When you have a disability, it’s often so hard to describe it. Mine are what they call “invisible disabilities”. With the blindness, unless I’m moving around with my cane or searching around the dinner table, it’s not easily noticeable. The MS is next to impossible to tell I’m sick. I talk a lot about spoons, and I know I’ve linked The Spoon Theory before, but there it is again, in case you missed it. (Screen reader users, that link is to a pdf that loads automatically for Alex, so hopefully it works)
This morning I received another cool description on one of my email lists. This one is talking about having a child with a disability, but it can easily be thought of as a good description for me and my MS and blindness, or any disability. So here is the passage from the email:
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
I really like that. Sure, when I was 27 and younger, my dreams were about the figurative Italy. I was young and healthy and had just gotten sober and life was incredible. Then at 27, the diagnosis of MS came with the loss of vision in my right eye, and I was on my way to the figurative Holland, kicking and screaming.
Then I started adjusting to Holland and understanding how to ration my spoons and thought about going back to Italy once again, when, at 29, the left eye went blind too. There I was, stuck in Holland, really kicking and screaming this time, having a harder time rationing spoons since learning how to be blind took them all much faster. I hated Holland. I was supposed to be in Italy.
But as time went by, I started to like Holland a little. I got to learn so much, and started meeting really cool people I never would have met in Italy.
Now I love Holland. It’s sure different then what I had planned, but it sure is cool in oh so many ways. Are there times I wish I were in Italy? Sure. Are there times I hope I might get to Italy? Sure. But just for today, I can accept that Holland is where I’m supposed to be.
I’m also part dutch, so maybe that helps 😉