Creative Therapy

I haven’t been writing.  I mentioned that in my last post, The Wound, as well.  People ask why, and I have to be truthful… I have been immersed in serious, soul-searching, life-renewing therapy.  It’s intensive.

My therapist:

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The truth is, my writing is deeply rooted is some pretty painful places… I don’t know how to do it without connecting to the very center of that raw ache, and without naked honesty.  And for so many reasons, I just haven’t been capable of it for a large part of 2014.  But when it is simply too much to write the words down, I run straight into the waiting hum of my Pfaff. I have been holed up in my attic, cutting up beautiful fabrics into small pieces, and putting it back together to create something new, born of something else.

There is something so safe and so true in this act, I have found myself spending most of my time here.  Making dolls.  And purses.  And quilts.  And little snack bags.

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Often, with the meditative act of pairing one scrap of fabric to the next, I feel as if I may be stitching my own self back together.

It is amazing how finding the perfect fabric for the perfect head of doll hair can be a method of reconnecting myself.  And in that, I have had experiences in the last six months I never could have imagined.  Joining artist groups, sewing banners for a parade, painting rocks for a town wide treasure hunt, trading owl bags and quilts for facial cream and artwork, selling at holiday shows, being on TV.

http://www.wfsb.com/story/27353715/handmade-holidays-weha-artists-emporium?autoStart=true&topVideoCatNo=default&clipId=10836890

I used to believe that being creative was the same as being blonde.  Or green-eyed.  Or tall.  Some of us got dished out a whole lot more than others in the genetic pool we sprung from.  I must have waited in the tall girl line, and forgot about creativity….

Not so.

We have all been born out of creative energy… it is our life force.  Spirit.  God.  The very essence of who we are is this creative source.  Some were born with a deep sense of that energy within, and some have not fostered that connection.  Somewhere in their childhood, that place was snipped free, and we “uncreative” ones became untethered from the source.  Its tragic, and not without repercussions in our lives, to feel separate from the source of our humanity.

This may sound a little woo-woo to you all… and don’t worry.  Me too.  It’s coming from a woman who has spent a larger part of 10 years trying to scrub all things “spiritual” from my world.  More likely to spell out the word G-O-D than any choice four-lettered expletive.  And I have spent most of my childhood as well as adulthood actively rejecting all things Martha Stewart… including dyed wool felt and cotton batting and quilting thread.

Those eye rolls and f-yous are a part of my spiritual crisis now, and some of the reasons I am sewing up piles of little dolls and snack sacks. IMG_6769IMG_6770

I can revisit that later.  For now, I am relieved to just be writing a few hundred words.  And to feel that some part of my Self was stitched back together in the piles of fabrics and spools of thread.

So check out my goods… what has sprung from the therapist’s chair.

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Message me if you want any, or check me out at

https://www.facebook.com/media/set/?set=oa.302818606570850&type=1

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The Wound

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“The wound is the place Light enters you”    - Rumi

About a year ago, we were entertaining guests on a friday night.  I opened the refrigerator to offer my friend a beer, and the bottle seemed to launch itself at me from its overstuffed pocket and smashed to the tile floor, pulverizing in an impressive explosion of beer foam and teeny shards of glass.  One particular piece of miniscule shrapnel left the tip of my pointer finger bleeding, the glass stubbornly embedded itself deeper and deeper with each attempt to pull it out.  Eventually, my finger healed over the shard, and I had a tiny brown freckle at the tip of my finger.  It would give me a sharp, biting reminder of it’s presence once in a while, when any pressure was applied to my fingertip.  It was a part of me, this invader, a permanent wound lurking under a new layer of skin.  I lived with it there for a long time.  And then, many months later, I found myself in pain again.  My finger became red and sore, the tip got swollen and hot, and my body began to fight.  The eviction notice had been sent.

This process was shocking and sudden and a bit unwanted… I had grown accustomed to the glass, and did not appreciate the throbbing pain I was suddenly dealing with.  The expulsion was much more painful than the first moment it entered me and left me bleeding.  My body smartly worked that glass back to the surface of my fingertip, and in a moment of desperation, wanting to end the pain, I aggressively pinched under the enflamed tissue, hard and tight, and squeezed until the glass cut through the skin once again.   Finally rejected, I rinsed it away,  purged at last.

 

 

I have been silent.  Gone.

 

Things happened, and the pain swallowed me up for a while. And I am learning that I do not handle my own pain well.  I have no tolerance for my own tears.  My own suffering.  It simply does not feel just, when I am so aware of my privelege.  There is a magnitute of suffering outside my own sphere that I cannot comprehend…  So,  I have learned to be scornful of my wounds.  And now, that scorn has revealed itself… the dark truth of it’s nature.

We all have shrapnel, healed over and buried beneath our skin.  Words that carry shame and rejection, moments that violate and negate… these are the shards that cut deep and become a part of us, grown in.  We carry them until it is time.  When we are ready to let them surface, force them out, and bleed again.

