Illegitimi Non Carborundum

It has been almost eleven months since John was diagnosed with Therapy Related MDS, a relatively new and currently incurable cancer of the blood.  Our initial prognosis with six months extended, thanks to a second opinion, to two years.  These months have flown by, but looking back, I am proud of how we have settled into a "new normal" - a daily way of living with this new challenge.  A new normal marked by grace, partnership, support and a quality I've come to recognize as resiliency.

Resiliency - elasticity, malleability, flexibility, plasticity, buoyancy - I've long recognized this in John.  With a history of non-Hodgkins that required the stem cell transplant that is the cause of his current illness, five hernia operations, three bouts of skin cancer, and macular degeneration, one might expect him to rail against the heavens or to just give up or give in. But he endures.  He keeps getting up.  He takes a day at a time and never relinquishes the fight.  He stays remarkably present and positive. He remains optimistic and reminds me that he's not a statistic.  He reminds me, too, that he beat the odds once, and he can do it again. That he can endure until there is a breakthrough that will extend his life with me.

What I haven't recognized is that his resilience has rubbed off on me.  I've thought of myself as tenacious, strong, and determined; and those are not bad qualities. But I like resilient better.  It's more fluid, less easily bent or broken.  Definitely an asset during these tenuous days.

And these days are tenuous.  There are the ordinary breakdowns of everyday life.  The breakdowns we all experience. We lose our TV picture. It's so hot that our potted plants all wither and die.  We keep receiving those calls that our computer is infected or someone can help us with college loans we never took out 50 years ago.  A light on my dashboard lights up for the 4th time, still not fixed after three trips to the dealer. The bombardment of news gets more frightening with each passing hour.  I'm not sleeping well.

What's a resilient soul to do?  Well, work patiently with the disembodied voice in technical support to recover the TV picture and be grateful we got a living breathing soul.  Remove the dead plants and wait till it cools off before replacing.  Stop answering calls from locations we don't recognize.  Take the car to the dealer and tell them the car will be returned if they cannot fix it properly once and for all - they did.  And limit the news, which also cured the sleeping problem.

Then, there are the bigger breakdowns.  The medical assistant that we have come to rely on for information and support suddenly leaves the clinic to move to another city.  A few days later, a dear friend who has been a key member of my personal support system lets me know she is moving, a wise decision for her, another loss for us.  A shot that we have hoped would make transfusions needed less often has had no measurable effect.  

What's a resilient soul to do?  Well, learn to access and interpret John's blood test results on the computer.  (Actually, doing so makes this resilient soul feel just a little proud of herself). Get to know more of the clinic staff. Plan a trip to see our friends after they are settled in, giving us something to look forward to.  Work with our doctor to design changes to John's treatment plan.

This is our new normal.  To take in new information and adjust, as quickly as we can, as patiently and gracefully as we can.  To work with each other and our network of support. To seek solutions rather than rail against the problems.  To focus on what is within our control. A day at a time, some days an hour at a time.

I do like resilient better.  It's more fluid, less easily bent or broken.  Definitely an asset during these tenuous days.  Definitely, a valuable asset for an unknown future.

One Part Reflection, One Part Rant, One Part Resolution

I cannot recall a time when I was unaware of the power of words.  Living with my mother and brother in her parents' home, with a young uncle, an aunt and an aunt by marriage, at the end of World War II, offered a primer in the use of language to convey hurt, worry, anger, resentment and fear.  A primer in the use of language to cajole, ingratiate, belittle, manipulate, and, conversely and thankfully, occasionally to soothe, comfort, console, and reassure.  Unfortunately, too much of the former, too little of the latter.  

Every male of fighting age in our extended family was enlisted and many engaged in combat duty.  Most of the families in Milwaukee's blue collar neighborhoods, probably throughout the country, were in the same boat, coping with the same stress levels, with the same insufficient training and experience to deal with it.

