SORROW UNMASKED

12/01/2021

Your joy is your sorrow unmasked.

And the selfsame well from which your laughter rises was oftentimes filled with your tears.

And how else can it be?

The deeper that sorrow carves into your being, the more joy you can contain.

  -Kahlil Gibran

At the time, it felt like our wings had been clipped just as we were about to take flight.  

Just over four year ago, in March of 2016, Lee and I divesting ourselves of nearly all our possessions in record time.  We left behind a three bedroom, two bath farmhouse with an endless porch and a large detached barn/office on 2 acres, a forest of sunflowers and four 4x6 foot, crudely built but well-tended vegetable garden boxes.  We found new homes for every dish, table, couch, desk, lamp, for 90 percent of our clothing, for every antique treasure and physical photograph, every file cabinet and monitor, an ocean of cords -- and for every collected sunflower seed… as well as three vehicles.  Unencumbered, we were ready to fly.

In April, we began our nomadic adventure touching very lightly on the planet and moving on every few days.  We felt a kind of buoyant bliss to have pulled up our roots.  It felt like going from a heavy, vegetative state to much more airy yet highly sentient one.  We were acutely present, aware of each new experience -- but also more and more alert to Lee’s changing physical condition.

By month’s end, a different adventure had rooted us in space once more.   In fact, our circumference of movement had become severely restricted.  

In April we left the quintessential beauty of Yosemite ahead of schedule because it was clear that Lee’s heart was rapidly deteriorating.  The next breath was so hard to come by that he felt like someone was holding a pillow over his face, and I spent the nights lying awake trying to capture the next breath for him.  I counted as many as 12 to 15 seconds between breaths, and close beside him, I could feel his heart beat infrequently and with effort -- like each beat was barely breaching a high hurdle.  I couldn’t help asking myself, “What are my first five actions if his heart just stops now in the middle of the night in the middle of this campground?  The options weren’t good.  

It wasn’t my fear that propelled us from that campground early the next morning.  It was Lee sitting by the window with the shades still drawn.  He was weeping --not in fear of the outcome -- but in dread of the process.  Against all reason but true to character, Lee never doubted coming out the other side strong, grinning and sure of his steps again.  

I imagine heading into a heart transplant is akin to jumping off a bridge, trusting the bungy technology and the practitioners of the sport to bring you springing back to safety above the raging falls.  Not something all of us elect to engage in.  Everyone has a different thrill tolerance, and that’s good.  But jumping into a heart transplant is more like being pushed into a well rather than jumping off a bridge with a lifeline attached.  Lee didn’t know how far down he’d have to go before the team could assist his rebound to the surface again.  Avoidance finally fell to a greater compulsion -- self-preservation.

From Yosemite, we drove straight to Lee’s cardiologist’s office in Petaluma, and within minutes, Dr. L informed us that he would be recommending Lee for a heart transplant at UCSF Medical Center.  A week later Lee was in the hospital undergoing intense evaluation, our new nomadic home was in storage, and we were again in a stationary abode -- this time within the required 30 minutes of the hospital.   This is where we would wait for the call that a heart had been found for Lee.

Lee spent almost a month in the hospital at the start, and after a very close brush with death during surgery, he returned to our rented studio in Noe Valley with a turbine (LVAD, Left Ventricle Assist Device) implanted in his heart.  This device boosted Lee’s dying heart from a feeble 23 percent performance to between 80 and 90 percent, and made it possible for him to wait for a donor heart.  It was somewhat bizarre that Lee was now battery-driven and plugged into the wall at night.  We soon learned that the LVAD gave us a welcome freedom -- once he’d recovered for a month -- to visit the Botanical Gardens, try one of dozens of neighborhood restaurants, and take a ferry to visit friends and family- to have some fun while we waited for the call that Lee was on the active list for a heart.  

We’ve always been clear that if one had to be confined in a city, San Francisco is indeed a gilded cage -- but, for us, it was a cage all the same.   The sensation for each of us was that with buildings looming all around and wires obscuring the sky, we were indoors even when we were outdoors.

Altogether, we waited five months between one major surgery and another. It seemed like forever, especially to Lee.  Given that it’s crucial to be fully recovered before a second major surgery is performed, it was in reality a very, very short wait.

Lee’s heart arrived on election day, November 8, 2016. For us, it was a joyous day, full of excited phone calls to friends and family, and it was a somber one too. We may never know who Lee’s donor was or how he/she passed, but -- even as we rejoiced at Lee’s rescue -- we felt the sharp proximity of grief.  Our team kindly reminded us that this heart is a gift.  Lee didn’t take it from someone else. It is a gift from someone who Lee now honors by living intensely and with immense gratitude.

Between waiting for a heart and waiting to recover sufficiently to travel, Lee and I spent endless hours viewing Youtube vlogs of other budding nomads and planning our travels once we were released back to the wild by our post-transplant team. We took our imaginations on daily test flights to all the peak experiences we anticipated.

We remained in the city for just under three months after transplant, going to outpatient appointments four or five times a week at first.  From start to finish, our San Francisco adventure lasted nine months. And yes, it did feel like gestation was complete and birth was imminent.  

Hidden in the wrapping of this gift of a new heart is a sister gift.  We’ve both been boosted to a new level of appreciation, a new intensity of mindfulness.  This adventure that felt so much like a detour is really a first destination that makes all destinations that follow much more precious and purposeful.  

Our wings weren’t clipped.  Our hearts were grown in 2016, and we can roam much farther now and love much deeper. 

Note:  Four days after Lee’s new heart replaced the old, he wrote the  lines below.  One of his nurses absconded with the scrap of paper he wrote it on, and submitted it to KTVU, where it promptly went viral.  I’m sure, given the date of transplant and the message, most can understand why.

My Heart and I

I know a lot about myself. But I know nothing about my new heart other than it has saved my life.

My heart could be male or female. My heart could be Hispanic, African-American, Native America, Indian, or Caucasian. My new heart may be Catholic or Jewish, Christian or Hindu.  Maybe my heart was previously beating in the chest of a Buddhist, a Muslim or an agnostic. My heart could have origins in Asia, Australia, North America, South America, Europe or Africa.

My heart could be gay, lesbian, transgender or straight. My donor may have been covered with tattoos and piercings or may have had no adornments at all.

My heart could have resided in a Republican or a Democrat, conservative or liberal. It could've been beating away in someone who decided not to vote at all.

My heart and I are very symbiotic. We live off of each other and one of us cannot live without the other. My heart and I have much love for each other.

My experience as a heart transplant recipient brought home an essential truth to me: We are ALL part of one another. We are one humanity.  Our physical parts are even interchangeable.  We can--if we choose to -- have a unified heartbeat despite our differences.