A Virtual, Blog-side Protest

Today is the Annual Meeting at the First Church of Christ, Scientist, Boston--The Mother Church. Three years ago I attended a protest of this event held by the Boston Atheists.

It was organized by Seth Asser, a pediatrician devoted to protecting children from religion-based medical neglect. He and Rita Swan produced a startling study of child deaths under legal prayer that would likely have had good outcomes under medical treatment. (See http://childrenshealthcare.org/wp-content/uploads/2010/07/Pediatricsarticle.pdf ). 

I hadn't seen the dome of The Mother Church in twenty years. But I attended Sunday school there countless times when I was a kid, visiting my grandmother or on a field trip with my own Christian Science Sunday school class. My grandmother lived across the street from the center and worked as a bookkeeper for the Christian Science Publishing Society. As a kid I'd walked with my mother past the reflecting pools, the expanse of plaza and the imposing buildings that made up the Church Center.

This was before the bone disease that destroyed my left knee (and arguably chunk of my sanity) when I was thirteen. It was treated, of course, only with Christian Science. Sometimes I think of it as my time as an exchange student in hell.

At the protest I joined others who introduced themselves and distributed signs--as though I needed one.

I wore a T-shirt that said THIS WAS MY CHRISTIAN SCIENCE "HEALING". And shorts.

Immediately a security guard appeared. "You have to stay on the sidewalk. You can't sit on the benches or go on the lawn. That's church property."

When I'd requested to have my name removed from the membership a dozen years before (eight years before my above-knee amputation) I'd received such a loving letter: Of course, you're always welcome as Christian Science Reading Rooms, church services and lectures. You have our continuing love, and we wish you all the best.

That day: not so much.

We broke for lunch during the meeting, but we were waiting when the members left the church.

The light had taken on a hard slant. The thin stream of people split into two groups, some walking towards the parking garage, the rest towards us and public transportation. I stood at the line we were not allowed to cross. Where plaza met sidewalk. Where Christian Science met reality.

The people coming from the church wore fixed smiles and stared past me. I waited for someone--anyone, just one individual--to look me in the eye.

They just smiled into a horizon only they could see.

"Don't worry!" Seth yelled. "We're not really here! We're a mortal illusion. Just deny us." The way I'd desperately tried to deny the infection that ate at my leg when I was a kid. Denial, the approach still protected by law in dozens of states .

One distinguished older man couldn't stop from snarling, "Go to hell!" but even then he averted his eyes from mine. Mostly, their faces were frozen, half-grimace, half-smile. Dissociation can almost pass for polite. I still do it myself: zone out when reality is unacceptable.

It's how humans cope. Even if they call themselves Christian Scientists.

Photo credits: Al Grover

Kneedle

Guess which knee got the needle? No wait, no fair: too easy. One gets an allen wrench.

Ah, cortisone, how do I love thee? Let me count the ways. Those cc's of time travel serum have taken me back a couple years. Not as far as I'd like, not to those first few years after my amputation when I was strong enough on my feet to work as a barista, and even at a plant nursery...but compared to last week? No contest. 

I sat down and wept in the doctor's office when I explained how I'd gotten: if I stood after sitting very long, I couldn't put weight on my right leg. Only lurch and gasp and grab for a handhold. Thinking about getting out my cane. Feeling stalked by a wheelchair. Only after a few minutes would the pain and weakness recede, mostly because of my outstanding ability to ignore them. I need a plan for the future but it's hard to advocate in this frame of mind. Pain clouds my thinking & wears me down. But I insisted: xrays & a referral to an orthopedic surgeon since I haven't seen one in several years. Rx for the TENS unit, though it feels like ordering a new deck chair for the Titanic.

But the needle was good. Today I'm trying to accept I can stand up and walk with only slight pain in the joint. It's still weak. It still grinds. But it doesn't have that fragility of glass ready to shatter. Muscle memory screams Watch out! even when it doesn't hurt. Doctor said the shot should last three to six months, two at the minimum. I heard him but I can't believe it. Disappointments, pain and disability shave away your original sharp edges of hope until you are as streamlined as a torpedo. Always prepared to barrel head down through stormy waters because expectations are a liability. I've worked so hard to learn how to hope again. Still, I recalibrate down to resignation much too easily.

Still. Today feels good. I'm going outside.



. 

