Thursday, June 27, 2013

Roots

We're limping over the finish line - school finally ends today.  Greta is no longer in elementary school - this fall she heads to middle school.  Finn is reading chapter books and eager to start second grade. 

They are growing up.

I usually feel ambivalent about the last day of school - carrying a nervous pit in my stomach about how on earth I'm going to keep up my hectic work schedule with them home full time.

Not this year.

I'm tired.  I have so many exciting things happening with my non-profit, with my jewelry businesses, with my Arbonne business.  But I'm stretched too thin, and everything is suffering. 

The things I usually do to tend to the soil beneath my own feet - yoga, exercise, meetings, cancer group - have taken a back seat to my schedule.  We all know if you don't care for the roots of a plant it starts to wilt, and my flower is wilting.

I can't imagine giving up any of the things I'm doing - I love them all, and they all fulfill important needs for me financially and spiritually.  But I can't keep this up.

I have decided to put my Etsy shop - Shining Stones - in hiatus for the summer.  If you are still waiting on an order, no worries, I'll get it to you.  But once I have cleared my decks there I'm putting it in vacation mode for two months.  I have to, and I even kind of want to.

I'll keep Two Little Birds Studio open, with the caveat that it may take a couple of weeks to complete any orders. 

I need a break.

Really exciting things are happening for Shining Strong - we're partnering with a world-class addiction rehabilitation center here in the Northesast.  Gosnold on Cape Cod, where I got sober as did two of my very best friends and countless others that mean so much to me. If you go to their website (follow the link) and scroll down you'll see Shining Strong is listed as a partner.   We have big ideas, big plans, to bring the stigma of addiction out into the light and help people know they aren't alone.

I want to focus on that.

My Arbonne business is growing by leaps and bounds - I'm building a team of incredible women who are changing their lives by building their own Arbonne businesses, and it's exciting. I want to be there to help them, too.

I need to be able to exercise, go to yoga, go to recovery and cancer support group meetings.  Those things fill my soul, make it possible for me to make it through the tougher times.

And things haven't been all that easy this month.  I miss my Dad so very much.  June 11th was the anniversary of his death, two years now, and as these exciting things happen I find myself thinking "oh, I can't wait to tell Dad!" only to have the heart stopping realization that he isn't here to tell.  I still have a lot of processing to do.

My anxiety is back.  Not constantly, but enough that it's sapping my energy.  I know it is because I'm not tending to my roots. 

I want to throw myself into this summer without feeling pulled in ten different directions - physically here but mentally absent.  My kids deserve that.  I deserve that.

We have trips planned for most of July - visits to see family, a trip to the Florida Keys, and then I'm going to Chicago for the blogging conference BlogHer.   I want to be present for these things.  I am beginning to understand the affliction of workaholism.   I know my scales are not balanced. 

I will take the summer to regroup, re-prioritize.  I have to.  

It's hard, though, when all the dreams you've had start to gain momentum at the same time.  I don't mean "poor me" hard, I just wish I could space it out more, so I didn't have to pick and choose.

It's only been a year since my last major surgery - the neck dissection that removed 23 lymph nodes and hopefully the last of my cancer.  

I think I'm overdosing on feeling good.  I'm SUCH an addict.  If a little is good, more is better, right?

Wrong.

Back to basics for me: family, self-care, longer stretches of time (heck, ANY stretches of time) where nothing is planned.  Lazy summer days burying my toes in the sand with nothing on my mind but what to read next.

I hope.

I hope I can do this.  If I struggle with a more balanced pace, I know I will have to do some serious re-evaluating of whether I'm running towards, or running from

I'm calling myself out, here, for those days when I'd rather manically check emails than go to the beach with my kids.  For the times I drag my laptop with me on vacation and spend more than a few minutes checking in.  For when I am in the middle of a perfectly good summer day and my mind is anywhere but in the present moment.

I want to be in the present moment.  I am concerned I may have forgotten how.

We will do The Bubble Hour podcast every other week during the summer, so my co-hosts and I can have some breathing room.  We don't want the quality of the shows to suffer simply because we feel the world will stop revolving if we aren't live on the air every week.  Of course it won't. In between live shows we will air re-broadcasts of some of our most popular or helpful shows.

