Monday, December 23, 2013

Frightening the faithful

I follow various amputee groups on facebook. Sometimes the posts drift into territory that can be taken religiously, or that causes people to proclaim their faith. The other day  I saw this: 

Well, I've found my brain functions better since I stopped believing the more bizarre out-of-control events of my life (or ALL the events of my life) are Meant to Be and more Wtf-Random, like the bone infection I got at age thirteen which was treated with only prayer and led eventually to my becoming an amputee. 

And while people on the amputee facebook page commented things like "God leads those who love Him and do His will," I thought I'd stick up for the secular folks and mention that His business of being unwilling to heal amputees (or even take care of kids forced to pray for their lives) really sucks. No, not even that strong.

I said this:

"Since religious "treatment" in childhood led to my amputation, I'm happier with Chance instead of fate. The odds are actually in our favor." (Smiley face.)

A friend made a supportive comment.

Other than that, the conversation stepped over my smiley-faced, wrecked-by-religion body and walked on. Amen!

Well, speaking for myself, my sanity started to return twenty years ago when I grasped the idea that my family's blind faith put my brain and body in this predicament, and that Nature/Chance/human grit and will were what got me through. Yes, it's true: I started thumbing my nose at the idea of "God." And guess what? I haven't been struck by lightning. 

But I thought about this. I realized the effect I have on people sometimes. I understand that I am scary.

I don't mean this in my usual fear-inducing way. Yes, I made "happy" faces at a baby in a diner a few years ago and frightened her into a screaming, crying lather which brought my daughters to tears as well. That was probably my 'do-rag, the thousand-yard stare I come by honestly, and all the wear & tear on my face from too many years of clean living when I drove tractors in the sun. I have to watch it when I try to charm babies now. My charisma is often mistaken for fiendish, diabolical plans. (Sad face.)

I scare faithful people in a different way. Here I am, an amputee: Someone MISSING A LIMB FOR GOD'S SAKE!!! What can POSSIBLY BE WORSE in this life??? NOTHING!!!

Right? An amputee...and I don't believe in god. Don't believe there is a Plan. Don't believe in an afterlife when I could get my leg back and frolic with the other faithful...

It makes me like a horse with no fear of the whip. (I don't subscribe to training horses based on that standard anymore, but it's a good analogy.) I've seen everything religion has to offer. I staked my life on it as a young teenager. I survived because humans are tough. So there.

Now I strip my emotional life naked in my talks. I walk audiences with me through that pain, despair and excruciating growth to this place of fearlessness. I claim it. What have you got, religion? God? Hell? Damnation?

I understand why they step over me in those conversations, talk to each other, don't break eye contact. I would too if I were still religious. If I lived by the Rules.

Alas. Screw that. I'm not afraid anymore. 

What else you got?  (Smiley face.)

Happy Solstice, Merry Christmas, Joyous Festivus. Thank Zeus the days are getting longer, my YA novel is almost done, and I've discovered the Penguin Cafe Orchestra. If you're curious, try the sample below. Tell them Liz sent you. (Winky face.)

Penguin Cafe Orchestra: Organum 

Sunday, December 8, 2013

Revisiting rebellion

The more I change, the more I stay the same. I still have dreams some nights that I'm back in high school (sometimes a teenager, sometimes an adult) arguing that I cannot jump through the hoops necessary to graduate. Back then, the hoops were represented by gym credits. (I didn't even take gym at the time because of my fused knee.)

Beware. Life is full of hidden gym credits.

I was laid off my part-time office job at a local small business a couple months ago. This was no surprise, as the friends I worked for had told me about upcoming changes. They knew I was doing more traveling & writing, a time-investment in future paid work. Plus I'd be eligible for unemployment benefits.


I drove to Workforce first thing Ithaca Friday morning as part of The Deal to keep receiving my $91/week.  The similarities to certain trips to guidance counselors when the ship of my high school education was sinking were not lost on me. But I felt much more able to handle it. 

I was supposed to bring a resume. Ahem. I've never had a resume. I almost made one for the sheer entertainment value of listing my jobs: movie theatre ticket & candy sales, McDonalds fryer, boarding stable manager, riding camp counselor, cleaner-of-barns-full of cows, horses, goats, sheep, & all types of poultry. Exercise rider at a small time track. Standardbred groom at ditto. Barista, nursery worker (potting plants), bookkeeper at a feed mill. Owner-operator of a riding lesson/horse training stable. 

