I watched the basketball game on mute, listening for sounds of life. The Cleveland Cavaliers looked listless in their Christmas Day matchup against the Golden State Warriors. The two teams were on clearly opposite paths: the Cavaliers, beset by internal tensions, were trying to keep up with the record-setting Warriors, whose offensive talent made basketball frequently look joyful and unfair. My thoughts were less on the game and more down the hall. My mom sat in the chair across the room, similarly quiet and listening. Down the hall, in the bedroom I grew up in, the pneumatic pulses of my dad’s BiPap machine were occasionally joined by his murmurs. We were listening for the end.

Christmas 2015 was three years after he first started noticing the symptoms that would be traced to ALS. He and I had traveled to Brooklyn to see a basketball game in the Nets’ new arena. He had worn a brace over his foot and inside his shoe to keep his right foot from dropping as he walked. The right foot was the first thing affected by the disease that would take over his body. The foot became the leg, then the legs. He stayed walking for a while by using his back to help pivot his hips, but that exhausted the back muscles.

Then came the cane, the walker, the scooter, the wheelchair, then the bed. The upward movement of the disease touched his lungs, causing him to save his words and to increasingly use the BiPap machine to assist his lungs in getting enough air. But it was only a matter of time. Sooner or later, the lungs give out. A respiratory therapist, my dad would die at the hands of the organs he treated and healed for thirty-five years.

The first thing you notice about a BiPap machine is its two hoses: one connecting the air pump to the humidifier and one connecting the humidifier to the face mask. My dad joked about the hose resembling an elephant trunk, which was wonderful for making him less of an object to small children who didn’t understand why their uncle looks different or seems tired. And we could also joke about how being hooked up to the hose—“like having a leaf blower strapped to your face,” he said—reminded us of the video of the small dog looking and sounding like a hellspawn when in front of a leaf blower. I’d pull up the video on the iPad and swing around so he could see it with me, his neck muscles also too exhausted to lift or turn his head much. As I pulled close to the bed, I caught a whiff of dying rooms. The in-home nurses help, but there is no masking the scent.

But he’s still here, you constantly remind yourself. A life is a fragile thing, and his is breaking. Two weeks before Christmas, my mom returned from an errand to find the face mask off and him tangled up in the cords of his face mask, gasping for air and turning color as he grasped at something. She rushed to re-fix the mask on his face, crying as she asked him what he had been trying to do. A week earlier had stopped making sense or talking much. His mind was somewhere that we weren’t. Was he trying to end things? Was it a mistake? Did it make a difference?

With this freshly in our minds, we stayed vigilant through the holiday. We traveled nowhere and saw no family, instead listening for unusual sounds coming from the bedroom, glancing back every so often to hear what was happening and switching (quickly) the humidifier tank when it was empty. Nothing was happening. We’d seen things that felt like the end before, but this time we felt the moment approaching.

The next morning, at 6:35am, I heard my mom move around downstairs to check on my dad. There were some indistinct sounds, so I went downstairs. My dad was staring at the ceiling, glassy-eyed, my mom holding his hand, in tears. “He’s going, Ty.” I grabbed my dad’s other hand, hugged my mom with the other, and started crying myself. “Go home, Dad,” I choked out. “You’ve finished. You’ve run well. Go home.”

We felt him pass as the BiPap kept pumping. After a minute, I turned off the machine. Then we heard the silence.

***

For over a year, the beeps and whooshes of devices had helped keep my dad alive. Breathing, moving, washing, even the sound of an iPad speaker played loud enough for him to hear when he lacked the strength to hold it: all the noises were suddenly, finally silenced.

After a quiet breakfast at the Piston Diner, we started the funeral arrangements. I handled the majority of them while my mom went to be with her mother, who had taken a turn for the worse after a stroke three months prior. Her mother passed away the next evening. Within forty hours after Christmas, I had lost my dad and my grandmother; my mom, her husband and mother. At the second burial within a week, the kindly funeral home director said to us, “Don’t take this the wrong way—I like you people, you seem great—but let’s not do this again next week.”

