What You Know vs. What You Believe:
And the dangerous difference between the two
I met Kathleen in a two-year Meisner acting program in New York City, when we were both in our twenties. High-spirited, friendly, with a knockout smile and a goofy Long Island sense of humor, she and I bonded over the vagaries of the acting profession.
We ate Italian at the “Five Dollar Pasta Place,” as she affectionately called it, and hung out on the stony shores of Orient Beach. She was a bridesmaid in my wedding.
Over the next ten years, we shared the joys and woes of marriage, the birth of her two kids and my three, and giving up acting for more generous pursuits — in her case, photography. In mine, writing.
In 2005, a few months after my husband Peter had a routine check-up and was told he had CLL (Chronic Lymphocytic Leukemia), Kathleen called to tell me, her voice quavering, that she had just received her own dire diagnosis: uteran cancer. “I don’t want to die, Mare,” she said. “They’re too young.” We both knew whom she meant.
Thus began a new job for all of us, the daily quest for information. Our sharing now revolved around therapies, books on cancer survival, supplements, recipes, and stories of breakthroughs and cures achieved outside the traditional allopathic medicine model. It was like a crash course on healing.
Kathleen had always joked with me about her brain, insisting that she wasn’t book-smart. But this crisis was changing all that. She was absorbing information as though her life depended on it… which it did.
Peter’s diagnosis of cancer, being of the “chronic” variety, didn’t progress in any significant way. Kathleen’s, on the other hand, was classified as aggressive. Her oncology specialists advised her to have her uterus removed, and then to follow up with chemotherapy and radiation immediately. She agreed to the first part.
She woke up from the surgery and learned that her doctors had been wrong. Her uterus was not cancerous. The malignancy centered in an ovary, but instead of just removing that ovary, they did a radical hysterectomy, throwing her immediately into menopause. Before she had even left the hospital, they were urging her to start the chemo and radiation.
At home, she sat with everything she had learned. Mistrust of her practitioners was creeping in at the same time she was communicating with a cancer retreat center in Colorado that really resonated with her — one that was based in a deep Christian faith and supported the body in healing itself through natural therapies.
She was at a crossroads. Whom to trust?
After her body had healed from the surgery, she and her husband sat down with her doctors for a consult. She described what she wanted to do. Now that the cancer had been removed, she wanted to try this different approach, to nourish her body back to health. She would give it six months and then check back in with them. At that point, she would do what they suggested if the cancer seemed to be spreading.
They told her, in no uncertain terms, that if she did that, she would die. Period. Their protocol, chemo and radiation, would guarantee her five more years of life, maybe more. They pulled out all the emotional stops. Didn’t she want more time with her children?
Kathleen struggled. Her instincts ran contrary to what the experts were telling her. Her body was telling her she needed something else, but she still had doubts. Her husband sympathized with her dilemma, yet was swayed by the doctors’ certainty. Surely, with their wealth of experience, they knew better?
Ultimately, the pressure was too great. She did the chemo, telling herself that the chemicals flowing into her veins were good for her, even as she became weaker and weaker. Then she did the radiation, too. Her smile was still there, but the wattage dimmed.
She finished every last treatment, got scanned, had her blood markers checked, and was told she was in remission. Allopathic medicine patted itself on the back and shooed her out the door. Six months later, gaunt and haggard, she went in for a check-up. “It’s back,” they said, with their signature sterility.
Kathleen was stunned and confused. “I thought you said those treatments would give me five years.”
Their response: “We only said that to get you to do them. It was for your own good. We didn’t know for sure if they would work or not.” After the fury receded enough for her to speak, Kathleen asked what they recommended now. They told her they had nothing left to offer her, that she should go home and get her affairs in order.
Something shifted inside her that day, permanently. It shifted inside me, too.
I’d always been a nerdy grammar stickler, having been raised by an English major and having taught the verbal portion of the SAT test for decades. I could go on and on about the differences between pairings of words like “uninterested” vs. “disinterested,” or “number” vs. “amount.” It’s a damned miracle my children still talk to me.
But I was never a hard-liner on the correct usage of the words “know” and “believe.” I characterized the difference between them as a matter of certainty: what you know is rock-solid certain; what you believe is less so. But I didn’t get too exercised about other people interchanging them, or even doing so myself, until this point in my friendship with Kathleen.
Freed from her reliance on “the experts,” she packed her bags, kissed her husband and kids, and headed out to Colorado. She had nothing to lose.
Six weeks later, she returned a changed person. She was a conquering hero, a woman who had faced her own mortality and earned the peace and gravitas that comes with surviving that showdown.
