Halloween 2021
Halloween this year was hard. It's the first holiday I have a lot of strong memories of that has happened since I became bedbound. There was Easter and the 4th of July but neither of those was ever major events in our house.
Halloween was. Our neighborhood was a popular trick-or-treating destination and every year we would come up with some fancy candy delivery system like a slide or zip line to get the candy down the stairs and save kids the trip. Our house would frequently get a lineup of trick or treaters waiting to test out the cool gadget.
This year, some trick or treaters knocked on our door and that is how I realized it was Halloween. Being completely bedbound I couldn't get the door. Even if I could have managed it I didn't have clothes to put on much less a costume much less candy to give out. I ended up just pretending I wasn't home.
This tiny scenario echoes so much of life with severe ME. Everything you have the best memories of becomes the most painful. Halloween is harder than Easter because my memories of Halloween are better, stronger, more unique. But that doesn't mean I am not grateful for all the amazing memories I do have. I'm also thankful to my relatives who dug up old photos like the second one here of me and my cousins trick or treating. (For those wondering my costume was Molly the American Girl Doll from World War 2)
But just as severe ME affects me, it is also a huge burden on those around me. That is important to remember, ME is a burden, you are not. My parents didn't have any sort of fancy candy delivery system this year. Just a tray out. They have been working tirelessly to try to get my dad here to help with caretaking needs and to organize new doctor's appointments to try to get me treatments for neuro Behcet's. Doesn't leave much time for zipline construction.
I know this year's holidays are going to be particularly hard. Seeing everyone else go back to normal celebrations after being fully vaccinated while myself missing out more than I ever have. In years past I've still managed to be present in my wheelchair. Not as much an active participant but still there. This year I will be one of millions missing.
