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.

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

If You Could Trade Your ET for Any Other Disorder, Would You?

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 Anna Grace Easley
2019 IETF Scholarship Recipient,
Student at William Carey University, Hattiesburg, MS

Anna Easley, 2019 IETF Scholarship Recipient

Like millions of others in the United States, I suffer from essential tremor or ET. At the age of two years old, my mom started to notice my hands shaking when I would go to reach for my toys. I didn’t realize that my hands shook until the age of four years old when I was learning to tie my shoes. From that point on, I knew that simple everyday tasks were slightly more difficult for me than they were for other kids my age. I would struggle to tie my shoes, put my hair in a ponytail, paint my nails or even color a picture. My tremors got worse with age and I began to notice that other people in my family, like my father and grandfather, had the same condition.

By the time I started high school, my ET got to the point where I started to get picked on at school. People at school would call me “shakes” and would laugh every time I would spill a drink or drop something due to my ET. It was at this point when my family and I decided that I should go see a doctor.

At the age of 14, I was diagnosed with essential tremor by Dr. Shankar Shiva Natarajan. He prescribed me medicine to help my ET, but the medicine could only do so much. The thing that I am most passionate about in my life is music and theatre, so when ET started to affect how I play guitar, how I held a microphone or how I was able to perform on a stage, I would get frustrated with myself because there was nothing I could do to control it. I got to the point where I would cry every time I went to the neurologist. Every time, he would tell me, “If you do not let your tremors bother you, they will not bother anyone else.” I took this advice and I would try to not let it affect me, but my tremor continued to affect how I viewed myself. I felt as if I was not fit to be a musician because of my condition, and the thought of that was devastating.

At my next doctor’s visit, Dr. Natarajan told me something that completely changed my perspective. He asked me, “If you could trade your ET for any other disorder, would you?” I began to ponder this question. I would not trade it for blindness, deafness, paralysis, amputation or any other physical disability. It was at this moment that I realized how truly blessed I am.

From that point on, I decided that ET is a part of my life, but it cannot dictate who I am as a person. I have made the choice to pursue music despite any difficulties I may face. Although ET has had a great impact on my life, I will continue to push through and face every challenge with a positive attitude.

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

My Desire to Become a Clinical Psychologist Was a ‘Worthy Expedition’

Each semester, the International Essential Tremor Foundation (IETF) awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our spring 2019 scholarship recipients.

By Casey Becker,
Swinburne University

During my first year in a psychology degree, I began to shake and was diagnosed with severe essential tremor. This, understandably, made me depressed, confused and distraught. I immediately sought help from a clinical psychologist, and her contribution to my well-being has confirmed that my desire to become one myself was a worthy expedition. During my second year of college I would find myself zoning out a lot. My memory didn’t seem to be what it once was. Then I started having strange head spins with dreams in them. That’s the only way I know how to describe a temporal lobe epileptic seizure (TLE).

photo of Casey Becker, IETF scholarship recipient 2019

Understanding and accepting that both of these conditions may gradually get worse is a difficult feat and becomes more complex every time I have to let another hobby go or fundamentally change the way I do something in order to account for my tremor or epilepsy. I am a curious and passionate academic, but I also have a creative side. My love for drawing, painting, sewing and playing music have often turned from being a source of comfort to a source of stress. However, I did not give them up. I changed musical instruments. I switched from drawing the painting. I found a keyboard that allowed me to write. And I found new ways to remember things even during seizure clusters. Somehow, I managed to complete my degrees full-time, with a HD average (high distinction).  

By studying the brain, my disorders have turned from a psychological burden into a fascinating first-hand experience of atypical neural function. I picked up every bio-psychology and medicine elective I could, then enrolled in an applied science honours degree. I hope to use my experience as a clinical psychologist and a researcher to help individuals, while contributing to the knowledge that can improve our understanding of psychology.

