The Bible and Western Civilization. “Okay, that’ll do.” It was the summer of the last year of university and I needed one more course to graduate. I had taken, what I like to refer to as, a personal sabbatical halfway through my bachelor’s degree. I came back to school focused, passionate, and ready to work hard, but I let one itty-bitty ball drop. The good folks at student services informed me that my application to graduate had been rejected – I was one credit short. I scrolled through the course calendar and chose the most rudimentary, most no-brainer course I could find to wrap up the degree that would never end. My memory of things learned in university feels like a big house after a hurricane, papers everywhere, nothing where I left it. But, the Bible and Western Civilization? Crystal. Clear. I’m convinced it was divine punishment for treating my education with such carelessness, but none the matter, it was my cross to bear.
One biblical character that stands out for me is Job. God basically ruins Job’s life on a dare from the devil. Kind of makes God a bit of a lame bully, right? But religious studies geeks will tell you that’s not the point of the story. The point of Job’s story has to do with his tenacity. No matter what God, life, whatever, threw at Job, he was still grateful for everything he had. He was tenacious. Even when things weren’t going so well, there was nothing he could do about it so he just accepted it and said, “them’s the breaks; that’s life.”
My mother was a similar force, a unique mixture of wiles, determination, and chutzpah. She was 28 years old when she left the warm bosom of her life in Israel to move across an entire ocean all because she wanted to do something big, bigger than her. My mother got my dad and then three-year-old brother on a one-way flight to toronto. The three (and soon to be four) of them cozied up in a one-bedroom student apartment in downtown toronto as she worked her way through a doctorate in clinical psychology. At 33, everything – the swelling family, the new career, and the semi-detached home – was coming together.
Being alive was something she never took for granted.
To describe her as healthy doesn’t do it justice. She was beyond healthy; she was downright disciplined – the kind of woman who bought into all things detox and macrobiotic. My mother had effectively rid herself of every contaminant. Except for one. Diagnosed with breast cancer at 35, her story begins with the classic “survivor” trope: She finds a lump, treatment follows suit, and against all odds, remission occurs. But before the lottery tickets were bought and the vacations booked, she started to get these excruciating headaches. Then her headaches became migraines, the migraines became dizziness, and the dizziness became trouble walking. In some sort of devilish synchronicity, as if to teach her a bit of Job-like humility, the cancer had metastasized in her brain. The woman who loved being alive, with all her bombastic flare and utter charm, passed away at 37.
In Genes We Trust
Grieving someone’s death is like getting airdropped into the middle of the Mojave with a hand drawn map that only says “take a left at sand dune.” You can either stand in the middle of it all, head in hands, or you can try to figure your way out. People said things to me like, “I don’t know how you manage” or, “if it was me, I’d still be in bed.” But I wasn’t strong, I wasn’t managing, I just didn’t know what else to do except to carry on. In my grief, I became obsessed with cancer, realizing I knew very little about this thing that had taken such an important person away from me. Cancer was not just a disease, but also a character; the development, discovery, and spread of which had a profound effect on my life.
Breast cancer is one of a handful of diseases at the center of the North American consciousness. Screening for it has changed considerably in the past 15 years with the discovery of two breast cancer susceptibility genes in the mid-1990s: BRCA1 and BRCA2. The genetic test for breast cancer, called the BRCA test, is now a clinical reality and routinely performed all over the world. With it, clinicians can assess the risk a person has of developing breast cancer, and the risk of their blood relatives. BRCA testing has become part of today’s oncological zeitgeist, thanks in large part to Angelina Jolie. In 2013, the actress publicly shared her decision to have a double prophylactic mastectomy after learning that she had the BRCA1 mutation. For Jolie, knowing her genetic risk and being able to plan and prepare was the key to winning the persnickety game of cancer hide and seek. Because how could you lose when you’ve already surveyed every closet, cupboard, and cancer-filled crevice in the entire house?
In 2012, a year before Angie was singing the praises of BRCA, I was an 18-year-old looking for a resolution. I wanted to crack the paradoxical case of my mother’s death: healthy woman, mid-30s, breast cancer. It challenged everything I knew about being healthy. I was told that if you get your flu shot, don’t eat red meat, drink wine, eat goji berries, wait, never mind, drink less wine, now replace everything with kale, take your vitamins, but not too many, do this, and do that, you’ll be guaranteed a long, healthy life. My mother did all that, so what went wrong? I was old enough to know that breast cancer wasn’t an affliction of the young and fit; her age made her an outlier. There was something murky underlying her pathology, something deep in her nature. If her genes couldn’t be tested, then I would just have to volunteer myself to be the proxy.
