Swimmingly Disruptive

Heat. Water. Poverty. Children. Bureaucracy. Politics. Convening like a perfect storm in the summer of 2013. A community pool was empty. In the heart of the inner city of Providence. More than empty, it was riddled with damage. Rusted and old and hot, the sun reflecting off its chipped and peeling white paint. A pool shouldn’t be hot. It should be an oasis. This one had a history of being more than an oasis. It was a lifesaver. A veritable lifesaver to children who had nowhere to go in the heat of the summer. Adults remembered learning the lifelong, lifesaving, skill of swimming. For others it was a diving board out to a pretty cool life of success.

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Last summer, in the throes of heat and humidity, the absurdity of the situation steamed to a flashpoint. Open the pool. Fix the pool. When would it be done?  A poor neighborhood with small children who wanted to swim in the heat of the summer waited. And then the answer came – it would not be opened. It would be destroyed by a city administration hellbent to make a “cement pond” (to paraphrase Ellie Mae Clampett) out of the whole thing.  Maybe make a water “park”, with little fountains spraying up out of concrete. Or, as one radio talk show host said – let’s watch the kids get their crotches spritzed instead of learning how to swim.

It seemed like an outrageous injustice that would bring so such negative press that surely the administration would see the error of their ways and reverse themselves – maybe even throw a pool party to prove their mea culpas – and ‘what were we thinkings’.  But alas, the wingtips of a politician, and maybe more than one, who all should have known better started to grind into the sand. The more the people asked ‘why’, the louder the silence from the brick office space became. A grinding, seething silence that grew deeper each day. The incredulity of it all was shocking – almost to a one.

Figuring out the ‘why’ is usually what happens next.  But there was no time – there was no time.  Cement trucks were hovering in the dark people thought.  They might have been.

What happened next happened without plan, yet it was exquisitely executed.  It did not involve parading young sweating children out to beg for their pool.  The tactic was a classic disruptive model for change.  For those visual learners, here is a graphic to illustrate the paradigm.  (Credit here to Ted Santos, CEO of Turnaround Investment Partners).  What happened could have been planned out but it wasn’t. It happened by instinct, and was fueled by expediency – and the injustice of it all.leadership_disruptive_model_ts

People began to talk – each coming from their own perspectives and interests. There were advocates for the black community, one coming with a historical perspective who began to organize under the banner of Swim Empowerment.  He even put his own money towards a comprehensive study of why many African-American children and adults do not know how to swim as compared to their white neighbors. He held a community meeting. More people came and talked. The director of the department of health attended and shook his head. Local legislators came. Swim professionals from the “Y” and coaches got involved.  All establishing the bottom of an effective disruptive change pyramid – people with integrity, responsibility and accountability.

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Social media began to flicker as social media does. The conversations rose to a din. The din rose to outrage. People felt passionate and didn’t hesitate to say it.  A “Save the Pool” page on Facebook was born and hashtags developed.  A solid core of people were “in” – they were a committed core, giving this life. The next tier – commitment.

The engagement of a local talk show host quickly won an ally to the cause. Daily he raged on and on, and was joined by others – demanding the official who was ultimately responsible return his calls. No return calls. Silence. More talk show chatter. Support came as a gushing splash, spurred on by the silence from the hot brick building downtown. The community had taken its stand. (see tier 3 of our pyramid).

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Compromises began to be discussed.  “How about filling in part of the pool so it wasn’t deep enough to dive in?” No, the group said. You can’t learn how to swim in a wading pool. “No money to fix the pool.”  Legislators and contractors and community leaders rose up and said – we’ll fix it for free.  “We need to study this whole thing.” “And, oh, by the way, we’re going to fill in the other pools in the city.” By now it was clear the short summer season was passing by. Don’t touch the other pools, the group said, not to everyone’s agreement – but if you don’t touch them, we’ll agree to a [dreaded] commission to “study this”. The goal was clear – the only purpose of the commission was to get the pool open for 2014. We will “study” how we will do this, but we WILL do it. A declaration was made.

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Early in the process – the action step – began. The pool would reopen. Not to be fooled again – and recognizing the devilish details, questions were asked – when, where, how, who. Pressure. More pressure.  July 1st. The pool will be repaired and it will open on July 1st.

Construction began this June, and it was watched diligently, for any possible delays. In the last week of June, the repairs were completed. The water flowed into the pool. And it waits now – warming up – for its debut as this community’s oasis.

It will open tomorrow with a press conference. This year, the talk of making more water parks or cementing in of deep ends is gone – the whole crazy no-pools issue has had a complete breakdown.  There is talk of swim lessons. Around the city. And BBQs for families around the pool. There have been no apologies or explanations – still silence. There will be a lot of people to thank, but for fear of omitting, perhaps it’s best to say this: the story is about the kids smiling, happy to be swimming in the pool, not about the politicos who will want to claim victory or credit in a big splash. Not about any one person really.