I am undergoing a Ph.D. in psychology at Swinburne University. I come from a low SES single-parent family. I am a first-generation high school graduate, and the only person in my immediate family to attend college.

Essential Tremor Has Made Me Adaptable and Determined

Each semester, the International Essential Tremor Foundation (IETF) awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our spring 2019 scholarship recipients.

By Brogan Speraw,
Ohio University

Essential tremor has affected me in multiple ways. The first and most significant of these is that it provided me with the determination I have today. My tremors have been a constant struggle in my life. The simple tasks of filling in the bubbles of a test, feeding myself a bowl of soup, and tying my shoes were always a challenge. When I was younger, I was persistently frustrated by my condition until one day my brother told me to approach it like a game. Being the child I was, I refused to lose any game and aspired to find a solution to every conflict thrown in my path. It gave me a new outlook and an inner need to beat my tremor any way I could. Eventually, this “game” became routine, and I began applying it to other facets of my life such as academics, sports and my other extracurricular activities. This strategy evolved into a way of life, fueling me with the motivation to accomplish everything I did, or at the very least, put my best efforts into it.

spring 2019 scholarship winner brogan speraw

Furthermore, my tremors have also given me the skills of adaptability, a strength that has impressed my professors and colleagues alike. When hit with adversity, I find a way to succeed. I attribute that entirely to my tremors and the support of my family. For example, in 2017, my group in the introduction to engineering class was confronted by a sudden problem. Our assignment: an elevator of our own design, built by myself and my team. This was not only our final, but also a competition among teams to see who could lift the most weight up one meter in the shortest amount of time. On the final test day, our elevator was doing wonderfully until the time came for the judging. Our elevator failed twice and we were allotted two additional attempts to both fix our elevator and pass the assignment. On our third attempt, it almost failed again due to a soldering malfunction. To resolve the issue, I simply forced the wires into their proper position. The payload fell for an instant before quickly rising again, resulting in finishing third place for my team and I. This was a prime situation to present my adaptability.

Finally, my tremors have given me an invaluable asset in life: thick skin. This is an important skill for anyone to have, but for someone with any sort of disability in public school systems, this is necessary. The ability to take comments about you and just let them go is vital in my experience. Honestly, it was difficult at times, but I learned that it was easier than attempting to pursue any aggressive retaliation. This skill was mastered through trial and error. By learning to let hurtful people and situations go, I’m glad to state that it has aided me immensely with making and maintaining valuable, honest friendships and relationships.

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Applications are being accepted for fall 2019 scholarships from the IETF.  If you are a current or incoming college student with essential tremor, complete the application on the IETF website. The application deadline is May 1, 2019.

I Can’t Be Rehabilitated from Having ET; But It Gives Me an Advantage to Helping Others

Each semester, the IETF awards four $1,000 college scholarships to students who have essential tremor through its Catherine S. Rice Scholarship Fund. As part of the application process, students are asked to write an essay on the topic, “how essential tremor has affected my life.” The following essay is from one of our spring 2019 scholarship recipients.

By Madison Young,
Arkansas Tech University

I turned 20 last month and read a list of 20 things every 20-year-old should know. Number 17 was “There Is No Roadmap.” That is very true. I can look back now and remember standing at certain crossroads and wondering which way to turn. Different paths have different benefits and obstacles. You can hardly see 20 yards down the path sometimes. As I look back on just a few of my turns, I realize that having essential tremor (ET) has had an impact on the choices I have made in direction, not in a negative way but an impact all the same.

Madison Young, IETF scholarship recipient

Having ET does affect my life in a variety of ways. Some tasks are simply harder than they would be if my hands and arms would just be still. Plus, when the tremors take over my body, I get a little embarrassed because everyone notices, then they try to act as if they didn’t. It seems like there is a polite protocol for noticing something different about other people.

