Now I Lay Me Down To Sleep

When I was about eight years old, I stopped sleeping. It wasn't a choice I made, it was something that happened to me I couldn't entirely explain. I just couldn't sleep. Some nights I'd lay awake in bed, staring at the ceiling, playing games with my imagination. Some nights I'd crawl out of bed and into the TV room next door, turn on Nick at Night and quietly watch F Troop, Get Smart, and I Love Lucy until the ominous moment that Mr. Wizard came one. That meant it was officially day- the children's programming was beginning again. Most days I turned off Mr. Wizard and climbed into bed, to close my eyes until my father woke me for school.

Many times, during that two hour window, I fell asleep at last, and my father struggled with rousing me from my bed- oblivious to how little sleep I'd managed to catch while the sun rose.

Some nights, I would go and knock on my parents' door. Occasionally my mother would take me to the living room, tuck me into the couch, or a few armchairs tugged together into a sort of crib, and leave me with a book and a shot glass full of schnapps, saying, "Sip it slowly. It'll help you sleep."

On one of these nights, she walked into the library, the room with our television, and grabbed a book off the shelf. A grownup book. It was "R is for Rocket," the story collection by Ray Bradbury. I read the whole book before finally drifting off, my ounce of schnapps inside my stomach and my lips both sweet and bitter. From then on I frequented my parents' library. I read dozens, hundreds of books. Everything by Ray Bradbury, although I really didn't understand some of it. I read the Agatha Christie novels my grandma loved, I read the complete works of Roald Dahl... I read "The Eyes of the Dragon" by Stephen King, and after telling my parents how much I loved it, they invited me to stay up with them one night and watch Poltergeist.

Once I was old enough to have learned the geography of our college town, I would sneak out of the house at night and walk, for hours.

I walked downtown, looking at all the darkened shops. I'd walk to the elementary school where my little sister went, and swing on the swings, singing quietly to myself until the sky started to turn purple.

I walked to campus, climbed into parking structures, and sang in the stairwells- every song I knew. Belting out show tunes and practicing my audition pieces for State Honor's Choir.

Me at 15, in front of one of my insomnia murals

I walked to friends' houses, stealing roses from neighbor's gardens, leaving them on their doorstep for them to find when they went to school.

I rarely had company or trouble on my walks. I took to wearing a long black cloak, which I hoped hid my gender as well as my face, and I walked fast if anyone was present. One night there was a man standing in front of one of my favorite downtown shops. Just standing, in the dark. Grinning. He creeped me out with that grin. He looked as old as my grandfather, and much balder. And as I realized he was watching me speed past, I realized he was naked from the waist down. It was the closest to danger I ever came on my strolls.

My parents tried to help me with my sleep. My father taught me meditation techniques, even loaned me meditation tapes. He taught me to breathe in through the nose, out through the mouth. My mother took me to therapists to help with the insomnia, gave me melatonin, never questioned the destruction I wreaked on my walls when rather than walking around town, I sat inside, taping pictures to the walls in massive, intricate collages.

In retrospect, I think I made my sleeplessness pretty easy for them. And they were mostly understanding about it, even if they never understood its scope. I didn't sleep at night, most nights, for any useful amount of time, until I was twenty years old.

When I finally did start sleeping, I had nightmares. Every night. It wasn't until more than two years later, when M came into my life, that I finally learned what it was like to just sleep. Something I hadn't experienced in more than thirteen years.

I think about this, now, because SI has started having trouble sleeping. Real trouble sleeping.

Sometime between 11 and 12, most nights, she comes into my room, struggling to find an excuse. Her go-to excuse is, "I'm scared of the dark."

The fact is, I know this is not true. I know she is neither scared of the dark, nor relegated to it. She has a night light gummy bear who lives in her bed. If she were scared, she would turn it on. She would turn on the light. She would be scared. But she's not. She comes in and says, "Well..." and then begins her attempt to make an excuse for being awake.

I try to be patient, but I am not ready for this. She is five years old, and she does finally go to sleep. Every night. But I can see it coming.

I can see that sometime in the nest few years, it's going to happen. SI will lose her battle with sleep, and she'll be a confused kid, trapped in a silent house, alone with her thoughts. As a little kid, it's agony. Knowing you must be silent. Knowing you're no nearer to sleep than you are to morning.

She loves to read, so she has that going for her. But I don't know what to say. I don't know what to do. The world has changed since I was a kid. No way in Hell am I letting any child of mine wander the streets of Chicago by night, so different from Ann Arbor in the 90s. But I cannot stay up with her each night, drinking warm cups of milk and reading books.

Some nights, yes, I can do that.

Because some nights, yes, I still don't sleep.

But I don't want this for her. I don't want decades of insomnia for her. I don't want the attendant depression and anxiety that come from constant fatigue. I don't want the regret, I don't want her to feel like there is something wrong with her. I don't want her to feel like she'll never be rested again. I don't want any of that for my daughter.

But on nights like that I want to tell her, "Someday, when you're a grownup, you'll be able to sleep." And what comfort is that to a child of five? What comfort comes from knowing you'll be old enough to have children of your own before you can finally enjoy the benefits of actually sleeping?

Last night I was awake long after SI. Laying in bed, anxieties plaguing me, alternately reading and playing Tetris.

Me and SI taking selfies (and M photobombing them)

Maybe next time she comes in at 11pm, I'll send M to the couch. I'll let SI lie down in the bed with me and talk through everything that's busying her tired brain. Maybe I'll take her to the living room, tuck her into the couch, and give her a shot glass of schnapps, "To sip slowly," and hand her a book a few grade levels beyond her abilities to struggle with and conquer before dawn.

Maybe next time, I'll curl up with her on the couch, and put F Troop on TV and watch until the sun comes up.

Maybe during the next Parent Teacher Conference, I'll tell her teachers to be patient with her when she's tired, because there is nothing I know to do to help her sleep.

Maybe this is one of those things in life I knew would come, these personal battles I just can't fight for her.

Maybe all I can do is be understanding of her when she weeps over nothing throughout the day, just too tired to behave, when she screams at her baby sister from the exasperation of the exhausted. Maybe all I can do is let her not sleep and love her so much that she always feels she can snuggle on my lap when she needs a rest.

It might not get her through high school, but it might get her through learning to live like this.

Maybe all I can do is be her mother.