My kneed to swim

It's wonderful when I swim. I leave my prosthesis on the grass and hop-dive in. Kick with my right leg. Stroke with my arms. Shoot through the water like a dolphin. Float on my back staring at the sky, at the wild roses that cascade to the edge of the pond. Swim steady laps across the length of the pond. I just jumped in ten days ago but day before yesterday I swam almost a mile. Could have kept going. Didn't want to stop. Hated to crawl out of the water. It's like hopping off a trampoline back into the unforgiving world of gravity. Damn gravity.

 My right knee crunches when I lean on it. A new pain has flared on the outside of the joint. Usually all the grinding comes on the inside. I wear my knee brace all day now. After I've walked a while the pain and weakness fade into a white noise I mostly ignore. That's too familiar: it's how I managed my deformed foot and ankle in 2006, the year I felt my leg-clock run down.

If you'd have told me thirty years ago I'd do as well as I did with my fused leg, then been active for five years as an amputee, I would've been thrilled. Lose motion at fifty? Big deal--so distant from twenty. Infinitely far away. A small price to pay. Wrong, Liz.

Now I'm scrambling for a new point of reference, a physical venue where I can find the hard work and repetitive motion I love. Give me a tool to use, a tractor to drive, a horse to gallop & I was set. I craved the movement, the breeze, sun and dust, and my muscles aching at the end of the day. I need a setting where I'm still able to push my body.

Water.

I swap rubber bands from wrist to wrist each lap to keep count. Otherwise I lose track. After about a quarter of a mile I slide into the zone. I lose myself in the strength of my arms and legs. Or rather, leg. Except my phantom leg kicks too. I lose myself in the joy of going as fast as I can, as hard as I can, as long as I can. And nothing hurts.

Doctor's appointment tomorrow: cortisone shot in the knee. Bring it on. Prescription for the "TENS unit" insurance overlord Nurse Ratched said I have to try and document before we go farther with another approach. It all feels like deck chairs on the Titanic.

Maybe, instead of a knee replacement, I need surgery to give me gills. Then a ride in a sloshing tanker truck of water up to Cayuga Lake, the 400-foot-deep Finger Lake twenty miles from here. Forget just swimming across it at the surface: I'll swim it end to end, underwater, when I'm released. Flip my leg like a tail. And go.  

Postcard from Holy Crow Farm

Today my mare Laredo turns eleven. She was a three-year-old when I first saw her, untrained, brassy and bold. I said "Oh, I don't know...I don't really need another horse. My horse just has a little spook to him."

Indeed he did. Three days later I crash landed in reality: yet another fall from the seemingly endless string of frightened geldings I'd owned/trained/worked/exercised throughout my life. OK, I'll admit it. I welcomed them as challenges, that combination of twitchy and reluctant. Sometimes I bought them though I always claimed I wanted a tough mare instead. The snotty mare appeal goes back to Flicka, the unfinished dream-horse I was yanked away from at thirteen by the bone disease osteomyelitis.

My personal mounts from 1984 to 2004 were geldings, with the MO of spook & spin & dash. All spirited enough to run and jump; neurotic enough to satisfy my need to Ride the Hard Ones. Try as I had, I couldn't always instill the confidence they needed. And hell, suddenly I was forty-two, still trying to prove something. For some reason, falling off wasn't as much fun as it used to be.

I made up my mind airborne, mid-fall--Hell yeah buy that filly with the attitude!--but I had plenty of time afterward to be sure. I sat with my back against the sapling I'd hit and nursed my useless leg and my sore right shoulder. I was lucky the folks working at the greenhouses next door figured out my echoey voice bouncing off the trees was an emergency, not just a woman shouting for a lost dog.

The ambulance crew took me out on a backboard. At the hospital they thought I had a broken pelvis, but it turned out to be a dislocated hip. I requested general anesthesia when they put it back. Thirty-six hours after my wreck I walked out of the hospital on one crutch: I was nursing a separated shoulder and cracked vertebra. Still limping on the crutch, I got a horsey friend to drive me to see the red filly with the white oak leaves on her hips. Friendly. A little pushy. Sweet. Brave.  Not  big enough for the woman's husband, whose mount she was supposed to be. Ready to start. They'd had her since she was a baby.

She was a rescue case.Like the kid I'd been, except I wasn't rescued. I could start her right. She'd be the horse I rode into the question-mark of my future. Would my leg give out? Would I keep my limb? The decision was on the horizon.

At the end of the rope, the filly sighed. Licked and chewed, reluctantly. Tough. But willing.

