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?