The Twilight of Doubt

We were most of the way between lunch in Eau Claire with M's cousins and dinner in Milwaukee with a deploying friend. In the hour before, the sunset stretched from horizon to horizon. Bright purples and reds and orange puffs of clouds, hovering over fields glowing gold beneath the sky. Now the sun was beyond the treeline to the west, and a deep rainbow still clung to the air where it submerged, casting a warmth to the wintry purple of the sky ahead.

RH couldn't see the pages of her Pocoyo book, and she called to me from the rear of the car.

"Mommy, can you make the sunshine come back?"

Oh, God, how I wished I could.

I wished I could make the sun stop and go backwards, and spin the earth the wrong way round, until time reversed itself and I could freeze it exactly where I needed it right then.

I would spin the earth backwards 2735 full rotations, and freeze it on a sunny day in July when the heat danced on the outside our basement apartment, and M and I lay beneath the mid day glow of summer- wrapped in each others love and the endless flavors of possibility.

I would never give up the now; the dark, cramped, cold hours on a freeway between family and friends, after the chaos of the holidays has mostly passed, with the same awful rendition of The Alphabet Song playing on a loop from our back seat for eight hours and then some, winding out the gloomy December day.

I would never give up the darker times that always seem to follow the bright.

I would hold onto those hours after the Christmas presents were opened and the house was asleep, where I lay in bed and cried silent tears because it had been so good. It had been so joyous, and full, and there had been so much laughter and so much love, and if this was his last Christmas there was nothing anyone could have done to make it better.

There was nothing anyone could do to change it that would make it less painful in future years, if this was his last Christmas, so I cried because I wasn't ready for the best to be here. I bit my knuckles while my tears flooded my ears and I waited for Xanax to calm me to sleep, because these are my dark times. The moments the not knowing, the endless not knowing, is so much I can't bear it.

If I could bring back the sunshine, if I could make the sun come out from behind the clouds...

On the heels of every happy moment doubts follow me.

When I collected his photograph from the studio, framed and matted with its velvet backing, I cried. The nice girls in the nice shop smiled kindly, used to weeping mothers and wives who come for their happy memories.

I cried for the child in the picture, the toddler with her lips pursed, ready to kiss her daddy's cheek, because we don't know. For another few hours yet, I won't know. I'll sit in the friendly lobby of the MRI suite and not know until the news is ready. And this month I'm worse at waiting. This month I'm frazzled from lack of sleep and a house knee deep in empty cardboard boxes from Channukah and Christmas presents that are somehow already broken or lost and replaced again. I have an image in my mind of a toddler grown into a girl whose best memory of her father is a framed photograph of how much they loved each other when she was small.

She asked me to bring back the sunshine, but I have no power over light. I have no control over tides and clouds and microscopic infiltrations of a tumor we beat years ago, like a vampire chased away but never killed. Whose ashes we never sprinkled into running water to ensure they would never return.

It's a specter of destruction, our unknown, and some nights I laugh louder and drink faster and dance harder and hug tighter and read all the stories that mock the darkness and do the funny voices for the children. Sometimes I find myself teaching them to laugh at shadows, to find familiar friends in their darkness, because I can't bring back the sunshine.

The children spent their vacation in Minnesota climbing all over their father. Burying him in pillows, playing catch with him, chasing him around the house and snuggling onto his lap. As though somehow they shared the dull anxiety I carry increasingly longer and sooner before these days that I wait and our friend the oncologist can wash it away.

I can't tell myself any longer that each time is the same, that one day it will be different. The truth is that every time is different now. Every time we're waiting to see if THIS is the time, not that there's something, because now there will always be something, but that there is enough something. That it's time again to pick our poisons and spin the roulette wheel of radiations and surgeries and consultations and brave faces.

My brave face is always on for the children, always firm but kind as I say with a sigh that I can't bring back the sunshine. But I wish I could, honey. I wish I could.

If I could spin the earth backwards around the sun, I would go back to the sunny days when he tickled his daughters and they laughed and squealed and jumped all over him because they love him so much, and no matter what the stresses at work he knew everything was worthwhile.

I would go back to the mornings we lay in a different bed, the sunshine coming under different curtains, and listened to our children laughing. Listened to them singing their songs, and telling their stories, and laughing with each other; and us, aside. Other. Clockmaker parents in the sunset of greatest joy I never knew I could imagine.

I would stand outside of those moments, after spinning the sun, so I could always know. This is the thing we chose together, these children we had no idea we could love so much, these girls we didn't know would have the sweetest smiles and the brightest eyes, who would look so much like us and yet like only themselves, who loved us so intensely. Who love him so much they could never understand why I lay in the dark and cry over happiness.

Not from happiness.

But because it's not fair. It's not fair to see the sunshine, to see it shine so bright and so warm and know the day will end. It's not fair to choose between long afternoon naps in a family puddle and adventures outside with the sun on your cheeks.

It's not fair to see them love each other so much and know that it's going to end. Someday it's going to end. Someday, the news is going to be so bad I'll have to stop laughing into the oncoming darkness.

And if I could bring the sunshine back...

If I could only bring the sunshine back...

"Mommy, can you make the sunshine come back?"

As simple and straightforward as passing her a bag of crackers, or picking her book off the floor. Because I'm Mommy, I'm the omnipotent creator of darkness and light, of food and clothing, of routine and chaos. To her, I am just as capable of bringing back the day as of opening her juice box.

I am the man behind the curtain, pulling levers to emit puffs of smoke and the rumble of thunder, crying myself to sleep when the children are tucked into bed. Because I can't bring it back.

This might be twilight, but night is coming. And I have no way of knowing if tomorrow the sun will shine again.

Teaching Through Trauma: Sexual Violence and Sex Positive Parenting

You may recall that over the summer I caused a bit of a stir with my article, "Sex Positive Parenting, or, We Don't Touch Our Vulvas At The Table." In that post I talked about sex positivity and not shaming children for exploring their bodies, and how honesty empowers and protects children.

I've done a lot of talking about this in the months since. I've spoken at conferences, gone on the radio, interviewed on podcasts... it's been a wild ride.

But part of what I've been doing has been very quiet. And that's what I'd like to talk about now.

Since that article came out, people have been writing to me to ask advice on how to talk to their children about sex, with massive caveats.

Parents who were victims of childhood sexual assault.
Parents with children who were born from rape.
Parents with adopted children who came from a foster system that permitted gross sexual misconduct.

I had advocated honesty, total honesty, about sex and biology. I talked about explaining IVF and cesarean sections to children.

So what about these questions? What do you tell a child, honestly, when the honest truth is both horrible, and unacceptable?