This spontaneous, informal, beautifully executed disruptive model – one where people risked possible retaliation, their jobs and votes – bolstered by historical data and facts – spurred on by the urgency of it all and permanency of any failure – with its effective use of the raising of voices and the disruptive media of talk radio and digital news – what can we learn from this stunning success? I don’t propose an answer, but I do pose the question – and I think we should pose it more often.

It is said – “The Disruptive Leadership Model™ empowers organizations to purposefully reach that point which is outside of the business as usual current instead of depending on hope and luck. It is a very effective model for empowering people and organizations to responsibly come out of a comfort zone and produce results that would have never occurred in the paradigm of business as usual. In fact, most breakthroughs change the future of the person or company [or organization] forever,” – Ted Santos.

In this year that has witnessed the loss of Maya Angelou and before that, of Nelson Mandela – what causes speak to you?  What change do you want to see? Make a little noise. Tweet a louder tweet. There are great tools today to bring disruption into very staid systems. Think less about the same ol’ way of doing things if you want to see big change in this, your, lifetime.

Try being more disruptive.  Once you dive into that pool and you learn how to swim – you might very well have changed your own future – and society will be the better for it.

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The Stalling Time…

Another treatise on women lacking confidence has come out and met with the usual national PR splash.  Put it in on the shelf next to the one that says we aren’t leaning in.  The lacking confidence one is by Katty Kay and Claire Shipman in The Atlantic’s May 2014 cover story, called “The Confidence Gap”.  Kay and Shipman write that, despite being just as qualified as men, women often hold themselves back.

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Well, let’s look at that for a moment, as a truth.  Why would that be?  Is there a reason we would hold ourselves back?  Back from the tippy-top positions.  The ones that require you to be super-glued to your job, working 12 hour days, being a bit ruthless to succeed, and for a time, putting everything – family, spouse, and self – on the back burner.

A colleague of mine who is, by any measure, at the very top of her field, has written a book – “Sweet as Pie, Tough as Nails”.  She has had personal sacrifice to be there, at the top, some of which I wouldn’t write about, but which would not settle well in my sense of success, balance, life.

In Lean In, Sheryl Sandberg examines why women’s progress in achieving leadership roles has stalled.  Stalled!  Now that is an interesting word choice.  And I would agree.  We have “stalled”.  But I believe it is a deliberate and intentional stall. And a healthy one. Men should try it.

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When men tell women what they lack or how they should change or do something differently, it comes with a certain “oh, well, they don’t really know us” – but when women receive accolades and get interviewed on national talk shows because they are “eating their own”, telling other women that yes, we don’t lean in enough; we don’t reach for the very top, we aren’t equal, we lack confidence, women perhaps rush to buy the book, rush to be better, to work harder, to read advice columns on how to ask for a raise, or how to lead, or how to get less sleep, and fit more hours in the day.

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As we sit here in our “stalling time”, let’s think about our success.  I won’t attempt to define it here.  Because that would be as wrong as telling us what we need to do.  For each one of us it will be different. For some it will be family, children, and being there for a period of time to fully participate in it all.  For others it will be years and years of education and then – a role as a doctor or researcher who will quietly save lives every single day, without time to think if she’s leaned in or not.

As the pendulum of home – work – home – work continues to sway, we seek equilibrium, most of us.  We seek balance and energy.  To walk through our lives energized, and not exhausted.  To not need Ambien to sleep and drown ourselves in coffee, or worse, to get on with our day.

As I look back at my 50-something advice to my 20-something daughters I say, go ahead and stall.  Now’s a good time.  You’ve got the education and the path is before you.  Stall, just for a while.  Watch your path.  Measure your life.  Lean in one way – or lean in the other way. Or lean a little bit in both.  Think of your tombstone and read the obituaries.  How would you like yours to read?  Think of, gulp, me.  Where do I fall short – and why?  What choices did I not have freedom to make?  What would the choices have been if I was free to make them?

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Stall.  Define yourself.  Lean in for no one. Have the confidence to stand still and think. When you put your foot forward on your path, you might know more about where you want it to go, rather than jumping on for a ride you may not want to go on.

Think about balance.  Think about pendulums.  Think about standing still.  Being quiet.  Look at the ocean.  Write your 5 year plan.  Write your obituary.  Write mine.  Stall as long as you want.  And remember, you can always come back and stall – again.

T-Shirts, Buttons, Songs vs. Tobacco and Addiction

Something great was supposed to happen 14 years ago.  They said it would.  We celebrated the day, the very day that would come – in the year 2000 – that the goal would be reached. 

