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.
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.
Susan is a published writer and motivational speaker with 30 years of experience, dedicated to guiding people to a life of financial invincibility and peace of mind.