The Complexity of Cataplexy

What is cataplexy? That is a question I hear all the time. I have heard it from doctors, paramedics, and nurses who are attending to my medical needs. I hear it from family, friends, and new acquaintances. The truth is, there's no easy answer. The best way that I can describe it is that it is an aspect of the sleep disorder narcolepsy, which affects about 30% of naroleptics by causing sudden loss of muscle tone, often in response to strong emotions, exercise, or fatigue. During a cataplexy attack, the sufferer may appear to be unconscious or asleep, but in fact is completely aware of his surroundings, although unable to respond phyically due to the "paralysis" of the muscles. Okay...so now you know what it is, but how does it affect a person's everyday life? That's really a tough question because it really affects everything. But let me give you a recent example in my life.

We recently started attending a new church, largely because of the difficulties I have with my narcolepsy. Our new church is just a few miles from our home, making it easier for me to make it to services. However, any time I have to be awakened before my body is ready to wake up naturally, almost certainly will result in a cataplexy attack or even multiple attacks throughout the rest of the day. It takes my husband several minutes to get me awake enough to take a stimulant medication that will give me the energy to actualy get out of bed and get ready. I lie in bed and just wait for the drug to "kick in," because I've learned the hard way that if I get up too soon, I'll end up having an attack while I'm brushing my teeth or going to the bathroom. One time I fell backwards while brushing my teeth and hit my neck and back on the bathtub. Needless to say, I try to avoid a repeat of that catastrophe.

Even with all that, we've found that if I go to Sunday School and the main worship service afterward, it is almost inevitable that I will have an attack by the end of the service. The first week I attended, our class got out late, so the only seat we could find for the worship service was on the second row, right in front of the pulpit. About 20 minutes before the pastor finished speaking, I started to feel an attack coming on. I didn't want to walk out because we were right in front, and I didn't know how well I'd be able to walk at that point. I didn't want to make a big scene, so I just prayed that it would hold off. As soon as he started to pray, we got out of there and just barely made it to the car before the attack hit me. But the next week, it happened right in the middle of his sermon. Although we were sitting a little farther back, I was still really upset that it happened because I felt like everyone in the choir and the pastor probably thought I just fell asleep during the service. My husband says it only feels like that to me and that most people probably didn't even notice. (But then he told me yesterday that I started to breathe really loud...almost like I was snoring. Yeah. That's really inconspicuous).

Often when I start to come out of the attack, my muscles gradually begin to work again, usually ending with my legs. Sometimes it's a long time before I can actually stand up and walk. So, of course, we were the very last people to leave the auditorium. And even though we park in a handicapped space, it's still quite a long way to walk from the pew out to the car. I do have a motorized wheelchair, but I hate to use it at church since we're mostly sitting down anyway. I use it when we go to the mall or grocery shopping or something where there's a lot of walking, but if I can avoid using it, I try to do that. But before or after an attack, I definitely need assistance to walk even a short distance. I try to find things like walls and door posts I can hold on to, but my husband normally ends up helping me by letting me lean on him. I always hate that part because I feel like an old lady or something, and of course I want to feel and look normal.

By the time I get home from church I'm pretty much done for the day. The whole ordeal of getting ready, going to Sunday School, going to the service, having the attack, getting back to the car and coming home basically takes it out of me. We usually end up eating fast food for lunch and then I fall asleep on the couch by mid-afternoon. I sleep for hours. When I wake up it's almost dinner time, which is another prime time of day for me to have cataplexy. So that pretty much guarantees I won't make it to an evening service. I used to feel really guilty about that, mostly because people would make comments about how I should be there and how they know 10 other people who have it worse than me that still make it to church for every single service. But I know my limits and what I can and cannot handle. And more importantly, God knows my heart. He knows how hard it is for me to be at church at all and to watch other people serving in the choir and special music, things I've always done, and wonder if I'll ever get to do those things again. He knows the anxiety I feel, wondering if I'm going to make it through the service without an incident that will cause me embarrassment. So I just do what I can, and I pray that I can find a way to get into some sort of regular schedule where I am able to do the things I want to do again.

So that's my life. I'm not complaining...I just wanted you to know what it's like. You may not ever understand, but that's okay. If knowing makes you a little more compassionate and thoughtful of others who have health issues and disabilities, then I've done my job. You really have no idea how many people around you are hurting and wishing someone understood their pain. And you would be surpised how often those people are subjected to insensitive and even cruel comments and behaviors because of things they cannot control. So keep your suggestions about how you think they should handle life to yourself. And pray for them, tell them you're happy to see them when they do make it, and call to say you missed them when they don't. Don't judge what you don't understand, and just love that person for who they are right now. One day that person may be you.