The year was 1988.  We printed little t-shirts for 5 and 6 year olds.  They were bright yellow.  The kids looked so cute in them as they put them on and the shirts went right down to their knees, leaving little sneaker feet showing.  We had bright glossy banners and stickers, too.  Wow, did they like the stickers.  Their principals and teachers didn’t as they later found them stuck to the lockers and books and walls – sorry about that. 

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There were healthy snacks brought in and parents invited, too.  There was lots of press that day, the first day of school in 1988.  We picked the John F. Kennedy Elementary School in Providence for the press conference.  Mr. Kane was the principal.  I was in my 30s and I believed that if you could get these kids when they were little, then you could make it happen. You could make a difference.  I believed in that.

When they were 18 years old, in the year 2000, these bright-eyed children would graduate high school as the first “Smoke-Free” Class of 2000.  They would go forth into their adult lives living without the scourge of tobacco in their medical history, waiting like a stealth device to engage and rob them of their health and their lives, years later. Their children would be smoke-free, too.  And their grandchildren, and so on, and so on, and so on.  We were going to eliminate the use of tobacco in this country.  Nothing less.

We even had a song.  “Healthy hearts! Healthy lungs! We don’t have to stop! Because we will never start!”  We are the Smoke free class of 2000 – Two – 0h – 0h – 0hhhh!  That’s the way to go!”

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In RI, Keisha Knight Pulliam, who played Rudy on The Cosby Show, and served as the national ambassador for the SFC2000 came to visit.  I spent the day with her taking her around in a limo to schools and programs, ending at the John Hope Settlement House with Mayor Buddy Cianci.  I still remember “Rudy” saying, “Mr. Mayor, can I call you Bud?” in her fetching way (Bud was her little boyfriend on TV). The kids went wild.  There was no doubt in my mind that these kids would get it.  They would be smoke-free as 18 year olds.  We jumped for joy and sang and cheered and passed out those t-shirts, coloring books and stickers.

Over the next few years, the hoopla faded away.  The program disappeared as a priority rather quickly, and no one talked about it anymore. Notably, since the late 70s, one national health agency has raised in excess of $750 million in schools for their health program initiatives, with events held in every state.

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50 years ago this year we mark the first US Surgeon General’s Report on Smoking OR Health.  The report came out in 1964 and directly tied smoking to chronic diseases – specifically heart disease and cancer – but also other health threats.  It’s estimated that the rate of highs school seniors who smoke has fallen from over 38% to 16% today.  That’s more than a 58% decline.  We also know that each day, almost 3,900 kids under 18 try their first cigarette and more than 1,000 kids become new, regular smokers.

So how did we do with our t-shirts, vim and vigor?  And how are we doing today?  We do know a lot more about behavior change and about how hard it is to break addiction to tobacco.  We’ve nearly eliminated smoking in public places (including restaurants).  Yet we see the creep in cigar and hookah bars and efforts to smoke on beaches and in public parks taking on a civil rights tone of right wing America.  We see drugstore chains beginning to cave, under the leadership of mega-CVS to make tobacco harder and harder to purchase.  We are taxing tobacco to oblivion and beyond (and are making our state budgets dependent on it, too).

What else is going on?  We are seeing sales of individual cigarettes and flavored cigarettes rise.  And now we have e-cigarettes flourishing.  If you go to an Ivy League college watch what the students are smoking – long, thin, dark brown, European cigarettes, unfiltered – they are cool, man – cool from Europe kind of cool.  Tobacco companies have taken their wares and gone oversees – travel to Paris, China or just about anywhere and the stifling waft of smoke overcomes you in restaurants, bars, and just about everywhere. 

Our campaigns now focus on adults and on photos of people with half gone faces from jaw surgery and videos of scarred and mutilated women begging us to stop.  We have very direct warnings on cigarette packages. We have tobacco cessation programs anywhere you want to find them – and Nicorette – and fake cigarettes you can hold.  I have a colleague who walks around with a half smoked cigar – he lights it up about twice a day and takes a big puff, and then stamps it out.  He has custom made shirts and cufflinks and drives a Jaguar.  With this little brown rotting cigar butt clasped between his fingers.

ImageIn this 50th year of the Surgeon General’s report (also the 50th year of recognizing February as Heart Month), I don’t hear a call for the “Smoke-free Class of 2028” from any of the health agencies. The only website of the 3 who began the original program that even speaks to smoking and children in any significant way is the American Lung Association. 

The five year olds who began as our nation’s Smoke-Free Class of 2000 are today about 31 years old.  The majority have probably taken much of the same path – gone through school, natural rebellion times, their own personal trials, wins and misses, and are probably settling in a career path, finding a mate, and thinking about having their children, if they are not already parents.  So, now, they have bright shiny faces looking up at them. 

