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.)

But.

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

Me: "Hey...it'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.

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..."

See?

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.

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...

   

...room 667 which meant I missed...

                                                


...by 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. 

 

For this girl

Day after tomorrow I fly to San Diego to the American Humanist Association national conference. I'll be part of  the Richard Dawkins Foundation for Reason and Science panel discussing  "How Religious Fundamentalism Harms Children." 

The others on the panel are Sean Faircloth, Janet Heimlich and Katherine Stewart, all amazing writers and advocates for the separation of church and state, especially when it comes to child medical maltreatment and proselytizing in school. Richard Dawkins will moderate.

It's an incredible honor and opportunity to have been invited to join them. It's a chance to literally speak for kids who have no voice against the pain and shame that can result from  the behavior of their indoctrinated parents. The recent case of a Pennsylvania couple charged with the death of a second of their children from choosing to pray rather than seek medical treatment--in other words, fatal neglect--has brought the issue front and center again.  http://www.huffingtonpost.com/2013/05/24/herbert-catherine-schaible-bail-hearing_n_3330907.html I hate that this is what it takes. But we have to keep talking. We need to educate the public and get the state religious exemptions from medical treatment changed.

I survived untreated osteomyelitis at thirteen (and fourteen and fifteen) because my Christian Science parents and practitioner chose "spiritual treatment" for me.  I lost the use of my knee forever during those years, and six years ago I had my leg amputated when it jeopardized my health. No surgeons were willing to attempt replacing the fused joint. One said he never saw cases like this except in elderly patients who'd had the disease before antibiotics were available. 

But my fused, scarred, bent and eventually amputated leg is just part of the fallout. My life changed from one day to the next when I was thirteen. Not long after my fourteenth birthday, I was in too much pain to get out of bed--for ten solid months. My leg ran with pus day and night. The pain drove me to the point, one summer night, where the only thing I wanted was to die. But again, I had no choice. I lived. And, as happens in post-traumatic stress disorder, my brain changed its own chemistry. It warped into a state to attempt to manage my unreasonable situation, just as it would in battle or as a prisoner of war. These changes are visible on brain scans of people with PTSD. 

But for twenty years more, I just thought I was crazy. My moods could plunge without warning into suicidal despair. My whole being thrummed with anxiety almost 24/7. I lived in fear. I was terrible at showing up on time in a schedule for school, for a job. The only routine that soothed me was taking care of my horses. By the time I was in my thirties, having flashbacks and attacks of claustrophobia that prevented me from working, I really believed I was insane. Being diagnosed with PTSD and learning to manage it have changed my life.

What you need to understand is that part of me never got out of that room. Like a political prisoner, the mattress--the small room--the walls are still under and around me. Right now I'm keyed up in an excited way about this trip, but it reminds me of the stress I lived with  for decades. And it brings the resonance of that fourteen-year-old girl closer.

The hardest thing I've had to come to terms with about that time is her innocence. The most difficult memories are the ones of being in bed only being able to lie on my back or left side, never moving my leg, unable to stand the slightest jiggling of the mattress--and yet being sure I would be healed. The days grew long and hot, the leaves of the hickory outside shaded my window. I could smell the fresh-cut grass and hear my friends outside. All I needed was to have that single moment of understanding, enlightenment that would let me wake from the mortal dream of having an infected leg. I would sit up; the bandages would drop from my leg; I'd stand up and feel the rug under my bare feet. Then I'd run all the way to the barn and hug my horse. I could imagine it vividly. It was just out of reach.

It never happened. I survived and that girl faded into cynicism and shame. She was angry and confused, imploding rather than exploding, for the next twenty years.

How many kids experience that transformation to a greater or lesser extent? Maybe not in similar conditions physically, but emotionally? Refusing to validate a child's understanding of the world--of pain or health--of her personal realm of a body--derails any hope of a normal transition  to adulthood.

I'm able to speak in San Diego because my own daughters have taught me I deserve unconditional love and freedom from pain as much as they do.