So I learned quickly to pay attention to tone of voice, to sense when emotions were high and arguments were likely to escalate.  I came to recognize the words and phrases that could trigger a volley of insults and accusations, name-calling and laying blame..you never, you always, you need to, why can't you...etc., etc.  I waited for apologies that never came.   I remember the clenching of my jaw, the twisting in my stomach, the tears I struggled to hide. I remember wondering how someone could be so sure of what someone else really meant. But most of all, I remember the bewilderment I felt when people whom I believed loved each other and needed each other's protection could be so deliberately hurtful.   I remember feeling very unsafe.

Those years were the impetus for my lifelong interest in communication - what constitutes effective communication?  What forces impede communication?  What limits our ability to discuss differences?  How much responsibility do I own for how you hear me?  How much responsibility do you own for how I hear you? Each answer leading to more questions.

I now look back on those early years with some understanding and compassion.  People were so fearful, so unprepared.  We lived in isolated neighborhoods, with limited information trickling in via newspapers, news reels, the radio.  We didn't know what we didn't know.  Our perceptions were shaped by rigid cultural norms, strong religious influences and carefully crafted political propaganda.  Our behaviors by history and habit.  Yet, somehow we managed, eventually, to move forward, certainly with some scars, but together.

These past months, however, I find myself grinding my teeth at night, frequently feeling my stomach in knots, fighting back tears of frustration, cursing at the TV, shaking my head in disbelief at what I see and hear in the news, in threads of conversations and shares on Facebook.  Language to convey hurt, worry, outrage, resentment and fear.  Language to cajole, ingratiate, humiliate, threaten, belittle, manipulate.  Language designed to distort, distract, deny.   Perceptions shaped by rigid cultural norms, strong religious influences and carefully crafted political propaganda.  Our behaviors defended by history and habit.  Emotion and belief superseding thinking and reason.  Negotiation and compromise becoming dirty words. And the result - more divisiveness, a rise in bullying and hate crimes, cynicism and distrust.  Lying called fake news.  Threats called bluffing.  All exacerbated by our sheer numbers, the speed with which information - true, false or mixed - can be spread to a population too often unable or unwilling to sort it out.  

What's a person to do?  Well, this is what this person is doing, for what it's worth.  Because I have no idea if we, as a country, will weather this toxicity, but I suspect I won't unless I -

• limit my time on Facebook and with the news,
• confine my energy and attention to a few FB sites I trust, preferably those with moderators who help to insure a modicum of civility,
• subscribe to Snopes daily debrief to help sort the wheat from the chaff,
• insert a question or comment where I think it might make a difference, but only where it might,
• call and write my Congressmen to voice my opinions and concerns,
• monitor my own language, particularly when I'm angry or afraid,
• make sure I find a way to laugh in the morning and record gratitudes before I go to bed,
• spend some enjoyable time with John and connect with a friend every day,
• learn more about how to discuss issues more effectively across the chasms of religious and political differences, and
• populate my world with others who want to help bridge these chasms rather than widen them.

For, what else is a person to do? 

Soul Searching

"I didn't do enough."

~ Oskar Schindler, "Schindler's List"

The more I do to voice my displeasure and dismay with this political regime, the more I realize that I didn't do enough to help prevent it in the first place. 

I had thought I'd done enough.  I voted, as I have every presidential election since I cast my first vote for JFK.  I consider voting a privilege as well as a responsibility.  I am, relatively speaking, informed.   I've read the Constitution, not only in high school, but as recently as two years ago.  I continue to read a variety of material across a wide spectrum of political belief.  I've never been reluctant to talk about politics nor unwilling to listen to others' points of view.  

But I left the heavy lifting to others, even when I sensed, as early as a year ago, that he could win.  Even though, I believed he would do exactly what he is trying to do.  Even though I called him narcissistic and unwell from the get go.  I know I could excuse my sitting on the sidelines with "what can one person do" or "my vote won't count anyway as I live in a red state" or "John needs me more."  I could fall back on believing what the media was predicting (I didn't).  I could blame everyone else, and heaven knows, there's plenty of folks to blame.