One of the turns ET has led me to make is my field of study in college. I am a rehabilitation science major planning on moving into physical therapy. Unlike people I will eventually treat/help, I can’t be rehabilitated from having ET. But it certainly causes me to relate. It gives me an advantage to helping others over someone who has never had an obstacle to overcome. I understand to some extent what it is like to be viewed as different.

In all of my classes we talk about people with disabilities, and the main point always made is most people have disabilities, but not always visible disabilities. We are all “disabled” in our own way. Some disabilities you notice right away and some you don’t. Being diagnosed with ET at such an early age has helped me learn a lot about human nature. I just want to be able to help people live the most normal lives possible.

Currently there is no cure for ET. I am ok with that. I am at peace with who I am and ET doesn’t define me or what I can accomplish. In my classes, I am learning how to help others reach that point and just deal with the situation in a positive manner. It is an empowering feeling to be able to help someone. And when you are helping someone, and they connect with you because you aren’t perfect either, it makes it all worth it. Yes, having ET has changed my life and my path, but I believe it is for the better.

It has been almost six years since my diagnosis and I can’t help but wonder where I will be at age 26. What will I be doing and how will my tremors have progressed? While there is no roadmap, there is a road seen clearly in hindsight. I hope I always remember to look back at my turns in life that have made the difference.

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Applications are being taken for fall 2019 scholarships from the IETF.  If you are a current or incoming college student with essential tremor, complete the application on the IETF website. The application deadline is May 1, 2019.

Having a Positive Impact on Those Who Struggle with Lifelong Conditions

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 2018 scholarship recipients

 

By Deirdre Maciak,
Student Salem State University
Salem, MA

Essential tremor (ET) has affected me physically and emotionally, and has also played a role in my future career plans. I began noticing ET when I was in middle school, and was officially diagnosed as a sophomore in high school.

Photo of Deirdre Maciak, 2018 scholarship recipientPhysically it has affected me when I work out at the gym, play saxophone in my various school bands, and is worse when I’m tired or stressed out. I have tried a couple of medicines so far to treat it, and am working to determine what the right level of medicine is for me for now.

Emotionally it has affected my confidence level, especially when I realized how noticeable it had become. I sometimes hold off on activities I would like to do because of the ET, but am learning to manage the condition more proactively and look forward to being able to try new treatments in the future.

ET has also impacted my career choice to a degree as well. I am looking to pursue either nursing or biology in college, partly because I want to be able to have a positive impact on others who struggle with lifelong conditions. I also want to have the opportunity to either research new drugs or related treatments that would make the lives of those who deal with these types of conditions better.

I recently learned that a family friend, who is a research scientist, is actually working on a new drug for neurological disorders, which was very exciting. This type of work is intriguing to me.

I am very excited to start my college career this fall. While I know that ET will have some impact on me, I am becoming more confident that it’s a condition that I will be able to manage during these upcoming college years. I hope to both benefit from future ET treatments and, also have the chance to work on them as part of my future career path.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

Educating Others About Invisible Disabilities, Including Essential Tremor

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 2018 scholarship recipients

 

By Megan Hartley,
Student at Florida Southern College

When I was 15, I was diagnosed with essential tremor. In March 2018, my 15-year-old sister was diagnosed with essential tremor. This letter is for her.

You have heard all the negative experiences that have been a part of my diagnosis: the accusations that I stole my grandmother’s handicap because I couldn’t possibly have one of my own; being bullied because I got extra time on exams that I “didn’t need;” and not being able to walk after a long day. People will be cruel because they do not understand.

What I want you to know is that it isn’t something that has to define you or be completely negative; so many positives have come out of it for me. It has allowed me to better understand what it is truly like to have a diversity that no one understands. It has pushed me to try to educate those who do not understand invisible disabilities in a positive way.

In the spring of 2016, I was allowed the opportunity to be on the cover and to speak out about what it is like to have anxiety and essential tremor for the International Essential Tremor Foundation’s magazine, Tremor Talk.