But it is not the purging that transforms.

It is in the wounding.  The embedding. The healing.

In this spiraled process, we are found whole.

The Cure

We think we get over things.

We don’t get over things.

Or say, we get over the measles,

but not a broken heart.

We need to look at that distinction.

The thing that becomes part of our experience,

never becomes less a part of our experience.

How can I say it?

The way to get over a life is to die.

Short of that you move with it, let the pain be pain.

Not in the hope that it will vanish

But in the faith that it will fit in,

find its place in the shape of things

and be then, not any less pain,

but true to form.

Because anything natural has an inherent

shape and will flow towards it.

And, a life is as natural as a leaf.

That’s what we are looking for:

Not the end of a thing,

but the shape of it.

Wisdom is seeing the shape of your life

without obliterating, getting over,

a single instant of it.

                       -Author Unknown

The Little Bastards Won’t Die

It’s throw back thursday, and I’m a virgin #TBTer.

You know those moments where people tell you, “Someday, you will laugh…”

It’s time to start sifting through those stories, as part of my throwback thursday contribution.  Nothing insightful.  Nothing informative.  Just my stories, of survival.

Isn’t that what #TBT is all about anyway?  A way to show the world how things have gotten much, much better?  Here’s proof:

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It’s not entirely true that I have not engaged in throwback thursday.  I love throwing back.

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Ha.

 

This picture was taken a few years ago, in August, just a few weeks after moving to Connecticut.

 

We moved from a brand new home in the dry, dry air of Colorado to a green tunnel of humidity so thick, I swear it rained in my living room.  Like the rain forest.

We bought a house that was slightly older than brand new, it was built in 1929.  They didn’t have air conditioning in 1929.  A factor I did not thoughtfully consider as I planned and arranged this move back in Colorado in the dry, dry air of my well conditioned home filled with vents that pumped deliciously cold air into the atmosphere.

 

We moved in during a New England heat wave.  It was in the mid nineties, and everything had the texture of a wet tissue.   You can tell by how often I have mentioned the heat so far, that IT WAS HOTTER THAN THE SURFACE OF THE SUN.  A steam room, on the surface of the sun.

 

I linger on this misery because it was not the worst part of the moving experience, but it was the factor that I believed would break me.  The level of stress I had been enduring was extreme, (moving across the country with 3 kids, leaving my family and friends, Lydia’s emerging misophonia).  The fact that my bed sheets were sticky-damp before getting into bed and I sweat like a farm animal while I brushed my teeth were details that simply melted my coping abilities into a huge, slimy puddle of boob sweat.

Me:  200-13

Rick:  200-16

 

My mom, who came to help us.  Bless her heart:200-14

But the heat, it turns out, was not the driving force in this miserable scenario.

 

It was so.  much.  smaller.

 

Three days into a truly nightmarish move, my saintly mother was taking charge of the place as I fanned myself in a corner and fantasized about this:

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She was helping me unpack the kids’ bedrooms and sort their stuff.  We were closing in on the final boxes of clothes and stuffed animals and blankets, putting them into drawers, order was being restored… until she noticed my two-year old scratching her scalp.

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My mom parted her hair to take a look, and that is when this little bastard jumped out of Stella’s hair.  Jumped.  OUT.  And crawled across her new bedroom floor.

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LICE.

 

I felt the last of my mental acuity begin to circle the empty bowl of my skull, flushing out my sanity….I lost my mind.  I did what every parent would do first…

 

I googled LICE.  Bad idea.

Then I called the Fairy Lice Mothers, who tried to reassure me that everything would be fine.

 

Yes, there is a Fairy Lice Mother.

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She assured me, I  just needed to follow these simple, easy steps.

 

1. Place all pillows, blankets, hats, stuffed animals that my child had been in contact with in plastic bags for two weeks.

 

2.  Wash all bedding and clothing she has had contact with in hot water.

 

3.  Comb out her hair with their special comb (not the plastic kind) using only detangling spray and water… the poison is just that.  Poison.  And it doesn’t work.  Make sure to comb EVERY SINGLE STRAND OF HAIR from scalp to tip.

 

4. Comb her hair like this EVERY SINGLE DAY FOR TWO WEEKS…. and everyone else in the family too.

 

I literally went ape shit.  The lady on the phone did not know what to do.  I think I hung up on her.

 

If I had any real clue what lice was actually going to do to our lives for the next month, I would have needed a straitjacket and a hypodermic needle to subdue me… but I wasn’t far off.

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You guys, LICE IS THE DEVIL.

 

I am serious.  If you have not had to live in this particular nightmare, then you will simply shake your head in judgement of my melodramatic words, but I assure you, it is true. Especially when you have enough hair between the five of you to supply Lady Gaga with a years’ worth of wigs.

 

Lice is in fact, one of the ten curses in the bible, along with BOILS and LASTING DARKNESS and the DEATH OF YOUR FIRSTBORN.