I spent a lot of time thinking about this.

I always told those parents at least one thing, "Whenever you are ready to talk to your child about this, make sure you know that it is not their fault. Make sure you let them know that, no matter what happened to them, or to you, they are not to blame, and they are not diminished by having this as part of their personal history."

I recognized as I wrote these words, in endless variations, over and over again, how little they could do to heal the gaping wounds their parents have.

But as more and more parents wrote me, I felt more and more the need to discuss being sex positive with children in the context of a world filled with sexual violence.

You see, in addition to talking about sex positive parenting, I'm a member of the RAINN Speakers Bureau. I talk to groups of teenagers about rape culture and sexual violence. I talk a great deal about consent and power dynamics and the reality of rape versus the popular mythology.

And I always explain, when talking about sex positivity, that this is a way to protect children from rape culture. That when you empower children with the correct names for their organs, and an understanding of what is and is not appropriate, you can protect them from becoming victims. And more importantly, you can stop them from becoming predators.

This is little comfort to children who are already, in some way, victims.

So when speaking to a child about human biology, about how a sperm must meet an egg, and how that sperm usually comes out of a penis when it is inside of a vagina, is that the time to talk about rape?

As much as I, as a parent and a human being want to say no, it's not the time, I can't. I think that it is the time.

I think sooner is generally better, within reason. I wouldn't attempt to explain rape to two year old, but when a child is able to intellectualize human reproduction, I think it's not too soon to come clean with the facts.

And the facts are this- reproduction is beautiful. It is intimate and loving, it is a way to show that you care, and that you don't want to hurt somebody. Just like a hug, or a pat on the head. But sometimes, people do violent things that look like nice things. You can hug somebody too tight and hurt them. You can hit, instead of patting. These are things nobody should do, and that all of us must learn not to do. But sometimes, people do these things. And sex and rape are like that. Rape is not sex, it is turning sex into a violent act. The way a slap and a pat on the cheek are not the same, however closely they may seem to resemble each other in their mechanics.

These are comparisons a child can understand. And so long as the explanation of what rape is, and how it is related to the reproductive process, blame and shame for the child can be minimized or eliminated.

The problem is, rape is shameful. Not for the victim, but for the rapist. It is a shameful, awful thing to do to another human being, and yet people do. And because of the profound shame and discomfort regarding sex we share in our culture, the shame and blame is often misplaced onto the victim. This happens not because it is shameful to have been raped, but because as a culture we are all so afraid of sex that we cannot distinguish between an act of affection and an act of violence.

Telling a child that they are the product of a rape is never going to be easy. It should never be easy, because talking about sexual violence shouldn't be easy. But we still need to do it.

We desperately need to do it. Especially with children.

I've heard the advice, especially among adoptive parents, to associate the rape with the birth mom. To make it about her, not about the child. I understand this impulse, but to me it reeks of victim blaming. We should never associate a crime with the victim, always the perpetrator.

I have a confession. Until I began working on writing this post, months ago, I had not talked to my five year old daughters about rape. Not explicitly. I had done it obliquely, in terms I thought they would understand. I explained rape culture in terms of "hurting" rather than "sexual violence," because explaining to my children what rape is was something that I thought could wait.

I don't think it can anymore. Not as I've forced myself to sit down and read letter after letter from parents who can't wait. Who don't have the luxuries that I do.

And so, I told my daughters about rape. The five year olds, not the two year old. We read "Where Did I Come From?" and I paused after we finished the page that describes sex.

"You know," I said, "Sometimes people do that to hurt each other."

SI looked at me like I was insane. "They do. Sometimes, one person will want to do that, and the other doesn't, and it hurts them. The book says it feels good, and it does, when both people want to. The way hugging feels good. But it doesn't feel good if your sister chases you and pinches you, right?"

"I don't like that when RH does that," DD agreed.

"Yeah. So sometimes, people try to do that to other people who don't want to. And that's not okay. That's not the same thing as sex, it's something else entirely."

And we moved on.

I didn't use the word "rape." As I've discussed before, it's a hard word to use. I've gotten better at writing it down, the more and more and more I practice at it, but it's so much easier to write "rape culture" than it is to write "rape." And it is infinitely more simple to write than to say.

I did not use the word "rape," and I did not say that it had happened to me. Although I know if I'd let the conversation linger, the question would have come up, and I honestly don't know if I could have answered it.

I really, truly, genuinely don't know.

But this is important. It is vital that our children know what rape is, and that it is fundamentally different from consensual sex acts.

I can't recommend my script, because it is still full of holes. I still have no idea how I will one day tell my children that I was raped, twice no less. But it's something I've known since before I became a parent that I must do.

I, and all parents who have survived sexual violence, need to be the face of survival for our children. Not because we choose this, but because we are and always will be their role models. Because what we say and do is what they believe is the right way to say and do anything. And if we maintain a silence about being assaulted, we teach them that what is right and proper is to be silent. But it is not easy. It is never easy.

And if I cannot tell them this without the constant weight of my own misplaced shame, what would I tell them if they were born because of rape?

I know I would tell them that it wasn't their fault. I know I would tell them that I love them, and that nothing that anybody did to me before they were born has anything to do with who they are now.

And I know I would try to have those conversations now, while they would simply inform the facts of their existence, rather than complicate their already difficult adolescence when they must somehow correlate the facts of their burgeoning sexual identities with an understanding of the nature of the act that created them.

This is not easy. This is not simple. This is not fun. There is no solution to how to teach your children something traumatic. Ever.

There is no easy way to explain death. To explain that yes, someday mommy and daddy will die. Yes, someday they will die.

There is also no easy way to explain that human beings are capable of profound suffering, and worse, inflicting it upon each other.

The one question a parent asked me that truly haunts me is this, "There was a line in your blog about how only your daughters have the decision to have sex, but obviously that is not true in the case of rape. I know someday I will have to explain that women are supposed to have the right, but they don’t always. Any thoughts from you in this case?"

My thoughts are these- rape is not sex. The act may look similar, but it is not the same.

There are many ways for a baby to come into the world. They all begin the same way- sperm meets egg. But that can happen in so many ways.

Sex. IVF. Intrauterine insemination. Rape.

None of these are the same.

It is not your doing if your were born thanks to IVF. It is not your doing if you were born as the result of rape. You do not carry the weight of that act. You are loved. You are so loved. And when you are old enough, you will know the difference between what is affection and what is abuse, and in that way you are more than anything that came before you. You are empowered and precious.

