Over the last few years, the phrase "lived experience" has been gaining traction within the brain injury community. As I approach my sixteenth anniversary of my own brain injury, I certainly have banked a lot of lived experience.
If I only knew then what I know today, my early TBI life would have been infinitely easier. But it's called lived experience with just cause. While I have become a lifelong student of all things brain injury, life has been my biggest teacher.
Early on after my injury, for many years in fact, I really didn't fully understand how much my injury would affect my daily life. It was all new territory. Life was unfamiliar. Life was difficult. Life at times was unsustainable.
But every season of challenges brought with it new lessons. And as the years passed, I began to better understand what it meant to navigate life with an invisible disability.
Long fans of Disney World in Orlando, our first few vacations post injury ended in disaster. The time spent under the Florida sun was wonderful. At the time, it felt healing. It felt familiar. And it felt restorative.
But that quickly passed. I soon learned about post vacation brain injury hangovers. We'd fly back to New Hampshire and rather than feeling refreshed on the heels of a great vacation, the exact opposite happened. I was stuck with a level of exhaustion that I never experienced in my pre injury life. But it was more than just being tired. I would lose my ability to speak without stuttering. My processing time slowed down to the speed of molasses. Brain fog came back with a vengeance. It was... horrible. It was also unpredictable. It could last for a few days, or a couple of weeks. Such is the unpredictability of life after brain injury. But over the years, I learned that it always passed.
Earlier this month, I had the experience of a lifetime. My wife Sarah and I, along with many family members, took a trip to western Canada and Alaska. It was a true bucket list experience. We saw countless humpback whales, killer whales, and my all time favorite, sea otters. We took trips to two glaciers, paddled a canoe in glacial meltwater at the foot of one of them, and got up close and personal with the most amazing landscape of our lives. We visited places that we only dreamed about, adding Ketchikan and Skagway to our life list of places we’ve seen. By the time we were home, I had stacked eleven busy days together, days that often started well before sunrise, and ended long after sunset.
All the while I knew that there would be a price to pay, but I came to this experience prepared for it. I was not blindsided by my post trip exhaustion like I was early on. And as I've learned along the way, I eventually bounced back. This time it took a week, and I had no regret.
But time has a way of being a teacher. As the years continued to pass, I developed a deeper understanding of what I was living with, not because of reading about life after brain injury. Rather, every year that passed meant that my lived experience broadened and deepened.
Today I know what I have, and I know that there are times that I'll pay a price for trying to do more than I was previously capable of. But today, I happily pay the price. I know that a period of recovery will be required, and that I will eventually get back to normal, whatever normal is!