#HAWMC Day 6: Dear (or not so Dear) Narcolepsy

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Today’s prompt is to write a letter to your condition – what do you want to get off your chest?

Dear Narcolepsy,

I hate that you cause me to not get the restorative sleep necessary to commit things that happen to memory. I cannot remember my daughter’s first word, her first experience with solid food, her first laugh, or the first time she said, “Mama.” I only remember when she took her first steps because it happened to be on Halloween night. I have little recollection of even my own childhood and adolescence. Occasionally, on a good day, I’ll have a glimpse of a flashback, only then I’m not so sure it’s real and wasn’t just a dream…

I think this was one of the first times she stood on her own

I think this was one of the first times she stood on her own

I hate that I fight against you so hard during the day in order to work and be a productive member of society but sometimes cannot fight in the evenings when it’s time for me to enjoy my time with my family.

I hate that I have to take medication that causes such unpleasant side-effects in order to be able to drive safely. I still cannot forgive myself for the times I drove and got lost on the way home. That should have been a huge red flag that I should have not been driving until I had answers on why I was so tired. I feel so fortunate that sometime terrible did not happen. I hate that I have to take this same medication in order to be able to allow myself to feel emotion without falling to the floor. I hate that it doesn’t always work if I’m not following my schedule and taking care of myself, yet I must admit I am happy it means I have laughter in my life, my main trigger for cataplexy.

The vivid dreams and hallucinations that you put me through are some of the most terrifying moments of my life. I’ll never forget the time you made me think my husband’s CPAP had stopped working and that he was dead. I couldn’t even move to check on him. What really upset me, though, was when I finally woke up only to find that he wasn’t even in bed. It makes me wonder if people who see ghosts or claim to have demons who visit them at night are really just people living with undiagnosed narcolepsy.

Source: 9gag.com via Rachel on Pinterest

 

For as much as I cannot stand living with you at times, I must admit some good has come from it. I have become a part of a community of individuals who treat each other like family. The level of understanding, of empathy, and of support from people a lot like me means so much.

Since learning of your existence, I’ve also learned to be more compassionate. I realize now more than ever that just as people cannot see my struggles, that man or woman whose actions pissed me off may be living with struggles, too, and maybe they’re just having a particularly bad day.

I guess what I’m trying to say is that I’m thankful for the lessons I’ve learned, yet I’d get rid of you if I could. Until that day, I’ll just continue to make the best of your presence in my life.

Now, it’s your turn to share. What would you like you get off your chest?

Comments

  1. Can I make this a solicitors letter? I’m sure I’ve a good case for harassment!

    Writing a letter is a great idea. I’ll shuffle off and write one, then read yours after. If i do it the other way, I’ll just have your words in my head!

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