This is what I would say, my thoughts.

To those parents whose children came from sexual assault, I would say I have no idea how difficult this conversation will be. I cannot begin to imagine how painful it will be. But remember, the fault always lies with the person committing the crime. Not you. Never you. And not your child.

We can be honest, even if it hurts. We must be honest when it hurts.

Especially when it hurts.

Because children are not obtuse. They see us struggling with our honesty, and it teaches them something important. It teaches then that no matter how hard honesty is, it is essential.

When we are uncomfortable, or in pain, and continue on- it teaches them about bravery.

They are watching us all the time, and they are always learning.

Let them learn the unspoken. Let them learn how utterly horrifying rape is by watching us struggle to even say the word. Let them learn how important it is not to use reproduction as a weapon by seeing how repulsed we are by it. Let them learn how much we love them by holding them and loving them through our own pain and trauma.

Let them learn bravery by watching ours.

I will keep trying. I will keep trying to do better.

And keep sending me letters. I will read them. I always read them. And if I think I can help, if I think there is anything I can do to lesson your burden, I will.

I hope someday, that is a lesson I can pass along, too.

Bald and Bare

My husband is bald.

He's been bald before. And he's a good looking bald man. But people who know him ask quiet questions.

They know things have changed around here, in regards to the tumors. They know we're on higher alert, that we still haven't balanced seizure medications. That we're getting more frequent MRIs and now EEGs and that things are not as constant and simple as they had lulled us into believing they were. Each time I think about how much time has passed, I can't help but recognize how unfathomably fortunate we've been. Seven and a half years. We've been doing the astrocytoma thing for seven and a half years. And I haven't seen M bald for seven of them.

M's hair never really grew back quite right on the radiation side. And it's been thinning rapidly over the last year or so. So M made the call to bic the lot of it- return to the cue ball aesthetic.

It works on him, the handsome devil.

But it means things. It must mean things.

No matter how shapely his skull or how bright his eyes, people wonder when they see the scar.

He's fine. He's fine. He's fine.

(Part of a panicked part of me deep in my chest wants to scream, He's NOT!, and I ignore that. Most of the time.)

He's fine.

We're cutting our Christmas in Minnesota a little short for him to make it to his next set of MRIs, to make sure he gets them before his doctor has her baby. Because you accommodate your friends like that, and M's neurology team, they're are friends.

We've known them for years. Years. And we all know that really, M is fine.

(Even if the RNs we joke with suddenly seemed stone faced and breathless when they ordered more frequent tests. That was just me seeing it, right? That wasn't real. That wasn't what was happening. That was nothing. I don't have to think about that.)

He's fine.

And let's face it, the baldness works for him. He's tall and handsome and manly and broad, his eyes are brighter when they're not competing with his receding locks. They twinkle brighter. His eyebrows seem darker, more dramatic. Sexier, even.

Baldness works on that man.

I had worried that the kids wouldn't recognize him. The toddler, anyway. I worried she'd freak out when Daddy appeared looking like a bad rendition of himself. But of course she didn't. Instead, M stormed into the kids' bedroom, and announced, "Guess what? I wouldn't let Mommy brush my hair, and look what she did!!!" Today he even helped me get them all to agree that really, they could use a trim, too.

(What's good is now they see him bald and normal. Now if the tumors are growing or back he won't have to lose his hair, and he'll look normal to them. Now if he's sick and he gets sicker and I have to tell them about how sick their daddy is, at least he'll always look like Daddy to them.)

He's fine.

I like it. He likes it. He likes that he can snuggle up under my million of blankets with me and not overheat, now that his excess heat escapes through his giant hot bald head. I like that I can warm my hands on it, as I sit up holding my kindle after the kids are asleep.

I like tracing my fingers over its topography.

But it does kind of feel like I'm losing something. This isn't like last time he was bald. This time the hair is really gone. There's no hope that maybe it will grow back. Of course it won't grow back. Thirty two year old men who go bald don't suddenly have their hair grow back.

No amount of hair clubs for men can make it grow back. And that's okay, because this time it's not chemo and radiation making it fall out. So that's okay.

M's first bald day, seven and a half years ago

M was never scared of aging. Aging is a triumph for him, his little "Fuck You" to cancer. He loves the affectations of middle age, which are more hipster-ish and honestly sexy on him than he would dare admit. Age is a triumph for this man.

(But suddenly it's not for me, because it doesn't matter if he's young or if he's old. I don't want to lose him either way. I don't want to lose him to cancer or seizures or Alzheimer's or heart disease or diabetes or anything. I don't want to lose him period, and if he gets old someday he has to die.)

He's fine. He's a fine bald man. A foine bald man.

He's my gorilla bear. Just a little less furry. He's my favorite man. He's my favorite human.

I can not panic. I can differentiate between irrational hysteria and what truly is.

(It's not hysteria if it's true. It's not hysteria if it's right.)

Still, as always, I am comforted by that little voice of panic. Because I know something true about myself- when the shit gets real, I am a rock. I am solid. I am unyielding and unbending. I take care of what has to be done. I take care of it. If the panic is there, things are okay. things aren't so bad. I have the luxury of harboring a few waves of fear.

Because M is just fine.

Drowning in the Creep

M and the kids tracking each others footprints in the snow on Thanksgiving

I love Thanksgiving. I've always loved Thanksgiving.

For Thanksgivukkuh last year, I bought my kids a wonderful book- "Rivka's First Thanksgiving." In the book, a little girl in Brooklyn learns about Thanksgiving, and convinces her orthodox Lubovitch community to celebrate the holiday.

Because as first generation immigrants to America, the story of being welcomed in and protected by a new community spoke to her.

And being immigrants fleeing religious persecution in Europe, the story spoke to her more still.

In many ways, Thanksgiving is like American Passover. You gather with your family to recreate a meal, a meal where peoples of different backgrounds came together to celebrate that they would survive. Squanto was like Moses to the Pilgrims, and Moses would have been a stranger to the Jewish slaves.

It's a lot like Passover, really. Almost uncannily. Except instead of an afikomen, you get pie for dessert.

I love Thanksgiving.

On Amazon!

Which is one reason I can't stand Christmas Creep.

For many people, Christmas is the only thing they seem to like about Thanksgiving. For many people, Thanksgiving is wonderful because it gives them permission to stop holding back in their Christmas zeal, and the minute the table is cleared after dinner it's time to ring those sleigh bells and move onward towards the real winter holiday.

