When I was in high school I fell in love with a looser, except I didn’t know he was a looser until we broke up and I stepped out of the box and grew up to see what kind of person he really was.  But between the breakup and my heartbreak I spent days, weeks, months, almost years trying to figure out why someone as beautiful and as kind and as funny and talented as he was could  hurt me so bad. I thought he loved really loved me

Amongst my friends (but never around him) I cried and vented and vented and cried. I went weeks without eating properly. My sister had to force me to eat a sandwich. Any update about him I had to tell my friends about it. Even when he and I moved on with other people, I emotionally couldn’t figure out why I wasn’t good enough for him and I talked and talked about it until I began to see my friends pretending to listen.

There is nothing worse or more annoying than a person that obsessively goes on and on and on about something. I mean I get mourning. It’s important to talk about your troubles, it helps with healing and growth, but when is enough enough?

There was this girl in college. I don’t remember why, but she was in a wheel chair, had been most of her life. She had a lot of physical obstacles to overcome physically, but mentally she was sharp as a whip, especially in our advanced French class. Still, not many of us where too happy to work with her during group work. Though most people would have assumed it was because of her disability, on the contrary as smart as she was with her on our team it would have been to our advantage, but there wasn’t a day or an hour that didn’t go by that she didn’t stop Talking about her disabilities. She would always turn a normal fun conversation into something about how hard her disabilities make it for her.

I tried putting myself in her shoes, really not easy to do with so many obstacles she had to over come and I tried to be more patient. I told myself she must be in pain, or maybe no one’s tried to be her friend before or maybe she doesn’t have anyone to talk to so she tells everyone, or maybe she isn’t aware of her obsessive talk about her disability. It would have been nice to know something else about her, something not sad, but it seemed every path down her past or present was depressing. Had I been more mature than maybe I would have realized she just needed a hug, but back then I wasn’t very touchy feely kind of person.

Today, I suffer with this undiagnosed disorder one doctor thinks is Dystonia and all the research I’ve done proves him right. In July a movement disorder specialist should tell me if what my neurologist thinks is true. In the meantime I’ve grown tired of hearing the word dystonia. I am avoiding the online support groups. Everyone is always talking about the medicines they’re taking, the symptoms they’re having, or the terrible pain they’re in accompanied by exhaustion. On occasion there are positive post, but they are rare and few between. I can’t even stand to hear myself talking or writing about it anymore. This is why I haven’t posted in a while. I haven’t posted how my speech was slurred last week and how my muscles locked and my boyfriend kissed me so sweetly to help me relax and hopefully unlock my jaw. It was the sweetest kiss I have ever had and it did help the muscle in my jaw relax for a bit. What wasn’t sweet was how scared his face looked or how I saw tears in his eyes. I felt so terrible for him and for my kids who luckily were upstairs getting ready for bed and so didn’t see it happen, but I know they will someday. What wasn’t sweet is when he realized and said and I secretly thought it, “It’s getting worse”.  Just a few minutes later when I was able to speak normally again I looked at him and asked him for the medicine even though we both knew it was early.

I don’t want to post that. I didn’t want to be that broken heart girl in high school or that girl in the wheel chair from college bringing you down with my sad life. I didn’t want to make you feel like my mom makes me feel when every single time my mom visits me, even on my birthday she tells me about how bad my dad is doing or how one more of my distant cousins or aunts or friend of a friend is dieing or died of some disease. Mom do you have any good news? Please any good news, a joke, a good memory. I see enough bad news on TV with mass shooting and poor babies and children beaten and abused by their own parents.

For a moment I want to pretend everything is ok. I want to feel like everything is okay. I don’t want to be a Debbie Downer and bring others down with my sad news, there is enough of that already. Everybody has problems, everyone is going to die of something, everyone is going to hurt from something.

You know what’s good in my life, I have 3 very smart beautiful healthy children who make me laugh and love me so much they don’t underestimate my abilities despite my disabilities but when my pain kicks in they don’t treat me any differently or act any differently. They still squabble like little turds and are driving me insane but when it matters, when they know it’s a bad day, my oldest helps with dinner, my middle one brings me water and a blanket, my youngest hugs me and loves me. My boyfriend is beyond amazing for what he’s done for me. Have I mentioned that he has saved my life a couple of times, but he never lets me quit and he doesn’t feel sorry for me even though he knows how bad my symptoms can get.

My mom, Debbie Downer that she can be has also been the reason why I am such a strong woman, determined, and a good mom. My siblings….I could go on.

I know talking about dystonia is important. I know it’s important to get the sad and the pain off our shoulders so we can move on. I know it’s important to make people more aware of it not only so they understand (though really it takes one to know one) and also through awareness hopefully one day a cure, but what I also want everyone down in the dumps and obsessively talking about it that we need to take a break from the obsession. We need to give our loved ones a break from the dystonia obsession. We need to stop being such Debbie Downers and not let Dystonia Win. Dystonia is not who we are and though it may feel like it’s taken over, like it’s in control, it isn’t. Don’t let dystonia win. Don’t let it alienate your body, mind and spirit. Don’t let dystonia dehumanize you. Take a moment to look at what is wonderful about you, what is amazing about your life, to show the world that your are a person.

I know it’s hard. I say all this knowing it is hard and the worse it gets the harder it will be to be positive, but maybe as a support group we should have more jokes.