My name is Sheila and I turned 50 in November of this year and am so happy to of made it to this great turning point–and that is truthful. It wasn’t so about a year ago when I was once again facing major surgery for damage caused by having Chiari Malformation. I have this disorder of the brain where my brain is l too big for my skull and it spills into my spine.

This disorder is formed during birth, but usualy the syptoms don’t appear until later in life. It was first discovered in the late 1800’s and more people are diagnoised than muscular dystrophy, but less is known about this disorder because it is still considered rare.

That is fustrating because as thousands of us know it’s not true, hundreds are diagnoised per day because it was once bunched together with chronic fatigue syndrome and other diseases.

This is were the anger and lonliness come in. . . because for years we have been pushed from one diagnosis to another and sometimes labled as just plain crazy.

So by the time you are diagnoised you don’t have the luxury of being happy they found the answer because now you are faced with a major surgery.

We’ve become know as “zipperheads” because the surgery requires one’s skull to be drilled into and a long scar is opened down the back of your skull to make room for the brain. Many of us we have to have several surgeries and sometimes we wish it were a zipper instead of having our skulls drilled open more than once!

The greatest gift I have had is the fellowship that has come out of being in a rare network of people and I found them at a very dark point in my life. I truly believe it was my Father “God,” my loving father, who once again knew I needed help, who led me to the internet where I found others like me and this website!

What a better place [Rest Ministries is] to be than a website for others who feel invisible and crazy because our syptoms do not show on the outside.

Some of us face other problems too. Last year after having the surgery to correct the Chairi in San Diego, Ca I moved to Virginia Beach beach for finacial reasons. Then I faced Cervical correction surgery in 2007 where they had to remove 4 cervical discs and bond with a bone from my hip and a 4 inch titanium plate placed to stabilize the spine. This surgery was actualy harder for me than the brain surgery and I had also lost my large support group with the move to the East Coast so it was a very lonely, dificult time for myself and my family.

I am now dealing with problems of having my whole life change once again and trying to get back some kind of life and deal with things I can no longer do like driving and having to depend on others to help me. That has been a humbling experience, especialy sense I prided myself on my independence. Having to ask for help is very difficlult.

I feel like such a burden to others at times and still am struggling with that issue daily. But with the help of God and others I am no longer alone and I look forward to being alive [rather than] wishing I had not made it.

There are still dark times — but the are fleeting because of people like you all who daily help me with your written words and inspiration and encouragemnts truly heartfelt.

Thank you for your help and freindships on this journey I now face. I am truly at peace.

Sheila D., 50 year old mother of 4 daughters ages 30, 29, 15, and 11 and grandmother to two boys and two girls and wife to a loving supportive husband Bob we now live in Virginia Beach, VA with our loving families close by.

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