Hi there. My name is Janice, and though I am visibly different from other people, I am still happy. Figuring that you might want to know how I managed happiness in the face of my difference, I’d like to share my story with you.

I grew up with something odd called essential tremor (ET). ET is a disorder that involves shaking, usually of the hands, though it can involve the head and neck, the face, jaw, tongue— why even the voice. Some people have the tremor in their trunk, while fewer have it in their legs and feet. What all this shaking has in common is that it is NOT caused by any other problemms like medications or any outside influence. It is strictly neurological. My dad has it, and so do I. Growing up with this brought me my fair share (and more) of pain and sadness, but, you know what, it brought me a lot of pride, too, and now a passion to make a positive difference to others who didn’t ask for ET, can’t get rid of it, and who are struggling to achieve happiness like I did.

I lived the life of an only child in a sheltered and loving home. Starting school when I was only four, I took off to kindergarten that first day with both joy and fear. My mother came with me, of course, and, with butterflies in my stomach, I started this new adventure.

Here’s what went through my mind when I saw the room, and my classmates: “I am so excited. Boy, look at all these kids and all this stuff. They talk and play rather than sit and do nothing like my dolls. We are going to have a snack and drink. I already know I’m going to love school. I am one of the big kids now.

“Hey, cookies with sprinkles and orange drink------WOW. We all get in line. It’s my turn. This Lady gives me a little paper plate with two cookies and tells me to get a cup of drink from the next lady. I have my cookies in one hand and reach out to take my drink. Oops---my hand shakes some and the drink gets on my cookies. That’s OK. They are just a little wet. OH NO! Now my other hand shakes a little and the paper plate lets a cookie fall off. I’m at the table and sit down beside new friends. I take a drink.”

One of the girls asks me why I’m still a baby. “You hold your cup with both hands like my little brother Baby James.” She laughs at me and tells me to get a baby bottle. Nobody else says anything mean but they stare at me.

“I can’t help it. Makes my hands shake more when people watch me. I’ll just tell them I’m full and then it will be OK. Good there’s Mom. I can leave. I’m not sure about this. Maybe I can stay away from the mean girl and the other ones will forget.

“I’ve been in school a couple of weeks now. I HATE SCHOOL!!!!! That mean girl still makes fun of me. We are learning to write our ABC’s. I know my ABC’s and my numbers. I knew them before I came to school. I try my best but my A’s and H’s look awful. I try to hold my pencil tight so it can’t shake but my A’s look squiggly. My teacher tells me if I don’t quit day dreaming and get my work done faster she is going to call my Mother. I do not daydream. I try to go as fast as I can but my letters all are squiggly. “

The teacher called my mother, and of course she came right to school. My teacher told her that though I seem bright, all I do is day dream. “Rushes through her work to get it done.” My mother explained that my Father has ET, and that I do, too. It was pretty good to hear Mom say that she’d like to tell the teacher a few things about ET. The teacher’s face turned red. After the visit, she told me that from now on, she’d like me to do as much work as I can in school, and whatever I haven’t finished, why I could take that home and finish it there. What a relief!

So that’s a sample of my time in school. I did have some bad times. I cried a lot…but I learned to laugh a lot, too. I figured out that if I did my work at home where no one was staring at me I did better. So I got the assignments from my teachers and did as much as I could the day before class. I took a tape recorder to school at a time before anyone ever started using them. I just couldn’t take notes fast enough. My taking these notes turned out to my advantage because I was able to retain more than the other students. My father said the best way to show someone I’m ‘normal’ is to make better grades than they do. As a rule, I did just that. I managed to stay on the A-B honor roll throughout school, and was I ever proud!

One very precious thing that essential tremor has given me is a love of people…for who they are, and not for what they have.

OK, I figure that when you have any kind of ‘unpopular’ difference, you can do two things. Feel sorry for yourself or fight harder and make a positive difference in your life and in the lives of others.

My father fought harder (remember, he had ET before I did) and became a plant manager of a very large textile mill. It is that very same mill where I found my life work…and passion. A career in Human Resources was perfect. I could help others to be productive by looking at their work, not the clothes they wore, the way they looked, or the manner in which they spoke.

I had a hard time in the beginning because I was judged by my tremor…before I even opened my mouth. I thought about this, learned from it, and, essentially, beat everyone to the punch! For example, I went into an interview, shook hands and then informed the Human Resource Director that I had essential tremor. I made it known that ET did not affect my work. I was employed on the second interview, and my career took off!

To tell you the truth, ET turned out to be an asset, since I can form an impression of individuals based on their reactions to me. Now here’s my passion:

I share my trials and tribulations with essential tremor for two reasons. 1st to let you know that a child remembers. I never want another child to have to overcome the barriers that I confronted. And 2nd , most importantly, to bring awareness to the teachers and administrators about this disorder. I want them to learn that children with ET are just as competent…or even more so, as other students, and that they have as much a need for acceptance and inclusion as anyone else.

ET is the most common movement disorder in the world, with millions of people affected. The toll that it takes on those who have it must be acknowledged and attended to…that is my goal. Since ET forces creativity, I bet I can figure out some novel ways to get the word out!

Thanks for visiting my page. Hope you'll drop me a line! Jan

Come visit the ET organizational websiteto learn more about this odd disorder!


 More  adult stories
The frog ponds
 The site map

Joan Fleitas, Ed.D., R.N.

Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: March 4, 2005