Time to do What You Love
  • Home
  • What is it?
  • What Next?
  • Susan Says
  • From the Attic
  • Login

FINALLY AT THE TRAILHEAD

12/2/2016

4 Comments

 
Picture
FINALLY AT THE TRAILHEAD….

This is what I say when Lee gets discouraged.  When he’s feeling weak, when the insane medication cocktail he’s required to consume makes him gag and shake, when food continues to be completely unappealing and he’s lost another pound today -- I say, “We’re finally at the trailhead.  We can’t set out yet, but it’s getting closer everyday.”

First we have to pack -- pack a few more pounds and some muscle strength on Lee.  Get his medications balanced and reduced from twenty plus in the morning and almost that many before sleep.  We have to wait a while yet until his body is sure about welcoming this unfamiliar heart, and we can begin to ramp down from four or five outpatient appointments a week to three a week, then one a week, then one every two weeks.  It will be at this point where it will make sense to leave our Noe Valley haven and hit the road again.

We’d both love to leave today.  We spend hours pouring over maps and watching videos of other people setting out on adventures in forests, canyons, caves and deserts.  We have a growing wish list of supplies we’ll want to order as the time grows closer.

We spent five months not knowing whether this heart transplant odyssey would keep us locked in place for a few more weeks, a few more months or even a year or more.  NOW we can almost smell the pine needles and see the sunsets on the insides of our eyelids.


We’re finally at the trailhead...

4 Comments

TWO WAYS TO LIVE YOUR LIFE

11/27/2016

1 Comment

 
Picture
“There are two ways to live your life:      
One -- as if there are no miracles.

Two -- as if everything is a miracle.”
Author unknown

Lee Strong has many dreams and a restless yet purposeful nature to support their pursuit.  If you condense all those dreams, you arrive at a fundamental purpose:  To be a better man.  That is -- to love deeper, to dream even bigger, to lead more people to believe in themselves, and most definitely to have more FUN.  We both know that life has hurdles to clear -- or to crash into and then get back up -- and that life is also supposed to have multiple finish line victories and as much wonder as we can pack in.

To be continually in the process of becoming a better man is a BIG primary dream.  It’s clear that earning and welcoming this new heart is preparing Lee for the next quantum leap forward in becoming a better, and better man.

It’s also clear that Lee is -- that we both are -- getting some incredible assistance.  In fact, these assists -- these boosts in the directions of our dreams -- are so unlikely and so frequent that they cannot be delegated to coincidence or serendipity, and certainly not to luck.

This steam locomotive of thought just pulled into the station:

What are miracles but occurrences that most people might call  impossible?  I’ve heard it said that God can do the impossible, and also that “God is love.”  All cultures assign omniscience and omnipotence to their deities.  Can we deduce that Love is a God who performs miracles?  

My personal belief is that the source of all miracles can only be love powered by faith in the impossible.  

When Lee and I began to list our miracles, we counted anything that MOST people would deem as veering heavily towards “impossible” on the Probability Scale.
As these statistically “impossible” things occur, Lee and I are continually asking each other, “WHAT are the odds?”

Strange that we were never surprised by these beat-all-odds occurrences. We do feel a sense of wonder and most definitely express gratitude for each one as it sails on in.

Okay -- reality check!  Although of late we’ve been experiencing a virtual cascade of miracles, it’s not always that way.  There are intermittent episodes of pain, fear, discouragement and some very occasional bouts with anger and doubt.  This heart transplant journey is one of life’s tunnels of fire.  There’s no gliding on through without encountering innumerable speed bumps and potholes -- with the occasional “BRIDGE OUT AHEAD” moments.

It would be necessarily to grow through several experiences as intense or even more intense than a heart transplant to maintain the Buddha’s seamless serenity through the terrors, indignities and drug-induced moods swings of major surgery.

It’s precisely because of these intense experiences that Lee can decide to be transformed rather than defeated.  As excruciating as it is traversing this gauntlet-- or a different obstacle course just as intense -- this is how true life warriors are made.

When I see Lee’s signature grin go into hiding and his brow furrow, I say to him, “Oh no! Struggle face! What can we change?”.  But there’s an underlying certitude that Lee Strong will be emerging once again from the chrysalis.  I believe that his metamorphosis will stun us with the brilliance of his wisdom and the beauty of his flight.  

Let’s get down to defining and quantifying … if it can be done! We’ve been the recipients of so many miracles that I’m sure we’ll miss many.  Here’s what we can come up with right now -- in no particular order:

Miracle number one:  We were literally across the street when the call came in that Lee’s new heart was here.  The LVAD* Team had cleared us to travel up to a distance of 6 hours travel time away from the hospital. We hadn't gone that far yet- only about three hours away.  We had talked about a trip to hike at Land’s End that day, but no, we were one MINUTE away when the call came in:  “Your heart is here!”                   *Left Ventricle Assist Device or heart pump

Miracle number two: Lee wasn't even on the 1A list for a heart yet. He was still on the 1B list waiting to be given a 30 day shot as 1A (top of the list).  People simply accruing time on the 1B list can wait many months or even years for transplant. We waited five months.  We know people from the hospital support group who have waited 13 months, and one who waited six years.  This means that this new heart was the perfect heart for Lee and the perfect heart for no one else who was waiting.

Miracle number three:  When you first begin this process, all potential transplant recipients are asked to sign an agreement to consider a “compromised “ heart.  This would be a heart from someone with no medical record or with a less than perfect medical record (hepatitis, AIDS, etc).  Normally, these conditions do not affect the efficacy of the heart, but there are no guarantees. Signing this agreement is strongly recommended because there aren’t enough hearts to go around. We signed, and so, I felt a great burden lifted when our surgeon, Dr. Wieselthaler, told me that Lee’s new heart is “pristine.”  Beautiful word “pristine”!

Miracle number four:  Lee is recovering so quickly and so smoothly from the transplant surgery that he tied the current record on speed of discharge -- nine days.  The average hospital stay after a heart transplant is 24 days.  No, it’s not a contest, but it did seem an indication that this new heart is extraordinarily happy in Lee’s chest.