Gone was any last shred of uncertainty, replaced with confidence in her gained knowledge and complete trust in her instincts. Gone was the pallor, replaced with a radiant vitality. Gone, also, were ALL of the cancer markers in her blood.
She laughed when she relayed to us the look on her oncologist’s face when she showed up at a baseball game in which both their sons were playing. “He looked like he was seeing a ghost!” Scans confirmed what her blood indicated: she was cancer-free.
Kathleen’s diet was completely different now, based on what she had learned from the clinic. It was rigorous, time-consuming, and a challenge with two small children. But she never complained or “cheated.” She knew, based on lived experience, what her body needed to stay healthy.
She organized a “Celebration of Life!” cruise around Manhattan and invited all of her friends and family who had supported her during her healing journey — a huge group of a hundred or so. We danced and hugged and offered toasts to Kathleen that made us all cry. She spoke, and we all cried again. It was a magnificent evening.
There is more to her story, though what I’ve written so far is probably enough to demonstrate why I follow what I know to be true, rather than what I’m told by “experts.” I’ll return to Kathleen’s journey after I introduce this concept of “knowledge.”
Religious scholar Elaine Pagels wrote The Gnostic Gospels in 1979 to introduce readers to the thirteen papyrus volumes discovered in 1945 near the modern village of Nag Hammadi in Upper Egypt. These scriptures, known as the Gnostic Gospels, expound a radically different view of the life and teachings of Jesus Christ from that of the New Testament.
Nearly all of the works are of Gnostic origin, and represent the most complete record of this sect that flourished during the earliest centuries of the Christian era. How the manuscripts were hidden, discovered, bought, sold, and fought over is a fascinating story in itself, and her book is a gem.
I first encountered the Gnostics while living at Union Theological Seminary with a boyfriend who was a student there. (My essay, Sin: A Unique Definition has it origins there, as well. You can learn a lot living with divinity students.)
What is Gnosticism, for those who are unfamiliar? “Gnō-” is a Proto-Indo-European root meaning "to know," and Gnosticism follows Jesus’s teachings in those buried texts. Gnosticism says that knowledge of God comes from within, not from without. To know God is a personal pursuit, not one that requires intervention by a rabbi or priest, membership in an organized hierarchy, or adherence to prescribed doctrines.
You can imagine how that went over big with the early Christian church. Gnostic believers appeared in the first century A.D., flourished in the second, and were stamped out by the 6th, when the church declared gnostic beliefs to be heretical.
Hey, when you’re trying to control the masses, you can’t have individuals thinking that it’s okay to connect with a higher power all by themselves. That’s dangerous. Better to hide those particular teachings and promulgate those that reinforce obedience.
When I reach back to my earliest memories of hearing the term “Gnostics,” the details are fuzzy, but the impression is not. I distinctly remember some Sunday-school teacher answering a question about them, scoffing as she did so, the way one might while describing people who believed in UFOs before UFOs became an “in” thing to believe in. You know, those loonies out on the edge.
She described Gnosticism as a fringe philosophy, outside the Church’s teachings and therefore something not worthy of attention. We all nodded our little heads and she got back to the business of imparting what was true and right to the souls in her care.
I don’t think I’m going out on a limb to say that pretty much all of us believe that what we believe is the truth. It’s just a universal human experience. Yet can’t we all point to instances of believing things that turned out to be false? When I was young, my mother told me that I wasn’t creative, and I believed her. (When you’re done reading this essay, feel free to read Poindexters Aren’t Creative.)
Just that one belief wreaked havoc in my life. When I finally disabused myself of that “fact,” I began to question all sorts of other “facts.” I had spent a goodly portion of my life in school, learning about the world, its history, my country and its actions, medicine, physics, outer space, art, human evolution, etc.
I asked myself, who wrote this stuff that I dutifully jotted down in my notebooks? Highly respected professors, historians, and scientists. People with PhDs and MDs. But weren’t they all just fallible humans, just like me?
I noticed that I hadn’t really paid attention to how certain beliefs, over time, had quietly slid into a dark unexamined certainty, like clothes into a closet of knowledge. Beliefs such as “the United States is a force for good in the world,” or “the Civil Rights Act ended racism,” or “all drugs are bad and should be illegal” hung there undisturbed, smug in their authority and veracity.
Kathleen’s experience with the medical establishment changed all that.
I became committed to inventorying that closet. Working from the tenet that a belief deserves to become knowledge only when it is successfully put into action, I began a process I still follow: I question any hand-me-down beliefs, get rid of anything that underperforms when pressed into service, and keep the stuff that actually fits me.
