Friday, September 15, 2017

When You Need Somebody - Part I


"Tell us - from friends, loved ones, and even acquaintances- what does help/support/relief/kindness really look like?"

I've been mulling this question from my friend, John G., for the past few days.  He suggested the answer might make a good post here.  After giving it a lot of consideration, here's my first attempt.  Not a definitive description because I don't think there is one.  At least I don't have one.   What I will share, for now,  is what I am learning about support.

~ What support looks like not only varies from person to person but also for any one person, depending on the challenge and when it appears.  When John was battling non-Hodgkins, we lived in Houston, in an apartment near the hospital.  I didn't have to cook or clean and we were 12 years younger.  I needed very little physical help as compared to today.  But I could have used more emotional support; maybe I just didn't understand that I did as much as I do today?

~ There may many people who will offer to be of help, and though some may offer only as a courtesy, no one is a mind reader.  Unless someone knows you very, very well, they cannot know what you might need and what you will accept. Even if they know, a new situation may require a level or kind of support neither of you recognizes.  I've found it helpful to me and those who would support me to list all the ways someone could help me physically, intellectually and emotionally.  It led me to make many requests I would not have otherwise - asking our window cleaner if he would take down all items from upper shelves so that neither of us needs to use a ladder anymore, replying to a friend who asked me what could lift my spirits that day -"flowers", or to another "a regular luncheon date at a spa."

~Which brings me to my last point (for now), and perhaps the most important - support, help, assistance, however you refer to it, is as much related to whether or how well you accept it as to whether or not it is offered.  In the past, my pride was an obstacle to receiving the support I wanted.  Sometimes, I thought it a sign of weakness or incompetence to admit I needed help.  Sometimes, I'm embarrassed to say, I thought I could do it all or better. Experience has taught me otherwise. Sometimes I just didn't know what I needed. And sometimes, even today, I get too overwhelmed, too caught up in anxiety and fear to even recognize what is being offered.

Well, John, my friend, your question has instigated some serious thought. I recognized even as I started to compose my reply that there is much more I want to add - so there will be a Part II.  In the meantime, I welcome comments, questions, and other ideas.  Support each other?  What a wonderful idea.








Sunday, September 3, 2017

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.  













Wednesday, August 16, 2017

Little Things Mean a Lot



Recently, I posted on Facebook -

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

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

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

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










Saturday, August 12, 2017

I Hope Life Has Been Good to Her


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

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

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

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

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

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

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

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




Wednesday, August 2, 2017

Illegitimi Non Carborundum


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

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

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

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

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

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

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

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

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








Saturday, July 22, 2017

The Zen of Jigsaw Puzzles


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

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

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

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

Patient, calm until finally done.  

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

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

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

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


Friday, July 14, 2017

Help Wanted


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

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

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

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

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

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

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

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

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

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