Before I was struck by a car in November of 2010, it’s safe to say that I knew absolutely nothing about brain injury. I had never knowingly met a brain injury survivor, all-things-concussion had yet to make the national headlines, and a concussion was something simple that you got if you bumped your head.
My life as a student in “Brain Injury Academy” was not my choice. But early on, my wife Sarah and I began to understand that the more we learned, the more power we had. Knowledge gave us the power to ask the right kind of questions. Knowledge gave us the power to say to someone who crushed our hopes, that our lives would be better off without them. And in a completely unexpected twist, knowledge gave us the power to serve others within the brain injury community. We understood brain injury better than many “professionals.” Me, because I lived with it, and Sarah, because she had a front-row seat.
Looking back over the years through the prism of time, we have gained stunning insight into this often-misunderstood condition. Nothing beats on-the-job training.
Early on, we learned a whole new vocabulary. Words like aphasia and neuroplasticity are not commonplace outside the neuro community. Then there was the letter game. There were countless acronyms to learn. EEG, PTDS, TBI, ABI… the list goes on.
Let’s not forget the relational lessons.
Relation Lesson 101: People Leave Your Life.
Relation Lesson 102: Those Who Stay Treat You Differently
Relation Lesson 103: The Person You Once Were is Gone
These few examples barely scratch the surface of all that we have come to learn about brain injury. Next month marks my eight-year brain injury anniversary. This equates to eight years of hard knocks training. Think about this: Had I been in a traditional learning environment, I would have earned an advanced degree by now.
Over the years, we have learned that our knowledge has immense value. Both Sarah and I have been very open advocates within the brain injury community. It has been the biggest silver lining to what might have been nothing but a dark cloud.
But never did I envision that brain injury would strike our family again. Lightning is not supposed to strike twice – but it did.
On September 9, a few short weeks ago, my mom sustained a brain injury in the form of a cerebral hemorrhage. We have watched mom struggle with word-finding, and her new cognitive challenges mirror many of own.
Early on, I thought that all brain injuries were traumatic. Over time, as I moved through Brain Injury Academy, I learned that there are traumatic brain injuries as well as acquired brain injuries. While the root causes are vastly different, the aftermath is the same. It’s akin to different lyrics set to the same music.
At the time of this writing, mom is still in the ICU at a local hospital. Her future is uncertain at best, and we have been told to prepare for the worst possible outcome. But amidst the tears, the overwhelming exhaustion, and the outright fear that we are going to lose her comes profound gratitude. We are able to use our experience to better help mom and to share with our family what she is going through in more understandable terms.
For the first time ever, I am a caregiver – something I never saw coming. We have spent countless hours bedside, and when we aren’t with mom, we are thinking of her. It is exhaustion without end, but one I would sign up for in a heartbeat. It’s my mom we are talking about.
You may not have noticed that I repeatedly use the word “we” in sharing our experience. This is not by chance. No one moves through the challenges that brain injury brings alone. Sarah and I are the “we” that I have repeatedly referenced. If brain injury is part of your life, I hope you are part of a “we,” for together we can do what I cannot do alone.