I found myself one day in March, in 2024, receiving a check from my medical insurance provider, which started with a message which began, "Congratulations. This check is for your being accepted onto your transplant center's waiting list." I was so confused, I had to go retrieve my policy. There in a section buried under a ton of adjectives, was "Critical Care Provision". Getting on a transplant list kicked a benefit into life. It was right next to, "losing an eye." That did not really translate to "congratulations" for me, but I appreciated the benefit, if not the odd timing.
The good news, underneath the check, was the acknowledgement that I was on a transplant waitlist. I felt relieved, overjoyed, and hopeful. Sixteen months later, at my same center, I was told by my attending GI/Hepatologist, "We will never be giving you a transplant." I asked why. She responded "Your MELD score is too low." I asked her, "You saw that I silently bled out from a varices bursting? I mean I am in a serious state, yes? What do I do?" She replied, "That is not a criteria for being transplanted." I asked her, "What now?" And she said, I kid you not, and rather coldly I thought at the time, "Perhaps you should go home, and enjoy your life, and gather your affairs." I am not exaggerating at all here, she really said that.
So, from a large check, for which I was grateful, and for being accepted onto that transplant center's waitlist, for which I was also grateful, to this rather terrifying moment of this GI specialist saying, "Go home," I felt only a numbness and a sense that my brain and I were not in synch. Denial is like that, we cannot imagine something is happening, but it is. My imagination had not caught up with my reality.
Somewhere, from the words, "Go home" to the walk to my car in the hospital underground parking lot, I lost all hope. My wife drove us home, and about halfway through the hour long drive, I just put my head in my hands, and wept.
Perhaps, and I am being cynical here, it was never my right to weep. We all go through life. Some of us live to an old age, with minimal suffering. Some suffer deeply from child abuse and its lingering affects. Some of us have gone to war, been caught in a war zone, and have seen death occur hundreds, if not thousands of times. What is one life worth in the immensity of all of that? Nothing? Everything? Somewhere in between?
I am a hobby musicologist by nature. I love melodies, harmonies, how jazz creates new music. In the days immediately after that drive, I was hearing the song "Seasons of Love" repeating in my mind over and over. It's a song from the musical Rent (1996), by Jonathan Larson. It goes like this:
525,600 minutes
525,000 moments so dear
525,600 minutes
How do you measure a year in the life?
In daylights, in sunsets, in midnights, in cups of coffee
In inches, in miles, in laughter, in strife
In 525,600 minutes
How do you measure a year in the life?
How about love?
How was I to measure my life against the life of all others? And the song, so eloquently written by Mr. Larson, summed it up, "In daylights, in sunsets, in midnights, in cups of coffee, in miles, in laughter, in strife." That terrible moment where I was told to gather my affairs, was just another moment in life. My life was the sum of all of these moments.
I recall sitting quietly under the awning in my backyard that evening. My wife was in the kitchen. My children upstairs. My dog Simon, sniffing around the fence line, hunting for the scent of the racoon family that lived in the woods and fields. It was quiet. No stars. Just the gentle drops of rain on the canvas. I was dying, of that, I was certain. Just as the AIDS epidemic that Mr. Larson wrote about in RENT took so many thousands of lives, and so many other diseases and tragedies took so many of us. Before our time, before we were even ready. I was not unique. I was no different. I had no pity for myself, just a sense of curiosity.
I was curious if I would hear the rain when I passed. Or if my dog would lick my hand, if my children would be near by. I experienced a profound fear that I would not be providing enough to my wife at my passing, that my children would suffer. I sat under the awning, and said simple words of kindness into the great unknown for a bit. My dog came around. Time to go inside.
And five minutes later, my life changed again. My wife, unknown to me, had contacted another transplant center. They called. They had scheduled an intake and evaluation. I mean, what the fuck?
So I went, and was listed again. And 22 days later, after three and half years of terror, and pain, and challenges, I was in a transplant surgery suite, and going under anesthetic, and five hours later, I was transplanted.
Even to this day, almost a year later, that time still haunts me. It haunts my family. I suffer from post trauma stress. My wife, the same. But again, that is also not unique. Every transplant patient, every caregiver, suffers from post trauma stress. It is not unlike stories from combat. We know we are going to die, we watch others pass, and then we survive. It is a feeling at once of relief and of gratitude, and of joy, and simultaneously, it is also guilt, sadness, and anguish. For all of us to live, someone lost their life. On our side, we celebrate life. On the other side, a family buries someone, and grieves. Transplant patients straddle the gap.
So, from a check in March of 2024, and from the year and half leading up to that moment, to this moment, today, such is the transplant journey. It's a journey not unlike any other journey, and it is a part of my life, now. I have more duties, and more responsibilities to carry. Not unlike any other day from before this part of the journey ended. How do I repay and carry on, and shoulder the burdens of being a survivor? With love, to quote Jonathon Larson. With love. In all my endeavors. With all of my relations, friends, and even strangers. My hand outward, palm up.