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Rewired: Fighting back from brain injury

Representative Gabrielle Giffords in a file photo with her husband, Mark Kelly (above), and below on May 17. Representative Gabrielle Giffords in a file photo with her husband, Mark Kelly (above), and below on May 17. (Associated Press/Office of Rep. Gabrielle Giffords/File)
By Katharine Whittemore
October 2, 2011

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How is Gabrielle Giffords doing - truly? Since Jan. 8, when the Arizona congresswoman was shot in the head - the bullet struck the left side of her brain, the side that corrals language, balance, a sense of space and time - she has progressed incredibly. She can walk. She can talk. Her doctors have put her in the top 5 percent for recovery, and to see her standing on the House floor in August, waterfalls of applause all around, was to see a miracle.

But it’s a miracle with catches. Just ask anyone who’s had a traumatic brain injury, or TBI, and their caregivers who dowse for the glass half full. Giffords can talk, but in shorthand: “love you’’ to her husband, astronaut Mark Kelly, “sisters’’ to show how she feels about her beloved nurse, Kristy Poteet, and “so many people, no, no, no’’ when she was told the news, in March, that 19 others were shot that day, and six died. Her balance is fragile; she’s teaching herself to write left-handed (her right side is impaired) and she walks with a cane. But this former power hiker of the Grand Canyon is resolved, as she says, to “walk a mountain.’’

There are some enlightening books about what it’s like to survive a brain injury, mostly by stroke victims, including Kirk Douglas and the poet May Sarton. One of the strongest comes from Robert McCrum, who was the editor in chief of Faber & Faber, the London publisher of Salman Rushdie and Kazuo Ishiguro. In “My Year Off: Recovering Life After a Stroke’’ (Norton, 1998) we follow McCrum, then 42, down the rabbit hole from those first underwater hours to weeks of fatigue, anger, and depression as he seemingly turns “from a young man to an old man.’’ This is a raw book. You can feel McCrum pushing against his English reserve; he cries a lot, which is typical for stroke patients. His speech is slurred, his sense of time shot. But he also has the convalescent’s vivid appreciation of life. And he and his wife of only two months (Sarah Lyall, a London-based New York Times correspondent) grow closer as they “go through the rapids’’ together.

McCrum rallies, and becomes a father, but ends up leaving his old job. That’s typical: Some 80 percent of TBI patients switch or downshift careers. As did Bob Woodruff, the ABC correspondent who was hit in the head by an improvised explosive device in Iraq in 2006, and is the second-billed coauthor to his wife, Lee Woodruff, of “In An Instant: A Family’s Journey of Love and Healing’’ (Random House, 2007).

This is powerful stuff, a hard look at marriage, fear, and jagged hope. “Will my husband still love me?’’ Lee asks Bob’s doctor, weeping, at one point during his 36-day coma. Of all the patients with TBI he has treated, the doctor says, “not one has ever woken up and not loved the people they loved before.’’

Comforting words for those who care for the some 3.2 million Americans living with long-term disabilities from brain injuries. And that number doesn’t take in the 360,000 veterans with TBIs from the wars in Iraq and Afghanistan. This idea, that a patient with a brain injury will not “be themselves,’’ is explored at fascinating length by Jill Bolte Taylor in “My Stroke of Insight: A Brain Scientist’s Personal Journey’’ (Viking, 2008). She describes what it felt like, personally and from an expert’s stance, when her “brain went offline,’’ and it’s a trippy read indeed. Because the left hemisphere, which also houses the ego and a sense of boundaries, is in decline, she experiences a “tranquil euphoria,’’ and feels like she’s “a fluid, not a solid’’ connected to everyone and everything in the universe. It’s so seductive - you can’t experience loss if there’s no you - that for a time she doesn’t care if she recovers her old way of being.

This trippiness also informs Frigyes Karinthy’s “A Journey Round My Skull’’ (first out in 1939, reissued by New York Review of Books in 2008). Oliver Sacks calls it a masterpiece, and it’s one of the earliest examples of what wags call “sick lit’’ (Karinthy, a Hungarian novelist and playwright, had a brain tumor). But if I had to recommend just one book for Congresswoman Giffords to read it would be Taylor’s. Her “Simple Science’’ chapters on how the brain functions are superb. And her eight-year recovery is laced with wild and heartening moments. Such as when Jill’s mother (whom you’ll totally love) gives her a child’s jigsaw puzzle, and suggests she sort the pieces by color. Color? What’s that? And then - flash - color flowers. “It blows my mind (so to speak) that I could not see color until I was told that color was a tool I could use,’’ writes Taylor. Miraculous, how the brain learns to compensate.

One day, I hope, Gabrielle Giffords will write her own stunning story.

Katharine Whittemore is a freelance writer based in Northampton. She can be reached at katharine.whittemore @comcast.net.