Only the thing is, unlike Thanksgiving, not all Americans recognize Christmas.

Thanksgiving is wonderful to me in that it is so comprehensively American. From Turkey tamales to three sisters stew, from pumpkin crumble to persimmon pie, every corner of America is filled with people celebrating what might be a largely fictional story, but is a fundamentally hopeful one.

Christmas? Not so much.

For me, as for most non-Christian Americans, Christmas is an annual giant, exclusive party that seems to grow by a day or so every year.

And I had no idea how much more lonely it would be for me once I had interfaith children.

As you probably know, M borders on agnostic and I dabble with atheism. But we appreciate the traditions and familiarity of our respective faiths.

The historically Jewish city of Chefchaouen in Morocco-
where the Jews who built it so strongly identified with their heritage that they painted the city blue.

We always planned on celebrating Christmas and Channukah with our kids, and we've celebrated both holidays with them since the first. But the fact of the matter is, to be Jewish is to be excluded. Not just here, in the United States. Everywhere.

We, as Jews, exclude ourselves.

And in a way, I think that is what has allowed us to survive this long. As isolated strangers in non-Jewish communities, we have always excluded ourselves. Like Tevya says of the Cossacks in Anatevka, "We don't bother them, and so far, they don't bother us." Until of course, the Czar decided some bothering was due.

We carved our niches out of the communities we wandered into, and although we lived side by side, we lived separately.

Not so, in 20th and 21st century America. We managed to make ourselves seen, and heard, and somehow welcomed for the most part. We accepted the mantle of "whiteness" the civil rights movement offered us. We started seeing ourselves as Americans as well as Jews. Something we certainly never did in Russia or Morocco.

The blue streets of Chefchaouen

But part of the appeal of the United States, for all immigrants, has been that it is a country without a single faith. That it is a country without a unifying culture. That it was and has always been based on ideals of freedom from religious persecution.

And the fact is, to be so thoroughly surrounded by a single holiday that you do not celebrate is smothering. To be vilified as being a "Scrooge" or a "Humbug" for feeling no love for a holiday that means nothing to you is a form of duress. It is a culture that says, "Pretend you believe this, or you are not one of us."

For most of my life, that feeling of isolation and rejection for not trimming trees or writing letters to Santa was something that felt natural to me. That felt like as much a part of my heritage as the bland, mindless way the Shabbat bruchot came to my lips as a child waiting for Friday night dinner.

It is not the same now. Now, I have children. Children who love Christmas, and whose love of Christmas hurts me.

I feel petty and unkind and shallow saying so, but it's true. That I am and must be complicit in their affection for Christmas only makes it worse.

I have little love for Jesus, in whose name countless atrocities have been committed against my ancestors. In whose name, as a child, my best friend sobbed and begged me to convert, because she didn't want to go to Heaven if she knew I was going to Hell. I have made my peace with Jesus, for the most part, who I think was probably a man trying to do some good, if he existed, which I can never know.

But I don't understand what American culture has done to his birthday. And in his name.

I don't understand how Santa Claus came to be, or why I must lie to my children, in however sheltered terms, rather than saying what I know is true. But I continue to lie to them. I tell them that he is real to them, because they have somebody who loves them and wants to make him real. The way fairies are real to some people, when somebody loves them and wants to make fairies real to them.

It's a pretty lie. It's one that I had hoped wouldn't hurt me to tell. But it does. Because I cannot make Santa real. I can only drive this wedge further between my children and myself, isolating myself more and more from their understanding of the world and their understanding of mine.

Our friends, Santa and Mrs. Claus with their favorite elf, visiting our children several Christmases ago.
Friends who love our kids enough to make Santa real for them.

For me, and for most Jews, to be Jewish is to be excluded. It is to be separate, to use our own favorite turn of phrase, to be "Chosen."

Part of what we choose is this otherness, and I wonder if my sister wasn't really right when she warned me about having children with a Lutheran.

"Can your children really be Jewish, if they grow up in a house that has a Christmas tree?"

I said I didn't care, but I know now that I do. I care very much. I want them to feel what I feel about my heritage, about my ancestry and my history. Their ancestry and history.

I want them to learn that part of being Jewish is being isolated from the larger community. That as welcome as we may think we are, we are always waiting for the tides to turn. I want them to understand that on Thanksgiving we are all American, and we are proud, and we are humble, and we are unified. But on Passover we remember that in every generation there comes somebody who would try to destroy us. That in every generation there is a genocide, and we have made it to this day by seeing the tides when they turn, and remembering who we are and where we came from.

When, in October, my children squeal with delight at the sight of Christmas lights in a store, I feel more lonely than ever in my life. My children, these people I made who shared my blood and my body, and will always share my history and my life, my children have been anxious for Christmas to come since that first sparkly snowman made his appearance on the Costco floor.

They gush about Christmas. They tell me what they want, they tell me they want to see Santa, they tell me they want to make Christmas cards and have Christmas stockings and a Christmas tree.

As they have had every year.

And I ask them, "What about Channukah? What about lighting the menorah each night? What about singing Channukah songs with me and Poppa?"

For them it's an afterthought. Something nice that will happen as well as Christmas. Not their isolated holiday warmth, not the oasis of familiarity in a Christmas dessert, where costume clad volunteers on the public train stare with fear in their eyes when someone responds to their, "Merry Christmas!" with "Chag samayach to you!"

They learn that fear young. "Did you know?" an eight year old friend asked me, her face pale and numb, as we arranged Barbie shoe filled traps for each other on her bedroom floor, a la Home Alone, by the light of the garlands strung down her bannister. I was too ashamed to speak, now part of the mechanism that had built and shattered what would become a formative childhood experience.

It wasn't that I didn't believe, it's that I knew the truth. And the truth was my parents kindly but sadly explaining that I should not tell other children the truth. That I must distance myself to protect them. That my distance was essential to their happiness.

As a child, I resented Christmas, and I could not escape it. I could not escape singing Christmas songs at my public school. I could not escape the constant talk of what Santa would bring to other children, and not to me. I could not escape the ornaments and tinsel in every grocery store, on the light poles downtown, on the bulletin board outside the Principal's office. I could not escape the trees, covered in candy canes or tiny toys, standing resplendent in all my friends' homes- shrinelike on their velvet skirts, revered in their untouchable beauty. I could not escape the Christmas stories on my television, every beloved character celebrating the very holiday that excluded me, until I couldn't bear any longer to watch even the Muppets imply that I, like Scrooge, was a "humbug."

