Dignity versus Nobility

It's been a long couple days in front of my computer.

Brittany Maynard chose to end her life on Saturday, surrounded by her loved ones. And as a result, I can't get away from the story.

It's all over facebook (although my friends and acquaintances thankfully have enough tact not to post it directly to my wall). It's all over the radio. It feels like it's everywhere.

A woman with the same brain cancer as my husband, three five years older than he was when he was diagnosed, and three years younger than he is now, ended her life in order to avoid suffering. When I say the same cancer, I mean THE SAME CANCER. The same size tumor. The same location. The same stage.

I've been cautious not to form much of an opinion. I've been careful to remind myself that she is not me, that she is not M, and that she was experiencing grief and fear and the desire to live a beautiful life in her own individual way.

I respect her choice, but as much as I sympathized with her and pitied her and wished for her to control her destiny to the best of her ability, it still enrages me now that she's gone. (Yes, I know, classic stages of grief.)

And here is why- it comes down to the word dignity.

To die with dignity.

I believe it is every person's right. But that word means many things.

M wanted, when he learned his diagnosis (but not his prognosis, mind you), to die with dignity. For him, that meant finding a medical trial to participate in. For him, that meant giving his death, not only his life, meaning.

He said over and over to me, he did not want to be defined by his brain cancer. He didn't want memorial funds in his name to raise funds for brain cancer research. He didn't want grey ribbons on all his friends' car bumpers, or 10Ks, or telethons. He wanted to be remembered for what he did, not what the cancer did to him.

He wanted to be remembered for his work on buildings that would stand for generations. He wanted to be remembered for his sense of humor and his brilliance. He didn't want to be forever associated with a disease. He didn't want to be Lou Gehrig.

He wanted to be himself, in control of himself. Just as Brittany Maynard did.

Only his idea of dying with dignity wasn't completing a bucket list of places to visit and things to see. It was saving other people. It was giving his death to other people, in the form of a medical trial. Of using his death to help understand the cancer, and perhaps keep other people from experiencing the same fate.

This contraption held his head down to a table for treatment.
The marks are for aiming the beams of radiation directly at the tumor.

At the time, the word that came to mind for me was noble. I thought he was unbearably noble. But he didn't see it that way.

For him, it was about dignity. About standing and facing his fate and making something better of it.

In a way, Brittany Maynard did the same thing. Her way of making something better of her death was to try to ensure that all other terminally ill people in the United States have the same option- the die before living is too painful to endure.

I know what kind of pain Brittany Maynard was facing. I know it. In one of her last statements, she said her helicopter flyover of the Grand Canyon was followed by her worst seizure yet.

Seizures are no joke. I know.

But dignity isn't just making sure you avoid pain. Dignity is prioritizing your humanity over your fear.

Yes, the right to die is incredibly important. And of course I have no way of knowing what options for treatment Brittany Maynard had. I don't know if a clinical trial was a possibility for her.

And as I've said a thousand times before, I don't believe that suicide is a selfish act. That Brittany was thinking of others is obvious to me, she made sure to say she hoped her husband would remarry and have children someday. She understood that life goes on for the loved ones of a dying person.

But at twenty nine years old, less than a year younger than me, I wish I could stare her in the eyes before she made the choice NOT to undergo any sort of treatment that would effect her quality of life for those last months, and ask her, "Who are you doing this for?"

I don't know if M's trial is saving any lives. I believe it could. I truly believe it could. It was dangerous, and it was frightening, but it worked.

And if it hadn't, doctors would know going forward what not to do, and why, when another terminally ill patient came along.

So maybe Brittany Maynard died with dignity. Maybe she did.

But maybe that kind of dignity isn't enough. Maybe, for me, death should be about more than dignity. It should be about more than avoiding suffering.

It should be about what you give the world with your life and death.

The OKO Tower, currently under construction in Moscow, and one of the projects M is most proud of.

