Wednesday, August 16, 2017

Little Things Mean a Lot



Recently, I posted on Facebook -

"A day of simple pleasures...cutting roses in our backyard, a lovely lunch with a fine friend (and a crepe and creme brulee to boot), finding a tiny treasure for my office, an afternoon nap, and a bowl of popcorn while watching the World of Dance with John, who's had a good day too. And off to bed with a good mystery - I'm a happy camper."

I doubt I would have written something like this 20 years ago.   Is it because my world has become smaller and more confined?  Is it because our lives have become consumed by handling more important things?  Is it because the bigger issues in my life are looming as so beyond my control? So far beyond my control that to pay attention to the little things is a matter of survival? 

Or is it simply because I'm older and wiser? Which, of course, is the explanation I prefer!

No matter.  Whatever the reason or reasons, 
  • having a good piece of chocolate, well anything chocolate
  • seeing a movie with a friend
  • watching The Voice or So You Think You Can Dance with John, critiquing the whole way through
  • taking the time to enjoy spectacular coral desert sunsets
  • journaling on the courtyard chaise in the morning when the only sound that interrupts my concentration is our friendly pair of mourning doves
  • laughing at a sacrilegious Facebook post, well laughing in general
  • cleaning out a drawer or shelf - I can hear the disbelief now - "you find that pleasurable?" I do, I do.
  • watching a baby play, whether a human baby or a puppy or a kitten, a baby
  • reading good writing
  • hearing John laugh
  • holding hands
  • learning how to do something new, but especially anything on the computer - John can hear my yell of triumph anytime I figure out something for myself.
  • receiving an e-mail, message or phone call from an old friend
  • hearing "I love you" and knowing it's true
I can regret that I didn't learn how important or how satisfying this when I was younger, but that's a waste of time.  I'd rather pay attention to these little things.










Saturday, August 12, 2017

I Hope Life Has Been Good to Her


I haven't thought about her for years.  I doubt she would remember the dinner she prepared 40 years ago as a favor for a mutual friend who was deeply concerned for me and thought she could be of help.  In the midst of debilitating panic at the prospects of living alone for the first time after a nasty divorce, I, too, was concerned, and thus, very grateful for the invitation.  Hoping she, indeed, could be of help.  

I don't remember her name.  I'll call her Sara. Our friend said Sara was ahead of me in the stream of 70's divorcees, swimming with grace and serenity.  Walking into her home, I could feel the peacefulness immediately.  After our meal, she got straight to the point. This I remember vividly.  "Mike says you are struggling with living alone and hopes I can offer some good advice.  Well, I'm no expert, but these three things work for me, a career I love, friends of the same sex, and hobbies or interests that fill the empty hours."  Simple. Straight to the point.

Well, I was teaching and loved it. I had a group of female friends from among neighbors and colleagues, who supported, and worried about me. But hobbies, interests? All my interests had been directed by my ex. So I thanked her, not adequately I'm sure, and set out to develop my own hobbies. And never saw her again. I eventually settled on needlepoint,  needle pointing a pillow for everyone I knew. Eventually, settled into a modicum of comfort in my singleness, but more importantly, gained the confidence that I could and would do so eventually with my own style of grace and serenity.

So what triggered this memory?  No single comment or event, but rather a series of events that took place this week.  A week of daily contact with friends, old and new. A week of sharing memories, tears, laughter, good food, serious conversation, fears and hopes and even a few interesting possibilities for the future.  A week that has culminated with suddenly remembering Sara and thinking of how, 40 years later, I would respond to her advice.

Some of the contacts this week were extemporaneous - e-mails, Facebook posts, a telephone call - from friends acquired along my career path, some friendships over 25 years old. Others - the newer St. George friendships - had been planned for some time.  My monthly luncheon date with a friend in her 80's, who shared her dream of seeing Alaska some day, and opened the possibility that we might do that together.  The next day, lunch at a local spa with a friend in her 50's, Grasshopper to my Sensei. Discussing my plans for the future, she sparked an idea for a  project I could become passionate about.  Asked how she might be of personal support in the days ahead, we committed to a monthly luncheon, at the spa, of course.

