Living in the Dying
When I met J, I was a bitter eleven-year-old who wanted a chance at remission.
How do you live when you know you’re dying?
With blood clots in my lungs and an oxygen tube pressed against my nose, I asked the question no one dared to voice, “Can I die from this?” I assumed the diagnosis was bad. The doctor had already ushered my parents out of my hospital room to speak privately. I simply wanted to know how bad the diagnosis really was. I wanted to know if I might die before seeing my twelfth birthday. Without even hesitating, the nurse replied, “Yes.”
Down the hall was a dashing teenage boy I’ll call J. He was charismatic and daring. In the middle of the night his friends would sneak him out of the hospital and take him to Whataburger. They would practically perform concerts as they played Rock Band in his hospital room. J’s kind voice and inviting personality had everyone wrapped around his finger. Nurses would come to his room just to listen to him tell stories about his adventures. “I was so close to the stage at the Keith Urban concert that he sweated on me,” J would reminisce as he showed off his photos. The nurses swooned. He was an eighteen-year-old who loved to live, yet he was dying. He was diagnosed with leukemia a few months before his mother’s funeral. He had just watched her die from a different type of leukemia and now he was face-to-face with his own mortality.
I grew up with kids like J as my neighbors. They sat with me in the hematology/oncology waiting room. They would play until their bodies were too exhausted to continue the fun. They decorated their hospital rooms with signs proclaiming how many treatments would (hopefully) lead to remission. They were living. They were dying. They were fighting. Remission was like a road sign in the distance, calling them away from their suffering and to fight for something better. The hope of remission often fueled them to live courageously in the midst of the dying.
When I met J, I was a bitter eleven-year-old who wanted a chance at remission. But I didn’t have cancer or leukemia. I had a rare birth defect that caused unpredictable and unpreventable health complications. Remission wasn’t a road sign on my path. There was no hope for less pain and suffering. I would never arrive at a day where my doctors would say the magic words I longed to hear: “Congratulations, you’re free.” If I was going to live past my twelfth birthday, then the best outcome I could hope for was “symptom management.” I could watch the kids around me run and jump and play, but I wouldn’t be allowed to participate. I could go swimming in clean water, but people would stare at my bruise-covered legs and stomach, a side-effect from the shots that would keep me alive. I could hear the tales of amusement park adventures, but I would never know what it’s like to ride a roller coaster. Symptom management would be like living in a glass room. I could watch everyone else live unhindered, but I would be confined to a tiresome life with as little danger and adventure as possible. Death seemed more appealing than a lifetime of just managing the suffering.
Kids like J were fueled by the thought of getting better and going home, but I wasn’t like those kids. I didn’t want to go home because my house would be a reminder of the life I wanted but couldn’t have. My bedroom would display all of the trophies from sports I could no longer play. My backyard would include a trampoline I could no longer jump on. My kitchen would now have an entire corner dedicated to needle and syringe disposal. Walking through my front door would force me to see that the life I once lived was now out of reach. I could attempt to grasp at the childhood I desperately wanted, but I would have to watch it slip through my fingers as adulthood was placed in my hands. My house would no longer be my home, the place where I grew up. Children’s Medical Center would be my new home, the place where I would learn to navigate my new life.
As I became friends with J, I learned to see the difference in existing and living. I was merely existing in the suffering, but J was somehow living. He too was navigating a new way of life, yet he embraced the life he never asked for. His diagnosis couldn’t confine or define him. I often wondered how he could suffer so much yet remain so steadfast in his pursuit of abundant life. It wasn’t until after we parted ways that I learned his secret to living in the midst of the dying.
Right before I was released from the hospital, J gave me several bracelets that had been created as a fundraiser for his leukemia treatments. I remember seeing “Joshua 23:3” printed on the bracelet band, but I didn’t look up the verse. I didn’t even think about the bracelets until one of my trips to Children’s a few months later. The day seemed so normal until I heard the news that left me numb. “J is back in the hospital, and he isn’t doing well.” I assumed his leukemia was to blame, but that wasn’t really the case. He was dying because he wanted to live. After J and I were released from the hospital, he and his friends decided to enjoy a nice summer day by jumping in the lake. Little did they know, J’s immune system was too weak to fight the infection he would acquire from their fun in the sun. He would die living.
When J died, I finally looked up the verse on the band. Alone in my room, I quietly read the verse and it left me weeping. “And you yourselves have seen all that the Lord your God has done to all these nations for your sake, for it is the Lord your God who has fought for you.” This reminiscent verse in Joshua 23 looked back on how the Lord had fought for his people and upheld his promises to them. It was a remark made at the end of Joshua’s life as he exhorted Israel to be faithful to the God who had not forsaken them. I wept as I realized J didn’t merely utter those reminiscent words at the end of his fight. Instead, he proclaimed them as he marched into the battle he would ultimately lose. He chose that verse for the bracelet at the beginning of his battle with leukemia. He knew that even if he didn’t survive that battle, he had already seen the Lord lovingly fight for him. That verse was his anthem, his secret to living well in the midst of the dying.
J already knew what I’m still learning. To exist is a gift, but to really live is often a choice. J’s existence certainly wasn’t easy or painless, but he chose to live in the midst of his suffering. He didn’t merely spend his days breathing in and out, but he often reached out and drew others in. He was a light in a dark world, leading others to the one who had not forsaken him. He was a depiction of suffering well as he refused to waste the gift of existence. He knew what so many of us learn as we come face-to-face with our own mortality. We’re most courageous when we know we’re dying, yet we live anyway.