There's more, but enough time wasted. Which was my point: I've wanted to be a published writer since I was approximately six years old, and thanks to life's little curiosities, a mere forty-something years later I'm closer than I've ever been--as well as closing in on a career as a speaker. I have something of a "platform" online, which is critical as well as being the equivalent of a writer's & speaker's resume. All I was hoping for was a few months of my ninety-one dollars a week benefits to go with the rest of my scrimping & saving & child support.

Alas. The hoops are still with me. And I jump through them no better than back in Lexington High in 1979. These took the form of faithfully-kept job search records and applications for full-time minimum wage ($7.25/hr) jobs I  1) didn't want  2) couldn't keep due to my brain's resistance & claustrophobia  3) probably couldn't do physically for an 8-hr shift without falling down a time or two (I did clean a dozen stalls this weekend, but in a couple hours, and not without falling, though softly)  and 4) couldn't make a real living at.

And in the case of the aspiring entrepreneur hoping to soon be self-employed, who declines to job- and/or tail-chase in favor of full-time self-investment?

Forget it. Working on a career of self-employment that doesn't include a certain list of programs, education, courses and boxes-checked is a no-no. Rack up those hours looking for work, or forget unemployment.

Hello attitude, my old friend. You've come to save me once again.

I was polite. I expressed civil dismay (and my counselor privately agreed with me, which was more support than I ever found back in school) and took my leave.

Lately, I've felt that my inner teenager is disgusted with who I've become in middle age:  hesitant to ride, slower, weaker, OLDER...  But driving home on Friday, she was fist-bumping me and cheering me on. It's good to know I'm still living up to her expectations. 

Onwards. And may the hoops be ever in your favor, which is to say, bypassed altogether.

Saturday, November 16, 2013

Have voice, will travel

I am tempted to always wear my SANE name tag
in case there is doubt regarding my sanity.
I'm not a seasoned traveler yet. But I'm not bland anymore.

In the last four weeks I've been to Connecticut, Texas and Massachusetts to share my story and speak out against religious medical neglect of children. It's been a trip not only in terms of flying & driving, but in the amazing variety of wonderful people I've met every single place I've been.

October 19 was the Secular Assembly for the North East's first annual conference (SANE) at the University of New Haven, CT.  Speakers included Jessica Alquist, David Silverman, Sikivu Hutchinson, Dennis Himes, Barry Kosmin, David Niose...and (ahem) me. It was the first time I've launched into a solo speaking gig, printing out directions (yes I got lost, but it wasn't Map quest's fault) & heading out in my Nissan pickup fondly known as the Final Frontier.

I was excited and optimistic even before the bald eagle flew across the highway in front of me. I love coincidences that look like Signs. 

November 8 was the Child-Friendly Faith Project's first annual conference CFF in Austin, Texas. I was part of a  survivors panel discussion which included Bethany Brittain, Jaime Romo  and Joel Engelman, moderated by Steve Hassan.

With Sam Brower

Other speakers included Sam Brower (who sat next to me at supper & described his investigative work that led to Warren Jeffs' capture and conviction) and Rita Swan: my hero, mentor and friend who has led me into this world where my voice is increasingly heard as one of the ones who got away. 

With Rita Swan of CHILD Inc. My hero!

I also met Linda Martin the night her story broke on surviving the horrors of the Followers of Christ church.   KATU  This woman's strength and determination are amazing. Keep an eye on this reporter & KATU's coverage. This will be as big as the Warren Jeffs case.

With Steve Hassan, survivor of the
Moonies. (At the start of our
survivor panel discussion, I think
 he should have raised his hand
and said, "For immunity! Survivors
ready? GO!" the TV show...)

I love my Sean Faircloth Fist of Emphasis

I admit I was a little...braced...about the Child-Friendly Faith conference: this is a mix of religious and secular activists seeking to protect children above all religious traditions. The conference's title was "Can Faith Be Made Child-friendly?"  (Before-hand, I honestly had my doubts as to whether we could even find common ground at the conference, let alone elsewhere.) I was wrong. This was another dynamic mix of the last group I'd have bet would inspire me, including a rabbi and a Baptist minister among others.

I did my part

With Austin Dacey in Austin Texas
Yes, there's a joke there somewhere. I think it was on me. Having been raised in an impractical and passively religious family, it was powerful to hear women and--especially--men form a verbal front line to protect kids. I was honored and humbled to be surprised.

Thirty-odd hours after I drove home from the airport (in the middle of the night) I was off to Massachusetts and the Greater Worcester Humanists. (It's pronounced Wuss-ta.) Worcester Another terrific group, a lot of great questions, and dinner with a childhood friend I hadn't seen since eighth grade when I stopped going to school because my leg was so painful. 

