Rest and Re-creation

"Rested, we are ready for the world but not held hostage by it, rested we care again for the right things and the right people in the right way."

~ David Whyte, Consolations

It's been a long three weeks.  Coughing fits that left me exhausted, a tissue box a day head cold, aches, fitful sleeping.  Not the way I'd hoped to spend the holidays.  Not what I wanted, but perhaps, exactly what I needed.

Time to nap, to catch up on taped TV shows and movies, to listen to some favorite music, to read (and reread Consolations) without the usual demands and commitments that the holidays can present.  More important, time to reflect on the past year, a particularly difficult year at that, and to consider possibilities for the coming one, as I have done for the past 34 years.

In the past, I would sit down with pen in hand over a couple days and create an elaborate list of goals, with a detailed action plan of tasks and deadlines and resources.  Elaborate, detailed and even if not totally achieved, enough to keep me focused and feeling somewhat responsible and successful.  In retrospect, however, many of these goals were what I thought I should pursue, what my company or family or obligations required.  What the goal setting books advised.  What I advised others to do.  Responsible and successful, but also too often driven and stressful.  Regretting what I didn't get done as much as taking satisfaction in what I did.

This year, partly due to the debilitating nature of my cold, partly because of my reflections on the past year's challenges and stressors, and partly due to the uncertainty of John's prognosis, I decided to just let go and see what emerged more naturally.  To not be "held hostage" by external goals, by "shoulds" and "ought to's" over which I have little control anyway.  Rather, to commit to broad objectives that felt right for me as well as for the people I love and for my community.  Simple objectives - like spend quality time every day with John, take care of my health at a level equal to the demands of our lives, create something and learn something every day if possible, enjoy - really enjoy - our home and friends, listen to good music, read good literature, commit some time to an organization whose mission I believe in.  And equally important, to remember to rest at a level commensurate with these commitments. Objectives, not goals.  Commitments, not resolutions.  Direction, not destination.

For, whatever 2018 may hold, I aim to deal with it with grace and equanimity, to be content and satisfied with my choices, and to arrive next January with a grateful heart and a healthy body.  

And to all reading this, my best wishes for a happy and healthy new year.

One Part Reflection, One Part Rant, One Part Resolution

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

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

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

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

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

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

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

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

For, what else is a person to do? 

Dancing in the Rain

You'd think I'd have learned this lesson sooner in life.  Heaven knows, I/we have had plenty of opportunities, but it took a wise and gentle doctor to bring it home recently.  

John's hematologist must have some psych courses in his background because he has an uncanny ability to deliver information in a direct, yet compassionate manner at  the most opportune moment. It is one reason we so trust and respect him.  From the day he delivered the diagnosis and prognosis of John's disease, he has never failed to be forthright and considerate, consistently striking that tenuous balance between reality and optimism, a balance too few physicians have yet learned.

He also is a natural mediator, sensing when to speak directly to either of us or both of us as the case seems to warrant.  So, whenever John wants to do something that I fear may be detrimental to his well-being, or I want him to do something that he does not feel ready to do, we turn to Dr. W. and ask him to arbitrate.  

One of those occasions occurred a month ago, when John wanted to go to a nearby casino to celebrate his 75th birthday.  As infection is a threat to John's survival, I have been adamantly opposed to any large group gathering for either of us, and especially so to the casinos.  And John has been remarkably agreeable, a great patient.  This time, however, he persisted.  It was, after all, his 75th birthday, or as he puts it, the 50th anniversary of his 25th birthday.  Fortunately, we had a doctor's appointment within a few days of his birthday, and we agreed that if Dr. W. gave the ok, I would concede to John's wishes.  If not, he would comply.  

The day arrived.  We went through all the preliminaries, weight, blood pressure, temperature, blood test results, the list of typical questions and answers.  And then John posed his request.  Dr. W. paused, looked at John, looked at me, paused again and then - first to both of us, "I don't want to cause any marital discord here."  Then, at me - "We're not keeping John alive at the expense of his quality of life."  Then, at John - "So, I think you should go, but do it wisely.  Take intelligent precautions.  Have a good time and happy birthday."

We did go to the casino.  We went early and he wore gloves while he played.  A few days later, my sister and brother-in-law surprised him for his birthday with a visit from NY.   We had a small party with his Starbucks buddies and a get together with friends. He received several cards and calls and e-mails.  All in all, he had a great birth week.

I've returned to that conversation several times in the interim.  I realize that I've been hoping this storm might pass.  If we are vigilant, if there are medical breakthroughs, if I can protect him.  But the reality is it might not.  So, I'm not throwing away the umbrella or rain gear, but I'm trying to splash in the puddles.  To consider every day some ways to celebrate that we can still go out in the rain together.

