I have a seizure disorder. I found out a few weeks ago that my seizures are definitely not neurological in origin. I have something called psychogenic nonepileptic seizures (PNES for short). This means my body is responding to some type of trauma in the present or past by mimicking the physical appearance of a seizure, though my brain does not appear to be in a seizure.
On a typical day, I have anywhere between two and four seizures. Sometimes I stand completely still for up to a minute, and nothing else happens. Other times, my body goes limp and I fall to the ground. I am 6’7”, so me falling is quite the event. Every once in a while I go a full day without a seizure, but it’s uncommon. Sometimes I have five or six seizures.
But never thirteen seizures. Not until November 15, 2017.
I survived, and so did my family. My son’s ankle was the only injury other than me–I landed on him with one of my seizures. My back hurt, my head hurt, my neck hurt, my thighs hurt, my everything hurt. But the biggest injury was not physical at all. No, the worst wound was to my soul.
I’ve been operating under the illusion that I understand PNES, and that I can somehow control it. As a family, we came to accept that a few seizures a day is our normal. Even though it’s really Perfectly Abnormal, it’s typical for us. There was even a stilted peace because we knew what to expect.
All bets were off, all evidence was thrown out, it was a whole new ballgame. Pick your cheesy metaphor. What it really was was a disaster. I’m sure I wasn’t the only one trying to keep my cool through this hellish day, but Wednesday impacted me in a unique way.
I lost control of my own body. Repeatedly. For six straight hours. I still don’t really remember much of that day, and I’m sure I will never recover those memories. PNES wiped most of that day from my mind indefinitely.
This is more than memory loss though. The false front of control I thought I had over my chronic health condition was removed.
Who in the world did I think I was to think I could manage my condition? I had it all wrong. My chronic illness was my boss. PNES told me I couldn’t drive. PNES smothered my memories behind confusion. PNES caused my wife to yell at me for performing the dangerous feat of standing. PNES reduced me to a mess of raw nerves. I was afraid to move, afraid to breathe, afraid to even think about anything at all.
PNES told me it managed me, and for a moment I believed this myth. I bought the lie that everything was out of control, and that I could do absolutely nothing.
For the first time in a long time, I felt helpless. I was at the mercy of my mental health condition. I could almost see hope draining out of my being. The thoughts that flew through my head were gently but assuredly guiding into an abyss of darkness. I felt a deep lethargy overtake me, and I settled into a new truth: I was a victim of unchanging circumstances. Why bother?
I’d love to tell you that I opened my Bible and read a verse, only to find hope rush back into my soul. I wish I could say my pastor prayed for me and the Holy Spirit whisked me away from my dark abode. I have friends who experience this type of resolution to their dark moments, and I’m jealous. This is not my path.
Instead, my path is an arduous journey back up the abyss of despair, where I battle for every step toward a healthy soul. I’m not out of the canyon yet, but I am pushing forward. I am making progress, and I’ve realized there are three tools I’m carrying that allow me to keep going.
I have several statements posted on the wall in my office. These are positive reinforcements of truths that I so often forget. One example is “You are more than your illness”. I look at these statements throughout my day, but I do more than passively review them. I verbally expound upon their meaning. I force myself to hear the truth. This gives me ammunition against the voice of PNES that is still talking, still threatening, still promising pain and uselessness.
The root of all truth is the Word of God. I meditate on several Bible verses, which act as a beacon of hope for my weary soul. There’s no miraculous response when I focus on God’s Word, but I do find salve for my busted heart.
- Romans 8:1 – There is therefore no condemnation for those who are in Christ Jesus.
- Isaiah 40:31 – Those that wait upon the Lord shall renew their strength, they shall mount up on wings as eagles; they shall run and not be weary; they shall walk and not faint.
- Romans 8:31 – If God is for us, who can be against us?
I allow these truths to wash over my being. I do not stand condemned. The Lord will give me strength. God is on my side, and He is the biggest and the strongest. I gain confidence to push forward through the deep-darks, and not give up.
If I’m honest, I hate that transparency is part of the path back to a healthy soul. I’d rather hide in plain sight with a fake smile and act like I’m great. But this doesn’t work, and it only multiplies the loneliness.
If I instead boldly step forward in trusted friendships and declare that I’m a mess, the lies lose power. Darkness cannot stand against light, and lies cannot stand against truth. And I have shoulders to lean upon, hands to lift me up when I fall, and ears to listen to my sorrow. I am no longer alone
So here I stand, about a week removed from the worst seizure day of my life. I am bruised. I am a mess. I am still in that dark canyon of hopelessness. Jesus didn’t heal me or take me out of the abyss. But I am moving forward. The power of this myth has been broken in my life.