 

Hmmmm.

 

I think our situation was made slightly more challenging, considering that Stella had been climbing in an out of boxes filled with ALL THE BEDDING WE OWNED for the past two days, and had recently found the dress-ups and put all of them on and then found the box of stuffed animals and set them up all around the house. And then rolled around in them.

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When we found the LIVING BUGS crawling in her hair, she had just been burrowing like a small woodland creature, into a giant mound of all of the clothes that my three children owned. The movers had so thoughtfully crammed it all together into several big boxes, and we had been sorting it all out.

 

And we did not have the washer or dryer hooked up.

Rick had to leave his new job that day due to “a medical emergency at home,” meaning:200-3

 

He swung by the local pharmacy, and picked up a bottles of poisonous pesticides to spread all over our children’s scalps (we ignored the Fairy Lice Mother and went for the kill).   And drove across town to pick up the Fairy Lice Mothers special comb at Aldo.

We spent three hours combing through Stella’s hair.  She was two years old at the time, and on a good day, I had to execute an elaborate hunt/stalk/animal take-down and then pin her in a wrestling hold to get a comb through her hair.

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So you can imagine how things went.  Outside on the porch in the sweltering, suffocating, steam room on the surface of the sun.

 

The instructions on the bottle said that Stella must wear the poison on her scalp for a few hours.  So, shaking from the exhaustion of scaring our toddler for life for the past three hours, Rick and I put a shower cap on her to try to keep her from rubbing pesticides in her eyes and put her in the car, hoping she would pass out from exhaustion as we drove around in the air-conditioning.

 

That didn’t work of course.  She screamed like the lice-potion was blistering her scalp the whole time, and I was terrified it was.  We drove home, and while getting out of the car, one of our new neighbors popped over to say hello.  He was in his scrubs, a doctor at the nearby hospital.  Rick and I, drenched in sweat and lice-poison, holding our daughter on the driveway, shook his hand and introduced ourselves.  We did not offer to introduce our daughter, and he did not ask about her.  He must have sensed something was going on….

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Welcome to the neighborhood.

 

I wish that was the end of the lice story, but it isn’t of course.  Because those little bastards DO NOT DIE.   They broke me, those blood sucking beasts.  They were the curse that inspired this picture, and many, many, many more nights like this one.

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I guess there is a lesson to be learned:   Always Listen to Your Screen Shot 2014-06-09 at 10.39.33 AM

http://www.fairylicemothers.com

Throwback Thursday, indeed.

Why I Do Not Teach My Kids To Respect Adults

 

Last week, I got into a huge argument with one of my daughters.  Big news, I know. It’s the end of the school year, and we are all limping to the finish line, barely in tact.  Actually, it looks more like this:

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This particular dear child had been demanding and sassy all week, and with every interaction,  I was barely restraining myself from losing my grip.  My patience for her pre-teen attitude had withered away, and so it happened… the inevitable freak out.

 

I yelled at her, climbing high on to the untouchable podium of parenthood, and told her that she was being rude, sassy and disrespectful.  I threw in the appropriate amount of veiled threats, couched with “YOUNG LADY” and “LITTLE GIRL”  and finger wagging.  I told her in no uncertain terms that her tone with me had better stop, or she would find herself without a lot of fun in the coming weeks.

I really let her have it.

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She burst into tears, of course.  And I was mad and prickly, so I was not in the mood to hold her while she cried.  I took some deep breaths, tightening myself for the onslaught of her righteous indignation.

 

But she simply said, “I don’t understand.”  I could see the sincerity in her brimming eyes.

 

This took me by surprise.  I had been explicitly clear.

 

“Why are you allowed to talk to me that way, but I am not allowed to use that tone with you?” she cried.

 

I flailed.  Something in her words went deep, and found a raw nerve.   I was shocked to recognize that I understood and agreed with her.

 

The fact that I agreed, that it made sense… it was too much for me.  I gathered my wits about me, raking in the reasons I should stand my ground.

 

RESPECT.  And ADULTS.  And AUTHORITY.  And RULES.  And RESPECT.

 

And she will be a TEENAGER someday.  Lord, save us.

 

The demand for respect as the adult won out, and I rose up to my feet, hands on hips, to tell her how she must show respect because I am her mother, and she is a child and she must learn to show respect to adults and people who have authority!

I am her mother, and I demand respect!

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She cried some more, and I felt like a barbarian, and we got on with our night.

I tried to move on, get over it.  I gathered evidence that made me feel justified.  I mentally reviewed all the gross memes on Facebook, about the “olden days,” and how kids were so much more respectful of adults… and what is the world coming to?  Like these:

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But there was this nagging knowing inside me, poking at the truth. I had been using a “tone” with my children over the past few days, or weeks even.  A tone that says, “I’m so tired of dealing with this,” or a tone that speaks, “You are annoying me!”  or  “Hurry UP!”  A tone of general exhaustion and irritation, where manners and kindness are lost in my coarse, tired demands.