The Secretary of HHS, Kathleen Sebelius has said that if smoking rates continue as they are now, 5.6 million children who are alive today will ultimately die prematurely from smoking.  One of every 13 children.

I ask the question but I don’t have any firm answer or even a guess – who will ask these children to be smoke-free?  It’s probably not even talked about that much in our homes as drug and alcohol an texting while driving, and HIV and other issues have taken front and center.

So, what is the tobacco industry doing to recruit its brand new members today?  You can be sure they are not giving out t-shirts, and buttons, and singing songs.

Dogs and Wolves – Reconnecting with my professor…

Dogs and Wolves.

This, above, is the blog of Dr. Elaine Chaika. Check it out!

Elaine was my professor of linguistics tens of years ago when I was a freshman at Providence College in Rhode Island.  An elective, at the time, Linguistics, soon became a weekly fascinating class for me.  This was a unique time to attend Providence College.  I was in the first full class of women.  Elaine was also a rarity in that year – one of the first female lay professors – much less a person of Jewish faith in a campus of Catholic priests and nuns.  PC was stretching and straining at the time – and all these years later it has done well for it and by it. A few incredible glitches recently, but that is a story for another day.

I lived on campus and had two roommates who were both from New Haven, CT.  We had friends on either side of us also from Connecticut.  PC drew quite a few Connecticut girls in that first year.  Sometime in January, sitting in our rooms getting ready to go out and having a few cocktails ahead of time, we all seemed to have gotten quite sick of each other, or at least noodgey with each other.

That very well may have come from living in such tight quarters.  In addition to our space issues we also had issues that came from the educating of the Dominicans on campus.  Such as, no, padres, women do not shower in one big shower room (they having just moved us into what before were male dorms).  And, no, it is unsafe to put metal bars on our picture windows on the 1st floor to protect us from boys who may have thrown caution out the window in favor of raging hormones and decided to leap in and fetch us) – because, well, dear Fathers, suppose there was a fire.  How would we get out in an emergency?

I digress.  After having a few drinks, we were picking on each other, and I was trying to play peace keeper.  Then someone said – “you know, none of us can understand anything you say – we never have”.  You blab on and on and we laugh at you because you speak so “funny”.  I couldn’t wait to bring this up in class – with Dr. Chaika.  And I did.

We talked about dialects and there being no “right and wrong” about speech.  I felt better.  But yet, I found I became acutely aware and self-conscious, as I equated sounding “funny” with sounding “dumb”.  Soon, meticulously articulated “r’s” came into my vocabulary.  And enunciation of familiar RI words became rote.

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I went home in the spring and had dinner with my extended family – 6/7ths of them Portuguese.  My mother said – “I don’t understand anything you are saying.  You are talking ‘funny’”.  And so it went.  I now sounded “funny” wherever I was.  I’d only hoped I didn’t also sound “dumb”!

I remembered Dr. Chaika’s easy ways, common sense approach, and I recall thinking she was truly one of the most intellectual professors I had ever had.  Not merely teaching out of textbooks, but philosophizing about life; putting lessons into context of society and history.  She was a favorite memory of a strained and odd time at this college.

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Tens of years later, Dr. Chaika is my client!  We re-met on Facebook.  She is a woman of high technology, and at our first meeting she taught me things about computers and the technology of writing using resources that are “right there, dear!” that I didn’t know. She is an author, reviewer, collector, but mostly a scholar. 79 years old wearing tight corduroys and 3 inch mules, running up and down the stairs to share things with me, with her two Maltese dogs scurrying around to catch up with her.  With Nooks and iPads and laptops scattered in every room – and her office with a four foot graphic designer-type computer screen – what a treat.

Today I am happy to share her blog.  That is the link you see, above, Dogs and Wolves.  Elaine is writing a new book about dogs and communication, perhaps to be titled, “How Dogs Civilized Humans”.  She will talk about the interconnection of dog and wolf.  And so much more.  It is my pleasure to support her in growing her social media strategy and her brand as her book grows and develops. The little ones you see, below, are Skeezix and Scamp – one hesitant and a little worrisome – the other – ok, let’s do it!  They say we all have our yin and yang inside of us…

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If you would like to follow Elaine, she has a plethora of ways to do that:

Her blog:  http://dogsandwolves-smartoldlady.blogspot.com/

Her other blog:  http://smarthotoldlady.blogspot.com/

Her website:  http://elainechaika.com/

Her FB page:  https://www.facebook.com/AmazingDogsYoursAndMine

Her Twitter:  @OurAmazingDogs – https://twitter.com/OurAmazingDogs

Are YOU the story?

