Ivy's son, Rain
Last year, Ivy and I agreed to write a co-blog. I would introduce Ivy’s or wrap something around what she writes. It was selfish really. I love reading and in my next lifetime, am considering a writing career or maybe a singing career, I have not decided. Don’t laugh. I realize there are a number of things that I will need to include in the ‘ask’, in order to prepare for the next lifetime: things like a talent for storytelling and creativity, a singing voice (my brother Jack asked that I not sing ever… not even Happy Birthday), and that natural musical ability that comes from somewhere deep in the soul.
But in this lifetime, I love reading – especially Ivy’s blogs about Rain, about home, about life, about hope. And while I realized that my writing skills are different than Ivy’s, I love her use of words, her definitions, and the wonderful way she explains the use of a certain word, giving each word a specific purpose and place in our lives. I have long admired her sense of self, her selflessness, and her creativity. She has the ability to make sense of a world in which she is both a new member and one with history. I love how she is able to capture our imagination and talk about things and situations we all have in common, as if we are all sitting around the fireplace, barefoot and comfortable; the room filled with the smell of warm chocolate chip cookies and fresh flowers; sharing our stories, our worries, our dreams. In so many ways, I see Ivy as the teacher, the person guiding the discussion, a visual image of the therapeutic dose of hope.
I agree that Duchenne is not to be framed as a disease (see Ivy’s blog which follows). Our children are not sick in the sense of feeling awful, lying on the couch with symptoms of flu or of some contagious disease. Rather Duchenne is a misprint of the genetic map for muscle which results in weakness of muscle – all of it – skeletal, smooth, and cardiac. Our sons need assistance (some more, some less) depending on the degree to which their muscles have responded and interpreted the misprint. Granted, it is no small misprint, but Duchenne is better represented as a condition or a disorder. It makes it no less serious, but perhaps more understandable, or even somehow gentler, especially when explaining the term to our sons and daughters.
I could not say the word ‘dying’ in reference to my sons. That word rattled around my brain once Duchenne entered my home. But I just could not form the word, would not form that word, especially not around Chris and Patrick. One day, long ago, one of Patrick’s friends, Johnny asked me about an article he read about Duchenne. He commented that the article said Chris and Patrick were dying. He looked at me, tears in his eyes, and said ‘I didn’t know they were sick.’ I closed my eyes, fighting back tears as well, and realized how much I loved my children’s friends, how much I took for granted, the way they understood Duchenne. I loved the fact that they knew Duchenne was a part of Chris and Patrick’s lives, an unwelcome participant for sure, but they refused to allow Duchenne to interfere or interrupt their lives.
Duchenne is a GIANT word to be sure. It crashes into our homes, our hearts, and changes to some degree the map of the life that was supposed to be. But it does not change our sons. They are exactly who they should be.
And our collective energy is spent around End(ing)Duchenne: to accelerate treatments, to do whatever is necessary to ensure that they have a toolbox at their disposal (a fistful of prescriptions, capable physicians, and local resources). To give them a future – the opportunity to grow into middle age and beyond.
Thank you Ivy! If there is anyone in the world I would like to write a book, it is you.
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.
Sometimes the way in which we define a word can change our whole perspective on life. Without resorting to the dictionary or the internet, how do you define Duchenne? Is it a disease or a disability?
The word "disability" implies for me a chronic condition, either lifelong or acquired, which cannot be eliminated, only compensated for. A disability is part of a person's identity. It is a thing that you live with, a thing you work around but do not escape. It is integral to the person who has it; it's in our deepest layers of being, literally in the very makeup of our bodies. A disability is a different way of doing things. It is a different way of moving in the world, or thinking, or functioning, or feeling. It is something that contributes to what makes you special and unique. A disability is something to be confronted, manipulated, dealt with, but ultimately, accepted.
To my mind, a disease is something else entirely. A disease is something that happens to you. A disease means that something has gone wrong. We have been attacked from the outside. When you have a disease, you're sick. People say to you, "you're not looking yourself today, sweetie. You'd better go lie down and I'll bring you some tea." A disease has symptoms that make you feel bad. When you're sick, people send you flowers and get well cards, and then you do get well and you're fine again, just like you were before you got sick. A disease is something that, if you do the right things, will someday go away. It is a transient overlay on top of the self, something to be transcended and vanquished. A disease is something from which to be recovered. A disease is meant to be cured.
To me, Duchenne is a disability. There is no separation between my son and Duchenne. There was no "before Duchenne" for Rain. Not only was he born this way, he has been this way since my egg developed in my womb before I was born. In fact, Rain's body is functioning perfectly according to the set of instructions that he has in his unique DNA. It's just that his DNA is a tiny bit different from the other boys in our neighborhood. There's nothing wrong with him when you compare him only to himself, rather than comparing him to other people. And who wants to be compared to other people? It's not Rain's fault that he has Duchenne. It isn't something that happened to him. He didn't contract it. It isn't contagious. Duchenne is a part of our family history, just like brown eyes and dimples. Just like myopia and crooked teeth. Maybe Rain will need to compensate for some of his genetic heritage by wearing eyeglasses when he's older. Maybe he'll need a wheelchair and a lift and a special van and an IEP.
These are ways to compensate for parts of us that we would find more convenient if assisted. None of this is meant to change fundamentally who we are. Rather, these compensatory devices exist merely to make our challenges easier to cope with. I love my glasses and I am very grateful to be able to see things but when I take my glasses off I'm still me. Putting my glasses on does not restore me to a previous self that existed before my eyes went blurry. Rain's wheelchair gives him a lift when he needs one but it doesn't take away his Duchenne.
This is not to say that I don't hope for a cure for Duchenne. I do. But when I think "cure," I'm not thinking of a magic pill that will make Duchenne disappear forever. Perhaps I lack imagination. Rather, I am hoping for a wonderful toolbox, a drug and assistive technology regime that will keep our boys on their feet, moving around, hearts beating and lungs working easily, hugging their families, enjoying middle age and beyond. I'm hoping that someday, when a kid gets his new diagnosis, which will always happen just because of the nature of genes and life on earth, that his family will be given some information on local accessibility resources and fistful of prescriptions. His family will know that, with careful maintenance, this chronic condition can be mitigated and life can go on, maybe not in exactly the way it did before, but with limited disruption, for a long time. Whether Duchenne is ultimately a disease or a disability, our boys, perfect just the way they are, deserve nothing less.
Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.
What's your perspective?
How do you define Duchenne? Share your thoughts in the comments!
Pat Furlong, Founding President, CEO
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