“Now I lay me down to sleep.
I pray the Lord my soul to keep.
If I should die before I wake,
I pray to God my soul to take.
If I should live for other days,
I pray the Lord to guide my ways.
Father, unto thee I pray,
Thou hast guarded me all day;
Safe I am while in thy sight,
Safely let me sleep tonight.
Bless my friends, the whole world bless;
Help me to learn helpfulness;
Keep me every in thy sight;
So to all I say good night.”
An extended version of a prayer I said every night as a small child. Now, as a grown adult diagnosed with Epilepsy, I think back on this prayer almost every single night. It is a frequent occurrence that a seizure will attempt to break through in the night. I lie awake in bed, praying to God to see me through. Afraid to turn the lights off sometimes, I think about those who’ve passed away from Epilepsy. A condition called SUDEP (Sudden Unexpected Death In Epilepsy) A part of me is fearful of this happening to me. Another part of me remains steadfast in faith that God will protect me through the night. As I lie awake with the lights on, I stare at the ceiling listening to my breath and my heartbeat, telling myself everything will be alright. Whether or not a seizure attempts to break through, it will all be alright. The times that seizures attempt to break through, I will have turned off the lights to go to sleep. Between 10 and 30 minutes of turning off the lights and settling into sleep, my body becomes rigid yet I remain conscious. An uneasy and nauseated feeling overwhelms my stomach as though I might become sick but I’m unable to move. My closed eyelids flutter like butterfly wings and my arms and legs tremble involuntarily. Yet, I remain conscious for the whole event. Behind my fluttering eyelids, my vision scrambles frantically. Pastel pink, yellow, blue, green and white dots everywhere. Like the 4th Of July fireworks in my eyes. Electricity type bolts dashing in and out between these pastel dots. Almost as if my vision is trying to short circuit but can’t quite shut down. Yet still, I’m conscious for the whole frightening event. Sometimes, I’m rendered helpless to call out to my husband who is just inches from me in bed. Sometimes, I’m able to speak only his name and that’s all he needs to hear to know I’m suffering a seizure. I can’t help but to think during these times, “God help me! Please help me! I’m scared and I don’t want to die! I’ve so many things yet I want to do before you call me home.” Unable to cry on the outside, on the inside I sob as I wait for this nightmare in the dark to end. Typically, episodes like these only tend to last a few minutes. When they’re over, my body lays limp and exhausted from the fight. Often, I turn and silently cry in my pillow if Chris hasn’t been woken by the episode. I cry tears of fear, frustration and even relief to know I made it through. Within 30 seconds following the episode my brain reacts by delivering a migraine from hell. At times, it prevents me from falling back asleep. Other times, it comes and goes within just a few minutes. I lie awake in the middle of the night praying to God to make this my last seizure I must endure this night. I pray for a cure for me and everyone going through this exact same thing. I pray that I never become another person who passes away in the middle of the night because of a seizure. I pray that this sort of thing never happens to me or my loved ones. Also, I pray for the families of those who have had to endure such heartache and loss. As someone who fears for their life almost every night, I could just imagine the heartache they must feel.
I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.” — Psalm 91:2
I hold dear my trust in God that not only will he bring me through the night, he will bring me through it all. All day every day. Even if a seizure comes, he’ll bring me through to another day. Yes of course, I’m only human and I do fear the seizures anyway. However, I know a cure will be found. I have faith, I have hope, I believe with all my heart all 65 million and more of us will be cured one day.