Marching Forward: Finding Meaning to Life in the Face of Death

A philosopher with brain cancer and a scientist who studies brain parasites walk into a coffee shop and try to figure out the meaning of it all.

By Adam Hayden and Bill Sullivan

The alarm goes off, and Adam Hayden rises.

With his wife Whitney, they dress their three boys, stir their oatmeal, and plan how to get one to soccer and another to art class. They are working to create a childhood for the kids that resembles normalcy.

But it isn’t.

It isn’t normal.

Whitney must drive Adam to the hospital for a brain scan, which he must do every two months to monitor an insidious brain cancer that he had removed three years ago. Adam’s cancer is near certain to return, and so Adam must submit to these frequent scans. The scan is complete.

They wait.

They wonder.

It isn’t normal.

Each year in the U.S., more than 1.7 million people will hear the word “cancer” drop from a doctor’s lips. The diagnosis is a stark reminder of our mortality, prompting Death to emerge from the shadows for a face-to-face meeting. Adam has had this meeting far sooner than he anticipated. He stares at the wrinkles on Death’s face and wonders, “Is there wisdom to be read between those lines?”

To learn more about his cancer and the threat it poses on mental health, Adam, a philosophy student, reached out to numerous physicians and scientists. His friend Bill studies brain infections and knows all-too-well how brain injury can change who we are and how we behave. Drawing on their complementary perspectives, Adam (whose remarks are in italics) and Bill discuss brain cancer, its pervasive threat to agency and identity, and what it might tell us about the meaning of life.

“Something strange is happening”

It was the day after Christmas, 2014. I was a healthy, thirty-two-year-old husband, dad, and philosophy graduate student. Whitney and I were swimming in a sea of smiles, seeing the holidays through the eyes of our young boys. I strolled through our home, stepping past the crumpled wrapping paper and opened boxes, soaking up the laughter of our children and the smell of pine and pumpkin spice.

Then I noticed something unusual in my steps. My left foot shook when I set it down. I called to Whitney, “something strange is happening.” Pins and needles crawled up and down my left leg, followed by weakness. The base of my skull began to radiate and drift, as if a helium balloon was tied to the back of my head. Light-headedness set in and I felt like I losing my balance. But after several minutes, the odd sensations passed. I saw my doctor, but she was not overly concerned as routine exams did not indicate a problem.

As the year went by and another Christmas passed, similar incidents like these would occur, but I learned to anticipate the symptoms and ride them out. Then on May 11, 2016, driving in rush hour traffic, the base of my skull tingles and my left arm fell flaccid at my side: this was a new and frightening symptom. I veered into the first gas station I saw and called my doctor, who was concerned that I was continuing to experience these episodes.

I made an appointment and she performed a standard neurological exam: “Move this, tense that, look here.” The monotony of these tests was broken when she ordered an MRI followed by the heart-stopping word, “STAT!”

An hour later, I am pulled from the gaping mouth of the MRI machine. The techs are not authorized to read the results, but they see the images. The stoic tech knew what was happening inside my head as he escorted me back to the waiting room, but simply said, “A physician will call you with the results.”

We wait.

We wonder.

It isn’t normal.

Three days later, Whitney and I finally heard the results from a neurosurgeon. “I cannot believe the person I am talking to in this room is the same person I was just looking at on the brain scans in my office.” He could not believe that my higher-level brain functions seemed unimpaired despite the invasion of a 7cm tumor — the diameter of a baseball — spreading through my brain.

A lesion on selfhood

No one wants to hear the dreaded diagnosis of cancer, but Adam’s tumor is especially concerning because, in addition to controlling motor skills, the brain constitutes our semblance of self. As depicted by the immortal “heads in a jar” in Futurama, our brain appears to be all that is needed to perpetuate our existence and identity.

Historically, brain injuries and infection provided the first clues that this mysterious organ is the seat of who we are. The rabies virus migrates to the brain and causes aggressive behavior. The parasite Toxoplasma gondii, which surprisingly inhabits the brains of three billion people, has been correlated with increased risk of schizophrenia, rage disorder, and neuroticism. The famous case of Phineas Gage, who survived a traumatic head injury while working on the railroad in 1848, revealed that brain damage could alter personality: Gage transformed from a reliable and courteous gentleman into a belligerent brute after his brain injury. Bumps on the head can also cause amnesia, revealing that the brain houses our memories.