Then, there were the gatherings.  A monthly meeting of a group that has been meeting for two years now, pulled together in the hopes that these women would be a bastion of support in the inevitable life crises that, indeed, have begun to emerge.  Aging from 65 to 82, with a fount of knowledge and expertise and a bottomless well of compassion, they have become the haven we hoped for two years ago. For me, for sure. Then, today, lunch with friends to discuss Hillbilly Elegy, four "senior citizens" who share a love of reading and learning, 

So, how would I respond to Sara's advice today? At 76, retired, with perhaps too many hobbies, I would say friendship has become the most important, enduring element for me in living a satisfying life, whether alone or with a mate.  I would add, that especially as I have aged, I value a web of friends of different generations and different interests.  That though it is tempting, especially in today's divisive, hostile environment, to surround myself only with people who think and believe as I do, the diversity of age, interests, and viewpoints keeps me engaged and invigorated. That I need friends to cry with, and friends to laugh with, too. That I need friends who share a piece of my history, friends who nurture me in the present, and friends who help me face the future.

I take comfort in knowing I have created just such an elaborate web of friendships over the years, largely by remarkable good fortune, surely not by conscious design.  I don't know how Sara has fared.  If she would amend her advice as I have.  I hope life has been good to her. I hope she is surrounded by a web of loving, nurturing, diverse friendships.




Wednesday, August 2, 2017

Illegitimi Non Carborundum


It has been almost eleven months since John was diagnosed with Therapy Related MDS, a relatively new and currently incurable cancer of the blood.  Our initial prognosis with six months extended, thanks to a second opinion, to two years.  These months have flown by, but looking back, I am proud of how we have settled into a "new normal" - a daily way of living with this new challenge.  A new normal marked by grace, partnership, support and a quality I've come to recognize as resiliency.

Resiliency - elasticity, malleability, flexibility, plasticity, buoyancy - I've long recognized this in John.  With a history of non-Hodgkins that required the stem cell transplant that is the cause of his current illness, five hernia operations, three bouts of skin cancer, and macular degeneration, one might expect him to rail against the heavens or to just give up or give in. But he endures.  He keeps getting up.  He takes a day at a time and never relinquishes the fight.  He stays remarkably present and positive. He remains optimistic and reminds me that he's not a statistic.  He reminds me, too, that he beat the odds once, and he can do it again. That he can endure until there is a breakthrough that will extend his life with me.

What I haven't recognized is that his resilience has rubbed off on me.  I've thought of myself as tenacious, strong, and determined; and those are not bad qualities. But I like resilient better.  It's more fluid, less easily bent or broken.  Definitely an asset during these tenuous days.

And these days are tenuous.  There are the ordinary breakdowns of everyday life.  The breakdowns we all experience. We lose our TV picture. It's so hot that our potted plants all wither and die.  We keep receiving those calls that our computer is infected or someone can help us with college loans we never took out 50 years ago.  A light on my dashboard lights up for the 4th time, still not fixed after three trips to the dealer. The bombardment of news gets more frightening with each passing hour.  I'm not sleeping well.

What's a resilient soul to do?  Well, work patiently with the disembodied voice in technical support to recover the TV picture and be grateful we got a living breathing soul.  Remove the dead plants and wait till it cools off before replacing.  Stop answering calls from locations we don't recognize.  Take the car to the dealer and tell them the car will be returned if they cannot fix it properly once and for all - they did.  And limit the news, which also cured the sleeping problem.

Then, there are the bigger breakdowns.  The medical assistant that we have come to rely on for information and support suddenly leaves the clinic to move to another city.  A few days later, a dear friend who has been a key member of my personal support system lets me know she is moving, a wise decision for her, another loss for us.  A shot that we have hoped would make transfusions needed less often has had no measurable effect.  

