To Share or Not to Share: Life After Brain Injury

To Share or Not to Share: Life After Brain Injury

I have so often referred to the first year or so after my own traumatic brain injury as “TBI boot camp.” It was undoubtedly the hardest year of my life. Nothing, absolutely nothing in life can prepare you for all that encompasses a brain injury.

The first year or so was painful as life-long friendships dissolved. It was financially abysmal as my ability to work on a full-time basis stopped the moment I was struck by a teenage driver while cycling. My sense of self was as shattered just like the windshield that I flew through.

They were tough days indeed.

As time passed after my crash, my broken and bruised body did exactly what it was supposed to do — it healed. My brain was another story, but I underplayed it. Well-intentioned friends would ask how my recovery was progressing. My stock answer for much of that first year was about the same, perhaps with a touch too much enthusiasm: “Other than my traumatic brain injury, things are progressing as well as could be expected.”

The loss of my emotional and social filter was one of the reasons I found it easy to talk about my brain injury. But sadly, so was my naiveté. Don't let anyone kid you. There is still a very real social stigma attached to having a traumatic brain injury. Just ask those souls who used the opt-out option and quietly faded into the background of my life.

It's been several years since I graduated from TBI boot camp. The reality is that I have to live daily in a world where most of those I come in to contact with do not have a TBI. These days, I have adopted much more of a "need to know" approach when sharing. In fact, even the terminology I use has changed.

If I am in a position where my brain injury needs to be talked about, or is even referenced, I use a bit of finesse. Comments like, “I still live with some long-term challenges from a concussion,” seem not to alienate others. Unlike the sometimes awkward silence that on more than one occasion has come from calling my brain injury by name, the use of the word “concussion” seems to be accepted by others much more easily. While “brain injury” carries a stigma, “concussion” does not.

This may sound like a small point, but in reality, it is not. I have come to really cherish those relationships that have stood the test of time. I have some loyal friends and family who knew the "old David" and who accept me as I am today. I do what I can to maintain those relationships.

This brings me full-circle to over-sharing versus under-sharing.

During that first year, not a day went by that I didn't talk about my brain injury. My wife, Sarah, bore the brunt of my endless TBI monologue. Looking back with the benefit of clarity that comes only with the passage of time, I realize I needed to talk about my traumatic brain injury. I needed to work through what was the biggest life change I never expected to happen. I needed the ability to hear myself sort through the chaos and fear. Daily, I would talk about my vertigo, my incessant ear ringing, and the ambiguous grief if felt as I realized I was never going to be who I was before my crash. The list goes on.

And Sarah listened.

Over the years, I have found it unnecessary to continue to share every hill and valley of my day-to-day challenges. This is partially because I have come to accept that this is my life. But also, by speaking of it incessantly, it again becomes center stage, and we’ve both had enough of that.

This past summer, I did what I do most every day — I went out on a 25-mile bike ride. Occasionally, I deal with memory lapses. My damaged brain ceases laying down new memories for a while. On that particular summer day, something happened. I blinked my eyes only to find that I had travelled to a point a half-mile or so away from home with virtually no recall. In what amounts to a sign of post-traumatic growth, or maybe full-throttle acceptance, I regained my bearings and simply continued along with my ride. It really is amazing what you can learn to live with. I came home, showered, and told no one. There was no intent to be evasive. No desire to hide anything. Rather, I chose not to say a word as I just chalked it up as part of what my new life entails.

Over the years since my TBI, I have developed a very strong passion for living transparently when it comes to my brain injury. I often write about many of these events that define my new life. Much of what I write ends up on my personal blog.  And on the day of my amnesia ride, I wrote and posted the story without as much as a second thought. And, as it so often happens, other people with TBI chimed in that my experience was in virtual lockstep to their own.

Later that week, however, my Dad and I spoke. He shared that he had read of my experience and shared it with my mom. My dad is 81 and mom is not far behind. I do all that I can to see that they don't worry about me. I was immediately conflicted knowing that others with TBI need to know that they are not alone while, at the same time, wishing that my dad had not chosen to read that particular piece.

But the real game-changer was when my Sarah shared something I had not even considered. “If anything ever happened to you, it’s important that I know of anything like this. I need to know if you are forgetting your bike ride, or parts of it.” Suffice to say, she was right. Life with a brain injury means that I live in a world where things can change in an instant.

Just as I learned that there is tangible effect on others depending on the specific words I use in describing my brain injury, it’s equally, if not more so, important that anything that falls into the "”big stuff” category is properly discussed.

I continue to learn as I go. We all do. Rather than beat myself up for any miss-steps, I'll just call it a learning experience.

Just like recovering from a brain injury is a life-long experience, so is learning to live life as a a person with a brain injury.

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