When I first learned that Rep. Gabrielle Giffords had been shot in the left temple, I felt a fierce pang for her, because I knew only too well what damage to that part of the brain can usher in-- a suite of disabilities, affecting everything from language to locomotion. Daily life pinwheels for a while until a new normal emerges.
Six years ago, when my 74-year-old husband had a left hemisphere stroke, he lost his ability to speak, read or understand words. Aphasia it's called, a frustrating tip-of-the-tongue memory loss. This seemed the cruelest of blows for a man whose whole life had revolved around books. He'd written nearly 50 himself, lovingly read hordes of books, and taught countless others to students.
Just as some couples relate through their children, as lifelong word-mavens we had related through our frisky family of words-- by playing word games, discussing books, making up zany songs, critiquing each other's work, bantering, bestowing outlandish pet names, and obsessively searching for the perfect, or at least picturesque, words for whatever fate doled out.
Then suddenly a lightning strike in his brain. Afterward, all he could utter was one syllable: "Mem." He understood nothing anyone said to him, and couldn't read, tell time or fathom numbers. And he had somehow forgotten the "how" of doing things: how to sit down, use the toilet, brush his hair, climb into bed, steer a spoon. He couldn't swallow without choking, couldn't walk without falling. His short-term memory seemed to evaporate. Confused and frightened, he felt brutally alone. So did I. His prognosis was grim.
Both Paul and Rep. Giffords had unwillingly joined a large, ill-fated club: people of all ages with traumatic brain injuries. For about 300,000 people a year, the injury is due to a traffic accident or a gunshot wound. Add to that number all the young soldiers--the Pentagon says 200,000 since 2000, but outside sources say the true figure is closer to 400,000 --who have suffered brain injuries in war, many returning home with aphasia.
Stroke (what used to be called "apoplexy") is probably the best known of such injuries, something that touches nearly every family, since it's the number one long-term disability in the U.S. Like Paul, many stroke survivors end up with aphasia-- and face not only the challenge of re-learning language but also redefining their relationship with loved ones, which may include new obstacles and fewer words. In the U.S. alone, at any one time, approximately 1 million people are living with aphasia. Including Gabrielle Giffords.
When Paul suffered his stroke, I thought it was the end of our 35-year-long romance. But the brain is a resilient captive, a bustling 3-pound universe that can sometimes rewire itself, dig new pathways, train new recruits. As severe as Paul's aphasia was, and still is at times, over the past six years, thanks to perseverance, loads of love, steadfast hope, offbeat therapy, and the brain's remarkable gift for plasticity, Paul has learned to speak, read, and write again.
This certainly wasn't easy. It took a lot of work and determination on his part, ingenuity on mine, and a refusal to give up before trying absolutely everything and discovering what treasures may still remain. Oddly enough, the struggle drew us closer, and brought Paul a new caliber of happiness, one based much less on striving and more on the sheer joy of being alive, and feeling loved, on a crazy blue planet in space. Aphasia still plays its merry pranks, still makes demands on both of us, but we've made a sweet life for ourselves, despite everything. I decided to write about our experience in One Hundred Names for Love: A Stroke, A Marriage, and the Language of Healing.
I've heard many people in the media speaking of when Ms. Giffords "completely recovers" from her injuries. Not knowing the precise details of Ms. Giffords's injuries, which her doctors haven't revealed, I suspect she has a good chance of healing, since she's only half of Paul's age. But as I learned, and explained to Paul about six weeks after his stroke, as he began saying a few words and longed to know when he would recover: "Total recovery isn't possible with this kind of an injury, but improvement is. You can improve a lot. Let's keep working hard and help you improve as much as you possibly can."
That's usually a slow process, which may take years, have highs and lows, and test the mettle of both patient and family. But it can also include joy, wonder, play, laughter, and all sorts of life-altering gains. So much is possible when hope and love abides.