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Over the last few years, the phrase "lived experience" has been gaining traction within the brain injury community. 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. As the years passed, I began to better understand what it meant to navigate life with an invisible disability.
Life after brain injury remains a bit surreal. One might think that after fifteen years, I would have mastered the subtle nuances of this second life, but not even close. Occasionally, I am reminded that I live on a different plane than the neuro normals of the world but I've found ways to adapt and celebrate.
March is Brain Injury Awareness Month, my 16th as a brain injury survivor. Looking back, until my life became defined by brain injury, I had never heard of Brain Injury Awareness Month. For several years after my injury, the goal was simple: I wanted to be the person I was prior to my injury. I wanted to be “the old me.” But what if I told you I could be better than my old self in ways I never saw coming?
Living alongside David Grant's TBI was a treatment-resistant case of PTSD. For over fifteen years, he lived with innumerable night terror events. The kitchen calendar counted the bad nights. A good month noted three or four bad nights. A tough month, like last November, came with nineteen night terror events. Last November was as bad as it gets. Life was unsustainable… until it wasn’t.
Last week, while scrolling through my news feed on social media, I had a rather abrupt realization: my life looks pretty normal these days. As I scrolled through my posts from the last few weeks, a picture emerged — a picture of someone enjoying life.
You might be asking yourself what changed. That’s the same question I asked myself. It’s a simple question with a complicated answer.
Brain injury anniversaries are complicated. Like an unseen gravitational force, my mind is drawn back to that day. But this year feels different. My anniversary is still many months away… but thoughts of it are already creeping in at unexpected times.
There is more to wellness than treating brain injury alone. I am a living, breathing, oftentimes thriving human being with a whole lot more than just a brain injury.
And if there’s one thing that I’ve learned from having a brain injury and PTSD, it’s this ... recovery is not linear. There will be gains and there will be setbacks. But equally important, I know that attitude is everything. And despite how tired I can feel, I remain full of hope. And that covers a lot of ground.
As it turns out that pivotal day — when I was hit by a car on my bicycle and sustained a brain injury — opened the door to the purpose-driven life that I now live.
For a long time after my brain injury, I was focused on the conventional definition of recovery. I wanted to get back to the place where I started. I wanted to be me again. But the passage of time, and lots of fighting my fate, have proven to me that there is no going back. I will never “get over” my brain injury. Like my shadow that follows me on a sunny day, I am forever bound to my brain injury. And today, I am okay with that.
"I’ve seen both sides of the suicide coin, both as a surviving family member as well as an actual survivor. I have a deep empathy for those who think life would be better off without them, but I know that they are wrong. When you feel that way, you have no perspective; you are unable to understand that there are people who love you unconditionally and who would be shattered had you succeeded."
The day after I was hit on my bike, a local neurologist literally high-fived me, telling me that I had no discernible neurological issues and sending me on my way. But it became painfully clear almost from the beginning that something was not right.
Looking back over the years, I never expected to live a life defined largely by being a brain injury survivor. Early on, I was completely unable to see that there might be a silver lining to all that has come to pass ...
Time seems to pass faster every year. It feels like just yesterday that I first presented at a brain injury conference. It was 2013, and I was asked to offer the keynote address at the Brain Injury Association of Maine’s annual conference. No one was more surprised than me to receive the invitation.
If, within your own personal or professional circles, you know someone with a brain injury or PTSD who has been living the survivor life for years, please know that time does not equate to freedom from challenges. Reach out to those you know and ask how they are really doing. You might just be surprised by what you hear — and how much your asking means.
Mindfulness has taught me that true and lasting peace only comes in the moment. Right here, right now. In the moment, my past carries no weight, and the future does not exist. Life is truly a succession of moments.
U.S. Navy Ensign Timothy Bleigh clearly recalls when the bomb went off. The Mine-Resistant Ambush Protected (MRAP) tactical vehicle flipped several times through the air before it landed partly on its roof. Bleigh shares his story and reflects on how his difficult recovery, which included a Traumatic Brain Injury (TBI), influenced how he approaches patient care.
I recently heard the holiday trifecta of Thanksgiving, Christmas, and New Year's called the Bermuda Triangle of exhaustion. No one knows this better than brain injury survivors!
The holiday season is upon us and that means family time and reflection. But this year just feels off. I’m not sure if it’s the change of seasons, the upcoming holidays, our added pressures at work, or just the stress of everything going on in the world, but my husband, Russ, and I have both been stressed.
Well, it finally happened. After successfully dodging COVID for over three-and-a-half years, the virus finally struck our household. Since the outbreak, my biggest fear about COVID was having a preexisting brain injury — what might the virus do to further compromise my already challenged brain?
Many years ago, I was introduced to a phrase that, before my brain injury, had not been part of my vocabulary: “compensatory strategies.” Why? Because prior to my injury, there had been nothing to compensate for. I was a fully formed and completely functional adult. Strategies were for board games.