In the Midst of Winter

 “In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there's something stronger – something better, pushing right back.” ― Albert Camus.

As I sit to write today, it is still winter in my new home in upper New York.  In some ways, it feels as though it has been winter for months now.  It is, in fact, almost a year to the day when, at that time still in UT, it became obvious to me and my friends that we should cancel gatherings and practice stay at home strategies to protect ourselves and each other from the corona virus.  In fact, as a friend just reminded me, March 10, 2020 was the last time we gathered to celebrate another friend's birthday.

One year, and here I am.  Looking out across the remnants of several snowfalls, out to a bank of evergreens.  Looking out across a new living space, in an apartment for the first time in over 40 years, typing in a stillness broken only by the sound of of my breathing, the hum of one of the several space heaters employed to break the chill I cannot seem to otherwise dispel, or the creaking of the footsteps of upstairs' neighbors I've yet to meet.  

The boxes of belongings have all been opened, though piles exist in almost every room, waiting for my final decision - do I keep or do I let go?  For I have brought more than I need, more than I can use, and, increasingly, more than I want.  

Rufus has adjusted well, perhaps even more quickly than I did.  He has learned to climb the stairs that I bought for him when I could hear myself question how long I would be able to lift him into bed.  He sleeps there now as I type.  He has become attached to my sister, the main reason I decided to move this past fall.  And no, he doesn't like the snow which is a good thing.  As small as he is and as high as the snow drifts have been, I would have had to dig him out had he gone romping into it.

I would be remiss if I did not admit that this move has been harder than I expected.  For almost two months my belongings remained in Utah while the search for a van driver went unheeded.  For almost two months we lived with my sister and brother-in-law who were generous, loving and supportive.  But for someone who has been independent for over 40 years, these were a long two months.  And for someone who has lived in a house for over 40 years, apartment living has been a challenge to my creativity and an adjustment that is only getting easier now.  

And then there was my birthday, my 80th birthday.  The birthday John and I had talked about in recent years as an occasion to host a big party as we had done for my 50th.  Followed the same week by Valentine's Day.  Alone.  With too much time and space to dwell on past birthdays and Valentine's Days with him, taking the entire week to celebrate, to read the beautiful cards he would send, cards I came upon opening the last box.

Then, yesterday, a message from someone I hope will become a new friend calling me amazing for having the courage to move across country, by myself, at this stage of my life.  So, I took pause to let that in.  To write in my personal journal this morning all that I have accomplished since moving in.  All the boxes unpacked, all the services I have found, the hard decisions I have made, the many ways I've reached out to stay connected, the new ways I am using technology, the environment I am creating to sustain and nourish myself and my little Rufus.

I also took time to acknowledge all the help I've received - from  the staff in the leasing office and the young handymen who put together shelf upon shelf and took apart box after box, to new insurance agents and clerks in the grocery and hardware stores, and strangers who, hearing I am new to the area, have been warm and welcoming.  Mostly, to my sister and brother-in-law who have welcomed me with open arms and generous hearts and to all my friends who call and Skype and Zoom and send notes to remind me that I really am not alone.

So, amazing?  I'm not sure.  But strong, yes.  Courageous, yes.  Creative, yes.  Determined, yes.  Optimistic, yes.  And certainly, blessed.

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.

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?

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

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.

  

If I Ruled the World...

"If I ruled the world,

Every man would be as free as a bird

Every voice would be a voice to be heard..."

~ Cyril Ornadel, Leslie Bricusse  

This has been a tough week.  I have watched with dismay as this President signs executive order after executive order that I disagree with.  I have serious concerns about his mental health and the agenda of many of the people he surrounds himself with.  I can't believe that the interference of a foreign government, let alone Russia, hasn't raised more of an outcry nationwide. I have watched demonstrations that remind me of the divisiveness of the 60's that tore apart our families and communities.  I fear our very democracy is being eroded before my eyes, fed by the beliefs of a small segment of our population with little regard for the needs or values of the larger whole, even blatant disregard.

I want to think "we are better than this."  But that belief is being tested almost everywhere I look.  When lies are called alternative facts and people brag about posting false stories, when basic Constitutional rights (freedom of speech, freedom of the press and freedom of assembly) are threatened, when I see resistance that looks as ugly as that which is being resisted, when I see and hear behavior I would have chastised a 10 year old for, I am at best stunned, at worst saddened and afraid.  So....

