Sunday, June 23, 2013

C, leg? :-D

This is  follow-up (of sorts) to another post about What-if, as in what if I could bend and straighten my left leg with weight on it... Last time I did that was 1975. Then it was stiff and painful; then it was useless and painful; then it was stiff and bent and pain-free for thirty-odd years while I stomped on it until my foot/ankle/hip/back couldn't take it. 

Now that my left knee is hydraulic, it looks hi-tech, but (sadly) is only interesting as that kind of mechanical joint...called a...(my engineer-cousin spotted & correctly named this type of hinge the first time we walked into the prosthetist's office...but now the word is gone. Sorry, Scotty.) 

Let me just say that (a la Larry Craig) I Love My Knee. Let the record show that I have NO COMPLAINTS (mostly. Ahem.) about the hydraulic leg my insurance has deemed fit to pay for. This type of knee (the **Otto Bock 3R60**!! msrp around $5K) allows me to tramp around in fine form from woods to airports to oh, say for instance, the Richard Dawkins Foundation's panel at the American Humanist Association's national conference a few weeks ago where (let the record show) I did not fall down even while dancing on the party boat. (Do those Humanists know how to have a good time or what??) 

However. My happy hydraulic knee folds like a cheap suit, like a tent, like a map, like a hinge, all at the speed of gravity when bent with my weight on it. Which brings me to How Liz Clicked On A Facebook Button. Long story short: "You too can TRY a COMPUTERIZED LEG!!"

The computerized legs have a little brain that makes something like 50 to 100 decisions a second depending on how it figures its amputee is moving. It's programmed with a Bluetooth and a laptop, and apparently takes a certain amount of getting used to.

Of course I wouldn't even be allowed to try one and I knew it: my insurance wouldn't tolerate it. My insurance (through the ever-loving State of New York) is Computerized-knee Intolerant, & breaks out in hives at the very thought, let alone the $40-90K (yes K, 40 to 90 THOUSAND DOLLARS price tag.) Sure enough, as the Facebook Offer-ed steps played themselves out, my prosthetist (who is a wonderful person) called to say A) It couldn't happen due to some secret anti-alliance with Prosthetic Powers That Be, BUT 2) he was going to facilitate it happening so that I could try a (hush!!)...computerized leg anyway.

More long story short: I met him and the salesman in an undisclosed location a couple months ago, where (cue sound effects: WHHEEEEOOOoooo...) said leg refused to work. (See "CHECK ENGINE LIGHT" stayed on.)


Week or so ago I was back, and tried out the...computerized knee... Conversation went something like this: 

Me: "'s slow! It's holding me back!...wait...What do you mean, Walk normally?? I haven't walked normally since 1975!!..OK, I won't look in the mirror, I'll look up...YES I'm holding on to the parallel bars...Hey, cool!...whoops...But that was a good step! Yeah! See? It's figuring me out...or vice versa..." Etc.

Fifteen or twenty minutes & some adjustments later: "Hey! Cool! Yeah, it's got some resistance!...Yeah, I can walk backwards...and sideways!...Look at this, step over step!!"

By then I was making plans on skipping out the door so I could call that wonderful guy in my life & going dancing, oh yeah. And by then the prosthetist & the sales rep were saying, "OK--hold it, that's good--now take it easy--EASY!!"

And that's when I realized I was just shy of a certain emotional (for me) movie clip of a certain fictional paralyzed character turned loose in a tall, blue body with perfect legs. And I heard myself say, "No, I'm OK, this is great!!"

Well. At the end of forty-five minutes I spent back moving back and forth between the parallel bars like a shark in a small tank, my prosthetist said, "It'll be rough when you have to put your old knee on again." He and the sales rep agreed I'd adapted extremely quickly to the...see-leg...

Because, yeah. I saw.

I knew it could be hard going back, like the way bouncing on a trampoline makes the ground seem especially unforgiving. Maybe I was hoping to be disappointed, so I could say, Ah, I don't want one of those stupid knees anyway...

Not true: **WANT**!!!! as I've learned to say from Facebook, that fiendish thing that got me into this mess, if-you-want-it-it-will-come, I can only hope, whatever, I don't care. It was an amazing three-quarters of an hour. And to everyone who commented (or just responded in spirit!) to my blue-feet post about that reaction to the movie: psssst....the science is working.

What we need is the right to avail ourselves of it. Because I had a glimpse. And it was amazing.

