Jon Johnston

I Turned Six Today

Grandma Ida and my family

My family, friends, and neighbors refer to today as my re-birthday. I’m okay with that moniker, but it doesn’t tell the complete story. My original birthday was June 6th, 1962, and that was my birthday until my 54th year, when everything changed.

On August 21st, 2015, I suffered a widowmaker heart attack that left me dead for over 20 minutes. I was at a customer site working, thinking I had terrible heartburn. I took my glasses off, put them on the table in front of me, rubbed my forehead and fell over dead on the floor. My colleagues tried to figure out what was going on while while waiting for an ambulance. An ambulance arrived and transported me to Hennepin County Medical Center in downtown Minneapolis. I was shocked five times along the way with no response. I was shocked two more times in the ER at which point my body began to pump its own blood again.

The cardiology team performed a coronary angiogram and determined my left anterior descending (LAD) artery is completely blocked because of cholesterol buildup. The LAD is more commonly known (by lay people) as the “Widowmaker,” making what I had a “Widowmaker Heart Attack” which is just as terrifying as it sounds.

The solution to keeping me alive is to put a stent, a mesh tube, in the LAD artery to get the blood flowing again. I am put into a coma after the stent is placed to save my brain function. My wife was given the “He’s in God’s hands” speech and my children were told to come back from their vacations because I probably wouldn’t survive. I spent the next 10 days in the hospital, of which I remember very little.

I received a second stent in January 2016 after I again experienced heartburn. All the while I struggled with severe headaches that were so debilitating I’d have to spend the day in a dark room lying in bed. It was extremely painful to look at any light, so I couldn’t use my phone or computer to do any work. I complained about headache pain for months until I got a brain MRI in May 2016 which led to the diagnosis of an anoxic brain injury.

I had gone back to work as quickly as possible because I didn’t believe my heart attack was that big a deal. I thought it a minor set back, and I’d be back at full power in no time. All I had to do was follow my doctors’ instructions, take the drugs, do the exercise, and I’d fully recover. That idea got destroyed during the episode of my second stent when my cardiologist and I discussed having an implantable cardioverter defibrillator (ICD) installed in my body. My cardiologist asked me to consider it because my EF was very low. Ejection fraction (EF) is a measure of how well your heart can pump blood. Normal is 50–70. 35 was considered by my cardiologist as the cut off point for having the ICD installed.

The thought of having a device installed in my body made me incredibly angry. It forced me to face that I’d been lying to myself. Part of my heart was dead and nothing will change that. I was angry at my own body’s betrayal. I’ve been physically active all my life, ate a healthy diet, and never smoked. There was never any sign of high cholesterol or any other heart health issues that could have led to this. I even went so far as have my family doctor go through years of physicals to see if there was any indication we missed and there was not.

Most people are interested in the death part of my recovery. The most common question I get is “Did you see a light?” I didn’t see a light. I didn’t float above myself, didn’t see heaven, old friends, or deceased family members. The “light” question was cute at first, but after a while it became incredibly annoying.

I started making up jokes to combat my irritation.

“Yes, I saw a light, but it was from flames.”

“Yes, I floated above the hospital,” I’d say. “I watched the Minnesota Vikings losing in their own stadium.” (Vikings fans found this particularly annoying which I thoroughly enjoyed.)

My sister Mary asked about seeing a light. I made up a story that our father, who had died when I was 12 of pancreatic cancer, led me on a tour of hell.
“The doorway to hell is in a dump south of Jacksonville, Florida”, I told her.
(If you’ve ever been to Jacksonville, you know what I mean. The entire state of Florida is, in fact, the first level of hell. This is easy to comprehend.) I told her how dad took me on a tour of several levels of hell. I paused for a moment only to hear Mary sniff and say, “Dad’s in hell?”.

She questioned why Dad was in hell, but she never wondered about me.

Thanks Mary.

I always felt people asked the wrong question. The right question is — How did it feel being dead?

