How would you cope if you suddenly lost sight in one eye, and faced the possibility you could also lose sight in the other?
In his memoir The Beauty of Dusk: On Vision Lost and Found, New York Times journalist and bestselling author Frank Bruni chronicles his experience of waking up one morning in 2017 with blurry, distorted vision. He was eventually diagnosed with a rare disorder that left him functionally blind in one eye, and doctors warned him he could suffer damage to the other eye, leaving him totally blind.
Countless memoirs and personal essays explore illness and disability. Some, like Porochista Khakpour’s Sick, illuminate the ravages of chronic illness in the face of the broken U.S. healthcare system. Others, like Suleika Jaouad’s Between Two Kingdoms, strike a more inspirational tone, by viewing illness as a pathway to enriched personal fulfillment or artistic expression.
Dusk differs from these and other medical memoirs in that it underscores the importance of patient advocacy and considers healthcare providers as flawed humans rather than heroes. In an early chapter, Bruni shares his experience with the neuro-ophthalmolgist who accurately diagnosed his rare condition. “She nailed what was wrong with my vision,” he wrote. “She also knew about the one clinical trial underway for my condition. She steered me into it with the necessary dispatch.”
However, this same doctor led Bruni down a wrong path when it came to managing his condition. “We want clear roles: The doctor comments; the patient obeys,” wrote Bruni. “But, at times, in their imperfection and arrogance and haste, they make assumptions and mistakes. So it’s crucial to approach a relationship with a doctor, any doctor, as a partnership and to consider yourself an equal partner, respectful but not obsequious, receptive but skeptical.”
After describing the first days and weeks of losing sight in one eye—caused by a stroke to an optic nerve—Bruni devotes the rest of the memoir to exploring the personal, professional, and physical ramifications of experiencing partial blindness and facing the possibility of losing his sight altogether. For the author, the question would you rather go deaf or go blind? was no longer theoretical. “I was now playing this game myself, inside my head,” he wrote, “although it wasn’t a game anymore. It was a measurement of my misfortune. An assessment of my lot. A wondering about where I fell along the spectrum of deprivation.”
As Bruni grappled with the possibility of total blindness, he leaned on his capacity as a journalist, interviewing numerous people who have either lost their sight or live with another type of disability, anxious for advice or inspiration. He interviewed a college friend diagnosed with Parkinson’s at age 36. A veteran who lost a limb. An architect who still designs buildings after going blind at age 45. A woman who started to teach dance after losing her sight. How were they able to cope, even flourish, with illness or disability?
“As long as we’re alive, we have to keep moving,” one told him. Others described physical disability as a fork, from which you could travel toward engagement or disengagement, positivity or negativity. Overall, the examples used avoid being overly simplified or idealistic. Interviewees are honest about the despair and dread that can accompany diminished capacity, particularly in the beginning stages.
One particular portrayal stood out, in the chapter, “Starfish and Twiggy,” where Bruni shares the story of David Tatel, a now-retired judge with the U.S. Court of Appeals for the District of Columbia Circuit who became blind in his early thirties. “Starfish can regrow limbs,” Tatel told Bruni in a 2017 interview. “But that’s nothing compared to what human beings can do.”
Tatel’s metaphor of a starfish—a marine animal famous for its ability to regrow severed limbs—serves as a catalyst for the book’s exploration on neuroplasticity, or the science of the brain and its ability to adapt and compensate for functional loss such as blindness.
At some point, Bruni notices that he himself has begun to subconsciously adapt to the his partial vision loss, and is exhilarated upon this discovery. “The exhilaration wasn’t about my vision but about my potential,” he wrote. “Even in the later innings of our lives, we have unplumbed abilities, untaxed muscles, flexibility, growth. That made the prospect of further deterioration of my vision less scary. That made everything less scary.”
The “everything” Bruni alludes to in the above excerpt includes the issue of aging. The author addresses this topic in chapter 13, “Showboats and Tugboats,” in which he realizes that not only was he in a “chapter of my life when I began to contemplate and experience aging as I never had before” but that he was finding “so much vivid proof of its upsides.”
Bruni unearths evidence of public figures who peaked in their sixties, seventies, and beyond to illustrate this point. Ruth Bader Ginsberg is mentioned, as are Anthony Fauci and Nancy Pelosi. Most intriguing, however, is his example of Joe Biden. Bruni voiced his own concerns of Biden’s 2020 presidential bid with not one, but two, columns in the Times, saying Biden was simply too old to run. Bruni voiced other concerns about Biden aside from his age, but they all boiled down to one thing: he felt Biden was past his prime. Except, as Bruni discovered while writing Dusk, “he wasn’t, at least depending on how you defined prime.”
Presidential candidate Biden, Bruni wrote, defied the naysayers, including him. He also witnessed a different Biden once he clinched the Presidency, one who exhibited stamina and optimism instead of the “windbag, famous for sucking the oxygen out of a room” from his earlier years in political office. He witnessed how Biden listened to his own inner voice, rather than his critics, and how his presidential speeches were shorter on length but greater in conviction. It’s a refreshing take on the ongoing controversy over Biden’s age, and should dispel some of the myths surrounding age and ability, or at least change the conversation about whether Biden is capable of handling a second term and what it means to be in one’s prime.
In the last chapter, Bruni admits that The Beauty of Dusk was harder to write than any of the half dozen books he’s produced before due to his condition. His eyes, he wrote, sometimes “swim over and under and around all the words and all the text.” Despite this, he continued, “I start over. I fix what needs fixing.”
Bruni seems to have found more patience with himself and his own limitations in the years since his stroke. Though the book doesn’t offer nice, neat answers about what it means to lose one’s sight, it does offer a deeper, more nuanced understanding of our ability to adapt as humans. Bruni sums this up near the end of his 300-page memoir, writing that, “We have no control over what happens to us; we have enormous control over what happens to us. I’ll spend the rest of my life better understanding and better accepting that paradox, which I understand and accept better today than I did before October 2017, before that first day of incomprehensible blur, before an education in neuro-ophthalmology that became an education in so much more.”
The Beauty of Dusk: On Vision Lost and Found, by Frank Bruni. c 2022 Simon & Schuster.