An expanding tumor in the brain is just as alarming as an infection or injury. Depending on where the tumor is located, the person we know is at risk of being altered in vital ways. Adam’s tumor was occupying his brain’s parietal lobe, an area responsible for sensation, motor control, and spatial reasoning. The episodes causing dizziness and weakness were “focal seizures,” involving the right hemisphere of Adam’s brain.

The mystery behind Adam’s symptoms had been solved, but the next step ushers in a new worry: brain surgery. As a philosophy student, Adam is keenly aware of the famous declaration made by René Descartes, “Cogito, ergo sum (I think, therefore I am).” Adam couldn’t help but wonder: Who would he be after an operation on the organ that secretes his thoughts and stores his life experiences? Tumors in the brain may as well be a lesion on selfhood.

Selfhood goes under the knife: “I felt like a puppet”

I was surprised to learn that the surgery to remove my brain tumor would be performed while I was awake. That’s right…I would be fully conscious while the surgeons had their hands and instruments inside my head. That way I’d be able to report sensations and respond to commands, which would minimize harm to the surrounding areas of healthy brain. I was in the fortunate minority of patients with aggressive brain cancers who suffered only mild cognitive impairment, and we wanted to keep it that way.

In the operating room, with my head clamped to the table, I watched a monitor broadcast the feed from the surgeon’s operating microscope. The surgeon would press a small electrode into my exposed brain to stimulate a functional area, while a sensation that my lower left limbs were falling asleep shot from hip to heel. The surgeon moved the stimulus to another location and my arm raised involuntarily. I felt like a puppet whose strings were being pulled by the surgeon.

Near the end of the operation, my surgeon said that he had removed as much of the tumor as he could see, but if he continued, it would result in permanent left-sided paralysis. Even though more cancerous tissue would be removed, we decided that paralysis was not compatible with my quality of life as a young father. Recalling the size of my tumor to be the diameter of a baseball, I imagined playing catch in the backyard with my three sons — that was the quality of life I wanted to preserve for as long as possible. So we let the rest of this sleeping beast lie and the surgeon closed my head.

During the surgery, a portion of the tumor was sent to a lab to learn about it.

We wait.

We wonder.

It isn’t normal.

Whitney and I went to see the doctor in person to hear the results. Tests indicated that my tumor is a glioblastoma, which grows like tiny octopus tentacles though the brain. It’s also an “IDH mutant,” which is a “positive prognostic indicator” — good news. The nurse in the room then unfolded her arms, taking my hand and Whitney’s, squeezing them both. I sensed a “but” coming. The warmth of her gesture was almost enough to stifle the chill that followed. “But,” he added, “with glioblastoma, it is extremely likely that you will have a recurrence.”

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An MRI scan showing the surgical cavity left after the removal of Adam’s brain tumor from the right hemisphere of his brain. The lighter areas are inflammation and possible cancer cells that remain.

One small change in DNA, one giant leap for cancer

Cancer is a broad term used to describe cells in our body that won’t stop replicating due to a mutation in one of the many genes regulating cellular division. Radiation, certain chemicals, and some viruses can damage DNA and cause a mutation. In addition, DNA replication is not perfect; as cells divide, mutations can be randomly introduced. As these rogue cells continue to divide, they may accumulate additional mutations that make them grow more aggressively.

Glioblastoma originates from glial cells, which support neurons in the brain. Doctors diagnose 13,000 cases of glioblastoma annually in the U.S. As is the case for many cancer patients, Adam’s glioblastoma probably falls under the category of bad luck — a random hiccup in one of his 85 billion glial cells that introduced a mutation in a gene called IDH1. IDH1 makes isocitrate dehydrogenase, an enzyme that breaks down energy stores for cells to use. Adam’s mutant IDH1 enzyme makes biochemicals that it is not supposed to, one of which is a cell growth-promoting compound called 2-hydroxyglutarate, or 2-HG.

