Why Call It ‘The Spoon Theory’?

(When we’re well and truly ‘forked’!)

Hey, everyone! It’s Tuesday, so I’m back with another instalment of The Near Life Experience. For those of you unfamiliar with “The Spoon Theory” (created by Christine Miserandino) it’s a way to show how people with MS (and other chronic illnesses) are trying to get by on very limited supplies of energy per day compared to a normal, healthy person. I thought I’d post this diagram first that explains it really well. (Go take a look at it now… I’ll wait).

Ok, let’s continue. Another way I could illustrate the theory at this exact moment , is the fact that I had every intention of writing about something completely different today, but guess what… I don’t have the forking spoons to do it! And, while we’re discussing forks and spoons; while I was laying awake at 3am last night, I realized I’d much prefer a fork to represent this whole “situation”. Forks are sharp, and they can stab you with 4 prongs AT THE SAME TIME! As opposed to a soft-edged, adorable, rounded spoon, which is only really good for shoveling ice cream into your mouth, and I can’t do that anymore, so fork it!! A fork just seems to represent the pain and stabbiness of this whole situation a lot better.

I’ve never felt like calling myself a “spoonie”, even though I’m totally livin’ that whole spoonie life to the max right now. (I’ve also never called myself an MS Warrior, BUT, that’s a post for another time).

As we speak, I’m in a bad MS flare, after being sick with a nasty flu, and I’ve been forced into doing the absolute bare minimum for the past month. Like I’m literally, just sitting or laying in my bed, then periodically staggering, while holding onto the walls, like I’ve been drinking whiskey all day, to the bathroom, then taking meds for the extreme nausea and vestibular migraines caused by my 24/7 dizziness, annnnnnd repeating it all again. The biggest deal in all of this is when I actually shower and wash my hair. Then THAT IS IT for the whole day and it MUST be done first thing in the morning, or I’ve missed my small window of opportunity. I had minor surgery yesterday, and going through that was easier to recover from than taking a shower and washing my hair. (Like WHAT??!)

Have you seen the movie “The Secret Life of Walter Mitty” starring, and directed by Ben Stiller?

There’s a part in this movie, where his climbing guides have left him and he’s trekking up this steep mountain in the Himalayas alone. For some reason, he gets crazy good reception up there, and his cell phone rings. He answers it, breathless from the lack of oxygen at that super high altitude, and he has to cut the person off who’s asking him a bunch of questions, by saying “I can’t talk right now. I gotta make oxygen choices”, then he hangs up.

Ever since I saw that movie years ago, I have been saying that line outloud a lot, “I gotta make oxygen choices”. And, I feel like that’s what I’ve been doing since I got sick 9 years ago, and then MUCH sicker a year and a half ago. I’m just doing what I can to get through each day, “making oxygen choices” at every turn. Lately, a lot of these choices have been really emotionally painful, and tough on my mental health. But, my limitations have increased so much in the past year, that I have to say, (usually with tears streaming down my face) “I can’t go”, “I have to cancel”, “you can’t come by”, so often. And, it forking sucks.

Sometimes, it’s just me, telling myself that there’s something I can’t do. Which is a tough conversation to have in your own head, let alone with another person. I HATE letting other people down, but I’ve realized it hurts almost as much to let myself down. I always keep these notes and screenshots on my phone of all of the art exhibits I want to apply to be a part of throughout the upcoming year, (just tryin’ to keep the dream alive). And this year I scaled my ambition way back, but thought, I could definitely do a “square foot show”, which consists of paintings that are all just 12x12 inches. I even made certain that I had at least 5 of those small canvases on hand. But, as each square foot show “call for artists” came and went, and I didn’t have the forks, I began to realize it might not work out. I had to delete the final call for artists just this morning, when I had to admit to myself that there was just no way I could meet the application deadline in a week. I literally can’t even paint right now at all, let alone create a whole bunch of complete paintings!

I have had to accept for another year in a row, that I just don’t have the cutlery it takes to do these shows. Hell, I don’t even have the forks it would require to ATTEND these awesome exhibitions, while being pushed in my wheelchair, as a mere SPECTATOR. But, of course, I still scroll through instagram and see SO many of the artists I love, possessing seemingly endless supplies of forks, like actual dump truck loads of forks, spoons, knives!! They probably even have those chilled salad forks!! They are setting up in these huge white booths, hanging their art just right, standing for days on end, selling their art and chatting with REAL PEOPLE (which I miss doing so much), and participating in so many shows - and it forking hurts. (This is yet another reason for me to continue going to therapy… which I also don’t “go” to, it’s zoom therapy. I highly recommend this to all spoonies and forkies, cuz you can stay in your pjs, in your bed, and still speak to your therapist. You don’t even have to turn your camera on).

I don’t have the brain power to properly end this blog post in a nice, neat paragraph. So I’ll just say “FORK YOU, MS (and all other incurable illnesses”!!

And, I’ll meet you all back here next Tuesday! (Hopefully with a little more cutlery in my possession).

Love,

Kimberly

P.S I do respond to each of your kind and thoughtful comments, but I don’t know if you actually receive my responses! Can someone please let me know in the comment section if you get my responses? Thanks!