Sunday, January 29, 2017

If I Ruled the World...

"If I ruled the world,
Every man would be as free as a bird
Every voice would be a voice to be heard..."
~ Cyril Ornadel, Leslie Bricusse  

This has been a tough week.  I have watched with dismay as this President signs executive order after executive order that I disagree with.  I have serious concerns about his mental health and the agenda of many of the people he surrounds himself with.  I can't believe that the interference of a foreign government, let alone Russia, hasn't raised more of an outcry nationwide. I have watched demonstrations that remind me of the divisiveness of the 60's that tore apart our families and communities.  I fear our very democracy is being eroded before my eyes, fed by the beliefs of a small segment of our population with little regard for the needs or values of the larger whole, even blatant disregard.

I want to think "we are better than this."  But that belief is being tested almost everywhere I look.  When lies are called alternative facts and people brag about posting false stories, when basic Constitutional rights (freedom of speech, freedom of the press and freedom of assembly) are threatened, when I see resistance that looks as ugly as that which is being resisted, when I see and hear behavior I would have chastised a 10 year old for, I am at best stunned, at worst saddened and afraid.  So....

If I had my way -
  • we'd challenge our generalizations - not all Republicans support this president and his policies; not all Muslims are terrorists; not all Christians are Evangelical; not all Democrats are Progressives; not all Pro-Choice supporters advocate abortion; not all voters who didn't vote for him voted for her; not all who voted for him are racist, etc., etc.
  • we'd "seek to understand, then be understood" - whether in personal conversation or on social media, we'd ask more questions for clarity; consider at least a point, if not the entire perspective, that is being made; provide feedback for understanding (even if not in total agreement) before countering with our own points of view.  
  • we'd move beyond blame, especially overarching blame of a single group of people - there are many factors that contributed to the outcome of this election, many groups that can be pointed to for the roles they played or didn't play; we'd do well to remember that blame elicits more defensiveness than ownership.
  • we'd tamp down the flames of hatred rather than fan them -  name-calling, profanity, insult, ridicule and rudeness are running rampant; hatred is being justified by anger; respect is being demanded without being given; "argument turns too easily into animosity; disagreement escalates into dehumanization." (George W. Bush) 
  • we'd be as aware of our own biases, as much as we are the biases of others - President Bush said it beautifully in Dallas, "too often we judge other groups by their worst examples, but judge ourselves by our best intentions."  I also would add that too often we justify with single anecdotes rather than patterns of behavior, belief rather than fact.
  • we'd do our homework - we'd learn from history - ours and that of other countries, understand how easily populism morphs into Fascism, what trade wars can do to an economy, how easily the fabric of a society is torn apart and how long it takes to sew it back together again.  We would demand more than platitudes and slogans, proof and plans, not mere promises; personal character would be as much a criteria for success as wealth is.
  • we would be engaged citizens - we'd understand how our government is supposed to operate; we'd understand something about basic economic theory; have some knowledge about the rest of the world; at least we would vote...and rid ourselves of the gerrymandering that has contributed to the belief - and in many cases, the reality - that our vote doesn't matter.
But most of all, we'd look for ways to pull together, rather than divide further - we'd seek compromise, solutions that work for the largest segments of our population, not just a single segment or group.  Next month I will be 76.  Although I am concerned for my own future should this regime impact Medicare and Social Security and health care as they promise to, I am not going to be here in 15 to 20 years, maybe less than that.  But my nieces and nephews, my grand-nieces and grand-nephews will be.  If I had my way, they will enjoy the opportunities I did.  They will live in an environment of clean air and clean water.  They will feel safe to express their political views, to practice the religion of their choice, or no religion at all. 

I know I will never rule the world.  But at least, I can still hope "this is not who we are."

Monday, January 23, 2017

From the Ridiculous to the Sublime

"We are made of oppositions; we live between two poles....You don't reconcile the poles.  You just recognize them."
~ Orson Wells 

I woke Friday, dreading the day.  I still struggled with the reality that "he who would be king", as I have begun to refer to him, would be in the White House.  That so many people could overlook, condone, even applaud his fear mongering,  threats, adolescent petulance, sexist and racist behavior, and blatant lies has been - and remains - a source of dismay and distress. That he and his inner circle exhibit many of the characteristics of Fascism, and that so many Americans either don't appear to recognize this nor seem to care, I find alarming.   That I am being asked to wait and see, to give him a chance...for what?  For how long?