There is a smidgen of a silver lining in having a glioblastoma that arose from mutated IDH1 — this is the “positive prognostic indicator” to which Adam’s doctor was referring. While 2-HG promotes carcinogenesis, it also impairs a cancer cell’s ability to fix damaged DNA. This is useful because the way cancer is treated is a “fight fire with fire” approach. Radiation and chemotherapy work because they cause such extensive damage to the cancer’s DNA that the tumor cells die. Cancer cells making 2-HG are deficient in repairing the DNA damage created by radiation and chemo, making them more sensitive to these treatments. This gives patients a better prognosis; glioblastoma containing normal IDH enzymes that do not make 2-HG are usually fatal within a matter of months rather than years.

“Daddy will not live to be an old man”

The eerie quiet of the brain trauma unit was broken when our boys jogged toward my room. Isaac was five, Noah was three, and Gideon was eight months old when I underwent the surgery. After getting up on my lap, Isaac noticed the forty staples keeping the large incision on my head closed.

“This is daddy’s ‘brain boo boo,’” we’d tell the kids.

Weeks before he would attend Camp Kesem, a camp to support kids “through and beyond” a parent’s cancer, Whitney and I sat with Isaac to explain the likely outcome of daddy’s brain boo boo. As we showed Isaac the family pictures hanging on the wall, we pointed out those who were no longer with us. We led Isaac to say in his words that these family members have died. We then mentioned that our loved ones live on through pictures, memories, and the stories we tell.

How do I tell Isaac that his wall will only have pictures of me as a young man?

“Daddy will not live to be an old man,” I said, through broken sobs.

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Adam and his family photographed at the Virginia B. Fairbanks Art & Nature Park: 100 Acres, Indianapolis, Indiana. Whitney and Adam Hayden seated behind their three boys, from left to right: Noah, Isaac, and Gideon; May 2019. Photo credit: Adam Ramsey

Despite surgical removal of the tumor mass, there is high probability that undetectable cancer cells remain, so doctors try and zap them with DNA damaging agents. For Adam, this included a one-two punch of chemotherapy (temozolomide) and radiation for nearly a year. Unfortunately, this grueling regimen does not keep the glioblastoma quiet forever — the recurrence rate is near 100 percent. The treatment buys patients precious time, but the five-year survival rate is under six percent.

Scientists are trying to identify new therapies for this type of glioblastoma. One strategy is to find a drug that blocks the function of the mutated IDH; it is hoped that inhibition of this mutant enzyme would cease its production of the cancer-promoting compound 2-HG. But it will take years before candidate inhibitors can be examined for efficacy in clinical trials.

“Meaning in a material world”

Nothing challenges our presuppositions about life more directly than when we face our own mortality. I’ve adjusted to my physical impairments by using a cane, but what sort of crutch can help you adjust to the psychological consequences? How does one find meaning amidst a heinous illness?

The common refrain from loved ones and friends is that “everything happens for a reason” — it’s all part of a “cosmic plan.” As a philosopher, I am trained to engage the world with mitigated skepticism and to ground abstract concepts like meaning within the framework of the physical world (a position called naturalism). As a patient, I have become a student of my disease, and as I learn the science, it affirms my naturalistic view.

I could sit and wonder, “Why me?” But given the strong evidence that many cancers arise from random mutations, I reframe the question to ask, “Why not me?” By accepting the “bad luck” hypothesis, I am liberated from the unhelpful feelings that my illness is due to some cosmic plan. With focus on the world I know, I find motivation to do my best work while still able.

But what about meaning? I like the phrase coined by philosopher Owen Flanagan: “meaning in a material world.” Material, in so far as there is nothing over and above the beautifully complex world we aim to understand with our theories, instruments, and experimental design. I’ve come to realize that meaning does not have to involve something beyond the natural world, but instead can be what we make of ourselves in the world we know.

To many, Adam observes his situation through an unusual lens: instead of struggling to find some cosmic meaning behind his illness, he accepts that it was the result of a random, biological fluke. While many seek answers in religion, Adam champions science as the light that burns away the fog. And rather than trying to decipher meaning in something supernatural, Adam prefers to make his own meaning from the natural world.

Science consistently lends support to the naturalistic philosophy Adam favors. Brain injury can fundamentally change who we are, which is an unshakeable argument against the long-held idea that a noncorporeal element constitutes our “self.” Rather, we are a product of our neurophysiology. No one feels this more acutely than people facing neurological anomalies or injury, including brain cancer.