I don't excuse myself.  However, I also do not mean to chastise myself, but rather to let this awareness fuel taking action.  I am beyond feeling guilty, but am committed to look for ways to encourage others to take action and to support those who do.  I've been calling my (theoretical) representatives, almost daily. I've e-mailed and continue to engage with staff as long as they stay open to alternative points of view. I've signed so many petitions that I suspect I've signed some more than once.  I've spent hours on FB, probably too many, but strive to interject a call to action wherever I can.  I take time to acknowledge the efforts of others who are marching, deciding to run for public office, moderating groups (what a job!), offering new ideas, standing up in their own party, etc.  

And, yet, I continue to ask myself, "What else can I do? Tonight, I'll read the next chapter in Don't Think of an Elephant by George Lakoff and keep recommending it. Tomorrow, I'll send another check to ACLU - they have the lawyers, they have the grit.  Next week, show up to the nearby coffee shop to help write postcards of appreciation as well as postcards of protest.  I'll post this.  What else? What works?  What could work?

If, as you read this, especially to those of you in France who are learning from our mistakes, you have other ideas for effective resistance and change, I would be delighted and ever so grateful to receive them.  I will pass them on wherever I can.  I will do whatever I can. 

I Don't Get It

"Democracy cannot succeed unless those who express their choice are prepared to choose wisely. The real safeguard of democracy, therefore, is education."  

~ Franklin D. Roosevelt

and

"The aim of education is the knowledge, not of facts, but of values. "  William S. Burroughs

"Knowledge is power. Information is liberating. Education is the premise of progress, in every society, in every family."   Kofi Annan

"A quality education grants us the ability to fight the war on ignorance and poverty."   
Charles B. Rangel

"It is better to know some of the questions than all of the answers."    James Thurber

"The goal of education is the advancement of knowledge and the dissemination of truth. "  John F. Kennedy

"There are many problems, but I think there is a solution to all these problems; it's just one, and it's education."  Malala Yousafzai

"Education's purpose is to replace an empty mind with an open one."    Malcolm Forbes

"Education is the ability to listen to almost anything without losing your temper or your self-confidence."   Robert Frost

"The illiterate of the future will not be the person who cannot read. It will be the person who does not know how to learn."    Alvin Toffler

"I believe education is the great equalizer."   Dave Heineman

"Human history becomes more and more a race between education and catastrophe." H. G. Wells

When did education become suspect?  How has it come to follow that being educated automatically means you must think you are elite or better than anybody else?  When did being educated become a threat, or something to be belittled, demeaned or dismissed? How could the President of the United States boast that he loves the poorly educated?

The more I see that his lack of character and his immaturity, his blatant hypocrisy and outright pathological lying are condoned or tolerated by his followers - or that his weekly golfing excursions, executive orders, and proposals clearly benefit himself and the wealthy and yet, they still think he cares about the average American, well, I can understand his boast. Why wouldn't he love the poorly educated?!

I am a second generation American whose paternal grandmother did not learn English and whose father did not graduate from high school; yet  I was the first female in my family to go to college. I not only became an elementary school principal but also went on to create and manage a boutique consulting firm for 25 years. I know the power of education. Not only a formal education, for I have met many learned individuals who didn't go to college and much of my education has occurred since graduating.  But a good formal education can also inspire -where it has been absent - curiosity, creativity, thoughtfulness, tolerance, a questioning mind, critical thinking skills and perhaps above all, the desire to keep learning. 

In only two generations, our family rose from among the working poor to solidly middle class.  My brother became a dentist and then a master wood worker, my sister a choral director and now a clinical social worker.  Each of us has learned from teachers, scientists, books, the arts, friends, strangers, each other.  Learning formally and informally.  Learning to love and appreciate learning.

It is because of our educations that we have realized the American dream of having it better than our parents did. It is with the help of our educations that each of us made career changes mid-stream, that we have weathered the vicissitudes of life. It is with the help of our educations that John and I are managing his health care today.  

That this President loves the poorly educated rather than encourage them to become educated, that he has a Secretary of Education whose intention is to gut public education, that he boasts that he doesn't read, that his vocabulary is that of an average 4th grader, that he tweets reactively and irresponsibly in the middle of the night- is an embarrassment at best, a disgrace at worst.  That he does not believe in climate change and demeans the scientific and intelligence communities, that he supports defunding the arts and educational opportunities for the disadvantaged bodes harm for our economic and cultural future. 

