Happy New Year?
Happy new year?
Reflecting back on 2021 is honestly a bit depressing. Looking back on my photos from the year I don't have a single picture that isn't in a darkened room, in my bed, in pajamas besides this one (still in my dark bed) photo from Christmas. The most adventure and excitement in my camera roll are screenshots from when I was able to play some video games.
This is a big change from 2020 where despite spending the entire year sick and mostly in bed I still had beach pictures, days out, living room picnics, and even my wedding photos.
This year, Myalgic Encephalomyelitis was me. Severe ME did not leave room for any of myself to survive independent of it. Everything from the past year was either something MECFS did to me or I did in order to cope with and survive ME. (This account being a major coping mechanism to deal with the systemic prejudice faced by millions missing worldwide)
Despite the years' struggles I still managed to enjoy some things over my winter break such as Korean fried chicken for Christmas dinner, a hot pot night, and cookie decorating. Over the course of the year, I organized greenery in my room, played some video games, and found an autistic therapist. While all of these activities had to be modified for me to do them in bed and still stretched my abilities I am very grateful to have been able to end the year on a high note. These small activities were essential to my survival in the emptiness of bedbound MECFS.
2022 is truly a black box for me. With IVIG in my future, pool construction, and my health reaching a breaking point, I have no idea if this will be the year I come back to life or the year my life truly stops. I can only hope for the former and keep going.
To all my fellow bedbound persons with ME for whom another year has passed with zero progress or massive setbacks, I see you and I support you. All we can do is remain in stasis as long as we can bear this living death and hope that next year some enchantment might wake us from our nightmare. In the meantime let us all tiptoe carefully into 2022 and hope that we don't set off any tripwires.
