Hell, What?

In late April 2014, I woke up one morning lying down in a ‘sitting’ position in a hospital bed, and I was asked the date.

But not the day or the month. The year. The doctor, dressed in his usual whites, stood to the right of my bed and asked me the year.

It took me only a short while before confidently saying “2012”.

No.

“2014”, he replied.

Two years off. I didn’t reply at all. All I thought was: “fuck”. That and “What the fuck is going on, and where the fuck am I?”

“Who is the President?” I didn’t know. “Where are you?” I didn’t know.

What’s your son’s name? “Ben?” I replied.

My son’s name is Henry. His best friend at the time was named Ben.

For the next 6-8 weeks, daily, I was asked the date, my name, where I was, asked to follow nurses’ and doctors’ fingers, touch my nose and their fingers as quickly as possible (which was initially practically impossible.)  To smile, stick my tongue out, etc.

Just before that – my “awakening” – I felt like I was in a dream. I had weird, weird dreams about friends and colleagues dying, marrying, one of them getting pregnant by someone else who then died. I thought a lot about the iPad mini, and, gee, wouldn’t it be cool if Apple and Steve Jobs came out with something like that – it turned out they had. I’d even purchased four different versions over the past two years.

I was convinced the MacBook my wife was carrying around the hospital room every day was a PC pretending to be a “MacBok” and was dismayed that she had been hoodwinked into buying a PC laptop.

I believed that all the doctors who visited me wore thin ties of varying colors. I became infatuated with wanting to grow a beard like Paul McCartney’s from his 1970 album “McCartney.”

At that time, I was in what I now know is called an ‘acute confusional state,’ though in my case, I believe a reasonably quiet and just dreamlike one.

I was slowly recovering from a four-week coma in the Neurology Department at Johns Hopkins Hospital in Baltimore.

Sorry, I said “coma.” “Medication-induced coma” is the term I think they (the doctors) preferred to use. So, as a result, my mind was coming up with all kinds of weird, weird shit – hallucinations. It’s tough to describe looking back.

Sleeping. Dead?

I still rely on my wife to tell me what happened, but essentially, I was taken to the ICU and medically sedated to stop my body from attacking my brain. I was put on medications, and a ventilator was used to keep oxygen pumping into my lungs. They hooked a tracheostomy tube to my throat, and I was fed through a tube in my stomach. The scars are still there, a constant reminder.

I can’t imagine. I cannot imagine what must have been going through my wife’s mind. I asked her later whether it looked like I was simply asleep, and she said, “No, it’s more than that—it’s like you just weren’t there. You just totally wasted away.”

“Dead.” It lasted four weeks. My wife spent every day during that time, arriving every morning and leaving when they closed shop.

She later told me, many years later, that she thought she was in control of her life until this incident. It changed everything.

It was a ball hit out of a ballpark, and the pitcher had no clue.

I lost 40 pounds. During that time, I also almost died from having a pulmonary embolism and was made to wear what I describe as “granny socks.”

Of course, I remember nothing. Nothing.

What the hell, and how it happened

It was around 5 am on Saturday, March 23, 2014, when it all began.

My wife described it as “like I was cycling in bed.” It woke her up, and she panicked, not knowing what to do. She tried to stop me, raise me, and get a wet towel for my head, and in about 3 to 4 minutes, it stopped.

I was drowsy, semi-awake-with no real understanding of what had just happened, so she let me go back to sleep again, and she, too, returned to her side of the bed-lying there, wondering, “What on earth was that?”

But I insisted I was okay. She later went downstairs to feed the kids. I did not. I’d usually have a shower and come down for coffee, but that didn’t happen. Eventually, she went upstairs to find me in a small pool of blood, naked, having fallen over and hit my head.

911. My brother-in-law and mother-in-law scrambled. Our nanny took the kids downstairs to our playroom. The ambulance arrived, and I was put in it with my wife.

I ended up going to the hospital in Bermuda. They didn’t know what was going on, so I was put on anti-seizure medication, Keppra. Despite it all, I was still texting my wife during that stay. I worked during my stay there (I can look back and still read the emails now, perfectly coherent), but I was on constant anti-seizure medication. Also, during that time, I was constantly seizing. I was booked for an MRI.

My wife arrived on Wednesday because she hadn’t received any texts from me that day. She found me in my hospital bed, not working or awake. I was unconscious.

That was it.

The hospital arranged for an air ambulance and asked my wife if she preferred two hospitals: Lahey or Johns Hopkins. Lahey could have possibly been the same day via air ambulance or Johns Hopkins early the next day, in the morning. Based on our experience, Johns Hopkins was the easy choice. (I had just had an executive medical there a month before all of this.)

So, I was sent off “wrapped like a tortilla” to Johns Hopkins. I was put under a very deep coma en route to allow my brain – frankly – to calm the fuck down.

Looking back, we now know that what I had that morning in March wasn’t just a seizure but a full-on tonic-clonic seizure brought on by something in my immune system attacking my brain, thinking something was wrong with it. As Susannah Cahalan would put it, my brain caught on fire. Autoimmune encephalitis.

Many tests and doctor visits overseas at Johns Hopkins Neurology Department later became “autoimmune encephalitis of unknown origin.” To this day, we have no idea why or what in my body caused it to attack my brain. 

I could have died: a two-thirds chance of death, and I was 42 when it happened.

Comm. Failure

So, a complete “Comm. Failure.”

I was lucky.

My memories of the three months before the episode have been completely wiped from my brain. 