If I had my way -

• we'd challenge our generalizations - not all Republicans support this president and his policies; not all Muslims are terrorists; not all Christians are Evangelical; not all Democrats are Progressives; not all Pro-Choice supporters advocate abortion; not all voters who didn't vote for him voted for her; not all who voted for him are racist, etc., etc.
• we'd "seek to understand, then be understood" - whether in personal conversation or on social media, we'd ask more questions for clarity; consider at least a point, if not the entire perspective, that is being made; provide feedback for understanding (even if not in total agreement) before countering with our own points of view.  
• we'd move beyond blame, especially overarching blame of a single group of people - there are many factors that contributed to the outcome of this election, many groups that can be pointed to for the roles they played or didn't play; we'd do well to remember that blame elicits more defensiveness than ownership.
• we'd tamp down the flames of hatred rather than fan them -  name-calling, profanity, insult, ridicule and rudeness are running rampant; hatred is being justified by anger; respect is being demanded without being given; "argument turns too easily into animosity; disagreement escalates into dehumanization." (George W. Bush) 
• we'd be as aware of our own biases, as much as we are the biases of others - President Bush said it beautifully in Dallas, "too often we judge other groups by their worst examples, but judge ourselves by our best intentions."  I also would add that too often we justify with single anecdotes rather than patterns of behavior, belief rather than fact.
• we'd do our homework - we'd learn from history - ours and that of other countries, understand how easily populism morphs into Fascism, what trade wars can do to an economy, how easily the fabric of a society is torn apart and how long it takes to sew it back together again.  We would demand more than platitudes and slogans, proof and plans, not mere promises; personal character would be as much a criteria for success as wealth is.
• we would be engaged citizens - we'd understand how our government is supposed to operate; we'd understand something about basic economic theory; have some knowledge about the rest of the world; at least we would vote...and rid ourselves of the gerrymandering that has contributed to the belief - and in many cases, the reality - that our vote doesn't matter.

But most of all, we'd look for ways to pull together, rather than divide further - we'd seek compromise, solutions that work for the largest segments of our population, not just a single segment or group.  Next month I will be 76.  Although I am concerned for my own future should this regime impact Medicare and Social Security and health care as they promise to, I am not going to be here in 15 to 20 years, maybe less than that.  But my nieces and nephews, my grand-nieces and grand-nephews will be.  If I had my way, they will enjoy the opportunities I did.  They will live in an environment of clean air and clean water.  They will feel safe to express their political views, to practice the religion of their choice, or no religion at all. 

I know I will never rule the world.  But at least, I can still hope "this is not who we are."

This Much I Have Learned

"In the middle of every difficulty lies opportunity."

~ Albert Einstein

 I have kept a personal journal for 40 years now, my own unedited, politically incorrect, safe confessional.  I  periodically have gone back to review a volume or two, sometimes out of mere curiosity, sometimes - as this past week - because I want to see if/what I have learned. Not surprising I'm sure that I would start with the most recent volume whose first entry was Sept. 1, three days before the ER visit that led to John's dire diagnosis.  

This much I have learned - in no order of importance -

• that Einstein was so right.  This challenge is the opportunity for many things.  Like learning.  I know more today than three months ago.  I know more about his disease. I know more about John.  I know more about myself.  I know more than I want to know about navigating the health care system, even a good one. 
• that even though John and I have battled cancer twice before, I did not appreciate or respect his courage and resiliency as much as I do today.  He is my hero.
• that just because we fought this fight before, we have had to acquire new knowledge, new skills, new attitudes for this particular battle.
• that the most important role of caregiving may be that of advocacy with the individuals and institutions on whom your loved one's survival depends.  And that that role calls for skill, patience, tenacity and above all, fearlessness.
• that I am a great advocate! 
• that support and help can come in the most creative ways, from the least expected quarters, and take your breath away.
• that we have an incredible network of support here.  And that knowing that has removed a source of worry for John.  He knows I would not be alone.
• that the very differences between John and me that have at times been the source of disagreements and stress, harnessed, are the source of our strength, resiliency and endurance.
• that one of the biggest challenges for me is to stay present and not leap into an unknown, frightening future.  And developing that skill, though difficult, may be the biggest opportunity for me, the one that will impact the very future I worry about.
• that I need to take care of me as well as John.  I sometimes do a better job at the latter than the former.
• that it takes constant conscious attention to maintain a healthy tension between realism and optimism.  And between enjoying the present and planning for a future we may not want.
• that this time is bittersweet.  The bitter - his frequent need for transfusions; the reality that this is currently incurable; watching him give up so many things he enjoys; observing his fatigue; the vigilance needed to prevent infection, etc., etc.  The sweet - deeper communication; greater and more frequent expression of affection and respect, not only between us but for us; a stronger partnership than we've ever had, etc., etc.  And that the sweet does not negate the bitter, nor vice versa. 
• that a sense of humor is more valuable than I ever realized.  Thank heaven John has a good one.
• that simplifying our environment and our routines isn't about losing anything.  It's about gaining time and space, calm and serenity.
• that, while others can and will give you advice, everyone handles a crisis like this in his or her own way.  And what may work for you one day may not the very next.
• that I have a whole new respect for the chronically ill and their caregivers.
• and that, though I have learned a lot, I know I have so much more to learn.

