Thursday, April 20, 2017

Going in Style

"Cinema is entertainment and people go to the movies because they want to feel good and forget about everything."
~ Vincent Cassel

I'm pretty sure not everyone would agree with Vincent Cassel.  Do you?  Many movie producers must not, given the plethora of movies that could not possibly leave people feeling good.  This is a point of view about movies that my dad had, and truthfully, so do I. So I was surprised to find that the French actor, Vincent Cassel, who I thought was probably of my generation, was born in the 60's, just a couple years before Midnight Cowboy arrived on the scene in l969.  R rated, gritty and certainly not a feel good movie, Midnight Cowboy won the Academy Award that year and ushered in a more realistic approach to movie making.  An approach that left my dad, and I suspect others of his generation, wondering how Abbott and Costello, Gene Kelly and Fred Astaire, Crosby and Hope could suddenly go out of vogue. In the years that followed, I think the only movie he went to see in the theater was The Sound of Music.  All other movies he and Mom saw were rented and probably not produced later than 1950, the exception being Philadelphia, but that's a story for another time.

I was raised on musicals, comedies and film noir.  Every Christmas we watched White Christmas, The March of the Wooden Soldiers, and the black and white version of A Christmas Carol with Alistair Sims.  Not surprising, when I battled breast cancer, I turned to old Fred Astaire and Gene Kelly musicals, the Crosby and Hope Road movies, and anything with the classic female actresses of the 40's, to help me forget. Movie marathons, especially during the weeks of chemo when I could barely lift my head off the pillow.  More than once, I thanked heaven for TNT and the other channels that show the oldies but goodies.  Not that I don't count Schindler's List, The Color Purple, and Philadelphia among my favorite all time movies, but the last thing I wanted when I was sick and frightened was another heavy dose of reality. 

Why am I giving all this background?  Because I am about to praise a movie John and I saw this past weekend and if you do not share the opinion that a good movie is one that leaves you feeling good, and forgetting about everything else, at least for those 120 minutes or so that you stare at the screen, then this endorsement won't mean much.

The movie - Going in Style.  The cast, Michael Caine who plays Joe Harding, Morgan Freeman who plays Willie Davis, and Alan Arkin who plays Albert Garner.  Caine and Freeman are now in their early 80's, Arkin is 79 - the perfect casting for a tale of three old friends who had worked together for the same company for 40 years, live across from one another, and share most evenings watching TV.  When they learn that the pension each needs for basic survival is being raided to pay off company debts, and the bank that will help restructure the debt is foreclosing on Joe's mortgage, they decide to rob the bank.  Just enough to cover their pensions and save Joe's house.  The rest to go to charities.

You can go on-line and read more about the plot, and check out the reviews.  I'm glad I did after I saw the movie, because the reviews, probably written by folks 20 to 30 years younger than I am, were lukewarm.  While the reviewers unanimously applauded the  skill and experience of the cast, many called the plot formulaic and for the most part, predictable. And, I would admit, it was, with one exception.  

But I, for one,  appreciated the presentation of these aging characters, who still feel strong emotions, think significant thoughts, and can strategize to solve a problem.  Joe and Willy and Al are far from the stereotypical image of elderly who need walkers and hearing aids, sit around commiserating on their aches and pains, and count on the largess of the young.  Although, they do face other challenges of aging that usually are not given much big screen time, like taking care of family in their old age and wondering if they will have enough money for another ten or fifteen years, they are charming, and occasionally funny enough to evoke laugh out loud guffaws.  Above all, they are still vital, still relevant.   And it was such a joy to watch these veteran actors demonstrate their craft, so well that one would wonder if the on-screen camaraderie could possibly be just an act.

So, last Saturday, John and I sat in a darkened theater and watched three of our favorite actors do their thing and do it so well that for 1 hour and 36 minutes we forgot that we are fighting for his life, that he had a tough week, or that North Korea is threatening to bomb us. We laughed out loud now and then, held hands in the darkness as we first did over 30 years ago, and walked out of the theater feeling better than when we walked in.  That may not be enough for sophisticated movie reviewers, but for us, this why we go to the cinema.

