Just When I Think.....

"Future shock is the shattering stress and disorientation that we induce in individuals by subjecting them to too much change in too short a time. "
and
"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  

Typically, I would choose only one quote to launch a post, but these are not typical times. They are, in fact, the times that Alvin Toffler, the futurist, first described in 1970 in Future Shock, a future time of unprecedented change at an unprecedented acceleration. 

I was privileged to hear Toffler speak at a convention where he described the future of change not only in the United States but globally.   What I remember most vividly is the first question that was asked in the Q and A period following his presentation, and his response.  Question:  "When will this slow down?"  Response:  A smile and then, "I'm smiling because yours is the first question I always get and my reply is the one I always give, not in your lifetime."

I went back to Toffler after reading my personal journal entries from April and May and recognizing how much had changed in the outer world reported in the news and my inner world recorded in my journals in only these past two months.  After I could see how much I felt like a ping pong ball bouncing from player to player to player to player.  After seeing how I could vacillate between the throes of frustration, outrage, and self-doubt one day and the reassurance that my coping skills were more than adequate and then back again, sometimes within one day. Yup, stress and disorientation.

So, I have chosen to reflect on what I am learning, what I may have forgotten that could be helpful, and maybe most important, on evidence that I am learning from this.

• Just when I think I've recovered a modicum sense of equilibrium, something happens to throw me back into free fall.  I come across conflicting information or distressing national news, I forget or lose or break something, I learn of a friend with a serious health challenge.  Sometimes all within one day.  Change does seem to be happening at warp speed.
• Data and information are not enough.  I own the responsibility to seek out the appropriate experts and check the veracity of the information.  (Taking the medical advice of a politician is akin to asking my auto mechanic to clean my teeth!)  
• I need occasional breaks from outside information for my mental and emotional health.  I woke up yesterday to the news and images of protests springing up across the US, to some of the violence that was occurring, to the inflammatory responses being reported from people who could and should offer otherwise.  I could feel the sorrow and outrage bubbling up, so I chose to turn off the TV and clean a closet.
• Taking care of my mental and emotional health is as important as taking care of my physical health.
• An occasional escape from the harsh realities we can now see 24/7 in technicolor is respite rather than denial, healthy respite.
• I'm recognizing sooner the things I find stressful.  Too much negative news at one time.  Generalizations, attack, hatred, denial, although understandable, don't help in the long run.  Maybe at the moment, but not in the long run. Including, and especially, my own even if silently expressed.  Sharing worries and anger, frustrations, vitriol, and fears, although helpful for awhile, indulged too long only seem to exacerbate them.
• I'm also learning to recognize the signs of disorientation soon enough to reorganize - waking in the middle of the night and being unable to return to sleep, becoming clumsy or unusually forgetful, talking faster, feeling irritable or blue for no apparent reason, leaving simple tasks unfinished.  These are my signs.
• Three things help me adjust more gracefully to the next change - staying as conscious and present to the immediate moment, paying attention to what is positive and works for me (rather than worrying about what's "right" or what others think I should do) and looking for creative solutions to the problems I can control.  I'm far from mastering any of this.  I wish I were more agile, but I guess I'm a work in progress.
• It is more helpful to me to challenge my own thinking than the thinking of everyone else.  More satisfying, more possible, and more effective.
• I am more of an introvert than I ever would have suspected.  But I also need to connect with someone every day, and seeing that person, if only on Zoom or Skype, is a pleasure.  I love my little rescue dog, Rufus.  I find myself talking to him a lot, but beyond wagging his tail and rolling over on his belly to be scratched, he can't answer me.  He can't ask the question that helps me slow down my inner dialogue or evoke some laughter when I most need it.
• There is something exhilarating about solving my own problems.  You'd think I had conquered Mt. Kilamanjaro whenever I solve a computer issue on my own.
• Nevertheless, I am still learning when to ask for help.
• To quote Sheldon Kopp, "The world is not necessarily just.  Being good often does not pay off and there is no compensation for misfortune.  You have a responsibility to do your best nonetheless."
• Either/or thinking at best limits possibilities, at worst, it's creating havoc in our public life.  I am striving to remain vigilant when I fall into that trap. 
• It helps to focus on the possibilities inherent in all this change, as much as the breakdowns and problems that present themselves.  I appreciate my home more.  I relish my time with friends.  Having learned that I can weather the depths of my grief over John's passing, I know I can weather the grief of my current disappointment and disillusion in my country.  Eventually, if not now.  I have a much neater home and I'm even learning to enjoy cooking and playing around with technology.    
• The little things.  Thank heaven for a bumper crop of roses, a stranger who offers help, a breeze when it's hot and air conditioning (!), the desert sky at dusk, a friend who calls just to check in, a good piece of chocolate or a glass of homemade lemonade, a happy memory, the quote that helps me make sense of what I'm seeing or feeling or thinking, and always, my sweet little Rufus.  The little things that are always available, just waiting to be noticed and appreciated.  The little things that I am noticing and appreciating more than ever.

Well, I can at least take some comfort in knowing I can't be called illiterate!

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.

A Three-Legged Marathon

"We take the hill for a better view of the next hill and the gear we'll need to take it as well."

