The Wall

In February 2018, my friend Darren reached out to me regarding a project at Orlando Regional Medical Center. Darren is the recipient of a kidney & pancreas, and I am a liver recipient. (I have a chronic condition known as Budd Chiari Syndrome, for which there is no cure. Because of this condition, I received my first liver transplant April 16, 1995. Unfortunately, I needed a second transplant on August 5, 2011, due to recurrence of BCS.) Darren and I have worked together on a number of organ donation-related causes, and this one sounded especially interesting.

Still living in Tampa at the time, I traveled to Orlando Regional Medical Center. Darren introduced me to Debbie Alexander; Debbie brought together a small group of hospital staff with the hopes to find suitable artwork for a wall that had been allocated for a project.

The project is called “Wall of Heroes” and was designed by a caring physician named Jeff Sadowsky. Dr. Sadowsky believed something needed to be done to honor organ donors and their families. He explained that when someone passes, and they choose to donate, their families leave the hospital with their grief and a plastic bag containing their loved one’s belongings. They return to their lives within the community without distinction – but they are heroes, their loved ones are heroes, and they deserve recognition.

Dr. Sadowsky chose to act, founding the organization GR8 to DON8 in 2009. Merging his love of fitness to the cause, he formed the GR8toDON8 8k Run for Organ Donation. Contributions from the GR8toDON8 8k Run were allocated for a second passion project of Dr. Sadowsky’s: The Wall of Heroes. Dr. Sadowsky thought families and loved ones should have a place to go in which they could honor and memorialize their hero. A wall within Orlando Regional Medical Center was designated for the memorial.

Currently the Associate Director of the Medical Intensive Care Unit at Orlando Regional Medical Center, he was initially impacted by the power of donation during his early years in training, where he often saw very ill patients in need of transplantation.

One organ donor can save up to eight lives (hence the 8K Run for Organ Donation) while tissue donation can improve the quality of life for dozens more. Last year, nearly 31,000 lives were saved due to the generosity of organ donors. Today, more than 120,000 children and adults await that precious gift. Hundreds of thousands more patiently wait for the gift of tissue donation.

Dr. Sadowsky’s vision for the wall was a piece of artwork that would somehow convey gratitude and honor for organ donors. Darren and I brainstormed on an interactive project that educates the public about the importance of organ donation and will hopefully inspire individuals to choose life and register to become a donor (if they have not already). Meanwhile, Dr. Sadowsky and the collective group of Team Orlando assigned the concept of the ripple effect. How would we create – and fulfill – the vision of these caring people?

The blank wall

As a liver recipient, the mission to honor donors resonated deeply. I sketched a few designs but the painting that was ultimately selected came together quickly. I named the painting “the Odyssey” in honor of my beloved physician, Dr. Michael F. Sorrell, after something he said many years ago.

The Odyssey. The droplet signifies the act of donation, which triggers the ripples to begin moving. Like water, emotion runs deep, with each ripple representing the different aspects of the donation and transplantation process.

Dr. Sorrell is now retired, but in 1994, he saved my life. I was an eleven-year-old child with an undiagnosed disease. I went from being a healthy kid to deathly ill and spent a year bouncing through countless doctors and tests, to no avail. My parents had heard of Dr. Sorrell, and although he did not typically deal with pediatrics, agreed to see me. My family traveled to Omaha, Nebraska to meet him, and I was finally diagnosed with Budd Chiari Syndrome. Due to the advanced state of my disease, I learned that I would need a liver transplant to survive. I’ve always appreciated Dr. Sorrell’s kind but matter-of-fact way of speaking, and he described the transplant experience as an “odyssey”. In all the years that have passed, I’ve yet to find a better term. This odyssey begins as a patient, hoping you’ll qualify to be listed, despite that your opportunity at life means tragedy for another. Then the call comes that the transplant team located a match: you’re simultaneously so many emotions that it leaves one breathless. It’s an experience in extremes.

