Real RA: Talking with Your Hands.

There is a legend in my father's family. A long, long time ago, a Spanish mercenary supposedly had his way with a female ancestor. Equally supposedly, this explains why families with two children always have one with dark hair and one with blonde hair. Writing it down like that makes it look completely nonsensical, but it's a good story and I've never been one to let the facts get in the way of a good story. In my immediate family, we also used this legend to explain why my dad talked with his hands much more than is the norm in Denmark. Naturally, since my sister and I grew up in a household where gestures supplemented speech — combined with whatever diluted drops of Spanish mercenary blood still runs in our veins — we also talk with our hands a lot.

When RA has its way with you, damage in the joints can lead to deformity. I never liked the word deformity — it sounds so Quasimodo-like. Gnarled isn't much better, so let's skip right over attempts to find the proper word for joints that don't quite look like the norm. In my case, RA has wrecked every joint. I have, leading to contractures, fusions and some pretty odd-looking body parts.

Not surprisingly, it’s also affected how I move, because contractures, fusions and — okay, I'll say it — deformities mean you don't move the way others do. In my head, I am as graceful as a dancer, but in reality, I move like a bird with small, jerky movements.

Through Show Us Your Hands! I've heard many stories of people who have hidden their hands for years and now, for the first time, has shared photos of their hands with the world (it's one of the many reasons I love the work we do). I never hid. Maybe it's because my hands have looked odd since I was a child, so I was used to it. And maybe it's because I got JRA when I was four and started using a wheelchair at 16, so I’ve never been able to pass for "normal." Sometimes, RA being really visible can be a blessing.

And this is where the blood of the Spanish mercenary enters the picture. Because I talk as much with my hands as the rest of my family. It does look rather different, though. Aforementioned contractures, fusions and okay, deformities mean that my gestures are somewhat garbled versions of the original. 

I don't know if others need to know me for a while before they understand my gestures without thinking about it, but regardless of how they get there, they get there. My family and friends instinctively understand that when I point, they have to look at the direction of my hand more than my finger. They automatically translate my brief leaning forward while doing a small, truncated wave with my right hand into a sweeping 18th-century flourish of a bow. Etc.

Which brings me to today's illustrative point.

Gestures take many forms. Some we use in more formal professional occasions, some are reserved for private moments. Some can be used anywhere and around any one, others are not quite polite. And there's a particular gesture which is used to indicate a suggestion that someone should take a long walk off a short pier that I'm want to use whenever The Boy gets to be too much of a smartass. Most people call it flipping the bird. Not in my house.

In my house, we call it The Flipper.

So, between the bird-like movements and the gesture, does that mean I'm a penguin?

(that great ring was a gift from my friend JJ when the manuscript to The Book was finished)

All photos in this post by The Boy.