Today on Brainline: The Inherent Uncertainty of Life After Brain Injury by David A. Grant

Living life with a brain injury is complicated. In my case, my injury is invisible most of the time. This can be both a blessing and a curse. I can move about a world of neuro-normals unnoticed. But the reality is that I have a disability that most never see, and even fewer will ever understand.?

In this month’s Brainline article, I offer a peek behind the curtain into what it’s really like living with both PTSD and TBI. Many will see themselves in my experience. And it what amounts to a moment of amazement, later this year I’ll mark my ten-year anniversary as a Brainline contributing writer.?

They say that when life throws you lemons, make lemonade. I’ve had one heck of a run in my own personal lemonade stand!

?Peace.

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The Inherent Uncertainty of Life After Brain Injury??

If there’s one thing that is all but guaranteed after a brain injury, it’s uncertainty. So much of what we face as survivors is unique to the brain injury community. Brain injury is often — but not always — invisible to others and no two brain injuries are alike. The challenges I face are often different from those other survivors face. Often invisible, and always unpredictable, brain injury is a unique confluence of challenges.

Imagine people with different health challenges, for example. If a medical profession suggests to those people that they drop a few pounds and get some exercise, it’s close to a sure bet that their body will thank them in many ways. Perhaps they will be rewarded with more energy , better sleep, or a renewed sense of overall well-being. But brain injury is not like other injuries or conditions. As survivors, we can closely follow all the directions we receive from medical professionals but, much to our frustration, still fight invisible and very long-term battles — some of which can be debilitating.

In the dozen years since my own traumatic brain injury, I’ve been an ardent follower of suggestions, so much so that today I’m in the best physical shape of my life. I eat reasonably well and remain committed to daily cardio. Very few days pass that I don’t hit my 10,000 daily step goal. Not too bad for a 61-year-old guy!

“A healthy body helps with overall brain health,” I have been told over and over, and I remain committed to this philosophy. Living mindful of my TBI and PTSD, I shun triggers, and my wife, Sarah, and I have adopted a quieter and more peaceful lifestyle.?But, as I continue to learn, I can do everything right and still suffer gravely from both the effects of TBI and PTSD.

Last month, Sarah and I went away for a much-needed mini vacation to a hotel on Disney property in Florida. It has been a familiar location for us long before my brain injury. But even at what Disney self-describes as the “Happiest Place on Earth,” there is often more than meets the eye.

Our second night there found us in an all-too-familiar moment as Sarah pulled me from a horrific nightmare, something she’s done hundreds of times before. What made it especially frustrating is that we were in a 100 percent stress-free space. Our day had been glorious, defined by hours spent birdwatching. That night, we went to bed completely relaxed and peaceful. But a few short hours later, there we were with my writhing and yelling in bed, abject terror and adrenaline coursing through my veins, in the midst of a PTSD event.

I didn’t pack my PTSD in my carry-on, but it smuggled its way in nevertheless. There were no easily discernable reasons nor triggers from the day prior that could have predicted a bad night — but there we were. Again.

How I wish that I could share that that was all I faced, but there’s more. The next day we skipped the theme parks again in favor of an animal expedition. It was up-close and personal and perhaps one of the most exciting and moving experiences we’ve ever done together. But with high excitement can come a steep price. Shortly afterwards, a wave of emotion hit me so hard that my knees actually buckled. Tears filled my eyes, my face flushed, and it was an almost instantaneous emotional overload.

Today I know it by name: emotional flooding. It’s something that I never experienced before my injury. Like PTSD robbing some of my nights of peace, flooding can quite literally knock the wind out of me. It comes at unexpected times, often after emotional overload.?

Back at home, I took some time to process these vacation events and the takeaway is actually a very simple one: I can do everything suggested to me by well-intentioned professionals —and I do mean everything — but still have events happen that negatively impact me in profound and uncomfortable ways.

I need to remind myself that I’ve done nothing wrong and it just goes with the brain injury/PTSD territory. There will always be a level of uncertainty and unpredictability that comes with my life post-injury. The good news is that I have a better understanding of why. And with that understanding comes a level of peace. Today I know that even during the toughest times, I possess the strength to get through it.

And such is my wish for you … I hope you realize that you are strong enough to face whatever fate puts in your path.??

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