 

I hear it in my voice, as I tell them to get in the car.  AGAIN.  Or pick up their back packs.  Or close the door.  Or go to bed. Or to stop FIGHTING FOR THE LOVE OF HUMANITY.

 

AGAIN.

I hear that edge creep into my voice, and it has stayed.  So even when I simply ask for a hug, or tell them goodnight, it is there.

I realized I have been commanding  my children to have more respect and more control than I posses.  I want my daughter to lose the attitude and that disrespectful tone in her voice, but I have been unsuccessful in showing her the same respect during these stressful and strenuous times.  Not only is our relationship out of balance, her disrespect was important for me to notice rather than rage at.  She stepped up and challenged me to investigate what I believe about respect.

 

So I have given it much thought, lately.  Respect is a word thrown around rather carelessly and is often spoken about with a very contemptuous and entitled attitude. There are many generations that believe that today’s youth have lost respect for authority.   And others who believe that respect is not freely given, but earned.

Social media sites are teeming with declarations like this, which serve to perpetuate ineffectual beliefs about respect.

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I was shocked to uncover some of my own privileged ideas about respect.  It isn’t something I would have been able to own, or recognize in myself just a few weeks ago.
I felt ashamed to recognize that I would not speak to my husband or a friend the way I had been speaking to my children.  In that admission lies the notion that my authority and superiority over them justifies my behavior… I felt sickened by the ugliness my inquiry revealed.

In my careful examination, I began to see deeply ingrained ideas about respect that do not serve us well.   So, I set out to redefine my beliefs about respect.

A reset button, of sorts.

#1  Respect is not a hierarchy.  There is no human being that deserves more respect and deference than another.  We are all deserving of basic politeness and compassion by virtue of our inherent worth as human beings.  Therefore, I do not believe children must show respect to their elders.  They must be taught that respect is at the core of basic human decency. Age is irrelevant.  One day old, or one hundred years old.  A homeless man or a wealthy billionaire.  A janitor or the President of the United States.   Their worst enemy or their best friend.  Their annoying little sister, and yes… their mom.

 

#2  Respect for one another does not mean you hold their behavior in high regard.  We can feel disrespectful about abhorrent and hateful actions.  For bigotry and scorn.  But even the perpetrators of actions we disdain should be treated with respect.  Because at the root of pain, anger, and negativity…there is a hurting person.  A person aching to be seen, to be heard, to feel loved.  And showing them disrespect as a human being only advances their hate.

#3  There is a difference between disagreeing/arguing and disrespect.  As a parent, this detail is crucial.  Because I must not view my child’s disagreement as a form of disrespect.  I want my girls to find their voice… to stand up for themselves… to bravely challenge things…to seek understanding.  I must not contradict this value with a demand for their agreement or silence. Honing these skills must start at home, with their father and I, people who will give them a safe place to practice respectfully disagreeing, taking a stand, advocating for themselves, sometimes forcefully.

#4  Respect is not earned.  It should be given freely, as it stems from the understanding that we are all parts of a greater whole.   It is our way of honoring the human experience, of employing empathy and compassion for every person we interact with.  It is an acknowledgement of the nugget of precious truth at our core… we respect others as we respect ourselves.   The level of respect you show others is a reflection of the love and honor you have for your self.

 

#5  Disrespect is a symptom.  Often, it is a reflection of poor communication or unexpressed, repressed emotion. It is an aching call to be recognized as valuable.  My daughter was being disrespectful to me… it was a reflection of the disrespectful treatment I was showing her… I was overlooking her.

We can never insist on more respect from our children than we are capable of manifesting for ourselves.

 

A week after our fight,  I went on a field trip with my daughter.   On the way home, we cuddled up in our bus seats, I pulled out a surprise stash of her favorite candy, and I fessed up.  I told her I was wrong.  I had not been treating her with respect.

 

This was hard.

 

I felt as though I was conceding some age-old battle between parent and child.  The fear tried to rear up, the fear that told me that if I do not command respect from my child without fail, she will grow into a teenage monster and make our lives a living hell.

 

So naturally, I stuffed myself with peanut M&M’s and shouldered on.

 

I thanked her for being my mirror, always showing me the way to a better self.  I told her how powerful she was, how I felt honored to be with her.   I promised her that I would be more mindful of the level of respect I show her.  I told her that I firmly believe that if you want to be respected, you must embody that respect for yourself, and then let it reflect in your treatment of others.

 

And we finished with a hug, some sour patch kids,  and the most important message of respect I believe can ever be delivered from one human being to another…

 

I see you, my love.

I really, truly, see you.  

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Disney’s Maleficent: How to Protect your Sleeping Beauty and Prince Charming

 

ma·lef·i·cent

adjective:

doing evil or harm; harmfully malicious

This past weekend Rick and I led our three little girls, popcorn in hand, to see Maleficent in all her red-lipped, menacing glory.

