Status Epilepticus is a prolonged seizure.
“Very long seizures are dangerous, and can increase the chance of long term damage or death.”
A long seizure is over five minutes.
Last November, my wife had a convulsive status epilepticus seizure that lasted for over two hours.
We are in our early sixties and have been married for forty-three years. After twenty-eight years of teaching (mostly in elementary school) she retired in May 2024. A couple of years ago (when I retired from preaching) we bought a thirty-four-foot travel trailer and frequently camp at a nearby State Park.
That’s what we were doing in November. The night before we were going to return home, she said she wasn’t feeling good. She went home in the morning and I packed up the camper and came home around noon.
She barely moved out of her recliner all day. She said she thought she was coming down with either the flu or Covid.
The night came.
I was still up at about half past midnight when I heard something strange coming from our bedroom. When I went in she was making strange sounds that I’d never heard her make before. I flipped on the light switch.
Her right hand was making a rapid chopping motion. I asked her what was going on. No response but that strange sound which was something between a cry and a cough. She is not an epileptic and had never had a seizure in her life. I didn’t know what was going on.
Moments later her right leg started making the same motion as her hand. Whatever was happening, it was spreading.
I called 911 and it took the ambulance forty minutes to get to our home (we live fifteen minutes away from the hospital and it was the middle of the night with little traffic in a small southern town). It was another half hour before they loaded her into the ambulance and then another fifteen minutes attending to her in the ambulance before they even headed to the hospital.
Before they left, I looked into the ambulance and by that time she was convulsing horrifically and foaming at the mouth.
Doctors said the seizure likely started a good half hour before I even found her. And it lasted another twenty or so minutes in the ER before getting anti-seizure medication into her to stop it. Add it up. Around one hundred and forty-seven minutes ( including the ride back to the hospital; that’s almost 2.5 hours). Look at the second sentence of this blog above (which is a quote from the Epilepsy Foundation’s website). My wife should have died.
It was a good two hours before I was allowed back into her ER room. She was fully intubated and already on a ventilator. Staff began immediately shoving paperwork in my face concerning end-of-life decisions. In addition to the seizure, she tested positive for a staph infection, a strep infection, and x-rays showed pneumonia. A late-night emergency MRI revealed abnormalities in the frontal lobe of her brain. There was no good news (other than getting the seizure to abate) and I was being prepped for the worst-case scenario.
We spent five days in the Critical Care Unit with her in an induced coma and barely clinging to life. The unit has strict visiting hours (actually half hours) and I wondered why I was permitted to stay as long as I wanted when others were forced to abide by the visiting hours. I found out later it was because she wasn’t expected to live and I was deemed “bedside.”
The cause of the seizure never was pinned down. It ranged from blood pressure to meningitis to brain cancer (today the theory is a perfect storm of infections coupled with the pneumonia was the trigger). On the fourth day, I am ashamed to say that I started thinking about the funeral. It was then that the neurologist walked in. After looking at his charts, he looked up at me and he could see that I had been crying.
“What’s wrong?” he asked. I told him that the hospitalist had come by earlier and said they were leaning towards brain cancer as the cause of the seizure. There was a flicker of anger in his countenance and he gestured to my wife. Making big circles with his hands he said, “All of this is reversible.”
I couldn’t believe my ears. He believed that the abnormalities in the brain were caused by the seizure rather than the cause of the seizure (a subsequent MRI about a month later proved he was right…they had vanished!).
The next day she was taken off the ventilator and the horrible drug propofol. We were sent to a step-down unit for 2 days and finally landed in a regular room for another 5 days. Twelve days of angst, misery, and sorrow…but we both survived.
"I Can Only Imagine"
Now I have to tell you something that might shock you considering that I have been a pastor and preacher since 1986. I prayed a lot during those 12 days, but I cannot recall that I ever asked God to provide a miraculous healing. That wasn’t an intentional decision, but looking back I think I know why I didn’t ask for a miracle.
Unlike many whose confrontation with death is a long, laborious, and painful journey (think cancer, lifelong health issues, or other devastating diagnoses), the seizure was like a near fatal car wreck. We went from not feeling good to barely clinging to life in moments.
My wife was as close to meeting Jesus face to face as you can get without actually doing so. She is a believer and I didn’t feel like I had the right to beg God that Jesus put that meeting on hold for my sake (and our four grown children).
All I remember praying was that God’s presence be with both of us. In the Sermon on the Mount Jesus said,
He causes His sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous (Matthew 5:45).
I figured it was our turn to stand out in the rain. One thing that makes a pastor’s job so difficult is being constantly bombarded with the suffering and misery of others. There is rarely a let-up to it. Even Jesus was affected by it. The shortest verse in the Bible is two words written in response to a friend’s death: Jesus wept (John 11:35).
The rain was falling on us just like it eventually falls on everyone; including God.
Not long after the neurologist left the Critical Care room I pulled up the hymn “Nearer My God” on my phone and laid it next to my wife’s head and pushed the play button. When that finished I chose “It Is Well with My Soul.” The music ministered to me, but there was no response from her. Finally, I chose “I Can Only Imagine” by MercyMe. She immediately started mouthing the lyrics. I was stunned. That seemed to be the turning point back to life.
My wife’s recovery has been amazing. She’s on a lot of meds right now but she’s essentially the same woman now that she was the day before the seizure. The worst we’re having to deal with is that she can’t drive until mid-May (it’s the law in our state…if you have a seizure you can’t drive for six months).
There is only one thing left to cover.
Survivor’s guilt?
This is a sensitive subject. God was (and continues to be) so good to us. But I find myself around a lot of people, who as far as I know, are just as faithful and sincere in their walk with Christ as I and my wife are (perhaps more so). The spiritual rain came on them like it did us. And they didn’t walk out of the hospital and return to what they would consider a normal life.
It’s made me very sensitive to how I testify to “what great things the Lord has done for you, and how He had mercy on you” (Mark 5:19).
It’s like getting to the doctor’s office for your appointment and finding the waiting room jam packed. You check in with the receptionist and sit down in the last remaining empty seat. Five minutes later, you are called to the back. Almost everyone has been waiting longer. As you start walking toward the nurse who called your name, you can see people shaking their heads in frustration and even hear some of them say, “That’s not right!”
What am I supposed to do? Return to my seat refusing the call?
I’m not saying that people are miffed about our good fortune to have God’s will revealed in such a personally positive way for us. But sometimes I can sense the older brother’s frustration with his father as his younger brother is celebrated for returning home. I’m paraphrasing but if you know the parable of the prodigal son (Luke 15:11-32) you know the older brother basically said to his father, “What about me?”
I don’t know why things worked out so well for us but not the same for others. It’s certainly not because we are more important Christians than anyone else.
I do know two things about this episode in life.
First, I will always be mindful when I share our story that there are those listening who were/are standing out in the cold rain just like we were. Shivering and desolate. I won’t make it sound like we deserved the outcome we received because of how faithful we were or how hard I and many others prayed. It was God's decision and I don't know why He went the way He did (but I sure am thankful!).
Second, I will never be sorry for loving or bashful in saying that Romans 8:28 continues being a solid foundation in our lives and that it continues to manifest itself to us in glorious new ways as we continue this life’s journey. Somehow, I know in my soul that even if my wife went to be with Jesus back in November, Romans 8:28 would be soothing my inmost being as much as it is now.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
