PART I
MY STORY


You may ask why I am telling my story first, or why I am telling it at all. The answer is simple. It is important that you, the reader understand that I know where I am coming from when I talk about a brain injury. The experience is first hand. I have been to where I will talk about - each place. In fact, I have probably been there several times.

If you are the one with the brain injury, you have my deepest sympathy and encouragement. It is not an easy place, but it is a place where one can thrive. As you journey through this book, please keep in mind that you can be a thriver if you so choose to be.

I have searched many years for answers to the questions addressed in this book. Questions of life and death. Why am "I" afflicted with this injury, this disorder? How do I survive and thrive under its crush?

But, this story is not about me, it is about you. About what you can do to deal with your brain injury. How you can live and even prosper with it. I have started with my story to set the background and to provide a reasonable framework from which to speak. All though it may be tempting to jump ahead, the book is best read in its entirety and I encourage you to do so.

Mine is not an injury from an accident. In fact, it is a neurological disorder that you probably know of, called hydrocephalus. Some incorrectly refer to it as water on the brain. Where does it come from? Well, hydrocephalus can be congenital, result from a head injury, develop because of a neurological infection, or emerge with adulthood. When it emerges with adulthood it is referred to as "adult onset"; in other words, it just happened because you grew up. That's what I have; adult onset hydrocephalus.

Hydrocephalus is a simple disorder conceptually. There is too much fluid in the spinal column and cerebral cavity. The brain produces the fluid which then circulates through and around the brain and the spinal column by way of the ventricles, or openings in the brain. Cerebral spinal fluid, or CSF, is completely replaced every 24 hours. Hydrocephalus occurs when the brain either produces too much CSF, or it does not reabsorb enough.

So, how is hydrocephalus a problem? When CSF collects in the brain, it will create pressure just from its volume. The volume of fluid can damage brain tissue. As pressure from excess fluid increases, brain functions will be comprised. My brain, for example, produces about 12cc more per hour than it reabsorbs. It is easy to see how that could be a problem without a shunting device.

Another difficulty is infection. The treatment for hydrocephalus involves insertion of a draining shunt. The dura mater, or sack around the brain which contains the CSF, will be compromised when a shunt is installed and infection becomes a major concern.

I have been through many, many rounds of surgery, several infections, and numerous encounters with both health and illness. Currently I am in a long, long, nearly three year period of health. I have also finally learned where, in my case, the hydrocephalus came from and how it began. Let me begin here.

My story starts when I was very young, extremely healthy, and in elementary school. Our teachers took a bunch of us to a psychiatric hospital. I am not sure what the purpose of the trip was, but its effect on me has been long lasting and profound.

While the rest of the kids were touring one part of the home, I and another boy snuck off to see what was behind some closed doors. I do not know about the other boy, but I had the encounter of my life. It was there that I met Roger. I did not know who Roger was and the significance of meeting him was lost on me until many, many years later.

What the other boy and I saw, was a room of cribs. The cribs were full of children, teenagers and adults. They were all dressed only in diapers and gowns. Roger was an adult male in the crib which stood right in front of me as I entered. He was physically shaped like the rest of the people in the room. His head was huge beyond description. His body was the size of a young child.

Roger shocked me and I turned and left the room as quickly as possible. That room of people with grotesquely huge heads, shrunken bodies, diapers and cribs. After we left the room, we laughed at them. Probably out of sheer shock and it was wildly inappropriate. Nonetheless, we laughed and the memory of what I saw has never left me. I did not know it then, but Roger would be back in my life in the future.