warrants strong emotion.

NO ONE should have to worry about losing access to a needed medication.

NO ONE should have to possibly pay $18,000/year for a medication. How is that even a thing? Seriously…how is that possible?

I have a very good job with a very good employer and we purchase the best healthcare plan they offer.

Our healthcare system in this country is BROKEN. 

Utterly broken.

The unseen hours of work and research and stress about things like this have a HUGE impact on care partners, people with disabilities/diseases, and our families. I have a piece on care partners coming out soon in Disability Studies Quarterly; I’ll link to it here when it’s available.

So. I’ll keep you all updated. I’ll hope for the best.

But I wanted to use my voice and my situation to illustrate that OUR HEALTHCARE SYSTEM IS BROKEN.

Thank you for reading and caring.

Love (Even if I Don’t Remember the Color Feather in Your Hair)

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Picture of a crying baby. (Not one of mine.)

I’ve been reflecting on parenting a lot lately–how it changes as your kids grow. When they’re little, parenting is an exhausting slog of meeting physical needs. Do you remember the sleep deprivation? The agonizing over whether to feed them rice cereal or sweet potato first? The constant vigilance over their safety as they learned to move about the world? The tears and the smiles. The sleep deprivation–did I already say that?

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Three colorful plastic dinosaurs, one holding a sign that says, “Howdy.”

Then come the toddler years, full of play so alternately-wonderful-and-agonizingly-boring I often wondered if I could gouge my own eyes out with a plastic dinosaur. My daughter used to spin elaborate “role playing” scenarios: Mama, I’m going to be a mermaid and I have medium brown skin and a green tail with kind of aqua scales right on the tip and I have long flowing hair that’s braided with an orange feather and I have some purple flowers right here and then I have bras made of orange and purple seashells and my name is Cassidy and I have a pet dolphin named Banana who is blue with a shell necklace. Mama, are you listening? Well then, what color feather do I have in my hair?

Elementary years: where kids make friends and lose friends and experience the joys of school and the boredom of some-parts-of-school. My kids first experienced being left out on the elementary school playground. My daughter was surrounded by other girls and grilled/taunted. My one son was told to “man up” and not be “too sensitive.”

As they get older, I found parenting focused on allowing them as much independence as possible within a structure that set boundaries. They learned to express themselves, and tried all sorts of behaviors and activities. I did lots of modeling relationships, lots of discussions about identifying emotions and acting on them appropriate. Lots of listening.

My three kids are all tweens and teens now, in middle school and high school. Two of my kids are taller than I. One of my kids is dating for the first time. All of them have friends I haven’t met yet. Each of them still needs some boundaries and reminders–that’s enough screen time, did you brush your teeth?, drop that tone of voice and talk to your family like you love us–yet each of them yearns for more freedom. So what’s my role as a parent now?

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A parent and child walk on a beach at sunset.

I want to be the safe place they can bring anything and everything.

I want to be the person who will always listen and believe them.

I want to be able to share my own experiences in ways that are helpful, but to always remember they are their own people with their own ways of solving problems and thinking about the world. I want to give them that space.

I want them to start seeing me as a person, not “just” Mom.

I want them to understand the richness of our authentic selves. I want them to know IT GETS BETTER. After these teenage years–these hard, hard teenage years–it DOES get easier to be your full and authentic self.

I want them to know I understand how hard these years are. And I’m here, no matter what comes next.

I want to be fully present, fully loving, fully safe.

I want to hold them close, even as I hold my breath and watch them walk away.

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A simple red heart.

 

I Am a Lot

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I feel things strongly. My emotions are intense. I am intense. My heart is full to bursting most of the time and often with a slew of competing-and-equally-strong feelings. I care intensely and immensely about people and issues and issues and people and all things.

We live in a world that tells us emotions are a weakness, that rational thought and logic and reason are the highest human achievements, that caring is somehow less cool than aloof objectivity.

Why?

Emotions are gendered feminine by our culture. We talk about women’s intuition. Women are assumed to be empathetic. We believe in motherly instincts. Our culture links women to nature, to animals, to children–to things that operate on gut instinct instead of intellectual arguments.

In 1972, Sherry Ortner did a fantastic job deconstructing some of the reasons for this in “Is Female to Male as Nature is to Culture?”–an article which draws on the work of Nancy Chodorow. She shows women are socialized to prioritize relationships and the subjective experience, while men are socialized into the realm of the objective and the abstract. Because our culture ranks the masculine above the feminine, we therefore believe that the objective, abstract, rational, logical, constructed is somehow more important than the subjective, relational, emotional, passionate, natural. That article is almost 50 years old, but I find her arguments still valid.