Our brain is an excellent reality simulation device, but not when it comes to facing its own mortality. It rejects the notion of its insignificance in the grand scheme of things because it is demoralizing and depressing. For all we know, our brains invented religion as a coping mechanism to quell such existential crises. After all, why carry on if it is all for nothing?

Because it isn’t for nothing. We simply have the poles reversed: rather than meaning being orchestrated by a Great Beyond, it arises right here from within our flesh and blood. Meaning doesn’t stem from the immaterial, but it blossoms from the material. This does not diminish our ephemeral human spirit, but educates us as to where it may truly originate.

Our brain has gifted us with an ability to discern patterns in our observations. This makes it all too easy to assign supernatural causes to things we don’t yet understand. One could argue our brain is flawed in this sense, but those same cognitive capabilities also gave rise to science, a reliable tactic of systematic interrogation of nature that inches us towards the truth.

Science is the most useful tool that our reality simulation device has created: it makes sense out of nonsense. Appealing to the supernatural, however well-intentioned, is not as effective as rolling up our sleeves and engaging with the real world. Recognizing this fuels Adam’s desire to educate and improve the lives of as many people as time allows. I am hard-pressed to think of anything more meaningful than such an endeavor.

“Is there wisdom to be read between the lines on Death’s face?”

I was forced to confront my mortality far earlier than I expected. It has shifted my priorities, the way I live my life, and my relationships. It has underscored that life is a gift, but not one we get to keep. Healthy or not, no one knows when this gift must be returned. I draw inspiration from this reality with each new day I have, and I encourage everyone to do the same.

Many have asked if being diagnosed with a terminal cancer has turned me toward faith — or undermined it. I am a pastor’s kid, after all, and my commitment to naturalism challenges preconceived notions of faith and religion. I am fortunate to study religion through many frameworks: growing up a member of a faith community, as an undergraduate in many religious studies courses, and as an adult through my personal experience. Common threads linking sacred texts from many traditions emphasize love, hospitality, and care for the environment. While these principles manifest differently for some faith groups, for me, authentic relationships and empathy for others are the hallmarks of caring communities. Serious illness has reinforced my commitment to the importance of human relationships.

Living in my third year of survivorship with a disease that has killed others in mere months is a test of my resiliency — and Whitney’s, too. I am fortunate to still have cognition intact, and I humbly raise my voice on behalf of those who can no longer speak for themselves, as a proponent for biomedical research and improved care. I make my meaning in the practices of patient advocacy and service to advisory councils for brain cancer research — where progress can be made. Rather than blind faith, I march forward with eyes open wide.

We don’t have to wait.

We don’t have to wonder.

We can seek understanding.

The alarm goes off, and Adam Hayden rises.

***

Adam Hayden is a philosopher, writer, advocate, and organizer for the brain tumor community. Diagnosed with brain cancer in 2016, Adam has published on issues germane to medical education, cancer survivorship, and the philosophy of illness, in both popular and academic presses. Adam completed requirements for his graduate degree in philosophy while in active cancer treatment, and he was recently awarded the Distinguished Alumni Award by IUPUI for his work in medical education and bioethics. Read Adam’s personal blog at www.glioblastology.com and follow Adam on Twitter at @adamhayden.

Bill Sullivan is the author of Pleased to Meet Me: Genes, Germs, and the Curious Forces That Make Us Who We Are (National Geographic Books). Sullivan is a professor at the Indiana University School of Medicine in Indianapolis, where he studies genetics and infectious disease. An award-winning researcher, teacher, and science communicator, Sullivan has been featured in a wide variety of outlets, including CNN, Fox & Friends, The Doctors, National Geographic, Discover, Scientific American, COSMOS, Science Fantastic with Dr. Michio Kaku, Doctor Radio, and more. Follow him on Twitter at @wjsullivan and learn more at www.AuthorBillSullivan.com.

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Bill (left) and Adam (right) at the coffeeshop. Summer, 2019. Photo credit: Nipun Chopra

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Bill Sullivan is the author of “Pleased to Meet Me: Genes, Germs, and the Curious Forces That Make Us Who We Are” (National Geographic Books).

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