I bought her. Damn straight. I started her right. I'd learned: don't skimp. The horse doesn't get it until the horse says so. Maybe all the riding, training, falling, getting back on and persevering had taught me how to train this mare I named Laredo.

She was solid when I rode her in the local parade the next summer, mannerly for the farrier and vet, polite loading on a trailer. We dragged tarps and Little Tyke cars. She loves trails and chasing other animals; she hates riding in circles inside a ring.

But she wants to be with me. I'm the boss of this most bossy of mares. When my leg was amputated, I wasn't sure I'd ride much more. Wished I'd "finished" her (like I know what that really means). But Laredo is happy with me.  We understand each other. She's due north on my internal compass. I need her. We've got this herd thing going. It's special. Happy birthday, lady. Love you, mare.

Christian Science: Making other religions squirm since 1879

Excellent post by ex-Christian Scientist blogger MT_SPACE last week. He was raised Catholic, became a "Scientist" as an adult and spent many years heavily invested in the church before declaring himself a "born again atheist."

http://mt_space.blogspot.com/2012/05/it-surprises-me.html

He discusses how he switched "brands" of religion before rejecting the whole category. It made me consider the appeal of Christian Science as an intellectual belief system with a metaphysical, ultra-modern New Age gloss--at least at first glance.

I grew up immersed in it. I had a minimum of immunizations. A practitioner prayed when I caught chicken pox and German measles. Our church was austere, our services serious and quiet.

By comparison, other churches were ridiculous. When I was seven I visited a friend's Methodist Sunday school. We played games. We had snacks. I was appalled. Sunday school was supposed to be an endless hour sitting still at a table reading from the King James version of the bible and of course, Science and Health with Key to the Scriptures by Mary Baker Eddy. No carrot sticks or crackers. No juice. No coffee hour for the adults. No games, except racing to find certain books of the bible, which we begged to play. It was the only break from taking turns reading aloud, stumbling over words and trying to wrap our brains around the concepts.

What is the god of a mortal, but a mortal magnified? This indicates the distance between the theological and ritualistic religion of the ages and the truth preached by Jesus. More than profession is requisite for Christian demonstration. Few understand or adhere to Jesus' divine precepts for living and healing. Why? Because his precepts require the disciple to cut off the right hand and pluck out the right eye,--that is, to set aside even the most cherished beliefs and practices, to leave all for Christ.

Pluck out your eye? Gross. We got in trouble for giggling. We had to lift our thoughts above mortal life: it was unreal. We had to keep God's perfect creation in mind. Then we would only know harmony. Sure. It was familiar, weird but normal. If it was all you had when you were sick, it could seem comforting. 

Other religious believers shout that Christian Science is not the least bit Christian. But serious "Scientists" are the most devout followers you'll ever meet. They don't smoke or drink, they pray constantly and try to do good. Evidence of their healing is anecdotal at best. Nevertheless, hard-core members stake their lives on so-called Divine Science. Sometimes they survive; often they don't. But they believe in their faith enough to willingly suffer ex-cruci-ation. They have enough faith to put their children's lives on the line.

And other religions hate this. Stop taking that healing thing so seriously!! 

But hey--if prayer works at all, why not depend on it? Is it just posturing? If some prayer is good, a lot is better, right? Is prayer practical or not? If too much faith in a god is bad, maybe even fatal, what does that say about the premise of prayer?

I've been out of Christian Science almost twenty years . I've rejected the whole category of religion and I vehemently reject any church's substitution of prayer for a child's medical care. But I remember the very first year I was in therapy when I felt the power of religion leave me. Those rules that had defined my life slid away like a tide going out. It left me with the expanse of reality. I'd given my mind and body to Christian Science and it had broken me. I wasn't about to hand over my faith to some lesser church. Those amateurs.

Yes: Christian Science takes the premise of prayer to a potentially horrifying extreme. It shocks all but the most devout believers. It's immoderate. But that's the ultimate dimension of religious belief: My faith is real despite the evidence around me. I know a different reality. It's a slippery slope.

I'd love to hear your thoughts.

Stump Splash

Got in the water today. Hot out, beautiful blue sky, & time to swim. My pond is still a little algae-fied lately. I treat it weekly with the non-toxic, all-natural, supersonic Microbes but I didn't get a good start this spring and with all the warm weather it's a little...furry, so far. 