I hope you are enjoying a peaceful summer - even if you work full time, I hope you're able to find that breathing space, and time to tend to your roots. 

-Ellie


Monday, June 17, 2013

The Most Important Post I've Ever Written About Addiction and Recovery

I went to a screening of "The Anonymous People" movie on Saturday.  I met up with nine others, including my best friend and a co-host of The Bubble Hour, Amanda:


Amanda, Ellie, Holly, Jaclyn, Kylee
Here's where I could insert the usual rhetoric of "do they look like alcoholics or drug addicts to you?"

But I'm not.

Because The Anonymous People is at the front end of a movement - a Recovery Advocacy movement - and we're changing the vernacular, the way we talk about addiction.

That is a picture of people in Long Term Recovery.

The shining, smiling people in the photo above all have a chronic, progressive disease that if left untreated will kill us.

"Addiction is a disease without a cure, but WITH A SOLUTION."  (William Cope Moyers)

When someone remarks on the fact that I'm not drinking and I say I'm an alcoholic, even if I quickly add "in recovery" right after, I already know that the word 'alcoholic' has connoted something for them.  We all have a picture of what an alcoholic looks like in our mind's eye.  If I say, however, "I don't drink because I'm in recovery", there is a smile and usually a "good for you!".

Everyone likes a good redemption story, and being in remission from addiction is right up there with being in remission from cancer or other chronic diseases.

Did you notice the word "remission"?  That's because I'll never be cured.  I am a Double Winner - someone with both cancer and alcoholism - and I know that I'll never be fully "cured" of either.  But I also know my chances of staying in remission go up the longer BOTH my diseases are inactive.

Do you have a picture in your mind's eye about what recovery looks like?  Most people don't, because recovery has long been kept in the shadows.  Because of the stigma, most addicts and alcoholics do not speak openly about their recovery.  The media is full of addiction horror stories, but there are very few recovery stories, and we're trying to change that.

Addiction is a disease.  It has been recognized as a disease by the medical community for decades.


While the choice to take a drink or use a drug is voluntary, what happens to my brain vs. a "normal" person's brain is completely different.  If a comparison to cancer or diabetes or other chronic diseases makes you uncomfortable, think of it like an allergy.  My body reacts differently to alcohol, triggering compulsive behaviors (like wanting more) despite any negative consequences that may occur as a result of drinking.

So, people may say, "Just don't drink!!  If you were allergic to peanuts, you'd stay away from peanuts!"

Here is the root of the stigma, I think, because the symptoms of the disease of alcoholism are behavioral.  When someone is stuck in the cycle of addiction, they aren't trying to ruin their lives, or drink more than a normal person.  They are trying to just have one or two, but since their bodies are hard-wired to respond differently, it just isn't possible.  We call it "being born without an 'off' switch".  It can take decades for the disease to take root, so evidence of addiction isn't always readily apparent.

By the time someone realizes there is a problem, they are usually caught in the emotional addiction (if not the physical one) and can't get out on their own.  Their thinking is the problem - it's a brain disease - whether it's denial or the belief that if they try hard enough they can cut back or stop altogether.

An addict can no more think their way out of addiction than a cancer patient can think their way out of cancer.

Would you tell a cancer patient to 'stop' having cancer?  Or a diabetic to start controlling their insulin on their own? 

It sounds like I'm being facetious, but I'm not. 

The "Just Say No" campaign in the eighties - arguably well intentioned- exacerbated the stigma of addiction in very harmful ways.  While the campaign itself did little to curb addiction and addiction related problems in society and the economy, it cemented in the public's eye that it's possible to simply say NO to addiction.   It furthered the belief that addiction is a moral failing or lack of willpower.

Willpower has absolutely nothing to do with addiction. If it did, addiction related issues wouldn't cost the US economy over $360 BILLION per year.  If "just saying no" were enough, those of us suffering at the hands of addiction would have said no a long time ago.

