The Sounds of Silence

"To hear, one must be silent."

~ Ursula K. Le Guin

It has taken me a few months to venture into the waters of silence. I'd like to say I purposely chose to wade in, but it has happened gradually and accidentally at first. Like so many folks these days, technology has made it all too easy for me to be distracted - the computer, the TV, the phone, notepads - so easy and enticing.

With John's death, 21 months ago today to be exact, I initially found silence to be foreboding. In the middle of the night, when I would wake to overwhelming grief and anxiety, it became a habit to get up, turn on the TV or music and distract myself until I could fall back to sleep. During the day, I would read (usually with a background of music), or call a friend, or run off to do errands or attend a meeting—anything to keep the pain at bay, at least for a little while. At least until I could parcel it out in doses and drum up tried and true approaches that had guided me through other challenges of my life - approaches, in retrospect, that only kept the demons at bay. 

And then, the virus hit, and though I thought and hoped, as many of us did, that everything would be back to normal by autumn, the rising statistics this summer soon proved me wrong. June and July presented a confrontation with everything I believed about myself, the future, and my ability to quiet the cacophony in my head and plan for the future. How does one plan for such an unknown future?

Then, one recent morning, with no particular reason that I can recall, I started to journal in total silence. No music, no news, silence, and the quality of my writing and the level of honesty was so noticeably different that I knew immediately that I could only still the inner noise and confusion by being willing to be quiet enough to hear and deal with it.

At first, I was stunned by a level of grief that I now realize I had simply covered up. Cloudbursts of tears became thunderstorms at the mere glance at John's photo or the discovery of a loving card. I could feel waves of irritation or anxiety physically when I prepared to run even the simplest errand. The more I wrote in silence, the more I got in touch with outrage over how this virus has been mishandled and my dismay over the distrust, nastiness, and division I see in my country. The more I wrote, I more I got in touch with a fear of incompetence and a degree of loneliness I had not felt in decades.

Gradually, I lengthened the periods of silence. I wrote more and more. Began to take my lunch out to the patio and just listen for birds or children playing behind the backyard wall. Slowed down and enjoyed my food. Noticed the sound of the breeze through the trees in the early hours of the morning or Rufus' gentle breathing as he curled up beside me in bed. Caught an idea as it surfaced unexpectedly. 

But most importantly, I recognized, quite abruptly in fact, that my underlying fear was not that I couldn't cope with the present, but instead that I had no sense of purpose for the future, and that I knew errands, and house maintenance and even volunteering were no longer enough. That, without John, I have come to yearn for family and physical proximity to people with whom I have a longer and more intimate shared history. At that very moment, I decided that I will move to New York State when my younger sister retires. At that very moment, I accepted that just as a future decision has emerged in my willingness to be still, so will a larger purpose.

One recent night I realized that I hadn't watched TV for a week other than to turn on some music while I cleaned the house. And that I am going to bed earlier and sleeping better. That when I do wake, I don't get upset. I merely read awhile until I go back to sleep. That projects are emerging more naturally, like simplifying the house, not just organizing it. Or finding it easier to let go of "stuff" because I'm already thinking of moving. Or knowing what I want to blog about without false starts and second-guessing!

Am I totally comfortable with silence? Not by a long shot. Do I plan to take up meditation? Not now, not yet. But I am growing comfortable with long stretches of silence, more confident that I will hear what I need to hear. And, surprisingly, grateful for this period of solitude.

Just When I Think.....

"Future shock is the shattering stress and disorientation that we induce in individuals by subjecting them to too much change in too short a time. "
and
"The illiterate of the future will not be the person who cannot read. It will be the person who does not know how to learn." 
~Alvin Toffler  

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

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

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

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

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

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

Looking Back in Order to Look Forward

"Sometimes you have to look back to be able to look forward."
~ unknown

It's that time of the year when I look back to see where I've been, what I've accomplished, and where I want to head in the coming year.  I've done this every year for the past 35 years except last year.  John had died in November and the best I could do was hope that I'd endure the grief and mourning that overwhelmed me - and I wasn't so sure about that.

So, this year I dared to pull out my private journals from 2018 and 2019 (six in all) and began to read, hesitantly, a few pages at a time.  Knowing I would dredge up painful memories, bittersweet memories, but also, hopefully, memories that could sustain me and buoy up my tentative optimism for the coming year.

 I had so many questions:

• Had I been the compassionate companion I wanted to be?  Did I do enough?
• What help and support meant the most to John, to me, to us?
• What help could I or should I have asked for sooner?
• Why was this past autumn so challenging? Why am I optimistic, even if cautiously, now?
• What have I learned from these past two years?  How have they shaped me?
• What could I accomplish or contribute as a result?  What calls to me?

