Tuesday, February 13, 2018

Random Acts of Kindness

"Unexpected kindness is the most powerful, least costly, most underrated agent of human change."
~ Bob Kerrey

I woke this morning to a damp and dreary day. A good day to rest, read, and reflect - especially since we are still recouping from our recent trip to MD Anderson Cancer Center.

This trip can take a lot out of us. It's not just that air travel has become more difficult. It's also the emotional stress of not knowing what we might hear from the hematologist, the physical stress of pushing John everywhere in a wheelchair, the physical stress for him of yet another bone marrow biopsy.  And when we're done, managing another day of travel and our morale for at least another week until we receive the biopsy report.

We've made this trip three times within 17 months. Each with a similar routine, yet each yielding radically different reactions. The first visit we met with the hematologist assigned to us, an austere Russian trained research physician, whose honesty bordered on bluntness, a shocking confrontation with reality while we were already shell-shocked. By our second visit, she was warmer, gentler, but the news she delivered still bleak and unpromising. Still no cure on the horizon. No appropriate clinical trials available. And her concern for John's appearance disconcerting. The biopsy took two attempts, and the results still were inconclusive. Overall, every bit as challenging a visit. Maybe even more so.

It was a surprise, therefore, when we both affirmed as we left our accommodations that this trip was a much more positive experience even though we couldn't pinpoint why at first. Yes, our doctor was even warmer, more personable, more patient with our questions, clearer with her answers.  But still no cure, no appropriate clinical trials. The biopsy went smoother. But still no results yet.

And then it hit us in the airport as someone offered to help with our luggage. This what was different. The constant stream of kindness that had enveloped us the entire trip. People who lifted luggage without being asked. People who held doors and offered help with the wheelchair. People who not only gave directions but walked with us to be sure we were headed the right way - and not because they were paid to do so. People who smiled first. People who genuinely seemed pleased to see us and willing to listen. People who reminded me with every gesture that there are wonderful, kind and decent people all around us.

Simple, unrequested, unexpected acts of kindness. I'd like to think I would always be aware of and grateful for them. But I suspect they have meant so much more because I am so much more aware of our fragility, so much more susceptible to cynicism and despair. Powerful, inexpensive but not underrated in this household.

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


Monday, February 5, 2018

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.

Saturday, January 13, 2018

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.

Wednesday, December 20, 2017

It Was a Very Good Day

"How beautiful a day can be when kindness touches it."
~ George Elliston

I made a promise to myself at Thanksgiving that this holiday season, possibly our last together, would be one of our best, something for John to brighten his days, something to cherish for the rest of my life.  I made lists of possible activities, moments that could qualify as special, places we enjoy, meals I'd prepare - and I don't like to cook.  That weekend I took extra care to create festive touches in every room, even the bathrooms.  I spent an entire day just on the Christmas tree.  And crossed my fingers, hoping that my vision would become reality in the following weeks.  Hoping I'd hear him say that this was the best holiday ever.

Then, unexpectedly, unplanned, the telephone call from old friends, friends of three-plus decades.  Friends whose wedding we stood up for 32 years ago, friends whose conversations pick up where they left off even if months go by without contact.  Could they come out for a visit?  

They arrived last week.  And we did what old friends do - got caught up on each other's lives, shared wine, ate out, gossiped, laughed, reminisced, offered help without being asked for it, wished we lived closer.  And each of the three nights they were here, John commented to me, "This was such a nice day."  

Each day was a nice day, but I will cherish one in particular.  The two men went off for the day, a special treat for John, a day to spend with this man who in many ways has been as much a younger brother as a friend.  A chance to say things he might not say to me for wanting to protect me.  A chance to say what each needed to say in case this would be the last time they saw each other.

And they did just that.  When I asked John what they had talked about, at first he answered simply, "Love."  And then, "Of our love for one another and our special bond and how much I have touched his life." And then, "I cannot tell you what that meant to me.  To know I made such a difference to such a good man."  

There are other memories to create this holiday, but we have already had our Christmas.  John's days are brighter, I will always remember our conversation and cherish the man whose kindness and support made it possible.  A very good day, indeed.

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

Monday, December 4, 2017

Reflections on Christmas Past

"Christmas is a season not only of rejoicing but of reflection."
~  Winston Churchill

I woke the other day with the sudden realization that this is my 76th Christmas and a flood of childhood Christmas memories washed over me.  For no apparent reason.  No dreams that I could recall.  No family traditions binding me to the past.

Then again, I have been decorating with a vengeance and friends have called to say they will be visiting.  And I have indulged in more than a few Hallmark holiday movies.  You know the ones, filled with romance and fantasy, ideal families and happy endings.  Simple plots and enough good cheer to last all year.

Our family was not filled with good cheer.  Money was tight. Relations could be strained.  But, somehow, we were at our best at Christmas.  

I loved watching my mother bake cookies for weeks starting right after Thanksgiving.  Enough chocolate chips and pecan snowballs, Spritz and sugar cookies, pinwheels and ladyfingers to fill the turkey roasting pan and several large bowls.  All made with real butter and leaving an aroma that filled the house for weeks.  Enough to give packages to all the family who came to visit.  And they came - all six brothers of my dad, and the two brothers and a sister of my mom, and their children.  They flowed in and out for days.

I loved decorating the real tree, purchased only a week or so before the holidays and laden with family heirlooms and silver tinsel that had to be layered a string at a time - I remember feeling so grown up when I was finally allowed to do so.  And the cards, checking the mail every day to see if we received a card from someone Mom had sent one to, her cards signed in red ink for the season.  She would read them, looking for a message, and then tape them to the archway to the living room.  And count them, every year.

The other sure sign of the season - the music.  Not only did Mom enjoy the traditional Christmas carols, (well, I think Rudolph was tolerated), but once we attended Catholic school, I sang in the church choir.  And Midnight Mass was the second time Dad could be dragged to church, Easter being the other.  Such a treat to get "dressed up" and sing before my parents.

And of course, the food.  Both Mom and Nonna were great cooks.  We celebrated Christmas Eve with Nonna who made pizza, from scratch naturally, and fried the leftover dough and rolled it in sugar, a treat for the grandkids.  Then, returned for Christmas Day to a feast that took days to prepare and almost as long to clean up after.

Gifts were simple - coloring books and crayons, puzzles, roller skates, a game.  And always pajamas and for me, and later my baby sister, a dress that Mom sewed.  Gifts that appeared while we were at Nonna's.  Gifts that I discovered Mom and Dad had bought when I finally noticed that Santa's name was always signed in red ink.  Gifts that were given and received with love and appreciation.

We were at our best at Christmas.  I think I'll bake cookies this year.

Sunday, November 19, 2017

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.


Sunday, November 5, 2017

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.