Looking for the Silver Lining

For as long as I can remember, song lyrics have popped into my head at the strangest times - a chance remark, a memory, someone's story, or even for no apparent reason.  I'm used to it.  Have come to just let it be when it happens, and trust that if there is a meaning or reason for its appearance, eventually I will make the connection.

Given both the current political climate and our personal challenges, it hasn't surprised me, therefore, that "Look for the Silver Lining" would be echoing in my head for days now.  "Look for the Silver Lining", for folks who haven't heard of the song, was introduced to the world in 1920, made popular by Judy Garland in 1945 and revisited most recently by Tony Bennett in 2015. And though many people may not know the tune or lyrics (which I include later in this post), the exhortation to "look for the silver lining" has become a common phrase used to support people through trying times. 


So, I've taken time to look for the silver lining in John's illness.  Clearly, we would much prefer not to be fighting cancer yet one more time, not to be facing something currently incurable, hoping that a breakthrough will occur, will be offered the next time we see the doctor.  We would much prefer that John have the energy and stamina he used to have. We would prefer he not need regular blood transfusions and chemo.  But having said that, there are other very real, very special side effects that we might never experience without this challenge, and that's the silver lining.  

Of course, there is the obvious - we are more present in the moment, more conscious of how we speak to each other, how we spend our time, the choices we are making and need to make.  As we have been through other crises, yet seem to forget once the crisis is past. We are also more affectionate, more intimate.  More so than we have ever been.  With little gestures, and at odd little moments.  More appreciative of the life we have had together, the homes, the friends, the memories.  We enjoy the little things, the simplest things, like laughing at Paul Harvey's antics on Family Feud, or deciding which judge a contestant should choose on The Voice, and are conscious, in the moment, of our enjoyment.  Then there are the everyday things too easily taken for granted, like the desert sunset or a glass of B and B after supper, the call or e-mail asking how we are doing, the thoughtfulness of the service people who have taken up the slack for us, a favor we do for each other without being asked.

I'm sure there are others who have learned to live their lives this way without incurring a disease or experiencing a disaster.  I'd like to think we might have evolved this level of consciousness and appreciation over time, but I'm not sure that we might just as well drifted along, most days only semi-conscious.  I also am aware that some people never see the silver lining, never look.  For us, this is the paradox, the contradiction, the both/and.  We are fighting for John's life and we are blessed.

Look for the Silver Lining

                            

Look for the silver lining

Whenever a cloud appears in the blue

Remember somewhere the sun is shining

And so the right thing to do is make it shine for you

A heart full of joy and gladness

Will always banish sadness and strife

So always look for the silver lining

And try to find the sunny side of life

This Much I Have Learned

"In the middle of every difficulty lies opportunity."

~ Albert Einstein

 I have kept a personal journal for 40 years now, my own unedited, politically incorrect, safe confessional.  I  periodically have gone back to review a volume or two, sometimes out of mere curiosity, sometimes - as this past week - because I want to see if/what I have learned. Not surprising I'm sure that I would start with the most recent volume whose first entry was Sept. 1, three days before the ER visit that led to John's dire diagnosis.  

This much I have learned - in no order of importance -

• that Einstein was so right.  This challenge is the opportunity for many things.  Like learning.  I know more today than three months ago.  I know more about his disease. I know more about John.  I know more about myself.  I know more than I want to know about navigating the health care system, even a good one. 
• that even though John and I have battled cancer twice before, I did not appreciate or respect his courage and resiliency as much as I do today.  He is my hero.
• that just because we fought this fight before, we have had to acquire new knowledge, new skills, new attitudes for this particular battle.
• that the most important role of caregiving may be that of advocacy with the individuals and institutions on whom your loved one's survival depends.  And that that role calls for skill, patience, tenacity and above all, fearlessness.
• that I am a great advocate! 
• that support and help can come in the most creative ways, from the least expected quarters, and take your breath away.
• that we have an incredible network of support here.  And that knowing that has removed a source of worry for John.  He knows I would not be alone.
• that the very differences between John and me that have at times been the source of disagreements and stress, harnessed, are the source of our strength, resiliency and endurance.
• that one of the biggest challenges for me is to stay present and not leap into an unknown, frightening future.  And developing that skill, though difficult, may be the biggest opportunity for me, the one that will impact the very future I worry about.
• that I need to take care of me as well as John.  I sometimes do a better job at the latter than the former.
• that it takes constant conscious attention to maintain a healthy tension between realism and optimism.  And between enjoying the present and planning for a future we may not want.
• that this time is bittersweet.  The bitter - his frequent need for transfusions; the reality that this is currently incurable; watching him give up so many things he enjoys; observing his fatigue; the vigilance needed to prevent infection, etc., etc.  The sweet - deeper communication; greater and more frequent expression of affection and respect, not only between us but for us; a stronger partnership than we've ever had, etc., etc.  And that the sweet does not negate the bitter, nor vice versa. 
• that a sense of humor is more valuable than I ever realized.  Thank heaven John has a good one.
• that simplifying our environment and our routines isn't about losing anything.  It's about gaining time and space, calm and serenity.
• that, while others can and will give you advice, everyone handles a crisis like this in his or her own way.  And what may work for you one day may not the very next.
• that I have a whole new respect for the chronically ill and their caregivers.
• and that, though I have learned a lot, I know I have so much more to learn.

