Life after brain injury is, if anything, surreal. Just when you think you’ve mastered life as a survivor, something else happens, something you never saw coming. The silver lining is that one of the skills that can be mastered after brain injury is simply the ability to roll with things, to not get flustered, and to understand at a deep level that it’s just part of the journey and that, in the end, all will be okay.
It was not always like this. Early on, when new symptoms presented, it was off to yet another doctor’s appointment. Fifteen years ago feels a bit like the Middle Ages of medical care for those of us with brain injury. I went through neurologists more quickly than I changed my socks. Most were well intentioned but lacked the experience to really help. No harm, no foul. At any given moment, most people are doing the best they can.
As years passed, I got used to the fact that today and tomorrow might look the same on a calendar, but in practicality, they may be as different as apples and zebras. Catch me on a “good brain day,” and I can pass for uninjured. Meantime, if we happen to cross paths on a “bad brain day,” you might wonder if I’m fit to be out alone. My cognitive pacing makes molasses look speedy, and my answers to ordinary questions can be puzzling. While I might look the same, I can be two different people. While this may sound odd or confusing, to those within the brain injury community, these are everyday occurrences.
Rounding the corner to sixteen years as a survivor, I am close to unshockable. But still, I am human, and sometimes I find this reality to be… unsettling. Such was recently the case.
My wife Sarah and I just celebrated our seventeenth wedding anniversary. For close to sixteen of those years, she’s been married to the post injury me. Suffice to say, we have adapted very well to the twists and turns of life. In our private world of two, anniversaries are something to be celebrated. We’ve definitely beaten the odds in so many ways. This year we opted for a trip to western Massachusetts and New York State. An area we are familiar with, we did familiar things at familiar places with a familiar feel. There is a comfort that comes with this type of travel.
Long before everything changed, I was a planner. Sarah has fondly said, “All I need to do is show up.” I planned a day trip to caverns in central New York. Howe Caverns has been drawing adventurous tourists like us for over a century. It’s just our speed: fun, a bit of adrenaline, nontraditional, and PTSD safe. It checked all the boxes. I planned on an easy day, caves, lunch, and a bit of sightseeing.
As we pulled up the long and winding driveway, Sarah asked if I remembered being there. My lightbulb burned dimly, and I shared that I had absolutely no recall of being there. As we moved through the experience, her words were the same. “How about now? Do you remember this?” But still, the bulb remained off. At 160 feet underground, getting ready to board a boat to tour a subterranean river, the same question. “Surely, you remember this?” My blank stare said more than words were capable of. It was my first time there, at least in my mind.
I’d like to say it didn’t bother me, that I was used to having repeat first time experiences, but that wasn’t the case. The experience was sensory rich and should have been unforgettable, yet there I was with virtually no recall of ever being there. And for as strange as that was, it was about to get even stranger.
One of my compensatory strategies involves taking lots of pictures. Most anywhere I go, my phone is out to snap a couple of photos. Known by some, but not all, Google stamps photos with data not visible to the human eye. The date, location, time, and more are all easily found through the Google Photos app. Checking my app later that day, I found dozens of photos from our 2014 trip to the same location. The same building, the same cave pictures, the same underground boats, and the same David and Sarah.
But none of it looked familiar.
For many years, I was painfully aware that the year after my brain injury, the entire year of 2011, had been stripped from my memory. I was okay with that. They were tough times and probably best that my recall was gone. But it now looks like the hole in my memory may extend much farther than I ever realized. To think that entire pieces of my life, of my experience, no longer exist is devastating.
I gave thought to using my Google Photos as a bit of a Wayback Machine, to see what else I did that year. But my own self-care means being as gentle as possible to… well, me. I chose not to look, fearing what I might find and knowing that it wouldn’t be good for me.
In another few months, another anniversary: sixteen years surviving life. I’ll continue to take lots of pictures and live my best life. And maybe it’s best that I don’t look back. Life happens in the moment. It’s there I’m safe.
But man ‘o man, if you see 2014 anywhere, please let me know.