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.

Cherish Is the Word

The word cherish is in my reading vocabulary, but not much in my speaking or writing.  Oh, I had promised it would be 15 years ago when I fought breast cancer and realized how many people cared about me.  When I noticed how much I hadn't noticed.  When I vowed I would be more present, more attentive, more grateful.  When I realized how much I had to not only be grateful for, but to cherish and cherish deeply.  For, to be grateful for a red rose or a pretty sunset, to be glad a friend called can become an intellectual exercise, a momentary acknowledgment, a good habit, but a habit nonetheless.  

My intention was confirmed and reaffirmed when, two years later, John was diagnosed with non-Hodgkins, and he received his stem cell transplant.  And survived.

I'd like to say I've lived the dozen or so years since then having kept my promise to myself, but I haven't.  I became distracted, caught up with retirement, and moving, and planning and preparing, more everyday tasks and chores.  I didn't even catch myself up short when John was diagnosed again a year ago.  After all, more tasks to get our "house in order."  More planning and preparation.

Then, last weekend a series of sweet, small events gave me pause.  Telephone calls from old and new friends to see how we are holding up.  To remind me they are here for us.  A visit with dear friends who were about to move.  And another from friends we left behind when we moved.  Hugs and words of endearment and encouragement.  And tears that flowed for days - with sadness and gratitude.  So much, so many to cherish.  How could I have forgotten?

Why does it take a crisis for some of us to remember?  To cherish what we have now.  To cherish deeply what we have now.

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.

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.

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.

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

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.