The Composite Patient
Before actually having blood drawn and tested, a woman’s risk must be assessed during pre-test counseling. A genetic counselor will work with the woman to create a pedigree map, making visible the pathological distribution of cancer throughout her family. This helps the counselor decide if there is enough of a risk to even proceed with the test. Identifying all relatives who have been affected by cancer is one of the strongest known individual risk factors for hereditary breast cancer. Here, patienthood takes on a new meaning. The prototypical patient was once a singular person experiencing the disease or the focus of a clinical exam, but the BRCA patient is a composite of many people at-risk of experiencing a disease.
Their patienthood is defined in relation to others, and so the “patient” becomes a synecdochic term for any relative who shares the mutation.
Sitting in the waiting room of North York General Hospital’s Genetics center, I felt staunchly affirmed in my decision to get this test. I wanted to know if I had the mutation, not just for myself, but also for my whole family and any future kin. In the “Whodunnit?” of my mother’s cancer mystery, I was finally getting closer to figuring out the culprit. Although the mutated gene would be a part of my own anatomical body, I felt like I had an altruistic duty to warn the rest of my relatives of their fate.
The Confusing Space Between Disease and Mutation
The results of a BRCA test – whether positive, having the mutation, or negative, having no mutation – are highly ambiguous. To be a carrier does not mean future occurrence of cancer, but instead a greater susceptibility to it. Say you have the inherited mutation, your genetic counselor will inform you that you have a 40-85% risk of getting breast cancer by 70 years of age. It’s quite the margin. The alternative, a negative result, is no less ambiguous. Prognostic testing is still in its early days – it’s not fully known what the connection between a mutation and the development of a cancer is. A negative result implies that there is no known genetic risk, but it could be the case that the mutation either escaped detection or that it exists in another gene that has yet to be discovered. There was something inherently problematic with the evidence I was working with. Both outcomes don’t exactly offer peace of mind, but the perception of this biological omen is that it is a veracious advancement towards a life that is breast cancer free.
Prognostic testing is intended to help our genes be heard, to yield their secret inner workings, functions, and – with any luck – their dysfunctions. However, this unstable prognosis has transformed breast cancer from a yes or no condition into a continuum of risk. The ambiguity between diagnosis and prognosis, between mutation and disease, is what defines the at-risk patient. I won’t say that this liminality is all bad. We’ve seen improved and mandated prevention and screening practices, and widespread legitimization of the pre-symptomatic breast cancer patient. However, an unintended trickle-down effect is the additional burden of responsibility that comes with knowing your risk.
By all intents and purposes, the at-risk patient is still “healthy.” Yet, in a particularly ingenious biomedicalizing fiat, the at-risk patient is no longer just responsible for the health of their body, but the health of their unwavering genome too. If it turned out that I was a carrier of the mutation, I would be thrust into a long-term regulatory relationship with my “breast health.” I would have to become so perceptibly aware of a part of my body that, at any point, could fail me. Since there are no cures (yet) for a genetic mutation, the only way to avoid engaging in these stringent screening practices, to take back control, and to eliminate any and all risk, would be to get a prophylactic mastectomy.
Your Breasts Are No Good Here
Prophylactic mastectomies have become a go-to medical intervention for women who are at-risk. My brother, who was in medical school at the time, told me in all seriousness that if i had the mutation, I could just lop my breasts off and put new ones on; a single procedure – no fuss, no muss. He made it seem like the decision to surgically remove my breasts from my body was like deciding whether or not to get bangs, “Oh yeah, bangs. Definitely.” At 18, I wasn’t prepared to acknowledge this as a possible option.
The more I learned about the test, the more unprepared I felt about solving the mystery before me. Everything had a caveat attached to it. It felt like I was free-falling through an infinite waterfall of possible risk. Testing positive would mean having to choose between hyper-surveillance and surgery, neither of which was helpful or even realistic for me. It’s absurd, really, that this whole ordeal would be based on 1) a vague quantification of risk for 2) a disease that could literally manifest at any point in my life. The presence of BRCA1 and BRCA2 may mean a higher risk of developing the disease, but hereditary breast cancers are very rare compared to the risk from environmental and lifestyle factors.
In fact, current research suggests that only 5-10% of breast cancer cases are the result of an inherited predisposition.
Into the Unknown
Being alive means accepting that everything in life arises and passes. This is an understanding that wanes some days and is crystal clear on others. There are times when I feel so incredibly aware of each moment – its brevity, its pain, its beauty, and its end. Throwing flowers at God’s feet, Job accepts his punishment and accedes to God’s divine wisdom. Throughout his trial, Job remains completely humble and grateful for what God has given him, for he does not have any knowledge “of things beyond [himself] which [he] did not know.” Well neither do I, but I can accept that each moment will inform the next in order to keep myself sane.
Marcel Proust, writing to a bereaved friend, said, “you will always keep something broken about you.” Although it would be nearly a century before the discovery of the BRCA mutation, he was not wrong. Even though my mother’s genes, broken or not, are woven into mine, I’ve learned to let go – to deal with the sadness, the uncertainty, and to forge ahead.