When you're young, this is a much harder question. In your twenties, what do you really have to contribute to the wealth of human knowledge and understanding and beauty?

As you age though, you give more. You can't help it- living in of itself is giving.

My heart breaks for Brittany Maynard's family. Especially for her husband, who at least got to enjoy marrying the love of his life without the shadow of this prognosis and planned death over his head.

And I know that M is not typical. That his story is profoundly unique. But when I look at him, this man who at twenty four, the day after proposing to me, was diagnosed with the same brain cancer, and has since married and had three children...

I can't help but question the information Ms. Maynard was given. I can't help but question her motives. I can't help but question whether this wasn't about dying with dignity, but making a point.

And I would scream from the mountaintops to anyone else with a stage four, inoperable glioblastoma, "You can have more than dignity! You can be NOBLE!"

Maybe it's just from watching the man I love struggle always for what is best and most right for others, but I would always choose the latter.

Someday, the time may come when M is ready to choose to die. But I know him, and I know he would only ever make that choice if he thought living, under any circumstances, would give no more to the world than it would take from it.

M and his dad watching a pig race with the kids-
seven and a quarter years after being diagnosed with terminal, inoperable brain cancer.

I hope that is an equation that other people suffering from terminal illnesses can consider.



Edit:
In response to the question- what if *I* were diagnosed with a terminal, debilitating illness?
At this point in my life, if it were in fact the same glioblastoma, I might consider planning for a Brittany Maynard-esque death with dignity. Because the process of going through personality changes that might make me angry or even abusive towards my children is something they are not yet old enough to understand. My choice would be based on my desire to cause them the least amount of trauma- leaving them with memories of me intact. Again, the equation would be that living would give no more to the world than dying would take from it. But if faced with a similar illness before I had children or once they were old enough to understand the effects of diseases of the brain, my calculation would probably be different.

My Body, My Choices- Thoughts on the Chicago SlutWalk

Over breakfast on Saturday morning, I reminded the children that we were going to a rally. To protest, as I simplified for the children, when people are mean and hurt other people, then say it's the other person's fault because of what they were wearing. I told them, as I often told them, "You're in charge of your body, and nobody is allowed to touch your body without your permission."

"There will be lots of people with signs there. I think most people will have signs. Would you like to carry signs, too?"

"Yes!"

"What would you like them to say?"

DD answered in typical DD fashion: "You should wear whatever you want to wear because you get to wear what you want and people shouldn't be mean to you because of what you wear and you get to wear what you want and if people are mean that's not okay because they don't get to choose what you wear and you do get to choose what you wear and they don't get to be mean to you."

"That's an awful lot to put on a sign. How about, Wear What You Want To Wear?"

"Yes! Can it be pink?"

"Yup! SI, what do you want your sign to say?"

"How about, I'm in charge of my body?"

And so I made the kids signs, and RH freaked out. "I want a sign! I want a sign!"

As we were on our way out the door, I grabbed a sharpie and whipped up a quick little sign for her, without asking first. Considering that RH is the most stubborn kid I've ever known, I thought a message she's approve of was that she makes the decisions regarding her body. This is already as true as it can be for a two year old. "What's it say, mommy?"

"My body, my choices."

"MY BODY! MY CHOYZIZ!"

"Good enough."

Forty minutes later, we were at the fourth annual Chicago SlutWalk.

Of course the kids were a hit. Everybody who stopped and asked what their signs said got an earful. SI especially loved telling people EXACTLY what her sign said, and what that meant. She got a lot of high five from essentially topless women.

I was so proud of them. I was so proud of them for asking intelligent questions all afternoon, and being patient through over a mile of marching. I was so proud of them for being polite and kind to the people there.

I took a picture of them with their signs, and when we got home, I put it on the Becoming SuperMommy facebook page and twitter.

Within hours, the backlash came.

Let me be clear- I have taken my children to SlutWalk twice before. I have published pictures of my children at SlutWalk twice before.

Never have I experienced anything like this.