Last September I decided to share our journey here in the hope that what we are experiencing and learning along the way could be of value to others who are or will be in a similar situation.  I hope this is so.  And to all who are following this and perhaps sharing it with others, thank you.  And Happy Holidays to all.

A Three-Legged Marathon

"We take the hill for a better view of the next hill and the gear we'll need to take it as well."

~ Pamela King

It's taken a few days of recuperation and this message from Pam to realize that, though our trip to MD Anderson was a challenge, it was the first hill and we took it.

At times, it felt like a mountain.  Physically - just getting to Houston from our small community in Utah took almost 10 hours. Pushing John's wheelchair across the walkway between our hotel and the main building, and in and out of elevators, and up and down corridors was exhausting. For John, being poked and prodded, having another bone marrow biopsy, another blood transfusion took their toll.

And then emotionally - waiting for doctors, waiting for lab results, waiting for a glimmer of hope.   All the time surrounded by others in waiting.  This time we were struck by the number of young patients, in their 20's and 30's.  Surrounded by an epidemic of cancer.

But along the way the glimmers appeared, what Pam calls morsels of hope.  In the kindness of strangers who pushed the wheelchair up ramps I couldn't manage or who went out of their way to open doors with card passes we didn't have.  In the consideration and professionalism of every person we met, from housekeeper to waitresses to clerks and ancillary personnel.  We always were treated with dignity and respect. And in the courage, strength, and determination we saw exhibited day in and day out.

Two special moments stand out.  The first, when we met with the physician who gave John his stem cell transplant 11 years ago.  In our past experience, he was cordial and the ultimate professional, perhaps a bit contained.  This visit, he shared a different and more compassionate side of his personality, touching us both when, as we left, he reached over, placed his hand on John's shoulder and said, "Remember, you're tough."

The second moment, on our last day, a follow-up visit with the hematologist to hear the results of the bone marrow biopsy.  She had already confirmed the original diagnosis - Therapy Related MDS - and was leaning toward the same prognosis of six months to a year.  She had agreed with the proposed treatment.  So, when she arrived with a big smile, I dared to hope there could be some good news, any good news.  

I think she was as happy to give the news as we were to receive it.The bone marrow results indicated the disease is not as aggressive as originally thought.  The prognosis - two to two plus years.  Enough time for better clinical trials.  Enough time for breakthrough treatments to surface.  

So, the next hill is before us. John is in the middle of his first treatment cycle and so far, so good.  I am in the middle of researching the gear we need to take the hill.   How to detoxify our environment, as infections could be catastrophic.  How to reduce salt and sugar in our diet. How to enroll him in drinking more water.  What to do in case of an emergency.  How to pace ourselves - for this is a marathon, not a sprint!  A three-legged marathon.

Out of Crisis Comes...

"Often out of crisis comes this enormous wellspring of generosity and motivation."  

~ Josh Fox

We know from past experience the truth of this quote.  I retain many of the 100+ angels that were sent to me when I had cancer.  Although I am a confirmed agnostic, I do believe that the prayers offered when John battled Non-Hodgkin's Lymphoma, contributed to his survival, if nothing else, because he knew he was being supported, even by people he did not know.  And that contributed to his will to survive, in spite of a poor prognosis.

Even with our past experiences, we are profoundly touched by the outpouring of concern and offers of assistance we are receiving from across the country.  Many have asked what they can do to help.  I know there is plenty of advice out there that you should just do what you can because people in the midst of crisis often don't know what they need.  We certainly don't know the extent of what we might need yet.  

