Fear of Hurting Myself or Others

As a person with narcolepsy, I am always thinking about safety. It is the one thing that I am always aware of.

Considering safety

I analyze the stores I walk into, and I always know where there is a bench or place to lay down nearby.

When planning for a trip, I will bring up all the pictures and maps of my destination to get an overall idea of the location. If I am staying in a hotel, I will look at their gallery photos and try to get a sense of the lobby and outside areas. Knowing the layout of the hotel before arriving is helpful in choosing the location of our room as well. I do not do well next to the pool or if my room is in a high-traffic area.

Trip planning and traveling can be complicated, however there are other parts of safety that I worry about.

Worried about dropping a baby

When I get overwhelmed with emotion, my cataplexy gets triggered. This emotion can be anything from joy to sadness. It is not always just my safety I am concerned about.

One experience was troubling for me a few years ago, and I still remember it like it was yesterday. My granddaughter was born, and I traveled with my husband to see her for the first time. She was only a few days old and fresh from the hospital. I was so excited and emotional that I was afraid to hold her in fear of dropping her. I have never had that fear in me before, and I was not expecting to feel like that!

We went out to a restaurant, and I was finally brave enough to hold her while we were in a booth because the table was there, and I had people on both sides of me. Nobody knew that my brain was screaming “DON’T DROP THE BABY!!!!!”

My husband asked me why I had not held her earlier, and I explained to him through tears that I didn’t trust my body. It had never dawned on him that I had that inner turmoil. Even after all these years of being supportive and getting educated about narcolepsy and cataplexy, it was still a surprise to him.

Alleviating my apprehensions

Looking back, I now see that I could have sat in a particular way on furniture or asked someone to assist me and be next to me in case my body went limp. I was too embarrassed and ashamed to do that the first time I saw her. I also think my emotions were so high that all “practical” thinking was out the window. I was kind of working with half capacity.

When my son was married, I did try to alleviate any apprehension I had that day. My husband agreed to concentrate on watching my mannerisms. He watched for my stability and whether I was starting to slur. We made sure the shoes I wore under my dress were flat and that I was sitting every chance I could get.

I could barely feel my legs that day, and I was worried I would ruin the wedding if I had a cataplexy episode. I always say that having one is worse for the people around me, because they are scared and do not know what to do. That is the last thing I wanted anyone to remember about their special day!

Preparing beforehand

I am still working on having confidence to attend big events. The fear is overwhelming to deal with. This is why I go through the steps of researching and gathering as much information as possible before I leave my home. I may never get to the point where I do not plan as much, but for now it helps me to know the layout of a building and the options I have. Nobody wants to end up facing the floor!