I’m thankful for a recent post by Captain Awkward which introduced me to Melissa McEwan’s essay “The Terrible Bargain We Have Regretfully Struck.” (Side note: if you aren’t reading Captain Awkward, what are you doing with your life?? No joke.)

Read this excerpt from McEwan:

There are the occasions that men—intellectual men, clever men, engaged men—insist on playing devil’s advocate, desirous of a debate on some aspect of feminist theory or reproductive rights or some other subject generally filed under the heading: Women’s Issues. These intellectual, clever, engaged men want to endlessly probe my argument for weaknesses, want to wrestle over details, want to argue just for fun—and they wonder, these intellectual, clever, engaged men, why my voice keeps raising and why my face is flushed and why, after an hour of fighting my corner, hot tears burn the corners of my eyes. Why do you have to take this stuff so personally? ask the intellectual, clever, and engaged men, who have never considered that the content of the abstract exercise that’s so much fun for them is the stuff of my life.

There is the perplexity at my fury that my life experience is not considered more relevant than the opinionated pronouncements of men who make a pastime of informal observation, like womanhood is an exotic locale which provides magnificent fodder for the amateur ethnographer. And there is the haughty dismissal of my assertion that being on the outside looking in doesn’t make one more objective; it merely provides a different perspective.

And Captain Awkward’s recap:

I think about this “lady emotions are dumb, man logic is superior!” fallacy all the time…

Feelings are just one kind of information. Experiences are extremely informed sources of information. They are not the only information, but they aren’t not-information, either? They have a part to play.

What if we acted like the the people most affected by something/who have the most at stake/who have the most to lose/who have been the most fucked over by the status quo are the center of where our caring should go and the primary experts on what would fix things, but on like, a national or even global level? And what if caring for them was way more important than our “objective” debates about what they need and deserve?

In the meantime, the idea that “your emotions and your experiences with a thing make you uninformed and unqualified to talk about it, but my emotions (that I have renamed ‘logic’) and my lack of experience with a thing make me more informed and qualified than you” is a brand of bullshit that I will be fighting until my dying day, one really really long blog post at a time.

I’m reminded of my intense reaction to Wonder Woman, which I blogged about at the time. As I said then, “This movie stars a woman who stands for idealism, caring, a belief in love, a belief in the power of beliefs–things which, personally, I have been MOCKED for (and I’m not alone)–and turned those things into a portrait of strength, empowerment, and respect.”

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It’s not better to be objective than emotional. It’s not better to be rational and distant than to be passionate and personal.

On 10/23, Lin-Manuel Miranda tweeted:

Gmorning
“You’re a lot
You have no chill
You’re so extra”
These are all COMPLIMENTS.
Apologize for your passion
on the day after f***in’ NEVER.
Let’s go!

I care about “too many” things. I can’t focus my desire for equity and justice on just one issue. I truly believe “there is no hierarchy of oppression” and we must band together to end all oppressions before making any change in this world. I don’t always know how to make change, so I write and I teach and I hope I can make enough small differences in enough people’s lives to matter.

My whole life, my biggest fear has been that I’m “too much.” I fear overwhelming people with my energy, my passion, my intensity, my sincerity, my thoughts, my words, my voice, my caring. I don’t stay in my place. I don’t act like a lady. I don’t stay quiet.

In my 40s now, I’m finally owning it. My husband once said to me, “You’re a lot, but you’re never too much.”

I am a lot. And I will use my “a lot” to change the world in all the ways I know how.

 

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Image from Hyperbole and a Half, which you really should read if you haven’t. Caption says: “I care about this Alot” and the image shows a brown hairy beast with horns–the Alot–being hugged by a person. Note: “Alot” isn’t a word. It’s “a lot.” 😉 http://hyperboleandahalf.blogspot.com/2010/04/alot-is-better-than-you-at-everything.html

 

“I Don’t Weigh.”

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“Oh. You don’t?”
:laughter: …. “Hold on, are you serious?”
“Does your doctor let you get away with that?”
“What do you mean?”
“I’ll get in trouble if I don’t get two vitals for you.”
“I’m with you, honey. Now get on the scale.”
“Wait. What?”

For the past 18 months, I’ve refused to step on the scale when I visit a doctor’s office.

I’ve seen a number of different doctors during that time period–my endocrinologist, my regular doctor, my OBGYN, the university health center doctor, maybe more I’m not thinking about.

