What I Love About Dystonia

I have spent a lot of time hating you…wishing you would go away and never come back…praying for a cure that will make you disappear. You are undoubtedly one of the toughest trials of my life. You cause me and my family more pain, angst, fear, anxiety, sleeplessness and stress than anything else in our lives. I cringe just thinking about you being with my kids their whole lives. But, as I sit in the hospital and watch a little girl read her book with her chemo IV bag attached to her, I also feel relief that you are not something else. And I love you for it.

I love that you are not degenerative.  We are lucky that our type of Dystonia will not get worse with time. It is what it is, no more no less. We just need to get to know you better so we can help our boys learn how to compensate for you.

I love that you in no way affect intellect or cognitive development.

I love that you are not life-threatening.

I love that you are not always seen. Your ability to hide yourself means my little boys will be able to escape much of the social stigma attached to disability.

I love that you are not cancer.

I love that you are not resistive to all therapies and treatments.  Treatment is difficult. But, at least we have medicinal and therapeutic options. There are far too many who are not so lucky.

I love that you are not exceedingly rare. While you may be unheard of and fall into the “rare disorder” category, the truth is there’s a big and wonderful Dystonia community out there. We don’t have to go through this alone. We just had to look for others who can relate to us.

I love that you do not work in isolation. Part of me hates that you affect every member of my family. However, the other part of me loves that they all have each other. So many people with rare conditions are all alone, whether at home or out in the world. I love that my boys will always have a place they can come and be just like everyone else. 

I love that you are not 100% constant.  My kids will always have Dystonia and you will never go away. But, you are not there every part of every day.   Unlike other painful conditions and types of Dystonia, you give my kids breaks from your pain. They get to go minutes, hours and sometimes days without suffering. They get opportunities to be normal and free from you. I’m grateful for this.

I love that you are not something so much harder, more painful or even more debilitating. There are countless genetic disorders. Each one is more debilitating than the next. I can’t help but feel we won the genetic lottery that we are not dealing with something else.

Don’t misunderstand me, I don’t want you around and I really don’t like you. I find you vile and irritating. But I do believe we could be dealing with a lot worse. I will continue to spend everyday teaching my little boys how to fight against all that you are.  While I will never love what you are, I will forever be grateful for all that you are not. 


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