What's a resilient soul to do?  Well, learn to access and interpret John's blood test results on the computer.  (Actually, doing so makes this resilient soul feel just a little proud of herself). Get to know more of the clinic staff. Plan a trip to see our friends after they are settled in, giving us something to look forward to.  Work with our doctor to design changes to John's treatment plan.

This is our new normal.  To take in new information and adjust, as quickly as we can, as patiently and gracefully as we can.  To work with each other and our network of support. To seek solutions rather than rail against the problems.  To focus on what is within our control. A day at a time, some days an hour at a time.

I do like resilient better.  It's more fluid, less easily bent or broken.  Definitely an asset during these tenuous days.  Definitely, a valuable asset for an unknown future.








Saturday, July 22, 2017

The Zen of Jigsaw Puzzles


Keeping this blog is finally becoming a pleasure, rather than a project I think I should pursue.  Selecting the quotes and photos, organizing my thoughts, crafting the content, checking to see how well a post is being received, all enjoyable. That is, once I select the topic for the week.  Most often, I churn,  debating ideas, mulling a title, fretting about the opening line, wondering whether this is of value to anyone other than me.  This week, therefore, I decided to put all that on hold and to trust that an idea would simply emerge.  It did.

Last night, I woke at 3 in the morning, a common occurrence of late.  I got up to go to the bathroom and returned to note, again, how grateful I am that John no longer snores.  A result of his stem cell transplant years ago.  I tossed a bit, tried a couple relaxation techniques that sometimes help to lull me back to sleep, and then, unsuccessful, decided to heed the advice of sleep therapists to get up and do something else. 

I padded into the kitchen, intent on getting something to drink before settling down with a mystery and spotted the jigsaw puzzle I have been working on for the past couple days.  A great puzzle with sturdy pieces, an intricate and whimsical picture, bright colors and just the right level of difficulty, challenging but not frustrating.  And close to completion.

For 90 minutes I persisted, patiently and calmly.  I would pick up a piece, examine it carefully, scrutinize the picture. I noted tiny details I hadn't noticed before, variations in texture and subtle differences in shading.  And the more I noticed, the easier it got.  I could pick up a piece and put it down exactly where it belonged.   With a surprising sense of accomplishment.  If not, I would simply place it back in the box and choose another. 

Patient, calm until finally done.  

If anyone had seen me then, standing over the finished product, grinning like the Cheshire Cat, I'm sure she would question why I might take such satisfaction in completing a jigsaw puzzle. And she would have been missed the point.  For I was grinning with the sudden realization that, for 90 minutes, I had been fully present to the task at hand, fully engaged. Not grappling with why I couldn't sleep.  Not chastising myself for not having taken a sleep aid.  Not worrying how I was going to manage today.  Not stewing over this week's post. Above all, not wondering if this is my future, waking, alone, at 3 in the morning to do a jigsaw puzzle. Engaged. Present.

My grin almost dissolved into tears.  For 90 minutes, I hadn't worried about John's health or dwelt on the state of the nation, or chewed on the daily challenges I am confronting with my own aging.  I hadn't turned on TV nor checked Facebook.  I had simply become engaged with something that required attention, complete attention in the moment. Simple, granted not easy, but always available.  Like a good book, or a foreign film with subtitles, or deadheading roses, or really listening to a friend.  Presence, my topic for this week's post had emerged.

Now, I have no illusions that having this experience means I can call it up again on a whim. I have been here before. It's just so much easier to dwell on past memories or future concerns. Easier to be lulled by distractions or caught up in the cacophony of the latest breaking news. Easier to get swept up in emotions (mine or others') or the internal chatter I sometimes confuse with thinking.  Easier, but not very satisfying.

I have no illusions that at 76, I can develop the same ability to dwell in the present as a Buddhist monk who has meditated for decades, or a yoga practitioner, but I am determined to improve.  To at least notice when I am somewhere else and to return to now, the present moment, the only moment in which I have some control.  To restore focus and calm no matter the existing circumstances.  Maybe jigsaw puzzles can become my meditative practice?