ImageIn the last few weeks of 2013, there were several stories involving the media that were not about the issues they were covering or the content they were seeking to cover.  Instead, the story became about the ‘journalist’ or media personality.  The story became lost in an inopportune use of a word or phrase, an open microphone, a misguided Tweet, or an on-air gaffe, that when judged in a short time frame decidedly came out all wrong.  And in a nano-second of social media the ‘journalist/personality’ BECAME the news.  The cause, the issue, the rich content, was lost, and all cameras turned inward on the reporter.

The traditional definition of a “journalist” is:  “a person who writes for newspapers or magazines or prepares news to be broadcast on radio or television”, while the traditional definition of a “reporter” is similar:  “a person who reports, esp. one employed to report news or conduct interviews for newspapers or broadcasts.”.  Also, a “commentator” is defined as “a person who discusses news, sports, or other topics on TV or radio”.

However, we are living in a time of citizen journalism, and definitions are changing rapidly.  We are also living in a time of incredible speed pressures on reporters, journalists, etc. to get the news out there – “social it” while you are still finishing the last line of copy, in some cases.  No time to go back and check accuracies or choice of words – do that later.  “Say it” – becomes the mantra designed to target ratings, sweeps, or simply radio phones to ring.  Or to be first.  Always, to be first. And in all of this – a question:  ‘where did the news go’?  What happened to the point of the story? 

Did the reporter – or spokesperson – say something that I refer to as “red flag words”?  We all know what those are.  Those of us who work in the field of public relations and crisis communication know it far too well.  An example:  Vice President Biden leans in to President Obama and comments on signing of a major healthcare bill.  Straight into his open mic go the words, “this is a big fucking deal”.  Healthcare got lost in a hushed rush to dissect the line, get it on ‘the news’ – and there it goes….out to the masses. (PR people the world over simply closed their eyes, in a thought of solidarity – ‘oh, Joe…’).  Another example:  The Pope recently issues a statement that talks about the importance of training men in the clergy.  And he remarks that failure to do this and make the right choices creates “little monsters”.  Really?  Can you write the lead headline? 

Using these examples as well as one recently by Melissa Harris-Perry where she made humorous remarks about a photo of Mitt Romney’s huge white family, complete with a single African-American grandchild placed on his knee, went very bad.  This reporter/commentator was raised in an interracial family – as a matter of fact, she relating to being that single black child in a large white family, herself.  In moments, moments!, the story was lost in an ever thundering query of a poorly placed racial joke.  Made by a black reporter.

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So, while it can be an average person who makes these gaffes, it is particularly troublesome to see the media do so.  It seems altogether out of professionalism to see the reporter not standing behind the story, but come out in front of it and become the story. 

This usually happens quite by accident, but with increasing frequency.  And what do you do when it happens?  In the world of crisis communications, most professionals abide by a “never say ‘no comment’” advice line to clients who find themselves in situations with a demand for comment from the media.  You can say nothing, but you must say something, is the way I’d prefer to advise.  But ‘no comment’ is a lightning rod.  It implies you have something to hide.  Or you doubly agree with your gaffe.  Or something worse is happening behind you.  And the media (once your friends) – and the public – dig in.  The story festers.  History, if there is history, gets dragged out, and the story reinvents itself over and over and develops, what we call “legs”. 

People, be careful of your words.  Don’t let a word become a story, or take your story and stomp on it. 

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Here is Toronto Mayor Rob Ford dancing to Bob Marley’s “One Love” – does anyone know why he was dancing?  (To celebrate jazz in Toronto, which was being recognized in congress that day).  This came after Ironically, a response Ford gave to the speaker of congress who had asked him for an apology:  Ford said, “How about, ‘I am so sorry’? Is that as good as I apologize? Or, ‘So sorry?’ Which one do you want, Madam Speaker? Like, ‘Super, super, super, super, super, super, super sorry? So sorry?’ Do you want me to dance around?”

Oh, well…..

On the eve of Obamacare…. “to our health!”

Many who know my family have followed the journey of my daughter’s sudden, inexplicable illness, and her road to recovery.  A ‘sore tummy’ turned into two emergency department visits in 10 hours, a five day hospital stay, in-patient and then out-patient testing.  More questions than answers.  More doors to open than close behind us.  Five days of constant, never-ending pain, five days of morphine drips and anti-nausea meds (to tolerate the morphine); food replaced by IV fluids.

