Magazine article The Exceptional Parent

No Stone Unturned: Living with a TBI Survivor Is like Living with a Jack-in-the-Box. but If There Is One Universal Truth about TBI, It Is That Survivors Need Strong Advocates in Order to Navigate Mind Boggling Challenges

Magazine article The Exceptional Parent

No Stone Unturned: Living with a TBI Survivor Is like Living with a Jack-in-the-Box. but If There Is One Universal Truth about TBI, It Is That Survivors Need Strong Advocates in Order to Navigate Mind Boggling Challenges

Article excerpt

Imagine this Sci-Fi movie scenario: a silent epidemic haunts the land - a monstrous scourge ruthlessly killing off 50,000 people, year after year. Teenagers out for a joy ride, elderly at home in showers or on stairs, weekend warriors on sturdy mountain bikes, and toddlers on the playgrounds. No one is safe. Every 20 seconds, one witnesses a brutal attack, and though many survive, they are often disabled, disfigured outwardly or in baffling invisible ways.

Survivors' families fight desperately to save them but, faced with a colossal force, are tossed wildly about, then left to sink or swim. Each person experiences a sudden, violent, horror - followed by a total break with the past. They struggle to find sea legs, to cling to loved ones and the closeness of family life. Despite heroic efforts, their stricken relative is gone. In his place they find a stranger, somehow reminiscent of their lost loved one. Families are left adrift in enemy held waters. Most seem to quietly slip away from the common weal. Years pass and the numbers of dead, disabled and missing reaches into the millions.

[ILLUSTRATION OMITTED]

This scenario is a dramatic rendering of the impact of traumatic brain injury. Each decade, half a million Americans die and another two million are disabled by TBI. Astounding numbers! Just as astounding is the fact that there is almost no sense of alarm, no public hew and cry at this staggering "invisible epidemic." Brain injury is by far the leading cause of death and disability among young persons.

Christmas 2001 my wife and I were snatched from ordinary lives and plunged into a parent's worst nightmare - a car accident resulting in our teenage child's traumatic brain injury. At Westchester Medical Center we found Bart already in emergency neurosurgery - no parental permission, do-or-die. Later in PACU, his misshapen head and face were swathed in bandages, leaving only small slits for eyes. With hoses snaking out of mouth and nose, and unbelievably, even a couple coming right out the top of his skull, we were reduced to examining his hands and feet to convince ourselves that that this grotesque lifeless creature was our precious son.

Bart remained in coma for a month. Desperate times in NICU, where patients routinely die, and the 'brotherhood of man' is no pious platitude, but a day-in, day-out, living reality. The same sort of fellowship has been noted among combat troops. I dubbed the phenomenon, "The Fellowship of the Damned" and then eventually, just "The Fellowship."

Eight months of grueling hospital therapies and the verdict is in: the school district agrees with the hospital's assessment--Bart is not ready to return to class, and would be better served by placement in an institution. In breathless desperation, we rail against warehousing our seventeen year old son in a nursing home, and fight, time and again, to win Bart a chance to struggle, heal and progress.

We were determined to keep the bar up, to set difficult but attainable goals; and then raise the bar again and again. Who knows for sure how far anybody can go? It takes a little faith. These bureaucrats are not mean spirited so much as driven by statistical models of probable outcomes, without taking into account the character of the boy, or of his family. We began exploring alternatives therapies.

For survivors of severe TBI, unconventional therapies are not merely a reasonable option, they are a necessity. Conventional medicine only takes us so far, often ending at the nursing home door or, heavily medicated at home, facing long empty hours. Dayle and I cobbled together an unofficial 'medical board' of trusted experts. 'Members' didn't know each other or that they served on our 'board.' When we found a promising therapy, we'd ask each of them whether they thought it might do any harm. Some of the most promising and exciting approaches failed this crucial test. Our bags were packed a couple of times, only to be shot down by a board member seeing potential harm in an emerging therapy. …

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