For me, Channukah became meaningful not because of the story, a military holiday as opposed to a religious one. For me, Channukah was meaningful because after all the loneliness and sadness of my friends slowly distancing themselves from me, I found myself surrounded by the familiar songs and faces and foods of my people. My holiday. My little light in the winter dark.

Now, as always, my friends are beginning to shrink away. Earlier and earlier every year, with facebook quizzes about "Holiday Movies" based on "It's A Wonderful Life" and "Miracle of 34th Street," as though by erasing the word "Christmas" from their enthusiasm I can join in, I can pretend that my own experience includes Santa Claus and Christmas Miracles, as if just by being American I must be part of this, as though despite making myself visible as someone "other," I am at fault for neglecting my cultural duty to watch the Greatest (Christmas) Films Of All Time.

I find myself less patient with my inability to participate. I find myself feeling like a liar more and more, even as I tell my children that Santa is only real if somebody makes him real for you.

"I can't make Santa real for you," I say, and this is also a lie. I am complicit. I am the one who fills the stockings when their backs are turned. I am the one who lies by omission, by saying that Santa is real for anyone, ever, when Santa is a fiction who brings comfort to the majority of our neighbors, but only ever hurt me. Only ever guilted me into prolonging the moment when my friends would be crushed by the destruction of their happy fantasies.

The truth is that I don't want my kids to believe in Santa. Not because I don't think they can't really be Jewish on a fundamental level if they have a Christmas tree in the house. I think that it's hard to really empathize, to really understand who their ancestors were and what they faced if they don't understand what it is to be other. To be excluded and to understand that purposeful exclusion is a threat, but at the same time that self imposed exclusion can be safety.

Jewish men praying under guard in a Polish shtetl in 1940

Last month, the children cheered when they saw a Christmas tree in Costco, and I ignored it, stony faced.

"Is Christmas soon?" they asked, eagerly.

"No, first comes Thanksgiving. And then Channukah," I said.

"So why are there Christmas trees?"

It was a simple question, and I answered it simply.

"Christmas Creep."

"What's Christmas Creep?"

"Christmas Creep is when people are so excited about Christmas, they forget there are other holidays that other people celebrate. Including Thanksgiving, which is next."

"Why do they forget there are other holidays?"

"Because they don't need to remember, sweetie," I said, sighing, pushing my cart into the cold parking lot. Pushing it past other carts laden with trees and lawn reindeer and mountains of tinsel.

They don't need to remember, but I do. Jews do. "Never forget," and all of that.

The truth is that Christmas Creep isn't just about forgetting other holidays, it's about forgetting other people. And worse than that, Christmas Creep is about forgetting Christmas as well.

My husband, the Lutheran, hates Christmas Creep more than I do. For me, it's a familiar angst. For him? It's a reminder of what is constantly being lost for people who DO celebrate that particular holiday.

M tells me that he didn't really learn what Christmas was about until he was in college. An adult. Until he left home, Christmas was about getting. Now, he says, Christmas is about family, and love. Seeing his cousins in Minnesota, who he sees so painfully rarely. Seeing his aunts and uncles and remaining grandparents. Meeting babies and seeing how absurdly much children have grown. Physically being with the people you love.

But it's hard to explain that to a child through the haze of tinsel and and the twinkling of fairy lights.

Just under half of M's family (half of them)- an eight hour drive away

M can't stand the Christmas Creep, not because it makes him feel alienated from the world around him, but because it makes him resent the waves upon waves of distraction from what he actually cares about.

Neither of us are likely to jump onto the Holiday Fever bandwagon before we've thoroughly enjoyed our Thanksgiving weekends. Neither of us are eager to give up time with our families to buy things we don't necessarily need for a holiday we feel, in the case of both Christmas and Channukah, shouldn't be about presents anyway.

Despite this, M loves Christmas. He loves putting on his cheezy Christmas sweater, drinking quarts of eggnog with a grin on his face, hanging a wreath on our front door. He loves the lights and the stockings, the tree and A Muppet Christmas Carol. He loves gingerbread houses and red and green m&ms on Christmas morning.

I've always known Christmas was important to M, and it never bothered me. It still doesn't. I love seeing him happy, and I love making him happy. I go to church every year with his parents, smile and shake hands with the pastor, sing along through all the carols. The first date I ever took him on was after he came back from spending Christmas with his family. I drove him up to Sauganash, and parked the car, and walked hand in hand with him in the snow through a magical world of Christmas lights brighter and more complex than any in the town where I grew up.

And it was beautiful and romantic, even to me, somebody who doesn't care about Christmas.

I understand that there is something special about Christmas for people who do care, and part of me has always been dedicated to helping M create that magic with his children. Who also happen to be my children.

And M has been equally understanding when it comes to my need to pass along traditions to my children. He has agreed with me on the importance of a Jewish preschool, not for religious indoctrination, but for the introduction of a long and complex history we both want them to know. He has been at every family seder, cracking jokes about gefilte fish and still eating it. He has learned the Shabbat bruchot, and sings them with more enthusiasm than I did at our children's age. And it has also, in a way, pained him. And I know that.

Some of M's relatives like to wear shirts with slogans like, "Put the Christ back in Christmas." And both of us are all for that. Because it's honest. Because Christmas isn't "the reason for the season," but Jesus is the fundamental reason for Christmas. And the more we as a society get back to remembering that, the less Christmas Creep we'll have. The less we'll be constantly bombarded by messages to buy buy buy buy buy, and the less I will feel like I have to protect my children, not just from losing their sense of their cultural identity, but from losing ANY sense of cultural identity.

M and the girls watching football before Thanksgiving dinner, while Grandmommy and I cook and chat,
and my sister and Poppa take turns napping away what ails them

I know that M often feels that he has no cultural identity. That compared to me, a person from a self-excluded group, a person who deeply feels tied to history and culture that make me unique from society at large, he occasionally feels bland. Empty. As though his own culture has nothing to offer but Hallmark and Black Friday.

He struggles with putting to words what his culture is, besides being White America. He is like a fish who cannot see the water, having lived it and breathed it beyond the limits of his own existence. And he is learning, but it does not help him define it.

It does not help him explain to his children, my children, what is and is not meaningful or important, what is or is not a privilege or an identity, what is and is not good or bad or empty fluff.

Nobody seems to believe that Christmas is about presents except children. But they're picking it up somewhere.