Friday, July 14, 2017

Help Wanted


I went to a support group for the caregivers of cancer patients yesterday - the first support group of its kind that I've ever attended.  I almost didn't go.  Used all the reasons I've used historically. "I'm not a group person. I'm strong enough, smart enough, I ought to be able to handle this on my own. I don't know these people.  We've done this before, my own cancer, John's non-Hodgkins lymphoma, his skin cancers."  Reasons I've used to avoid asking for other kinds of help.  Reasons I've used to deflect help when it's offered.  

I had the postcard inviting me to attend in my purse, just in case I would decide to check it out. But first, brunch with a friend, herself in the throes of cancer.  As we chatted, I heard myself sigh a sigh of relief when she told me that she was getting the counseling support I'd been encouraging for months.  I heard myself say, "in such extraordinary times, even the strongest, most capable of us need extraordinary help."  And in that moment, I decided.

Now, I need to admit that I still questioned myself the entire way there, almost backing out when I saw the door to the meeting room had been closed.  And I can't share what happened there, other than to say that the topic was emotions, the support was great, the group leader skillful as well as compassionate, and I will be returning next month.  Most important for me, however, was coming home to reflect on how I think about asking for help and the possible consequences for both John and me.

To help me clarify my thoughts last night, I turned to David Whyte's Consolations, the extraordinary volume of his reflections on the underlying meaning of everyday words, and there was the essay, 'Help', underlined and tagged.

  • "Help is, strangely, something we want to do without, as if the very idea disturbs and blurs the boundaries of our individual endeavors, as if we cannot face how much we need to go on."  
  • "Not only does the need for help never leave us alone; we must apprentice ourselves to its different necessary forms, at each particular threshhold of our lives.  At every stage we are dependent on our ability to ask for specific forms of help at very specific times and in very specific ways."
  • "Every transformation has at its heart the need to ask for the right kind of generosity."
  • "It may be that the ability to know the necessity for help; to know how to look for that help and then most importantly, how to ask for it, is one of the primary transformative dynamics that allows us to emancipate ourselves into each new epoch of our lives."
Underlined and tagged, read and reread.  But understood this time more deeply, more profoundly.  For this is an extraordinary time -  we have other friends who need our help even if only to listen, even as we are pressed to help each other, and every day and virtually every hour we receive phone calls and e-mails requesting support in some form - surveys, petitions, more money.  Every day and virtually every hour a message appears on the TV or computer of someone, some group in need.  

And we are older, we have less energy, we have decisions to make with less information than we want or need, less assurance that our decisions can make a difference.  

So, duh!, (ok, not very literate), although I may be strong, and I may be intelligent, and I may have faced other challenges well, this is a new challenge in a new environment, at a different time and place, at a new threshhold.  So, I want to go back to the drawing board and determine the very specific forms of help I/we need, not just physically and logistically, not just intellectually but also emotionally.  I want to determine who can best provide that help for me and for us - a friend or a professional?   And I need to gather my courage and, yes, humility and ask.  

For I believe that most people are willing to help, but they need to be asked and asked specifically. They are not mind readers.  And most people will be honored to be asked, especially if you have helped them.  And most people will feel acknowledged for their competence and caring, just as we are when we are asked for help that we can provide.  At least most of the people I know.

I have placed Consolations on my bedside table, beneath the tablet on which I've begun my list of specific requests for help.  I've blocked out some time to work on this project, accepting that I will need to revisit it in the weeks, the months and, hopefully, the years ahead of us.  For, "even in the end, the dignity of our going depends on others' willingness to help us die well; the sincerity of their help often commensurate to the help we extended to them in our own life."

And, yes, I will be going to the next support group meeting.







Friday, July 7, 2017

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



Tuesday, June 27, 2017

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? 

















Wednesday, June 21, 2017

Rules for an Old Woman Thriving



A good friend called recently to share news of the wonderful celebration her family surprised her with for her 90th birthday.  A well deserved celebration for a life well lived.  For a woman who continues to live enthusiastically. One of my role models.