I reserve the right to chuck the item later if I outgrow it or it becomes riddled with holes, and I’m ridiculously, scrupulously careful with my use of the phrases “I know” and “I believe.”
It’s possible my loving mother believed what she told me, because someone along the way told her that she wasn’t creative. Or perhaps she took on the belief to protect herself, because she felt un-creative. Regardless of the reason, she perpetuated the lie “for my own good.”
I don’t blame her. I would argue that Kathleen’s doctors did the same. They told her what they thought was best for her out of their experience and good intention, but they ignored the deep power of her own experience and intuition.
It’s the same with almost every human being on this planet. We all forge our beliefs from what we’re told or what we’ve experienced, or some alloy of the two, and then pass down those compounded beliefs as fact. This process perpetuates itself, until and unless we step back and see the transmission of information for what it really is: a generational game of Operator, where informed opinions masquerading as fact pass from one imperfect being to another, over millennia.
Has there ever been a time in history when we were more relentlessly bombarded with information? It’s become harder and harder to tease out truth. I know many who’ve given up trying. “Life’s too short,” they say. “I don’t have time to sift through everything to figure out what to believe.”
Fair enough. But the problem with that is that beliefs can be manipulated, while what you know cannot. I know I gave birth three times. I know caffeine isn’t good for me. I know it’s time for me to leave New York State. All three concepts — even the one about New York — stem from my own personal, lived experience, and I know them to be true.
Nothing others do or say can shake my certainty, because other people cannot insert themselves between me and my own experience; in fact, if they tried to do so, I’d be watchful. I’d ask myself, why are they doing that? What are their possible motives? Are their intentions pure?
Jesus, in the Gnostic Gospel of Thomas, said:
“The Kingdom of God is within you and all around you. Those who come to know themselves will find it.”
I interpret this, like much of the Gnostic Gospels, as a call to his followers to trust their inner wisdom, to immerse themselves in the God that inhabits their own hearts to know the true, spiritual nature of reality.
In that same Gospel of Thomas, Jesus’s disciples kept asking him to spoonfeed them the correct beliefs and practices that would lead to salvation. I can relate. It’s so much easier that way, isn’t it? So tempting to say, “Just tell me what to do and I’ll do it.”
I wonder if he kept telling his followers to "know themselves” because he understood the human inclination to look for answers outside oneself, as well as to aggregate power and control the lives of others for personal gain.
I believe the intersection of those two inclinations is where danger lies. It’s all too easy, and we’ve seen it throughout history all too often, for unscrupulous gurus, mega-corporations, or power-hungry syndicates (I’m looking at you, church and state) to manipulate the beliefs of an entire population by preying on the mass’s desire to be spoonfed.
It’s one thing to convince you that buying a certain mascara will have suitors flocking to your door. It’s quite another to convince you that buying their potentially harmful cancer treatment is the only way to heal yourself.
In the spring of 2006, Kathleen was having some trouble digesting food. Alarmed but not terribly worried, she went to see her primary care physician. He ran bloodwork; no cancer. He ordered scans, which showed a steadily worsening perforation of her colon and damage to neighboring organs: the long-term, irreversible effect of the radiation she had undergone.
Again, they offered her nothing. No longer able to adhere to the diet that she believed had healed her, she felt her body weaken. She planned her daughter’s First Communion, confiding in me that she didn’t really care so much about the religious ceremony; she just wanted to see her daughter in a white dress since she wouldn’t see her get married.
Daily, she lost ground physically, yet her spirit somehow seemed to intensify each day, growing more and more powerful, until by July, it filled the hospice room with her shining presence.
I sat on the bed next to her, and took her frail hand. I squeezed it gently, reminding her of the time we held hands to get past the huge breaking surf together on the South Shore beach.
“I’ll always be there on that beach with you, Kath,” I whispered. She squeezed back.
As I was leaving, her husband motioned to me. “Look,” he said. I turned back, to see Kathleen’s arm raised, fingers forming a peace symbol. A warrior to the end.
The next morning, I awoke to a phone call by a mutual friend. “Our little friend is gone,” she said.
Kathleen’s cause of death was listed as “ovarian cancer.”
Life can be, indeed, too short.
Sometimes, we aren’t willing to accept what our hearts are singing to us — it’s too scary, or following it might lead us outside the safety of the tribe. It requires courage to act from our seat of knowledge, especially when doing so sends us down the path of most resistance.
When I feel scared, I remember that Kathleen walked that path as far as she could… and I feel her squeeze my hand.
Thank you for reading or listening to The Art of Freedom. This post is public so feel free to share it.
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A gorgeous, poignant piece of writing!
Beautiful and powerful. Thank you, Mary.