So what is it? Is it about Jesus? Is it about family, about sharing the warmth of love and joy and familiarity in the coldest months? Or is it about casting divisions between "us" and "them"?

I don't know. I may never know. I don't even know that I want to know. Knowing the meaning of Christmas might be a little too close for comfort to me. Having a true understanding of what Christmas is and what it means puts me so much closer to its epicenter than merely hanging stockings over my mantle, and lying to my children about the reality of fictional characters who brings gifts bought with my energy, my money, and my love.

I don't want to sympathize with Christmas Creep, because I want to be able to focus on the things that matter to me, and I cannot emphasize enough- that is not Christmas.

To me, Thanksgiving opens the winter, with welcoming arms and the promise that the winter will pass, that I will spend cold months ahead in the warm embrace of my friends and family, that the food will be abundant and the cheer even more so, despite the short days and the bitter cold.

To me, Channukah is a week when I reflect on winters past. When I gather with my family and share stories so old they've become legend; from the revolt of the Maccabees to one time my four year old sister forgot her lines in our family Channukah play and announced to our "audience" that her song was rewinding.

To me, Passover is about winter ending and spring beginning, with a warning. We survived another winter. Another spring has come. And again we must remember that next year might be different.

And in the middle there lies Christmas.

I look forward to the days spent in Minnesota, surrounded by M's family, who have become my family. I look forward to hugs and cookies and catching up on news. I look forward to laughing at M's aunt's inappropriate jokes, and drinking beers with his cousin on the farm. I look forward to seeing my children get to know their cousins, in whatever limited capacity they can with so little exposure to each other, and hoping that someday they will feel the bond of love and family for these people who share their history, their heritage, their genes, and their traditions.

Chicago's Sauganash neighborhood, where I took M for our first New Year's Eve together. To look at the Christmas lights.

I do not look forward to church, but I go because I am part of this family and I want my children to know that and to be as well.

I do not look forward to the endless Christmas trees on the street and non-stop Christmas Pop on the radio. I do not look forward to people I love asking my children about Santa, and building my complicity every time I keep my mouth closed in a smile.

I cannot look forward to Christmas, because before I am even ready to approach it, it's here. Christmas Creeping its way under my skin and fatiguing me before I can acknowledge it. By the time Thanksgiving groceries are bought, I am done with Christmas.

But I'm not done. I'm never done. I'm an American citizen, and each year Christmas is more American than apple pie for Thanksgiving dessert.

And now I am less done than ever, because each day my children see a new toy in a catalogue, and they want Santa to bring it to them, so I set them to the task of simply circling toys I know I have no intention of buying.

That I neither want to buy nor can afford.

That are as much the "reason for the season" as the yet unpacked suitcases from our Thanksgiving trip littering the foyer.

I am learning through my children what it is to be included in this holiday, and I fear it means I cannot teach them the benefits of the inclusion of exclusion.

I am teaching them the importance of family, and of sharing traditions with family, even if that isn't the lessons they learn about Christmas.

I am teaching them the very things about Christmas I despise each time I offer a Santa platitude. Yet I offer Santa platitudes, despite each word breaking my heart as it tears my children farther from me.

As my Lutheran husband would smile and shrug and say, "Diyenu."

M and RH last Passover

This is otherness in America. But what good is my exclusion, what good is my culture and my heritage and the relative safety of my isolated rhetorical shtetl, if my daughters are on the outside, while I am in?

If I can't embrace my otherness, what is left of my heritage for me to hang onto?

Is a Jew without her tribe a Jew any longer? Or am I something else? Something lost, and sad, grasping for an identity that can never be this version of American which only comes when the days shorten; or something hard, and cold, unable to find the warmth of any tradition when it's all obscured by the never ending "Holiday Sale" that sucks the meaning out of anything joyful?

If not even my children understand what it is to wander, but not be lost in the fold of their family, I am utterly alone.

And there will be precious little left to be thankful for in Novembers to come.

I will be a child again, standing back from a tree covered in toys I cannot touch, resenting it for bringing me no joy when the children around me gasp in awe.

Only those are my children.

And if they cannot know what it is to stand outside of Christmas and never come close enough to touch it, I fear they can never know me. And without my children to keep me warm, to stand by my side and hold my hands, it is a long, cold winter indeed.

Or, it's not.

Or, it's exactly what I agreed to a decade ago, when I felt myself falling in love with a man I took to look at Christmas lights for New Year's Eve. When I braced myself to feel exasperation and frustration on a cold walk on the last day of the year, and instead found pure delight and peace by looking at the smile on his face as he took in the displays.

I watched him grinning at the lights, and he said, "Thank you."

Because he knew I hadn't expected to go on that date to make me happy, but had done it for him. And he knew that seeing him happy was all I wanted in the first place, and getting that, I was also happy.

He and I agree that the best part of any gift giving holiday, Christmas or Channukah or any old birthday, is the moment when somebody you love opens the gifts and their face lights up. They are transported in their joy, and it is that joy, not the contents of the box, that you have given them.

It's a joy that knows how much you care. A joy that knows how deeply you love.

I love my children. I want them to experience joys I never did.

Our menorah, over our stockings and nativity scene

But it comes at a cost for me. It comes at the cost of becoming complicit in a lie that hurt me. In a culture that rejected me and laughed at me for being rejected. It comes at the cost of being part of the mechanism that perpetuates my own otherness, even, yes, from my own children.

It is a cost I accepted long before I had to pay. I still accept it. I am still learning to love Christmas, not for what it means but for what comes from it. Time with a family that is now my family, the beautiful joy of people whose love means everything to me, pretty lights in a dark, quiet street.

But I can only stretch so far.

The growing "season" overwhelms everything, including perspective.

I do have to remember- I do not have the luxury of forgetting other holidays, other people.

I see the water.

Broken

Last night, I couldn't sleep.

I tossed and turned, listening to the wind.

It was bitter outside, and the wind rattled my windows.

I kept thinking about the other places that wind was going. That same wind, chasing the storm that left my city frozen and wet and frosted.

I knew that same wind must be chilling the streets in Ferguson, which isn't far from here. I thought of the wind whipping through Ferguson, and how it would feel to be standing on the street in that wind.

It would be cold, bone chilling cold. Soul chilling. It would bite at exposed skin. It would howl.

I thought about how I might howl with it, in rage and confusion and pure hopelessness.

I thought about how in Ferguson, no amount of scarves or coats would make your skin feel less exposed.

