Last weekend, my boyfriend had to drag me to bed- literally. I had lost the ability to stand on my own. In fact, I had lost all control over my muscles. I had gone completely limp.
This is cataplexy.
Cataplexy is defined as a “sudden, brief loss of voluntary muscle tone triggered by strong emotions.” More simply put – strong emotions can cause your muscles to stop working. This can be any strong emotion and the triggers vary by person. For me, it’s triggered by laughter, and it’s one of the symptoms of my Type 1 Narcolepsy.
For most of my life, cataplexy was a rare occurrence. Sometimes, something struck me in just the right way. Something was just the right kind of funny that while I laughed I could feel my face go a little slack and my knees go weak. It happened so rarely that it took me years to even consider that maybe it wasn’t a normal reaction.
Over the past year, my cataplexy has gotten significantly worse. It happens on an almost weekly basis. I can no longer hide it like I used to, putting my face in my hands so that no one can see my eyes drooping or by crouching down to pretend I’m “doubled over in laughter” to disguise my wobbly knees. Now, I slump over on the table, or my head falls down onto my chest, or I crumple to the ground. What gives?
While the symptoms of narcolepsy can get worse over time, I think a good place to start is to look at what exactly is causing these attacks. Who was I with? What were we doing? What was it that I found funny? And wouldn’t you know, there’s a clear pattern – who I’m with and where I am matters.
The majority of my cataplexy attacks, and by far the worst attacks, occur when I’m with my partner – when we’re cracking up over something absolutely silly and when we’re at home being goofy. They are situations where I feel safe to let loose and be my full, silly self. They occur when I’m feeling joy.
So are my cataplexy attacks happening more frequently because I’m just happier than before?
The night that my partner had to carry me to bed? I was giggling and being silly, acting like I didn’t want to go. He was dragging me because I was pretending to be dead weight – until suddenly I was no longer pretending. My laughter at us goofing around triggered my cataplexy, making it so that he had to ACTUALLY carry me. If he didn’t hold me up I would have fallen to the ground.
I think the safety of these situations, being with a partner who was there through my diagnosis and who does his best to be supportive and understanding, is one of the reasons my cataplexy gets so strong these days. I feel safe enough to be myself around him, my full self who has narcolepsy and sometimes collapses when she laughs.
I’d be doing a real disservice to others who suffer from cataplexy not to mention that this is NOT typically a funny condition. For a lot of people, it’s terrifying. However, I’m very lucky. I’m lucky that laughter triggers my cataplexy, not fear, or anger, or some other emotion. I’m lucky that most of the time I still have at least a little control over my body. And I’m lucky that I have a partner who is quick to recognize what is happening, to make sure that I don’t get hurt, and to comfort me when it does cross the line into scary. Even if it seems that sometimes he has a hand in triggering it in the first place.