Wednesday, June 19, 2013

What we went through

Since I started writing, blogging, speaking, and just plain making noise about how trying to pray my way out of a bone disease as a child turned my life upside down, people have responded with compassion, often sharing their own stories of childhood emotional, physical and sexual abuse. Some are the result of religious maltreatment, some not.

I feel privileged to inspire this trust. I remember when I couldn't think about my own experience, much less tell it to someone I'd just met. 

However, the person telling me his or her story often ends by saying, "Of course, it wasn't as bad as what you went through."

And I say "No! Stop! Childhood trauma isn't something you can measure or weigh or calculate on a graph. It's about something being too much for a child to handle. It doesn't have to lead to physical scars or emotional acting-out. Any avoidable trauma is unacceptable."

Here I go with another horse analogy, but bear with me:

My biggest epiphany with horses came only about a dozen years ago. It dawned on me that something startling, like a grouse flapping out of the bushes, can be taken in stride by one young horse, while another comes completely unglued. This sounds obvious, but what was new was the understanding that I had to accept the nervous horse's right to his reactivity. I had to respect that for whatever reason, a certain colt might be disturbed in certain situations. I had to find a way to increase his confidence in his "herd leader" (me) because I could no longer bring myself to strap harsh bits and tie-downs on the animal to forcibly control his instinctive (and dangerous) behavior to protect himself, usually by bolting home.

I stopped labeling sensitive horses "difficult" or "bad." One of the most sensitive and complicated Arabians I ever worked with could have been a disaster--but her owner worked through every single situation with consistent patience and discipline. As a result, this mare was one of the most focused, grounded and talented horses I've ever met.

I digress.

My point is that too much for any child to cope with can be upsetting at a deep level. Traumatic. Religious doctrine can blind parents, relatives and teachers to the damage that occurs. I

'm reading a book called The Good News Club: the Christian Right's Stealth Attack on America's Children by Katherine Stewart, a novelist, journalist, and all-around wonderful woman I met on the panel at the AHA conference in San Diego. "Good News Clubs" are religious after-school programs thinly-veiled as fun bible clubs. They are organized by the Child Evangelism Fellowship, a national group that makes no bones about its goal: to form clubs in every school in the US and equip kids from 4 to 14 years old to convert ("save") their classmates--often with threats: "If you don't believe in Jesus, you are going to hell."

If someone says this to me now, I laugh. But when I was a kid, classmates would scare me by trying to find an injury scenario that would force me to a hospital because I went to "the church where they don't go to doctors." (Church of Christ, Scientist: Christian Science.) 

Imagine four- and five-year-olds advising their peers about hell, a real place hotter than the pan they burned themselves on, a place where you'll burn forever. I would call this traumatic. It's the equivalent of some acquaintance saying to me, "What's that spot on the back of your neck? Have you had that checked out?" 

So I ask a friend, who says, "I don't see anything."

Then I meet the first person again, maybe with another of her friends, and they both insist, "That thing on your neck is getting bigger. I know a doctor who's great with cancerous lesions..."


There's enough anxiety in the world already. Kids don't need more fear and false responsibility piled on at a time when they should be growing confident in their place in society. Any extra fear is too much. It took me more than thirty years to begin to admit the truth of my own life, and most of the last twenty to tell my story at a national conference. My prosthetic leg is an eye-catcher, but I will continue to say this: emotional damage is worst of all and far too many of us have experienced it. Any trauma is too much. We're all in this together.

Check out Katherine's book. It's a fascinating read.

Saturday, June 8, 2013

My excellent adventure: a photo essay

Lunch with Katherine, Richard, Jan & others after the panel.
I had a fabulous time at the American Humanist Association conference last weekend. I met so many terrific people it made my head spin. I'll be writing more about it, but I wanted to put some pictures up.

My new friend Katherine Stewart, author of The Good News Club: The Christian Right's Stealth Assault on America's Children & panel speaker. Also a lot of fun to party with.

Dancing badly with Matt Harding of Where the Hell is Matt? fame

View from my room balcony... 667 which meant I missed...

                                         one room. Damn!

Sean Faircloth, Director of Strategy of RDFRS & great guy.
Janet Heimlich, author, activist & friend extraordinaire
Some bought, some brought, all lugged through the airports...but ALL signed!!

Life is good in San Diego
Foreground: Seth Asser, great friend & MD
Amazing. Do I look dazzled? What an honor.


I was accosted by a Christian Science practitioner in Old San Diego. Fortunately I was able to out run him.
The link to the panel I was on: RDFRS panel, AHA conference 2013.