Three days with sheets unchanged and no sponge baths or washcloths to ease her discomfort – three days with the same johnny.  No little pile of towels placed precariously on a chair or table.  I was so distracted by talking to one specialist after the other – they all started to look like each other with big question marks on their faces as they came into the room. There were the crisp white-coated fellows from Beth Israel or Brigham, I can’t remember now.  They were eager to show us they had washed ‘their’ hands – they held them up and rubbed them in front of us, like surgeons waiting to dive into their task.  Their white coats were tailored and went all the way down to their knees – designer, no doubt.  These young people were beautiful – so nicely dressed, so clean and crisp, pretty jewelry, precisely coiffed, nice shoes.

For four nights I slept on a geri chair – the newest thing, they said.  Designed for those family members who wished to spend the night at bedside.  Orange plastic with breaks in two places – one at your waist and one at your knees.  When you stretched out – trying desperately with your weight to make the chair click open like a rickety barcalounger, and stay flat so you could stretch out, it would only do so until you shifted, then the weight would push the parts together, and the chair would begin to catapult forward.  A torture chamber, better replaced by a big ol’ easy chair – they should demand their money back – I’d write testimony to help with that.

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On day 3, I looked up and said, “who changed your sheets?”  “What do you mean?” my daughter replied.  Mom went into action and sheets were changed, but still no new johnny or face cloth, or warm soapy water – no toothbrush and little toothpaste in the kidney shaped plastic dish. Was she that sick, I thought?

On day 3, we learned about an emergency code the patient could call on the phone – a kind nurse suggested it.  And yes, late at night, a team arrived – an administrative team.  My daughter, who is skilled in conflict resolution, ran the ‘code’ herself.  She explained what had happened and how we knew no answers, how her sheets hadn’t been changed, and for her first foray into solid food she was brought pasta with red sauce.  “What were you thinking?”  At five a.m. one morning, a phlebotomist came into the room, a dashing young man, flipped on the overhead light, went between the geri chair and the bed, flipped on the bed light, grabbed her arm and put the tourniquet on as he shouted, “good morning! I have to take your blood!” and she yelled, “go away, what are you doing – who does that to someone when they are dead asleep and sick?  What are you thinking?”  (That moment was my first ray of hope she was getting better.) And how the nurses – some of them – would lie – would tell her they were going to get the doctor, and not do that.  Would tell her that the big team was coming in from Beth Israel or Brigham, and they never did.  Five days.  And she was waiting.  Maybe the ‘experts’ would have answers.  But they never came. The emergency code team took their notes.  We wondered if some famous star had sued the hospital and this team was part of their settlement to the patients left behind.  To this day we don’t know what happened after that late night bedside meeting – because no one ever told us.

Eventually, the situation improved.  She took her first steps down the hall.  Straight from her bed, without having even sat in a chair yet.  “Oh, oh..”, I thought.  And, yes, lickity-split, she was being prepared to go home.  No answers.  Lots of medication.  IVs being pulled out.

Recovery took some time.  Just walking in the door and seeing her cat made a world of difference.  Couch all made up with sheets and pillows.  Mom by her side – where else would I have been?  And time did its miracle.

Tests followed – one by one – answers, we needed answers.  Almost none were to be found.  “Don’t look further (in literally a hushed whisper) we don’t do that today, in our ‘new’ medicine – we just treat symptoms and if they go away, wonderful. We don’t look for more.”  Really.  Almost by accident we find some fixable vitamin deficiency and it gives us something to work on, a crack in a door, and we go down that path.  And still do…  We have no diagnosis.  Just questions.  Just a somewhat uneasy feeling and a “what the heck was that all about?” nagging, nagging question.

As 2013 comes to a close, I have four days left to pay the bills that have accumulated – to get the medical tax deduction for this year.  I might as well.  I have been collecting bills, notes, forms, tests, hospital ID bracelets, etc. in this folder that is so thick it no longer closes.  Tonight I open everything, decide to sort it, which bill to pay, which one to dispute (two ED visits in 10 hours? – don’t charge me for both when she should never have been sent home…please…thank you…), and then – the big question – how much has been covered by insurance?  I take a photo.  Each pile is a different ‘vendor’, if you will.  We were in one place, but I’m counting 10 separate places to be paid.

ImageMy daughter is very smart.  She is a grad student at a Massachusetts university – one with a unionized faculty.  One that offered her a position assisting a professor (and by the way, that makes you a union employee, and by the way, you also get health insurance, and there is no charge to you for it).

Our bills will total $50,000 gross.  Or more.  The door is still open.  Massachusetts was the first state to have Romneycare.  I will be doing final calculations, but it looks like we will have less than $2,000 to absorb.  Maybe $1,000 if we can negotiate based on being an adult student with little income/assets.

I am grateful.  If this were part of the health insurance plan I paid $1,500 a month for previously, in RI, I would have been looking at a bill of $6,000, $10,000 or more.  For a five day stay.  Two CT scans?  $2,500 each.  Really.