Miracle number five:  Lee received his heart NOW, not almost 16 years ago when heart transplant was first proposed for him.  He was able to avoid transplant because he had textbook performance from the meds they prescribed back then, and has suffered almost no symptoms over the past 15 years.  There hasn’t been a single cardiologist that hasn’t been amazed that Lee’s heart suspended its inevitable deterioration for so long.  In 2001 the surgery for transplant and the post-transplant medication brew was much less sophisticated and much more challenging for the patient.  The mechanized heart assist devices back then were the size of refrigerators and hospitalization was mandatory.  Lee wouldn’t have made it to transplant without the LVAD, but his device was the size of a camera bag, and, miraculously, he lived a normal existence with the small assist device implanted in his chest.  Lee had a drive line leaving his upper abdomen that was attached to a small purse-sized bag containing the controller and batteries moving about 6 liters of blood through his body every minute.  He wore this bag over his shoulder like a camera bag and I carried a backup and extra batteries.  There was no hospital confinement, no restrictions at all except immersion in water was prohibited.  We took three ferry rides and many train rides to see friends and family and to explore San Francisco. We even resumed building our business about six weeks into the recovery process.  Lee’s enlarged, extremely friable former heart waited -- time-traveled in stasis -- until heart pump and transplant science had made a quantum leap forward.

Miracle number six (These are definitely not in chronological order!):  We have a little haven in the city 20 minutes from the hospital, and the rent is one third San Francisco’s current inflated rate.  Not to mention that no lease was required and our pleas to be allowed to pay for utilities have fallen on deaf ears.  How did this happen?  Our nephew had the courage to ask the woman he was dating if we could move into her recently vacated basement studio, and she had the generosity to meet our budget and help out innumerable other ways as well.  Now that our pharmaceutical bill surpasses our rent, this is greatly appreciated…  Jessica and our nephew Joey were the first of our many San Francisco angels.

Miracle number seven (travelling back through time):  Last March we began to give away, sell, donate nearly everything we owned (2 cars, 1 truck, contents of a 3 bedroom home and a large detached office.)  We accomplished this in record time.  After only 6 weeks of divesting, we moved into our RV and hit the road in early April.  Six weeks later Lee’s heart began to fail in earnest.  Seems like misfortune to just dip our toes into our big dream of wonder and adventure and then be yanked into an entirely different reality?   NO -- what would we have done with our home and everything else while we spent these many months in San Francisco to wait for and recover from a heart transplant?  We had no idea what was coming but it turned out that a light “backpack” has been a tremendous advantage in climbing this medical Everest.!

Miracle number eight:  Lee and I decided to get married almost three years ago --- despite the advice of financial counsel.  I can’t quite recall WHY it’s not always financially advantageous to get married in your sixties -- but we decided we weren’t listening to any of the reasons TO get married (ecumenical or business credibility OR medical) and we certainly weren’t listening to reasons NOT to get married.  We wanted the ONLY reason we made this leap to be that we are living the greatest love affair of all time.  (No one has to agree with this statement but the two of us).  Because I was officially Lee’s wife, it was never questioned that I would be at Lee’s side -- even that terrifying night in the Intensive Care Unit as five nurses leapt around his room trying to load enough blood into him to replace all that was spilling out after his first surgery.  Being married gave us immediate credibility and automatic access.  

Miracle number nine:  We’ve each had roughly 25 years of attitude training -- to always visualize the best outcome, to listen, encourage and celebrate, to pivot when discouragement creeps up on us.  There could not have been better preparation for  this odyssey.  Rarely a day passes that Lee and I don’t express gratitude for this culture of positivity we’ve inhabited for so long.  We’ve been carried by the books we’ve read, the audios we’ve listened to and the people we’ve associated with -- not only through the surgeries and the recoveries, but during the evaluation process.  Heart transplant candidates are evaluated on attitude as much as on physical condition before being accepted for consideration.  They are looking for someone who will make good use of such a great gift, who will persist, overcome and contribute in some way.  What a miracle that we were both so thoroughly prepared for something neither of us could anticipate.

Miracle number ten:  Lee’s new heart is thumping along so strongly that it sometimes keeps him awake at night.  It’s been so long -- over 16 years -- since he could hear his heart unassisted by a stethoscope or ultrasound that this, too, qualifies as a miracle.  Our nurses gifted us both with a stethoscope so that we can listen to this miracle any time we want.  We’re wearing those stethoscopes out!


To be continued…. We have no doubt.  After all, “EVERYTHING is a miracle.”

1 Comment

LOOKING AT WHAT'S RIGHT

10/13/2016

0 Comments

 
Picture
Many years ago when my son was diagnosed with dyslexia, a woman I respect greatly counseled me to be on the alert for people who might make Duncan feel like he needed to be fixed -- and to be very sure I wasn’t one of that number. She was another educator with a learning-different child of her own.

Yes, there needed to be strategies to help him navigate the expectations of an educational system that is designed for auditory and visual learners -- those who read fluently and memorize efficiently.  At the time it was also a system designed to divert him from his real gifts -- drawing/painting/video production -- in order to address his “deficiencies.”  In other words, we were always being told that he would be pulled from art class to take remedial reading classes.  This was my cue to start the paperwork to transfer him to a different school.  The price to “fix” him was too high;  the price to fix him was to take away the primary activity for which he was celebrated.  

I transferred Duncan three times during his elementary and high school years.  It was a lot of extra work -- and extra driving time -- but Duncan had teachers who found ways to let him shine, both in his artwork and in his contribution to classroom discussions.  In the areas where he needed support, these teachers understood that they didn’t need to dumb down the content.  They just needed to help him with the mechanics.  

I was referred to a tutor who had photos of famous dyslexics all over the walls of her in-home classroom:  Steven Spielberg, Whoopi Goldberg, Mohammed Ali, Magic Johnson, Winston Churchill, Albert Einstein, Pablo Picasso, Tom Cruise. Leonardo da Vinci -- and she made sure that Duncan knew that he too had an exceptional brain-- not a sub-standard one that needed to be fixed.  She was his cheerleader, and because he was celebrated for his strengths, he improved steadily in those areas that were a struggle for him.

