I have narcolepsy. I’ve referenced it here before, but I generally don’t dwell on it, especially on a blog about following Jesus. Of course, it does sometimes impact the way that I follow Jesus, much like any other disorder does.
For those who aren’t familiar, narcolepsy is a sleep disorder. It’s a hypersomnia, excessive sleep – as opposed to insomnia which is not enough. I spend all day tired. Ok, sometimes if I got a really good rest, I feel pretty good for the first couple of hours of the day. Some other things help a little, like exercise which might give me a boost for an hour or so afterward..
Beyond general limitations on energy which is the main factor, there are other symptoms. Cataplexy is the sudden weakness of muscles. When most people think of narcolepsy, they’re thinking of this: people suddenly collapsing into sleep. I usually have a few minutes warning and don’t necessarily sleep – sitting or laying down quickly is usually sufficient. There’s also sleep paralysis, which is when your brain and eyes wake up but you can’t move anything else. And there is excessive dreaming – falling directly into REM sleep instead of going through a sleep cycle first – and very lucid dreams, the latter much rarer for me than for many.
The big daily consequence is that I simply don’t have enough energy. A month or so ago, we had a Home Church question that urged us to do something extra – I forget the specifics but something relational. That question seriously hurts for me to consider. I work 35 hours a week in a great but tiring job. We have a worship gathering on Sunday morning with one church and a Home Church on Monday nights with another. We volunteer at a nearby non-profit cafe on Wednesday nights – I wash dishes for about 3 hours. My wife Emily has much more energy especially for social situations than I do, which I greatly appreciate, but it’s a regular conversation for me to say that I can’t keep up. Other than some Internet connections like MennoNerds, I don’t really have friends of my own – some of that is just the outcome of being married, but much is me not having the energy. We don’t have kids (yet), but when/if we do, I can’t imagine I’ll have any energy left for anything other than my job, Emily, and kids.
For somebody who believes in a very practical, active faith, I hate this. I feel like a hypocrite when I try to encourage others to do things I don’t have the energy to do myself.
About two years ago, the young adults at West Hamilton Meeting House did a laser tag afternoon. Emily was one of the organizers. Partway through the end of the first game, I felt weak. Early in the second game, I couldn’t stand up. I stumbled my way into a corner, propped up against a wall, where I got shot repeatedly – I had the worst score that round. I needed Emily to help me get to the bathroom and to a car of a friend who offered us a ride home. I felt like I let down Emily and the rest of the group.
I can also think back a birthday party for me. Everyone started a game which required some quick creativity and lots of noise. I just knew I couldn’t do it. I excused myself to wash the dishes. They did a bit of a “come on, don’t ruin the party!” but accepted it after a few minutes. Again, I felt like I let everyone down.
People in our Home Church often babysit for each other’s kids. I never offer to help. I can’t.
Being a part of community can be very hard.
Worship and Disciplines
I can’t do charismatic worship services anymore. Before my narcolepsy, I was energized at the end of a night of lifting my arms and clapping. I loved the spontaneity of it. Now I’m exhausted by the end of the first song I have my hands in the air. There are other reasons why I’ve navigated back toward liturgical worship, but this is among them.
I can’t sit and pray or meditate in a quiet space. I’ll fall asleep within minutes. Some suggest praying while walking, which I can sort of do, but I live in a downtown of a city so I also have to be paying pretty close attention to the streetlights, cars, and other pedestrians. It’s already terrifying enough when I realize that I went automatic – almost like sleep-walking – for half of my walk to work, unable to remember things like crossing the road (fortunately it does seem obeying traffic signals is pretty automatic).
Reading is challenging. I just finished Brad Jersak’s “A More Christlike God.” It was an advance review copy with the condition of reviewing within 30 days. I barely made that deadline. It’s nothing against the book, which was great. If I wanted to really think about it, I’d need at least another month to highlight and take notes. Reading is just one of those activities that allows my brain to shut down within a few minutes. I only read about 4 or 5 books a year, compared to when I was a teenager flying through a 300-page novel in 2 weeks. Note: reading on a tablet helps. Normally the backlight is considered a bad thing, but it usually keeps me awake long enough to finish a chapter.
Like being active in my city and church community, worship and personal disciplines can be hard.