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.

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.

Cheers.

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!

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!

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.