After the second burial, my mom and I left for the small town of Jim Thorpe, PA, for a few days. “The Little Switzerland of America” draws visitors throughout the year for recreation, tourism, and retreat, but it was deserted in a NEPA winter. Trudging up a mountain by the Asa Packer Museum was accompanied by frigid cheeks, whistling gusts, and silence. We took in the local wildlife rehabilitation center, where we saw animals that had been healed but not enough to re-enter the wild. The bald eagle greeted us after the first corner with an unblinking eye. It didn’t seem to regard us or know what to do. Our conversations with locals went similarly. (Announcing that you’ve just lost your two closest living relatives within the last week tends to end conversations quickly.) The conversations in Jim Thorpe continued the pattern of conversations we’d had for the last three years. Our friends meant well, but there was no way to share what we were going through and not watch them slowly melt in anguish in front of me.

I got used to giving a press conference about our family: Things are tough. Dad’s been feeling a bit weaker recently, but we’re getting through it. We’ve been able to find help, and God and our friends are still good to us. Thanks for asking. Next question? These conversations continued for a year after the deaths. Our friends wanted us to be ok (and so did we), but after having to hold together and stay on task for three years, everything that’d been held back was going to come out in some awkward way that people wouldn’t know what to do with. It was either hold back and deal with the pain we felt silently or be honest and deal with the pain we commuted in the silence of others. We usually chose the former. We’d gotten used to it.

Going back to work and re-settling into the normal hum and rhythm of life helped, but you feel somewhat out of body doing them. People know that you’re different, and you sense that your relationship to them has changed. You know that you’re different, and you wonder how. The year of “First [blank] without”s goes by and then people finally stop asking how you are or saying it must be hard for you. You’ve hit your time allotment. The world must go on.

***

I’ve been thinking about my dad recently, and not just because it’s been five years since his passing. As a healthcare worker who specialized in lungs, my dad would have been working extremely close to COVID. One of the biggest fears of my mom and I throughout my dad’s ALS was that we would bring a disease home and pass it on to him when he didn’t have enough strength to fight it. That mercifully did not happen, but the conversations about COVID comorbidity have brought some flashbacks.

The forced isolation of holidays have also been reminiscent of what we experienced five years ago. Watching the silent, anxious suffering of others facing the reality of death and disease has made me feel old. I know what it’s like to prepare for its arrival, to deal with it as it passes, and also to face the other side—but now I am watching another’s experience of it, playing like a recording of me.

My dad always preferred acute care to chronic care. He liked being able to fix someone, to see them healed, and to move on to help another. Chronic care is different. A fix takes years, if it happens at all. For many, there is no “back to normal,” only a fight to maintain what’s left or to hold on to as much of life as possible until the end. It takes a different strength to do chronic care. The muscles used in lifting a rock and throwing it aside may be the same as the ones used in carrying it a mile, but they must be conditioned differently. You have to get used to the burden multiplied by time. Similarly, enduring COVID requires a reorientation of our normal approach. Even if the vaccine works (and we earnestly pray that it does), it will take time to roll it out. We have farther to go. We must learn to suffer well.

Suffering well involves more than just gritting our teeth; it requires a steadfast, earnest pursuit of a well-lived life in the reality of a world marked by the curse of death. Suffering imposes limits on us, or at least reminds us of the limits we often try to ignore. It re-frames the world for us, helping us step outside our own narrative and see our place in the universe properly. We recognize the preciousness of life and protect the silver thread as much as we can. We recognize the importance of fellowship and community and seek to build our relationships with others. And we long for an end to this present evil, to when we will be restored to full fellowship with God and man, when we will be able to see the shape of this story.

That hope is precious but also implies that there is a need to hope. The world is not as it should be. Earth’s joys grow dim and its glories pass away. Sometimes, it takes a virus to remind us of that. Other times, it takes two deaths the two days after Christmas. Or maybe it’s just the accumulation of things from daily life, the decision fatigue of having to adjust every week during an uncertain year or having to have challenging conversations in a small digital frame with a blurred background instead of three feet apart in the flesh.

It was into this world that our savior came, taking on flesh, to wage war against death.