Tonight, as I write this, the Christmas lights fill my living room.  The house is quiet.  I have poured myself a glass of wine.  Red wine.  It’s healthy, isn’t it?  My daughter is going out with friends to celebrate Christmas. And yes, I’ve asked her if she’s taking her prescription vitamin and when is her next injection….and blood work….and the path is open before us.  But finally, at this odd interlude between Christmas and New Year’s, I’ve had time to think – and ponder the thousands of stories far, far worse than ours – the stories of extended hospital stays, and cancer treatment, and open heart surgeries, and extensive rehab stays.  And I smile.  It seems like an odd reaction.  But Obamacare will save lives.  Indeed it will.  It will also do more than that.  It will open access sooner.  It will force payers to force payees to lower costs.  It will empower patients as never before.  It will not be perfect.  It will moan and groan and cry and quake as it births itself to a whole new future for us – “we, the people” of this great American nation.

“Yes…to our health!”

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(that’s Mom’s glass of wine)

Life on the edge of nothing…

She is 86 years old.  My aunt.  My mother’s sister.  Not many people know about her because I don’t talk about her.  Call it tradition, but in our family, someone with mental illness was ‘invisible’ – we don’t “talk about such things” – they were sent away – out of sight and out of mind.  Portuguese families who came to this country and became citizens were always afraid of something that would ‘get them into trouble’ – fear of being sent back?  Not sure.

When I entering college I decided to major in psychology.  Maybe more to understand my family’s odd behavior than to understand my aunt.  I grew up in an extended family – all on my mother’s side – along with my silent German-English father.

My aunt and I got along quite well.  We do to this day.  She has never held a real job – some “piecework” in a jewelry factory on a “foot press” for a few weeks or more at a time.  A long time ago. She made some beautiful, highly detailed crafts, wrapped them in Saran Wrap, and sold them at small boutique shops, too.  And she washed and ironed shirts for her brother, my uncle, who owned a restaurant/bar and he paid her 25 cents each to do them.  25 cents.  Looking back, that was cruel.  Almost a sick joke.  She got out the stain of grenadine meticulously – scrubbing them on an antique wash board – in steaming hot water until her hands would bleed.  She ironed every crease, and starched them perfectly.  They were set up on a small rack in a corner of the kitchen – those shocking white shirts – those perfect shirts – those 25 cent shirts.

When I was in my teens they took her away one day.  She tried to melt red candle wax in a porcelain pan on the stove, and pour the wax into molds – always the creative one.  Nearly burned the house down and freaked her right out.  Her father, my grandfather, went after her.  It was a nasty scene.  And just like in One Flew Over the Cuckoo’s Nest, they came.  The small white van – the men in white.  Really!  They wore white pants like ice cream cone servers. The pants were whiter than the straight jacket they put around her as they took her 5 foot slender shrieking body out the door sideways, held like a rolled up carpet.  Or the stogey my grandfather held between his fingers as he watched her go. One more time.  Then he played cards.  His Solitaire game.

She came back in a week.  I remember she smelled so different.  And she walked like my Walking Debby doll.  She stared at her feet and moved them one at a time.  She’d look up and smile.  They called it The Haldol Walk, the look, the s-l-o-w  m-o-t-i-o-n of it all. That scene would be repeated numerous times, each time I would be a little older, a little more removed.  Waiting for my own foot out the door.  Can I go yet? Please?

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In the quiet times of her mental illness, she was my best friend.  Children, especially only children, gravitate to single aunts with time on their hands, as did I.  We made pictures.  She laughed at how talented she was and how I had none of it, whatsoever.  She marveled at how the talent had not made it down the genetic chain.  (But would the mental illness?)  She taught me to crochet. With size 0 metal crochet hooks.  And we made pies together.  Peach pies.  Pies you made from scratch, dough and all.  We made lots of them, using tin pie plates and wooden rolling pins. We used my grandfather’s fishing sinkers as pie weights.  Sometimes we made apple pies.  I remember slicing slivers of butter to put on top before we closed them up for baking. And cutting little patterns in the dough with a fork.

We liked to catch kittens, she and I.  There were always strays.  We would hide them in the greenhouse at the back of the yard.  Sometimes we would feed them for weeks and weeks, and play with them until they grew and started to walk around the yard, and over to the house and, well, then they would just disappear somehow.  My aunt and I never knew where they went.  That was sad.  We waited for new kittens – they always came.

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She even drove a car.  A 1954 Rambler with a push button gear box on the left of the dashboard.  She wore high heels – stilettos – my favorite pair were made all of wood with beachy symbols on them and straw.  I wonder if they were like those that Annette Funicello wore in Beach Blanket Bingo – my aunt loved Annette.

