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.
To continue reading and see the entire article please visit www.brainline.org
Bart’s story almost matches my own, to the letter, and I also have parents and a spouse that “Saved” me! I thank God close to daily that instead of a hospital they took me home and pushed me to get better
Joel,
God bless you and your family – you are an inspiration to other survivors on similar journeys. Thanks for sharing with us. We all need tor remember to not hide out light under a bushel. Your brother in TBI, Joel
Dear Mr. Goldstein,
Sent you a long message on brainline.org and hope to hear from you soon. I survived a severe TBI although my coma only lasted about 2 weeks I totally appreciate all that you are doing and have done for your son. He is so blessed to have you as a dad. I lost my dad when I was young, but have my memories of him. That is a whole other story in itself. Everyone has told me that I should write a book too. It could happen I suppose….anything is possible, right.? As to what you are doing and have done I send an emphatic “Hooray” to you. Cannot wait to get to know more….Thanks so much!!!
One thing that I am curious about is the differences that a male and female experience as they grow older after surviving a severe TBI….as for me being a female, I am particularly interested in what happens hormonally…I was 27 when I was hit and I just turned 44 on June 7th….
My favorite thing about what you wrote is about laughing….I love to laugh all the time and that is one of my survival techniques. Sometimes you just gotta laugh….I am pretty sure that God has a great sense of humor….Take care Joel…cannot wait to hear from you.
Kerry Mischka
Thanks for the kind words. Trying to get the word out.
Thank you for your kind encouraging words. Best wishes, your brother in TBI, Joel
Glad to hear we’ve been of some use. Good luck with your new efforts!