***

The advent season looks forward to the birth of Jesus. It is that moment, when God descends to Earth and is made in human form, that alters the universe. The one who has given us life takes up life as one of us. Hereafter, he knows our sufferings and frailties. He experiences the agony of death but breaks its power, rising from the dead as the firstborn of the new creation. Soon he will come again, with glory, to bring us into that new creation. The way of our glorification begins with God becoming a human. We look forward to celebrating the birth of our savior, knowing that it has led to the greatest suffering the world has known but that it will lead to the greatest glory the world has ever known too.

Truly, this was not necessarily. The God who created the universe did not need to experience life as a human in order to bring many souls to glory. But he did, and the incarnation begins the work of remaking the world. The wall of separation between a holy God and a sinful people is broken down. We glimpse beauty as we read of Jesus healing the sick, raising people from the dead, feeding them, giving them things to celebrate and be merry, and walking on water. Jesus’ ministry involves physical actions as well as teaching. His vocation was as a carpenter, not a bureaucrat.

And it is Christ, our elder brother, who gives us an example of how to live through his life and work. That example involves suffering, as Paul makes clear throughout his letters: “We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. So then, death is at work in us, but life is at work in you.” Paul writes to a church that has grown comfortable and believes that it does not need his suffering-heavy gospel. But to be part of a church involves living among suffering and working for the good of the coming kingdom. We represent the Son of God in his incarnation, who took on the form of a servant, bore our griefs, and carried our sorrows.

As Dietrich Bonhoeffer wrote, “When Christ calls a man, he bids him come and die.” We are called to this, and (as Bonehoeffer notes) not just alone but with others too. “Bear one another’s burdens, and so fulfill the law of Christ.” This cannot be merely done through thoughts and prayers but must be done with embodied work too. It requires sacrifice and risk, as well as physical touch. To some, this will mean being in the same room and actively listening to someone who’s grieving (bless you, Steve and Kate). To some, this will mean making a meal and delivering it (bless you, Chris and Sue). To some, this will mean self-isolating in order to see an isolated or immunocompromised loved one (bless you, Curt and Lisa). Each person’s act is their own, but all are called to suffer and serve.

During my dad’s sickness and aftermath, one group did not react in silence when they heard us open up, and that was our friends who had suffered. “People who’ve suffered are like rescue dogs,” said a friend. “They just know who their kind is and who they can trust.” Two of my dearest friends had faced a near-death illness twenty years ago when just starting a family. When they came out to say hello and goodbye to my dad a few months before his passing, they listened attentively for his gasped words and knelt before him as they shook and patted his hand, sparing him from having to keep his head up to see them. Others knew what questions to ask—the uncomfortable ones—when to ask them, and how to listen. And our closer circles, even the ones who hadn’t gone through an annus horribilis like us, sought to understand what we were feeling. Watching someone absorb our horror and continue to ask us questions was watching someone give themselves for us as we had given ourselves for others. It was a deep love, one that made us feel less alone.

In the film A Hidden Life, as Franz Jägerstätter awaits execution, he is standing in line with two others awaiting the same fate. One is trembling and sobbing. Jägerstätter touches him, silently comforting him. Throughout the film, we have heard the same question thrown at him by his captors: what will it all be worth? You are one farmer in a nowhere village; what do you think you will accomplish by your actions? Jägerstätter’s last act is one of no lasting significance; in minutes, both he and the man he shows kindness to will be put to death.

But it is an unhistoric act that enters into the man’s world, bears his burden, and makes things not so ill with him as they might have been. It is these acts that we are called to, in any situation, whether death is in the air or not. It is in spending our life in service of our Savior and others that we find life ourselves, more glorious and more enduring than we can ever hope or imagine. It is in living well, knowing that although our outer self may be wasting away, our inner self is being renewed day by day, as we look to the things that are eternal and the eternal weight of glory beyond all comparison. Come quickly, Lord Jesus.

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Posted by Ty Clark

Ty Clark is a product manager at a technology company and ran http://www.thedaliies.org for six years. He lives in New Jersey near Philadelphia.

One Comment

  1. Really well written, thank you for sharing. Those are hard thoughts to consider.

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