I hate to admit it, but we have watched several singing competition shows in our house – American Idol (first season only), The Voice, The Sing-Off, and we even tried Duets. Maybe I should not admit this in the blogosphere, but I have enjoyed most of the episodes, even with the knowledge that this causes my man card to be called into question. Something I do struggle with on these shows though is Adele fatigue: How many times can I really hear Rolling in the Deep sung in a fresh way, by a singer who “made it their own” while “staying true to the original artist’s vision” for the song (I swear I am going somewhere other than pop culture with this, so just hang on three more sentences)? At some point, I get tired of hearing the same songs karaoked over and over. I wonder at times if people feel the same way about my family when it comes to seizures. Do they feel seizure fatigue? Let me explain. Every time someone asks me how I am doing, or how my family is, I have to go through a mental checklist:
1) Does this person know that Cynthia has epilepsy?
2) Are they aware of my recent seizures?
3) Was there a knowing inflection in their voice when they asked how I was doing?
4) Was their eyebrow raised in a concerned way and/or a slight tilt of the head to express compassion?
5) Do I believe that this person has the time or interest in a somewhat honest answer?
The truth is that the epilepsy in our family is an ongoing struggle that impacts every area of the lives of every person here in our house, as well as our extended family. Socially, my wife and I worry whether it’s appropriate to hang out with someone with my seizures fairly uncontrolled, as some people freak out over epilepsy. Since I am not driving, it puts a strain on Barbara, my oldest son and other local family members to ensure that the family gets everywhere they need to get on time. Every once in a while, I still run into a person who sincerely suggests or insinuates I am demon-possessed and should just love Jesus a bit more to get rid of my seizures – that is always awesome. Medically, the regular shift in drugs for Cynthia and I are being monitored by multiple people inside and outside our home to make sure we don’t have a dramatic increase in seizures, or break out in rashes, or have psychotic episodes, or get depressed or hyperactive.
As a result, a simple question can feel like a landmine, because I just assume most people don’t really want an answer on that level. Really, they are probably looking for the classic one-sentence answer, “Doing great – how about you?” It’s tough to say that, because we aren’t doing great. Some days are good, some days are bad, but none are really great yet because the specter of epilepsy is hanging over our heads in a way we are still unaccustomed to. In time, I am sure we will have days that are great, but we just are not there yet. Still, I worry about people feeling seizure fatigue if I give them an honest answer every time they ask, because then maybe they will stop asking. We all know that person who is down all the time:
I don’t want to be Dr. Doom. But I don’t want to lie either. The Bible is pretty clear about the value of honesty in community, and I am a HUGE proponent of being real in relationships with one another. Yet I really feel stuck. Readers, whether you have epilepsy or not, I am sure that all of you have gone through seasons where you just sort of feel down in the dumps most days. How have you balanced being honest with preventing people from feeling fatigue from being around you?
For the record… I know I haven’t been too good at asking how you and the family are lately except for the occasional two sentence text. But I really do care a whole heap, you and the family really are in my prayers, and goshdarnit I DO expect an honest answer when I ask. (That’s not to say that I don’t think your answers to me are honest, because I do. But I’m just sayin’ in case you ever question whether or not they should be.)
I hope you start having those GREAT days soon.
We’ve both been going through our own hailstorms right now, with probably some of the more painful seasons we have had to experience in our lives because of uncertainty and fear. I say that only to be able to then say that you have never given me reason to doubt that you care like any surrogate adopted sister-ish type figure would 🙂
It’s funny, because I have had a whole heap of texts and emails from dear friends like you, telling me that they care and want to know what is really going on. That’s very encouraging and hopeful, and unexpected too. My wife and I so often feel alone in this journey, and it is good to be reminded that is a lie.
This post was more about the acquaintance who happens to be aware of my epilepsy and/or my daughter’s epilepsy, who casually asks how the family is doing. They might even say, “How’s Cynthia doing with the whole seizure thing,” like it’s a head cold that goes away or something. Someday, I swear I am going to answer, “Oh, she took NyQuil for two days and it knocked that sucker right out!” 🙂
This sounds very familiar. I have started telling people that I am fine as I already feel they don’t really want to know how I am, I was only diagnosed 3 months ago. 🙁
I really struggle with this too. I want to be an honest person but it is exhausting for me to explain every time. I’ve only known of my epilepsy for a few months myself.
CHris, people have really said this??? How frustrating “once in a while, I still run into a person who sincerely suggests or insinuates I am demon-possessed and should just love Jesus a bit more to get rid of my seizures”
Between me and my daughter, I get this about 5 times a year. Mostly it makes me sad and sick, Christa. People forget about the fact that I am a human being with a condition, not a statistic.
Chris, Lisa and I got this in a big way this year. The, uh, “are-you-still-dealing-with-that-it’s-kind-of-too-much-call-me-when-it’s-over” vibe. Yikes! The implication being that our faith was lacking (it way have been), or that there was unconfessed sin, or because there were science fiction, fantasy, Harry Potter, and Stephen King books in our home we had somehow opened a doorway to the occult.
You haven’t really lived until you’ve had sincere, well-meaning brothers and sisters stage an intervention because you like the Harry Potter books. (I wish I were making this up). Which is my way of saying I can’t imagine all the well-meaning, but stupid, hurtful, poorly thought out things you hear…
The (American, in particular) church is altogether too good at shooting its wounded.
Btw, is there such a thing as Taylor Swift fatigue? Because I think I’m suffering from it. Every time we go for a ride, my daughter asks for Swift. Ugh… 😉
I hear you Chad. This is really the main thrust of the book I am writing, trying to figure out how to rescue hope when those we love and trust sorta don’t know how to help us very well. Dude, it hurts so much
I know, man. I know.