I am battling self-pity right now, and it is NOT a flattering accessory. I am trying to fight the good fight, hoping to stay strong in the Lord and in the strength of His might. Because in the strength of my own might, I am falling apart. How thankful I am for knowing the Lord, and the peace that truly passes understanding.
Sometimes I want to write about what it’s like when Ben has seizures. But I also want to preserve his reputation. All I can say is that he falls. Often. Sometimes he breaks things. Frequently he gets bloody. The cluster of seizures can last for days. He generally appears confused and slurs his speech so it might appear that he is drunk. One time when I took him into the hospital, the nurse at the admitting office asked, “Can you tell me what day it is?” In typical Ben fashion, he looked her right in the eye and said clearly, “I could. If I knew.” The nurse laughed and wrote “Patient is disoriented. Funny, but disoriented.”
Sometimes Ben’s confusion and fear is absolutely overwhelming. Tonight at 8pm he came outside and was extremely agitated and confused. He kept asking me if the kids were in school, and he wasn’t satisfied until I finally said, “yes, they’re in school now.” Even though it was 8 at night and school has been out for about 2 weeks.
The seizures are heartbreaking for me because I know that Ben’s mind will return to normal once the cluster ends…only I don’t know when that will be.
“How do people know what to filter out and what to leave in? Maybe we’re permeable, and insanity is the loss of that membrane; everything floods in and out, uncontrolled.” I can’t think of a more eloquent way to describe Ben’s seizures than that quote from a book I read while Ben was in the hospital, Repeat After Me by Rachel DeWoskin.
I am torn between wanting to care for my husband, even if he appears belligerent, irrational and fearful, and wanting to envelop my children and shield them from their father. I never know what is more important…for me to stay with the kids and calm them down, or for me to sit with Ben and help him as he battles the disintegration of his own mind.
It’s impossible to reason with someone whose mind is not working properly. There is a section in John Knowles heartbreaking (and godless) book “A Separate Peace” where one of the characters enlists to fight in the second world war. The character, “Leper” Lepellier, receives a Section Eight discharge, which he describes to his friend Gene as “for the nuts in the service, the psychos, the Funny Farm candidates.” Leper goes on to describe some of the hallucinations he experienced while he was in the army. And then he says, “”I yelled louder and louder to make sure everyone within reach of my voice would hear — you can see there wasn’t anything crazy in the way I was thinking, can’t you, I had a good reason for everything I did, didn’t I…” Leper goes on to describe some of the horrible things he imagined in the army, and then he concludes by saying, “You can see there’s logic in that.”
I often feel like that’s what Ben’s seizures are like. For Ben, there is the utmost logic in everything he is experiencing and doing. For those of us close to him, it can feel like we’re losing him piece by piece.
In her book “Holding on to Hope,” Nancy Guthrie recounts losing her baby to a rare genetic disorder, She writes: “The day after we buried Hope, my husband said to me, “you know, I think we expected our faith to make this hurt less, but it doesn’t. Our faith gave us an incredible amount of strength and encouragement while we had Hope, and we are comforted by the knowledge that she is in heaven. Our faith keeps us from being swallowed by despair. But I don’t think it makes our loss hurt any less.”
My faith is keeping me from being swallowed by despair. But it doesn’t make it hurt any less.