Last September I decided to share our journey here in the hope that what we are experiencing and learning along the way could be of value to others who are or will be in a similar situation.  I hope this is so.  And to all who are following this and perhaps sharing it with others, thank you.  And Happy Holidays to all.

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.

Caring for the Caregiver

"Secure your own face mask first before helping others."~ Airline Safety Instructions

Another week of daily lessons.  This week, John's second chemo series, was more challenging than the week of his first series.  He has developed plantar's fasciitis, so experienced unexpected foot pain.  He's had a few bouts of nausea and also required two transfusions, his first since leaving Houston.  Last Friday evening, we faced our first fever, mild, yet a concern.  Fortunately, we had a doctor's appointment earlier that day when we reviewed the warning signs (a fever of only 100.4) and had an emergency number for assistance, which we ultimately consulted.A more challenging week for both of us, during which I had plenty of opportunity to observe my caregiving m.o.  I research first, get all the information I can, evaluate my options, go into action and then deal with the emotional and physical fallout later.  Pretty effective in the moment, but not so hot in the long run.  Adequate for our time in Houston eleven years ago with professional assistance nearby 24/7.   But, I clearly recognize, calling for some serious tweaking for this challenge.Ultimately, I believe the caregiver has to take responsibility for caring for herself or himself.  That can mean, among other things, setting responsible boundaries, managing  stress levels, learning to ask for help, or in my case taking better care of my own health.  So, for the first time in a long time, I'm exercising regularly - light weights, and exercises to improve my balance to start with.  I'm drinking more water than ever before and limiting sugar and salt.  This may not seem like a lot to a true health aficionado, but it's a start.  And for those of you who know me well, who know how much I can live in my head, for me this is a lot!  Next step, Tai Chi!It's not that I believe I have to do it all. I know I am one blessed caregiver.  I have a breadth and depth of support that continues to touch me every day with an outpouring of care and compassion.  From e-mails and telephone calls, cards and photos, unexpected gifts and offers of service, I am reminded how important and valuable a network of support is, especially in times of crisis. These wonderful people have buoyed me up emotionally and physically. Have let both of us know we are not alone. I am not reluctant to ask them for help. But they cannot be with us every moment of every day. They cannot make the decisions I need to make to take better care of myself so that I can take better care of John.  They cannot change my behavior.

  

One Day at a Time

"It is not the strongest of the species, nor the most intelligent that survives.  It is the one that is most adaptable to change."

~ Charles Darwin

I have thought of myself as a survivor for some time now, secure in my knowledge, skills, and attitudes toward change.  I studied the work of William Bridges, an 'expert' on the topic of transition, and worked for years with organizations and individuals in the midst of change, as a corporate trainer and executive coach.  And heaven knows, I've had plenty of opportunity to practice what I preached. 

So, when some folks said, "You can handle this, you've done it before", I said thanks and set out to 'handle' it. I researched, made lists, put out the word, tossed inappropriate food, resigned from large group obligations, made more lists, cleaned and sterilized, gathered low salt and low sugar recipes - (and I don't even enjoy cooking), made yet more lists, etc., etc. The little engine that could.

This engine came to a screeching halt one morning this past week as I caught myself writing in my personal journal, overwhelmed, "I can't keep up with this pace.  I'll get sick and then what!!"   

It took that pause to recognize that I haven't done THIS before.  The last time John was ill, we lived near the hospital in Houston for 3 1/2 months. When he was in most danger, he received 24/7 care from professionals - for weeks on end.  I stayed in a hotel room not far from him where the suite was cleaned, by someone else, every day. We were never told his cancer was incurable. And we were 11 years younger.

I realized that morning that we are being called on to adapt our thinking, our attitudes, and our behavior almost daily, sometimes hourly.  Each new piece of information - from our research, from friends and family, from our health care team, and most importantly, from our bodies and behavior - can call for a new decision.  I took a deep breath and began to consider ways to be more gracefully and consciously adaptable every day.  One day at a time.

So, today, I'm still in my nightshirt.  I've found a good new mystery to read after catching up with some favorite TV shows.  John is enjoying his respite from chemo and is engrossed in a sportscast marathon.  The lists will wait until tomorrow.

Out of Crisis Comes...

"Often out of crisis comes this enormous wellspring of generosity and motivation."  