What we need is vast policy change, healthcare reform, enough treatment beds and more reimbursement for treating addiction.  The system is reluctant to "dump" money into rehabilitation, with the mistaken belief that addicts and alcoholics don't get better, or at least most of them don't.  We should be treating the addiction problem in the US like any other health crisis, like cancer and obesity.  But we aren't.  WHY?

Here are some startling facts:
  • 63% of Americans are impacted by addiction
  • 67% of Americans observe a stigma towards addiction (this includes the addict themselves, who are trying desperately to 'cure' themselves of the problem, thinking they are weak or morally corrupt).
  • 74% of addicts/alcoholics are ashamed to talk about addiction in their family
  • 80% of people in prison are there due to addiction related issues
  • Addiction (alcohol and illegal drugs) cost the US economy $366 BILLION in 2004. Add in prescription drug abuse which has reached EPIDEMIC proportions and that number goes WAY up.
  • Over 20 million people struggle with addiction. 
  • THERE ARE OVER 23 MILLION PEOPLE IN LONG TERM RECOVERY IN AMERICA ALONE
That last bullet point is the one I want to focus on. Changing the public's perception of addiction by TALKING ABOUT RECOVERY.  Because, everyone, RECOVERY WORKS.  There are more people in recovery from addiction than there are suffering from it.

Here's the rub, though. People don't recover on their own.  Every single recovery program focuses on community - on finding other addicts and alcoholics who understand where you are and can help you navigate life without alcohol or drugs. 

It doesn't matter what program of recovery you follow. Recovery advocacy is for EVERYONE.

You don't have to talk about HOW you recovery, just THAT you recover.

For those of us in programs that have anonymity as a tradition and who are confused about breaking this tradition, this point is KEY.  How you stay sober isn't relevant.  You do not have to be a mouthpiece for an individual program of recovery.  You can talk about recovery without ever mentioning how you do it.  When someone who is suffering asks you how you stay sober (and if you talk about recovery they will ask, I guarantee it), then you are free to share - in the sacredness of a one-on-one (or group) setting - how you do it.

But until the public understands that RECOVERY HAPPENS, people are going to stay stuck in addiction.  People are going to misunderstand what addiction means.  People aren't going to know it is quite literally on every street in America.  Every street has someone stuck in the darkness and isolation of addiction, and every street has someone thriving in recovery.  We have enough coverage of the destruction of addiction.  We sensationalize the stories of celebrities crashing cars, going in and out of rehab.  We condemn the havoc alcoholism and addiction bring to society.

We are sensationalizing the wrong thing. Let's sensationalize recovery.

How? How do we do this?  Not everyone needs to stand on a hilltop and tell the world they are in recovery.  For the same reason lots of people choose not to talk openly about their cancer, diabetes or other chronic illness, because it's personal.  But usually a cancer or diabetes sufferer isn't ashamed (I know there are cases where shame comes into play in these diseases, too).  An addict is almost always ashamed until - if they are lucky - they find their way into a program of recovery and discover they are NOT ALONE and there IS hope.

What we need are healthcare and policy changes that support an addict or alcoholic wanting help.  If you decide you want help - even if you're forced to get help - it's astonishingly hard to get a bed in treatment.  LONG TERM treatment is needed, whether it's inpatient or out, to start on the path to recovery.  Even if you DO find a treatment program, it's usually prohibitively expensive. 

To sum up: today in our society a person stuck in the cycle of addiction has to work their way past the stigma and shame, ask for help (and the statistic above shows that most people don't even want to tell their family) and then FIND that help.  And then pay for it.

The system is BROKEN.

If we channeled money into prevention and treatment that $360 billion would go DOWN.  Parents, this involves you, too. Prescription drug abuse is everywhere. Literally. Kids of every economic and ethnic background are trying these drugs, and for those that have the disease of addiction it is killing them.  They don't just try an Oxy at a "Pharma-Party", they end up mere WEEKS later addicted to heroin.  It's happening in YOUR community. It is not a reflection on your parenting.

It is an epidemic.