I've started at both ends of those 26 months, the early months after the diagnosis and the last months immediately preceding and succeeding his death.  And the months of this previous autumn.  It's glaringly obvious that this will take me more than a couple weeks to accomplish, as I write a minimum of two college-lined 8 1/2 x 11 pages every day and many of them are challenging to read.  I've taken on a  project that could well take a few months.

But this much I have learned already:

• This past autumn was so challenging, in part, because the summer flew by with relative ease, and I became complacent.  I was stunned by the impact of darker mornings and earlier dusks and much more anxious than I had anticipated for the impending anniversary of John's death as well as the holidays.  My private journal pages contain more grief and anxiety than is my intention to share here.  Not that I didn't share that with close friends and a counselor, but my intention here is to be helpful and as positive as possible.
• Speaking of intention, I was reminded that we promised each other from the very first week that, whatever came our way, we would handle it together with as much grace and dignity as we could muster.  And my reading to date reaffirms that we did, some days better than others, of course, but we clung to that promise especially in the final weeks of his life.
• In the weeks following John's death, I was overcome with regrets.  Normal, I'm told, but so very painful.  It was, therefore, a gift, and an affirmation of the value of all that journal writing, to come across the passage where I captured one of the last things he said to me - "How was I ever so lucky to have found you?"  He thought I did enough, more than enough.  And today, that's good enough for me.  
• Regarding support,  I learned so much about support - especially about needing it, asking for it and accepting it willingly and graciously when offered.  So much that it will be the topic of my next post(s), maybe eventually, a book.  For me, looking back is helping me to rebuild a bruised sense of self-confidence, to reassure me that I will be ok, maybe stronger than ok, and to point optimistically to a future that holds purpose and satisfaction.  
• I'm back.

How Could I Forget?

"Life is what happens while you're busy making other plans."

~ John Lennon

Where did the summer go?  I had so many plans - plans to write, maybe travel a bit, complete reorganizing the house, lose 10 pounds (again), and of course, deal with this on-going grief as it was sure to arise.

Then, life happened.  It interrupted my plans in late May when I woke in the middle of the night with an attack of vertigo, the room spinning, my stomach churning, and the realization that should I fall, no one would know.  A realization that brought on a wave of grief and anxiety I hadn't known since the days immediately following John's death in November.

It was this event that set into motion a series of challenges and decisions that would occupy several following weeks.  First, the diagnosis of Positional Vertigo, exercises to correct it, weeks of unsteadiness and incipient nausea, and always the fear of falling.  Then, hearing testing and hearing aids.  Followed by a balance assessment and the warning that my balance was so poor that I was in danger of falling, with or without vertigo.

For a while, it seemed that each new attempt to resolve a problem only led to the identification of another problem.  It took all of my emotional energy to avoid holding a major pity party for myself.  Needless to say, I didn't travel, didn't write beyond my personal journal pages, and comfort snacking didn't do much for a diet!  So much for plans.

Ultimately, I did resolve my health challenges.  I enrolled in a balance course and made significant inroads in organizing the house.  I got an alert system which has alleviated much of my concern about being alone.  And while I haven't lost weight, I haven't gained any - a small victory considering all the stress!

So, as dawn arrives later every day and dusk settles sooner, as autumn is in the air and I anticipate the first anniversary of John's death, my second Thanksgiving and Christmas without him, I could easily descend into anxiety and trepidation.  However, the greatest accomplishment of this summer has been to remind me, not that life happens while I'm making other plans, but that I have the resiliency, the skills and support to deal with it.  I almost forgot.  

This Much I Know

"Healing in grief is a lot like the onset of spring.  It's unreliable and fickle."

~ Alan D. Wolfelt, Ph.D.

Unreliable and fickle.  Certainly my experience.  It's uncanny how this spring my inner mood so reflects the weather - or is it vice versa?   

Some days, the skies are gunmetal gray and the temperatures have dropped by ten degrees.  It's all I can do to get out of my nightgown and accomplish anything.  A song, a telephone conversation, an unexpected request related to John's death and I'm weeping.  A grief burst to rival the cloudbursts that have been all too common this spring.  

Some days, I wake to sunshine and the expectation of a good day, but by noon, banks of gray clouds roll in and the threat of yet another cloudburst increases by the hour.  On these days, it takes so little to unleash my own cloudburst of tears.  For how could those grief experts who warn you to prepare for the first anniversary or birthday or holiday know how easily I can fall apart at the sight of the first tulip, remembering the delight he took in planting them.  Or the sight of the first hummingbird, reminding me that he is not here to fill the feeder.  Or how even anticipating the first roses brings tears as I know he will never again bring in a fresh rose in the morning to greet my day,  How could they know?

