Saturday, September 18, 2010

Dual Citizenship

I was explaining to my therapist what it felt like to go to the FPWR conference last weekend and what a different spot I'm in now than I was a year ago. I can enter and leave Prader-Willi Land and resume life on Normal Land as I please. Prader-Willi Land doesn't have to be my world, the only place I'll ever live and be stuck and just wonder about what Normal Land is still like and if I would fit in there.

She came up with the analogy of me having a "dual citizenship" and that Prader-Willi Land is just another piece of the puzzle. I'm still learning the culture and the language, but I've picked up enough that when I come back to Normal Land, I have a bit of an accent. I feel rusty, like the cultural habits of Normal Land are there and accessible with a hop on the old proverbial bicycle. It comes back to me.

And yet, there are cultural habits of Prader-Willi Land that I've picked up and have to use if I'm going to navigate this place that once was the only place I knew. When I go into the grocery store, I wonder how many more times I'll be able to come with both (soon all three!) of my kids instead of having to leave Dean at home. I'll put Dean in the shopping cart and consider it more than just a seat, but a therapeutic device that will help him build trunk control as we navigate the aisles of the store. I'll make my turns carefully, not wanting to do anything too abrupt because a low-tone body won't adjust quickly enough to stay upright. I'll speak for him when strangers ask him to talk or wave on command, explaining that he needs more time or whatever other thing rolls out of my mouth.

I'll explain to caregivers that my son can live here in Normal Land, but he's a natural citizen of Prader-Willi Land. There are a series of accommodations he'll need to thrive here. I'll walk through public places and some won't notice that we have hints of another culture about us - they'll think we've always lived here. Others will notice something different and not quite understand. They might not even know which questions to ask about what they observe and so the cultural barriers will cause confusion and possibly hurt. It's no one's fault, we just have a different perspective - how would they know what it's like to live in Prader-Willi Land?

And from time to time, we'll go for a trip back to Prader-Willi Land like we did last weekend and we'll be able to relax into the company we find. We don't have to explain our customs because the others know it. We know what it's like to hold dual citizenship and so the customs of both cultures are familiar and relatable to us. It's a breath of fresh air. We remember the day we found out that we'd be forced to be citizens of a new home, a home we did not choose, and we remember life before that. We help the newcomers who also didn't choose this destination to navigate the really difficult culture shock that starts the second you find you have to go - sometimes earlier. It gets easier, but there are still some times that it's really hard and we long for the days when Normal Land was all we knew. But we find comfort in knowing that we understand one another.

Then we all go back and resume life in Normal Land. Those who visit most often while we're in Prader-Willi Land will understand more of the customs there, but they haven't spent the time that we have. There's only so much we can try to communicate. But really, truly, the gratitude for the perspective of holding citizenship in both places is remarkable.


Kevin said...

So, is this a more useful analogy than Holland and Italy?

Ali Foley Shenk said...

I think it is. In that poem, the Kingsley ships the reader off to Holland and they never get to experience what it's like to come back, to reintegrate back into the original destination. So you DO get to the go to Italy, just after a long stay in Holland. Unless you're getting sent off to a leper colony, I think it's more than just a one-way shipment to Holland.

Diana said...

I think this is a super helpful analogy and can be used in many settings. And helps explain so many of the confusions of "crossing cultures" (all that InterVarsity training comes rushing back!) I like, I like. Thanks for sharing.

And the pics on the next post are fabulous! Glad you're finding ways to stay cool. It has been a hot one here too.

Ali Foley Shenk said...

Glad you found it helpful. Come to think of it, does remind me of some of the IV training materials and cross cultures and all that. :)

I think the most exciting part of it, as I mentioned in my response above, was that there's a way to live in both places. You don't get banished forever to the foreign land. I knew there had to be a way to have both. :)

Miss you guys!
A :)