In Memory of an Astronaut

By Ethan Maurice | December 28, 2016

I met Steve “Boomer” Santistevan because, like him, my life was saved by the staff of Phoenix Children's Hospital. I had an infection of the fluid surrounding my brain and spine, causing a brain-damaging stroke. Boomer had a brain tumor that was supposed to be the end of him. Yet, there we were—still breathing and more alive than ever before. We were the embodiment of the best possible outcomes of our afflictions. I woke up from a coma and made a full recovery. Boomer defied death, miraculously navigating the narrowest path of survival through dozens of brain surgeries.

Hanging onto the fringes of life and peering over the edge changed us. For us both, life was no longer a struggle, but a gift. We knew there was no such thing as the "daily grind." Every day was a miracle. And anyone who might disagree just didn't understand.

We also found purpose in giving back to the non-profit children's hospital that saved our lives. I chose to ride a bicycle across the United States as a fundraiser. Boomer ran marathons, walked, and participated yearly in the Ignite Hope Candlelight Walk at the hospital, a moving experience I regret not sharing with him.

Upon the completion of my cross-country bike ride in the summer of 2013, Boomer reached out to me over Facebook. We messaged each other back and forth for a while, our similar experiences and philosophies revealing themselves. In those messages, I learned that Boomer had unfathomably survived twenty-seven brain surgeries and had his last rites read by a priest four times in his life. A true warrior with a huge heart, I invited him to our post-ride return party.

It was at that party I met Boomer. I felt the warm radiance of his personality, his spirit openly engaging mine. We shook hands and our eyes locked—in but a fraction of a second, they conveyed such understanding. We were survivors. We saw the miracle going on all around us. We knew that despite anyone's best attempt to intellectually grasp the value of this moment, no one could fully comprehend it without surviving an experience similar to those we had, branding such awareness deep into ourselves.

In that moment, we both looked into the eyes of a rare someone who could truly see.

We smiled and shared a couple minutes relating our experiences, but I was soon swept away into the most socially-intense evening of my life. Two hundred others wanted to hear stories and get a word in with me, the kid who just returned from pedaling his bicycle across the United States.

I never saw Boomer in person again. As the following three years passed, we journeyed in our own directions, relishing in life in our own ways. We both kept an eye on each other over Facebook, though—a "like" of a photo or a “Merry Christmas!” and a quick reply exchanged every now and then. Boomer kept running and walking for Phoenix Children's Hospital. I backpacked the John Muir Trail with my younger sister to raise money for type 1 diabetes research. We did things with purpose and shared our experiences with people we loved.

Last week, I heard Boomer was in hospice care. For a moment, everything went flat. Internal silence. Grief gripped me. I immediately sent him a simple message, unsure if he would actually receive it and certainly not expecting him to take the time and energy to respond.

But that night, I received a reply: “Have fun and enjoy yourself!” On the surface, it was a simple goodbye—a phrase uttered so often we don't even perceive its meaning. But sent from so close to the edge, it carried immense weight. It was a message of what was most important in life, sent from a place of ultimate clarity.

On December 22nd, just four days later, Boomer crossed the line that he'd toed so many times before. A line that we will all cross.

I look at Boomer's life as something like that of an astronaut. Repeatedly venturing not into space, but further into the unknown, closer to the edge of life than few ever visit and return. Boomer didn't return with scientific data or images of space, but something more important: understanding. What he brought back to us was a better understanding of the paradoxically incomprehensible fact that all of our lives will come to an end eventually and that we must cherish and enjoy the hell out of the time we have. From Boomer, it's a message that cuts through a buildup of the mundane and lends us a glance at a profound truth we all can't seem to see, but to Boomer was as clear as day.

Here's a reflection of Boomer's written two years ago, around Christmas time. Read it slowly and deliberately. Walk in his shoes. And take what you can from his ventures to and from the edge:

"Today was a great day spent with friends. 15 year's ago today I would have never imagined myself seeing today. I was sicker than I have ever been in my life and experiencing the worst pain ever that came days before killing me. My mother took me to the ER and after an x-ray on my head. I still remember the look on the doctors face when she came in to tell me that they found a plum sized tumor sitting on my brain stem. I was 15 years old and didn't even know that brain surgery was an option. With the amount of pain, I was in I thought everything was over. After the shock went away it was replaced with acceptance. I had accepted what had happened to me and what I thought was going to happen to me.

The hospital transported me immediately to Phoenix Children's Hospital where I ended up having my first 4 brain surgeries. They failed the first time when they tried to do it by making a small hole. Second time they opened my head up in half like a can of tuna and got most of it. The 3rd time they were able to get the rest of it. The 4th time was for my shunt which transfers the fluid surrounding my brain to my stomach because it was unable to do it the natural way anymore.

During my time there I had a priest visit me to read me my last rites. Throughout the years I have had this done 4 different times. They ended up removing all of my tumor the day after Christmas. They saved my life which I am very grateful for even though I was ready for what I had thought was my last day alive. While I was in the hospital even Santa came to see me. My father told me that when Santa left my room he fell to his knees crying and his wife had to pick him up. My father told me Santa said I was the sickest kid he had ever seen in his life. This is the biggest reason why I try my hardest to help out that hospital. I owe them my life and could never thank them enough!

I just ask everyone out there to not take life for granted. Live your life to the fullest."


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