With my tongue swollen from being chewed to pieces, I tried to ask the neurologist a few more questions. But the time for inquiry was over, the truth was laid bare; the ugly scary monster of a truth was placed in front of me and there wasn’t a thing I could do to change it. It was simply the hand that I had been dealt.
I started having strange episodes as a teenager; a brief feeling of déjà vu followed by tremendous confusion, racing heart rate and sweaty palms. I knew that something was wrong but nobody seemed equipped to help me. I visited a doctor who diagnosed me with panic attacks. I researched that diagnosis but there were limited overlaps between what I was experiencing and what a panic attack was said to be like. So I moved on, thinking that the doctor must know best.
In young adulthood and through my first few pregnancies this mysterious part of me got worse and more frequent. I started waking in the night with hallucinations so real that I would dispute my husband because he couldn’t see what was clearly real to me. At first these episodes and hallucinations were far apart and then they got closer together. Eventually I was repeatedly assaulted nearly every night. I didn’t know what to do or where to turn. I discussed it with another doctor when I was pregnant with our second child, but again I was given no conclusive diagnosis, just the idea that perhaps stress was giving me a whirl about.
So I lived with it. I prayed through it. I thought about it, wondered about it, hated it, feared it, and relented to it until one September evening, just a few days before our daughter’s second birthday when I woke up in the back on an ambulance. The blonde-mustached paramedic explained to me that I had had a tonic clonic seizure (formally known as grand mal) and that we were on our way to the hospital. After my in-laws arrived to care for our still-sleeping children, my husband met us at the hospital and informed me of the events that had led to this trip to the ER.
He said that as I fell asleep in our bed at home, I awoke with the classic hallucination that he had witnessed many times before. But instead of eventually waking up as was standard, I suddenly spun to my left, and then collapsed into a full-on seizure. Since my husband has some medical training, he knew that nothing much could be done until I stopped seizing. Which I did, but also stopped breathing at the same time. With a quick “Oh S#%*!” he moved my limp body from the bed to the floor where he was about to administer CPR. But before he began, I started to seize again. He called 911. He changed my unconscious body from a plain sleeping t-shirt into something that he thought I would find suitable knowing that the paramedics would see me and then he eventually helped them move me from our bedroom to the gurney that took me out to the ambulance.
At the ER they took my blood to check for pregnancy (which I wasn’t) and a CAT scan to check for a brain tumor (which there wasn’t). Meanwhile my husband called my parents and kept them informed all along of what was happening. I was in a dazed gray cloud the whole time. My brain had just suffered a hurricane and it takes quite a lot of work to reboot from such a trauma. But as I came to and started to focus on what was happening, I found myself putting together years worth of puzzle pieces that all led to this moment. Fifteen years of misdiagnosed, untreated epilepsy.
The next few months were a whirlwind. So many appointments and equally as many tears. Flat out denial to conclusively knowing that this is what it had been all along. I refused to be medicated on my notion that I was perfectly healthy which led to another tonic clonic seizure and one final kick in the rear-end into the land of the disabled. Knowing that I had to accept the hand that I had been dealt, I tried my best to move forward into a new life. But one question rung loud and clear and I was unable to keep it quiet: what if I passed this onto our children?
I made a deal with God. The one and only deal I’ve ever made. I’ll post the conclusion of this life transforming era tomorrow.