@OMFG_Josh @bcmgsupermommy it is creepy giving signs 2children 2hold in that setting. Who else does that? Oh yea, #westborobaptistchurch O.O
— ....... (@onwrongplanet) August 24, 2014

“@bcmgsupermommy: Took the kids to @slutwalkchicago #slutwalk #rapeculture pic.twitter.com/3AbLZUUm58” Take this fucking whore's kids away!
— Mr. Mayhem (@OMFG_Josh) August 24, 2014

.@OMFG_Josh @bcmgsupermommy @slutwalkchicago this woman should be arrested and put under the jail for what she did to these kids #slutwalk
— Alexiis Starr (@AlexiisStarr) August 24, 2014

Maybe it's because all the responses I've had to previous year's SlutWalk posts have been so positive, I was blindsided. And more than that, I was hurt.

Because, knowing full well that one should NEVER EVER EVER EVER EVER engage with a troll... I responded to them.

And what they said pained me in my soul. Not because of the personal nature of the attacks, that didn't bother me at all. It was their profound blindness to reality.

@bcmgsupermommy @slutwalkchicago who the hell says people are blamed for being attacked? I know nobody who says that.
— Rusty Shackleford (@mattohmyjones) August 24, 2014

@bcmgsupermommy @onwrongplanet And the fact of the matter is that chicks who dress like sluts are treated like sluts. As they should be.
— Mr. Mayhem (@OMFG_Josh) August 24, 2014

@bcmgsupermommy @mattohmyjones @slutwalkchicago Having sex w/ someone who doesn't want to have sex, is NOT rape.
— J M B (@JahMMARastafari) August 24, 2014

What got to me was knowing that in attempting to help my children escape and change a culture that devalues them for being female, that will condemn them for what they wear and blame them for their own victimhood, I have exposed them to a form of that violence.

I knew it was possible that as we marched people would shout unkind things. I was ready to talk to them about it. To teach them.

What I wasn't ready for was being personally attacked for teaching them. And I realize now how profoundly naive that was.

The fact is that we live in a culture where events like the SlutWalk are still necessary, because we live in a culture where college students are devoting their time to inventing nail polish that detects date rape drugs. We live in a culture where thousands of people think it's a good business idea to produce rape-proof jogging shorts.

And there IS a need, and a market for those things, because sexual violence is RAMPANT.

When they go to college, I don't want to have to take my daughters shopping for anti-rape pants and nail polish that changes colors when exposed to roofies. I don't want my children going to high school and being able to relate to a new generation of teen political anthems, like this punch-to-the-gut country song:




Yes. There's a country song about Steubenville-esque high school date rape. Because this story is so damn common that it's horrifically relatable.

THIS is the world we live in.

This is the place I have to teach my daughters to navigate. To survive and thrive in.

This is the world I have dedicated myself to changing so that the burden my daughters bear will be lighter.

I took my children to a place where women were dressed provocatively, some wearing only thongs and pasties. Because the point is that IT DOESN'T MATTER. It doesn't matter what a person wears- they are STILL a person. They are STILL in charge of what happens to their body.

It doesn't matter if they expose their body, that's not an invitation to ignore their autonomy. It's not an excuse to dismiss their ability to say 'no.' It's not public property, even when it's visible.

After the hate mail started coming, I asked M if he was glad we took the children.

"Of course I am," he said. "While I was walking, and reading all the signs and everything, it really hit home for me in a way it never had before. How one out of three women... and we have three daughters..."

I will not apologize for taking my daughters to SlutWalk.

If I had sons, I would be even more determined to take them. Because it is our sons more than our daughters who constantly hear messages that women exist for their pleasure. While I've had many fears about raising girls in my years of motherhood, until Saturday I hadn't really understood what it must be like to fear raising boys. To fear the mechanism of our society that wants to taint them, to train them, to pat them on the head and permit them to become abusers.