Each time, a nurse takes me back and says, “Step on the scale so we can get your weight.”

Each time, I say, “No, I don’t weigh.”

Each time, there’s been a moment of double-take, as if the nurse isn’t sure exactly what to say next. After a moment of confusion, either they ask why or they awkwardly move to the next segment of our appointment, usually taking my blood pressure.

When they ask why, I explain:

Because the number on a scale doesn’t actually tell you much about my health.
Because I’ve been surrounded by people struggling with eating disorders.
Because now I know even more about eating disorders and how toxic our weight-obsessed culture is.
Because I know dieting is the number one trigger for developing an eating disorder.
Because I believe in Health at Every Size.
Because I believe in intuitive eating.
Because numbers don’t help me love my body.
Because all my clothes fit, so I know I haven’t had a drastic weight change reflecting a medical condition.
Because I’m here to talk about XYZ issue which has nothing to do with my weight.

Would I step on a scale before an anesthesiologist decided my dosage before a surgery? Hell yeah, I would. Would I step on a scale if my endocrinologist was worried about my thyroid replacement levels and needed to confirm weight loss/gain? Yup.

Do I need to step on a scale to get a culture for strep throat? Or diagnose a sinus infection? No. No, I do not.

I’m not of a size/weight/shape where doctors routinely chastise me and blame Every Single Health Condition on some ill-formed “need to lose weight.” I know that struggle is real for many people.

I’ve chosen not to weigh as a protest against a system which fixates on weight as synonymous with health (it’s not). I refuse the scale in solidarity with my sisters and brothers for whom numbers lead to dieting leads to eating disorders. I refuse the scale to empower others to refuse the scale.

Join me?

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Picture of adorable Chinese water dragon with its head cocked to to the side, one beautiful copper eye looking at us, and gorgeous blue-green-brown scales–the only scales I wanna see!

“Featured pic” at top of this post is by Andrea Parrish-Geyer, follow her work here: https://www.flickr.com/photos/tinytall/

I know him.

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I have heard his voice.
I have seen his face contorted in anger.
I have watched the public react to his church-boy persona while I fear his secret rage.
I have watched him joke and play with his buddies, like an all-American dude-bro, like a good ol’ boy, while secretly calculating how much he can take, how far he can push. What he can get.
I have watched him assess how drunk a woman is. How much drunker she needs to be.
I have watched him grow bigger when he sees fear in someone’s eyes.
I know him.

I’m not alone. Most women know him. We know the petulant-yet-violent anger of pure entitlement, when someone DARES stand between him and something he wants and deserves, because goddammit do you know who he is?

I have watched the facade of thoughtful, reasonable consideration crack.
I have seen the raw, seething pit of SELFISH WANT and RAGE beneath.

I have witnessed the calculation. How much can he take and still maintain his self-image–that he is a good person? that it is justified? that he matters more? that he is a victim? that it was a prank or a misunderstanding or a lie? A lie.

How long will he have to lie to himself before he believes the lie completely?

I believe in peace.
I believe in nonviolence.
I believe in the slow and steady upswing of human history and equity and growth.
I believe in human goodness and love.

But now I understand the depth of rage and despair that drives riots.
I want to take to the streets and smash things.
I want to scream until my throat is bloody, until I AM HEARD.
I want to be heard, even if I bleed.

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SMASH: The Origin Story

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SMASH: Tearing Down Gender Rules was born when a radioactive spider–Wait.

One day, SMASH was exposed to gamma rays–Hold on.

SMASH grew up on the planet Krypton–No.

Although SMASH used to be a Russian secret agent and assassin–Um, that’s not it.

SMASH left the island of Themyscria to fight–

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Picture of LEGO Avengers. Yes, I know Wonder Woman is DC, not Marvel.

You know what? The origin story of SMASH isn’t nearly that exciting. But maybe you’d like to hear it anyway?

Late last spring I heard through a writing group that Irene Goodman–THE Irene Goodman, founder of the Irene Goodman Literary Agency, did you hear me? Irene Goodman!–was looking for someone to write an approachable, snarky-yet-grounded book about the history of misogyny.

Hey! I write things. And I’ve taught gender studies for 18 years. And I know some things about misogyny. And I’m approachable. And, well, definitely snarky. Kind of funny. McSweeney’s published me, so I must be kinda funny.

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A picture of Lin Manuel Miranda in a blue suit in front of a portrait of Hamilton, looking happy & proud & awesome as usual.

