I Am Held Captive by My Cataplexy

I’ve lost someone close to me, and I am having a hard time both physically and emotionally handling it. Experiencing grief when you have a condition such as narcolepsy feels so unfair. If I allow myself to feel the sadness and grief, the chances of me having a cataplexy episode increases substantially. The thoughts that find their way in have the potential to not only emotionally hurt me, but also physically.

I am still learning my cataplexy triggers

Cataplexy holds a power over me like no other health condition. I cannot control it; however, I can lessen the chances of having an attack.

I was diagnosed with narcolepsy over 10 years ago, and I am still learning my early triggers and what I need to avoid. This can be hard because my triggers change and evolve over the years.

Feeling constantly at risk of harm

The inability to express your feelings when and where you want because you are afraid of turning into stone is a fear unlike any other. People with cataplexy are always in danger, whether it is just going to work or walking to the store. One sudden noise or rush of emotion and we are held captive again.

Cataplexy does not care if you need to be at a school function, funeral, church, wedding, or doctor’s appointment. Our intentions mean nothing if our bodies won’t respond correctly.

Asking for help feels degrading

The celebration of life for the person I lost is going to be 1,800 miles away. Whether driving or flying, it is dangerous for me to go alone. Asking for people to go with me for safety reasons feels degrading. I know I should be able to ask and accept in grace; however, I am 52 years old. I don’t want anyone to have to hold my hand. I tell myself I can make the trip solo, but it is a gamble each time. I am going to push my luck and there will be a disaster one of these times. My luck is going to run out, and that petrifies me.

I don’t want to be asleep and unaware of my surroundings on a plane or train. I certainly cannot drive that distance safely by myself. This brings the anxiety up a level because planning gets a little more complicated. Relying on another person when you want to feel independent will chip away at you slowly.

I will be brave and face whatever comes

It is not fair that I can’t kick and scream and cry and yell to the clouds above without feeling like I might land flat on my face. I’ve trained myself to react so stoically in public. I live in a neutral head space as much as I can. I focus on what I have in front of me, and I block out most of what is going on around me. It is a sensory overload. Overloading can cause the sudden onset of sleep, and if I am in the middle of an airport, the consequences are endless.

Whether I go alone or with someone to help me, I must be there. This is not one that I have an option of saying goodbye in my own way and from home. I cannot have the guilt of avoiding it haunt me in my dreams for 10 years. I must face my sister’s death and be there for her no matter what.

I will be brave and face whatever hits me. I just wish for once that I could have one moment without the shadow of cataplexy.