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My name is Janice. I am going to tell you why I am different and how to be different and still be happy. I am now 52 years old. This is the life I had as a child with Essential Tremors. Some of this is sad and still hurts me, others makes me proud that I am different.
I will tell you about school and a child’s point of view with ET. I will also tell you of the hurt that the school system can inflict on a child that is different in a way that is not considered “that serious”.
I started school when I had just turned 4 due to the month I was born in. I lived the life of an only child in a sheltered and loving home.
I went to school the first day with joy and fear both.
The first day of school of course my Mother took me. I am so excited, being an only child didn't give me a lot of friends except the ones at church. Boy look at all these kids and all this stuff. Mom is filling out a bunch of papers, all the Mothers are. We are supposed to look around and play with each other. I start playing with another group of girls and it is so much fun. They talk and play rather than sit and do nothing like my dolls. I am having so much fun and we are going to have 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 and there is this girl and her name is the same as mine, that’s great we can be sisters. It’s my turn, this Lady give 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 opps-----my hand shakes some and drink gets on my cookies. This lady is a grouch she tells me to eat them any way. That’s OK they are just a little wet. I am very careful walking to the table so I won’t get any drink on the floor. OH NO! Now my other hand shakes a little and the paper plate lets a cookie fall off—it’s the dry one. I’m at the table and sit down beside Jan. I take a bite of my cookie –not so good with orange drink on it, but Mom said to use best manners so I’ll eat it anyway. I want to taste my drink so I take a drink . One of the other girls ask me why I’m still a baby, you hold your cup with both hands like my little brother Baby Janice. I told her I didn’t want to spill anymore she laughs at me and tells me to get a bottle-- baby. OK, I don’t like her, she has ugly hair. No body else says anything mean but they stare at me. I can’t help it makes my hand shake more when people watch me. I’ll just tell them I’m full and then it will be OK but that taste of drink was real good and the cookie is half dry. No, I don’t want to do anything everyone is staring.
Good there’s Mom I can leave -, I’m not sure about this and the hateful woman is my teacher Mrs. Gamble and she is old. 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!!!!! Mrs. Gamble is mean to me. Mom taught me how to read some and I know my ABC’s and my numbers. I knew them before I came to school. I am in the Redbird reading group and it is the one with the hardest books. That mean girl still makes fun of me and I told Mrs. Gamble but she told me not to tattle and sit down. Her name is Marie and she is not in any of my groups and I’m glad!! The girl that has the same name as me is in all my groups and we are best friends, she is real smart and her work always looks so neat. We are learning to write our ABC’s the way you are suppose to. I try my best but my A’s and H’s look awful, I’m trying to hold my pencil tight so it can’t shake but my A’s always look squiggly, Mrs. Gamble told me if I didn’t quit day dreaming and get my work done faster she is going to change my group. I DO NOT daydream. I’m trying to go as fast as I can but if I rush my letters all are squiggly. Mrs. Gamble is standing right behind me, she takes my hand and guides it, and hey my letters are pretty. When she leaves they squiggle again. I know how I can stay in Jan’s writing group. I ask her if she wants me to take her paper to the desk. She said OK. I stop to get a drink and at a work table I make two lines on her last name initial and it looks like my name, now take the eraser and erase the two lines off my paper. It worked! I switched our papers! When I lay the papers on Mrs. Gamble’ desk I put mine on top. She tells me “much better, see how neat you can be when you really try”. It’s time to go home. I go to my room and just lie on my bed and cry, I just remembered that taking someone else’s work is cheating. That is one of the worst things you can do. God doesn’t like it! Will he be mad at me too? What am I going to do? I don’t need to worry when I get to school the next day Mrs. Gamble takes my arm and tells Jan to be in charge and everybody study their spelling words. She is really mad, cause she is hurting my arm. Oh NO! The priniciples office. I am in trouble Mrs. Gamble could tell where I had erased part of my last initial. She tells the principal that I am bright but all I do is day dream and then slop through my work to hurry and get it done. The principal calls my Mother. I have to sit there till she gets there. The principal tells me to sit still and quit playing with my hands, I’m not playing with my hands, I’m SCARED. My mother comes in and her eyes are red, I made her cry, I CHEATED. Now God is mad at me too if my Mom is. My Mother explains that my Father has tremors and I do too. The principal ask Mom how much he drinks and why would I have them. Oh, the principal is in trouble, Mom is mad. She tells me to go wait in the hall I want to stay. Mom never gets mad but when she does even Daddy sits there and doesn’t say a word. I’m in the hall and I can hear my Mother talking, she is using her mad voice, she doesn’t yell but it is a different kind of voice. I don’t hear the principal, after a little bit Mrs. Gamble comes to the office and I can hear Mom tell her “ and I would like a few words with you too”. It’s pretty good to hear Mom telling Mrs. Gamble that she has a few things to tell her----boy is she going to get it!
Mom comes out of the office and gives me a hug, she’ll see me after school and we will talk about it--------boy am I going to get it!