So…

“I am not throwing away my shot!”

I took some deep breaths and emailed her. She emailed right back! We talked on the phone and connected well–she liked my vision and wanted to know more, even though she’d originally been looking for someone more, well, famous–a big name already.

I’m not a big name. YET. But she was intrigued by my ideas, so I wrote some sample pages and sent them to her.

Then came the real shocker. She emailed, told me she loved the pages, AND THEN asked if I’d ever considered writing middle-grade non-fiction.

Middle-grade?

No, actually…I hadn’t ever considered it.

But the more we talked, the more I saw it. And the more I wrote, the more the words poured out of me, the more the project took shape in my mind, the more I realized OF COURSE this was a middle-grade book.

SMASH shows middle-graders how to decipher culture’s messages culture about gender. We can’t fight what we don’t even name. We can’t think critically about things we assume are just “natural” and “normal.” Once we see that gender is CONSTRUCTED, then? Then we have the chance to decide which messages we believe, which we question, and which we resist. Then we have the chance to figure out how to be our best, most authentic selves.

Knowledge is empowerment.

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RED HEART

I love this book so very much.

As I’ve been writing SMASH, I feel like I’m talking to my own kids. I’m talking to YOUR kids. I’m talking to ALL kids about things I wish I knew when I was their age. I’m talking to all kids about things they need to know–the earlier, the better.

I never want to talk down to kids–they’re capable of understanding SO MUCH MORE than adults often give them credit for. Instead, I break down complex concepts and explain them in simple terms, with clear examples.

Irene’s talking about SMASH with editors now. We’ve sent out a proposal including the first four chapters.

Next blog post? I’m gonna talk about how SMASH got its name.

Unless its name changes before then.

Which could happen, because we’ve had about seven million and three title iterations at this point.

So stay tuned!

 

 

True Facts about Parenting

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You know those Ze Frank videos?

(If you don’t, what is wrong with you? Go click now. Then come back here when you’re done in the rabbit hole.)

Please imagine this blog post read in Ze Frank’s voice.

Here are true facts about Parenting.

Parenting is the process of promoting and supporting the physical, emotional, social, and intellectual development of a teeny tiny bebeh from infancy to grown ass adulthood.*

This means parents are basically responsible for absolutely every aspect of another human being for at least 18 years and probably more like 25 years, because we now know that’s the age when people’s brains mature enough to stop doing idiotic things every other bloody minute. And even though we know people don’t stop doing idiotic things until the age of 25, we are still convinced all those things they do before then are somehow the fault of their parents. Maybe because of what parents do, maybe because of what parents don’t do. It’s really a crap shoot.

Parenting takes all the stress and anxiety about your daily life–paying your bills, going to your job every single day (yes, every day), cleaning your house, occasionally scheduling a dentist appointment or changing your oil–and adds to it all the stress and anxiety of someone else’s life, a wee person who relies on you for literally everything.

Because of this, parenting is the highest paid profession in our world.

Just kidding, people are crazy enough to do this for free.

You see, one of the dirty parenting tricks is to convince the next generation–those teeny tiny bebehs–their life will have no meaning unless they, too, someday become parents.

Parents do this as payback for the 18 to 25 years of stress, responsibility, and agony they endured as they watched their child grow, especially during middle school and high school. Parents gather in secret support groups and plot how to get back at their children by ensuring they, too, become parents.

Intensive parenting for 18 to 25 years is a human construct, which makes you wonder which species is really the most intelligent on the planet. The cuckoo bird tricks other birds into raising her bebehs by sneaking her eggs into other nests. Mother hamsters often eat their own offspring. The Hooded Grebe takes care of the first chick to hatch, but leaves the others behind. Perhaps multiples are too much trouble.

If you ask a human parent what they like about their all-consuming, anxiety-provoking, completely-unpaid job, they are likely to spew some words about unconditional love and fulfillment.

But next time someone goes on and on about the intangible rewards of parenting and how they pity people without bebehs, remember: parenting is not for the weak. Although it might be for suckers. And masochists.