Maleficent was the quintessential villain that haunted my childhood dreams…those huge black horns,  green evil spells, spindly fingers and deep, wicked laugh…  She was just so unrelentingly vicious, and her unchecked malicious intent left its mark on my young psyche.

Hence, I couldn’t  resist bringing the girls to see my animated fears come to life.

 

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Disney did an amazing job, and all five of us loved her story.  I did not realize going in, that so much of the original story of Sleeping Beauty would be retold.  But most of the characters in Disney’s Sleeping Beauty also appear in Maleficent, making it a retelling of one of my childhood favorites.

When we got confidently settled into our seats, my four-year old with her blond pigtails and dimpled elbows sat on a booster seat next to me. And when she looked at me with her innocent, wide eyes I wondered what the hell I was doing, letting her watch this:

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I was that parent.  Ah, another opportunity to humbly swallow old judgements.

I pulled her into the bathroom, and while she washed her hands, I quickly explained that Maleficent was actually a mommy named Angelina Jolie. After her job pretending to be scary, she puts down her horns and pulls on her jeans and has dinner with her kids.  Just a mom.

I am happy to report that this strategy worked beautifully, as during the first scary/intense moment in the movie, Stella leaned in and whispered, “This mommy is really good at pretending!”

No one was scarred for life, and we all felt like clapping at the end.

There was just one part that made my toes curl and stomach clench.  One part in which I held my breath and felt totally conflicted.

 

Sleeping Beauty is kissed by the prince.

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Newsflash, I know.

Now, I do greatly appreciate the rewritten version.  In Maleficent, the prince at least hesitates.  He shows some misgivings and even protests, claiming that he and Aurora have just met, and they can’t be in love.

 

All good things, Disney, all good things.

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But he caves under the pressure and insistence of the three fairies, and Prince Phillip kisses the slumbering Aurora.

 

Knowing my little girls were watching this part bothered me much more than the fiery rages of Maleficent or the scary snarling animals.

 

Here’s why.

Disney’s Sleeping Beauty was released in 1959.

Disney’s Snow White was released in 1937.

Two movies, made a long time ago, portraying a man kissing a sleeping woman. Now, I realize that this kiss was an essential part of Sleeping Beauty’s story, and the retelling requires some revisiting… But in a movie theater with my three young children over 50 years later, a man kissing a sleeping woman simply re-romanticizes this action, making it modern and legitimate today.

The kiss still appeared to be an acceptable and chaste course of action, rather than a serious crime.

I know, I know, it’s just a story.  A movie.  A retold fairy tale.  I still have that voice in my head, telling me to “calm down” or “chill out.”   I have tried to talk myself out of this feeling of unease, or the need to write this post and make myself look like  a crazy, overprotective, manic mom with nothing better to do that pick apart a classic romantic gesture, a harmless little kiss.

But.

Parents, this is where it begins.  In the movie theaters when our kids are innocent little boys and girls.  In the seemingly innocuous kiss between prince and princess.

We are all from the generation where we watched movies like Sleeping Beauty and Snow White, and it was all so romantic and sweet.

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But we know that women in this century want more respect than that.  Women want to show up in movies where we are not portrayed as helpless victims and fanciful, silly girls who only care about a prince on a white horse whisking her away.  And slowly, we seem to be gaining ground in our demand for better story lines, at least on the big screen.

(Not so true of Disney’s T.V. programs, as I have already wrote about here).

But there is more to ask for.

It should not be acceptable to walk out of a PG movie in 2014 and allow our children to believe that kissing an unconscious girl is just part of a fairy tale, and not a sex crime. This  action needs to be viewed as inappropriate content for children.  Prince Phillip would not be shown cupping her breast while she slept.  We wouldn’t have trouble seeing that as improper content… but an innocent kiss falls into that same category when the princesses is unconscious.  

We can all see how this dangerous storyline is playing itself out on high school and college campuses across the country, with life altering, devastating consequences.  It is important for us to recognize as parents of young boys and girls, that these subtle messages become part of a greater unconscious.  It matters.  It informs their development and understanding of what is normal and acceptable.  My own feelings of resistance in calling this kiss a sex crime speaks to the power of those subtle messages in our culture.

Those messages that blur the lines between romance and assault do not belong in a movie for kids.   It is our obligation to protect our sons and daughters from the devastating damage that can happen when we do not clearly delineate what is and what is not appropriate behavior.  And we need to start now.

It is never too early to begin having conversations about consent with children, and Disney just gave us all a beautiful opportunity to do that.

We left the theater with a lot to talk about… one of my favorite parts of seeing a movie as a family is the subsequent dissection and discussion.  My girls walked away from the film with a greater capacity for empathy and understanding.  They saw how a villan was created out of  the  agony of pain, heartbreak, betrayal.  They saw how a heart can be hardened by anger and vengeance.  They saw the devastation of revenge, and the triumph of  love and redemption.   I appreciate these ideas being visited more and more in family movies… the world is not black and white. There is a deeper compassion and mercy to be unearthed within a story of good and evil.