I would take my sons to the SlutWalk, and say to them- "These are people. All of these people are PEOPLE. And when you see somebody in next to nothing, or naked, they do not stop being people. They don't suddenly lose their right to control what happens to them. Remember that for the rest of your life."

I will not apologize for teaching my daughters that they control their bodies, and their fates.

But I will apologize for this world, because I am a part of it. And until I can be confident that I have more than done my part to make it safe for them to exist here, as girls and then women, the guilt that has plagued me most of my life will continue.

I am responsible for them. For now. For a short window in time, I am in charge of keeping them safe- and more importantly, teaching them to remain safe.

I'm going to keep doing it the best way I know.

At SlutWalk '14

At SlutWalk '12

At SlutWalk '11

Kiss with a Fist

This week's Twisted Mix Tape theme is "I don't just love you, I'm addicted to you."

I know that this is a wonderful opportunity to share "The Perfect Drug" and "Dilaudid," but there's something more important I want to use this mix tape for.

Yes, I'm using Twisted Mix Tape Tuesday as an opportunity to get onto my soapbox.

But this is more than my soapbox. This is about real life, and real people, and real life tragedy.



A few days ago, Chris of Adventures of a Thrifty Mama was murdered by her estranged husband.

She'd filed for divorce, for a second time. He had a history of abuse. But after dropping her request for an order of protection, the police gave him back his guns, and he used them to shoot her, her oldest son, and himself.

I didn't know Chris well. Our paths crossed online more times than I can count, the internet is a remarkably small place sometimes. She was sweet, enthusiastic, motivated... she often made me uncomfortably aware of just how lazy I can be. She was creative and resourceful, and she loved her four children more than anything.

She was trying to sever all ties with her abuser. It was the most dangerous time for any victim of abuse- the time when they are most likely to be killed.

I had an abusive boyfriend once. He roughed me up, sexually assaulted me, and when I tried to cut him out of my life... that was when the death threats started. After a few years, I finally tried to file for an order of protection, but they wouldn't give me one without a police report.

So I tried to file a report, and the police shrugged me off.

Chris had police reports. She had eye witnesses to abusive behavior. Her abuser's actions were well documented, known.

And then he killed her and her son, leaving a four year old, a six year old, and an eight year old orphaned, without their big brother.

So why am I writing about this now? When there's a Mix Tape to play?

I'm writing about it because sometimes, songs can convey more about a situation, about a pattern, than somebody up on their internet soapbox, screaming for somebody to do something.

But the thing is, women often WON'T leave their abusers. A friend of mine- Trisha of IdeasForWomen.com, has been fighting for custody of her child since leaving her abuser- from her abuser.

There are so many reasons women stay.

And so many of them are like addiction.

So I'd like to dedicate this mix tape to Chris, and Trisha, and the one in four women who have suffered domestic abuse.

Like addiction, you think you're hooked on something good. But as time passes you see that it's rotten, through and through.

And that's where we'll begin.


First up on the list, "Jane Says." Listen past the cheerful drums, and this is an ominous story about a woman dealing with an abusive relationship. "He treats me like a ragdoll," she says. "She's going away to Spain, when she gets the money saved. I'm gonna start tomorrow. I'm gonna kick tomorrow." The language of addiction fits the story. "She says, I've never been in love. I don't know what it is... I want them if they want me. I only know they want me."



In the beginning, it can seem exciting. Or "fixable." Or just, the way things are. You make excuses. You ignore it. The early stage infatuation begins to shift into outright addiction.



Once the habit is formed, it can be hard to break. So yes, the abuser is hurting you. Yes, you know it's wrong. But you're still making excuses for them. Still in love. Still unwilling to admit how bad things might be.



There comes a point when your friends can see what's happening. Maybe they say something, maybe they're afraid of driving a wedge between you when things are so dark. This song is from the perspective of a friend, trying to get another friend out of an abusive relationship. "You're just a sucker for the ones who use you, and it doesn't matter what i say or do, the stupid bastard's gonna have his way with you." But it takes an even darker turn. It becomes an ultimatum. "He's gonna beat you like a pillow... And if you take him home, you'll get what you deserve." "So don't cry, Delilah. You're still alive, Delilah."