I can still feel my temperature rising when I recall the day a letter arrived from his high school recommending an extra course in making change, so that he could work at fast food restaurants; “After all, we all have to be productive members of society.”  They might as well have written, “Here, we have this box we can put you in (literally), and then the problem-that-is-you is fixed.”  Many times -- after Duncan had completed his B.A. at an excellent college, the San Francisco Art Institute -- I contemplated sending an announcement of completion to the authors of that letter.  My more evolved self decided on a letter of gratitude to his tutor instead.

Years ago when I was teaching, there were always a few parents who would come in for their conference braced to hear how we were going to lower the hammer on their underachieving or misbehaving offspring.  I always asked the same question:  “Where does your child shine?”  Whether it’s soccer or art, video games or the harmonica, a child needs to feel celebrated in order to be open to change.  Someone with high self esteem is more productive  -- and much easier to be around.

Consider the emotional bank account concept introduced in the book, 7 Habits of Highly Effective People by Steven Covey.  Covey explains that the emotional bank account is based on trust rather than money.  Withdrawals come in the form of criticism, public castigation, any form of abuse and not keeping commitments. Deposits come in the form of praise, celebration, willingness to say you’re sorry and always doing what you say you will.  When you’re making more deposits than withdrawals into someone’s emotional bank account, the relationship is strong and harmonious because both parties feel good about themselves and about how the other sees them.  Trust is fertile ground for growth -- both growth of the relationship and growth of the individuals.

It’s not uncommon in couple relationships for one party to set out to “fix” the other.  Maybe it’s the woman who feels she knows how her mate should dress, earn and recreate.  She is the arbiter of correct standards, and she sets out to mold him to these universal (she believes) specifications.  Maybe he has a gift for gardening, playing the guitar or running marathons.  Maybe where he really shines is in making other people feel important.  She admired his strengths and talents when they first got together, but now she is focused on the ways he falls outside her image of how her mate should be -- how loudly he talks on the phone, his propensity for letting the grass and late charges grow, his devotion to football and beer...  

When Lee photographs a bee on a flower, the flower and the bee are distinct in the finest detail, but the background is fuzzy and indistinct.  That’s what happens when our hypothetical woman focuses with great concentration on her mate’s perceived flaws;  What isn’t right is clear and distinct and larger than life.  What is right -- where he shines -- fades into a fuzzy, indistinct background.  His gifts are denied center-stage.  Rather than feeling celebrated, he feels like he can’t do anything right.   The more withdrawals she makes from his emotional bank account, the more distance he wants to put between them and the more resistance he feels to changing whatever behavior is disturbing her.  

We get more of what we focus on.  More to the point, what we focus on is perceived as more and more prominent;  it is,  after all, the subject we’re bringing into careful focus in the foreground of our mental photograph. The danger is that in perfecting the focus on the ways in which her mate doesn’t meet her expectations, the “shortcomings” expand in her consciousness and before long entirely obscure his true gifts.

Note:  Yes, there are behaviors that cannot be overlooked or tolerated.  There are people that cannot or will not respond to respectful requests for change.  Addictions, abuse -- whether physical or emotional, persistent apathy, clinical depression, diagnosed mental illness -- these are often manifestations of such a depleted emotional bank account that professional intervention is required to bring someone up to a positive balance again -- so that they can respond and not just react, so that they can choose to change.  

If like me, you have a mate who is reasonably happy, balanced, and proactive in his life, it’s very simple to fill up his/her emotional bank account.  What does it look like for us?  It’s a touch, a kiss, a compliment, loving eye contact, preparation of a favorite meal, a back rub, holding hands, a night out, flowers, doing the dishes -- so many small acts of service and devotion.  

Lee loves it when I pick up the tab for a meal out occasionally.  It makes no difference, really.  Our money is entirely merged at this point, but it makes him happy.  

I love it when Lee suddenly freezes in mid-step and says, “Oh-oh, it happened AGAIN!  I’m even more in love with you!”  

We ask each other more than once a day, “What can I do for you?”  More often than not, the answer is “Not a thing right now,”  but it’s a great feeling knowing that someone really wants you to be as happy as possible.

When one of us does something undeniable stupid (like frying the microwave using it as a kitchen timer;  yes, I did this), the other refrains from blaming. Lee helped me clean up, air out and then sat down and ordered a new one.  I didn’t need to have a second opinion on how dense I can sometimes be in the service of expediency.

Lee and I recommend the book The Five Love Languages by Gary Chapman whenever a friend says something like “We love each other, but we’re so different. I just don’t understand her.” A woman is more apt to say, “He just doesn’t get it!”  Each of them are certain that they are showing their love and devotion, and just as certain that their partner is either refusing to acknowledge the effort or is just plain dense.  It’s possible, says Chapman, that neither of them is fluent in their partner’s love language of origin.  I know that Lee feels loved when I spontaneously give him a good foot rub (love language: physical touch), and he knows I feel loved when he raves about a turn of phrase in my writing (love language: words of affirmation) or jumps in and does the dishes (love language:acts of service).  Filling up the emotional bank account is more effective when you’re depositing into the optimal account.  As Lee says, why not make it the one that has the highest interest.

As a gardener, I think of it as providing the most fertile ground for Lee’s growth.  How?  Encourage, affirm, and celebrate him. Take time for a 10 minute foot rub.  Love him without conditions.  Lee has to do his own pruning, because only he can decide what the finished masterpiece that is Lee Strong will be.  

I’ve heard it said that there is no such thing as constructive criticism, because by nature criticism is a tearing-down, not a building-up activity.  Or to follow Covey’s metaphor, criticism is almost always a withdrawal from the emotional bank account.  Happily, if you’re making frequent deposits and if your mate is a relatively happy, emotionally balanced person, respectful, loving requests for changed behavior are usually not perceived as withdrawals.   