/JK

(NK)

 

 

 

 

 

 

Frustrating Things

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  1. When someone makes specific plans with specific dates that are agreed upon in writing, and then claims that it was a different plan with different dates and gets really annoyed with you and acts like you’re the mistaken one, as you sit there with a written text record. I’m gonna call these people Plan Gaslighters.
  2. When someone who is a grown ass adult and should be able to control themselves instead drinks most nights and decides to send nasty texts.
  3. When you have to deal with Kindness Sharks. You know them. They’re like loan sharks, but with kindness and/or gifts. They do something nice for you. They give you something. You say, “Thank you!” and then they act like you owe them immense paybacks and try to guilt you into doing everything they want. A gift’s not a gift when it comes with strings! Don’t act like you think you’re so generous, you Kind Shark! You just want people to feel obligated to you!
  4. When you randomly start to feel bad for demeaning actual sharks in a list of frustrating things. Like, poor sharks. They’re just being themselves, just being authentic sharks swimming in the ocean and eating stuff and why do we have to be terrified of them and then use them to label jerky people?
  5. When you have to sit and be socially pleasant and cordial to someone that grates on your every last nerve. At a doctor’s office or in a work environment. Somewhere you can’t be rude and Every Nerve is screaming with irritation. Like…how could this person ever have been someone you chose to spend time with?
  6. When you drop a coin and it rolls waaaaaaay back under the vending machine and you can’t reach it and therefore can’t get the drink you really wanted to settle an irritated stomach. A stomach that is probably irritated from all of the above.
  7. When your Outlook mail intermittently doesn’t work correctly, but it’s always working when IT looks, and then it breaks for good and won’t even open and you’re waiting on IT. And waiting. And waiting.
  8. When you’re so aggravated you can’t focus on your Really Exciting Writing Project, because of all of the above. And then you wonder: why am I bothering with Exciting Project, when it’s about all sorts of liberal things like gender equity and apparently no one in this country gives a shit?
  9. When your country seems headed for complete fascism and all the work you’ve done in your life to increase social justice seems to be meaningless and without purpose, because awful people possess too much political and judicial power.

Helpful Things:

  1. Writing a list of frustrating things. Thanks for putting up with my public therapy.

(hahahahaha, I mis-typed that at first and wrote “pubic therapy,” which actually made me laugh and feel somewhat less frustrated.)

PTSD is a Sneaky Bastard

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Content warning: fire, PTSD, anxiety, trauma

 

I almost died in an apartment fire in July 1997. The building burned overnight, the night between July 7th and July 8th. Most likely, teenagers caused the fire (accidentally) by setting off fireworks in the illegally-placed dumpster–the dumpster sitting under the apartment buildings, next to parked cars. The dumpster caught fire and then the spray-foam insulation on the ceiling–the foam that was also against fire code and acted as an accelerant–caught fire. Then the gas tanks of nearby parked cars exploded.

My apartment was right above the parking area, right above where the gas tanks exploded, right above the dumpster.

It was a four alarm fire. Firefighters from four stations rushed to the scene. When the first firefighters arrived, they estimated the fire was burning at a temperature of 2700° and spreading at a rate of 10 feet per second.

I woke up when my windows exploded from the heat to find my apartment surrounded by fire, front and back.

I don’t need to go minute-by-minute through the rest of it. I was trapped. I was convinced in every atom of my being that I was about to die. I didn’t die. I managed to get out. Firefighters are fucking heroes, man, and if it weren’t for their quick response to the scene, I would not be here.

I have PTSD, Post Traumatic Stress Disorder.

I was diagnosed six to eight months after the fire by a thoughtful, humane, person-centered doctor of internal medicine who realized my physical symptoms of stomach upset, heartburn, and throat constriction were the somatic symptoms of PTSD. If she hadn’t asked all the right questions–not just questions about my body, but questions about if I felt safe in my life, how I was sleeping, if I was experiencing anger or threats–if she hadn’t probed, I don’t know how much longer it would have taken me to get help. I am thankful for her.

I have gotten help. Over the past 21 years, I’ve seen several therapists and done intense work around the fire. I’ve done EMDR therapy which was, for me, very beneficial. I’ve healed and grown tremendously.

But you know what? PTSD doesn’t ever actually disappear. I can usually manage my PTSD very well–I’m seldom triggered. I no longer think about the fire every minute, every hour, every day, every week, or maybe not even every month. That’s a huge change from the years immediately post-fire. I can light candles! I now cook on a gas stove! Our new house has a fire pit and we made a fire the other day and I didn’t freak out! I watched fireworks over Memorial Day without tears streaming down my face, without my body shaking! (I even enjoyed them!) I recognize, notice, and label my PTSD when it pops its head out of the depths of my psyche.

And yet.

This is the time of year, folks. These last two weeks of June, when my animal brain recognizes the scents on the breeze, the slant of the sun, the feel of the air.

Something’s wrong, my amygdala whispers. Danger is coming.