I'm going to speak for the girl I was at fourteen, the girl in bed who desperately tried to scrape up a miracle that adults brutally, ignorantly told her was within reach. It's an honor to be asked. It's a tribute to her human grit, the will to live that kept her alive when she was denied any reasonable alternative.

This was the single time a picture was taken of me in bed in 1976. Yes, that's a pet mouse on my hat. Cheers, Liz.

See you on the flip side.  

Shopping with Liz: Dress For Success!

"Beware of all enterprises that require new clothes."  Part of a quote by Thoreau, a fellow who probably dressed the way I have all my life. I've found that horsemen and writers can mostly get by in jeans & T-shirts. Although this was not true when I was in England: I taught, rode, even cleaned stalls wearing  breeches, boots, shirt, tie & sweater or jacket.

(Thoreau trivia: Having grown up in Lexington, Massachusetts, as a kid I swam at Walden pond. I remember it not as Henry David's inspirational hangout but a nice swimming spot remarkable for the crayfish we used to catch . This will be a bonus point on the final.)

The countdown is on for my trip to San Diego at the end of this month: the American Humanist Association's national conference. I'll be part of a panel from the Richard Dawkins Foundation for Reason and Science along with Janet Heimlich, Katherine Stewart and Sean Faircloth, moderated by Richard Dawkins himself. Talk about your enterprises requiring new clothes...

My daughters bailed like rats fleeing a sinking ship. Twenty-three said, "I think you need to find someone closer to your age to help you."

And when I asked yesterday if Thirteen would go shopping with me: "No, mom. This will end badly."

Huh. I went by myself today. This was a preemptive strike. I have a tentative date with a couple fashionistas who, yes, are my age, thank you very much, kids.

Let me explain how this is a venture so far outside my Comfort Zone as to be off the map. I tried to explain to my wonderful fashionista ladies last weekend: I have issues. Yes, these are the same issues that qualify me as poster child (or "Plucky Survivor" as I like to think of myself). They have to do with my body-image; they go WAY back. Not a few are directly about shopping. To be specific, changing booths, or as I think of them, the Tenth Circle of Hell.

When I was fifteen or so, I was able to stand up and step away from my wheelchair on wooden crutches. My bone infection had been "vanquished"; my family, Christian Science practitioner and I believed it had been HEALED! (Read: outlasted by a Plucky Child Survivor. But I didn't  know this until twenty years later.) 

This "healing" left me on crutches for eighteen months. Eventually my destroyed knee fused itself solid and I could walk on it. Meanwhile, I was a stranger in my post-puberty body. I'd been wiry, fast and strong at thirteen when the swelling in my leg shut down my life; now I was heavier, lame, depressed. I'd missed two years of school. My friends mostly shunned me. I detested my slow, awkward body. I tried to deny its existence as Christian Science dictated.

Meanwhile, the first place I had to go? The mall. Where I came face to face with my reflection in a fitting room mirror.

Shock? Panic attack? Despair? Damn right. I went home & curled in bed in a fetal position. I despised myself, my body, my failure to be healed as I'd been told I could. Lay there a couple days. Until I had to move...because I could. Had to get up. grab my crutches, get a lift to the barn so I could groom my crazy temperamental horse. Because I could move.

I struggled with my body for years. I had an eating disorder during high school, and binged and fasted as I watched the bathroom scale numbers like a Magic Eight ball that would determine my happiness on any given day. I used to walk compulsive laps through my house in the crazed need to force my rigid knee to bend or straighten. I stopped these behaviors on my seventeenth birthday when I threw away my last crutch--and gave in to the depression I've fought ever since. 

When friends look at me as though I'm just being stubborn, I feel twinges of that panic. Because it is so flipping complicated. And I have worked so damn hard to get to this point where I can express myself coherently. When I can write the hard truth of my life. When I might finally (finally!!) be recognized as a surviving voice for all the kids who didn't.