Our conversation got me questioning how I am living today, whether I live with the same zest I so respect in my friend.   And it sent me back to a remarkable book I have read twice now.  Rules for Old Men Waiting, by Peter Pouncey, is the fictional story of an old historian and recent widower, who realizing that he is dying, compiles 10 rules by which to live his final days with as much dignity and intention as he can. 

Pouncey's old man, MacIver, is living alone in a cabin that has fallen into disarray and disrepair, as he himself has, while in the midst of overwhelming grief.  So his rules, are, of necessity, very basic.  "Keep personally clean.  Make the bed every morning, and clean house twice a week.  Dress warmly and light fire when necessary, burning least important things first.  Eat regularly.  Play music and read.  Work every morning.  Nap in the afternoon if needed."  Eventually he refines his Rules for Winter Watch/Rules for the Inside Game and settles on writing a novel as his last piece of "work."  And the result, a moving novel within a moving novel.

I am not ill, not dying.  But I am now 76, in the midst of the Age of Distinction as Michael Gurian describes this stage of life in The Wonder of Aging. ( I much prefer his term to "the old old" that many gerontologists now employ for my age group.)  I want to live the rest of my life with as much dignity and intention as I can for as long as I can.  If I make it to 90, I would like to be a role model for someone else behind me in the stream.  I want to thrive, not merely survive, with "passion and compassion and humor and style and generosity and kindness."

Therefore, my "rules", for now, a work in progress:

  • Learn something every day - how to use the computer more effectively, something about aging, something about another country, current events (within mental health boundaries) - something.
  • Simplify our home or life style in some way - reduce, reorganize, recycle, restrain.
  • Prepare one vegetarian meal each day - alright, it's one step in the right direction.
  • Read good literature every day.
  • Spend at least 30 minutes outdoors each day.
  • Do something special and enjoyable with John every day and make contact with one friend  - thank heaven for e-mail.
  • Move - as in walk.
  • Find a way to laugh - laugh out loud.
  • Spend at least 30 minutes a day on an activity that requires creative expression - writing, drawing, decorating. 
  • My work - to engage in an activity that contributes to someone other than myself - right now, that's this blog (hopefully this contributes to some folks), coaching, and some day, my own book.
Now, I realize in reviewing this list that there are some things here that I already do with great regularity.  I realize that there will be always be days I don't do all of these things, can't do all these things.  There will be naps and movies and lunch with friends and catchup telephone calls.  There will be doctors' visits and emergencies.  There will be other options, others opportunities.  In six months or a year, I may add something, delete something, or expand something.  But for now, this feels appropriate, and doable and satisfying, a structure for thriving.









  

Thursday, June 15, 2017

Nevertheless, He Persists


John is my husband of 34 years, my best friend, my partner, my love, and my hero.  My hero, because over the years, I have watched him endure three bouts of skin cancer, five hernia operations, the gradual loss of hearing, and a stem cell transplant for non-Hodgkin's Lymphoma.  Each time with perseverance, courage and a belief that he could handle whatever was thrown at him.  And he did.  And so, we did.

Last September he was diagnosed with Therapy Related MDS, ironically brought on by the transplant he received 15 years ago, the result of a mutating chromosome impacting his ability to produce red blood cells. One of his first questions was whether there was a gene for orneriness, for though we have been told his condition is currently incurable and the prognosis for survival is approximately two years, he is determined to prove the experts wrong.  After all, the original lymphoma prognosis was three years and he made it for fifteen!

