Long Brain Injury?

David and his wife smiling in bright pink Hawaiian shirts

Well, it finally happened. After successfully dodging the virus for over three-and-a-half years, COVID finally struck our household. Both my wife, Sarah, and I are on the mend from a rather dreadful bout of the virus. Being immunocompromised and over 60 years old makes me high risk for some pretty nasty complications, something that has been front of mind for years.

When the pandemic struck back in 2020, and data started to emerge about the long-term challenges faced by survivors, it was a hauntingly familiar narrative. Brain fog was a challenge for many people, slow processing times were noted repeatedly, and so much of the emerging information sounded similar to what those of us in the brain injury community have been living with for years. Here was an entirely new population of people now living with neuro challenges.

Singularly, my biggest fear about COVID was having a preexisting brain injury — what might the virus do to further compromise my already challenged brain? That fear kept me up at night. As time passed, and recovery from COVID proved to be non-linear, the term Long COVID began to permeate society. Barely a week would pass that I didn’t hear the term Long COVID on the news. Medical authorities were interviewed, and support groups for people living with Long COVID started to pop up, as those new to neuro challenges struggled to regain their footing.

While Long COVID is a relatively new condition, what about Long Brain Injury? What about those of us who have been living with long-term neuro challenges for years, and even decades? I can’t help but feel like we are akin to the Land that Time Forgot. While I am acutely aware that the pandemic has been the toughest blow to humanity in a very long time, it feels like the media spotlight never seems to shine on brain injury.

It’s estimated that 55 million people worldwide live with a brain injury. The NIH also openly admits that this is most likely a very low estimate. While many people do eventually recover, there are many of us who live with Long Brain Injury. Like our COVID cousins, we struggle with cognitive challenges. Many of us have been sailing life’s seas with thick brain fog for years, and let's not forget fatigue. Last month, I learned firsthand that COVID fatigue is similar to — yet, vastly different — from neurofatigue. Having both COVID and brain injury fog at the same time was debilitating. Now, more than a month since my first positive COVID test, I still struggle to make it through some days.

The lessons continued as my COVID-inspired lack of concentration has made life with a brain injury even more of a challenge. Brain fog means that I have to “think harder” to move forward. Over the years, I’ve likened it to the mental equivalent of walking through waist-deep snow. My newly discovered concentration challenges mean that not only am I mentally walking through deep snow, but I also simply forget where I am even going. It’s been quite a ride.

I am one of many who live with Long Brain Injury. This month marks 13 years of living with many cognitive challenges. Over the years, life has gotten easier — not because my symptoms have abated, rather because are familiar and predictable. Knowing what I’ve got takes me to the 50-yard line. Learning how to live with what I’ve got means that I’ve got a decent chance at a reasonably happy and productive life.

All of this is complicated. While there has been a bit of forward progress in public awareness about brain injury, the reality is that we have just scratched the surface. Call it what you will: Long Brain Injury, Post-concussive Syndrome, Brain Injury Survivorship — there are plenty of us out there who struggle. At last count, at least 55 million of us.