With a new friend in Worcester...and a childhood friend
I hadn't seen since before my bone disease. Love ya,
It's been a bungee-jump of faith in myself and human beings, something like those South Pacific islanders who tie vines to their ankles & throw themselves off towers.  Telling my story is like stripping down to raw emotion and showing scars more graphic than the one from 31 staples where my left leg was. But my story isn't any more important than anyone's. And when I tell it, we can recognize this common history aand connect with each other.  

And this week? I'm speaking Thursday night, November 21, 2013 to the New York City Atheists. It happens to be the eve of the day that I call the last (possibly best) day of my childhood.  NYC Atheists I can't wait.

So remember: The lint roller is your friend. The grande margarita you order in Austin will be the size of a goldfish bowl. And only agree to let a flight attendant check your carry-on when they pry it from your cold dead fingers.

Greater Worcester Humanists, Massachusetts. (They are greater!)

Friday, November 1, 2013

Abby Normal

OK, kids. A Halloween story of sorts. I'm a skeptic of the atheist variety, right? Well, listen up. (Yeah, I know I've missed Halloween by x minutes. Just shut up & listen.)

When I was a kid, I loved ghost stories even though they were verboten.  Hey, I was a Christian Scientist. We believed real spiritual Life was eternal. But it was fun for me to believe in ghosts. I read stories, screamed at slumber-party tales, and imagined the "haunted" house down the road had sent a soul between-the-worlds to my own attic.

Flash-forward forty-odd years. (Believe me, those years were odd.) I became a skeptic of the atheist persuasion. I had (have) two daughters, the elder of whom was sixteen or seventeen when this series of incidents happened. We (my two daughters & I) lived in a new (= non-spooky) log cabin.

My elder daughter had always had a somewhat tumultuous relationship with her father. One afternoon when I was home alone, I heard a huge, deafening crash from my daughter's (empty) room. I thought Shit! her shelves collapsed!... because that was what it sounded like. I assumed her glass dolls & all were gone. I sighed & went to look.

Nothing. Her room was empty. Shelves intact.

Some time later (again when I was home alone) I heard another deafening crash--this time from the stairs that led to the basement.  Instinct said The shelves with all the canners & canned jars collapsed! Again I groaned & went to look.

...& again: nothing.

There were more incidents. My daughter had a party, and a bunch of her high school friends spent the night in our semi-finished basement. In the middle of the night there was a crash that shook the house and woke everyone. My daughter & her friends discussed it, then recreated the noise by lifting and dropping a heavy futon on which several kids had been sleeping. Yup: that was the sound.

Keep in mind that my daughter's relationship (and mine) with her dad was...uneasy...throughout this time.

Fast-forward to that summer. My daughter went to live with her dad for several months. There were upsetting developments.  Very upsetting. She moved home under less than happy circumstances. And then the noises started in earnest.

For several nights in a row, there was a terrific crashing and banging from the (empty) basement. I heard this. It stopped after I turned on all the lights on the first floor & prepared to go downstairs. Except no one was there. (I was not asleep or sleep-walking at the time. This happened.)

As a skeptic (which I've become very consciously in the half-dozen years since this took place) I would doubt someone heard those noises, had I not been the one (among others)who heard them. I have no explanation. I am not claiming a paranormal defense. But I heard them. So did my daughter. And so did close to a dozen of her friends.

Everything I've recounted here is true. I am willing to believe there is a logical explanation. But I have yet to hear one.

Sleep well, campers. Dammit! I don't care if it isn't Halloween anymore. Close enough.

Saturday, September 21, 2013

The Garden-variety Survivor

Before you get your knickers in a twist, let me be clear: I mean myself. And anyone. Or everyone. I've written about this before, but here I go again.

I'm a little too fond of sweeping generalizations. A recent conversation made that plain and made me think hard. I referred to a stereotype this way and got a well-deserved earful, or eyeful, online.

Afterward, my daughter was appalled: "Mom! No one wants to be called garden-variety!"

Good point. I turned it around onto myself to see where it took me. Along the way, I accidentally found a piece I'd been looking for to describe the universal nature of trauma, yours, mine & ours.

Mine is glaringly visible in the form of the prosthetic leg I cinch onto the stump of my left thigh every morning. It's a shocking enough sight to stop traffic (and catch a cab in New York City!). Before my amputation, I limped on a bent leg that fused itself when I was a teen. These are my souvenirs of having been treated with prayer and faith-healing instead of medicine when I was a child. 