~ Josh Fox

We know from past experience the truth of this quote.  I retain many of the 100+ angels that were sent to me when I had cancer.  Although I am a confirmed agnostic, I do believe that the prayers offered when John battled Non-Hodgkin's Lymphoma, contributed to his survival, if nothing else, because he knew he was being supported, even by people he did not know.  And that contributed to his will to survive, in spite of a poor prognosis.

Even with our past experiences, we are profoundly touched by the outpouring of concern and offers of assistance we are receiving from across the country.  Many have asked what they can do to help.  I know there is plenty of advice out there that you should just do what you can because people in the midst of crisis often don't know what they need.  We certainly don't know the extent of what we might need yet.  

Some folks have gone through a challenge of their own and have a sense of what might be helpful.  A card from old friends who had heard our news through the grapevine came unexpectedly and that was touching.  Several friends have sent well wishes and prayers - always welcome.  A friend and a family member who have special medical expertise continue to provide translation of medical terms, insight into possible treatment, and research into other options.  Another who knows me well, knows how I tend to think and react, is a good sounding board as I contemplate important decisions.   Sometimes, a simple offer...like "what would make the day easier today and can I get or do that for you", as one dear friend recently queried, may be the sweetest gesture in and of itself, needing no response other than thank you for the offer.  And anything that brings a smile, or better yet a laugh, is a treasure.

But it is more than fine with us that you offer and then wait for our requests.  We are leaving tomorrow for MD Anderson in Houston. We will make more specific requests once we have more information.  For now, your prayers, moral support, positive thoughts and wishes are deeply appreciated.

I Am Not a Luddite!

"I hate to say it, but I come from an era when we weren't consumed by technology and television."

~Jimmy Buffett

I come from the same generation and don't hate to say it. Having recently returned from a trip to Santa Barbara, my first flight in almost two years, I saw signs of folks consumed by technology, glued to cell phones and computers, rarely noticing their surroundings whether sitting in the airport, walking down the street,  even across from tables in restaurants.  To a degree that I found confusing and disconcerting. So much so that my reactions have remained with me since my return, hovering like an incipient headache.  

Before I share my observations and my concerns, a disclaimer.  As a member of one of the last generations to remember ice boxes, party lines, and wringer washing machines, the humid heat of Midwestern summers before air conditioning and hanging clothes in the basement in the winter, I  appreciate the modern conveniences that technology has produced. I wax lyrical over small appliances - love my Keurig coffee maker, thank the inventor of the electric can opener- and there must surely be a place in heaven for the creators of the microwave.  I have a cell phone, enjoy my Kindle, e-mail, Skype and use Facebook.  In short, I am not a Luddite.

I am, however, also not a techie, nor do I desire to become one.  Because as a member of my generation,I also remember the joy of receiving a handwritten letter and the pleasure of long conversations with a friend.  I had fewer friends, but I knew them, had a shared history.   I listened to the radio, played board games, pursued hobbies. The family doctor came to my home and didn't push prescriptive drugs.  I didn't have to ask people to put their phones away or look at me when I talked to them.  The bullies on our playgrounds had faces and names.  Information came into my world at a pace I could digest, understand and discuss in depth.

So, I would rather discuss a problem in person or over the phone, (a land line preferably); I will not bring my cell phone to a meal and don't instant message.  I journal my most private thoughts in a  notebook using a ballpoint pen.  I tape tv programs so I can eliminate the constant barrage of commercials suggesting I may need a new drug that I suspect will be recalled within a couple years for its side effects.  Increasingly, I choose to listen to music or read a book, a real book, or pursue a hobby. 

It can be argued that my generation doesn't need all the networking technology or that because we're retired, we have the time to write letters, have long conversations.  Or, as too often is the accusation, that we are afraid of the technology or too old to learn new tricks.  I maintain that some of us are making conscious choices, to communicate deeply, to take charge of how we spend time, to curtail the distractions, to control technology rather than let it control us.  

We don't need to defend this choice.  Or apologize.  Indeed, we may be one of the last generations to understand it is a choice.

  

Staying Sane in an Insane World

"We have met the enemy and he is us."

~ Pogo

Although Pogo uttered these words in l970 as a commentary on environmental concerns, almost 20 years ago, I woke with these words tumbling in my head during the early hours after news of the Dallas killings.  For, the issue of terrorism aside (not to discount it, but to stop focusing on it for awhile) we seem to be doing an effective job of attacking ourselves from within.  And from my vantage point, as an aging moderate committed to developing and applying critical thinking skills to my own thinking and to what I hear and see coming from others, I am more concerned about what we are doing to each other than what some terrorist might do to me.

Today, I ask that you consider what I am observing and if you do, too. let me know. Let me know how else and what else you think.  Let's start an on-line conversation that leads to something better in our communities  Invite others to discuss these issues, not just lament or defend, but discuss.  We need to talk, to think together.  Or we will surely end up in the direction we are headed.