If you give this film a shot, I'd love to know your reaction.

Wednesday, April 12, 2017

Thank You, I Needed That

"Perseverance is failing 19 times and succeeding the 20th."
~ Julie Andrews

This past weekend, I watched the Masters Golf Tournament with John.  I'm not a golfer, not even a sports enthusiast, but I enjoy watching golf.  And I think John enjoys having me watch with him.  That's a good thing, because as our world becomes smaller and smaller, and we are with each other almost 24/7, finding things we enjoy together has become more imperative.  

I'm enjoying learning more about golf, about the nuances of the sport, its rich history and protocols, the various tournaments and courses, and above all, the golfers.  Perhaps, its the legacy of growing up with Arnie and Jack, their ups and downs, their families, their charities, watching them age along with us. Perhaps its the relative absence of scandal and notoriety in the sport.  (I did say relative absence.)  And the presence of families, in some cases generations of families.  This sport speaks to my values as well as my history.

I now root for a couple youngsters - Ricky Fowler and Jason Day - and am particularly fond of the Spanish veteran, Sergio Garcia, who has had the reputation of being the best golfer who has never won a major PGA tournament.  So Sunday found me cheering for him, hoping against hope that he would finally win his first major, and not just any tournament, but the revered Masters, the tournament that has plagued him for the 19, yes, 19 years, in which he has competed.  "I hope he wins.  Please let him win.  Come on Sergio.  You can do it, Sergio."

And he did.  He played his way into the lead, was overtaken, fought back to a tie, and finally won by two strokes in the playoff.  And the crowd roared - Sergio, Sergio, Sergio. 

In the days since his victory, I've considered why I like him, I'd even say that I admire him. Why did I become so invested in his win?  Why did I take such pleasure in his joy and celebration?  (And I did. You would have thought I knew him personally, that he was my kid brother or nephew.)

The obvious answer is that I often cheer for the underdog, but in this case it is more than that, much more.  I admire his perseverance, his tenacity.  Nineteen years and he plays with the same competitive passion as he did the first year I watched him.  I respect the respect he shows for his mentors.  Proteges often forget those who taught, and supported, and encouraged.  He never does.  I applaud his loyalty - his coach is his father, always has been.  Even when Sergio grew discouraged and almost quit the sport, he never abandoned his dad, just worked harder.  And what he apparently worked on was his mental game.  That may be what I admire the most.  That he looked inward, and grew not just as a golfer, but a man.  Perseverance, respect, loyalty, hard work, personal responsibility. 

In this day when the news is filled with dysfunction and greed, venom and vitriol, murder and mayhem, it was such a joy to watch someone achieve his dream because he is talented and diligent. To hear him graciously, sincerely acknowledge his family and mentors.  To see his joy and gratitude.  To see the respect shown between the players and the crowds.  To listen to thoughtful, nuanced commentary.  To celebrate.  To be reminded that this is still possible.

Saturday, April 1, 2017

A Gentle Reminder

This week, rather than a single quote, I offer a poem.  It was just the reminder I needed while waiting in Houston, struggling to stay positive while I feared the worst.  If it speaks to you, too, you might find the book from which it was reprinted worth a read - The Last Gift of Time by Carolyn Heilbrun.  The poem, "Otherwise",  was written by poet Jane Kenyon

I got out of bed
on two strong legs.
It might have been
otherwise.  I ate
cereal, sweet
milk, ripe, flawless 
peach.  It might
have been otherwise.
I took a dog uphill
to the birch wood.
All morning I did
the work I love.

At noon, I lay down
with my mate.  It might
have been otherwise.
We ate dinner together
at a table with silver 
candlesticks.   It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

But not today.

Saturday, March 25, 2017

As Good As It Gets

"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so let us all be thankful."
~ Buddha

We returned last night from John's six month checkup at MD Anderson in Houston, on the brink of being too tired to go to sleep, on a high from having had better news than we had feared we might receive.  