Danger is coming, my body echoes.

I feel jittery all the time, like I’ve had a whole pot of coffee. I feel restless and I struggle to focus. I’m hypervigilant. I can’t relax. My muscles tense. My stomach clenches. I feel sick, but also hungry, but also sick. I feel like a constant lump is stuck in my throat. I feel like the other shoe will fall. Will another shoe fall? Am I okay? Is everyone I love okay? Who’s not okay? What’s not okay? Something is not okay.

Breathe, Sarah. Breathe.

It’s okay to feel like it’s not okay, I remind myself. This is PTSD. This is your old friend, your old enemy, your old familiar haunting sneaking back into the forefront to recognize this anniversary.

But what if I always feel this bad? What if this time is different? What if I’m losing my mind? I ask myself, hating the frantic tone in my voice.

Today is June 15th, I answer. Every year. Every year you feel this way. Every end of June is hard. Every Fourth of July is significantly awful, as the fireworks explode everywhere. And every year it goes away again. Every year it recedes after you move through it. Every year it clears again as you survive.

Twenty-one years, this July.

Thank all the gods I’ve been alive these last twenty-one years. Thanks to the firefighters. Thanks to the doctor who first said, “PTSD.” Thanks to the four therapists who’ve given me strategies to cope. Thanks to the friends and family who empathize, who listen, who seek to understand, who stay calm and remind me that my calm will return.

And it will. I will be okay.

But these next few weeks are hard for me, folks. They are hard. I will treat myself with care. I will remind myself to breathe. If you see me in the next weeks, please be extra gentle with me.

Sparrow on human hands

 

 

Lessons from the Weary Mover

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We recently moved. Just across town, so you’d THINK that would be easier than some of the cross-country moves I’ve made in the past.

You’d be wrong.

Here are some of the Hard Won Lessons I’ve learned in the last month. I’m passing them on to you in case you’re thinking about moving, too.

1. Don’t. cd4

JK. NK.

But really, most of us move for really good reasons. Maybe you got a new job. Maybe you have a growing family and need more room. Maybe you have Nazis as neighbors. Maybe you’re tired of the basement portal to R’lyeh that keeps leaking non-Euclidean geometry into your house.

If you’re moving for a good reason like that, carry on.

If you’re moving for some absurd reason, though. Maybe…just don’t. Cuz this shit’s exhausting.

2. You own MUCH MORE STUFF than you think you do.

You own approximately 5.12 tons of stuff. Yes, you. You, right over there.

Wait, you have kids? I take it back. You now own 5.12 tons of stuff plus 13.7 tons of stuff per child. No joke. That’s an actual, scientifically-calculated number.

3. Most of all of that stuff is nothing you need.

If you move without it, you’ll literally never miss it. Give it away now. Or trash it, if it’s something no one would ever want.

If you haven’t used it in the last year, GET RID OF IT.

4. YMMV on this one, but I find the hardest things to sort through are books and things your kids used to love/play with/wear when they were little.

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At one point while sorting through our basement, I literally sat and cried over the plastic food my kids used to play with. I remember when they handed me that hot dog and I pretended to eat it! HOW CAN I GET RID OF THIS?

I’m not even talking about the nice, wooden, chop-this-velcroed-fruit fake food. I’m talking about the cheapest, flimsiest bunch of junk food.

Actual tears.

Don’t get me started on the books. Trixie Beldon, man! Yeah, yeah…no one in my house will probably ever read them again. Yeah, you’re right, my kids refused to read them when they were the appropriate ages. No, um, I’m probably not going to read them. But. But. But. But…I LOVED THEM. They had lasting and deep significance in my life! I…I…I………

Okay. Take pictures of those things. Keep the stuff someone might actually play with again or actually read again. If not? Then just keep the picture.

YOU CAN DO THIS.

5. At some point, you’ll look around, pat yourself on the back, and feel like you’ve made great headway packing up your whole house! BUT DON’T FALL INTO THAT TRAP.

The final 10% of the crap that you own takes 90% of the time to pack. And you’re going to keep discovering more and more and more and more stuff hidden in random places. Plus, you’re going to end up with a bunch of boxes at the end labeled “Misc,” “Odds & Ends,” and “What Even Is This, No One Knows.”

whatisthis

 

6. Unpacking might be worse than packing. It will take approximately 1,268 days for you to actually settle into the new house without stumbling across yet another box or something that needs to be organized. I haven’t hit that point yet. I’ll let you know when I do.

 

Um. So good luck with your move.