The other day, I had a conversation with a dear friend, who also suffers from hydrocephalus. As she shared with me some scary scenarios that she is dealing with in terms of her health, I was amazed by her fortitude, her upbeat attitude, and her resolve. Her doctors may not have all the answers, but she continues to do everything she can do to live and love between the madness. That energy is beautiful. It’s rare. And it inspired me to write about what the phrase “stay in the arena” means to me. This is what I see in her, and what I aspire to be— within myself.
Theodore Roosevelt became the youngest president of the United States in 1901, after overcoming childhood illness and personal loss. Throughout his life, he was faced with incredible challenges, politically and otherwise. In his “The Man In the Arena” speech in 1910, he laid out the secret to winning, with absolute certainty.
"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat."
In these iconic words, I have found that the true call to action is to be willing to stay in the arena, to be willing to fight, even when it’s difficult. In my own life, especially in the past year, I have had to remind myself of this again and again. It’s human nature to focus on the negative, walking through this life complaining and blaming. But there is incredible freedom in letting go of all of that, and simply be willing to accept the trial at hand with grace and grit. One day at a time, and sometimes one minute at a time, you move purposefully through the pain, and come out stronger on the other side.
When I was diagnosed with hydrocephalus, I was seventeen years old.
I was healthy.
Full of dreams and promise.
I had aspirations of being a professional musician, and planned to move to Austin, Texas after high school. My illness brought those plans to a screeching halt, in January of 1998. In the 18 months that followed, I had four brain surgeries, and my life path shifted significantly. Even though my hydrocephalus stabilized with the ETV surgery that I had at age 18, the dream of life as a professional fiddle player (on the road and in a different place each night) had drifted away on the river of spinal fluid that now dictated my decision making.
But even so, I was reminded that
I was still healthy.
Full of dreams and promise.
I was still the same person…
I was just wiser, more experienced
In 2012, after about 11 years without surgery, I found myself back on the operating table, with a shunt system back in my brain. In the five years since then, my hydrocephalus has been anything but stable. I’ve had 13 brain surgeries in the last five years. Some days are incredible and filled with victory, and other days are difficult and exhausting. But each minute of each day, I get the opportunity to make a choice… to stay, to fight, and to do everything in my power to live the best life that I can.
OneRepublic’s song I Lived sends this message loud and clear - I hope if everybody runs, you choose to stay.
Hope when you take that jump
You don't feel the fall
Hope when the water rises
You built a wall
Hope when the crowd screams out
It's screaming your name
Hope if everybody runs
You choose to stay
Stay in the arena, friends.
Life and love are well worth the battle.
for Brianne - xo
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x28), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.