It was a quick turn-around trip, there and home again in three days. It requires a shuttle drive of a couple hours to Vegas, using a wheelchair to navigate the airport, a three hour flight to Houston, another wheelchair, and then a long taxi ride to the hotel, a stressful trip under any conditions, anxiety laden under present conditions.  Prior to the trip, John had experienced a sudden drop in his white blood cell count and I had read that such a drop could indicate progression in the disease, even indicate the onset of leukemia.  

John was to receive a bone marrow biopsy to determine how well his current chemotherapy plan has been working and whether he would need a more aggressive chemo as suggested by his St. George hematologist, a treatment plan that would require stronger medication that carries possible serious side effects.  Treatment we were hoping to avoid, nevertheless treatment we feared we might be returning to St. George to initiate.  

Following the biopsy, we were scheduled to meet with the hematologist who is consulting with us, Dr. K, a Russian-trained, rather austere, cool and contained woman who had been almost two hours late for our initial consultation in September, known for her tardiness, but thankfully also known for her expertise.  Thursday, she was on time, greeted us warmly, reassured us that John's blood work looked good, that the white blood cell drop was a minor glitch, and that she did not feel the aggressive chemo was necessary.  Just like that, in 20 minutes, the air in the balloons of our anxiety was released.

Relieved, we recognized that John was stronger this trip than our initial visit six months ago. We recognized that we had managed the trip with grace and competency.  We recounted, once again, how grateful we are to have access to this wonderful organization, to another fine doctor, to the collaboration our health care team is exhibiting, to having one another.

We learned a lot in that 20 minute consultation, not the least is that I should not be doing my own research.  I don't know enough to make distinctions about the information.  I don't have the necessary training to understand all the vocabulary.  I am too close to the situation to take in the information neutrally,  too quick to jump to the worst conclusions.  Almost as valuable a learning as what Dr. K shared with us.  Almost.

This is as good as it gets...and that's pretty good.  We are grateful.

Wednesday, March 22, 2017

A Work in Progress

"Routine, which I used to scorn as next door to incarceration, holds new appeal for me."
~ Carolyn G. Heilbrun
The Last Gift of Time

First, before I go any further, a few words as to my short hiatus from posting.  Given John's illness, I want to reassure anyone following the blog for some time now, we are fine.  Just have been busy fending off the imps of technology.  First, the printer, then the computer, and even my Kindle acted up.  But, and I say this with some pride, I handled it all and did so with patience, a modicum of grace, and success. (And yes, with the help of some patient, competent technicians.)  Not bad for someone who not long ago was afraid that I would break the computer if I hit the wrong key.

Now, for the Heilbrun quote.  I've been reading The Last Gift of Time for a few days now - one of my new habits, reading inspirational material as part of my morning routine.  Among the many sentences that caught my attention for its clarity and significance, this one captured an awareness I have had for some time now, but could not express with such eloquence or brevity.  

Like Heilbrun, I have a long history of resisting routine, seeing it as impeding my sense of freedom.  Lacking creativity and spontaneity, "next door to incarceration."  A psychologist might suggest this was a normal reaction to being raised by strict disciplinarians and taught by even stricter Catholic nuns.  I told myself that I needed more choice. I loved the individualized teaching methods of the 70's and 80's, no fixed curriculum for me.  And when I led my own training courses, I took pains to be sure no one course ever looked like another.  I could redecorate every month and have had to work, really work, at not starting yet another project, pursuing another hobby.

Upon retiring, however, habits and routines  took on a new meaning. The most obvious reason I began to concentrate on developing habits was to compensate for my " normal aging brain," as my doctor labeled it.  You know - where did I put my keys? What's her name, what's that word?  Why did I come into this room?  Surprisingly, it didn't take very long, well longer than 21 days, to recognize that habits and routines could actually increase my sense of freedom rather than confine it.  Freedom from worry and anxiety, freedom from stress, freedom to put my attention on something other than retrieval.  