Mrs. Gamble and the principal call me in now I’ll get a paddling I know. Mrs. Gamble is still mad she must be her face is red. She is really looking at me mad. She tells me that I will do my work as much as I can and to take the part I don’t get done home and finish it. It better look neater than it has been. After that she really doesn’t like me she makes me be last in line all the time and I can’t go to the bathroom when I ask I have to wait. The work that I don’t get finished I take home and have to do as soon as I get there. My answers are always right but Mrs. Gamble always writes “try to be neater on your papers”. I HATE SCHOOL.
The other kids find out and make fun of me at recess, Jan and two other girls play with me. I just don’t like being me. What is wrong with Me?
This was a sample of my time in school. I don’t give up easy and find out if I can make the teacher laugh, it’s a lot easier. I do have some bad times really bad and I cry a lot but I learn to laugh a lot. I figure out that if I do my work at home where no one is staring at me I can do better so I get the assignments from my teachers and do as much as I can the day before class. I get along with the other students by making fun of myself before they can. The ones I go to school with all my life don’t pay any attention to my tremors for the most part. The only time I really want to die is when I have to give a book report or stand in front of the class. I do my best shaking all over. The ones that I look and see smiling I know are going to tease me but not mean. There are a lot that look at me like they feel so sorry for me. I know those will never have anything to do with me and that hurts. What hurts the worst are the ones who just look disgusted like I’m a freak and those are the ones that usually call me a freak or shaky lady, just pick a hateful name and I get called it one time or another. They sometimes stand in a group and laugh when I walk by. That really hurts. I never eat lunch at school, that is something I never figured out how to not embarrass myself with. I get mad too but my Father said the best way to show someone I’m normal is to make better grades than they do, and as a rule I do. I manage to stay on the A-B honor roll. I think this is as much through anger as brains, I just work harder. One thing that Essential Tremors has given me that is very precious to me is the fact I love people for what they are, not what they have or who their parents are. I do so want to go into medicine. You must remember that I am 52, at that times women only became nurses or were thought to be really weird---------I sure didn’t need that.
I searched for ways to help other people because you can do two things ----fold down and feel sorry for yourself or fight harder and make a difference. My Father fought harder and became a Plant Manager of a very large textile mill and that is where I found out what to do with my career. No, not Plant Manager. Human Resources, perfect, I could help others, be productive, make decent money and where ever I worked look at people’s overall work and work ethetics.
I had one heck of a time in school, if I had a lecture class I took a tape recorder before anyone ever started taking them. I just couldn’t take notes fast enough, then I could go back to the dorm and listen to it again without the frenzy of trying to take notes and correct anything I got incorrect, plus it turned out to be an advantage because I retained more of the lecture than the other students who just went in did their thing and left. I’m no genius but I kept a decent grade point average for two reasons 1st I was determined to be a liberated female and support my self and never get married.
Be like Mary Tyler Moore. 2nd most important, if my average dropped below what my father told me I had to keep I knew the money stopped-no questions ask. I made it through school pretty well had some fun got my heart broke a couple times, broke a few too. Just a collage student. I had to work harder than most and I played just as hard as any too. I graduated in the top half of my class--------half not top ten.
Then I was out in the real world got my standard navy blue interview suit and hit the job market. I had a hard time in the beginning because I was judged by my tremor before I opened my mouth. I though about this and decided to try taking away any impression before it was made. I went into an interview, shook hands and then informed the HR director that I had Essential Tremors, that it did not affect my work and had been an asset to me in the past on judging personalities by their reaction. That worked like a charm I was employed on the second interview after I beat them to the gun. Plus I appeared to be very professional and spunky. I know I hate that word but when your 5’2” and weigh 104 tops –spunky fits.
My career was off and so was my marriage to a person who had been a friend for years but we never thought of dating. Don’t know what happened but we got married on Feb 29th. I never do things like other people after all I’m Different. I have two grown children who are successful in their own right. Between you and me, I wondered if they would be in bread lines sometimes. I also have six grand children 5 are with us and one is with God.
Over the years my tremors have progressed and I had to leave the field I loved. I was ask not to leave by the President of the company but I felt I wasn’t doing as good a job as should be done and it was due to my tremors, but it beats a life insurance pay off.
I have worked in other less demanding jobs in the last 10 years wanting to stay in the work force, but my tremors became so bad that even with medication no one can even read my name when I write it. I am in the process of filing for disability----------I also have some other medical problems.
I bared my hurts that I so clearly remember for two reasons. I have Grandchildren with ET, I have done this to them and I know the guilt is not logical in my mind,but the guilt in my heart is something I must live with everyday. I know methods of teaching have changed and no teacher would be as bad as my first teacher. The most important reason is to bring awareness to the teaching profession and to the public schools that children with ET are just as smart or smarter, ET will make you think creatively. I don’t want my Grandchildren to be labeled and hurt as I was. I don’t want them to live with the thought of ET in the back of their minds with each thing they are about to do or accomplishment they are about to make. The children with ET have some special needs not extra physical ones so much but teachers and administrators must be educated in the largest numbered Movement Disorder in the world. How can tens of millions known cases and probably at least double undiagnosed cases be so obscure to so many people? I plan on making sure every school system is knowledgeable on this disorder. I have the future of at least one of my Grandchildren at stake and how many other children do I own this to. The answer is Millions.