Lately, however, there are days when I think I'm making progress through the forest of my grief.  The sun shines.  It's warm and a breeze whispers the shrubbery.   I have energy, look forward to the day and getting out and among folks.  The memories are sweet.  I barely shed a tear.  I even laugh.  On these days, I can believe there will be more such days, hopefully, many more.

So, this much I have come to know about this path I'm walking - the journey is, at best, unreliable and fickle.  Grief bursts are to be expected at the most unexpected times.  They are a part of the journey, but they, like spring showers, eventually pass.  So, I do best when I take it a day at a time, some days an hour at a time.  

I know that quotes like the above help me to make sense of my experience.  I know that the good days, and there are good days, are cause for celebration. The good days, and there are more good days, are cause for optimism.  I know that somehow, someday, the firsts will not overwhelm me.  I know that I will survive, and maybe, just maybe, even thrive again.  Even if, today, the clouds roll in again.

One Step at a Time

"Mountains cannot be surmounted except by winding paths."

~ Johann Wolfgang Von Goethe

As much as I love a good quote and have notebooks and computer files filled with them, I have committed very few to memory.   This quote by Goethe is the most recent.

In reflecting on how few I have memorized, I realize there are three reasons a quote makes the cut - it conveys something I already believe but with fewer and more impactful words, it evokes a feeling or belief I wasn't aware I have, or most importantly, it challenges and impacts the way I am thinking.  This quote falls into the third category.

Prior to coming upon the quote, I was most influenced in the way I think about life and its challenges by a transaction with a friend in December l999.  We had just moved to Vegas with my mother, who was grieving the sudden death of my dad that October.  Determined to give her a decent Christmas and reassure her that this was now her home, exhausted and grieving myself, I nonetheless pulled out all the stops and decorated the house (with many boxes still unpacked in the garage) and invited friends for a holiday party.  

The evening hadn't progressed very long when my friend pulled me aside to paraphrase the Breda O'Connor quote and remind me that my future as my mother's caregiver was a marathon and not a sprint - a simple, immediate, and effective image for me.  So effective that I clung to that image for the next 18 years, through caregiving for mom, my battle with breast cancer and John's stem cell treatment for non-Hodgkins Lymphoma.  And it served me well.

But today, soon to be 77, once again a caregiver, the metaphor or image of running a race, even if a marathon and not a sprint, is no longer helpful.  Not that I would have recognized this were it not for stumbling on this quote.  Somehow the image of walking a winding path feels more congruent with my experiences these past 18 months since John was diagnosed with a currently incurable form of MDS.  Plugging uphill, with unpredictable switchbacks, dips in the road, obstacles to be cleared or avoided, moments when I can barely breathe, the path ahead poorly marked - yes, a winding path up a mountainside.  The more I have reflected on this quote, the more validating it has become.  The more helpful it looms for the months ahead.

I don't know the shape of the mountain ahead of us or how far up the path we will make it together, but I do know, without a doubt, that it will be winding and circuitous, in spots even treacherous.  I do know that we can and will take it one step at a time.

*If you found this helpful or know someone who might, please share and like my page.

My Hero

"You must bear losses like a soldier, a voice told me, bravely and without complaint, and just when the day seems lost, grab your shield for another stand, another thrust forward.  That is the juncture that separates heroes from the merely strong."

~ Margaret George, The Memoirs of Cleopatra

I admit it, I'm addicted to quotes.  I can spend hours trolling quote sites whenever I get interested in a topic, but especially when preparing to blog.  And I did so when I decided to post this week on the topic of loss.  Because loss is ever present in our lives these days.  Not just the constant presence of the Ghost of Christmas Future, but the onslaught of loss that John has been experiencing of late.  

I set out to find a quote that might capture the feelings I have experienced as I watch him. My concern as I see him walk more slowly, tire more easily, require still another transfusion.  The sorrow I felt when he recently divested himself of his business, his "baby" that he nurtured for almost 30 years.  The heartbreak of watching him sell his car, accepting that the progression of his macular degeneration necessitates my chauffering.  The loss of stamina and energy, the loss of a piece of his identity, the loss of freedom and independence.  Loss upon loss.  I hate this for him.

And then I came upon the above quote and literally, in the moment, realized that this is how John thinks about loss and that the feelings I need to hold onto are my profound respect and gratitude for how he is managing his.  For he doesn't complain, doesn't even see complaining as a choice.  He takes life a day at a time, reorganizes quickly, and moves forward as best he can with amazing agility and dignity.  