Consider this quote from Charles Schwab, investment guru:  “I have yet to find the man, however exalted his station, who did not do better work and put forth greater effort under a spirit of approval than under a spirit of criticism.”

This seems like a good place for PROMISE #2 from our wedding:

We're too busy looking at what's right with us to worry about what might be wrong.  We promise to keep looking at what's right.





Picture
0 Comments

ALONE TIME

10/2/2016

2 Comments

 
Picture
Alone Time

Lee’s on the couch wearing sound-cancelling headphones reveling in composing music for our podcast -- and I’m in the kitchen -- earbuds in -- rocking out to some serious guitar riffs on my Spotify wedding reception playlist while whipping up some fresh-basil/roasted-garlic raspberry vinaigrette.  

Lee’s still excitedly sliding dials on his virtual mixer board, so I pull out my yoga mat and breathe through some stretches for my bones and some poses for my balance.  He’s still riffing, so now why not address a topic we want to include in our book -- alone time.

Holding balance poses carries my mind to Mom.  Despite decades of long ridge hikes, moving the furniture around regularly and sweeping the driveway free of leaves(!!!), Mom’s balance is now a sometimes proposition.  Falls are not a surprise to any of us anymore -- except maybe to her.  Yes, she’s 94 -- but maybe, just maybe she’d still have better balance if she’d been mindful about it sooner.  I know that seems off topic -- but it’s not, because I’m not just across the room doing something different than Lee -- I’m truly alone with my thoughts.   

As Lee and I pass by each other on the way to the bathroom or to the kitchen to get an apple, we almost always lean in for a kiss, and sometimes I ask Lee if he’d like another pair of ears on the tune he’s composing.  Or I ask him to taste what I’m cooking and tell me what’s missing.  It’s a great flow.  It’s alone time together in a small space.   

A time will come when we’re not waiting for the phone to ring and one of the Heart Transplant Team to say, “We have a heart for you--”  -- when Lee is fully recovered and we’ll go places separately again.  Now, in this one-room flat, we find ways to be alone although we’re physically in the same space.  Make no mistake, we love being together.  That doesn’t change the basic truth that EVERYONE needs time to be unsupervised and roam free.  If it’s not built into the schedule -- and even if it’s improbable that you can carve it out --your imagination can find its secret room/treehouse/attic corner/hidden grotto and a little time to spend there enjoying your self.  

I remember reading a book titled The Overbooked Child years ago when my children were very young, and this truth stuck with me all these years:  The over-scheduled child (horseback riding on Monday, gymnastics on Tuesday and Thursday, piano lessons on Friday and soccer on Saturday) is in danger of never developing an internal dialogue.  I was immediately glad that I didn’t have the resources for multiple activities, so my son did take private art classes but spent many more hours making mud obstacle courses for ants.  Mayme did take ballet, and also regularly lined up 20 or so dolls and stuffed animals and gave them spelling tests (she recorded all their answers and corrected each paper with care). Their internal dialogues are intact!  And they are both comfortable, as they say, in their own skins.

Of course, in this small space Lee and I inhabit now, headphones help!  The garden is a great separate room too.  The bathroom and especially the shower provide other quality solitary moments. It’s good to know, though, that we can create our own alone time when we are only a few feet away from each other for extended periods.  

There are endless things that Lee and I LOVE to do together -- walking, cooking, cuddling, talking about ideas, sleeping, heading down the road together to name just a few. This doesn’t reflect our respective lives before we found each other; we’d each always been independent, self-starting people who spent much more time alone than in the company of others..  We often say something akin to -- “How come I don’t feel that familiar compulsion to just get AWAY by myself since we’ve been together?!”  

Lee and I enjoy each other’s company beyond all others, but still, there is a universal  need to let the wind blow through my own thoughts without interruption or input on a regular basis.  Alone time is when I have the quiet space to make course corrections so that this journey takes me where I most want to go.  It’s when faces arise in my mind of people that may need to hear from me.  In the best case scenario, it holds the door open to that connected-to-everything space where greater wisdom resides.


Picture
2 Comments

THIS THING CALLED PASSION

9/18/2016

2 Comments

 
Picture














There’s always the call to be passionate.  The call to be passionate in my marriage, passionate in my business, passionate in my writing.  There are people who are passionate when they cook.  Other people --when they champion a cause, when they write a song, when they make a perfect join on a cabinet corner, when they grow a twelve foot sunflower outside the kitchen window -- do so with passion.

What is this thing called passion?

When I think about the peak experiences and accomplishments in my life, I see a distinction between things I did because I needed to perform -- and things I did because I was propelled to do them by some internal force.  

Excellence is a word people use to describe a certain level of performance.   It’s an outside assessment.  Approval is a powerful motivator to some of us -- at least during the first several decades of our lives.

It’s not just that I needed to perform in my earlier decades.   I needed someone to witness that performance and assess that performance.  This was the larger part of the  value of the experience or expertise -- the assessment, the approval.  These pursuits in pursuit of approval fall away after a period of time ranging from days to a decade or two.  I see this in my early foray into playing the piano and learning to read in French.  These pursuits were about performance, not passion -- approval not purpose or self-actualization. I no longer play the piano;  I no longer choose to struggle through some tome like Le Mythe de Sisyphe by Albert Camus.

My level of passion is something only I can assess.  And it defies measurement, like all the really important things in life -- like love, and compassion, and tolerance.  Passion is there, or it isn’t.  It’s not a matter of degrees.  Passion -- or the absence of it -- is not subject to outside assessment.  

Passion does leave clues, but it’s possible for passion to be invisible to other people.  We see it when we hear a superlative musical performance and when we witness instances of selfless courage.  More often, though, passion is identifiable only by persistence bordering on allegiance -- and also usually by a certain quality of energy and eye contact.

Passion also implies purpose -- another inside deal.  Performance for approval can serve a purpose as well, but it has a different driver, and it doesn’t cause the soul to soar.

