2013 — Wish for a Moment of Clarity

This time of the year I usually write about the year past and make predic­tions for the year(s) to come. But not this time. Enough said on the state of our media, the future and all that jazz.

One of the main events to yours truly this year was the London Olympics. I wanted to do the parao­lympics as well, but it did not work out.

Let that be the bridge to the story I am about to share. A dear friend of mine — Johanna Eiramo — from our days in the Helsinki University wrote something in the Facebook the other day which really touched me. I have asked her permission to quote it here in full. It may well be the most poignant New Years Wish I’ve ever read. 

Thank you Johanna for writing and sharing this. 

“A long story before my new year’s wish to everyone.

As some of you know, we have a nine-year-old daughter with learning disabi­lities and a severe speech impairment. She’s been a slow learner and a slow developer from the day she was born. But she’s a lively, happy girl. She will approach you and strike up a conver­sation even if you don’t know sign language. Most conver­sa­tions are more like a game of charades. She will sign and utter letters and syllables, you will guess what she’s going on about.Every May for the past five years we’ve visited the Learning Disability Center for the Helsinki University Hospital. She goes through two days straight of testing by neurop­syc­ho­lo­gists, speech thera­pists, occupa­tional thera­pists, neuro­lo­gists asking you to draw, count, jump, say this, pronounce that, skip here, decipher this and sign that.After last May’s visit, her diagnosis was changed from learning disabi­lities and slowness of overall development to mild mental disability. The testing over, we now have a permanent status, albeit without a reason why.

It wasn’t a surprise, but it was a shock. As the world seemed to implode, I could hear doors closing on the corridor of my daughter’s life. I could see lights dim. I saw loneliness, frustration and depen­dence. I cried. I wanted to run away. Beam me up, Scotty. Right now!

But our day-to-day life didn’t change at all, of course. She’s as lovable and infuriating as any child on any day. And once we got over the initial shock, we took on the next challenge: how would we tell her? I’m a strong believer in telling it how it is. How do you tell a nine-year-old with a healthy self-esteem and a strong lust for life that she has barriers other kids don’t have. That you will be called names that will stigmatize you no matter how wonderful and brave you are.

The moment for the Big Speech arrived on the eve of the 400-meter men’s relay during the London Olympics. My daughter and I were reading about the South African runner Oscar Pistorius. The Blade Runner. A double amputee from a young age, he would be the first amputee to race in the Olympics with able compe­titors. There was a picture of him (by Andy Hooper), running next to a little girl with the same kinds of blades. My daughter and I looked at the picture and I told her that just like Pistorius’ legs hadn’t formed properly in his childhood, she too had grown diffe­rently and that it would seem that she would be different always. His disability was physical, while hers was neuro­lo­gical. Hidden away, somewhere in her brain. That she would need therapy for a long time, speaking would probably always be hard for her and there would be some things she would not be able to learn or do. And I used the scary word, I told her she was disabled.

Me: How do you feel about that?
Her (signing): I don’t know… [long pause] I guess it’s ok…. No, I don’t mind.

And she keeps looking at the picture of Pistorius and the girl.

And then she turns to me and asks me:
Does this mean I can take part in the Paralympics? That’s what I want to do!

Can you see how I got it all wrong from the beginning?! She was ready to excel where she could with what she had. I was ready to mourn an imagined future.

And so for this New Year that has just begun, dear friends, I wish you a moment of clarity, like my daughter had, to see yourself as you are and see the possi­bi­lities that lie around you.

Be honest but don’t be modest!”