Being dead was the most peaceful feeling I’ve ever experienced many thousands of times over. The peace was so strong I still refer to it as a “black hole of peace”, because it keeps drawing me back to it. I still feel, six years later, a strong desire to experience that peace again. At the time, people were congratulating me on being alive, but I was pretty ambivalent. I knew that my wife and family were glad I’m still here, but it was hard to admit I didn’t care as much because of the level of peace I experienced.

Even now, I have no fear of death. I’m not worried about living a long life. I am not suicidal. I simply don’t carry the burden of mortality anymore. It is as if an enormous weight has been lifted from my life. Death doesn’t feel like an ending, but as a passing on to whatever is next.

Recovering from the heart attack has been relatively easy. The heart is a pump. My pump doesn’t work as well as other peoples’ pump because part of it is dead. There are complications and the medications’ side effects can be quite debilitating, but modern medicine has a very good understanding of the heart.

When it comes to the human brain, it’s like they’re scratching drawings on a cave wall.

I am better off than most. I have recovered much of my life. I work a full-time job as an IT consultant. I run a sports website called Corn Nation. I write. I podcast. I have a sports-based YouTube channel and I do photography. I’ve had to fight hard to recover that much of who I was and what I can do.

There isn’t a lot of public awareness regarding traumatic brain injuries. The Susan G. Komen Foundation has done an excellent job of making everyone aware of breast cancer. The American Heart Association has done a good job of making people more aware of heart disease. People still eat fat and salt like there’s no tomorrow, but at least they’re aware it’s going to kill them.

There’s almost zero awareness of what it’s like to have a traumatic brain injury (TBI). Every traumatic brain injury is unique. It is an invisible injury. I have been dead for over 20 minutes and there isn’t a single scar on my body. The joke is, “the scars are on the inside”, except it isn’t a joke.

I’m pretty sure I can speak for other TBI survivors when I say a TBI destroys everything you think you are. I go for walks and honestly contemplate if I’ve been kidnapped by aliens; that these memories are false and been planted inside my head. Perhaps I was kidnapped and brainwashed by Russians because we blame them for everything. Maybe we’re living in a simulation and none of this is real. Or perhaps I’m in purgatory and I still have something to prove, a theory that seems to fit well since I was rejected by both heaven and hell. Why else would I still be alive?

All of those theories may sound silly but they are very real to me. Having a TBI rips away your perception of reality; everything you thought you knew that was real is questionable.

Doctors don’t give you a timetable for recovery because there is none. This isn’t a broken arm, where your arm is put in a cast for a set period of time after which it’s considered “healed”. It took me at least two years to understand I will never fully recover. At six, I’m not 100% sure I’ve fully accepted it. What I know for certain — I will never stop trying to become the best I can be. Bad days happen and the worst thing I can do is remain in that darkness, knowing it will pull me into a well of self-pity from which no good can come.

A commonality amongst TBI survivors is doing our best to hide our injury, partially because it’s invisible, partially because we want to fit in, but mostly because almost no one understands. The mental fatigue from even menial tasks is overwhelming; it makes no sense to anyone else that when I try to do math, I end up exhausted with a severe headache in a matter of minutes. Trying to explain to someone my hearing is fine but my audio processing is terrible when I try to understand an accent or if there is any background noise is impossible. I barely bother anymore.

The reaction to telling someone I have a brain injury is illuminating. I’ve seen the look on your faces. Your first response is to look for an exit. Your second is to wonder if I’m about to go on a killing spree. I get it. There’s no frame of reference for you.

One of my goals is to change that.

According to the Brain Injury Alliance,

• 2.8 million Americans sustain a traumatic brain injury every year.

From 2006 to 2014, the number of TBI-related emergency department visits, hospitalizations, and deaths increased by 53%.

• Traumatic brain injury (TBI) disables SIX times more people each year than spinal cord injuries, multiple sclerosis, HIV/AIDS, and breast cancer combined.

Note that increase from 2006 to 2014. Up to date statistics are difficult to find, but I am betting the number of TBI-related emergency visits have increased a great deal more.

My hope is I can help more people understand what TBI survivors are going through.