Her ET Has Taught Her to Advocate for Herself

Each semester, the International Essential Tremor Foundation presents four scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our fall 2019 scholarship recipients.

By Elizabeth Carroll
2019 IETF Scholarship Recipient,
Student at University of Massachusetts Amherst

For the longest time, I didn’t notice my shaking hands. Classmates would point it out in the cafeteria and I’d respond quizzically. By eighth grade, however, my hands were nearly impossible to ignore. Writing became difficult; at times I would finish a sentence only to realize I couldn’t read my own handwriting because my hands had a mind of their own. Small tasks, like eating and buttoning my own shirt, brought frustrating challenges on my worst days and minor irritations on my better days. Eventually, a neurologist diagnosed me with essential tremor (ET). While the condition runs in my family, I found myself caught off guard. My diagnosis labeled me with a disability, the same disability that I witnessed rob the independence from my elderly aunt.

Afraid, frustrated and self-conscious, I began to work with doctors and my school to manage my condition. By high school, well-versed in my 504 Plan (a plan that documents how a school will provide support and remove barriers for a student with a disability) and armed with special pencils from my school district’s occupational therapist, I entered freshman year feeling more confident about my tremor than ever before. My accommodations were transformative in the classroom, but I quickly realized that in order to use them, I had to talk to my teachers about my 504 Plan. With that came a new valuable skill: how to advocate for myself.

The year I got my diagnosis of essential tremor was the year I discovered my fascination with the law. Advocating for myself in the classroom was my first taste of being an attorney. I was my own client, negotiating and listing my needs to meet my goal. As my high school career continued, it became clear that my tremor was not going away, but neither was my fervent desire to attend law school and spend my career advocating for others.

My tremor and love for the law have become intertwined. Quite literally, my tremor is there whenever I participate in mock trial and government programs. Public speaking is a battle between my expressive hand gestures and violent trembling. Once, I was even marked down in the National Judicial Competition for having “distracting hands.” While I was outraged at that scorer’s ignorant comments and point deduction, I returned the next summer to the National Judicial Competition to play a defense witness who was the victim of domestic violence. My performance included “believable shaking hands” and earned me two nominations for the Outstanding Witness Award, making me the first in Massachusetts history to get that close to winning a coveted glass gavel award.

Outside the courtroom, however, my tremor has taught me about law on a deeper level. I have a unique appreciation for special education law, as I understand the difference that accommodations can make in a child’s education and future. When I graduate college and law school, I hope to be right back where I am today. Yet, instead of advocating for myself in the classroom, I’ll be advocating for another student with a disability in court or at an IEP (Individualized Education Plan) meeting.

*********

Do you want to help support students with ET during their educational journey? Make a donation to the ET scholarship fund online.

Being a Child with ET is Like Being a Tiny Sapling in a Windstorm

By Allison Dyke,
Student at Kuyper College

Allison Dyke

Having essential tremor is like being a tree with leaves shaking uncontrollably in the wind. Even though your roots are strong, you are unable to control the movement of your branches.
However, being a child with essential tremor is like being a tiny sapling stuck in a powerful windstorm. You are not fully developed and your roots have not been completely planted.

ET Diagnosis
Since the age of four, I have battled with essential tremor. My shaky hands and legs made tasks such as eating, tying shoes, and riding bikes difficult to complete. I was just learning how to do these activities, which can be challenging without having a movement disorder. While these tasks were strenuous, the hardest part about being a child with essential tremor was other children and adults jumped to conclusions without understanding what essential tremor is.

“She’s just stubborn,” was often coldly stated to my parents as an explanation of why I was failing at making a perfect bow with my shoelaces. If I wasn’t being “stubborn” I must be either nervous or cold. Fine motor skills were frustrating to master and I became withdrawn from participating in physical activities. It was hard to understand why I couldn’t do what other children my age could do. With supportive parents, I was encouraged to never give up. The saying at my house is, “Where there is a will, there is a way.”

Soon I found an activity where shaking didn’t matter, swimming. It helped rebuild the confidence that this disorder had taken away. I found ways around difficult tasks, such as using assistive devices to improve my penmanship or supporting my elbow when applying makeup. It was clear that the physical and emotional effects of essential tremor were not going to dictate my future.

Connecting with the IETF
Then at sixteen, I discovered the International Essential Tremor Foundation, and wish I would have found them sooner. Their website provided informational downloads that I gave to my teachers and school administrators, so they could better understand this disorder. I connected with other kids my age who were going through the same experiences. IETF encouraged me to reach out to my community by organizing awareness walks and starting a support group. And they provided me with a college scholarship. With their support, I have met wonderful people who understand what having tremors is all about and I know I am not alone.

Now I’m nineteen and people still ask if I’m cold or nervous. But, I’ve learned that sharing my experience and educating others about essential tremor gives me an opportunity to explain that this condition is not just for older adults, but impacts young people as well. An estimated 10 million people in the United States are affected by this condition, yet very few have heard of it or understand it’s impact. Through awareness, I’m no longer a tiny sapling; I am strong oak supported by a dense forest away from the wind.

Editor’s Note
Allison is one of thousands of children and young adults around the world who struggle to live normal lives with essential tremor. She is a former IETF Scholarship Recipient. The scholarship program is one of many support programs conducted by the IETF. Your donations help support these programs and people with essential tremor. Donate today.