In January 2011, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) A disease. Terminal. Approaching 34 years of age, I do not fit the typical ALS criteria as I am ‘too’ young. An Outlier.
Although there are currently no medical solutions for this disease, I believe my body can be healed. Honesty leads to Grace leads to healing. Recovery percentages for the ALS population are infinitesimally small. To heal, I must be… An Outlier.
Michel and I spent nearly the past two years trying to become pregnant. Post diagnosis, we sat together and made the decision that we should still have a child. We elected to have an In Vitro Fertilization procedure done. The procedure is expensive and has a relatively low success rate. Our child will be unique. An Outlier
I have lived an amazing life. As much as possible, I want to get that life documented for my child. From the outside my life looks storybook, until the disease part, of course. I have great friends, a beautiful wife, parents who love me (often in their own dysfunctional way), money (sort of), fame (sort of), success, intelligence. I have been extraordinarily blessed. An Outlier.
All these amazing elements are parts of me that could become mythical and heroic for my child. That’s fine. Taken alone, these elements are only a myth, not the whole story. I want my child to know me. The entire me.
I am often tormented by life choices. I grew up blending into other peoples families because I was ashamed of my own. I poured my entire soul into athletics because I was shy and embarrassed in other ‘normal’ interaction. I struggle with envy. I became addicted to my identity as a counter culture athlete. And I struggle with my own contentment as a husband and a friend. I procrastinate and avoid regular duties that plaster the walls of my life. I hate traffic, cities and technology. Yet I sit here in New Orleans, barely a city, typing away on a phone, computer, camera, stereo…. I love New Orleans! The family, the culture, the people, the restaurants, the history.
I love my life. I get angry and frustrated. I cry. Tears of sadness and tears of joy. I love. I laugh. I Gras.