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I am bone tired.

Not just because my husband and I enjoyed a crazy, whirlwind weekend- our first ever away from the kids.

Not just because we missed our flight home and stayed up all night, flying standby and finally coming back to our home in time for our children to rise and begin their day. Not just because today is a day to them like any other, and they don't understand or care that I'm sleep deprived and suffering the repercussions of twelve hours of airport food and wharf fudge.

I am bone tired because I made a conscious choice while I was on vacation- my first vacation since my honeymoon.

I decided to ignore the news.

This was particularly difficult, as I was vacationing in beautiful Santa Barbara, California. Where this weekend's tragedy occurred.

I say "this weekend's tragedy" to clarify, because I am so damn tired I'm afraid I might confuse myself. Because roughly twice a month for what feels like as long as I can remember, there's been something else like it. Some other person who took their guns to town, despite Johnny Cash's old advice, and slaughtered human beings.

I also say "this weekend's tragedy" because if I were only to say, "A confused, angry man decided to take his rage out on women he saw as having wronged him, and took lives in his fury," I could be talking about the three women who are murdered by their husbands or boyfriends or exes every single day.

So "this weekend's tragedy" it is.

Seven people killed. A gigantic tome of a manifesto by the murderer, who took his own life. A dozen more injured.

Why? Because he believed those women owed him something. Sex, attention, affection, something. He believed those women wronged him just by not seeing in him what he saw in himself- that he deserved them. That he had somehow already won them. That they were not people, but the objects of his desire, and as such he already owned them.

That's what he saw. And so instead of seeking therapy, instead of moving to a country where women legally aren't people with their own rights and own stories and own lives to run as they choose, he targeted and killed them.

He put videos on the internet of himself ranting, blaming his victims for imagined crimes against his fragile ego. It's the same rant you can find in court testimonies in domestic violence cases across the country. It's the same narrative you see in movie after movie, in book after book. "I was there for her, she owed me. She lied to me when she smiled and didn't put out. She led me on. She deserved what she got."

And I am exhausted.

I'm exhausted because #YesAllWomen is trending on twitter, it's trending everywhere, and I can't look away. I'm not on vacation anymore. I can't look at my husband and say, "It's our second honeymoon- it's a special trip- I'm not thinking of sadness or rage or any of it. Let's get in the hot tub and drink margaritas while the sun sets over the ocean." I can't do that, because I can't take my eyes away.

I'm tired of saying over and over again "I'm a feminist" and having people react as though I walked into bar mitzvah with a "Jews for Jesus" t-shirt. I'm tired of saying over and over again that I advocate for victims of sexual assault, but it's not because I'm a survivor. Or not only because.

I'm tired of having to use phrases like, "I'm married," to get men to leave me alone. I'm tired of having to use phrases like, "I'm a rape survivor" to get airport security to stop leering and digital images of my artificially nude body.

I'm tired of drafting conversations in my head I won't need to have for years, to tell my daughters how much I love them but that they need to protect themselves, because even though it's not their job to avoid being raped they will be blamed if they are raped. Not by me, I'll tell them. But it will happen. And I can't stop it.

I'm tired of knowing that I alone can't stop it.

I'm tired of signs and ads and facebook memes reminding people that every woman is somebody's daughter, or wife, or mother, or sister... as though she's not her own person regardless.

I'm tired of sitting in front of my computer, watching picture after picture of victim and villain appear on my screen, and feel the need to make excuses for everyone. To apologize for everyone. To apologize to everyone.

I'm tired of feeling responsible, responsible for my own victimization, and responsible for the fact that it continues.

I'm tired of tragedies. But when they come so fast and so often, it's hard to remember they're tragedies. It's hard not to simply see them as life. As life in a country where women are technically given equal rights, even if our lawmakers refuse to extend them to pay, workplace protections, or healthcare. It's easy to say, "Oh dear, another mass shooting, another murder spree, another bunch of anonymous victims- dead and gone. Somebody should do something to make it stop. Too bad there's nothing to be done."

There's always something to be done.

I'm sorry. I'm sorry I buried my head in the sand and allowed myself the luxury of a weekend. I'm sorry I intentionally closed my eyes and ears to the news happening literally all around me, and drank icy beverages and wandered the beach and gazed at the mountains. I'm sorry.

And I'm pissed as hell that I have to be sorry for that. Because I deserve a few days of happiness and relaxation, don't I?

And I'm miserable at feeling so selfish and self entitled that I could actually dismiss the tragedy of eight families, shrug them off and tell myself I'd feel their pain later.

That's what we all do, all the time. We all say we're too busy. We've got important things to do that don't involve mourning.

Mourning is never on the agenda.

So I'm tired. And I know you're tired, too.

But that's just too bad. Because there is no such thing as being too tired for empathy.

There is only the selfishness in all of us that doesn't want to feel it, because we have more important things to feel.

There is nothing more important to feel than empathy. And I'm ashamed of myself for forgetting that, even for a weekend.

I'm so sorry.

And I'm tired of it.

The Binder

The binder

The day I got engaged was one of the best of my life. Not only because of the engagement, that came at the end. The whole day was beautiful and loving and warm and sunny and spent with my favorite person in the universe. And then he ended the day by proposing, which was a cherry on top of the enormous chocolate fudge banana split that had been my day.