Consider a rockstar who burns out and spins out of control.   Not an uncommon scenario.  Is it possible that this star is someone who began with passion as the driver and, over time, the passion to express something powerfully shifted to an addiction to standing ovations? Perhaps there was a tipping point when the approval of others outstripped self-expression and self-approval (AKA self-esteem).  And when that happened, self-destructive behaviors began to skyrocket.  A vacuum had slowly spread and it couldn’t be eradicated by drugs or adulation.  There was something missing, and I believe that something missing, or lost, was passion.

This thing called passion is defined as fervor, zeal, ardor -- and also as ire, fury, wrath, rage.  I found only one antonym:  apathy.   Passion moves me to act;  apathy paralyzes my spirit, my mind and my body.  Not all movement is growth, but movement in the service of one’s passion is expansion by definition.

A job requires excellence if I’m going to advance.  After all, someone else is going to decide whether I get the title or the raise.  To sustain a business of my own during the duration of the launch -- which can be months or years -- requires sustained performance driven by passion.  I have to decide if I will progress to the next level.  No one else can bestow success upon me because I pleased them with my performance.

A marriage based solely on approval for doing one’s part is a transactional relationship that lacks…. well, passion.  

How does one answer this call to passion?  Where does one find the magic driver?  Inside, not outside.  Passion is an inside job -- birthed inside and evaluated only from inside me.

This birthing requires self-knowledge -- self- knowledge of a very specific kind.  Not knowledge of my strengths and talents.  Not an awareness of my psychoses or foibles.  Rather a deep knowing of what it is that gets me off my butt and propels me in a direction that makes me feel a certain uncontainable glee.  This glee is the gut-based certainty that I’m on the right track, doing what it takes to bestow upon my life that magic formula that is equal parts joy and purpose.

Drilling deeper -- where does self-knowledge come from?  No doubt, being willing to take some risks, being open to the road less traveled and stepping in some potholes is the only way to learn what I’m about.  Following the herd will never lead me to my true self.  I’m not talking about reckless, uninformed risks.  I’m talking about “mentoring-up.”  Finding those individuals who have the lives, the relationships, the sense of purpose that I crave in my life.  

Let’s see if I can map this out:

Risk-taking--Mistakes-Self-knowledge-PASSION-Performance-Progress-Purpose.

Right smack in the middle is PASSION.  I can see what precedes it, and the reward that follows it:  A life with purpose, on purpose.  I can get passionate about that.

​


“Life is either a daring adventure or nothing at all.”  Helen Keller

Picture
2 Comments

TODAY'S LOVE LETTER TO LEE

8/28/2016

0 Comments

 
Picture
Today I heard myself describe your pre-LVAD locomotion to my nephew Joey.  I said, "Lee charges ahead when he walks; he's restless -- always bursting to get out and do something."  
And that, of course, triggers one of our favorite riffs, "What I love about you is..."

I love the charging, restless, playful and benevolent person that you are.  You
call me to be more bouyant, more playful and more kind -- more awake.  Like you.


It's the alchemy of how-you-are combined with the alchemy of how-I-am that is so mysterious and fascinating.  It's the chemical reaction -- heavy liquid smoke pouring over the edge of the beeker -- of us.  In combination, we have expansion and energy.  We are something new, full of hope and promise.

I picture that we're swept forward on a wave of shared experience riding on the private raft of our shared identity -- "us".  Sometimes the waves are gentle and lulling and sometimes they threaten to capsize us.  

It's taking the time to foresee our destinations that keeps us afloat.  It's recalling that we're headed toward moments of awe when it's only your laughter that's making you breathless, and your gratitude -- our gratitude-- is SO BIG that it fills the sky like a flaming sunrise on Furnace Creek Wash.

One of the multitude of things I love about you is--us.  Who I get to be next.  Who you get to be next.  Who WE get to be next.

0 Comments

August 25th, 2016

8/25/2016

0 Comments

 
Picture
LOVE IS NOT A UNIVERSAL LANGUAGE

There’s a surprisingly insightful book called THE FIVE LOVE LANGUAGES by Gary Chapman.  The premise is that, either through nurture or nature, we all have a dominant way in which we express and receive love.  It’s our love lingo, if you please.

The five love languages:

  1. Words of affirmation: compliments or words of encouragement.
  2. Receiving gifts: symbols of love, like flowers or chocolates.
  3. Quality time: their partner's undivided attention.
  4. Acts of service: setting the table, walking the dog, or doing other small jobs.
  5. Physical touch: hugs, hand holding, back pats, or sex

The “AHA” of this book for me was that it’s entirely possible for someone to love greatly and for the recipient to doubt the magnitude of that love.  

Why?

Some people express love and receive love with words -- compliments, affirmation, encouragement.  Give them a gift, an endless hug, feed their dog when they’re away, and they still won’t read “love” --not until you tell them that you love them and why.  Conversely say something “you didn’t really mean,” and that careless, reactive thing you said will never be forgotten.

Others speak “gifts”.  These are the people who would never return from a trip without some kind of gift for each person they love.  I have a friend who was devastated when her husband didn’t fill her hospital room with flowers and balloons when she gave birth to their first child.  No words could avert this, no words could correct it.  The only remedy was to show up with her favorite ice cream flavor or wrap up those earrings she was admiring last week -- if he wants to have his love become comprehensible to her.

Acts of service:   These are the people that cook your favorite dish or do the dishes to tell you how much they love you.  And no matter how many gifts you give or words you say, these same people are not
going to be convinced of your love unless you learn to speak “acts of service”: lift a burden from them -- do the laundry or shake the throw rugs without being asked.  

Quality time.  This is a phrase that has been thrown around alot, and it’s easy to get quality time confused with some gifts (taking someone out to dinner or the ball game) or some acts of service (painting the baby’s room or getting the shopping done --together).  Quality time means you are entirely focused on the other person -- listening responsively, talking from the heart, appreciating the moment together.  Lee and I call it “being in the bubble.”  Almost all young children are fluent in this love language, and crave this kind of absolute attention from their parents.