Yes, I am concerned, upset, even fearful.  But  I will continue to write, to call my representatives, to express my concerns and share my observations.  I will continue to read, to learn, to challenge my assumptions and challenge the assumptions of others who are willing to learn with me..  But when I am overwhelmed by the magnitude of this disaster, I will rant awhile.

And last, but definitely not least...

"Education is our only political safety. Outside of this ark all is deluge."

~ Horace Mann

I Digress...

"In any society where the mores are strong, laws are not needed.  In any society where the mores are not strong, laws are not enough."

~ unknown

I have searched for the origin of this quote, one I have referenced for the last couple decades.  The closest I have found is "When mores are sufficient, laws are unnecessary; when mores are insufficient, laws are unenforceable."       ~ Emile Durkheim, 19th Century French sociologist.   

Mores, as defined in my Oxford American Dictionary, are the "essential or characteristic customs and conventions of a community."  And this is why I digress from sharing about our personal challenge, for I see a much larger challenge in the months and years ahead.  The threads of compassionate and generous mores that I thought I could see developing over my lifetime have unraveled in mere months.  The venom and hatred, the legitimizing of White Supremacy horror is something I fear will not and cannot be repaired in the rest of my lifetime.  

When did it become all right to mock a handicapped person, to call any woman, let alone a public figure a b...ch...., a c...t, a sk...k?  I cannot bear to print the entire words. When did it become ok to openly and gleefully threaten revenge?  When did it become ok to even hint that someone should be beaten up for opposing you?  It seems like an eternity ago when Senator McCain had the decency to stop hateful comments about Barack Obama, and those comments pale in comparison to what we heard these past months.  Yet many people were willing to overlook all of this and put the man who said these things in the position to elevate this to a new norm.  I am beyond confused.

I am of the generation that remembers when we sent brothers and fathers and sons and husbands to battle Fascism.  I remember when the swaztika was feared and hated, not painted in our public places.  I remember when we grieved over the assassination of a president.  I remember when families were torn apart over differences of political belief.  I remember the Chicago Seven, and Kent State.  I remember a time when the support of a Russian dictator would have sent chills up one's spine.  I remember a president forced to resign for political shenanigans that seem like child's play compared to what has transpired over this past campaign.

Now, these new demonstrations.  Again, anger and fear and frustration unleashed.  And the very people who were so willing to overlook the constant and inappropriate display of anger these past months, even rationalized it as understandable (or applauded it), are now upset with this reaction. I can only imagine what they would have done had their candidate lost.  

I am not condoning either.  But I am also appalled by the hypocrisy.  People who are now asking me and others to suck it up and respect the office of the president are among those who blatantly disrespected it when this sitting president occupied it.  I am appalled by the hypocrisy.  Or is it merely that hypocrisy is another new norm that we are being asked to accept.

I recognize that people with whom my distress will register are most likely singing the same tune.  Others may dismiss my and others' distress as mere whining and being poor losers. To these folks I would say, I am indeed a poor loser.  But not because a Republican won. What I fear is that what we are losing is the underlying belief that we are and should be a decent and responsible people.  That we see education as the gateway to opportunity, that we value hard work and welcome the "tired, the poor, the huddled masses yearning to be free."  

In his commentary in the New York Times on Wednesday, David Brooks said it much better than I can..."This campaign has been an education in how societies come apart.  The Trump campaign has been like a flash flood that sweeps away the topsoil and both reveals and widens the chasms, crevices and cracks below."  And the man who led the attack now will sit in the White House.

I can only hope that "this too shall pass."  That the silver lining in these clouds is that a new commitment to a caring and compassionate country is also coalescing. I am sorry that my only contribution will be in writing and in encouraging others who will take, and  already are taking, up the fight to protect the gains we have made in the past.  I have other priorities that, as my sister wisely reminded me, must occupy my mind and heart, my energy and commitments.  Best wishes to all of us.