The title of Paul Kalanithi’s memoir, When Breath Becomes Air,1 seized my attention. Breath is highly personal, while air is impersonal, shared with plants, animals, and our neighbors. Dr. Kalanithi, a 36-year-old Stanford neurosurgeon, described his first experience as a patient. The CT scans he was looking at—showing masses in the brain and spine—were his own: He had stage IV lung cancer. Dr. Kalanithi lived 2 more years, finishing his neurosurgery residency, welcoming his infant daughter, and writing a poignant memoir, now a New York Times #1 bestseller.
Dr. Kalanithi wrote about how different it is to experience firsthand the things we discuss with our patients every day. For example, even though he realized, intellectually, that Kaplan-Meier curves cannot predict an individual’s outcome, he badgered his oncologist to forecast his life span—and she refused. He jumped from the role of a physician who understands the limits of statistics to that of a patient who is desperate for definitive answers.
While reading his book, I wondered what it might be like for an ophthalmologist to become an eye patient. So I asked a colleague and good friend, who is a busy and skilled anterior segment surgeon, about his experiences. John (not his real name) has had a retinal detachment repair, a vitrectomy, and bilateral cataract surgery. He also has glaucoma.
John is not afraid to talk about his ophthalmic tribulations, and he feels that he is a more empathetic doctor because of his own disease. He said, “I sometimes share my story with patients, especially those who have serious fear and can benefit from my reassuring words.”
When asked about fear of blindness, John shares that he’s thought a lot about vision loss. “I know all that can happen and envision the worst-case scenarios. Still, I’m resigned to accept what I cannot control.” Many of my patients say that they would rather have cancer or heart disease—or even die—than lose their vision. But John said, “I’d rather be blind and live a little longer, enjoying music and experiencing my family.” Perhaps being an ophthalmologist provides him more perspective, and information is an antidote to fear.
In a much-quoted editorial in American Journal of Ophthalmology, retina specialist Travis Meredith eloquently described his own experience and visual symptoms after vitreous detachment and subsequent retinal tear.2 His visual acuity returned to 20/15, but a C-shaped floater remained, along with a diminished sense of brightness as well as light scatter at night.
He communicated the distress that can be caused by floaters and by doctors’ dismissal of patient complaints. He wrote, “Psychologically, the constant presence of the opacities in my vision was disturbing. Something abnormal was always in my view, causing me to become more tense and irritable as the day progressed. When patients say that their floaters are driving them crazy, it is not such an exaggeration as I had imagined.”
Dr. Meredith changed after becoming an eye patient: “I now listen to patients with a greater appreciation for both the variety and the emotional impact of their symptoms, and the reassurance I give is to empathize with them because their experiences may be remarkable.”
We all do our best to listen to patients and glean from them what it’s like to live with eye disease. I regard myself as very thoughtful about the challenges of having glaucoma and try to empathize with my patients. However, hearing from a spine surgeon with spinal metastases, from a cataract surgeon with cataracts, and from a retina specialist with a vitreoretinal condition creates a whole new connection. Not only are these voices highly credible but they are also highly personal, because the patient is one of us.
In a few months I’ll write about eye surgeons who operate on ophthalmologists. You can email me with HIPAA-compliant thoughts at RuthWilliams@wheatoneye.com, and I might share them with our ophthalmic community.
1 Kalanithi P. When Breath Becomes Air. New York: Random House; 2016.
2 Meredith T. Am J Ophthalmol. 1996;121(6):687-689.