My painting is a simple design: a cascade of ripples that are created by a single water droplet, comprised of a bold but limited palette of blues against a bright white background. The water droplet represents the action of an organ donation, and the ripples are all the lives positively impacted. Some ripples will be organ or tissue transplant recipients, some represent organ donors. There are eight definitive ripples that represent the eight transplantable organs.

Darren and I contacted an organization called Intermedia Touch to take the second part of our idea to fruition. We wanted to fulfill the message of the project through means of a digital and interactive product. This piece is especially unique in that while it resembles static artwork from a distance, it is live and interactive on a 70” monitor. The painting was animated so that the water droplet falls, causing the eight ripples to move. As viewers approach, they’ll notice the soft sound of water moving. Users can touch any one of the eight ripples to learn about organ or tissue donation, to dispel the common myths and misconceptions about donation and transplantation, to register to become a donor, or to register for the GR8 to DON8 race. The piece honors donors by allowing families to recognize their loved ones in the Heroes gallery, where they may share up to five photos as well as video. It is a place where families can honor their loved one and by sharing their story, hopefully pass on a message of hope to others.

The project went live January 7th at Orlando Regional Medical Center. It will be officially revealed in April for Donate Life month.

The painting remains in constant motion

Meanwhile, I have been trying to put The Odyssey into words:

The Odyssey.

IV’s embedded: in your hands, the tender flesh at the crook of your inner arm, in your neck, a port in your chest.. they go on.

 Labwork at 4am, or some timeframe like that; the phlebotomist going in before you can fully wake, lights suddenly on, elastic tourniquet snapping around your arm, searching for and hopefully finding an irritable vein.

Transplant Team arrives, you get bad news. They leave in a flock-like formation, white coats, sympathetic smiles and heads nodding. An hour later, the door bursts open, a uniformed aide whips a wheelchair into your small room. They usher you out of bed, filing your attached IV cart in sequence with the awaiting chair. They wheel you and your IV down the hallway, into an elevator, and into a freezing cold, darkened room. A tech awaits with an ultrasound, CT or MRI, or some machine. You cooperate as they direct, the test is performed, and you come and go. An aide rolls you back to your hospital room. As you ride through the crowded hallways you notice that most people do not look at you, or make eye contact, with a person in a wheelchair.

You take a moment to recognize your own slim, jaundiced face in the mirror of your hospital room bathroom.

The hospital at night, quiet finally falls, the pace slackens. You try to sleep.

But the worst.

Beyond any physical pain or anything a patient endures;

Is watching others watch you.

Seeing the effect it has taken on the people you care about, that care for you. You identify sorrow, grief, deep worry, bone-deep fear.

There are no plans for the future. A baby shower for a baby you hope to live to meet; an engagement party for your best friend — and she asks you to be a bridesmaid. I think to myself, I hope I am still alive to see my best friend on her wedding day.

And then the call comes, perhaps the most significant in your lifetime: we found a liver, it’s a perfect match for you. In disbelief — As the news washes over you, you realize with your heavy, heavy heart that another family has arrived at their darkest hour. It is a surreal feeling; you are being given a chance.

Despite the heartbreak and pain, something miraculous is taking place. So many people come together, no matter the hour of day, they rise to the occasion, they are at their best. An orchestra plays beautiful music.

You wake on the other side. You have crossed over.

A new kind of fight begins: The journey to recovery: who knows what life will become? Will life be like it was before all the illness and pain?

It will be better; Each day, you strive for that. It’s difficult, there are setbacks, but there is the victory that you are on the other side and you can look forward to things again. There are lots and lots of small victories, like the first day in months that you can sit properly at a table and enjoy a simple meal with your family. There are the first stairs you ascend, wobbly and quite weak but determined.

Is He okay? I made a pact, took a vow, that I am going to be the Guardian of this new liver, and I’m going to LIVE!

So many put their hearts into saving your life, so go LIVE your life, gratefully humble. ion(e){retur

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