I can’t remember the last time that I gave someone a great big exuberant hug or got one. I can’t remember caresses, being held close or engaging in that enthusiastic wrist holding handshake. I can’t remember group dancing, or even being held close on the dance floor. Well, I can, but I won’t let myself, because it makes me too sad.
Since I got dystonia, I can’t do a lot of things that I used to do, and people can’t touch me in the ways they’d like; hugging, holding, squeezing.
But that doesn’t mean that I can’t be loved.
Let me explain;
The other day, as I was getting Botox, I screamed out as the needles went in on the left side of my head, particularly around the trigeminal nerve and jaw. The neck and shoulder hurt as well. ” My whole left side hurts,” I said to the doctor. He tried to distract me by joking. ” I could have Kim, ( the nurse) start singing. She’s always breaking out in song from some musical.” She laughed and said, ” Sure, what do want to hear?” My husband, Dan, who was sitting in a chair across from me said, ” Why don’t you sing something from, ” Left Side Story.” I smiled, and chuckled. He’s good at that, when things get tough.
Make us laugh. If just for a moment.
I can’t physically do the things I wish I could I do, like running the vacuum or scrubbing the floor.
Be our bodies. Do for us what we no can longer do.
The old standbys still apply, people in chronic pain still like pretty things.
Show us you care. Bring us flowers, or a gift bag of something wonderful to make us feel that you still have lovely feelings for us.
And speaking of feelings…
Write us a love letter, send a friendship card, or just write an old fashioned letter reminding us of how much we mean to you.
Just because we have dystonia, we’re not dead. We’re still here, and we’re lonely a lot.
Include us. We miss your visits, phone calls and invitations.
It takes a lot courage to live with dystonia. It takes a lot more courage to keep being strong when your loved ones walk away because they are ignorant about your condition. Which brings me to the biggest one…
Believe us. Dystonia is a very painful neurological movement disorder. There are many forms of dystonia. Ask us what kind of dystonia we live with everyday. Educate yourself about dystonia. Ask us to recommend a book about dystonia. There are several online that are quite good. Go to a website like DMRF.org or http://www.dystonia.org.uk. Join or come to a support group for friends or families of people with dystonia. Write “dystonia” in your search engine box and start reading. Watch YouTube videos. Watch a documentary or news report. We will be happy to help you learn about all the complexities of dystonia in all its many forms, but we’ll be happy if you just read enough to help make our lives a little easier.
You’ll find our options are limited and the research is too, so look into supporting us in finding a treatment of something more than just symptoms. Oh, and a cure would be nice.