At Florida Southern alone, in my role as a resident advisor, I have been able to design community-wide programs that encourage students to ask questions and to get knowledge about those diversities they do not understand. The series that went on to win community program of the year included invisible disabilities, culture and identity. I have had the opportunity to present at the Florida Resident Advisor Conference and took home an award for my presentation about invisible disabilities inclusion in the residence halls.

Quote about invisible disabilitiesThis semester, I am partnering with other campus organizations to promote invisible disabilities week on campus in October. I have had the opportunity to do multiple projects and papers about disabilities and their relationship to the world around us. You are able to combat the negativity by allowing it to be an education opportunity for those around you.

Overall, what I want you to understand, is that, for me, the positives outweigh the negatives. I believe that essential tremor has allowed me to be a more compassionate person. Though I cannot speak to every diversity, I feel as though I can understand what it is like to have your identity questioned simply because it is not seen from the outside.

Though some days the tremors make it difficult to stand, I will always stand up for those who need it.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

 

‘It’s the Man Who Overcomes Adversity that is the True Champion’

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 2018 scholarship recipients

 

By Robbie Holder,
Georgia Southern University

I do not remember a time when my hands did not noticeably shake. I was diagnosed with essential tremor (ET) at the early age of 14. While I recognized I was not the only Photo of Robert Holder, 2018 IETF Scholarship Recipientperson to experience tremors of this nature, I didn’t know anyone my age who suffered from this diagnosis. My other has ET and her grandmother suffered from it also; therefore, my diagnosis was not unexpected as it is hereditary. Since that time, I have reconciled myself with the knowledge that ET isn’t curable. I have found peace with the fact that I will always have a tremor. I haven’t used my diagnosis as an excuse to quit or avoid certain tasks, but have chosen to work harder in order to succeed.

My mother is an artist and while having a tremor makes it more difficult for her to create art, she doesn’t let it stop her from doing what she loves. She has to intensely focus on the task at hand. She has made adjustments to accomplish daily tasks. Like my mom, I have learned to adapt in order to accomplish tasks that come easily for others. I struggle to open packets, eat with a spoon, peel shrimp, button clothes, brush my teeth and insert contacts. Utilizing both hands, I have more control of my movements.

ET can be frustrating. I enjoy physical activities and working with my hands. My goal is to study exercise science. ET makes it difficult, but not impossible.

I have not let my ET keep me from doing the things I love. I truly believe it’s the little things in life that make a difference. With my family’s help, I built a Little Pantry for my community during my senior year in high school and I continue to run it today. Those in need obtain food and household items without the stigma of being seen as helpless. Others in the community can make a difference by restocking the pantry. Despite the frustrations I encountered during the pantry’s construction, I feel that I have made a difference and continue to do so.

I have been inspired by a quote that I keep close to my heart. It’s by Jock Ewing:

“Any man can win when things go his way. It’s the man who overcomes adversity that is the true champion.”

The challenges I face daily have made an impact on my life. I have to worker harder, persevere when faced with challenges, and find strength from within. These challenges have made me resilient, hard-working and confident. I choose to be strong. I have a desire to succeed and a strong work ethic. I finish what I start and I don’t let anything get in my way.

I know ET will always be a part of my life, but it will not define who I am. I choose to overcome.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

 

Essential Tremor Has Strengthened My Resolve

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 2018 scholarship recipients.

 

By Graham Gaddis,
University of Tennessee

As the sixth child in a family of 16 children I am sometimes overlooked, but if we met for a personal interview you would learn how capable I am.

Photo of Graham Gaddis, IETF Scholarship RecipientIn the shadows and in the quiet, I have found an identity, and much of this identity has developed from facing head-on the difficulties of living with essential tremor (ET). I realize that having ET has actually strengthened my resolve to tackle life’s challenges and achieve my personal goals.