The morning sky did little to uplift my spirits.  Gunmetal gray overhead, a steady persistent rain that mirrored the darkness of my spirits.  John coughing and sneezing, courting yet another cold. I decided not to watch the event, knowing I would end up at best, muttering under my breath so as not to disturb John or openly spewing my frustration and anger at the TV; neither the image of the intelligent, wise woman I'd like to think I can be.

I managed somehow to get through that very long day keeping my frustration and pessimism at bay by staying occupied with household chores and hobbies.   I eventually fell asleep wondering how I would manage the coming months concerned for John, concerned for my country, and concerned for myself if left alone, an old woman, in a world that looks potentially unsafe and inhospitable.

Then, Saturday dawned, still dark, still gloomy, still rainy.  Fortunately, I had a meeting in the morning with a group of women I enjoy and trust, women as concerned as I am, women with whom I can express my concerns without being told to get over it or "give him a chance." Got in a little retail therapy and went home to catch news of the march in Washington. Would the resistance I've been hearing about and reading about on-line materialize into anything that neared the goal of a million women gathering?  Would anyone notice? Could it matter?  What if it went south and people were hurt?

I remained glued to the set as images of women and men and children marching in peaceful protest were gathered from across the country, from across the world.  I delighted in the diversity of cultures, was encouraged by the span of generations, surprised to see some of the cities represented, and entertained by the audacity and cleverness of some of the posters.  I watched as they flooded streets for mile upon mile.  Over 500,000 in D.C. in the midst of winter.  Hundreds of thousands marching in cities in red states.  In Europe and Africa.  Even a group in Antarctica.

But most of all, I could feel the tide of my pessimism and dread recede.  We are not as apathetic and cynical as I have feared.  It will not be that easy to manipulate and remove our civil liberties.  Perhaps, the best to come out of this morass is the awakening of engagement and participation.  Peaceful engagement.  Participation by people in the mainstream who have been lulled into complacency or cynicism.  People on the fringes who have come to believe that no one cares.  People who will be heard.

This morning, as I complete this, the rains have stopped.  The sun is shining.  The sky is filled with clouds.  He is still in the White House.  There is no balance of power in D. C.  But I know there are millions of people watching.  Millions of people speaking up.  Millions of people who do recognize what could too easily happen.  Perhaps some of them did not vote in November, but maybe, just maybe, they will vote it 2018.  This is something I will wait to see.

My deepest gratitude to all who marched.  You have restored my faith and hope.  No small accomplishment.


Thursday, January 12, 2017

A Little Rant

"...whatever you do you have to keep moving forward." 
~Martin Luther King Jr. 

A couple weeks ago, I blogged that the role of patient advocate calls for "skill, patience, tenacity and fearlessness." After yesterday, the seven hours John was in the hospital, I would add an adequate knowledge base, courage, a thick skin, support and the ability to regroup and try, try, again (is there a single word for that?)

Yesterday...John was scheduled for a bone marrow biopsy to provide information as to the efficacy of the chemo treatment he has been receiving.  Going into this procedure, we knew from the results of his blood work on Monday that his hemoglobin count was low and dropping; we could see the overt physical signs and indicating, from four months experience, the likelihood that another transfusion soon would be necessary was obvious. Going into this procedure, we were both, I believe, understandably anxious.  Trying to be responsibly proactive and to avoid more tests and procedures for John than necessary,  I requested help from our cancer clinic to arrange for a transfusion at the hospital while we were there, if so indicated.  I was assured that this could happen.  I also repeated my request Tuesday with the liaison for the hospital when she called to confirm appointment particulars, and once again was reassured that this could happen. Well, you know where this is going.  I was able to arrange for his blood to be typed (a step necessary for a transfusion) shortly after we arrived, but when the hemoglobin count came in indicating a further drop and the hospital physician contacted our hematologist for his authorization, he reported that he had been told not to provide the transfusion so we might see if his numbers improved- even though this count has compelled prior transfusions and has never improved without transfusion.  