Yesterday, a grand jury failed to charge the killer of Michael Brown with any charges whatsoever. There is no question that he killed Michael Brown. There is no question that Michael Brown was unarmed. That he was a teenaged boy, enjoying his last summer before heading off to college. That if he were still alive, he would be counting down the seconds until his first real break from the rigors of the semester ended, and he could go be with his family and enjoy the warmth of food and love despite the raging winds outside.

There is no question that Michael Brown was an unarmed teenaged boy.

A police officer shot him and killed him, and never has to answer to that again.

And here is why- white America is so frightened of brown skin that, whether or not it is reasonable or fair or realistic or humane, a white officer can claim that when a brown skinned person moves in their direction, it is a legitimate threat to their life.

THAT is the law. The law is that a police officer can use deadly force if they believe their life is in danger. And in this case, a police officer believed that an unarmed teenaged kid would and could have killed him.

That is a bad law.

More than that, it is a bad, broken way to live. We live in an environment where to have brown skin is to be a perceived threat. All the time.

We have criminalized brownness.

THAT is the law.

Of course there is no justice for the people in Ferguson. There is a broken law that protects bigoted ideas at the expense of real, human lives.

Michael Brown was a human being. It doesn't matter that he was black, or that he was male, or that he was large. What matters is that he was a human being, killed in the street, and that his killer did, according to the law, NOTHING WRONG.

It doesn't matter if he DID attempt to assault an officer. It doesn't matter if he DID rob a store. None of that matters. Because if they were true, Michael Brown should have been given the same protection as Darren Wilson. The benefit of the doubt. The presumption of innocence until proven guilty.

He will never be proven guilty, because he was dead before he could be charged with a crime.

Darren Wilson will never be proven guilty, because a grand jury determined there was no crime with which to charge him.

THAT is the law.

There is so much anger and resentment built up in this country. So much frustration and fatigue. Nobody expected Darren Wilson to go to jail. Nobody. But the least we could have done, as a community, was hold him accountable.

I understand the urge to break something, anything, when everything around you already feels so broken.

I understand the urge to watch something burn.

I understand the need to embrace the warmth of your fury when the wind is so cold, and with your hood over your ears you can hardly hear that there is somebody near by, offering to hold your hand.

This is not justice. It is not the law. But because the law is so broken, there is no justice. And if there is no justice, what's the point?

What's the point of obeying a law when by the default of your skin you're already guilty?

It's not right. It's not right to stand back and watch the world burn. But it's also not right to stand back and do nothing.

On Thursday, Michael Brown's family will have their first Thanksgiving without him. And every year, they will be forced to find a way to feel grateful, despite carrying the reminder that three days earlier, the man who killed him was cleared of any wrongdoing.

From NBC

This is our country. These are our values.

This Thanksgiving, all of us should mourn.

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.

A Very Scary Story

It was a dark and stormy night. Lightning flashed in jagged arcs across the sky. Thunder shook the walls and rattled the windows.

In the attic of an old dark house, three children lay peacefully sleeping. Their mother slept in a room only feet away, dreaming peaceful dreams. Her last peaceful dreams. Her husband was gone for the weekend, away to drink and laugh with old friends in a cabin on the Maine coast. Fleetingly, she had worried that he might be walking into a classic Stephen King story, but this was the real world, she told herself. Horror stories aren't real.

The floorboards creaked as gale raged on, masking the sound of thousands of tiny feet, even closer than the hallway beyond the bedroom door.

Dawn broke, and she heard light footsteps rushing past. A chill ran down her spine, and she shivered. It's just the children, she said. They're going to wake up Grandmommy and Poppa. I can sleep a little more...

She woke lazily, with no idea of the terrors the night had wrought upon her.

She scratched her head, lamenting how rarely she showered these days, and thinking that it must be catching up with her in the form of worsened dandruff. I'll be sure to take a shower today, she thought, ominously.

She entered the guest bedroom and curled up with her three beautiful children. Her fingers played in their thick mops of long curls, and she pressed her cheek against theirs as they laughed and kissed her good morning.

Snuggled up against them on the floor, talking with Poppa about their plans for the day, when Grandmommy emerged from the shower.

Her shadow fell long and black upon the carpet. The mother felt her skin grow cold, and shivered again as she reached up to scratch her head once more.

"I have some bad news," Grandmommy said, and the mother felt her heart freeze in her chest. Somehow, she already knew.

"No!" she gasped, "Please! Don't say it! Please no!"

Grandmommy dropped to her knees, her face ashen. With a shaking hand, she extended a wadded
tissue.

And inside...

"AAAAIIIIIIIII!!!!!" The mother shrieked, her shock and fear immediately plummeting to the horror of resignation. "Please no! Please, I beg you!"

But there was nothing Grandmommy could do. The mother opened the kleenex, her own hands trembling, and saw...

Lice.

The three children, their gorgeous, thick ringlets bouncing ominous close, ran towards their mother.

"What's in the kleenex? What is it? What's in there?"

"NOOOOOO!" screamed the mother. "GET AWAY FROM ME!"

"It's too late," Grandmommy lamented, her cheeks hollow, "You've probably already got them too."

"NOOOOOOOOOOOOOOOOO!"

In a frenzy, the mother ran to the store. Without hesitation she grabbed every box of NIX, every store
brand bug killing shampoo, stacks of combs, jars of mayonnaise, saran wrap... she stopped herself before adding lighter fluid to her heap.

She came home and stripped the bed. She stripped everything. Load after load after load of laundry, an ever growing mountain that she climbed with monstrous heaps of plus toys strapped to her back- a hopeless Sisyphus with itchy scalp.

She and Grandmommy shampooed the children, combed their gorgeous locks. Bug after bug tumbled out, caught by the sharp metal teeth of the combs.

Grandmommy smiled hopefully. "That should do it, right?"

But it was not to be. Day after day, the mother toiled. Picking nits, always picking nits. Changing sheets, spraying car seats and couches and tossing beloved toy after beloved toy into the hot dryer.

Grandmommy left, but the bugs remained.

Each time the mother thought she had finally rid her house of the pestilence, nits appeared. And the shampoo came out again, its acrid stench burning her nose and causing her heart to race in panic.

Grandma sent her and the children to a heat treatment salon, where they had their hair vacuumed and burned, and sent them home to boil their brushes and combs. And at last, the house seemed to return to normal. Finally, the bugs had gone.

OR HAD THEY?????

MWA HA HA HAHAHAHAHAAAAAA!!!!


Happy Halloween!