His determination and his persistence are remarkable, and perhaps the most critical reason he has survived so many physical challenges with a modicum of grace.  I watch him as he gets chemo shots for five consecutive days each month, wait with him to hear if he might need another transfusion (we've lost count of how many now) and marvel that he can get yet another round of Neupogin shots for declining white blood cell counts with calm acceptance. The most he has ever complained is to say he is feeling like a human pin cushion. The most impatient he becomes is when he has to wait more than 15 minutes for an appointment.  I can almost predict the moment I'll hear, "C'mon doc, I'm ready," 

I have always ascribed his survival to resiliency or to pure stubbornness, to that hypothetical gene for orneriness.  Today we had an exchange that made me reconsider.  We were driving back from an appointment with the eye doctor, because on top of everything else, John was diagnosed with macular degeneration earlier last year.  The diagnosis today confirmed our observations that his eyesight is worsening, perhaps the result of the chemo, and our decision to curtail his driving, though difficult, is appropriate. I told him how much I respect him, how much I admire his inner strength.  How much he inspires me to remain optimistic, to stay strong, to fight the good fight.  How much he is my hero.

His response was to repeat a quote I had never heard before.  "Persistence and determination alone are omnipotent." ~ Ray Kroc,  the founder of MacDonald's. Persistence, determination, not stubbornness, not orneriness.  I asked when he first came across the quote; he said many years ago.  He had to look omnipotent up in a dictionary, but the quote has been one of the most important in his life, and consequently in ours.  I asked if it has become a silent mantra.  He paused and said no, he just has tried to live his life with those values at his core.  And in my experience, he has.

There are many people who, over the years, have commented on my strength.  I know I would not be as strong as I agree I am were he not as strong as he is.  As persistent and determined as he is.  He is my best friend, my partner, my love, my hero.

Thank you, Ray Kroc.







Wednesday, June 7, 2017

The Sounds of Silence




Silence has not always been comfortable or comforting for me.  Silence - not merely not talking or being alone, but true silence, no music, no TV.  No computer, no digital reader, no background noise, no distraction.  Just me, my thoughts, my surroundings.  Quiet, stillness. Quiet enough to hear my breathing, to feel what I'm really feeling, to hear the inner dialogue that I would rather ignore.  Silence for a great part of my life was disquieting.

I have a long history with trying to cultivate a friendship with silence. I cannot count the times I tried to meditate and gave up, unable to still what Buddhists aptly call my "monkey mind" for even a nanosecond, unable to resist rebuking myself for my inability. It was challenging 40 years ago when I first tried, virtually impossible, even without the many distractions available today.  I was newly divorced , living alone for the first time, overwhelmed by conflicting emotions and an uncertain future.  So I turned to journaling.  To slow down the chatter, to capture it on paper so I could see what I could not bear to hear.  

Over the decades now, I've written on loose leaf paper, in college composition books, in Italian leather journals with gilded leaf edges.  I've written snuggled into the corner of a couch or a favorite comfy chair.  On airplanes, in hotels, late at night when I couldn't sleep, in the middle of the day when I found myself obsessing with an idea for a project or a problem that needed resolution.  Initially I had to have background noise, other people nearby, the TV, eventually soothing music.  

But I wrote almost every day.  I wrote when I didn't have anything special to say.  I wrote when I thought I had something profound to say (on rereading some of it, I only thought so.) I wrote when I had cancer and I wrote volumes when John had cancer.

Along the way, journaling evolved from habit to routine to cherished ritual and without realizing it, I learned to slow down the chatter, turn down the volume.  I became comfortable with discomfort.  I turned off the TV,  turned off the music.  I remained quiet after I stopped reading or writing.  I discovered solace in the sound of a distant mourning dove.  Came to hear the breeze in the trees outside our home before I could feel them.  Began to listen for the spaces between sounds.

Maybe I assign too much credit for this to journaling.  Maybe this comes naturally with age, with weathering personal loss, with being unwilling or unable to endure the assault of modern technology, the incessant noise.  Maybe I would be welcoming silence without all those composition books and gilded journals.  Or maybe it's that the distractions have become something to distract myself from?  But I look at the folks with their earbuds, and phones and tablets and wonder if/when they will make friends with silence. 

Sometimes, in the total silence of the night, when John reaches out to take my hand, or I reach out to reassure myself that he is still there,  the sudden thought that I might face this silence alone can take my breath away.  But now, more often that not, I reassure myself that I can.
















Saturday, May 27, 2017

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.


Wednesday, May 17, 2017

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.