So, I started with the obvious, the same place for my keys and sunglasses.  Grouping items by function and always, always returning them to their home.  Making lists and checking them twice.  Keeping one master calendar.  Developing schedules to address my needs rather than someone else's.  The behaviors organized, disciplined folks develop at a much younger age.

Last fall, when John was diagnosed and our lives took on chemo treatments, doctors' visits, medications, a state of hyper vigilance, these habits sustained me even as new habits and routines were demanded.  Sterilizing surfaces and materials often, communicating with friends and family more consistently, checking for potential obstacles, asking for help, etc., John's physical health and my mental health depend on them. They keep us grounded and provide a sense of stability and normalcy when any day can present a new and unexpected challenge.  They keep me tethered to today rather than floating away in sea of future uncertainty.  A computer glitch is just that, a glitch, not the cause of a meltdown.

Have I become a creature of habit?  Hardly.  Not after decades of denial and outright resistance.  But I can see the fruits of my labor.  I can feel the shift in my thinking.  Do I wish I had learned this sooner, well, maybe.  For now, let's just say I'm a work in progress.

Saturday, March 4, 2017


"the most wasted of all days is one without laughter"
~ ee cummings

As someone who can be too serious and thus, tend to worry and fret, laughter, even a simple smile, is a lifeline to a modicum of serenity.  Especially these days in this world with the health challenges we are facing. Laughter brings me back to center.  It reminds me to be grateful for what I have.  Who I have in my life.

I thank my lucky stars that I married a man who values humor and sends me laugh out loud e-mails almost every day.  And I thank my lucky stars that I have friends who share silly FB posts that always bring a smile if not an outright belly laugh.  (Pat, that's for you!) I'm so grateful for the late night comics who can find or create humor from a situation that otherwise stirs up angst and anger.  And special thanks to all my friends and my brother and sister who, when we speak, manage to get me to laugh at something, anything.  My days would be darker without all of you.

So, I conclude this brief post with one man's witty observations on aging.  Hope you get a laugh or two, or at least an occasional smile.

Wednesday, February 22, 2017

Just Another Candle

"Age is a case of mind over matter.  If you don't mind, it doesn't matter."
~ Satchel Paige 

I recently turned 76, and, somewhat surprisingly, the number took my breath away.  It's not that I didn't know it was coming.  I usually look forward to celebrating my birthday for an entire week. I'd been saying for some time that  I was going to be 76.  Yet, when the day came and I said the words, "I'm 76", it suddenly struck me that I'm on the downward slope to 80.  And however, you look at it, 80 is old.

Most of the time I don't feel old.  I don't think of myself as old, unless, until -
  • I know all the words to songs younger folks have never heard of.  Happens all too frequently on The Voice.
  • I catch a glimpse of myself in a store window and wonder who that woman is.
  • Or look unexpectedly in the mirror and see my mother staring back at me.
  • I have to struggle to get up if my butt is lower than my knees.
  • I walk into a room and can't remember why I went there.
  • I see a celebrity from my youth and am shocked at how old they look.
  • I can recognize all the gadgets and appliances on a quiz about golden oldies - skate keys, ice boxes, party lines, even mimeograph machines.
  • I hear myself saying I could be someone's grandmother.
  • I notice that none of the heels in my closet are over 1" high and I dress for comfort rather than style.
  • I refer to someone in their 50's as young.
  • I have to say I'm 1/2 inch shorter on my new driver's license. (At this rate, I'll need a car seat if I make it to 90 and am still driving!
  • The news arrives that the last of my Dad's siblings has died.
  • I watch a contemporary decline.
For the most part, however, I don't mind.  After the initial shock a few days ago, I did celebrate.  All week.  I celebrate that I take no meds.  I can do much of what I did 20 years ago, though I must confess it takes longer.  I love to learn and strive to learn something new every day, deriving more from what I read than I ever did.  I am overcoming my fear of this technology, even have a FB page.  I enjoy people of all ages and particularly enjoy conversations with young people.  Though I may cry more easily, I also laugh more easily.   Though I get angry and fearful, I don't reside there as long as I did when I was young. Though John is ill, we have great medical care.  And we continue to fight the good fight together.  Not bad for 76, if I do say so.

