I started blogging about my illness by referring to it as a journey. It’s more of a kidnapping, as I did not choose this path but rather it chose me. Thus, I now refer to it as This Odyssey. I do have choices – no to suffer, to be happy, and now to share this blog with others.
So I have been through four stereotaxic cryosurgeries. That is, I have had brain cells frozen in order to halt this disease – commonly referred to as Dystonia, which describes some symptoms but gives no idea of the extent to which it causes pain and twisting of muscles.
Dystonia can be local, this is the most common form. It might affect the jaw, making chewing difficult, it might affect a foot or ankle, a hand, or the neck. Black women get it mostly in the leg below the knee and I read black men don’t get it at all. I don’t know about Asian races, but the type I have is the most severe, affecting a hemisphere, in my case the left, and is the type that Ashkenazi Jews have if they should develop it. This suggests that the disease is mutated by DNA, genetic makeup, although no history of it need appear in previous generations. Certainly there is no history in my family, on either side and my daughter is rude with health, an accomplished dancer, and she represented her school in cross country, 4×400 relay, 800 metres and 1500 metres.
I was very athletic in my childhood and youth. I wanted to pursue running, although I preferred sprint. In truth, I ran for the sheer pleasure of it, like a horse galloping. I would run at any opportunity. In fact, I unofficially beat a county champion after this disease had begun to appear. It was thought I had ‘hysteria’ as no cause could be found for the symptoms that were then apparent.