If you want to become involved in Recovery Advocacy, there are many places to go.  Google recovery organizations in your state.  Go to Faces and Voices of Recovery and see what they are doing there.  Check out the trailer below for The Anonymous People

There are other ways, too.  If you have a family member who is struggling, open your heart and mind and realize they have a disease.  This doesn't excuse behavior.  Consequences of addiction needs to be acknowledge and amends to society and loved ones paid.  I look at it this way:

Addiction is not my fault, but recovery is my responsibility.

Unless the public's perception of alcoholism and addiction changes, and more resources are dedicated to helping addicts as patients who have a disease, we will stay rooted in fear, stigma and reacting to this problem instead of being proactive.

Remember "Silence = Death"?  The gay community recognized that the stigma surrounding their community was going to kill them unless they changed the public's perception of HIV. They came out of the shadows, stared down that stigma, and changed how the public (and policy makers) view HIV.

Addicts and alcoholics are in the same position.  We DIE of this disease.. the one so may of us can't talk about.  It will KILL us.

If you are an alcoholic in recovery, try changing the way you talk openly about your disease.  You are a Person In Recovery.  Even if you only have one day.  Welcome.  You are a miracle.  Be proud.

Please watch this trailer- it's only 3 minutes.  If you are in a position to do so - and I hope in the future many, many more of us will be in that position, SHOUT to everyone you know to watch this. If you have a loved one or friend who struggles or who is in recovery, this effects you, too.  If you pay taxes this effects you. 

Addiction impacts EVERYONE.

Get informed. Get active.  Get well.




Friday, June 14, 2013

How To Do Anything.

My daughter is learning to write. Not just I-can-spell-things-correctly, but really write.

Her awesome 4th grade teacher has them writing all the time. About anything and everything. He knows that the more you do something, the more you'll drop self-doubt and fear.

She padded up to me a few nights about with an essay she had written.  I knew she was proud of it, otherwise she would never have shown me, but she downplayed it when she asked me to read it, saying, "this isn't very good, I don't think."

On her face eagerness and trepidation fought it out.

I've learned not to be overly enthusiastic in my responses to practically-no-win situations like these. If I chirp, "It's amazing! Perfect! There's nothing not to like about this!"  her chin trembles and she says - every time - "you don't like it."

If my response is too moderate - not enough chirp - the trembling chin appears and she says "you don't like it."

So I read it with my own share of trepidation, not about whether or not it's good, but how to help this kid believe in herself, to understand that it's all about the effort, not the outcome.

I gave her a smile and said, "I really like it. Especially the beginning. It really made me want to read more." 

She beamed.  "That's called an engaging beginning. It's important because it's the first thing someone reads so you don't want it to be boring."

"Sometimes I write my beginnings at the end, after I've finished the rest of it," I said.  "Or I'll just write a boring beginning and make it more interesting after I've finished it."

