This morning, I had to fill out a form for a rebate. I had just taken a walk. Sometimes I find that my ET is worse after exercise, especially in my hands. I like to rest a little before I start with tasks. I began filling in the letters in the little squares on the form. It was challenging for me today. I couldn’t read some of the letters I had written myself. My intuition told me to go down to the lobby of my apartment building to ask the receptionist to help me.
“Can you do me a favor?” I asked. “You know I will,” she answered with a smile. I asked her if she had some white out so I could correct some letters on the page I was filling out. She handed it to me and I started to shake. “Do you want me to do it for you?” she asked. “Sure,” I gratefully answered. I explained to her that I have Essential Tremor, a condition I have had since I was a child. I asked her if she remembered Katharine Hepburn whose head and voice shook. Just like Michael J. Fox is to Parkinson’s, I’ve found it helps to bring up a celebrity when explaining what ET is.
It took me a long time to get over the embarrassment of having ET. It seemed like the more I discussed it with others, the better I began to feel. The underlying shame began to dissipate. As a support group leader, I have found that I really do teach what I need to reinforce in myself. One lady in my Florida group said to me that before she came to the group she never told anyone about her ET. She happily explained that now she tells everyone and feels so free to be herself. The same lady said she realizes that she is increasing awareness of ET with everyone she opens up to.
I remember one time I was getting a rental car after a long flight. I asked for help in filling out the form because I was tired and my hands were shaking. After explaining to the man that I had ET, he actually decided to upgrade my car. “I think my favorite aunt had what you have. She was so nice but we just thought shaking was part of her.” I told him about a cousin I have who kept it a secret for years until I began talking about it. She too kept her physical and emotional pain to herself until she cried and said, “It isn’t my fault, is it?” I said no and gave her a hug.
As a counselor, I studied the book of diagnoses, the DSM, when getting my Master’s. As I was learning about different conditions, I noticed that tremor was mentioned in the book. Along with a short description, it said that people with tremor can suffer from “Social Phobia”. I could certainly relate to the feeling of wanting to hide from people because of my tremor. I have talked to some people who actually stay home instead of attending social events because of their tremor.
I felt so much closer to my friend in the office when I shared my secret today. She shared her secret about how she had lost a lot of weight, but still sees herself as fat. I reassured her that it takes time to really feel the change inside. I used to feel different than others and could relate to a sense of isolation with my condition, ET. After developing healthy habits, it took revealing my story and trusting others to become more human.
Joan Marie Barringer
HopeNet Board Member