It’s hard to fathom that I am now in year sixteen as a brain injury survivor. Enough time has passed so that I no longer remember who I was before my injury. While those uninjured may not fully understand this, if you live with a brain injury, you get it. Life has two parts: before brain injury and after brain injury. In between the before and after, there was an event. Perhaps a stroke, maybe surgery, or in my case, the event that separated before and after was getting struck by a car.
The impact of my injury was immediate, it was life-changing, and it was difficult. Everything changed in two ticks of a clock. I wanted no part of this brain injury life. I wanted my old life back in its full resplendent glory. I wanted to be who I used to be, and the questions I asked the most to anyone who would listen were simple: “When will I recover, and when will I be normal again?”
Brain injury old-timers, with their sage wisdom, would say the same thing: “Recovery is lifelong.” That was NOT what I wanted to hear. I was going to be different; I was going to fully recover. I planned on defying the odds. But reality had other plans.
For the first decade, recovery gains were tangible. My word-finding became less of an issue. Vertigo that created the appearance of mild drunkenness eventually stopped. While still plagued by afternoon cognitive exhaustion, ever so slowly it lessened. I actually got to the point of being able to work a full day and not suffer for days afterward. I was indeed recovering, but during that time I stopped trying to get back to who I used to be. That ship had sailed.
Somewhere around the ten-year point, the gains that can be defined by data points stopped. There was no meaningful change in my challenges, but I was still recovering. How can that be? What I now see clearly today is that while my gains had mostly ceased, every day I added to my new record of living a post-TBI life meant more lived experience. And with that lived experience comes a relative ease of moving through life. I knew to expect weariness after a heavy cognitive load. I knew that I had to dial down the day following a bad PTSD night. I knew that pacing was an important part of living with my injury.
As the years passed, though the challenges didn’t really change, I was slowly becoming an expert at living my post-injury life. I was okay with the fact that tangible gains had stopped, but that more lived experience meant a better quality of life. Life as a brain injury survivor had become… sustainable. My recovery had become defined by acceptance of what I have, and the willingness to live within the self-defined boundaries that were healthy for me. Never did I imagine last November that I was on the cusp of the biggest breakthroughs.
Living alongside my TBI was a treatment-resistant case of PTSD. For over fifteen years, I 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.
Fifteen years of seeking solutions. Psychotherapy, EMDR, talk therapy, peer support, and years of medication did nothing. This was the sensitive underbelly of my life. Years ago, I gave up on hoping it would pass. That was an exercise in futility. But very abruptly, in early December, my night terrors stopped. At the time of this writing, I am starting my seventh week without a single PTSD night terror event. To frame this with a bit of life context, I was in my forties the last time I went over a week without night terrors. I am now 64. It has been part of the very fabric of my life for a decade and a half.
And now it’s gone.
While I am hard-wired toward optimism, I am a realist. Only time will tell if this is my long game. Almost every day I share my joy with my wife, Sarah. When I wake up at midnight screaming, covered in sweat, and inconsolable, she is affected. When I sleep, we both sleep.
The big-picture takeaway is this: this is not developing skills to live with a challenge. This is the cessation of one of my biggest challenges. This is not recovery by familiarity; it is recovery that is definable and tangible. I am cautiously optimistic. Somewhere, years ago, I read that for many, PTSD nightmares become less frequent over time. Maybe this is my time for relief. Better sleep is a game changer. And right here, right now, I feel like someone should pinch me. I really can’t believe that I am sleeping again. Bring on the second half of my second decade as a survivor. Who knows what else might change!