Escape Is Not a Dirty Word

"None of us can face what's happening head-on all of the time."

~ Sheldon Kopp

What Took You So Long?

Reading Sheldon Kopp's If You Meet the Buddha on the Road, Kill Him in the 70's was life-changing.  I came upon the book on a bookstore table while on a mission to get past the anger and self-recrimination following a painful divorce, convinced that someone smarter than me, wiser, could provide a road map out of the angst and confusion that was overwhelming me.  I think I had read a half dozen self-help books by the time I came upon Kopp (easy to do in the 70's) and still hadn't found that map.  And there he was, telling me I had to create my own map, that there was no guru, no Buddha out there to show me the way. Or as he stated pretty succinctly in an 'eschatological list' at the end of his book - "it is so very hard to be an on-your-own-,take-care-of-yourself-cause there-is-no-one-else-to-do-it -for-you adult." I had to chart my own course.

Initially, I threw the book across the room.  Then, picked it up and read it again.  And over the years, have revisited parts of it several times.  Whereas he never intended to be another Buddha, his exhortation to take charge, to take responsibility for my life has never left me. 

So, it was intriguing, to say the least, to discover while recently culling my library, that I own another of his books, one that I hadn't revisited for many years.  What Took You So Long ? An Assortment of Life's Everyday Ironies is a slim volume of photographs illustrating simple, insightful statements written by Kopp in the late 70's.  Whereas The Buddha contains language and references that definitely are dated, this little book could have been written yesterday.  

Consider - "You wait for everything to be all right, knowing all the while that the next problem is in the mail" or "Not everything worth doing is worth doing well" or " Unable to get our own way, often we settle for trying to prevent other people from getting their way" or "If we allow pain more of our attention than it requires, we miss some opportunities for joy."

Any of these - and several other - statements continues to ring true for me, perhaps even louder at this stage of my life, but the statement about escape is a welcome reminder, a suggestion that it may even be necessary to take a break, to escape for awhile, without feeling guilty.  Because "often things are as bad as they seem" and yes, "no one can face what's happening head-on all of the time."  So, I'm taking a recess from Facebook for awhile, from all the petitions and surveys, from all the outrage and angst, the venom and the vitriol, from all the requests for contributions.  I'm reading a new mystery series, potting some succulents, redecorating the guest bathroom, working on a jigsaw puzzle, starting a new still life.  It'll all be there when I check in again.  All the worry, all the outrage, all the divisiveness, all the drama. all the challenges.  For now, I choose to escape - for awhile.

And once again, wherever you are, Sheldon Kopp, thank you.

LOL

"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.

https://www.youtube.com/embed/LR2qZ0A8vic?rel=0

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 snopes.com 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 MUSIC...to 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!!

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.

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.

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.

  

A Balancing Act

"The word happiness would lose its meaning if it were not balanced by sadness."

~ Carl Jung

I was reminded of Jung's quote this past week as it has been a week of both pronounced happiness and pronounced sadness.  In the midst of news that two friends had been diagnosed with cancer and an acquaintance had committed suicide, we also got the news that John's biopsy for possible prostate cancer had proven negative.  Sadness and happiness within a matter of days,

I think I first grasped this idea on a Saturday almost 50 years ago, although I couldn't have expressed it as such that day.  Early that morning my ex and I, visiting our families for the first time since we had married and moved to California, were awakened with a frantic call from my grandmother.  Grandpa was having a heart attack.  We raced to their home to see him being put into an ambulance, and within an hour, got the news that he had died.  

While my parents and aunts and uncles attempted to console my grandmother and each other, I, as the eldest grandchild, was assigned the task of helping my siblings and cousins stay calm in the midst of Sicilian grief.  How I managed, I can't recall, but somehow we got through the morning.

And then, that afternoon, I changed clothes and attended the wedding of my ex's younger sister, the original reason for our visit.  A death and grief in the morning, a wedding and joy in the afternoon.  I do recall, vividly, two clear, distinct thoughts -  "This is surrealistic." Followed in the next breath - "I guess this is just the nature of life."

I expect, as we go forward, there will be more weeks like this past one.  Weeks with news that someone or some ones we love are facing a health challenge or have died.  We are, after all in our 70's now, living in a community that attracts retirees.  We most certainly will not go unscathed.  I have recognized this for some time.  What is clearer to me, however, is my responsibility to seek the happy moments, to create them with greater attention and diligence, and always, always to be grateful for them.