~ Pamela King

It's taken a few days of recuperation and this message from Pam to realize that, though our trip to MD Anderson was a challenge, it was the first hill and we took it.

At times, it felt like a mountain.  Physically - just getting to Houston from our small community in Utah took almost 10 hours. Pushing John's wheelchair across the walkway between our hotel and the main building, and in and out of elevators, and up and down corridors was exhausting. For John, being poked and prodded, having another bone marrow biopsy, another blood transfusion took their toll.

And then emotionally - waiting for doctors, waiting for lab results, waiting for a glimmer of hope.   All the time surrounded by others in waiting.  This time we were struck by the number of young patients, in their 20's and 30's.  Surrounded by an epidemic of cancer.

But along the way the glimmers appeared, what Pam calls morsels of hope.  In the kindness of strangers who pushed the wheelchair up ramps I couldn't manage or who went out of their way to open doors with card passes we didn't have.  In the consideration and professionalism of every person we met, from housekeeper to waitresses to clerks and ancillary personnel.  We always were treated with dignity and respect. And in the courage, strength, and determination we saw exhibited day in and day out.

Two special moments stand out.  The first, when we met with the physician who gave John his stem cell transplant 11 years ago.  In our past experience, he was cordial and the ultimate professional, perhaps a bit contained.  This visit, he shared a different and more compassionate side of his personality, touching us both when, as we left, he reached over, placed his hand on John's shoulder and said, "Remember, you're tough."

The second moment, on our last day, a follow-up visit with the hematologist to hear the results of the bone marrow biopsy.  She had already confirmed the original diagnosis - Therapy Related MDS - and was leaning toward the same prognosis of six months to a year.  She had agreed with the proposed treatment.  So, when she arrived with a big smile, I dared to hope there could be some good news, any good news.  

I think she was as happy to give the news as we were to receive it.The bone marrow results indicated the disease is not as aggressive as originally thought.  The prognosis - two to two plus years.  Enough time for better clinical trials.  Enough time for breakthrough treatments to surface.  

So, the next hill is before us. John is in the middle of his first treatment cycle and so far, so good.  I am in the middle of researching the gear we need to take the hill.   How to detoxify our environment, as infections could be catastrophic.  How to reduce salt and sugar in our diet. How to enroll him in drinking more water.  What to do in case of an emergency.  How to pace ourselves - for this is a marathon, not a sprint!  A three-legged marathon.

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.

First Things First...

"Courage is the measure of our heartfelt participation with life, with another, with a community, a work; a future."

~ David Whyte

   Consolations

Because I hope you will follow our journey and share our thoughts with others, and because these will be strangers to us, I feel it only fitting to profile who we are and why this chronicle is important to us and, hopefully, to others.

John and I have been married for 33 years (must be comfortable because we both forgot our anniversary this year!)  We met in the summer of 1980 "in a bar in Kansas City."  Just as the song says.  I was an elementary principal at the time, he the Director of Corporate Engineering for a Fortune 500 company.  Both divorced, neither with children, neither intending to marry again.

We were married in Cleveland, Ohio, two and a half years later.  Within a year, John was transferred to Santa Barbara where I created a small boutique training/coaching firm that became my passion for the next 25 years, and he eventually created a small firm specializing in the abatement of asbestos and lead based paint.  That's the raw data.

In some respects, we are quite different.  He loves country and I like - almost anything but. He is a vegetarian, I am not.  He could watch sports all day.  Give me a good mystery.  And then there's politics.  Let's say we cancel each other's vote.  But we are partners, and the medical crises, of which we have experienced our fair share, have forged that partnership. We love each other, yes.  But as important, we like, trust and respect each other.

We have both battled cancer.  Breast cancer for me and non-Hodgkin's Lymphoma for John. The latter was put into remission with a stem cell transplant at MD Anderson 11 years ago. The same MD Anderson we will be visiting next week for further testing, prognosis, and treatment recommendations for the rare blood cancer with which John was diagnosed this week.

We are dedicated to facing this head on as we have faced every other challenge together. With the prayers and assistance of an incredible network of support.  With dignity and a healthy dose of realistic optimism. Learning whatever we can to make the most responsible decisions we can. And with a desire to contribute to each other and to others who are or may be facing a similar challenge.  It is our hope that by writing about our journey as we embark upon it, we can add insight and assistance to others now and in the future.  

It Is What It Is!

"A crisis is a terrible thing to waste."
~ Paul Romer

We are facing a health crisis as great, if not greater, than any we have faced before.  We do not yet know the full extent of this crisis other than what we have just learned from the preliminary results of John's bone marrow biopsy.  He has been diagnosed with a rare blood cancer that will require further information as to prognosis and treatment.  We do not have a clue as to what good could come from this.  But we do trust that something will.

It is out of our desire to create something good from this crisis for ourselves and for others that John agrees we should share our journey here.  Not that we intend to share intimate details, or rage against the universe, or wring our hands in despair. For it is what it is. But this is a blog about aging, and medical crisis and how one deals with it is one of the most challenging aspects of aging I observe. And am now experiencing.

So, in the weeks and months ahead I will be sharing the lessons we are learning, hoping that they will be of help and support to others who are faced with a similar challenge. And hoping you will share with us also - questions, comments, the lessons you've learned.  Let's learn together.