1,000 Questions and NO Good Answers
By Brenda Evans
Helping others can be as simple as listening, participating in an email exchange (as Brenda Evans shares in this article), or quietly being present to offer support. The point is anyone can do these
small things to make a real impact upon the lives of friends and loved ones.
By email over several days during the COVID-19 pandemic, my friend Dee Smith told me the story of her 12-year struggle with left temporal lobe epilepsy. Here is a shortened version of our conversations.
Dee—Thursday, 3:45 pm: I read your article in ONE Magazine about being a participant in life, not just a passenger. I’ve been looking for that word participant since June 9, 2009. Thanks for making my day and reminding me of Isaiah 46:3-4.
Brenda—5:19 pm: Glad you read it. Remind me about June 9, 2009.
Dee—7:58 pm: That’s the day they took my driver’s license, so I walked two miles to work. I was 43. I have funny stories: dog bites and large trucks splashing rainwater; how people stop and offer you a ride, and how you cry but tell them to go on.
Brenda—Friday, 12:05 pm: Wow, Dee! I knew it had been years since you have driven, but I didn’t realize it had been that long. Wondering: do you write about all this? You draw and paint, have creative bones, and big gray matter. Are words your thing, too?
Dee—Monday, 4:22 pm: I used to write, but now I can’t make sense like I used to. I do record the dates of every MRI, CT, hospital stay, new medicine and when I went on and off it. I’m a little obsessive about that. I can hand a new doctor three pieces of paper that tell him every procedure I ever had. I keep planners with seizure times, so doctors can see the changing patterns. In 2009, I didn’t have seizures very often and didn’t feel them until someone looked at me funny. Then I knew I wasn’t making sense. Later, I went up to 300 seizures a year, and now I am over the 700 mark. That doesn’t count what I call “flitters” that are small and continue for a day.
Brenda—Tuesday, 3:52 pm: Do you get a warning a seizure is coming?
Dee—Wednesday, 1:32 pm: I get a song. I’ve had two seizures this morning. At 9:30 I heard the song come into my mind. I never remember the song. It’s just there. I started long, slow breaths to calm down. Our brain normally has 80 electrical pulses per second, and during a seizure, the pulses can climb to 500. It felt like my mind was wired to an electric switch, like a 50-pound weight was sitting on my chest, like I had worked all day and desperately needed rest.
David [Dee’s husband] asked if we should take a walk. We started, but I felt like I couldn’t take the next step. When we talked, I said things that didn’t make sense. I couldn’t think of what a vehicle was called or plants. When we met people, I tried to smile to get the haunted look off my face.
Back home, I took a shower, and the song started again. My body was overwhelmed, like someone pushing on my face, eyes red, mind rolling. That was the second one today. Today is a day on my seizure calendar that I will likely record four to six.
What could I say? The next day I emailed Dee with a “condolence” of sorts, something like a glib, “I’m so sorry you are going through all this, Dee. I love you and am praying for you.” I say “glib” not because my words were insincere. I meant them. But they felt shallow and, most of all, unhelpful. What do you say to those walking through times like Dee’s because of chronic illness, death of a spouse or child, mental illness, divorce, a family suicide, wayward children or spouse?
Do shallow words hurt? Is silence better? I did know for
certain Dee did not need a “sermon” from me. This was not a “teaching moment.” What could I teach Dee anyway? So, I said what I felt: I’m sorry. I love you. I’m praying for you.
Brenda—Monday, 10:30 am: If I pry too much, just say so, and I’ll zip my lip—or stop my fingers from typing. When you write, your words are powerful. They make really good sense. Have you thought about writing your story? You have things to say. See, I’m prying. But this morning, I thought of you when I saw the Shoe cartoon in the newspaper. It was both funny and serious—about bringing things to the table, not just our elbows. You’ve got things to bring to the table.
Dee—Monday, 4:33 pm: I looked up Shoe, and yes, most of the time it’s not just my elbows on the table. But I’m not like I used to be. I used to be one smart cookie. Now I’m the crumbs. In high school, I watched my grades, so I would graduate third in my class and not have to give a speech like numbers one and two did. Now, one minute I laugh, the next I cry. I’ve always hated to cry in front of someone. Attached are a few things I wrote.
Brenda—Tuesday, 11:06 am: I read your email and attachment last night. I cried but laughed, too. You’re a good writer. You’ve got the bones of a long story here. I say, “You go for it, girl!”
Dee had started. That was good and I said so. I encouraged her to flesh out those bones. I gave her a few examples of where she might insert more detail, explanation, dialogue. I didn’t hear from Dee for several days and worried I had pushed too much. Then I received the following email.
Dee—Saturday, 4:17 pm: Today, I sat outside while David was working in the yard. I just kept writing down things. How about in the next couple of days I write on some things you mentioned, open them up? I am going “willy-nilly” with all this. Today made me think of good and bad things I haven’t thought about in forever. If I write a book, forgive me. I ramble, so at some point, you may need to tell me to zip it!
I didn’t ask Dee to zip it. In less than two weeks, she sent seven more attachments with 6,000 words of her story: praying in childhood though her family never went to church; her marriage; her father’s suicide; her salvation, baptism, and teaching Sunday School with her husband David; her jobs; her mother’s remarriage; her sister and cousins; her questions and struggles with left temporal lobe epilepsy for more than 11 years. Dee’s stories were harrowing, inspiring, and funny all at once.
She shared Psalm 139: 23-24, the “search me, O God” verses and Psalm 27:14, “wait on the Lord; be strong...wait,” and nine other Bible passages. Sometimes, she prayed for guidance and help, sometimes she didn’t. She clung to Revelation 21:4: “God shall wipe away all tears…and there shall be no more crying.”
Dee explained she has been on ten different medications, had four EEGs, three MRIs, two CTs, a PET, a Ictal Spect, a Wada test that tore her carotid artery, two psych exams, and one left temporal lobe surgery at Vanderbilt, which gave her no seizure relief.
She told funny stories about her, her sister, a gown, and a hospital IV pole. She described an awful skin disorder caused by medication. She was told twice if she only believed, God would heal her.
Along the way, Dee has asked 1,000 questions with no good answers, but she is strong, and she waits. What I can do is be her friend and pray. With her last attachment, Dee added these 34 words:
Dee—Monday, 3:24 pm: Well, that is my story, and I’m sticking to it! LOL. With the brain change, I’m totally different now. My perky, quirky self has gone away. How I miss that silly girl!
About the Writer: Brenda Evans lives in Ashland, Kentucky.
She can be reached at firstname.lastname@example.org.