Emotional damage is a-whole-nother dimension. I was going to say it's always worse, or usually worse, since psychological pain doesn't hinge on bodily harm. But trauma is its own separate layer even when it's connected to a physical event. I define the event as being the realization of our human vulnerability, i.e. No one gets out of this life alive.

Being told at thirteen I could pray my way out of pain and disease through Christian Science prayer amounted to torture: You have the power to end this condition if you say/do/understand these words. I was wracked with shame that I was incapable or undeserving of healing. My limp was the proof of my failure. I staggered on that weird limb without physical pain for years--but when anyone asked about it, I mumbled about infections and stiffness. Sometimes I literally wanted to die. My gait shrieked SOMETHING HAPPENED TO ME! But emotionally I hurt too much to talk about it.

There is no official standard of emotional pain. Trauma can't be quantified. Any situation that bends consciousness beyond the breaking point leaves scars. They can't be dissected like bone fractures. Trauma morphs humans from predators to prey animals, turns us into terrified rabbits left to react in panicked zigzags rather than reasoned discussions. It can be a different number on a personal Richter scale from time to time, a faint tremor instead of a chasm opening underfoot, but even that comparison bothers me. I hate those pain charts on hospital walls with smiley faces frowning into weeping and agony. It's near impossible for me to choose a number.

I've worn my Trauma/Leg Outfit (or Silly Walk, if you don't mind) most of my life. Now I'm finally able to explain about it. And yet because I can speak about it--because I had a leg severed above the knee--because my body, my stride, my mechanical limb and my voice all agree that SOMETHING HAPPENED TO ME, people feel the need to begin their own stories of survival with, It's not as bad as what happened to you, but---

And I say STOP!  It can't be compared that way. Too much is when your trust in normal life is breached.This leg-story of mine is only my piece in our narrative as humans.

Feeling someone has suffered more or less and is therefore more or less deserving of  compassion only divides us.

I suffered agonies of shame believing I was pitied and pathetic. I believed I deserved my anguish. I thought I was incapable, incompetent and at fault. I felt judged for both not being healed AND not seeking medical attention on my own. Get this: I was furiously jealous of the war vets who were hailed in their hospital beds as champions. I watched them overcoming injuries cheered on by medical teams and family members. And I felt small. What was my story compared to theirs??

No. Any unbearable pain is exactly that. Human trauma is too common an experience for us to allow it to wrench us apart. Emotional damage comes from endless scenarios and it is not for us to judge which is highest on the horror-scale. We're an intelligent and sensitive species. I don't think we're wussier than we were hundreds or thousands of years ago. New dangers appear along with every advance we make.

I'm not going to stop saying this: we're all in this together. No one gets out of this garden unscathed. Compassion, empathy and connection are all we've got.

Friday, August 16, 2013

On "pep"

Up & down summer. Struggling at times. I'll be brief. And offer the pep-talk I found.

My life involves a lot of initials. Acronyms. (Which would be a great name for a racehorse.) Closest to home: PTSD. I haven't heard any pep talks for fifty-year old single-parent amputees with PTSD who struggle with mobility, money, and the Oxford comma. Especially one with a G.E.D.

See, I quit high school twice. (I like to be thorough.) Hey, if it's worth doing, it might be worth doing twice, especially if you don't get it right the first time. I quit in December of my senior year. My high school career was dying a slow, painful death, smothered in depression, frustrated creativity, and despair. (Yes, I debate about those commas. Another difficult decision in the life.) The nail in the coffin was the reaction of my guidance counselor (who knew me only as a name bouncing from course to course trailing incompletes) when I asked whether I could graduate a semester early. This is actually a long story I will abbreviate by just noting that those pesky gym credits are what graduation REALLY depends on--even if you've been excused from gym for years.

The counselor didn't realize I was twirling a combination-lock of courses trying to set myself free in the easiest way possible. I quit that December. Then another guidance counselor who prided himself on Connecting With Teens rode his motorcycle to my house  to Save Me, apparently from myself. (Another long story I will expand on later. Suffice to say I still don't have a clue what the HELL he meant when he said he'd encourage me, push me, and spank me if I needed it. WTF?)

So I went back. Lasted a couple months. Then I quit again. Felt much better for it. Got myself on track: took the G.E.D. that summer & sailed through it. This was in 1980. 

On to England in September, where I battled for my BHSAI. (British Horse Society Assistant  Instructor.) A very happy day, much celebrating that night (December 5) at the pub.

