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.
Faced with the vast sprawling chaos of “alternative therapies,” and painfully aware that a false step might risk further injury to Bart, we were staggered. How could we determine which approaches were safe and held real promise? Separating the wheat from the chaff seemed near impossible. Should we accept the doctors’ verdict and wait, hope, and pray for the best?
Dayle and I cobbled together an unofficial “medical board” of trusted physicians, including the neurosurgeon who had saved Bart, performing emergency surgery without parental permission, do-or-die. “Members” didn’t know each other or that they served on a “board.” When we found a promising alternative therapy, we’d ask each member whether he thought it might do any harm. The therapies that got a clean bill of health moved to the next stage for further investigation. Some of the most promising and exciting approaches failed this simple Hippocratic test. Those that didn’t make the cut most often relied on medications with potentially serious side effects. Our bags were packed a couple of times, only to be shot down by a board member seeing potential harm in an emerging therapy.
Doctors generally offered an editorial opinion, too — suggesting that a therapy, though safe, was a waste of time and money. One trusty “devil’s advocate” was sure that all alternative therapies were bogus, admonishing that, “Not all who rave are divinely inspired.” But here we had the advantage — at least we knew we were ignorant. It seems a truism, but even the best-trained, most skilled, and well-intentioned professionals in the world often suffer a kind of tunnel vision, sticking to familiar, well-trod paths that pioneers once blazed. Before they eventually won universal acceptance, the practices of conducting heart-surgery or of treating peptic ulcers as infections were doggedly opposed and bitterly denounced by the medical establishment. We don’t wish to demonize doctors. After all, our book is dedicated to two of them.
Putting Bart through the rigors of even safe emerging therapies was serious business. How many failures could Bart stomach — or any of us, for that matter? Treatment inevitably involves time, money, effort, and emotional investment. Better be very careful in vetting potential approaches, for defeat has a corrosive effect. There was also the matter of “therapy fatigue.” Poor Bart had already soldiered through thousands of conventional therapy sessions — OT, PT, vision, speech, and cognitive therapy.
Eventually, we tried several alternative therapies, defined as practices falling outside the standard of medical practice and not covered by health insurance. Some were useless. Others, like Hyperbaric Oxygen Therapy (HBOT), Craniosachral, Boyles Sensory Learning, Novavison’s Vision Restoration (VRT), and supplementation a la Dr. Perlmutter, were remarkably successful for us, gradually transforming Bart’s life and prospects. Once safety had been determined, the vetting process involved speaking with parents, practitioners, and other responsible parties including manufacturers. No money-back guarantees. TBI is a life-long condition, and we rely on this method to this day.
Some successes were breathtaking. Bart had been allowed to return to school provisionally, but for half-days, in special ed classes, and accompanied by a dedicated aide to assist in class and assure safety. Every half hour or so he’d fall asleep, nodding off mid-sentence. We jokingly referred to these as power naps. Humor is a vital part of the healing process, and we’ve clung to it like a life-preserver. But sleeping the day away was no laughing matter. If he failed to keep up in class, Bart would be removed from the high school. An extreme extrovert, he desperately needed to be around familiar faces, among people who loved him to have even a fighting chance at recovery. Imagine our excitement and relief when after only four sessions of HBOT, he was able to make it through the entire day without a nap! Our lives took on a schizoid quality — one moment in panic, sadness, or anger, the very next in hysterical laughter, or dancing a jig over some small improvement in Bart’s condition. A working title for our book was Either Sadness or Euphoria, which pretty much sums up the tempo of life with TBI.