And then, we talked about the kiss.  It was a simple and easy discussion, relatively general, but it planted the seed.  One that will grow into further discussions and questions  in a natural way, preparing them for the complicated moments they will encounter in their future.

Understanding consent is more than one conversation.  It is a childhood full of moments where we take the time to point it out.  We have to be vigilant and willing to dissect a song, a movie, a kiss, a story, an idea… not allowing those small moments to slip unnoticed into their minds and become something that leaves them unprepared and unprotected for the experiences that lay ahead.

 

So go.  See Maleficent… be entertained and opened by her story.

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But please, protect our children… don’t forget the conversation after.

 

 

For more information on talking to kids about consent:

http://www.buzzfeed.com/summeranne/30-healthy-ways-to-teach-kids-about-consent

http://everydayfeminism.com/2014/03/examples-of-rape-culture/

http://time.com/40110/rape-culture-is-real/

 

 

Sound Support: 8 ways to Improve Life with Misophonia

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We have now been living with misophonia for almost two years.  Misophonia was a sleeping monster inside my little girl… awakened  during the summer of 2012.

 

Misophonia is condition of extreme sound sensitivity.  It is characterized by an immediate, acute, negative emotional reaction to certain sounds.  People with misophonia experience a fight or flight response to simple everyday sounds like tapping fingers, typing on a keyboard, crinkling wrappers, sounds in speech, eating noises such as chewing, swallowing, or crunching.  The fight or flight response creates panic and rage, and sufferers can become violent and emotionally explosive when they hear these triggers.

 

The easiest way to relate, would be to imagine being trapped in a room with someone who is scratching their nails down a chalkboard and will not stop.  Most people will have a powerful, negative reaction to this scenario… first a cringe, cover their ears… but if the noise persisted,  soon they would flee or get angry and demand that the sound stop.

My daughter feels this intense reaction to small, insignificant sounds.

 

Unfortunately, misophonia triggers can also be specifically focused on one person.  In my daughter, her emerging misophonia presented as an intense aversion to my voice.   In fact, emerging is not quite the right word… misophonia looks more like the sudden transformation from Bruce Banner to the Hulk.  Quick, violent, immediate, and terrifying.

I wrote about that crushing few months in Sound Desperation and Sound Hysteria.

If you have never heard of this condition, you are not alone.  No one seems to have heard of this condition.  Doctors and mental health professionals are unaware.  Which means that as parents and sufferers of misophonia, we are largely on our own, trying to cope with a disorder that looks like a giant temper tantrum.  Without being understood or respected as a true health crisis, misophonia can quickly tear a family apart, destroy relationships, and create a life of isolation and desperation.

Since we began dealing with misophonia, Lydia’s triggers have increased.  She now has powerful reactions to her sister as well, a heartbreaking reality I wrote about it in Sounds of Our Crisis, Living with Misophonia.

Her list of triggers are growing every month.
It has been bad.  Really, really bad.  I will admit here, that there have been weeks of time where my husband and I wondered if we would be able to raise our child.  I have googled  boarding schools in our area, feeling my heart may just disintegrate in my chest like a wet tissue.

 

Two years in, I am relieved to report that things have gotten so much better.
I finally feel like I have something constructive to say!  So, here is what we have learned, and how we are coping.  I want to share it, to help others who are in those really dark places right now.

It seems like every health article out there begins the same way… perhaps because even though we don’t want to hear it, the truth and healing lies in diet, sleep and exercise.

Bleck.  I know.

But essential.

Misophonia is easiest to relate to when you think about irritability.  Moodiness.   It is really hard to understand Lydia raging about the way I say my S’s, but I do understand what it feels like when I am too tired, too hungry, or too inactive.  Human beings are more likely to overreact, say cruel things, tantrum, or embarrass themselves if they are  sleep deprived, hungry, or have a lot of pent up, unreleased frustration.

 

So.

#1.  SLEEP

 

Lydia must have regular, good sleep.  We rarely allow her to have sleep-overs with friends or stay up late on weekends because being tired makes Lydia impossible to live with. We are very, very strict about her sleep schedule.  I am afraid as she gets older this will be harder for us to manage well, but for now, she doesn’t have much flexibility.

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#2. EXERCISE

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We find that she does so much better when she is really active.  We will always have her in a competitive sport that requires exhaustive exercise (like swim and soccer and track) because this makes her feel so much less irritated… and she sleeps better.

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#3. DIET

When she is hungry, watch out.  When we plan poorly and she gets too hungry, or if we get lazy about healthy snacks, Lydia has a much harder time with her misophonia.  It’s an almost guaranteed disaster if she gets into that low blood sugar zone.

