Howdy Hydrocephalus

Understanding my unique gyroscope

Land of the Misfit Toys

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I found this from the last days of being in Unit 58 & thought I would post.

I think Land of the Misfit Toys is from Ruldolph the Red Nose Reindeer. I jokingly thought this as I went into Unit 58’s dining room this morning as another guest waved for me to sit down by him. I wander around the room trying to find a chair to drag over for breakfast. Holy cow – lots of mobile people in here now. You know you have been on the unit for a while when you have your “dining room gang” I don’t hang with the overly chatty crew but instead we have some conversation and understand each other’s uniqueness’, as well as, feel comfortable eating in silence because “I UNDERSTAND”. I know what people mean when they say “they have been here for five & hold up five fingers instead of saying it). I understand when we talk about our kids. I understand when someone says “it is a good dinner” & know they meant to say breakfast. I understand the effort to control a body part to put food in a mouth. I understand the effort to speak more than one word answers. I understand when you eat and leave without saying anything you are not being rude (plenty of other things going on in our heads & I do the same thing). I can understand when you speak, even though others may not & remind you where you are when you are confused. I now feel at home with this gang and can laugh at myself more

This week I have been enlightened to see challenges overcome by other people on the Unit, as well as, overcoming my own challenges. I am learning to be patient. I know not to push the driving thing now and wait until my visual stuff calms down or goes away.

Then I went home a week or a few days later – I forget. I missed the safety of the Land of the Misfit Toys when I got home. There was so much going on & a lot to process visually & cognitively; there was no routine; no working on me time – it was full on kids and family first. My meds were not working so I was contingually in pain – 24 hour headaches (doc says like migraines) & 24 hour burning/fire ants crawling on my right side.

I know I found it strange for me to be missing the safety of the Land of the Misfit Toys, but there is this grand allure of being in a controlled environment. Yes in this controlled environment we were all impacted by either spine, brain or stroke, but not so much that we should always live in isolation such as the land of the misfit toys, but are instead taught the skills and strategies to venture and make a new life for ourselves. Transition has had its ups and downs and thankfully more ups for me. I am more cognitively aware now (my mass amount of medicine working out? healing brain?). I know that inclusion and acceptance happens easily for me because I look the same. I only hope that it happens easily for everyone else who has left from the unit as well.

I know that most people look at me and I look normal – no I am not drooling at the mouth – the injury is on the inside of my head – duh! My physical stuff is minor and I work hard to keep rightside working. If you look hard I may not swing my right arm as much as my left and my right side has more dropsie moments than the left. My right foot may slightly walk different when I am tired. My right side tires out more easily and the coordination is not always there than the left. It is harder to see the differences, as I am left-handed. My speech has good days and bad days! My internal brain stuff is a little quirky. I am still learning weird stuff about myself everyday. I know that I have word and spelling issues more than before – For examply, I didn’t know how to spell drowsy and lots of other words. I now ask for the spelling or look them up. I am slower at the math stuff too, but thank goodness I have a little guy in grade one…we get to practise together! And I still can’t count backwards from 100 by 7 but I have memorized the first two 93 & 86 (had to use my fingers on the second number). The biggest thing is how fatigued I am. I hope to have the same energy as what I had before all this went down, but that may take a long time but I hope to get back to the same energy levels. I am a two time a day napper these days.

I remember that I used to pity or feel sad about the Land of Misfit Toys when I originally watched Rudloph the Reindeer, but now I have a who different perspective. The Land of the Misfit Toys serves a purpose if there is growth, renewal, skill building and hope. Hope to be accepted and included when they take the courageous steps to forge their new lives outside their little island.

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