Physical touch is life-saving to at-risk infants, according to many studies.  Sex is important to good health and a lot of fun, but hand-holding, hugs, pats on the back, hand-shakes, backrubs -- all forms of benevolent touch make us feel fundamentally accepted and appreciated.  When Lee was in the hospital for weeks, he says the leg and foot rubs I gave him several times daily helped him immeasurably to forget what hurt and what was going to hurt soon -- for just a moment.  

There’s the prototypical story of the woman who is doing dishes, and her husband comes by and pats her bottom.  She’s loving him through her primary love language -- acts of service (making sure the dishes are washed and the kitchen put to rights) -- and he’s expressing his love language of physical touch.  If she reacts with irritation, this means he needs to take the sponge away from her, pour her a glass of wine and lead her to her favorite chair, AND finish the dishes for her -- thus speaking HER language -- acts of service.  And she would do well to rub his shoulders and give him a lingering kiss when he’s done -- making the effort to tell him in his “first language” that she loves and appreciates him.

Even occasional, imperfect fluency in your loved one’s language will get the message across.

So love is not a universal language;  there are many dialects.  And we would do well to learn to recognize when someone speaks a different love dialect and make an effort to speak their language.

It occurs to me that although love is not a universal language -- food IS.   Food can be a gift, an act of service, a tribute, an occasion for quality time, and if you feed each other, it even fulfills the physical touch requirement.  

I find myself mirroring my mother in preparing favorite dishes to let people know I love them.  This always seems to get through to their love detectors.  

Maybe this is why some women finish off a pint of ice cream when their heart is bruised or broken.  It’s a poor substitute, true --  but the action, I believe, is the psyche saying, “I’ll feel better if give myself some sweet, creamy, chocolate-loaded LOVE.”  

Loving someone else with creme-brulee (my daughter), or with chips and onion dip (my sweetie), or whatever delights them should never be the ONLY way we show them how we feel, especially if they have food-related health concerns.  Still, a bowl of cherries or single square of chocolate does more than raise the metabolic rate. A culinary gift needs no translation.  It says -- unequivocally -- “I love you.”

​
0 Comments

FULL-ON

8/16/2016

0 Comments

 
FULL ON!

I just got it.  One of those things you KNOW, but it hasn't hit your roots.  Now it's HIT.

 I have to live it FULL-ON.  There is no “wait until we get through the heart transplant”, or “wait until Lee is stronger”.  We may do different, less taxing or less distant, activities -- a trip on the Muni to Balboa Park rather than a trip to Eagle Lake in the Sierras or a walk around the San Francisco Botanical Gardens and not to a perch overlooking depthless canyons in Arches National Park.  But it still has to be FULL-ON -- with our full, undeferred, passionate presence.  Our presence is MAGIC when we’re not holding back.  There’s too little of precious life left to hold back now.  It ALL -- the great, the painful, the humiliating, the terrifying, the euphoric, the irritating, the miraculous -- it ALL has to be lived FULL-ON.


We can’t put the next adventure on the calendar. We don't know when Lee's new heart might make its appearance.  We have to stay close to home -- and close to home is here, in a city where we are braving a very chilling San Francisco winter on August 16th. It can’t have reached 70 degrees lately -- except right here in our neighborhood.  But Goddamn! we fortuitously landed in the one neighborhood (possibly) that experiences a breath of summer on occasion (something like the breath of gin that went into Mom’s martinis when medications prohibited alcohol -- not very much!).  Still, SCORE! - we are in this miraculous space with an amazing garden inhabited by dragonflies and hummingbirds and at least one very large squirrel.  We are HERE. Not in Burlingame in an apartment complex, not in a highrise downtown -- here.

When did we stop counting the miracles?  May have been just yesterday ---  needs to be an everyday, many-times-a-day pursuit!  

In the pursuit of miracles, in the active service of wonder -- this is the purpose of this quarter of my life.  It’s almost a “get out of my way -- I’m LIVING HERE!!!” kind of a thing.  Full-on.
0 Comments

WATCHING IT GROW

7/30/2016

0 Comments

 
Picture
WATCHING IT GROW

Lee keeps bringing up how our relationship has deepened during our pursuit-of-a-heart adventure.  

I feel what he means.  I agree with what he says.  At the same time, I find I want to identify, as precisely as we can, how our union is changing in this particular experiential petri dish.  So, in part, this will be an interview with Lee about how these new depths show up in our relationship -- and in part, a spelunking expedition to see where these caverns might lead. I’m fascinated at the prospect of consciously observing and recording the subtle shifts in how we relate as we travel towards a new heart for Lee.

This current journey has a specific arc even if an indeterminate duration.  This makes it ideal as a life lab experiment.  Restricted to within a half-hour radius of UCSF, limited to less-taxing activities, facing new learning curves daily around everything from mastering self-administered blood tests to how to navigate taking the Muni J line to the San Francisco Railway Museum -- in the controlled microcosm that is our life is right now --  -- we can almost isolate and record gradations of change in how we jointly respond to life and to each other.  I say “almost”-- because we’re talking about an extreme intangible -- an evolving relationship.  AND because we’re not just trying to assess how Lee is changing or just how I am changing, but we’re attempting to chronicle a separate metamorphosis -- changes experienced by the third entity called “us”.  

Over lunch today (a return trip to our favorite neighborhood Chinese restaurant), Lee and I revisited something we’ve said many times and we see there’s even more power to this truth now.  Here it is:  

We wouldn’t trade places with anyone else.  Not for greater financial ease, although we’re on track for that and it’s an unquestioned life enhancement.  

Not for youth -- although we do allow ourselves to feel that youthful innocence and wonder frequently.

Here’s the one that is a newer realization:  Even though a significant health crisis undeniably stretches our endurance and our strength of character, we wouldn’t trade places with anyone else -- not even for the freedom of unbroken vibrant health.  And yes, we both intend to get stronger and stronger, and honor this second chance at great health.