 

#4.  HEAVY BLANKETS AND TIGHT HUGS

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Misophonia is worse with overstimulation.  When Lydia is feeling triggered, she will often come get a really tight hug from me.  The squeezing is helpful in reducing sensation and sensitivity, and calms the nerves.

We also bought Lydia a heavy blanket… these are straight from heaven.   We bought ours here…http://www.saltoftheearthweightedgear.com

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It is a blanket filled with beads or rock.  They come in various weights and sizes.  Lydia sleeps with hers every night, and the heaviness does the same thing as a tight hug.  It calms her overstimulated nerves and helps reduce sensation.  When she is in a meltdown mode, we will send her to her room to calm down, often under her blanket.

#5.   OVERSTIMULATION

 

We got really focused on the sounds Lydia hates, but the trick is to reduce stimulation while masking the sounds she is triggered by.  Bright lights and lots of noise chaos can make the sensitivity worse. We found these apps that have all kinds of noises… rain, static, chimes, wind…

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We turn down the lights, turn off the t.v. and then Lydia can chose one of these sounds to help distract her from her triggers.  We prefer to have this playing because we want Lydia to be able to manage herself with the most mild forms of intervention possible.  But, many times she still has to eat in a separate room, or use headphones to more thoroughly block sound.  It’s a slow process.  Even our four year old will acknowledge in gratitude the days that Lydia joins us for dinner.

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#6.  NEUROFEEDBACK THERAPY

 

For about a year and a half, Lydia saw a neurofeedback specialist, Rae Tattenbaum.  Here is the link to her practice:  http://www.inner-act.com

We were also featured on a local show, Better Connecticut.

Kara’s Cure: Inner Act and Neurofeedback

 

When the misophonia was nightmarish, Lydia would go at least 2 times a week.  We were able to cut down to once a week, and we did that for a long time.  This treatment did help her enormously, and we saw a huge improvement in her coping ability.  In the beginning,  seeing Rae was the only thing that made me feel like I could raise my daughter, the only thing that made our situation liveable. Once we had things more under control, we began to realize that the neurofeedback was not a long term solution for us.  When we stopped the treatments, she would slowly slip back into misophonia meltdown mode.  Eventually, we felt stable enough to look for alternative answers.

 

#7.   HEARING AIDS

In February, we found a professional who had actually heard of misophonia!  We took Lydia to see  Melanie Herzfeld, an audiologist  at the Hearing and Tinnitus Center in Long Island, NY.

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She recommended a set of hearing aids for Lydia, which emit a white or pink noise.  They help mask all of the small sounds that make Lydia go nuts.  She does not have to wear them all of the time, just when she is feeling triggered.

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The hearing aids have saved us.   I was very nervous about getting them, because they are so expensive and also not covered by our  insurance… but worth every single penny.  We bought her hearing aids one day before we drove from our home in Connecticut to Washington DC for spring break.  It took us eight hours. Normally, this would have been an epic nightmare.   We have been on way shorter trips that have been emotionally scarring for all of us, car rides where I contemplated hitchhiking home.

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She wore her hearing aids and watched movies with her sisters and I talked to my husband in the front seat… It was a miracle, truly.  I had been unable to speak while in a car with Lydia for the last two years.  I was so afraid to believe that it was not some kind of random fluke… but we drove all the way home without trouble, and have been doing well in the car ever since!

 

#8.  PAIN MANAGEMENT

The audiologist also strongly recommended cognitive behavioral therapy with an emphasis in pain management.  She stressed the importance of finding someone who will not try immersion therapy techniques (making Lydia listen to the sounds she hates).  Pain management would help Lydia learn coping techniques to redirect and refocus her attention.

 

We have looked around, but have not been actively pursuing this therapy for Lydia right now.  The techniques in #1-7 have helped get us to such a safe place, we don’t feel it’s necessary right now.  But I also know that things change.  Lydia is going to change.  We will grow and adjust with her, and it’s good to know where we will look next if we need more help.

There are websites and support groups popping up on the internet now that can also be sought out.  Personally, I avoid them, although I am sure they are very helpful for others.I can not bear the stories told in those groups.  Most of them just fill me with heaviness and desolation, wondering if I will raise my daughter and never see her again when she is old enough to leave.  Will she be able to call me?  Visit?  Will she know her sisters and be a part of our lives?  Will she be able to have deep, meaningful relationships?  Love, without feeling tortured?

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I have to believe so.  And while I ache for those that are in that pain now, I am not prepared to be a part of the support group.  I can’t.  Because today, things are ok.   I can only look forward and believe that my daughter will be ok, and I will have the privilege of always being in her life.    But I offer all my love and support in sharing our story here.

And I will contact anyone who needs to hear a person say, “I understand.”

We understand.

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I Went To An Art Party and Ended Up Getting Baptized. Again.

 

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There is a certain feeling you get when you are around a person that is self-possessed and fully expressed.  A person who is not arrogant or tightened inside, but open and fluid.  They have a different energy about them, a softened look behind their eyes.  They  lack  self-conscious defensiveness that others carry when  afraid to be fully seen, fully themselves.