This decision, I felt, would put John at further risk and possibly require a visit to the ER.  A visit we would endure, not the hematologist nor hospital personnel.So, I pressed on.  I called the clinic myself and expressed my concerns, knowing full well that I was being labeled as "upset" (which I was, both labeled and upset), probably over-reactive, and daring to challenge authority.   I asked for more information regarding the decision, the minimum I felt we were owed.  Bottom line, John received a transfusion.  And we left, seven hours after we arrived, exhausted.  And I am not done.  I will speak with our hematologist to clarify what happened and why.  I will provide feedback to the hospital that the attending nurse was amazing.  She helped whenever and wherever she could, more than others might have.  But, I will also convey that I wonder why I gave all that information to the hospital on Tuesday if it never filtered down to the appropriate department.  

I will provide feedback that I would hope the assistance I received was because John needed it, not because I was "upset" and needed to be appeased. I will convey that there is a cost to these breakdowns and they need to know the cost.  John would undoubtedly be in worse shape today had I not persisted.  I know that it adds to John's stress to see how hard I often have to work to get him the help he needs, even the help we are being promised...and anything that adds to the stress we already face, is, duh! at a minimum, upsetting.  An additional cost is we lose trust in the organizations we must be able to trust. To be clear, I know these things happen.  I suspect they will happen again, in another context, with other players. I see no malice of intent.  I appreciate the help I did receive.  Too often, these breakdowns are the consequences of  system issues - the lack of communication, guidelines that become law and hamper creative problem solving, cultural biases that discourage questioning or taking personal responsibility.  

But although I recognize the system issues and can appreciate the frustration those within the system may also experience, only they can improve the system.  I know I will deal with each occurrence as it happens. No doubt. I suspect this isn't the last time my upset will loom as the immediate problem.  No doubt.  I will strive to be as proactive as possible and continue to provide feedback that might be helpful, both positive and negative.  I will continue to be better informed so that I can ask effective questions, make effective requests.  As the expression goes, I can be like a dog with a bone.  Just wish it wasn't so demanding.  Just wonder how other caregivers, who may not have the skills, the tenacity, the energy and support, are making it? 

But I do feel better for this little rant!

Monday, January 2, 2017

Just for Today

"Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment."
~ Buddha

Just like that, another holiday season is over, officially over as of today.  Another year past. Decorations boxed and stored.  Journals from the past year reviewed.  Just like that.  Like so many holidays of the past.  Over in the blink of an eye.  And at the same time, so unlike other holiday seasons we have known together.  Far less frenetic.  Far more uncertain. 

I have been tempted to make a list of resolutions, create a list of specific goals, design a year of special events and special memories, as I have so many years in the past - anything to gain a semblance of control. Fortunately, I was reminded, by Dear Abby no less, that there is a simpler way, one that I believe will serve John and me much better this coming year.

On New Year's Day, the current Abby, the original's daughter, shared an often-requested list of resolutions that her mother adapted from the original credo of Al-Anon.  I prefer to think of them as guidelines or aspirations that can provide a framework for a simpler, more mindful year.  I offer my edited highlights, those that speak most to me, and a couple more that these have inspired.

"Just for Today:  I will live through This Day Only.  I will not brood about yesterday or obsess about tomorrow."

"Just for Today:  I will not dwell (my emphasis) on thoughts that depress (or worry, or frighten, or anger, or...) me."

"Just for Today:  I will accept what is.  I will face reality.  I will (strive to) correct those things I can correct and accept those I cannot."

"Just for Today:  I will improve my mind.  I will read something that requires effort, thought, and concentration."  Or inspiration.

"Just for Today:  I will do something to improve my health."

Just for Today:  I will do something that is creative and enjoyable.

Just for Today:  I will do something to simplify our home.

Just for Today:  I will do something with John that is fun.

If any of these guidelines speak to you also, I encourage you to read the original list in its totality.   And whether you create resolutions, or goals, or guidelines, or choose to let the year unfold as it will, may it be a healthy, happy one.