"You can re-write your beginnings?" she asked, her eyes wide. "That's cool!"

~~~~~

I've re-written so many of my beginnings. In recovery, people often say "you get to write your own endings", and I do love that concept, but to me it's more like re-writing your beginning.  Because we don't have that much control over our endings, although we love to feel like we do.  It's the beginnings that we have control over.

Putting a foot forward onto a new path is terrifying. We squint our eyes, desperately trying to see over the horizon.  It's much easier to venture onto a brand new path if we know we'll be successful.  Or safe.  If we are certain there will be laughter and joy and peace along the way.  We believe there will be hardships - bandits hiding in the bushes, mountains to climb, potholes to fall in. It's easy to believe in the obstacles. Where we struggle is with the unavoidable uncertainty that we don't know where it will lead.  All we really know is what the path looks like right under our feet. 

Here's the truth: there will be both. There will be bandits, and potholes and seemingly insurmountable obstacles. Maybe some of these obstacles won't be surmountable, and then - gulp - you'll have to start on yet another new path to get where it is you're heading.  There will be smooth, pebbled paths, beautiful vistas and rest stops, too.  That's life.

Sobriety is like this. So is fighting cancer. Or losing weight. So is starting a new business venture or sending a kid off to the first day of school. Or college. Or anywhere.  We want to run ahead, smoothing out the path, shooing away bandits and hacking easy paths around mountains.

We want someone to guarantee our own success, too. No matter how old we are. We want our own path-smoother.

We don't need a path-smoother, though.  We need a walking buddy, or a stranger on the path who hands us water or offers a place to rest.  Those people can be found in the most unexpected of places, too, if we're looking.

Cheerleaders are great to have - all "sis-boom-bah!" and "you can do it!", but we also need a few navigators, people who have walked the path before, or who aren't afraid to tell us we've lost our way.

I've been lost many times. I've doubted myself more than I haven't.  It was in the stumbling that I figured out that I wasn't on the road meant for me.

More than a few people have said to me when I am talking to them about losing weight, or getting sober, or starting a new venture or fighting cancer, 'that's easy for you to say, you did it already."

But I haven't.  I'm just doing.  To lose weight I had to be overweight. To be sober I had to be drunk. To start a business I had to have nothing. To beat cancer I had to have cancer.  I'll gain weight, my sobriety will wobble (or fall), my businesses fail, my cancer will lie in wait, or go away.  I don't control any of that. I haven't written the endings to any of these things, yet.  Just lots and lots of beginnings.

Wherever you are in life, whatever you are facing - sobriety? weight loss? a move? a divorce? starting (or ending) a business venture? - the path is long and twisty, and your choices are few: lie down and give up or take the first step.

That first step? That's you, writing your own beginning.

Sunday, June 9, 2013

Pinwheel

My Dad had a trailer.

Not just any trailer. The bottom half of an old Jeep.

I can't remember my childhood without the presence of this trailer, which he lovingly (and constantly) restored.  He painted it a cheery red, built custom wooden sides and a removable back. 

Growing up, it feels like just about every fall and spring weekend I'd be bouncing around in the back of the trailer as we bumped through the land surrounding our house doing yard work, a wild grin on my face.  Riding in the red trailer was a treat.

It came with us camping, fishing, canoeing.  It was packed with kids or bikes or beach gear, pulled behind a never-ending series of Jeeps. 

Two years ago  my Dad died suddenly from an infection.  He had had his spleen removed seven years earlier because of cancer, but had been in remission and otherwise healthy since the surgery.  On June 11, 2011 he woke up feverish, and was in the hospital just a couple of hours later fighting a losing battle with sepsis, because he no longer had his spleen.  It all happened so fast.  One night he was healthy, happy and very much alive.  By the end of the next day he was gone.

I'm still struggling to wrap my head around his physical absence in our lives.  I think I always will.

His spirit is everywhere, though. 

Very early this morning I cradled a cup of steaming coffee in my hands as I watched my husband putter in our driveway with the red trailer; it now resides with us. I don't say it's ours, because it doesn't feel like ours. It feels like we're simply the next caretakers, my husband pouring as many hours as my Dad did into it, polishing the tires, patching up rust, painting faded spots. 


We were heading to the PMC Kids Ride for Cancer.  Greta and Finn sponsored a team that raised over $1,000 for Dana Farber's Jimmy Fund.  The sun was just peeking over the treetops, sending sparkling rays through the dissipating early morning mist. 

I could practically see my Dad standing there, baseball cap planted firmly on his head, fanny pack full of all the gear we'd need for the ride strapped around his waist (first aid kit, map, band-aids, bug spray, mole skin, sunscreen) and nodding with approval as Steve strapped down the bikes and the kids piled in the car.

We arrived at the beautiful park where the ride was held, jostled into helmets, filled water bottles, and secured our riding tags.