So this afternoon I drove to Ithaca. I paced myself; I was patient with myself; I cut myself a lot of slack when I was faced with the tubby middle-aged chick in the mirror. I forgave myself for being human. I was grateful to be human. Hell, a survivor! Alive, with the chance to represent others. And to speak at a conference.

At the checkout, the cashier said, "Ooh, these are nice."

I felt encouraged.  Yeah, this is unsettling, but it's a sign of my progress that I can describe it. Bring on the fashionistas.

But...cue George Thoroughgood, too. It's true, my preference: I shop alone...with nobody else...

Facebookers, forgive me for I have trolled

...and it's been...well...never, since my last confession. We didn't do that (ahem) stuff in Christian Science. Sure, we were into guilt & shame, but not hell. Or at least not a PLACE, other than the MORTAL UNIVERSE, which of course was only a construct of our own  MORTAL MINDS.

Excuse me. Religion does bring out the caps-lock in all of us, doesn't it?

But yeah, I did some trolling. Too tempting. A friend posted a link to the CHRISTIAN SCIENCE YouTube channel which is rife with such offerings.

(The videos average between a few hundred and a  couple thousand hits. Let me just brag that Sean Faircloth's Interview Formerly Appearing on YouTube of Liz Heywood, Plucky CS Survivor, nabbed something upward of 15,000 hits in the year before it was axed in a copyright dispute between Richard Dawkins & a nameless Disgruntled Former Employee.) 

The CS channel 137 videos and 810 subscribers. Which is to say, the 40,000-odd remaining church members are too old to figure out the InterWebs.

No, I know, I know, they want to SPREAD THE INSPIRED WORD OF WHATSHERNAME. 

(Un-caps-lock.) The CS series of some new, some older videos, is called "Lives Lived." The videos seem to run about a minute or two apiece while earnest folk of all ages & hairstyles talk about praying away their latest migraine, brain tumor, or whathaveyou. The comments, I quickly noticed, were disabled...

...on most of them.

OK, so what do you think I did? Yeah, that's what I did. Kept it short & sweet: Lives Lived, Legs Lost. Believe what you want; take your kids to a doctor. Along those lines. With my little leg/prosthesis/horse legs icon.     :-)  

Found a couple of those earnest I-was-HEALED clips to spruce up with my comments before I had to go get my daughter from track practice. Alas. So much fun, so little time.

By the time I was back the comments were disabled.     :-(     Stephanie Miller (progressive radio talk show host) would say, "See, this is why we can't have nice things!!"

But I bet she wouldn't say it in all caps.      ;-D

Crashing into spring

...in a dying HP pc, hence my unplanned blog-cation. J 

But have no fear! I am back to thrash my way through cyberspace and coax my wheezing and uncooperative machine despite its countless mock-deaths until the gears, transistors, baler-twine or whatever the hell is inside it decides to run a while. A new-to-me computer is waiting in the wings! Stay tuned.

 

In the meantime, I’ve single-handedly vanquished winter, depression, mud season & cold temperatures here at Holy Crow Farm, or at least outlasted them. The daffodils are finally blooming after sprouting from the ground & then holding their breath for two months. There’s even enough sparse green grass on my woodsy hilltop that I let the horses graze awhile today. They have to be eased into grass or they’ll eat themselves sick. Horses feel about new grass the way I do about White Lightning ice cream.

And the daffodils finally outnumber the little plastic fence insulators I nail to trees and posts to keep the electric fence hot. (I accidentally tested the electric fence myself the other day. Just thought I'd mention it works.) The insulators are exactly the same yellow as daffodils and during the Grey Months, I take heart at the bright spots of color in a landscape of neutral shades. In the early spring, I’m disappointed whenever I race towards yellow on the ground hoping for an early bloom only to find it’s a forgotten plastic piece.

 

But hey, it’s always an encouraging sign. Sooner or later, the flowers take the hint and burst into bloom.