My father died six weeks before my fifteenth birthday.

By the time my birthday arrived, I had learned that the virus that killed my father resided in my blood as well. There was no cure. My body might miraculously figure out a way to develop the necessary antibodies, but this occurrence was relatively rare. In all likelihood I would have to live — and eventually die — with the presence of the virus.

At a time when my world was already collapsing from grief, I filed away this piece of information with minimal processing. I couldn’t think, couldn’t consider. I could only feel grief that tore away at every part of who I was.

Neuroscientists say that adolescents don’t yet have fully formed or well-connected frontal lobes. Their brains simply can’t create or fire all the neural signals that adults in their mid-twenties and later can. As a result, most teens have trouble considering the consequences of their actions. They make rash decisions. They see life as a canvas of limitless opportunity, potential, and time.

My canvas was shredded before it even had the chance to be filled. I had been told that faith and prayers, alongside medical intervention, comprised the magical formula that would save my father’s life. Now human existence, rather than being limitless, seemed only full of disappointment and cruelty. And God seemed the cruelest of all.

I hadn’t even finished my freshman year in high school, yet I felt like I knew death and suffering intimately. I had seen the devastating toll the illness had taken on my father’s body. I had heard his heart-wrenching cries of pain. I had seen the many misshapen bruises on his skin from the tubes and needles that were inserted and removed, again and again, day after day. His suffering would be mine, I assumed, because I knew how both the medical and the divine could fail.

Accordingly, I reviewed the timeline of my father’s life and assumed I had less than thirty years to live. I looked into my future and saw only endings.

It seemed that the difference between sickness and health, between death and life, balanced on a knife’s edge. One day my father was fine; the next, he was going to the emergency room with debilitating pain. In the end, only three months separated him from seemingly perfect health to incessant internal bleeding and complete organ failure. If but one of the missed opportunities and failures during those three months — the misdiagnoses, the inconclusive tests and scans, the ineffectual treatments, the indecision on a possible organ transplant, the reluctance to refer him to a specialist hospital — had gone in a different direction, my father might have been alive instead of dead and buried. For incomprehensible reasons, or perhaps no reason at all, God did not see fit to give the tiniest of nudges to tip the scale toward life.

I learned then that little more than a veil separated breath and stillness. One day, I was a healthy — grieving and emotionally shattered, but physically healthy — teenager. The next, I was hearing words from a doctor that could have been anything from a warning to a death sentence. I felt fine, but a medical professional was telling me I wasn’t. The virus might fell me, or it might be the cancer that I was twelve times more likely than a non-infected person to develop. 

A new, pressing question pulsed in my being: When might that veil tear?

Only three years after the death of my father, my paternal grandfather died on the operating table as surgeons attempted to remove the large tumor spurred by that same virus. He had waved cheerily as he left to go to the hospital. He felt fine and was certain all would be well. “I’ll see you in a few hours,” he told my sister and me.

As soon as the door closed behind him, I burst into tears. “Why are you crying?” my sister hissed at me. Our family members had just concluded a heartfelt prayer full of faith-filled bravado. Faith and fear, hope and sadness were not supposed to co-exist in that moment. But I knew. I knew about the cruelty of God, and I knew the veil was about to tear again.

Two generations of family members killed by the virus that had been passed silently and unknowingly from parent to child, and now to grandchild. Perhaps there were others, in generations before, who had suffered the same fate, but my ancestors lacked the medical knowledge to recognize it. Illness was a part of my family legacy. And it was a part of me before I had even taken my first breath.

This harsh knowledge has shattered an illusion that many people, especially those who live in more privileged contexts, can stubbornly adhere to. We would like to believe that we can be completely healthy, but there is no such thing as a perfectly healthy human body. To be human is to be living and dying, healthy and sick at the same time. “Health is relative,” said Theodore Isaac Rubin, a renowned psychiatrist of the twentieth century. “There is no such thing as an absolute state of health or sickness. Everyone’s physical, mental, and emotional condition is a combination of both.” This is the reality of being human.

Prior to our twilight years, many of us probably don’t live with an ongoing understanding of the ways in which our bodies are failing. This liminal space has been my embodied reality since my adolescence. I am healthy, and I am sick. Recent medical advances allow me to take medication that suppresses the virus. But if I ever went without it, the risks to my body could be severe. I have no symptoms and experience almost no limitations — until I do, and then I am jarred back to the reality that I am unwell.

