So, back in December, I got sick. Like, hospitalized for 9 days, in an induced coma for 4 sick. I had pneumonia, meningitis, and encephalitis. Apparently I had a seizure that was so long and severe that it took 3 large nurses to physically keep me in place - hence the induced coma.
I felt strange that Friday morning, with shaking hands like severe low blood sugar, but it just wouldn’t stop. I drove to work, against my wife’s recommendation, and the shaking only got worse there. A co-worker came up to ask me how I was feeling, because I just seemed “off” and I couldn’t finish a sentence. Eventually I stammered out that I was taking a sick day. She asked if I was OK to drive and my reply was “I live an hour away, and I have our only car, so I have to drive”. And, off I went.
When I got home, I tried to go to bed, but that wasn’t working with the kids, etc. Finally, my wife convinced me to go to my mom’s house (4 houses away) and have her take me to the ER to get checked out. Clearly to everyone, except me, something was *very* wrong. I drove the 4 houses away, and parked on the street, went inside, and sat on mom’s couch. A few vaguely remembered moments later, I was walking into the garage to her car saying “I think I will let you take me to the ER now”.
At the ER, I tried to check myself in, but by now I couldn’t complete a single sentence, couldn’t remember my phone number, couldn’t say my full name, and couldn’t even operate my phone because my hands were shaking too badly to operate the touch interface.
My mom came into the ER to finish checking me in, and that’s where my memory ends.
Mom says we went back to an examination cubicle thing, where I was sat on the bed waiting for docs to check me out. My shoulders shivered, and I looked at her and said “Wow, that was weird”. After that, the seizure commenced. She said I was making some ungodly groan that could be heard all through the ER, and drew all the attention that it needed to and more.
I have pictures of myself after that seizure, with at least 5 IV lines in me, breathing tubes, EEG lines, etc, all over me. I have no memories of the next 5 days, except some fleeting memories of dreams where I felt the intense need to stretch my arms and legs out straight. I have since wondered if those dreams are actually memories of the seizure, because that’s the position they say I was in, doing “gestures” during the seizure.
When I woke up, the first thing I can remember is the nurse asking me what day I thought it was. It took me what felt like 2 minutes to find the words, and I said “Saturday?” assuming that I’d spent the night. He said “No, Brad, it’s Tuesday.” I was shocked, but felt like a passenger in my body, a stranger along for a ride, looking out the windows of my eyes.
I couldn’t remember my kids at first, but then I did. I remembered my wife right away. I cried easily and often, every little thing would set me off from a drawing that my wife brought in that my son did, to realizing that my brother, sister in-law, and step-dad had all come to visit me from across the country, on no notice, and during Christmas travelling season no less.
Eventually I proved that I could remember my name, write, tell time, and swallow. All things that I had to complete before they’d take the dreaded nasal feeding tube out of my sinuses and let me go home. I don’t remember much of the first week home. I was weak, physically and mentally. It was about the most humbling thing I’ve ever had happen to me, having not my body rebel against me, but my prize, pride, and joy: my brain.
It’s taken months of slow, steady progress to recover from the weirdness of this event. My brain was temporarily - or maybe permanently in some cases - wired wrongly. I found that it presented itself in a lot of ways: insomnia at night, somnomulence during the day (tiredness); attention problems, concentration problems, basically a complete lack of the ability to stay on task; severely short temper, basically my rage became an on/off switch - I was either a teddy bear, or a grizzly bear with rabies, and no in-between (even scarier, I could feel the switch happening, but had zero control over it).
Some of these were side effects of the anti-seizure medications, some of them are known side effects of seizures themselves, and some of them are probably just my brain dealing with an intense electrical storm.
Now, to the point of this long story: Sometimes (often), when I’m driving to work, or sitting on the couch, or laying in bed, I start to think about what happened to me. I start to wonder if I’d know it was happening again, if it did. Every time I get a shiver down my spine, I wonder if it is the start of another seizure. Every time my hands get even slightly shaky, I wonder if I have encephalitis again. Every time I cough, or have a slight bit of phlegm in my throat, I wonder if the pneumonia is coming back.
When that happens, I start to imagine the events in the ER as they were described to me. I feel this maddening, deadening, leg-wobbling fear. The events I don’t remember, play vividly inside my imagination like a horror movie in my mind, and I don’t know how to stop it. It’s always followed by thoughts about how helpless I was, how I became a burden on my wife and family, how close I came to dying (over 40% of people who have this same series of events happen to them end up dying), and how I’m not prepared to leave my wife, kids, mom, brother, sister-in-law, step-dad, or anything else, yet.
That fear turns into some sort of shame/anger spiral, how I need to take better care of myself because I didn’t in December, and it almost wrecked everyone’s life.