The process of living with ET has also enabled me to focus on my genuine priorities. I don’t have the time or the energy to be pressured to be someone else or simply please someone else. As a result of ET, I have learned to stand in my own skin and really pursue my own interests. For example, I am the fifth kid to go to college in my immediate family. My father, aunt and uncle are physicians. I have three sisters who are registered nurses and my brother is studying engineering. Therefore, most people thought I would enter college in a STEM field (science, technology, engineering, math). But my future dreams include farming and food production. I have chosen to major in a field that is completely new to my family, but that I am sincerely passionate about. I think this boldness to pursue a degree unfamiliar to my large extended family has developed as I found courage dealing with my essential tremor.

It has not been easy to struggle daily to spread peanut butter on my sandwich bread, assemble a bookcase with 80 screws dropping them over and over again, or have to practice, in private, my penmanship so that it would be legible. I don’t really like that I spill a drink if it is too full. These things are not “fun”, but in the scope of the greater things in life I can still do everything that God has called me to do. I can shower those whom I love with kindness. I can contribute to my community and have a legacy of faithfulness. I can be sympathetic to the trials and difficulties others face and help in their time of need.

I know I can walk through the challenges of having essential tremor and I can still find joy in all of the areas of life that really matter.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

Research for Essential Tremor Gives Hope to Young People

By Deirdre Maciak
IETF Scholarship Recipient

I was only 16 years old when I was diagnosed with essential tremor. Up until that point, I don’t think I ever really registered how young I was. I had started driving, going out with my friends without supervision, and doing all the things that are expected of teenagers finding their way in the world. It’s an incredibly careless time in one’s life—there is so much ahead of you that the lines between the past, present and future are blurred.

Photo of Deirdre Maciak, IETF Scholarship WinnerMy main goals were always so clear to me. I wanted to get through high school consistently getting better at playing saxophone, study harder and get better grades, get into nursing school, and come out at the end with my dream job. But, being told that you have a chronic condition, one that won’t go away and will probably only progress over time, will bring even a busy-minded teenager to a halt.

Suddenly I had to reevaluate everything that I wanted in life. My diaphragm was spasming too much to have a good control on my air supply while playing saxophone. My physics class only had stools, and because there was no support, I spent more time trying to control my shaking core than paying attention to the teacher. I had a lot of questions. How am I going to be steady enough to draw blood when I’m a nurse? And, why did this have to happen to me, a 16-year-old girl, before I could achieve any of my dreams?

I’m not the first or last teenager out there whose plans have been derailed in some Quote from Deirdre Maciak about the importance of ET researchcapacity due to essential tremor. But, I am part of a generation of people with the condition who have better access to experimental treatments due to research and new discoveries.

Working with my neurologist, I’ve tried one medicine so far, but the side effects were difficult, so I’m exploring other options and I expect to need some of the new innovations in my lifetime for sure. Knowing that there are options out there to help control the frustrating symptoms has helped me put everything in better perspective.

Today, I follow what’s happening with ET by reading the International Essential Tremor Foundation (IETF) website, and watch what hospitals in my area, such as Brigham and Women’s, are doing with focused ultrasound. I was also excited to learn that a family friend, who is a research scientist, recently starting working for a company that is hoping to release a new drug that would be a big step in helping people with neurological disorders including ET. They hope to know this fall if they receive their next approval – and I am optimistic that it can help me and people of all ages who are dealing with this condition.

I was accepted into nursing school and start this fall! So despite this condition, and maybe also partly because of it, I’ll give it my all with the hope of helping people in general, and possibly those who suffer specifically from lifelong conditions as I do.

I still have a lot of questions. But, the new and ongoing research for ET gives hope to us young people, that even though our conditions may worsen over time, there are also so many ways that modern medicine can help us live our lives normally and we all need to work toward that goal together.

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July is a time with the IETF draws awareness to its many research initiatives: funding research grants, advocating for more research on essential tremor,  recruiting for research studies, and more. Your generosity is the reason the IETF is able to carry out these initiatives and work toward improving the quality of life for every generation living with essential tremor. Help us keep hope alive. Donate today.