With the five-year anniversary of my traumatic brain injury on the horizon, I have gained one thing that I was not capable of having early on—I have gained a perspective that comes with time.
Like so many others who share my fate, I get a bit reflective every year around TBI anniversary time. It’s a bit of a “take stock” time for me as I look at where I am today – compared to where I was. I now allow myself to look to the future with hope, a realistic hope that I will continue to heal.
But there was a day that someone stole my hope and left me completely and utterly devastated.
I’m a big fan of taking personal inventory. A year after I was struck down by a teenaged driver while I was cycling, I decided it was time. I had heard a lot about neuropsychological testing. It was time to see how many of my marbles remained. I wanted a clearer understanding of my deficits so that I could have a starting point, a place to begin the next chapter of my healing.
After hours of grueling testing that took place over the course of several days, I sat down with my wife, Sarah, and the neuropsychologist. As we reviewed the results of my test, it was clear that my assessment was not quite what we expected.
“David, you are in the bottom five percentile in the areas of complex problem solving and verbal recall,” he said as dryly as if giving driving directions to a stranger. This fact alone was shocking enough. But there were more sucker punches to my soul awaiting.
“You are permanently disabled, and any gains you have from here on out will be small at best,” he shared, as my wife and I sat there trying to comprehend the gravity of his diagnosis.
Still keeping a stiff upper lip, I asked about scheduling a neuropsychological test a year out, suggesting that we could use this first test as a benchmark to measure future gains.
“There is no need, your gains will be insignificant at best,” came the authoritative answer.
As our visit wound down, there was a final hope-stealing shot across my bow.
“Most brain injury survivors see an IQ drop after their injuries. It’s clear that you were a very intelligent man before your accident. Even losing some of your IQ, you should be able to get by relatively okay now,” he propounded, as we were getting ready to leave his office.
Many years have passed since that meeting. Swimming in a sea with other survivors over the years, I have heard this same misinformation shared over and over again – after a year, you are as good as you are going to get. Please check your HOPE at the door. No need for optimism. Go directly to TBI jail, do not pass Go, do not collect $200. Hunker down and just grin and bear it. You are lucky enough just to be alive.
As time continues to pass, I now recognize this kind of advice for what it is: old-school science. The old-school TBI science was simple and easy. After a year, any gains would be small. Thankfully, a new school of science is now dominating the national brain injury narrative. New school science embraces neuroplasticity and challenges the archaic belief that recovery has an end game. New school science embraces the hidden power of the brain and human body. New school science says that as long as you have a heartbeat, you will continue to heal. And best of all, new school science is a science of hope - hope that the way things are today are not how they will be next year, or in five years.
One of the first to push old school science to the side was Dr. Jill Bolte-Taylor. In her book, My Stroke of Insight, she speaks of measurable gains through the eight-year mark. Last year at this time, I attended a conference in Maine. The keynote presenter, who is also a doctor and the parent of a survivor, took to the podium in front of her peers and continued this new narrative.
“As a medical community, we got it wrong when we told you that recovery was over in a year. We got it wrong,” she shared. You could have heard a pin drop.
I hold no ill will, anger or resentment to the well-intentioned doctor who temporarily stole my hope. He was only preaching what his old-school science had taught him. As the tide continues to turn, more and more members of the medical and professional community are letting go of the one-year myth. The Dark Ages of brain injury recovery are slowly fading into the past.
I need only look at my own life to see some of the long-term gains.
At two years out, my vertigo almost ceased. At three years out, I was again able to work beyond 2:00 PM every day. At four years out, I was able to read books again – something I thought I had lost forever. The list goes on.
Today I have real hope – hope that I will continue my path toward recovery. Not “whistling in the dark” hope, this is true hope based on my life experience as well as emerging science. I don’t kid myself for a moment because I know I’ll never be who I was.
But today, where I am going is so much more important than where I was.