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spirit

Illinois

Hopeful Since 2018

Followers 4122 Following 6038

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This is me opening up❤️‍🩹

Nov 22, 2024
15
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So guys I’d like to open myself up and be vulnerable with you. I feel like I’ve been keeping a secret not necessarily intentionally but because it’s hard for me to actually open up about my health because I don’t want others to feel I’m incapable or incompetent , I’ve had many people dismiss it or make me feel like something is wrong with me but I want to share with you now. I have a condition called Chiari malformation and I had brain surgery for it at 17 but it is normally found and fixed in infants. I was near death and lifeflighted to the hospital. Basically my skull is too small for my brain so it pushed it down in my spine so they did a procedure called a decompression where they took out part of my skull in the back of my head/neck to relieve the pressure. Without the surgery I could have been paralyzed if my brain had been pushed down any further into my spine. So that prevented paralysis but it’s a chronic pain condition I live with almost secretly everyday. I call it an “invisible disability “ because you can’t see it but it’s constantly there, the headaches. On top of the chiari i have arthritis in my neck from the surgery and man did I not realize how much you use your neck until after the surgery.
I stopped driving because I can’t turn for my blind spot. I don’t talk about it much because I’m very hard on myself. I just want to be able to do what everyone else does and I have so many hopes and dreams but sometimes it’s a struggle to even get out of bed. They wanted to hold me back in school but I got a tutor, relearned how to walk again and go through physical therapy. I always pushed myself even if it caused me pain because honestly missing out on life was much more painful than any physical pain. I also have always felt like a burden or a problem that no one would want to deal or bother with me when there are plenty of healthy people around. But I’m working at it day by day or week by week whatever pace I can do but you guys support and kind words mean the world to me. This may be for another blog but I have no family so I consider you guys my family and I know it takes me awhile to open up but I’ve always marched to my own beat. If you’ve read this it means the world to me. Love you guys✨🩵

(We are called “zipperheads” because of our scar )


@missy @penny @kyrie

VIEW 8 of 8 COMMENTS
spirit:
@sorcerer333 I appreciate you and I’m sorry about your “invisible disability “ I also have depression/anxiety/adhd which are also invisible so it’s hard but we got this! As long as we have each other for support. And I have my bad days but I try to remind myself of course what I’ve been through and not be so hard on myself ✨🩵
Nov 24, 2024
spirit:
@aqralph o wow I’m sorry to hear that hun. I hope your days are not filled with too much pain and I hope whatever they found got fixed✨🩵
Nov 24, 2024

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