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Catherine49

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1 reviews

Review for Arachnoid Cyst Foundation, Burbank, CA, USA

Rating: 4 stars  

Having an Arachnoid Cyst is like having to wear a pebble in your shoe. I tell people if they want an idea of how we live I tell them to wear that pebble for 1 hour, 1/2 a day or a month and after a while you get used to it once you take it out of your shoe. But when it's gone it's gone.

An Arachnoid Cyst is "the brain tumor you get to live with." I hope the "get to live with" because most neurosurgeons don't. They don't recognize the importance of a spinal tap. When they did the pressure on my brain it was 100% higher than the norm and babies shouldn't be telling their mommies "I want to kill myself" by the ago of 3.

I know my suicidal inclinations started as early as 13 as they manifested. I wanted to die since I was 8. I made http://arachnoidcysts.org as personal as possible and didn't realize how many problems I caused by being myself. I knew I wasn't thinking quite right but DAYUM... now that I'm 2 with 40 years experience I feel like I'm 2. And I have tantrums. But it's not cute nor is it fun to find adults that are functionally retarded being treated like we don't understand what's going on for days and then by the time you finish saying what you're saying people are like "We had that argument DAYS ago" and you're all... but I couldn't tell you then because the words weren't coming to me. You overwhelmed me and made me feel like it wasn't too much of a deal but when the deal is done and you won what's the point of fighting?

I hope this is personal enough. Living with an Arachnoid Cyst AND Syringomyelia (a cyst in your spine that moves up and down and hollowing it out so your vertebrae are being popped open. It's a wonderful, painful way to die. I would recommend it to everybody because it makes you a better person. You can think, sometimes, and you can make it real because beating around the bush doesn't make sense to us.

I hope this is enough. Thank you for helping my organization. http://acyst.org. Please donate as much as you can through the website.

If I had to make changes to this organization, I would...

get more donations so I could hire people to get them to write their stories better so that I can reach more people and make "A Protocol, That's All" a reality.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

Role:  Volunteer