So I drove to my friend's pond late this afternoon. It's up a sylvan lane, past what used to be a pasture & riding ring where she & her daughters rode a dozen or so years ago after I fanned the flames of their horse interest.

The pond is beautiful. It's not huge but a nice size, full of bass, surrounded by hilltop trees and grass. It even has a pea-stone gravel "beach" where an AK amputee doesn't have to slide through mud into the water as she ditches her crutches.

It was perfect. The water temperature was just right, not cold until I dove down. Since I started swimming the lake four years ago, I wear goggles & earplugs to handle some of the water-logged feeling. I hate water in my ears. I'd only planned on a meet & greet with the water, but I was prepared to swim if I felt so inclined.

I did.

Understand, I have one leg. On land I walk, happily but stiffly, with my non-computerized Otto Bock EBS 3R60 prosthetic knee. I still fall sometimes. My organic right knee has deteriorated to the point of being replacement-worthy from years of overuse. On land I ice it, wrap it with Ace bandages or wear my unloading brace. I'm fifty, but I'm grinding to a halt. I can't work or move the way I did even when I had a fused leg and I miss the whole-body exhilaration of pushing myself. It was an important side of my relationship with horses that is limited now. Speed. Athleticism. Physical challenge. I haven't run on my own legs since 1975. 

Today I tossed my crutches on the beach and dove into the shallows. It set me free. All the motion I needed was there--swimming hard, kicking with my leg, feeling my knee work without pain. I kicked with my absent left leg, the one I still feel; I believe my phantom limb helps propel me through the water. It was pure joy. Every stroke, every gasp for air as I turned my head. When a little striped head poked up to watch me across the water before disappearing, I just shrugged. It was probably just a painted turtle. We both had swimming to do.

Whenever I tired, I floated on my back. Goggles made the non-aquatic world a silver blur of light, sky and trees. Goggles made me an unblinking fish head down in the water. The sounds of bubbles, my breathing, and the splash of my arms were the only sounds in my underwater environment. It always makes me feel like an astronaut. An aquanaut.

Think I'll be swimming a lot this year. Like a loon: I'll make a nest at the edge of the water. Roll in without needing to walk. Loons have solid bones that let them dive 200 feet into a lake but this makes it difficult for them to move on land. So they don't. They swim. They dive.

And they fly.

Paging Nurse Ratched

Just a little rant, OK?

Let me start by saying to the Insurance Overlords, State of New York: Thank you for my coverage. Thank you for my leg. Thank you for my socket that fits.

But... Why must you deny me a knee brace that costs a fraction of an above-knee prosthesis and less than half of a socket? I know--it's on the edge of being experimental. The Bionicare Knee Brace has a stimulation system that zaps the joint into thinking it's normal, or at least this is my understanding. Studies show it to be effective in staving off knee replacement surgery. Which my doctor says I'm too young for, at fifty (going on seventy). Though I have a feeling the Overlords, in their twisted universe, would pay for surgery first. Spite surgery.

 The last letter I got was signed by a PT named (appropriately enough) Pike. Think of a spear with a severed head on it. She said my request (which included med & injection records, a letter from my doctor, a statement from me and a plea from my orthotist)  could not be processed because information was...inadequate...incorrect. Or not present.

It appears that a trial to confirm the efficacy of this device for Ms. Heywood's pain and dysfunction is warranted. Provide details of Ms. Heywood's trial...Provide initial evaluation...Provide documentation...Provide studies that compare Bionicare to other treatments such as (but not limited to) exercise or medications or to different forms of electrical stimulation...

Ah. They want a flipping term paper. And they want me to use the brace on trial to see if it works. Except they won't approve the brace for me to use without knowing how the trial went.  See the beauty of their world? It has the logic of a moebius strip. I bet they all believe six impossible things before breakfast. Well, hey: I used to believe nothing I experienced was real except as defined by Christian Science. Did I spend fifteen years in therapy so Nurse Ratched can play mind games while my "good" leg gives out?

But. I've got a friend on the inside, sort of. A fabulous trooper of a paperwork magician at Hanger prosthetics. Her name is Sarah. We have regrouped. I just signed a release to send the Overlords my nastiest bone-on-bone knee x-ray. I will be calling Madam Overlord tomorrow. I don't want to believe (though I know this often is true) that she is paid to deny middle-aged single-mom above-knee-amputees a band aid that might postpone surgery. I really don't.

But for her sake, I hope Nurse Ratched gets a good night's sleep. She's about to meet One-leg Liz. ;-)