Imagine a balance scale.  With PRIMARY RELATIONSHIP on one side, and WEALTH/YOUTH/HEALTH on the other side.  On one side -- relationship --unquantifiable; on the other -- wealth, youth, health -- all numerical, all quantifiable on some scale.  

For us, there’s no question which side of the scale drops.  We feel we have the most valuable treasure -- without which wealth and youth and even good health would be hollow victories. We’re in a constant state of wonder (and can bore you with this at a moment’s notice) over all the ways our relationship WORKS -- freeing us to explore our respective gifts and combine them to sprinkle sunshine on all the other children we come across on the world playground.

So, we’re setting out to do something a little nonsensical -- find measures of the immeasurable and see if the documentation of our “experiment” leads to a workable theory.  We’ll call it THE THEORY OF EVER-EXPANDING LOVE.

We’ve identified three areas where our relationship has taken on new depths.


WE ARE WHO WE THOUGHT WERE

What we’ve each claimed as our gains in personal growth -- increasing honesty, kindness and empathy refined over past decades -- have now been put to the test. Through pain and exhaustion and discouragement for Lee -- and through almost-panicked fear at the start to anxiety over mastering all the critical nursing skills for me -- who we are, individually and as a couple, has come into laser focus.  

For me, it registered as “He really is the man I thought he was” -- as I watch Lee’s signature optimism and encouragement of everyone around him carry him through all the invasive tests and then make a slow but steady comeback after a traumatic surgery.  

Equally gratifying is the realization that yes --  even with temporary failures of faith and attitude -- I am the woman I thought I was.  Lee reports the same “Aha” moment, reinforcing both his own expansion and the quality of our love.

Lee adds:  “It turned out that Susan is more than I thought she was. I thought I knew her, but I realize that there’s always something more to know -- and there’s always more to know because we’ll continue to have intense, expanding experiences on both ends of the happiness spectrum.  One of the ways I’ve been surprised by the woman I love is how she takes care of me -- not out of duty and without complaint;  I have the sense she feels privileged to be the one to care for me.”

At the outset, we kept hearing these words from the medical staff, “If I wasn’t looking at your numbers, Lee, I’d think you were entirely healthy.” Both times Lee was admitted -- once to the hospital for accelerated assessment and back again to prepare for transplant-- we were asked “Where’s the patient?  Are you bringing in a family member?”  Lee refuses to approach life broadcasting defeat at the outset. Lee is known for bouncing onto the scene with a big smile and inquiring how whomever he’s addressing is faring in life.  He was always asking the amazing staff there if there was something he could do for them.  This caused a few double-takes!

Lee has a signature question in business:  “Are you fun to work with?”  And he had a signature statement in the hospital:  “I’m the best heart transplant candidate this hospital has ever seen.”  More than a few times someone leaned in the doorway to say, “I’ve HEARD about you!”  

One night, a nurse not even assigned to Lee came in to hold his hand and be encouraged to claim a life of rock-climbing adventure. This is just one of many heart-connections (pun-intended) that Lee made during his month and a half of hospital time.  

I’ve always admired Lee’s capacity to rebound quickly from the low points, but now I know this capacity can withstand stand trial by fire.

UNITED IS MORE THAN JUST A WORD

Also on the increase is the pride and confidence in who Lee and I are as a team.  We already knew we are a dynamic business team, and it was gratifying to demonstrate to everyone in the hospital from the surgeon to the cleaning staff that we were teachable, resilient, unified and positive about our outcome.  We were both being evaluated -- physically, mentally, psychologically -- to see if we qualify for the great gift and responsibility of a new heart.  Testing wasn’t quite complete when the Heart Transplant Team met and reached unanimous agreement that our recipient/caregiver team qualifies.

Lee’s comment:  “From the beginning, everyone recognized our path and our destiny.”

THERE’S FREEDOM IN FULL DISCLOSURE

We’ve reached a new level of intimacy, both physically and emotionally.  Lee has always been conventionally private about certain bodily functions but, like all patients, he was compelled to abandon all modesty in the hospital.   My “exposure” was not as absolute, of course, but I realize that I’ve graduated from the need to maintain any semblance of an alluring facade on a regular basis.

Nurses have told us that they believe there’s some correlation between heart patients in particular and the tendency to suddenly and regularly break into tears.  We got used to nurses saying, “Now you know what PMS feels like!”

In the six years since we started traveling in tandem, my experience  is that being overcome by emotions like gratitude and love is not uncommon for Lee.  But in the hospital it was greatly amplified and he was initially alarmed by frequent intense bursts of tearful gratitude punctuated occasionally by tears of discouragement. One day in particular when Lee was wondering if he could make it through this particular tunnel of fire, I said, “Well, let’s just cry together” -- and we did.   

It feels like all that was previously undisclosed is now part of our shared experience -- like the last known boundaries are down.  There’s something freeing about full disclosure both on a physical and an emotional level.

From the beginning it’s  been our intention to expand our relationship. In fact, it’s part of our wedding vows. I tell Lee that what convinced me to say yes to his proposal --more than anything else -- were these words,  “It’s just going to get better and better.”  Since it was astoundingly good to start with, who wouldn’t sign on?

Knowing that we’ve signed on for a union that gets better and better frees us to expand in both good times and bad, without giving it a second thought.

So far, we’ve identified three areas of where our union is stronger as a result of this mountain we’re climbing.  Our admiration for each other. Our confidence in our union.  Our transparency with each other/ AKA intimacy.


Lee and I like to proclaim that ours is the greatest love affair in history -- and that no one has to agree but us.  And we’re so grateful that it’s going to get even better.
0 Comments

SUSPENDED IN THE FOG

7/23/2016

0 Comments

 
Picture
I think most would agree that San Francisco rivals London as a foggy metropolis. Here in our right-now home, though, it's a “scripted by Disney” day:  Brilliant sunshine, but cool. A slight breeze. A green backed hummingbird doing it’s flower dance right outside the window.  And then a white butterfly meanders though.  Seems almost unreal.