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Photo Credit: Gardner Edmunds

 

I adore these people.

 

I think most of us do… they are the ones that make you feel instantly more at ease, safe in their presence to unwind a few notches and take a breath.  They attract people like a light bulb surrounded by moths, clamoring to be near.  Sometimes, they are hard to find.   Most of us are wound up and covered in armor, desperate to be seen but not seen.  We are busy trying to impress, trying to hide, trying to find the perfect balance of control that will make us not appear to be total asshats.

 

Last week, I was lucky enough to attend a party called  Creative Cocktail Hour with a lovely friend, a local artist.  Rick and I both adore Stefanie and her husband Carl,  because they both have this light presence, and when they are together it is even more inspiring to witness.

 

We went to Creative Cocktail Hour with a friend of hers… both of them attend these monthly parties faithfully… It is a  gathering of local artists and art-lovers at Real Art Ways, a space designed to showcase and support local art and the art community in Hartford.

 

I was scared.

 

My inner introvert shrinks like cojones in an ice bath at the thought of meeting and chit-chatting and mingling at a large party of “cool” people.  People who probably know how to talk about art.  I am not sure that unused Elementary Education degree I earned was going to come to my rescue when I needed to find an intelligent contribution to the small talk.  Unless somebody wants to talk about making homemade playdough sculptures.

 

That scared, uptight, insecure voice inside me was worried about being seen as a scared, insecure, uptight gal in a sea of self-expression.

And that is exactly what happened… at first.

 

We were greeted at the door by a huge, barrel chested  man named Tito, whom Stefanie and Greg hugged first.  When I extended my hand in introduction, he swallowed me in a hug, declaring,   “No one shakes hands here!” in a deep bellow.  A tall thin man rode up on a bicycle with a spatula taped to the back end of his helmet and dismounted.  He also hugged Tito, and then we all made our way into the building, passing an older couple in their late 60’s wearing hats made of disposable picnicware.

 

There was no visible commonality in this gathering.  The variety of ages, clothing style, hair style,  gender expression, sexual expression …was astonishing.  It appeared that every kind of person from all walks of life had come out to hug and chat and dance.  There was one golden thread of detectable similarity there, and after softening into the night I began to see it.  I wanted to belong there too.

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So I was baptized that night.

 

It was my second time being baptized, in fact.

 

The first was a religious affair… one of the most important moments of my life as an LDS child remains a gauzy, soupy memory I can’t quite access.  But this I know:  I was eight, I wore a white dress and people hugged me and shook my hand and told me how proud they were of me for making the only right decision there was to make… to be baptized by immersion for the remission of my sins.  So I could belong.  When I came up out of those waters, I emerged fully committed to do my best to become the person God wanted.

 

At Real Art Ways, I was baptized by immersion again.

 

Immersion in a scene filled with people who were all unapologetically themselves.

 

To be exposed and immersed in this unadulterated authenticity was not for the remission of my sins, but a remission of my armor.  The crowd pulsed with this free energy, the acceptance of people as they are.  Simple.  In a gathering of people all devoted to becoming, every day, more freely self expressed, the beauty of humanity is a palpable force.  It existed in the art on the walls, in the music the brass band was gifting to us, in the  air that surrounded us.  It entered me with each breath, and then right through the pores of my skin.   I felt it move to open the hardest places inside me… this collective energy has one message:

 

You are supposed to Be exactly what you are.

The immersion will not be an experience I will soon forget.  It was a moment of experiencing the possibility of being free from sin.  And, I am coming to more fully understand what sin really is.  Sin is the armor of self-protection we wear… to make ourselves appear formidable and fierce and brave.  We put on this armor so that we can go out and be seen, without exposing our most tender places, without being vulnerable to the pain of rejection or loss.

 

We cover ourselves up and hide in the open so we do not have to hear the message we dread:

 

Be ashamed.  You are not enough.

 

Stefanie, the friend who brought me,  is less covered by this armor, and by being more freely expressed, more authentically her, I sense the safety in being me.  I realize, where they gather, these people who are figuring out how to move through it and lay down the armor –  love is less diluted.  It is more easily accessed and felt… it is the golden thread that binds us.    We ALL belong already, we just have to take off the protection and express who we are… and others will see that golden thread too.

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Photo provided by Stefanie Marco, KiNDSPIN DESIGN

So go out and find those people, the ones that carry themselves with that spark of authentic presence.  It is not hard to recognize the lightness they possess, their loving energy is more free to flow.  Immerse yourself in their authentic lightness, in the generosity of spirit that surrounds them… in that spirit, there is no fear.  Only love.

 

When I emerged from this second baptism,  I came away not committed to becoming… that commitment is the sin.  The armor.

 

I emerged more willing to Be.

 

Unapologetically, just as

 

I am.

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Photo Credit: Gardner Edmunds