I have often described my husband as resilient or persistent.  Strong.  But now, heroic.  My hero - and he will never lose that.

 

Standing in a Hammock

"So, how was Houston? What did you learn?"  "How is John?" "How are you holding up?"

Today, three weeks since our trip to MD Anderson Cancer Center in Houston, I would answer these questions somewhat differently than when we first returned, having the advantage of hindsight.  First, Houston was in better shape as a city than we had anticipated, remaining water viewed more from the air than in the area of the Center.  The Center itself as busy, as challenging to navigate as ever.  The sight of so many folks in distress as difficult to handle. 

But for us, the fact that they could not get a sufficient bone marrow sample added stress and uncertainty as we had traveled there specifically to check the progress of John's disease.  What we did learn was that currently there were no clinical trials available to pursue.  And that we would have to wait another week for whatever further information could be retrieved from the sample.  The best advice we received was to resume monthly chemotherapy treatments.

I would have said on the morning we left Houston that nothing much had changed as a result of the trip.  And then, in the airport, waiting for our departure, I heard John tell a friendly stranger that he has an incurable cancer and is not sure he will survive another year.  Something I had never heard him acknowledge before, even at times seemed unable to acknowledge.  It broke my heart - and it was such a relief.

For, it has been very challenging for me to hold the reality of this prognosis without impacting his optimism, his conviction that he could endure this long enough for a cure to be found.  That, at least there might be a clinical trial that would provide a better treatment plan.  After all, he beat cancer before. That optimism, however, has been an obstacle to getting our "ducks in a row" should he or before he loses this battle.

Oddly enough, admitting this is a possibility, even a probability has decreased our stress and anxiety.  Rather than be depressed, it has brought us both a sense of calm relief and purpose.  And subsequently, we have adjusted our expectations and aligned behind a commitment we can manage.  We are focusing on three months at a time and a laundry list of to do's that keeps us grounded, energized and in tandem.  

So, how am I doing?  I told someone recently that I'm learning to ride the waves.  "No," she said, "you're learning to stand in a hammock."

And John, well, he recently reminded me that doctors could be wrong.

Hope for the Best; Prepare for the Worst

The first time I heard "hope for the best, plan for the worst" was the morning the man designated to become our hematologist delivered the news that blood tests revealed John had a cancer of the blood and perhaps only six months to live.  

Dr. W. was the hematologist on call the morning after I had driven John to the ER, struggling to breathe. Tall, lanky, soft-spoken, and unassuming - my first thought was of Ichabod Crane. He said as gently as I think anyone could that he thought it could be leukemia, advanced and apparently aggressive. When I broke down in tears, he put his hand on my shoulder and uttered the phrase that I have since inscribed behind my eyelids.

After a second series of tests at MD Anderson, a diagnosis of Therapy Related MDS was confirmed and the prognosis extended to two years. Once again we were told this cancer is incurable and once again exhorted to hope for the best (which would be improved treatment to add life expectancy), but plan for the worst.

It has been a year since that morning I brought John to the ER.  We somehow continue to be hopeful, referring to John's cancer as currently incurable, learning how to work effectively with the clinic, consulting with MD Anderson, adjusting schedules and habits.  All thanks to my naturally optimistic husband.  He, who reminds me he is not a statistic.  He, who declares he will live longer than two years.  

I, on the other hand, at my best could be described as a realistic pragmatist.  On my worst days, as a chronic worrier.  So, I research and note questions for the doctors.  I wake in the middle of the night to make note of something else I need to learn "just in case" or add to our "plans." I try to imagine life without him.  

Historically, we have learned to balance his optimism with my pragmatism, to temper my tendency to worry with his hopefulness, to sustain a healthy tension between our two world views.  But this is new territory. His cheerleading hasn't helped me sleep at night.  And I have struggled to create a sense of urgency without diminishing the sense of optimism he needs to continue to fight.

Then, in the middle of uttering one more time that we needed to remember to hope for the best but also plan for the worst, I realized the phrase had lost its power.  It had become a cliche.  I stopped and asked if John could help me hope for the best, but prepare for the worst.  I asked if we could move from talking about and thinking about and listing to more deliberate action.  Could we schedule an hour every day to check something off my to do list or at least move something forward? 

So - we are preparing.  Can I imagine life without him, no way.  Do I want to, no way.  But for now, at least, there is a semblance of balance again.  We can do both.  We can still hope for the best while preparing for the worst.  

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

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.

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.

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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.