I say three months, but it’s worse. Although I was lucky not to die, autoimmune encephalitis wiped away bits and pieces of personal memories from my brain going back – I don’t know – years. That hurts. I need photos, videos, or just my wife telling me about something we did… with me trying my best to remember. I saw a Janelle Monáe concert, I later found out.

I’m 49 but don’t feel 49 because so much has gone. There are so many things I can’t remember. Going back, I’m not even sure how many years. I keep joking that I still feel 42.

When I visit Johns Hopkins now, I do a MOCA test—the one where you subtract seven from 100, name three animals, and must remember five words. Interestingly, after all my treatments and after going home and returning to Johns Hopkins for the first time (in late 2014?), one of the questions was “Draw a picture of a clock showing 20 after 4.”

I drew my clock, and it showed 20 after 4. Except I had “1” at the top of the dial instead of “12.” My mind was still in a comm. failure state, and whatever drugs they gave me to tackle the autoimmune encephalitis were not working. As an aside, I don’t take autoimmune encephalitis drugs anymore. And yes, I can now count down from 100 by seven fairly easily. (My biggest failure is remembering the actual date when asked!)

Even more Comm. Failure

On top of the autoimmune encephalitis, the incident has left me scarred with temporal lobe partial refractory epilepsy; which I’d describe as mild. I’ve been on anti-seizure medication to manage it. My epilepsy is refractory, which means medically resistant, so it has taken me a while to reach that acceptable level.

Luckily, if I do get any seizures – and I’m not going to pretend I don’t – they tend to be the odd absence seizure or a potential aura, all usually lasting no more than a minute, typically rare and highly predictable. It’s funny – I was once on so many anti-seizure drugs that my pharmacist joked with me that I was some miracle of modern medicine. (“Wow, he can speak in full sentences and walk in a straight line?!”)

I don’t exercise, but that is because I’m on a ketogenic diet and have been for eight years now. It is supposed to help those with my condition (or at least a Modified Atkins Diet). I’m entirely keto-adapted, i.e., in a constant state of ketosis. But it also keeps you… thin. When discussing its impact on and help for those who have epilepsy, I’m a believer.

But epilepsy sucks

I will be frank. I’ve read things on the Internet about epileptic “ecstasy” or “bliss” – something people seem to feel while having a seizure, apparently. I can tell you that I have not experienced ecstasy, and I have not experienced any form of bliss. In my case, I can get an aura, but it is primarily terrifying when I get one because I know it means something is happening or could happen. That is when I’m lucky to have an aura. In other cases, I wake up in a fog, having been told what happened, and then tested (“Who am I?”, “Where are you?”). Did I miss a moment in time? I’ll eventually figure it out myself.

Afterward, I get depressed. Angry. And just very tired.

It is not bliss. Seizures are not bliss. They are genuinely horrifying. It is like you are constantly stalked by something and are always aware of its presence. I am lucky that at least my ‘stalker’ is predictable. Others with this condition get it randomly without warning and in full-on “grand mal” mode. They… collapse at any time, in any place.

At times, I used to describe my feelings as if I were on a seesaw, and at the other end was God-knows-what. Some days, “it will be something that will cause me to rise, and I’ll be at the top of that seesaw, laughing around like a kid.”

In one blog piece, when this process all started, and it was brand new to me:

“But there are other days. Dark, deep down days, where it feels like nothing is at the other end of that seesaw, and you are all alone. And you question everything. My drugs. My diet. My job. My role as a dad and a husband. My role…. even in life. It gets to the point of just wanting time to pass so you can get through it all, and you question… what kind of life am I living if that is all I want? And you truly feel like someone you don’t know, you don’t attach to anymore. Down, deep in that hole, wanting to get out.”

Getting Out

I’ve written other (completely unpublished) blog pieces when I’ve been at the bottom of that seesaw. Where I’ve quoted, “it is indescribable until you experience it.”

So, how do you get out?

Well, you climb.

So, I’ve had therapy, sure. I used to keep a daily journal. I have my wife and my family. My support is now greater than ever.

I’ve had a neat (if you are into digital health and healthtech like I am) implant called an RNS device inserted into the cavity of my brain to monitor any potential seizure activity. I say “neat” because I truly am fascinated by how it works. If I have a seizure, which is mild and practically not even noteworthy, this device will pick it up. Then, it delivers an electrical impulse when it detects to interrupt the seizure activity. My doctors at Johns Hopkins can read that impulse, who can tell when the seizure occurred, where (in the brain, i.e., the left or right), and how long it lasted, etc.

So, other than not being able to drive (and I really shouldn’t), my condition now isn’t something that bothers me. It just requires taking certain drugs and occasionally scanning my brain to see if this RNS device has seen anything. (If it has, I’m always curious, and it does.) 

And it honestly takes courage and self-belief.

I’m almost 50, working, playing, traveling, writing, blogging (trying to, at least), podcasting, and just enjoying whatever I’m doing as much as possible. I’m far less inhibited than I used to be before this (whether that’s because of the drugs or a result of the episode… I have no idea.)

Two caveats: I don’t cook, and I snore for some reason now (apparently.)

The Now

What happened doesn’t define me.

But it serves as a reminder because I was 42, and this just hit me out of the blue. Blam.

You never know, so make the most of whatever you are doing. Life can be short.

So love it.

I appreciate what I’m doing now. But don’t get me wrong—I must remind myself of where I am, and in many ways, I’m lucky. It could have been far worse. Yes, I do forget that sometimes.

Still, I like to think that despite all the adversity I’ve been through… my comm. failure hasn’t, in many ways, been a failure. I want to try to think that, in a way, it has been a success.

Chris Garrod