Most days there are two, maybe three neighborhood cats who traverse the yard frequently and loudly claim this as their territory, should the need arise.  The long grey squirrel that passes through the fence at eye level immediately outside the kitchen door seems to be able to time his visits so that he doesn’t challenge any of the cats.

Suspended in this profound silence and with so many entertaining scenarios unfolding as if produced especially for me, it’s hard to believe that we’re wedged in the middle of a great city packed with an amazingly diverse and increasingly blended population. Neighborhoods are less and less separate -- except for Chinatown.  Around us, so near Mission --the Asian, the Indian, the Italian, the South American and Mexican businesses are scattered like confetti along the street, with concentrations here and there.

There’s so much to explore in just the immediate blocks that I almost forget to miss sitting on our big front porch in Petaluma and hearing the neighborhood chickens, cows and sheep sound off just before the sun went down.  Here there’s  a different chorus.  Yes, there’s the occasional siren and construction noise,  and there’s no way around occasional reminders that the walls are thin and very close to other people’s walls -- but right now, again, I’m saying to myself in amazement: “It’s so quiet!”  

I do sometimes miss grazing in my own vegetable garden.


Lee and I have found our corner cafe hangout.  New Alternatives is less than a block away.  Don’t let the name fool you.  It’s not a New Age vegan/gluten-free haven.  It’s a cozy, personal little place leaning towards Mexican in the cuisine, towards Petes in the designer coffee and towards just plain-good-coffee-shop in the rest of the menu.  The proprietress is a friendly, accommodating woman named Luz.

Is it really cool and windy here most of the time, even when there’s no fog?  Yes, Lee in particular would like the air to be still and the temperature to top the 60s now and then.  
I’ve always found fog to be somehow cozy permeated with a mysterious sense of time slowing like the heartbeat of a master meditator.  Fog has always intrigued me, but in the middle of July?  Still, I much prefer this kind of weather to the kind at the other end of the thermometer -- better for walking and cuddling.  

Everything we need -- groceries, pharmacy, UPS store for larger mail, at least a dozen intriguing restaurants -- all are within a block or three of where we live for now.  We have no vehicle here, but proximity and Uber take care of all our needs.

There’s something wonderful about being suspended in time the way we are now.  For now, we don’t know how long we’ll be exploring here in San Francisco.  We don’t know when Lee will be offered a new heart, or exactly how long the recovery will take.  We’ve heard stories about people who received their hearts within days of being on the list and recovered quickly in 2 or 3 months. And we’ve heard stories of people that lived on the LVAD (the “pump” in Lee’s heart) for years before initiating the next step.   My math tells me that there’s a range of a very few months to years from diagnosis to recovery.  Lee and I both believe we’ll be taking the quicker but careful road back to mobility.

Suspended, but not inactive.  It seems we fill every day with the inevitable responsibilities -- like driveline dressing changes, medications, blood tests, weighing, blood pressure, battery changing and a long list of other medically required activities -- but also with adventures like walking somewhere new, dining in China Town after our insurance meeting, presenting a training in our downstairs studio to 7 or 8 Kenyan gentlemen, and more and more frequent visits from family, long-time friends and new friends.

Suspended but supported -- by the people who pour out their love for us, by the people of at least a dozen different faiths who pray for us, by the cardiac team that is incredibly dedicated to Lee’s very best outcome, by our ever-evolving love for each other, by our shared belief that our lives are like an epic movie and we have great things yet to accomplish.  

In fact, today I heard Lee express to a dear friend that they are both still around -- despite dances much too close to their respective ledges -- because they still have people to help.  

Lee comments that we won’t miss it here when we move on -- just like we don’t miss our idyllic home in Petaluma -- because we know it’s just another moment in time, another scene in our movie -- ephemeral like all the homes, all the scenes, all the moments.  

I believe this San Francisco episode is a pivotal one for many reasons.  The top two are because Lee brushed so close to being “written out of the script”, and because it’s a surprise -- a twist in the plot.  We didn’t plan to camp in this particular “resort camp.”  This episode stands as a beacon flashing the truth that we’re alighting here for a moment, and that’s all we really ever do -- alight in one space and then move to another, whether we’re someone who lives in the same shack in the mountains or in some desert town most of their lives  -- or you have 53 past addresses like Lee.  We’re alighting in our present life, and then our intention is to touch down in another reality -- another scene -- in a few months.

When we talk about this, Lee and I always remark that we’re so fortunate to be in sync -- to agree, as Lee says, that we don’t want to just endure change, we want to embrace it.  Embrace it and find the joy in each pause.  Even if sometimes it’s merely the joy of gratitude that pain is decreasing and energy increasing.

My earliest distinct memory:  I was two-and-a-half or three years old, all bundled up and standing in our driveway in an unremarkable suburb in Redwood City.  I was so enfolded by dense fog that, for the first time in my life, I felt completely alone -- even though a parent was undoubtedly a few steps away.  I felt thrillingly autonomous and entirely alive in the moment.

Time is crystallized in the moment like that for us now.  We don’t have the sense of being alone -- Lee and I have never been more unified.  It’s the indescribable sensation of creating our personal movie from moment to moment.  Our movie has all the twists and turns required by good drama.  There are most definitely mountains to climb and painful obstacles to overcome.  Maybe you remember sliding down a grassy slope on a piece of cardboard? -- We love those scenes!  No one’s movie is always easy or fun, but we are dedicated to allowing the play and laughter to find it’s way into the script.

Our personal Oscar will be awarded for clarity of purpose.  We know why Lee’s heart held out this far, why he made it out of surgery, why we’re living suspended in time in the fog.  It comes down to three things:

Live it now.
Live it well.
Give it away.

0 Comments
<<Previous
Forward>>

    Archives

    September 2017
    July 2017
    April 2017
    March 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    April 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015

    Author

    Susan is a published writer and motivational speaker with 20 years of experience, dedicated to guiding people to a life of financial invincibility and peace of mind.

    Categories

    All

    RSS Feed

Photo used under Creative Commons from www.ilkkajukarainen.fi