Anoxic Brain Injury is Like an F5 Tornado

Recovering From a Brain Injury: One Book that Doesn’t Exist

Plenty of books have been written about the brain, brain injuries, and neuroplasticity (which is changing the brain). There are numerous medical protocols that doctors follow to help a patient who has suffered a brain injury to survive and have a decent degree of functioning.

One of my neurologists explained that a stroke, while life-threatening, is relatively easy to diagnose and treat. An average neurologist would be able to look at a brain MRI of a stroke patient and easily know the patient might have trouble with speech, or controlling their right arm and leg.

Anoxic brain injury is more like an F5 tornado. Imagine yourself standing in a pile of rubble. It’s impossible to tell that a Walgreens used to be in that spot, or that you’re at the corner of Market Street and Maple Avenue, or even what part of town this might be. You can’t recognize anything. You just see destruction all around.

Same Tornado, Different Degrees of Destruction

I live in Ohio, and we’ve had our share of tornadoes. In 1985, a tornado ripped through the county north of me. Homes and businesses were demolished and 12 people died. Damages were estimated to be over $140 million. I remember the tornado’s effect on our family. Some trash blew in our yard.

That’s how tornadoes generally work. One area can be destroyed, but a few miles away, you wouldn’t know there even was a tornado. That’s also how brain injuries work. A brain MRI might show that an area of the brain was affected, but it can’t tell you what problems a patient might now have as a result. It would be like holding a piece of trash and asking someone to determine the extent of damage a tornado caused. It’s impossible.

So neurologists have to rely on patient complaints. That’s why the journey to recovery after surviving is so long. It’s impossible to recover from a condition when you don’t know you have the condition. I’ve told my doctors that I felt dizzy all the time, or fatigued, or had trouble remembering certain things, like how to pump gas. Each of those things can be caused from any number of conditions. All of mine occurred right after cardiac arrest. Regardless, there's no template a doctor can apply to survivors of anoxic brain injury. Anoxic brain injury impacts each patient differently, just like a tornado has a different impact on each home.

While there are many books on brain injury, there can’t be one book that covers it all.

Cardiac Arrest and Brain Injury Survivors Can Feel Lost

Pick just about any medical condition, and you already know someone else who has it, or had it. Digestive issues? Someone else you know has had that. Low back pain? Most people have had to deal with that. Migraines? Everyone knows someone who has suffered with those.

They can tell you what to expect, recommend where to get treatment, what treatment looks like, and how to manage symptoms. Surviving cardiac arrest and resulting brain injury don’t work that way. Each one causes numerous other conditions, and the conditions are different for each survivor. In some cases, there isn’t a definitive diagnosis of what is causing your symptoms. So, there are no real answers on how to resolve them. It’s one thing to know there is a long journey ahead. It’s another when you don’t know where it even starts.

Lance Adams: Rare isn’t Always Wonderful

A few years after cardiac arrest, I was diagnosed with Lance Adams Syndrome. It’s a rare neurological syndrome. Most doctors have never heard of it. It’s so rare, even some expert neurologists haven’t heard of it. The reason it’s rare is that you only get it from surviving cardiac arrest. Most people don’t survive. That’s what makes it rare.

Lance Adams Syndrome causes three main symptoms: Action-induced Myoclonus: sudden, brief, involuntary muscle jerks triggered by voluntary movement or even the intention to move; Aphasia: a cognitive communication disorder, an impairment of either expressing yourself accurately or clearly understanding someone else, or both; Gait Ataxia: uncoordinated and unbalanced walking, which sometimes causes falls, running into walls and furniture, or tripping up the steps.

I had never heard of Lance Adams Syndrome, nor of any of these symptoms, but I had all of them after cardiac arrest, plus others I still couldn’t name. Symptoms never show up as a clearly defined thing. Instead, on a particular day, I bumped into the doorway in my house. Everyone does that. I couldn't understand some simple instructions. Chalk that up to a miscommunication. Those unwanted movements… I didn’t have an answer for those.

Over time, you eventually become more aware of those unusual symptoms. You realize those aren’t normal, and they frequently happen. So it requires explaining those symptoms to your doctor. Of course, when I shared my symptoms with my doctors, they weren’t in a clear list. Things were cloudy, and patterns felt inconsistent. That meant my doctors had to put puzzle pieces together, run tests, and who knows what else to get a diagnosis.

After the diagnosis, it’s empowering to know you can manage symptoms. At the same time, managing symptoms is one more burden.

You’ve watched the news after a town is awakened by a tornado. Imagine someone picking up a piece of wood from the rubble, and asking if you know where it belongs. It’s nearly impossible. Figuring out symptoms after a brain injury can feel like that.

I remember a story on the news a few years back. When the Mississippi River flooded, a man living near it lost his home—for the third time. I was shocked to hear him say he planned to rebuild. I’d move as far from the river as possible. Somehow, that man wouldn’t be deterred by threat of another flood.

Tornadoes and a brain injury aren’t similar at all, but they both cause devastation in different ways. I did not—could not—rebuild my life on my own strength. Family and friends lifted me out of hopelessness, and my faith empowered me to rebuild one piece at a time.

You may be standing in a pile of rubble with a piece of wood in your hand.

Rebuilding is by no means easy.
It is possible.