The next day was the third worst of my life. Within a week of getting engaged, and experiencing the second worst, I was learning a whole new world of vocabulary. "GBM," "glioma," "intrusions."

I was already pretty brain tumor aware. I'd been misdiagnosed with not one, not two, but three brain tumors. Of course, each time a doctor bullied me into getting an MRI or CT scan, the answer was the same. I did not have a brain tumor. I had painless ocular migraines, or synesthesia, or dysautonomia. All neurological problems without tumors to blame them on.

So when, in the winter before we got engaged, my future husband complained about problems with his left arm and leg, I worried.

"You should see a doctor," I said.

"It could be neurological," I said.

But of course it wasn't, he replied. He'd pinched a nerve. Or he'd forgotten to stretch properly. Healthy, strapping, brilliant, baseball playing engineers in their early twenties didn't have neurological problems.

He was happy. He was active. There was nothing wrong.

It took me months to convince him to see a doctor. I wasn't really worried. I mean, he was right, wasn't he? We were living together by then, and I saw him every day. I didn't see anything wrong with him. But when he came back from softball practice and complained that his left leg just didn't quite move the way he wanted it to when he was running bases... I worried.

So he saw the doctor. The doctor performed what were no doubt the standard tests. And at the end of the exam, he shrugged away M's concerns.

"You're a healthy guy. I'm guessing you have a pinched nerve. We could do a neural pathway test, just to be sure where it is, but really what you need to do is stretch better."

"That's what I figured," M no doubt replied, and they agreed the neural pathway test was a waste of time, energy, and money.

Of course, what the test would have found was that the thing blocking his neural pathways was in his brain. And that probably would have let to a CT scan. And that would have shown what we found instead the day after we got engaged.

Don't get me wrong, I'm not complaining about this turn of events. Because M was tied into a terrible HMO, having the opportunity of an emergency surgery to change medical teams got him superior care. Because of M's absurd ideas about honor and nobility and commitment, he would not have proposed to me if he thought he was about to die. Because our engagement was followed by trauma and chaos, our families never had the opportunity to doubt us as a couple, despite our differing religions, lifestyles, and backgrounds.

We were lucky. Unfathomably lucky.

Hardly anyone is ever so lucky.

So for Brain Tumor Awareness Month, I'd like to share something with you. A little piece of what it means to be aware of brain tumors. So aware that they swallow your entire life and become the one thing, the only thing, you are certain you understand anymore.

This is The Binder.

That week after our engagement, when I was learning to speak Brain Tumor-ese, my future mother-in-law started taking notes on a legal pad about what was happening. Recording it, in case the information would come in handy.

I rolled my eyes at her, I'm sorry to say. Or I would have if I wasn't trying so hard to be compassionate and understanding of everyone else's feelings at the same time as my own. I was angry at everyone, I thought their acceptance of M's prognosis would effect him like a contagion, and if he caught even a hint that they expected him to die, he would. But taking notes seemed harmless enough. They might even come in handy.

I had no idea how handy they would be.

Before M even began treatment, the legal pad had morphed into an enormous binder. Everything we could need, anything anyone could need, it was there.

It's still there.

It lacks a table of contents, and the past seven years have faded the labels on the tabs,
but I know what's in there.

Every six months, we go back to the hospital for another set of MRIs. And every month, I lug this enormous thing with me.

Those pink spots are bits of tissue from M's brain tumors.
Hard to be more aware of something than when you're literally holding it in your hands.

It's both an organizational nightmare and wet dream.

Every doctor, pharmacist, therapist, social worker, nurse, patient liaison, insurance representative, etc. we ever
needed to interact with or ask something of, ever.

It still has everything we could ever need, all the information we've ever collected. All the data. All the forms. All the files. Everything.

Every medication, every dose

It's not just the technical details, either. That legal pad of Grandma's became my confidante. M never read the binder- so I was more honest with it than I was with him. If I thought he was depressed, or struggling, or weakening, it went into the binder. And then I could bring it up casually with the doctor, M never being the wiser for my worries.

Reams of pages of the journal, dates and times of seizures, appointments, what we talked about, mental state,
everything.

And it was more than that. It was a constant reminder of everything we had to do, and of everything that Brain Tumors mean. Lab reports. surgical reports. MRI reports. Doctor's notes on official hospital documents. Discs of MRI images of white shapes inside my husband's brain.

Booklets titled, "A Patients Guide to Understanding Brain Tumors," and "Temodar: Your Questions Answered." As time wore on and the binder became heavier and heavier, changes had to be made.

I got a second binder.

I still live with these. And in a few weeks, when it's time for M to go back for his every six month check up, it will come with me. Just the one- the second binder is full of information either for only our references or that has outlived its practical usefulness. Until, as his doctor likes to warn,  "when" his tumors grow again.

Personally, I like to believe "when" means when he's ninety, dying from something totally unrelated, and his weakened immune system allows new tumor growth.

I could live with that.

This is what Brain Tumor Awareness is.


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Click here to read about my engagement and what came after.
Click here to read more about "when."