Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD and mom to Hazel, age 8, and Rain, age 6. Rain has Duchenne muscular dystrophy. Follow Ivy at her blog, Living Duchenne.

 

Identification

I have rarely been comfortable at the center of anyone's attention.Yet one of the most profound changes wrought on my life by Duchenne has been a tendency to be noticeable. People see me and my family now in a way that I had not experienced before. Strangers offer their visual disapproval at every turn.

 

They stare at my van as we park in the handicap spot. They carefully observe, and judge, whether or not I belong there. Various bystanders now watch me, as they never did before I had the "privilege" of using a designated parking spot. They notice when my son bounds out of the car, eschewing his wheelchair, and independently mounts the curb as though leaping a waist-high hurdle, beaming back at me that he has accomplished the hitherto impossible. Shocked strangers are visibly confused when I calmly walk back alone, perfectly healthy, to my blue placarded van, having wheeled my son to school for the day. How else am I supposed to outload kid, wheels, backpack, and all that gear?, I'd like to know. Thus far, I have not been questioned (I live in a very polite town), but I know that many of our Duchenne friends around the world face frequent confrontation on this issue. Some people even hand out what I like to call "none-of-your-business cards" like the one you can download here.

 

And when we are out on the town, a little train of kid, chair, big sis pushing kid in chair, and me, well, of course, they stare. We are interesting, apparently. Entertaining, even. And when we reach our destination, the toy store, say, and my son slings the breaks on his chair and leaps up out of it to run to the display of little plastic animals? Well, that is downright fascinating, seemingly. We even once had a small child watch these proceedings, turn to his companion, and cheerfully announce in a carrying whisper, "Look, Grandma! A miracle!" And so it is, dear, so it is.

 

Somehow, wherever we go, we find ourselves the focus of somebody's attention. Rain thinks it is because he's famous.

 

Knowing this, I have become hyper aware of my appearance and comportment in the world. Ok, sure, I'm still a mess when I go to the end of my driveway for the morning paper, because a girl has to draw the line somewhere, but I have a strong sense that I am never allowed to be the "mama in pajamas" when I leave my house. I don't have the luxury of anonymity. I know that I will be seen. Sometimes my husband drives the kids to school, or sometimes the kids are even a bit late, because I have this heightened sense that my greasy hair will diminish my son's chances for a "normal" social life.

 

I've come to feel that eccentricities of any kind may not be tolerable. If I write an essay, if I post something on Facebook, that brief literary foray becomes part of my son's permanent record, his public image. If I don't concentrate on the PR work, how on earth will this kid get a date? Perhaps I should have more faith in teenage girls. Perhaps I have an artificially inflated sense of my importance in the world. Delusions of fame, apparently, run in the family. Certainly that is the definition of fame, though, that strangers notice you, recognize you, think they know something about you without ever having had a single conversation with you. Stepping out in public does not make one a public figure, unless, it seems, you step out with a wheelchair.

 

I find all of this stressful. Part of the problem is that this sense of being constantly on public display, a la zoo exhibit, creates a bizarrely post-modern meta landscape in my brain. I find myself wondering what I would do in a given situation if I felt as I imagine "a normal person" might feel given a similar situation. What would the appropriate response be were I the sort of person to whom appropriate responses occurred naturally? I am a stranger in my own mind.

 

The boundaries between my public and my private life have been definitively and distressingly blurred. I am disturbed that Shakespeare's observations on the world being a stage are all too prevalent in my mind. Worse, they are conflated with the notion that we are all performing without the benefit of any rehearsals, full dress or no. I am not at all certain that my script writing is of high enough quality to pass muster. I am not remotely convinced that my acting is anything like authentic. My singing and dancing will most definitely never be nominated for a prestigious statuette award. And, I must say, I am very concerned that my wardrobe department needs a significantly bigger budget.

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Comment by Carol Keskeny on November 5, 2013 at 7:36pm

I have had the same experiences.  The very first time we parked in an handicapped parking space and my son hopped out the van while I was unloading his chair, a woman came up and accosted us.  I went into a big explanation of what was going on, while my son listened.  After the woman left, I told myself, I would NEVER do that again.  I would ignore whatever people said and go on with our business.  It would depress me when store clerks would ask me questions instead of my son, I would always direct them to my son.

I really understand the feeling of having to look nice, even going to the movies.  My husband didn't think it was necessary but I could feel the stares. I was like you, I didn't want my appearance to reflect negatively on my son.

It's such a hard job to care for our kids and our appearances should be the last thing to stress about, but I found it was part of the package.

Thank you so much for addressing this issue!.   

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