A Beautiful Burden: The Story of a Kidney Transplant Recipient

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It was a sunny Californian day when I got the call, while walking on the bustling campus of Biola University. I was closing out my junior year and felt like I knew everything and had forever to know more. All it took was one phone call to destroy that false reality forever. I had been having minor health issues that took me consistently back to the campus health center. And what had they found? I was in Stage 3 (out of 5) kidney failure. I never saw it coming. After further testing, a nephrologist diagnosed me with Alport Syndrome, a rare and inherited form of kidney disease that put me on the fast track towards total kidney failure and a likely transplant.

I thought I was going to die. Granted, medical technologies have advanced to such a stage that my prognosis was not so grim. Yet there’s something about being shaken out of the perception of eternal youth that awakens you to the inevitability of death. I was angry with God at that thought. I was already inching my way out of near agnosticism and now this. I remember pacing back and forth around the small campus garden with tears streaming down my face, audibly arguing with God. I felt entitled to life, to health, and to at least a few years without suffering. Or maybe I was just desperate for such things. Ultimately, death became a familiar acquaintance throughout my transplant journey, and in the years since.

I call death an acquaintance because it became an everyday awareness that life is not an entitlement. I’ve found that to be a key conduit of the peace that is found in opening our anxious grasps to rejoice in God (Phil 4:4–7). This reminder came in many ways throughout the transplant process, yet its greatest avenue was in the receiving of a kidney from another.

For those unaware, the approval of a donor is a complex process. It requires balancing the health, well-being, and informed consent of the donor with the dire need of the recipient. I cannot tell you how many times a friend or family member sought to be such a donor, only to be denied through either the interview process or further testing. I cried with some of these people. Not merely because it meant the lack of a kidney for me, but because of the grief of these dear friends and family who loved so deeply that they were distraught over being unable to give such a gift. It was the very fact that they were offering freely and independently, and my complete dependence on their generosity, that made this period one of the most tangible experiences of the love of Christ that I have encountered. These people didn’t owe me anything. I was entitled to nothing. Indeed, this came most fully through the ultimate donation of a kidney by my Aunt Katie and through my family who were present with me at every stage of the transplant process. It also occurred through those who contributed financially and through prayer.

Another reminder that life is not an entitlement came in the first few weeks after the transplant. There were complications during the surgery process. After completing the initial transplant and wheeling me back to my room, doctors noticed that my kidney function was plummeting fast. In the middle of the night, my transplant team rushed back to the hospital to perform another exploratory surgery. What had happened? A blood bubble had built up around my new kidney and was choking it. This initial trauma to the kidney made the healing and transition process more difficult. Had the damage been too much? Would the kidney last? I remember one particular weekend in which my numbers were getting worse. The doctors informed me that they were concerned about the possibility of kidney rejection and wanted to perform another biopsy. I went to church that Sunday with the implications of rejection swirling in my mind. That would be it. Dialysis. Another long search for a donor. That TEDS PhD program, for which I had been accepted, would need to be dropped. As these thoughts hit me like bullets to my hope, the worship team started playing “All I have is Christ” by Jordan Kauflin. As they sang “Hallelujah! All I have is Christ; Hallelujah! Jesus is my life,” I collapsed in my seat and wept. That really was the point, wasn’t it? Could I let go? What if all I had really was Christ? Would he be enough? Holocaust survivor Corrie ten Boom is quoted as saying “you can never learn that Christ is all you need, until Christ is all you have.” I cannot imagine the extent of her suffering, but I know the Christ she experienced.

Such gifts in the midst of pain represent the phenomenon of collateral beauty. Collateral Beauty (2016) is a film directed by David Frankel and written by Allan Loeb. In the film, Howard Inlet (Will Smith) traverses the grief of losing his young daughter as he interacts with personifications of death, time, and love. Throughout its duration, the various personifications assert that death gives value to time, time is a gift not to be wasted, and love is manifested in both the having and the losing. Thus, collateral beauty, in contrast to collateral damage, is the gaining of something beautiful through a tragic event. While I do think the movie sometimes breaks its own rules (e.g., the sometimes cookie-cutter answers the various personifications give), it represents well my own experience of the necessity for grief amidst tragedy and the theological malnourishment of over-simplistic platitudes in the midst of pain while at the same time discovering the hope found in worshipping a genuinely good God who yet gives good things.

Indeed, I do not call death a friend because I’m daily reminded that death is not good. This is ritualistically hard-wired into the experience of a transplant recipient. Every day, morning and evening, I take immuno-suppressant drugs that keep my body from rejecting the kidney and bringing the possibility of death back to my doorstep. After a long battle with our medical system to have my medications covered financially, I can tell you I have shed many tears over the possibility of not having these lifesaving medications and needing to reorient my life around the fear of death once again. Further, as a transplant recipient, you do not have the luxury of time and testing, of merely finding out how such things as Covid or even mild infections will affect your body. The trauma my body went through during the surgery and the weeks after is hard-wired into my memory and certain smells and visuals can bring it all back in a moment.

All of this points to the fact that embodiment—or the reality that the lived body and the soul/self are necessarily intertwined[1]—becomes a complex experience when your body becomes your own enemy. Physical realities affect spiritual ones. Indeed, embodiment assumes that God created the body as inherently good, and the goodness of the body is reflective of a good God. Thus, when the body manifests the consequences of the fall more tangibly, psychological and theological consequences are similarly felt. In a song that deals with the trauma a child goes through when abandoned by a parent, Christian artist Sleeping at Last writes, “Forgiveness is the lesson he cursed you to learn.”[2] In a similar vein, those who taste death and suffering know the curse of needing to walk the long road of finding hope amidst fear, joy amidst sorrow, and trust in God despite living in a world broken by sin. I pray that I would steward this beautiful burden well—that I would grieve what needs to be grieved, preach the goodness of God as distinct from my experience of brokenness, exemplify the power of Christ in my weakness, and rejoice at every evidence of God’s providence. And I pray that you, as the everyday people of the Church, would join me in that endeavor, whether it be through your own burdens or in walking with those whom God has gifted you.

Notes

[1] Note that I provided a phenomenologically oriented definition of embodiment. This represents a more recent movement in understandings of embodiment.

[2] Ryan O’Neal, “Uneven Odds,” Atlas: Darkness (2013), https://www.sleepingatlast.com/darkness.