I've been nettled a few times about being a Dropout. But I've worked through it. I look at it as a useful skill: knowing how to Get Out of a Tight Place, as Winnie-the-Pooh might say (if he quit school). Did Aron Ralston "drop out" when he cut his arm off to escape death in that  canyon? No, dammit! I do what I have to. And I'm Still Here. And I pride myself on being a Closet Intellectual, as a friend called me once. (I treasure that!) 

So flash forward to 2013 & the seemingly never-ending struggle. And the ad on my favorite radio station: pep talks for folks who are considering...getting their...G.E.D.'s...

Yeah, I know. I've got one. But pep talks? A dearth. I'm running short. I mean DRY.

So what the hell. Tonight I logged on. I'd heard a tiny clip of the one I knew I needed to hear: "...You can do this. I know you can..."  (The British accent didn't hurt.) Yeah, there was a dearth of parental pep-talk vehemence about human matters when I was growing up. The G.E.D. site has a sliding bar so you can find your level of...intensity. Mine was level 10 (wait for it) "Intense."  =  Alfred Molina.

I wept.

Played it three, four, maybe five times. I can do this. And I am just as deserving of a pep talk as anyone. I put it on my Favorites Bar, in easy reach.

So in this time of endurance and hanging-in-there, I invite you to snag your own pep talk for any task you may face.  GED Pep Talk: Alfred Molina

We're in this together. And we can do this. I know we can. We get by with a little help from our friends.


Sunday, July 28, 2013

A Summer Rerun With One Leg

Just in time for summer, it's baaaaack... my youtube interview with Sean Faircloth. Remember, I tried to re-post it last December (on its anniversary) and discovered it had been Removed Due To Copyright Dispute?  Apparently the dispute is resolved.

The interview took place December 5, 2011 & was originally posted soon after.

New blog post soon. Right now I'm hitting the pond to swim half or three-quarters of a mile. Cheers!

Thursday, July 11, 2013

Stump Swimmin'

Has it been a whole year that's gone by since last summer? You know, when I had to duck out of Women Swimmin' For Hospicare because of knee surgery? Ditch the August 1.2 mile romp across Cayuga Lake (one of the Finger Lakes) for a great cause & leave the swimmin' to 300 other like minded gals?

Well, I'm back in the water again, replaced knee kicking like a sonofagun (painless! yay!), gone-leg phantom-kicking. (I used to think the phantom leg helped. Now it seems to be slacking.) Did some swimmin' last winter at a local school's pool starting in January when it was snowing outside. That felt good, but I don't miss the chlorine. I'm an open-water swimmer, apparently. It's like the difference between riding a horse in a ring instead of cross-country. Bring on the lake. (You can sponsor me at Women Swimmin For Hospicare).

I jumped in my pond a few weeks ago, but it's approximately the size of that pool. Just add too many cattails & some muck on the bottom. I love my pond, but the short laps seem to vex me. (No room to gallop! See above horse reference.)

So last weekend I headed over to my friend's pond a few miles away. This is a bigger pond
and my friend, obsessed triathlete that she is,
marked out a 50-yard lane. Perfect!

Last weekend I swam ten laps: a thousand yards. Today I swam fifteen hundred. I should have swam (swum? No: I'm not even going to attempt to Google the tenses of "to swim"...) in between, but since I hadn't, I figured I'd act like I had. It seemed to work.

Swimming gets easier for me every year. I never swam (swimmed?? swum??) laps or distance before I was an above-knee amputee. Now you can't keep me away from my goggles, earplugs & rubber bands on my wrists (to keep track of laps.) The flat-out exertion is something I loved all my (two-legged) life; now the water gives me the feeling of being able to push my muscles and endurance the way few other things do. My arms get to pump and stride the way my legs did as a kid.

The water is brown (not chlorine-blue, but brown, as water is meant to be!) and the sun shining down into it makes the bubbles bright. When I get into the Zone (swimmer's high!) I feel like I'm flying down some long crazy water slide, a cosmic fresh-water creek, shooting whitewater rapids/body-surfing with  half an acre of bass.

The first 500 yards I have to be diligent. The second 500 are enjoyable. The third are half trippy/giddy, half wind-down. And the best thing? You don't feel yourself sweat.

The worst thing? I've live fifty-one years without being able to conjugate the verb "to swim". & I'll be damned if I know another one to use in its place.

But maybe those who can't, conjugate; those who can, swim. Check out my sponsor page!

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. 


Wednesday, May 29, 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. 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.  

Wednesday, May 8, 2013

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...