Some folks have gone through a challenge of their own and have a sense of what might be helpful.  A card from old friends who had heard our news through the grapevine came unexpectedly and that was touching.  Several friends have sent well wishes and prayers - always welcome.  A friend and a family member who have special medical expertise continue to provide translation of medical terms, insight into possible treatment, and research into other options.  Another who knows me well, knows how I tend to think and react, is a good sounding board as I contemplate important decisions.   Sometimes, a simple offer...like "what would make the day easier today and can I get or do that for you", as one dear friend recently queried, may be the sweetest gesture in and of itself, needing no response other than thank you for the offer.  And anything that brings a smile, or better yet a laugh, is a treasure.

But it is more than fine with us that you offer and then wait for our requests.  We are leaving tomorrow for MD Anderson in Houston. We will make more specific requests once we have more information.  For now, your prayers, moral support, positive thoughts and wishes are deeply appreciated.

It Is What It Is!

"A crisis is a terrible thing to waste."
~ Paul Romer

We are facing a health crisis as great, if not greater, than any we have faced before.  We do not yet know the full extent of this crisis other than what we have just learned from the preliminary results of John's bone marrow biopsy.  He has been diagnosed with a rare blood cancer that will require further information as to prognosis and treatment.  We do not have a clue as to what good could come from this.  But we do trust that something will.

It is out of our desire to create something good from this crisis for ourselves and for others that John agrees we should share our journey here.  Not that we intend to share intimate details, or rage against the universe, or wring our hands in despair. For it is what it is. But this is a blog about aging, and medical crisis and how one deals with it is one of the most challenging aspects of aging I observe. And am now experiencing.

So, in the weeks and months ahead I will be sharing the lessons we are learning, hoping that they will be of help and support to others who are faced with a similar challenge. And hoping you will share with us also - questions, comments, the lessons you've learned.  Let's learn together.

I Am Not a Luddite!

"I hate to say it, but I come from an era when we weren't consumed by technology and television."

~Jimmy Buffett

I come from the same generation and don't hate to say it. Having recently returned from a trip to Santa Barbara, my first flight in almost two years, I saw signs of folks consumed by technology, glued to cell phones and computers, rarely noticing their surroundings whether sitting in the airport, walking down the street,  even across from tables in restaurants.  To a degree that I found confusing and disconcerting. So much so that my reactions have remained with me since my return, hovering like an incipient headache.  

Before I share my observations and my concerns, a disclaimer.  As a member of one of the last generations to remember ice boxes, party lines, and wringer washing machines, the humid heat of Midwestern summers before air conditioning and hanging clothes in the basement in the winter, I  appreciate the modern conveniences that technology has produced. I wax lyrical over small appliances - love my Keurig coffee maker, thank the inventor of the electric can opener- and there must surely be a place in heaven for the creators of the microwave.  I have a cell phone, enjoy my Kindle, e-mail, Skype and use Facebook.  In short, I am not a Luddite.

I am, however, also not a techie, nor do I desire to become one.  Because as a member of my generation,I also remember the joy of receiving a handwritten letter and the pleasure of long conversations with a friend.  I had fewer friends, but I knew them, had a shared history.   I listened to the radio, played board games, pursued hobbies. The family doctor came to my home and didn't push prescriptive drugs.  I didn't have to ask people to put their phones away or look at me when I talked to them.  The bullies on our playgrounds had faces and names.  Information came into my world at a pace I could digest, understand and discuss in depth.

So, I would rather discuss a problem in person or over the phone, (a land line preferably); I will not bring my cell phone to a meal and don't instant message.  I journal my most private thoughts in a  notebook using a ballpoint pen.  I tape tv programs so I can eliminate the constant barrage of commercials suggesting I may need a new drug that I suspect will be recalled within a couple years for its side effects.  Increasingly, I choose to listen to music or read a book, a real book, or pursue a hobby. 

It can be argued that my generation doesn't need all the networking technology or that because we're retired, we have the time to write letters, have long conversations.  Or, as too often is the accusation, that we are afraid of the technology or too old to learn new tricks.  I maintain that some of us are making conscious choices, to communicate deeply, to take charge of how we spend time, to curtail the distractions, to control technology rather than let it control us.  

We don't need to defend this choice.  Or apologize.  Indeed, we may be one of the last generations to understand it is a choice.