And accepting abuse becomes internalized, habitual. "I think it's because I'm clumsy. I try not to talk too loud. Maybe it's because I'm crazy. I try not to act too proud... They only hit until you cry."



Start at 4:50.
They come up with all sorts of explanations for themselves. "I need you." "I love you." But this is what they really mean. "I need you... to put through the shredder in front of my friends." "I need you to beat to a pulp on a Saturday night." The addiction swings both ways.



Then come the threats. Hints of what might happen to you if you put a toe out of line. If you leave. "His head was found in a driving wheel, but his body never was found."



And this is where it ends. If you don't get out this is where it ends. Just as with addiction, either you live long enough to break away, or it kills you.

And sometimes, it's breaking away that kills you.

Let's think about a culture that glorifies violence. About a world where I can cherry pick songs about spousal abuse, domestic violence, and murder out of thin air. Where there are so many of them that I could fill you up a flashdrive to give you nightmares each night.

Because I've been having a few of my own. Falling asleep thinking about Chris, and her fourteen year old son Isaac, and her three very little kids who survived their mom...

Think about it. Think about what it says about all of us.

Think about our addiction to victim bashing and guns and an endless litany of excuses.

And think about a woman who tried to do everything right, and still couldn't get away from this disease. This disease of violence.

Remember Chris.

Changelings

You can't trash the house if you're in a fort, right?

I have been aware since my twins were only a few weeks old that I had been blessed with very easy children.

As infants, the twins slept through the night starting at about twelve weeks.  RH started sleeping through the night at seven weeks.  On an average night, my kids are all asleep and in bed by 10:30, and nobody (except M) wakes up again until about 7am.  Yes, I'm bragging.

Nobody was colicy.  Nobody got chronic ear infections, teeth grew in straight, they eat happily, they entertain each other.  I haven't had to purchase grubling glasses, DD's minor underbite self corrected, injuries have all been minor enough to treat at home.  They're polite, they play well together, the big girls love the baby and the baby is enamored of the big girls.

I have phenomenally easy children.

Or at least... I used to.

Look at those angels, reading to their baby sister.
You'd never know that whole room was about to be
destroyed by "baseball."

I don't know about you, but I've heard over and over and over again that the "terrible twos" are not the thing to fear.  It's really the threes.  And although the birthday itself is yet to come, I can tell you right now...

They're right.

The threes are undoing all my good will towards my children.  Well, not really, but probably by the time they're four I'll be ready to sell them to the circus.

You see, I didn't toddler-proof my home.  I never needed to.

You got that right, I never needed to.

We put up gates and fences around things that were dangerous, just in case, and that was that.

And as we got tired of having them around and the girls responded well to reminders about dangers, we took them down again.

I remember a moment at the girls' 2nd birthday party.  One of the other moms there, who I knew from a playgroup but had never been to my home, looked around in awe.  And she said to me, "Did you baby proof?  Can they just get to your computer?"

And it occurred to me that, yeah, they could.  Of course they could.  But they knew it was off limits, so that was okay.

She looked at me like I was crazy.  Or like I was from another planet.

And so I came to realize that my children were abnormal.  They were the sort of children that one can give instructions to, and expect them to be followed.

Note the crayon on the cabinets

HA.

About a month ago, my children made a terrible discovery.

Just because they're not allowed to do something, that doesn't mean they can't.

And so they wait.  They wait until I'm sitting down, nursing the baby... or in the bathroom... or cooking.  They wait until my attention is diverted, and then they STRIKE.

Suddenly, if it occurs to me that I haven't heard my children in thirty seconds, they are doing something awful.

They are playing with an electrical outlet.  That's a whole blog post in of itself.  For real- we had to talk about parents hitting their children over this one.

