In the case of public figures who are seriously injured, an all-too common pattern repeats itself in the media: cryptic, scant details are offered by medical professionals, and the world is left to dissect their meaning. When the ABC anchorman Bob Woodruff, for example, sustained a brain injury in Iraq in January of 2006, there was a tremendous amount of media coverage about the incident, but almost no details emerged about the extent of his injury. Reports said that Woodruff “responded to stimuli in his hands and feet.” It wasn’t until two months later, when Woodruff’s brother spoke to the media, that we learned Woodruff was walking and speaking. Finally, some 11 months later, when he and wife Lee released the book In an Instant, the public had a chance to learn the details of Woodruff’s recovery. With a lucrative television career at stake, Bob Woodruff had every reason to keep his condition confidential.
Now that Congresswoman Gabrielle Giffords has survived a gunshot wound to the head, there’s a powerful opportunity for her family to take a different approach with the American public. Giffords is a champion of healthcare policy, having sponsored a number of health-related bills for both military members and civilians. Her history and success as a policymaker is indisputable. Now is the time for Giffords and her family to practice courageous transparency with the same diligence that honors Giffords’ life and work.
All of us realize that Gifford’s career is at stake, and that any of her gains and losses will be scrupulously analyzed against a political backdrop—but the public is largely blind to the truly catastrophic and debilitating nature of brain injury. By giving Giffords’ medical team permission and encouragement to talk openly of her injury and the details of her care, Giffords and her family can reform healthcare in a personal and profound way.
Rather than offer sentimental, soft-focused features that tend to focus only on the best hopes for Giffords, the media should take a candid, socially responsible approach to the issue. Television anchors shouldn’t talk to family members about their hopes and prayers; they should interview social workers about the enormous energy it takes to care for a person with a brain injury. A speech therapist might talk about the hour spent coaxing a person to swallow a sip of water. A severe brain injury might require the combined efforts of dozens of clinicians, and result in hundreds of thousands of dollars in hospital bills. Case managers will admit how hard it is to find a rehabilitation center for most patients—there are only about 5,000 beds in the country that specialize in brain injury.
If Giffords’ family were to allow cameras by her bedside, viewers might be distressed by the reality of brain injury—but as Julian Schnabel proved with The Diving Bell and the Butterfly, physical suffering can be conveyed with dignity. It’s hard to believe anyone can survive a situation in which large portions of their skull is missing. If the eyes are open, they may appear crossed or glassy and unresponsive. Communication, if there is any, exists on the level of hand squeezes, grunts, or blinks. Therapy consists of massaging and extending limbs, or whispering commands. Everything becomes a matter of screening and gauging a person’s level of functioning. Recovery seems to progress at a glacial pace as the patient inches up the Glasgow Coma Scale. Families cheer when first words are uttered; they despair if those words don’t make sense. Hallucinations and profound confusion may occur, and then give way to increasing clarity.
A penetrating head injury isn’t pretty, but its psychosocial impact can be even more gruesome. Let the American public see the uncertainty, and terror that Giffords’ family must wrestle with. Let them ask big questions about her current abilities and her career. Every year, about 1.7 million Americans sustain a brain injury—nearly five times the number sustained by servicemembers in Iraq and Afghanistan. Brain injury survivors endure tremendous barriers to adequate healthcare, and they struggle far too often in silence. Giffords’ family has an opportunity to tell these Americans that they are not alone.
Left untreated, brain injury is destructive and debilitating, but it doesn’t have to be. With his own stellar recovery, Bob Woodruff demonstrated that brain injuries are treatable, and they need not be attached to a stigma. Congresswoman Giffords’ own convalescence can signal a turning point where Americans finally have a chance to see the true face of brain injury.
Through public statements and a few touching photos, Giffords’ family has already demonstrated tremendous strength and resilience; now let them transform this terrible event into a public good in the service of all Americans with brain injury. This tragic event is an uncommon opportunity in which the light of responsible media attention can be therapeutic for an entire nation.
Update 3/6/09: I’d like to applaud the Giffords family for their radical transparency. They’ve offered an unprecedented level of openness about the medical care of a person with brain injury. Their courage is a gift to all America, and is helping to further the education and understanding of people and families afflicted by brain injury.