This is some of what I see, too often, contributing to the distrust, anger, fear, polarity and ultimately to the growing proclivity for violence:

• Either/or - in its many permutations, right/wrong, good/bad; all/nothing; black/white. No room for a third alternative nor even the possibility that both views could contain valid points,
• Gross generalizations - even if challenging it when aimed at oneself, an unwillingness to challenge it in one's own thinking.  Consider pro-police representatives who, rightly, say most police are to be respected and the few "bad apples" don't represent the majority who then say Black Lives Matter is a racist group because of the behavior of a few.  Or vice versa.  All (fill in the blank) are racist, stupid, naive, the enemy., etc., etc.
• Name-calling and labeling to a degree I can't recall since a youngster on the playground.  Or a teacher of elementary students.  Outrageous accusations, belittling, demeaning, crude labels.  The resurgence of pejorative terms in public discourse we thought we had eradicated.  When did their use become a badge of honesty? 
• Emotions used to justify behavior, rather than even considering the underlying thinking that fosters the emotions.
• A demand for rights while disregarding the rights of others. 
• A defense of one amendment to the exclusion of others.
• Belief trumping reason.  Assumptions unchecked by data.  
• The declaration of faith, better yet, the "right" faith as a test for decency or leadership, rather than character or experience.  As though no one of faith could be a liar nor anyone who doesn't proclaim a faith could be truthful.
• The constant search for one person to blame rather than consider shared responsibility.  Data and facts dismissed as irrelevant or the domain of elitist intellectuals.
• The demand for immediate, simple solutions to complex problems.
• A media that provides a platform for the above and too rarely challenges it.  
• News as entertainment.  If it weren't for local news, PBS and NPR, and an occasional Sunday or holiday program, we would rarely see positive stories, stories of true heroism and compassion on the airways.
• The explosion of social media that allows for outrageous, even fallacious things to be said and spread with full anonymity.  At least we knew who our bullies were.  And while stories can be checked for authenticity, I have to wonder what % of people who pass something on have checked it first.
• What feels at times as the marginalization of moderate voices, while demanding that moderate Muslim voices come forward.  When moderate voices do step up, what degree of media coverage do they receive?  What % of time did Gov. Kasich receive I wonder.
• Compromise too often perceived as losing; the critical thinking and communication skills required to bridge gaps not only not valued, but distrusted, demeaned and dismissed.  
• The alarming proliferation of guns.  Those of us who remember the 60's and the wrenching apart of families, communities and the nation can only wonder how much worse that would have been were there access to the weaponry on our streets today.
• A growing sense that we are like the frog, who in a pot of water that gradually gets hotter and hotter, remains until he is boiled, unaware that he can and should get out before it's too late.

I do know this is not true of everyone.  I talk to folks who are aware of these issues, some who try to present a question or distinction to challenge any of the above whenever and wherever they can in the hopes of at least interrupting  the escalation.  I see people across the spectrum of opinion who are trying to interject a voice of reason, to try to calm the alarming volatility.  I know whites are standing beside blacks in peaceful demonstration and blacks are shielding police.  It is what keeps me from hiding in my bedroom with a blanket over my head. 

It is also what has given me pause to consider what else I can do to speak out for a more civil discourse and a more collaborative effort to solve problems.  This is what I am doing and what I am committed to do.

• I challenge overgeneralizations when I hear them.
• I ask for evidence when I hear or receive information that feels questionable or especially incendiary. 
• I offer an alternative point of view when asked for an either/or opinion - and one of my favorite responses, is "it depends."
• I try to listen to another point of view thoroughly and acknowledge that I've heard it, before offering my own.  Admittedly, this is the hardest thing for me when I deeply disagree and especially, when I suspect or even have evidence that the other person will not grant me the same consideration.
• I am commenting more frequently on Facebook, something I thought I would never do.
• I am writing to my Congressional representatives to remind them that they are (or most often are not) representing my views and values.
• I am going to write to certain channels and moderators to support those who are calling out irresponsible, disrespectful behavior of interviewees and panel members and to let those who do not know why I will not watch them.  Turning off the TV may help my personal morale, but it doesn't let anyone else know why.  That could help my morale even more!
• I volunteer time and energy to two local non-profits that are making a difference in my community.
• I will be on the campus of our local university this fall to help register new voters.
• Above all, I listen to myself and examine my thinking.  I try to remain alert to my biases and prejudices and defenses.  And I apologize when I have forgotten.

And finally, I thank you for whatever you are doing to insert some sanity into this insane state of affairs, and to encourage those of you who feel it wouldn't make a difference anyway to reconsider.  I particularly encourage those of us who are retired, who have more time and memories of how dangerous this rage and irresponsibility can be to step up and let our voices be heard.