Looking Back…Moving Forward: Facing the Future with Fierce Determination and Optimism

This is college application time for the high school seniors in our community who are applying to college. The pains of completing the paperwork and writing the essays can be felt throughout the entire family, as many parents will attest! For seniors writing their essays, it is also a time of self-reflection. They dig down deep to find the perfect words and sentiments that will truly reflect who they are, transforming lines on a page to a living, breathing human being. Elijah Lawrence is a member of our Teens Take Charge (TTC) Advisory Council, has been a summer intern in our HA office, and his family has had a close connection to HA for many many years. As we continue our 30th anniversary commemoration, Elijah gave us permission to share his college essay. As he reflects back on his life, he also reflects back on the values his parents have instilled in him, as well as the values, information and self-advocacy tools that TTC and HA strive deliver to our community and, particularly, our young adults. Pull out the hankie…or at least be ready to clap loudly.

By Elijah Lawrence

Picture this: A four-year old bounds into the middle of a high school pick-up basketball game. A player pats him on the head and then recoils: “What is that?” Four-year old: “That’s my shunt. S-H-U-N-T. Any other questions?”

Seventeen years ago, I was born with a serious neurological condition called Hydrocephalus, literally “water on the brain.” Four days after birth, neurosurgeons implanted a shunt deep in my brain to drain the chronic build-up of excess fluid due to a narrow third ventricle. Except for several days on morphine, a turban made of bandages, and a prominent bump under my scalp, I left the hospital a healthy baby.

Fast forward four years: I am a young boy undeterred by warnings about contact sports or cruel comments. And, a boy who knows more about brain anatomy than any preschooler should. Even then I was eager to educate people about hydrocephalus and, of course, to fit in.

There are many challenges people with Hydrocephalus face. I must pay attention to signs of potential shunt failure, which necessitate a quick trip to the nearest operating room for a “revision.” As a young child, I participated in occupational and physical therapy classes to help with balance and coordination. I have worked very hard and successfully to control head movements, which required that I deploy my well-honed skill in countering teasing with confidence and humor.

My parents sent me to sleep every night with the message, “You can do anything and everything” and I believed them. I developed a wicked sense of humor; learned to dance, ride a bicycle and swim; and worked successfully with my teachers to ensure that I did as well as, or better than, the other kids.

I was also given the gift of a love of music, a strong voice, large “piano” hands, and a love of performing. One of my first experiences with a large audience was as the nine-year-old featured performer at the National Hydrocephalus Conference. I belted out Wonderful World and watched in amazement as rows of neurosurgeons and parents pulled handkerchiefs from their pockets and wiped their eyes.

Fast forward to 8th grade: I am in a summer camp production of Oliver. My shunt fails and I am rushed into surgery. Two days later I am on stage performing, my bandages hidden under my oversized Oliver-style cap. The show must go on!

I firmly believe that my ability and passion for music are somehow linked to my Hydrocephalus. Music has provided me with a platform for building confidence, having a special talent to share, and gaining a remarkably diverse group of friends and teachers. I am proud that Hydrocephalus has never stood in the way of my education, my music, or doing what I love to do.

Fast forward through high school: I live a healthy and rewarding life with my shunt still in place. The determined four-year-old who stood up for himself on the basketball court is still a big part of who I am. Growing up with Hydrocephalus has helped me learn how to overcome challenges and to face the future not with fear, but with fierce determination and optimism. In whatever career I pursue, I will seek ways to inspire these qualities in others with chronic medical conditions.

Picture this: A 30-year old vocal musician brings the roof down on a benefit concert for children with shunts. S-H-U-N-T. Any other questions?