I can’t stop the fear, I can’t stop the shame, I can’t stop the anger, and I almost constantly think about all of it…it’s always there, at the back of my thoughts, waiting to jump into my brain and start the movie again.
What do I do now?
I felt strange that Friday morning, with shaking hands like severe low blood sugar, but it just wouldn’t stop. I drove to work, against my wife’s recommendation, and the shaking only got worse there. A co-worker came up to ask me how I was feeling, because I just seemed “off” and I couldn’t finish a sentence. Eventually I stammered out that I was taking a sick day. She asked if I was OK to drive and my reply was “I live an hour away, and I have our only car, so I have to drive”. And, off I went.
When I got home, I tried to go to bed, but that wasn’t working with the kids, etc. Finally, my wife convinced me to go to my mom’s house (4 houses away) and have her take me to the ER to get checked out. Clearly to everyone, except me, something was *very* wrong. I drove the 4 houses away, and parked on the street, went inside, and sat on mom’s couch. A few vaguely remembered moments later, I was walking into the garage to her car saying “I think I will let you take me to the ER now”.
At the ER, I tried to check myself in, but by now I couldn’t complete a single sentence, couldn’t remember my phone number, couldn’t say my full name, and couldn’t even operate my phone because my hands were shaking too badly to operate the touch interface.
My mom came into the ER to finish checking me in, and that’s where my memory ends.
Mom says we went back to an examination cubicle thing, where I was sat on the bed waiting for docs to check me out. My shoulders shivered, and I looked at her and said “Wow, that was weird”. After that, the seizure commenced. She said I was making some ungodly groan that could be heard all through the ER, and drew all the attention that it needed to and more.
I have pictures of myself after that seizure, with at least 5 IV lines in me, breathing tubes, EEG lines, etc, all over me. I have no memories of the next 5 days, except some fleeting memories of dreams where I felt the intense need to stretch my arms and legs out straight. I have since wondered if those dreams are actually memories of the seizure, because that’s the position they say I was in, doing “gestures” during the seizure.
When I woke up, the first thing I can remember is the nurse asking me what day I thought it was. It took me what felt like 2 minutes to find the words, and I said “Saturday?” assuming that I’d spent the night. He said “No, Brad, it’s Tuesday.” I was shocked, but felt like a passenger in my body, a stranger along for a ride, looking out the windows of my eyes.
I couldn’t remember my kids at first, but then I did. I remembered my wife right away. I cried easily and often, every little thing would set me off from a drawing that my wife brought in that my son did, to realizing that my brother, sister in-law, and step-dad had all come to visit me from across the country, on no notice, and during Christmas travelling season no less.
Eventually I proved that I could remember my name, write, tell time, and swallow. All things that I had to complete before they’d take the dreaded nasal feeding tube out of my sinuses and let me go home. I don’t remember much of the first week home. I was weak, physically and mentally. It was about the most humbling thing I’ve ever had happen to me, having not my body rebel against me, but my prize, pride, and joy: my brain.
It’s taken months of slow, steady progress to recover from the weirdness of this event. My brain was temporarily - or maybe permanently in some cases - wired wrongly. I found that it presented itself in a lot of ways: insomnia at night, somnomulence during the day (tiredness); attention problems, concentration problems, basically a complete lack of the ability to stay on task; severely short temper, basically my rage became an on/off switch - I was either a teddy bear, or a grizzly bear with rabies, and no in-between (even scarier, I could feel the switch happening, but had zero control over it).
Some of these were side effects of the anti-seizure medications, some of them are known side effects of seizures themselves, and some of them are probably just my brain dealing with an intense electrical storm.
Now, to the point of this long story: Sometimes (often), when I’m driving to work, or sitting on the couch, or laying in bed, I start to think about what happened to me. I start to wonder if I’d know it was happening again, if it did. Every time I get a shiver down my spine, I wonder if it is the start of another seizure. Every time my hands get even slightly shaky, I wonder if I have encephalitis again. Every time I cough, or have a slight bit of phlegm in my throat, I wonder if the pneumonia is coming back.
When that happens, I start to imagine the events in the ER as they were described to me. I feel this maddening, deadening, leg-wobbling fear. The events I don’t remember, play vividly inside my imagination like a horror movie in my mind, and I don’t know how to stop it. It’s always followed by thoughts about how helpless I was, how I became a burden on my wife and family, how close I came to dying (over 40% of people who have this same series of events happen to them end up dying), and how I’m not prepared to leave my wife, kids, mom, brother, sister-in-law, step-dad, or anything else, yet.
That fear turns into some sort of shame/anger spiral, how I need to take better care of myself because I didn’t in December, and it almost wrecked everyone’s life.
I can’t stop the fear, I can’t stop the shame, I can’t stop the anger, and I almost constantly think about all of it…it’s always there, at the back of my thoughts, waiting to jump into my brain and start the movie again.
What do I do now?
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