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.
At the time, it felt like our wings had been clipped just as we were about to take flight.
Just over four years 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 4×6 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 a 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 the 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 the 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 the 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 saved my life.
My heart could be male or female. My
heart could be Hispanic, African American,
Asian, Native American, 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 may
have 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.
Strange to say, my heart and I
have much love for each other.
My experience as a heart transplant recipient
brought home to me an essential truth:
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
despite our differences.
Powerful storytelling, Strong Ink! Thank you for sharing this amazing story
“every chapter/season offers up new perspective and possibility” — yes! As well as expansion to prepare us to meet the next sudden 180 degree life reversal. May it be WAY down the road for both of us!
Thank you for your insight, Carolyn!
Susan Strong, there are so many levels to this “story”/this life/this tribute to LIFE itself that I don’t know where to begin to express my appreciation for your words (which have been magnificently crafted into a journey of epic proportions). From the fanciful flight of being untethered by worldly goods to the difficult landing in a hospital/city awaiting a new heart as the only lifeline to any possibility at all, your telling of not just your experience but also the emotional roller coaster of that liminal time – in the void between knowing if/how life will unfold was exquisite and raw and REAL. Thank you for taking the time to chronicle this for the rest of the world. Thank Lee for his poem, which is more than a poem, it is a Hallelujah to life. AND THIS LINE: “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” will live with me always. I am most grateful.
Love your assessment of Lee’s poem as ” a Hallelujah to life”!
I am grateful to YOU, Minx, for your gracious and eloquent approbation, and for your ability to drive to the heart of the message.
YOU are most welcome Susan. I actually took your article and posted the link on my FB page where I share things “that give me hope.” Your article certainly did.
Very powerful story and full of so much emotion. We never know what waits for us around the corner.
Thank you, Lynn! You’re so right; we may feel we’re on a steady path, but the turns can be violently abrupt. The only solution I can see is consciously absorbing the lessons that upheaval piles on, so that we expand rather than contract.
Wow, Wow and Wow…. Thank you for sharing this amazing raw story of love, life, grief and joy. The power in your words resonates with me on so many levels, knowing that life is journey… and every chapter/season offers up new perspective and possibility.
By the way I LOVE #unifiedheartbeat!! I know there’s a good home for that hashtag.