This awareness of my own mortality has accompanied me from high school to college, from singlehood to marriage, from jobs to parenthood. I have felt its presence like a shadow, a whispered reminder that what I have today is temporal. I have experienced days of intense fear and anxiety that my father’s and grandfather’s fates would be my own. I have felt embarrassed and ashamed when blood banks have refused to accept my blood and insurance companies have refused to provide me life insurance. I grieved when my newborn babies had to be immediately inoculated after birth, before I could even hold them for the first time. I have often asked, “Why, God?”

As the years pass, what began as the cruelty of a disconnected and distant God has morphed into something far more complex and mysterious. My understanding of who God is showing himself to be through my inherited illness is akin to mist: ever moving, altering, and just beyond my reach. Some days I see the faintest outline of a possibility; other days, I see nothing at all.

While I do not yet have an answer to why my family has experienced generations of sickness and suffering, I am beginning to have a tenuous grasp on how this has shaped me. In this perpetual sojourning between health and sickness, the arc of my life has been altered in profound ways. Who I am today is in large part because I lack confidence in tomorrow. “What if the vulnerability and limits we experience in illness tell a truer story about who we are than the invincibility and limit-pushing confidence we feel in good health?” asks writer and journalist Liuan Huska in her book, Hurting Yet Whole: Reconciling Body and Spirit in Chronic Pain and Illness.

Social scientists have found that merely thinking about mortality can change how we behave. University of Missouri researchers, after reviewing dozens of studies, found that thoughts of mortality — whether prompted by questions, overheard conversations, or just the sight of a cemetery — caused people to feel more connected to others and to act more altruistically.

My losses — of loved ones and of my own sense of health and invincibility — broke my heart. But they also broke my heart open. I had lived a very sheltered life up to that point. Suddenly I began to see how I was connected to strands of humanity, everywhere I looked. I had lost, as so many others have. I was unwell, as so many others are. I could not do or be everything through hard work or sheer force of will, and neither could anyone else.

My diagnosis has made me more human and more humane. I used to think some measure of perfection was attainable — in work, in relationships, in health. But the seal on the bottle of my life had been tampered with so early on that I have had to let go of that ideal. I recognize that I have limitations and weaknesses. So, too, does everyone else. We are deeply intertwined by our needs and shortcomings, our hopes and fears. We are dependent on one another and on a good, loving God.

Yes, even in these circumstances, I have experienced God’s goodness. My awareness of my condition has, in all likelihood, extended my “one wild and precious life,” as poet Mary Oliver called it. My father lived in blissful ignorance of the slow destruction of his body for forty-four years; awareness, when it finally came, was excruciating and years too late. Because I know — where he had no knowledge at all — I have been able to act proactively and intentionally, taking advantage of steadily progressing medical discoveries. I am regularly screened for any sign of organ damage or cancer. My two children, because of their immediate inoculation, are permanently protected from the virus. They will not pass it on to their children or their grandchildren.

Because I saw death up close, because I have had so many doctors speak to me with urgency, because I have always taken the capabilities of this virus seriously — this painful family legacy ends with me. 

This is not the ending I imagined all those years ago, and I am glad for it.

I am forty-three years old now, just one year shy of what I thought might mark the end of my life. I hope — cautiously — that there will be many years more.

In peculiar ways, I believe I have experienced a kind of healing. If my diagnosis has saved my children from a lifetime of tests, screenings, and risk, I am grateful. If embracing my limitations and weaknesses has made me a more compassionate, tenderhearted person, I am glad for it. If being so familiar with illness has made me a little less afraid of dying, I can’t help but wonder at God’s ability to redeem anything.

But my illness remains. There is no clean resolution to my story. I still live with elevated risk for health challenges as I age, and I still miss my father desperately. I still mourn the terrible suffering he endured. I lament that he never had the chance to meet my husband or our children. But I also remember how, even as a virus silently tore his body apart, he lived a life of tremendous fullness and goodness. How much he laughed and how hard he loved. So too, can I, no matter how thin the veil may be.

Subscribe to The Mockingbird today and receive Sickness & Health as your first issue!

COMMENTS

---

One response to “Healthy While Sick”

1. Derek Townsend says:

   04/03/2023 at 12:23 pm

   Thank you so much for this. What a beautiful reality check for us all. Reading this has been a gift.
   Well done.

   Reply