So,I agree with Satchel.  Age is a case of mind over matter.  If you don't mind, it doesn't matter.  The secret is to continue to not mind.  It is after all, just another candle.

Sunday, February 12, 2017

Breathing Space

"My desire to be informed is currently in conflict with my desire to not have my head explode or spend all day sobbing in the fetal position."
~  Christine Organ

While I haven't spent a day sobbing in the fetal position, I have been fighting a bug all week - a sure sign that I have been spending  too much time on Facebook, and too much time listening to what is loosely called news these days.  Too much time distressed by the steady stream of innuendos and accusations, and checking to sort the truth from the distortions and outright lies.  Too much time blocking the steady stream of anger and venom spewed from supporters and dissenters alike.   Too much time appalled by the cursing, name-calling, and personal attacks from all quarters. Too much time struggling to maintain some sense of hope that our system of checks and balances with be sufficient to curtail an agenda and its proponents that I find disheartening, to say the least.  Too much time fending off my fear that it may not be.  And that I will be left alone in a world I do not like.

However, if I've learned anything about illness these past few years, it's that it is a great opportunity to reassess and renew.  So, after a brief period of chastising myself for not putting tighter boundaries around this circus, and feeling just a bit sorry for myself, I stepped back and reassessed and renewed.  I watched only mysteries and ice skating on TV (and Family Feud with John), ate my favorite comfort foods, stayed in my nightgown and robe all day, and napped whenever I felt like it.  After all, I am retired.  Finished three novels, reviewed last year's journals and found my way back to a couple hobbies.  Had a few telephone conversations with old friends,  catching myself when we strayed too long into politics.  Even managed to catch up on laundry and create another donation for Catholic Charities.  I did check Facebook daily,  still responded to surveys, added my name to a few petitions, even made a couple calls to my elected representatives.  But I timed myself and put tight boundaries around what I read and what I responded to. 

In the process, I discovered, well, rediscovered that it isn't an either/or choice between staying informed or staying healthy.  It is a matter of choosing how to stay informed so that I can remain healthy, not only physically, but emotionally and mentally. It requires, for me at least, choosing carefully where, when, and how I get accurate information.  It requires boundaries around how much time I spend doing so, and to which voices I listen. It requires that I focus on my priorities - John's health and my health.  It requires periods of rest and recreation, breathing space.

This morning, finally feeling better physically, intent on finishing this post, I checked my e-mail and found a message from a special friend - that friend who though miles away seems to sense just what to say when I most need it.  She shared some words of wisdom from Michael Moore that put my thinking of this past week into crystal clear perspective. 

"This morning I have been pondering a nearly forgotten lesson I learned in high school music. Sometimes in band or choir, music requires players or singers to hold a note longer than they actually can hold a note. In those cases, we were taught to mindfully stagger when we took a breath so the sound appeared uninterrupted. Everyone got to breathe, and the music stayed strong and vibrant. Yesterday, I read an article that suggested the administration's litany of bad executive orders (more expected on LGBTQ next week) is a way of giving us "protest fatigue" - we will literally lose our will to continue the fight in the face of the onslaught of negative action. Let's remember MUSIC. Take a breath. The rest of the chorus will sing. The rest of the band will play. Rejoin so others can breathe. Together, we can sustain a very long, beautiful song for a very, very long time. You don’t have to do it all, but you must add your voice to the song. With special love to all the musicians and music teachers in my life."

Although this is a decidedly political statement, it speaks to me in other ways, for the challenges John and I face together.  I need to remember take a breath now and then.  To let the wonderful chorus around me sustain the note.  It may take awhile, but I will rejoin them when I can.

PS.  A special thanks to everyone who reminded me on my 76th birthday yesterday of just how wonderful my chorus is.  You made my day!!

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!