Or they're climbing onto the bathroom sink to empty the medicine cabinet.  I screamed myself hoarse, but I just wasn't ready to get into the conversation about how dangerous medicine can be.  Not with flu season around the corner.

Or they're emptying every spare roll of toilet paper into the toilet at the same time.  You'd be amazed how hard it can actually be to explain plumbing to somebody who doesn't quite get the concept of pipes.  With water in them no less.  This is beyond the realm of human comprehension, based on the way I explain it.

Or they're using every single wet wipe in the house to "play Cinderella," which means to wipe the floor for a few seconds.  This has previously been a totally acceptable game- where I give them a wet washcloth after a meal, and they clean up themselves.  They don't seem to understand at all that there's a difference between one wet washcloth and one thousand wet wipes.

Grandmommy and I gave the girls their first haircuts.
Sorry I forgot to blog about that.

Did you know that baby soap can actually remove varnish from antique furniture?  It can!  Just empty a Sam's Club size jug of it onto your circa 1920 coffee table and let it sit for three hours!

Even my meager attempts at childproofing have been totally undone.  I've caught them stacking chairs to reach scissors.  No clue what they were going to do with the scissors, but it can't have been good.  They did recently have their first hair cuts.

Their toy kitchen is covered in crayon.

I can't leave a room without it being instantly trashed behind me.  That includes' RH's room too- if i'm busy with the baby, the girls will go into her room and play "baseball."  "Baseball" is a game where they grab one of RH's toys, scream, "BASEBALL!" at the top of their lungs, and then throw the toy as hard as they can across the room.

I'd be very proud if I wasn't so overwhelmed with frustration over this sort of thing.

I can't open a trash can without discovering something that is NOT garbage.

I can't go to the bathroom without first checking to see if it looks like a preschooler attempted to flush her underpants down the toilet.  Again.

Our house is never going to be the same.

I keep coming up with plans to keep them from trashing the joint.  I orchestrate our cleaning/dance parties, I build blanket forts that cleverly obstruct their access to all of their toys, I force them to come from room to room, "helping" me put away laundry or dishes.

This pillow fort only helped for a little while.
But not a long while.

And then I sit down to nurse the baby, or go to change a total blowout diaper, and it's as though bottling up that destructive energy just strengthened it.

The grilled cheese they were enjoying in their blanket fort gets ground into the pillows, the cheese permanently staining the lovely linen blend fabric.

The newly cleaned floors are a perfect place to simply dump every single toy onto, apparently just to enjoy the sound it makes.  Alphabet magnets slide under every piece of furniture.  Somehow the girls know which furniture is hiding pieces, and have meltdowns until they are retrieved.

And every time I walk into a room and discover that somebody has "cooked" by dumping a package of graham crackers on top of an afghan and then had a dance party on top of it, I lose my mind a little bit.

And then there's the fighting, oh Lord the fighting...

"She hit me!"
"She pushed me!"
"She kicked me!"
"She scratched me!"
"She poked me!"
"She pulled my hair!"

But not just that, the crazy fighting.  The sort of things that are unfathomable in their viciousness.

They are fighting over who gets to be the baby.
Hence the boppy.

"She's running away from her slipper!"
"She's singing!"
"She drank my milk!"
"She ate my goldfish!"
"She said I can't do THIS!" (flails arms wildly)
"She not wearing her socks!"
"She won't brush my hair!"
"She stole RH's shoes!"
"She doesn't WANT to watch Aurora!"
"She yelled!"
"She went like THIS!" (flails arms wildly)
"She took my book!"
"She making a funny face like THIS!"
And my personal favorite...
"She won't hug me!"

I now understand the stories of changelings, creatures who have replaced your perfect children in the night.

My children have become monsters.

It's made the transition to preschool oh so much easier.  I am utterly relieved to have the destruction machines out of the house for ten and a half hours a week.

My children turn three in just under two weeks.

Four cannot come fast enough.