• Sun. Oct 25th, 2026

The Weight of Our Pages: Genetics, Privilege, and the Hidden Battles of Huntington’s Disease

For generations, humanity has leaned on the metaphor of the blank slate. We entered this world, so the philosophy went, as an unwritten page, waiting for the ink of our parents, family, relatives, friends, society, culture, and religion to draft our life stories. Yet, modern science has profoundly rewritten that assumption. Genetics has shown us that the page is never truly blank. Long before anyone picks up a pen to write our experiences, a complex blueprint of predispositions, biological dispositions, and genetic vulnerabilities is already printed on the parchment.

Contemporary psychology offers a complementary perspective, suggesting that no matter what text was pre-printed on that page, no matter which deterministic forces have inscribed their lines, and no matter what they left unsaid between the lines, human agency still allows us the capacity to turn the page. But as clinicians, researchers, and observers of the human condition frequently note, some pages are vastly heavier to turn than others. The sheer effort required to navigate life’s fundamental challenges varies drastically from person to person, shaped by an intricate lottery of biology and circumstance that remains largely invisible to the outside world.

Her Page and His

The stark reality of this disparity came into sharp focus during an encounter with a patient who embodied the most devastating intersection of genetics and fate. When they first met, she was 36 years old, single, and grappling with the very late stages of Huntington’s disease—a severe, progressive neurodegenerative disorder that currently offers no protection and no cure.

Her life stood in staggering contrast to that of her younger brother. He was a man defined by over-privilege, having been handed virtually every resource that a wealthy family could possibly provide. He inhabited a lavish world, openly proud of the romantic relationships he had broken, the frequency with which he had cheated, and the clever mechanisms engineered by his financial advisors to ensure he never paid a single penny in taxes. He took equal pride in how often his expensive legal teams had successfully insulated him from the kinds of legal trouble that would have landed an ordinary person in prison for a significant period. During one conversation, he laughed and remarked, "The garbage man who picks up my garbage pays me to make the garbage he picks up."

Crucially, he did not inherit the disease.

Huntington’s disease is an autosomal dominant condition, meaning that each child of an affected parent carries a strict 50 percent statistical chance of inheriting the mutated gene that causes it. She and her brother were born to the exact same parents, sharing a household and an origin, yet only one of them was handed this catastrophic genetic page.

Her personal story rushed toward a tragically fast conclusion. Just a few months after their initial encounter, she passed away. During the brief time they spent together, she reflected candidly on her interpersonal history, noting how almost every man who had entered her life had exploited her vulnerability before eventually abandoning her. In her own poignant words, she observed, "I have a gift for picking men who are copies of my brother."

For those conditioned to look for cinematic triumphs in tales of adversity, her reality offered no comforting tropes. If readers expect a narrative where a terminally ill individual overcomes all odds to win prestigious prizes or achieve global renown, the outcome is sobering. She did nothing of the sort. All she attempted to do with her limited time was to secure an ordinary life—to wake up, exist, and navigate the world with a modicum of peace. Yet, given the heavy conditions pre-printed on her biological page, achieving even that baseline of normalcy represented a legacy that few human beings could ever hope to match.

Page Weight

Psychological research increasingly suggests that human beings are acutely attuned to the obstacles they must actively push against, while remaining largely oblivious to the invisible advantages that carry them effortlessly forward. This cognitive bias may explain why her brother could laugh through life so easily; he had simply never encountered an immovable barrier that required him to push.

To describe this phenomenon, observers of human resilience point to the concept of "page weight"—the sheer psychological and physical effort it takes simply to turn what was printed on our page before anyone ever picked up a pen. From an external perspective, this weight is entirely invisible. If an ordinary life costs you significantly more emotional, mental, and physical energy than other people’s lives seem to cost them, you are likely carrying a heavy page weight.

On one occasion, during a private moment when she was unaware anyone was listening, she was overheard speaking to another terminally ill patient at the facility. Summing up her philosophy of existence, she offered a profound insight: "Our biggest accomplishment is not to become bitter, and every day we have the privilege to wake up, to say hi."

Her brother was handed a pristine page that he never had to strain to turn, navigating a world cushioned by wealth and spared from genetic catastrophe. She, conversely, was handed a page that no rational human being would ever consciously choose. She spent her short life quietly, valiantly trying to turn it. She never asked for fame, fortune, or extraordinary achievements; she only desired what the vast majority of people receive every single day without ever pausing to notice: an ordinary life.

If you are caring for, or grieving, someone with Huntington’s disease, the Huntington Society of Canada and the Huntington’s Disease Society of America offer dedicated support systems and resources for families navigating these profound challenges.