A little background for those of you who don’t know: I suffer from PNES (psychogenic non epileptic seizures). They are also known as pseudo-seizures and non epileptic events (NEE). It’s an uncomfortable topic because these seizures are caused by stress and overstimulation, not by epileptic brain activity. This leads people to believe that they are fake or not real.
That’s not true.
If you want to know more about them, just visit the links above. So, going back to my seizure this morning…
I had a terrible nightmare, the kind that feels so real and terrifies your soul. I woke up and reached for my phone. My husband Matt was already at work, but I wanted to text him about the dream so he could comfort me, tell me it’s not real, say everything’s okay. But as I was typing the message, I felt the all-too-familiar sensation overtaking my body.
It starts in my hands and forearms. They tingle and contract. My hands form 90 degree angles with my wrists and my fingers curl. I was starting to lose control of my body. Matt’s text message said, “Are you okay?” Before I lost the use of my hands, I managed to type “No.” I only got the first three letters of “seizure” out. I’ve never been so grateful for autocorrect before. I hit send. He said he was coming home.
Then it started.
Every muscle of my body tensed up. At first glance, you’d think I was possessed. My eyes roll back in my head. My jaw locks. Tears stream out of my eyes. My tongue lolls from side to side. My toes curl and my knees bend into my chest. I’m completely conscious and aware, but I’m unable to speak.
What made it so much worse is that I was alone. Matt is usually with me when I have seizures, but here I was, trembling in the dark with my daughter asleep in the next room. The last thing I wanted to do was have a panic attack while having a seizure. So, I tried to do what Matt does for me…
"Everything’s okay," I thought. "The nightmare is over. No one’s hurting you. This is going to be over soon. Just stay positive."
And then, I started praying.
"Keep me safe. Help me. I don’t want to get hurt. Keep Lilnor asleep so she doesn’t get scared. Just help me. Please, help me. I’m so scared."
The next thing I knew, I could hear Matt’s voice…it was so confusing and I still had no control over my body.
"Baby? Are you there? Can you answer me?"
Somehow, my phone answered Matt’s call while I was in mid-seizure. I couldn’t talk. I could only make tiny guttural noises. I just moaned in response. He said he was hurrying and that he’d be home soon. He had to get off the phone so he could get out as quick as possible. I held onto the comfort that I wouldn’t be alone much longer and rode out the rest of my seizure as best I could.
The convulsions lasted a solid twenty minutes. By the time Matt called me back on the road, I was mildly catatonic, but had enough control to at least answer his call and listen to him coach my breathing. The closer he got to home, the more I regained my body and my speech.
Why am I telling you this?
I asked for help and I got it. I wasn’t able to answer the phone, but it answered Matt’s call anyway. My prayer was answered.
Positive thinking made a difference. I thought to myself the same things that I know Matt would say to me in the same situation. It kept me from panicking.
Stress can do awful things. Think about it; stress can propel my body into a defenseless state for over half an hour. That’s scary.
Psychogenic Non Epileptic Seizures are REAL. I’m telling you this story in case you know someone who experiences similar things. I’m telling you in case you happen to hear about something like this and that person feels alone. They’re not.
Take your stress levels seriously. You might not have a seizure, but it can do other things to you that are just as bad if not worse. Feel free to get in touch with me if you or someone you know struggles with PNES.
There’s a fellow named Paul who wrote a good chunk of the New Testament. He’s fascinating. He’s constantly going, traveling all over the ancient world, moving among Jews and Greeks and Romans and just about everybody else, constantly finding new and fresh ways to talk about the reconciliation…
"I recently did an interview with a magazine and partway through the interviewer said that it was clear that I had grown in my thinking and understanding in the years I’ve been a pastor. I asked her why she said that. She said It’s unusual. I laughed out loud. It’s unusual for a spiritual leader to grow? She said Yes, it’s not something we usually see in spiritual leaders.”
“My friend Adam Serwer once made the astute observation that most white people “can only relate to racial discrimination in the abstract. What white people can relate to is the fear of being unjustly accused of racism.” The lesson translates to cases of sexual assault and harassment. Those of us who have been forced to personally cope with powerful men behaving badly are certain that the accusers in these situations are worth listening to. “These are not stories we tell for fun, attention or revenge,” tweeted Lena Dunham. There are many women like us working in media, but we’re outnumbered — or definitely outranked — by men who are inclined to relate to the experience of being accused.”—
1. Do not kill yourself. Killing yourself is very messy and your mother will cry over you. It is not beautiful or brave, and even if it was, you will not be around to see that.
2. Washing your hair is going to be a chore. But you should do it anyway. Because you will feel better about yourself.
3. Get up late. Have a lay in. Sleep past your alarm. You have a very long life ahead of you and for now you should appreciate the cold side of your pillow.
4. He is going to break your heart but he’s just another male human who finds it hard to deal with Mondays, too. So in a month you’ll wake up and you won’t even remember that little scar on his knuckle you kissed.
5. Don’t spend hours looking up what your name means on google. Your name is your name and you should go out there and do heroic and good deeds and give your name your own meaning.
6. Don’t fight your demons. Your demons are here to teach you lessons. Sit down with your demons and have a drink and a chat and learn their names and talk about the burns on their fingers and scratches on their ankles. Some of them are very nice.
7. Music is good for your soul. Rap music will energise you and boost your ego and pop music will cheer you up. Indie music will make you think and emotional songs will make you cry and think about that boy again. It’s healthy.
8. Victim complexes are not attractive. Boys and girls will not date you because you are sad. They are not going to date you and kiss your aching bones and cure you of your dragging depression. Wake up. Take a bath. Do your hair. Be attractive.
9. Sadness is not poetic. Depression is not beautiful. Laying in bed all day and eating too much is lazy and disgusting and it is not tragic or pretty. Get up. Go outside. Let the sun warm your bones. Live.
10. If it makes you happy, buy twenty of it. Dedicate your life to it. Print it on tv shirts and collect things and draw art of it. Do not care what people think. They are the unhappy people you need to avoid. The abuse they will hurl at you is painless compared to how sad they are. Pity them. Remain happy.
11. You are allowed to he angry. But the world is not working against you. The flowers do not bloom for you and when your mother shouts ask her if she is okay instead of thinking she hates you. She never will. The world walks beside you and is silent. It does not trip you up or carry you.
12. Day and night cycles are natural. Humans only sleep at night because we used to avoid predators in the dark because of our poor eyesight. Stay awake until 5am watching bad reality shows. Wake up at 7pm and have breakfast.
13. Eat when you are hungry. Being bored does not constitute a chocolate bar. Sleep with you are tired. Do not mindlessly obey the sleep at night rule. If you are not tired, do not sleep.