Fighting the “TBI Wars”: New Alternatives for TBI Survivors
In A Farewell to Arms, Hemingway wrote, “The world breaks us all, then after, some are strong at the broken places.”
Many lives were shattered nearly eleven years ago when our teenage son Bart suffered a severe traumatic brain injury in an automobile crash. Our family’s road back has been long and bitterly hard — with twists, stumbles, wild goose chases, and even a few back-tracks. The book I wrote about our journey after Bart’s injury, No Stone Unturned, offers a rough, hand-drawn map, which though no one wishes to take, millions inevitably will. Over the many weeks, months, and years while Bart worked to regain some of what he lost, my wife Dayle and I puzzled out some useful lessons on navigating the harsh alien landscape. For us, sharing these lessons is a way to heal and get strong again. One of the most valuable survival techniques we learned is a way of evaluating alternative therapies.
Conventional medicine only takes survivors of severe TBI so far, often ending at the nursing home door, or heavily medicated at home, facing long empty hours, and overwhelming family resources. Unconventional therapies are not merely a reasonable option, they are a necessity. Our story is like so many others.
After a month-long coma, Bart gradually emerged with crippling cognitive, emotional, and physical deficits. And after eight months of grueling hospital therapies, the school district and the hospital agreed that he was not ready to return to class and would be better served by placement in an institution. In breathless desperation, we railed against warehousing our seventeen-year-old son in a convalescent home and fought, time and again, to win Bart a chance to struggle, heal, and make progress. We were determined to keep up the bar, to set difficult but attainable goals, and then raise the bar again and again. Who knows for sure how far any of us can go? It takes a little faith. These bureaucrats are not mean-spirited so much as driven by economics and by statistical models of probable outcomes, without taking into account the character of the boy, or of his family. We hunkered down to explore unconventional therapies.
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