The years passed.  I went to college.  I grew all the way up.  I got married and had my own children.  She was lost for many years, my aunt, not sure how she managed.  She didn’t live at her home anymore – but she was never homeless.  One day I was called from a hospital and when I went to see her it was a bad scene.  She was in restraints.  Wild, really.  Didn’t know what my name was, though she did recognize me.  She spent some time in a mental hospital, and then seemed to be really fine.  But she hated her meds.  She couldn’t draw.  She couldn’t read.  Her mouth was dry and pasty.  And she fell asleep a lot.

Years would go by.  Another call.  Local police.  She was throwing her clothes out her window and could I come.  Another hospital.  Four point restraints.  Looking a little bit like the Exorcist child now.  Age had done that.  24 hours, and meds returned her to sanity.  And then to the mental hospital.  Another 10 day hold.

Did fine.  Returned back to her apartment, but they were treating her badly there.  So I helped her apply for SSDI – the first “handout” she had ever had.  She still never had health insurance, or food stamps, or subsidized housing – or a family to help – just me – now ashamed at how little I had been there. We went to the psychiatrist and certification came pretty easy.  We managed SSDI with the help of a pro bono attorney who knew that I would be the one to pay for his services, so he said, ‘never mind’.  Today she lives in subsidized housing and she still drives.  She has food stamps, though rarely uses them.  She is quite healthy.  Vision failing a bit.  86 now.

My whole life I have tried to keep her out of ‘the system’ – the places that would send men in ice cream pants to wrap her up like a rug and take her out the door sideways.  And what unspeakable things happened to her before she would return, flat, dissolved, absent? Those men and women in pale uniforms who would tie her up in brown leather four point restraints covered with white wash cloths to guard her thin wrists and ankles. The ‘new’ psychiatric hospital that tried talk therapy, and group therapy, and she would just smirk and smile and tell them ‘you’re crazy, you know…I’m not crazy…what are you talking about…ehhh, you’re kidding me. Nooo.’  She would smile.  I would, too.  Hoping the laugh coming over me would stop.

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She has humor and gentleness.  Except for the time she locked me in her apartment when she was in her 50s and told me that she could kill me and I could disappear and no one would ever know what happened to me.  Hmm.  I stayed away for a long time when that happened – me, trying to talk my way out the door – she, standing in front of it – grinning.  I was a mother now – no time to go getting cut up in little pieces and taken out with the trash.

Today we shop together; I take her to the doctor’s; I take her to social security when our new system begins to question her and I talk nicely to the 20 something year old clerk who says to me, ‘she never did pay into the system, did she?’ and I just smile.  She holds her own, my aunt.  If I try to help her with all the papers she has stuffed in her purse, she swats at me – with her strong, frail hand.

She does well away from the systems, the mental health professionals who had no idea then or now about what was wrong and how to fix it.  She has eked out a life for herself.  She has done it alone, and in silence.  The silence of mental illness.  The dark rooms behind wooden doors, behind metal doors. The programs that do not work.  The system that only sought to wrap her up and throw her away.  The meds that eased her angst, but flattened her personality.

Today we house 30 people a night, I’ve read, in the emergency department of RI Hospital – because there are no beds.  A teenager who wants to kill himself resides, as an unregistered patient, at another RI hospital because there are no beds – and nurses take turns buying him McDonalds’ food because he can’t get a hospital tray – remember, he’s not admitted nor discharged.  He is not even there.

And millions were spent on a big new building at the other psychiatric hospital for – how many? – 24 beds.  24.  And they were almost at once – full.  No room left there.  We closed the IMH (Institute of Mental Health) years ago, and our mentally ill are on the streets, or maybe the lucky ones are in day programs and group homes, or living somehow marginally.  Where are the violent ones?  Where are those who at one point or another think about the unspeakable – or do it?  We read about the few.

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I have spent my career, for the most part, in the nonprofit world – always on the periphery of mental ‘health’, physical ‘health’.  But now I am raising my voice to tell a story – of one person, one red haired, slight, 100 pound lady who walks on her toes, who listens in the dark to her radio – who warms up food in hot water because the microwave (my gift) is a mystery.  She whispers on the phone in the closet – when we speak – because “they” are listening.  And she has one small lamp on, too, so “they” can’t see her.  She’s convinced the security cameras can see around corners and into her room.  She talks to me about current events, about how it has been 50 years since John F. Kennedy was assassinated. Imagine that?  50 years.

Each December and each April my daughters receive a birthday card with $2 or $3 or $5, cash in it.  At Christmas and Easter there are cards, too – along with this wish for them – written in flamboyant and beautiful cursive writing – “I hope you are well.  Remember, if you don’t have your health, you don’t have anything.  Love,”