Gabriel’s Life

Hydrocephalic Author Beats the Odds with a Great Book

Last night I finished Sherman Alexie’s book, “The Absolutely True Diary of a Part-Time Indian.” It was fantastic! I spent one of those nights where you wearily look at the clock glowing 2:00 am, consider the consequences of staying up too late, but then forge ahead because, well, you are almost done, almost done, almost done!

One thing is for sure, you don’t have to be an American Indian to appreciate this heartwarming, heartbreaking, and humorous tale of a poor 14-year old boy trying to survive an intense life inside and out of a reservation. You are right there with him, cheering for him the whole way.

While the book is categorized as fiction, there are undoubtedly many real life components that make up the story. Sherman Alexie was diagnosed with hydrocephalus; in fact, he was not expected to live. He also did grow up on a reservation, and he attended the very school he uses to stage many of his most pivotal, life-changing events.

My friend, Leilani Schweitzer is the one who turned me on to the book. I think I knew what her intentions were from the very beginning, but I honestly did not think about them until I was done. I finished the last page, closed the book, and laid there and revisited the story trying to go to sleep.

All of the sudden I thought, what if Alexie hadn’t survived hydrocephalus? He would have never written the book. I would have never had the chance to delve into his experience and perspectives. I would have never been touched by his emotion and courage. It was then that I really understood what Leilani had done.

Leilani showed me what a wonderful thing hydrocephalus can take away from us. I have never lost anyone to hydrocephalus. Only she has. Only you have. I can only imagine. But now I would never want anyone to take away the story that Alexie shared.

People impacted by hydrocephalus have the potential to accomplish wonderful things. They just need the chance to live, and live healthy, productive lives. The only way that is going to happen is through greater awareness and sharing of information, solid medical treatment, and pushing for a cure.

At the end of the book the author’s character, Arnold and his good friend Rowdy play basketball together in the fading light. It could be the last time they are ever together. They just play, and no one keeps score. There is no fighting and no competition, just two people at peace with one another enjoying the moment together. It is indicative of what I think anyone faced with hydrocephalus would want. A moment without struggle, and a time to enjoy life with someone you care about.

Working on Gabriel’s Life

Before I began working on the Gabriel’s Life project, I had never heard of hydrocephalus. The reason is simple. No one I knew had ever been diagnosed with it. Of course, that changed when I started working with Leilani Schweitzer, a friend and colleague who lost her son, Gabriel to the disease. What I also came to find out is there is still much to know, and there is no cure.

Leilani’s story is heartbreaking, and I cannot even begin to understand the grief and loss she went through and will always hold in her heart. However, I can attest to what she has decided to do as a result of her loss. Leilani embarked upon the Gabriel’s Life project in hopes that we as a community can learn from what happened not only to Gabriel, but to others who have had to face hydrocephalus.

The web represents the best possible means of disseminating and distributing information to a large audience. Gabriel’s Life makes use of that fact and some of the latest online publishing tools to share information, create a community, and give people a vehicle for interacting with those who are concerned with hydrocephalus. Of course the site, just like a community, is only as good as those that choose to participate. In order for Gabriel’s Life to truly succeed, it is up to you to contribute and encourage those you know to do the same.

The hope is that you will find Gabriel’s Life both relevant and valuable and ever-evolving. A site that grows and builds and becomes better because of contributions from people like you. We don’t know if there will ever be a cure, but we do know that information is power, and sharing it gets us closer to finding one.