The kids were bubbly, excited, chattering a mile a minute.  The day was spectacular - after a couple days of torrential downpours and steaming hot weather, the day was clear, warm and sunny.  Everyone was smiling, happy to be outside on a gorgeous day raising money and awareness for such a worthy cause.


Finn looked heavenward, sporting his Dartmouth tee shirt (my Dad's - and my - Alma Mater) and mohawk helmet with pride:



We named their team "Team Going Strong" in memory of my father (my maiden name is Strong) and in honor of my remission.   A team shot pre-race:

Team Going Strong

They lined up in their designated groups - the boys riding the one mile "Crusader" loop, and the girls riding the 4 mile "Challenger" loop:



One by one, they pushed off, each wearing a huge grin. 

Cancer makes families feel so powerless, but today?  Today was all about hope.  And empowerment.  These kids knew they were making a difference, and it showed in their faces.

Afterward they played games for little plastic prizes, ate free ice cream, bounced in the jumpy house - a celebration full of chocolatey smiles, painted faces and laughter.

A good day.  A great day.

As the kids played, I quietly slipped away to the pinwheel garden.  Riders could make pinwheels honoring people - surviving and not - who had fought cancer.  The bright pedals spun in the sunshine. 


With a silent prayer, I added my Dad's pinwheel to the garden.   The kids called him PopPop, after the funny sound he made with his mouth that made them laugh:



There was also a pedal for me, currently - and oh so gratefully - in remission from cancer.

My Dad gave tirelessly to all the communities he served: charities, schools, towns and churches.  He dedicated much of his time to helping make this world a better place for all people, especially those less fortunate than he was.

This is his strongest legacy to us all - this message of hope and giving of ourselves.  Today, his spirit lives on in my family - my children - as we celebrated life and honored those who have come before.

I miss you, Dad.  Every day. You are so very loved.


Monday, June 3, 2013

Hope for Calle - We Will Never, Ever Give Up

Let me  introduce you to Calle.

Caroline (Calle as she is known to her friends) was very excited to start kindergarten, but she began the school year by coming home very tired each day, but then most of her classmates came home the same way. She started exhibiting some varied symptoms - squinting to see, slurring a bit, falling more often than usual and having drastic mood swings. 

Her mom took her to a few doctors who all agreed that these symptoms were simply due to the fatigue from her new kindergarten routine. One afternoon in November, Calle was in her dancing class and began to have trouble standing up. Her parents rushed her into Boston Children's Hospital where they immediately ran some tests including an MRI.

In the wee hours of the morning, Calle's parents were brought into a room where they found several doctors waiting to speak with them. They were completely unprepared for what they heard next. 

The MRI clearly showed the cause of Calle's problems. Calle was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) which is an inoperable malignant brain tumor located at the brain stem. Calle's dad asked the oncologist how bad this diagnosis was and the answer he received was "the worst". DIPG is a disease that affects children usually between the ages of 5 and 9. The life expectancy is less than 1 year and the survival rate is 2%. Calle's prognosis is quite dire, but thousands of people (from so many places!) have been continuously praying for a miracle.

This Sunday, June 9th, is the PMC South Shore Kids Ride for Cancer.

Many of you are familiar with the Pan Mass Challenge, where teams ride bikes across Massachusetts to raise funds and awareness to fight cancer. 

The PMC South Shore Kids Ride is a way kids can participate in raising awareness and funds, too - except they don't ride across the state to do it!  :)   The ride is in Hingham, MA, at the Wompatuck State park.  There are several loops kids can choose to ride, depending on their age and ability.

We have put together a team for Calle - called, of course, Team Calle.  If you are local and have a kid between the ages of 3-15 you can sign up to ride for Calle.  Her Aunt Sharon is Team Captain, and her brother Connor is riding.  We are putting this team together without much time - because of extenuating circumstances we were only able to form the team on Friday.  PLEASE - if you're local - sign your child up to ride for Team Calle.  Registration is only $25.  The ride starts at 9am, but riders need to be there to register by 8:15am (keep reading to see the link on where to register).

Connor is riding the "Challenger" loop (4 miles), but when you register you will see other options for your child to ride (easier and harder - the only loop that allows training wheels is the "Toddler" loop).

If you can't ride but want to donate - all funds go to Dana Farber's Jimmy Fund - there is a page on this site just for Team Calle, and you will see a place to click to donate or click on "join this team" to sign your child on to ride for Calle.   To view the link to Calle's page, click HERE.

Most people are touched by cancer directly or indirectly at some point in their lives.  Kids, especially, can be left feeling powerless in the face of this disease. 

But this day?  This day is all about how they CAN help, how they CAN make a big difference.  Please, please register your child to ride if you're local, and donate if you're not. 
 


You can also register to volunteer (they are desperate for Route Guides) by clicking on this link HERE.

Here is a video made for Calle - you can also read more about her story at the website Hope for Caroline.





We will never, ever give up.