(a current picture of me)
Hi there! As I mentioned on the home page, my name is Mace'. Here is a little bit about me and part of my Chiari story.
I usually spell it Macie because it's much easier for people to try and pronounce. I grew up in a small town in South Jersey and I wouldn't trade my life for anyones in the world. Writing is my absolute passion, although; I also have a love for photography. Music has helped me tremendously in my lowest moments. I have Demi Lovato and her music to thank for pulling me out of some pretty dark times. I have one best friend that I don't know what I'd do without , concidering she stook with me the whole time I was sick. If you're reading this Mackenzie, I love ya girl. I also have met a pretty good amount of life-long friends during my journey.
Okay enough of the little things and on to my story. I went through nearly 3 years of suffering from Chiari's symtoms. I felt like I was near death, but every doctor I went to told me the same old thing every single time: " Are you an attention seeking child?" "I don't see anything wrong with you, it's all in your head." "You have conversion disorder, your symptoms are from stress." Eventually, they drove me insane and I almost started to believe them, believe that I was crazy. But the more time passed, the more symptoms I was experiencing, and the worse my they were getting. I was experiencing blak outs, severe
I created this website because I feel that NOBODY should have to go through, or suffer as much as I did. I would not wish that on my worst enemy. Screwed On Tight was made so that no one has to suffer the agony that Chiari Malformation can bring ever again. This site will hopefully soon not only be a support group/site, it will be a charity also. Slowly, as the Chiarian Family comes together, and unites, we will not only conquer Chiari, we will conquer everything!
This picture was taken only a few days after being discarged from my 2nd surgery!