The Perils of Perfectionism

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At the gym, the substitute Zumba teacher called out new steps with a determined cheerfulness. From the back of the room I peered through three lines of shuffling, swaying bodies to catch sight of the moves. I was not thrilled with this teacher; she tended to stray just enough from the music’s rhythm to make it hard to watch her, harder to follow. My neurological and emotional instincts were to move right with the beat, not miss it by even a smidgen. I knew the others also had complaints yet they remained attentive to directives. They looked good from where I was moving along a bit haphazardly. I felt frustration mount until I veered off the proscribed steps, modifying a couple, throwing in a spin. Think I will slide my feet instead of bouncing, swing hips side to side instead of back and forth–more natural to me and becoming. Then I came to a standstill as I tried to figure out where everyone else was.

Irritation with the class had given way to a need to correct the choreography, to hit my beat, not the teacher’s. I was right, after all. I loved to dance and embraced Zumba’s vigorous fun. (A goal of mine is to be in good enough condition by summer to take a yearned-for flamenco class at a dance studio.) But now the old sass I’ve had to often quell all my life took over until the urge to break out and dance my own rhythmically attuned dance was pushing me toward….well, I closed my eyes a moment. Imagined the room transformed by low lights and live music, people dancing with lovely abandon. I was jolted from that brief reverie when I jostled a man next to me. He was keeping close to the metered measure but also all instructions. And no stumbling. He knew the value of sticking with the group, staying in line. I took a water break, stifling the desire to walk out as a few already had.

I’ve begun to count on Zumba to help keep my heart in good working order. It’s a prescription, part of a broader regimen my cardiologist and I agreed upon nearly twelve years ago: if I maintain my health with daily cardio and practice diligent self-care, I get a chance to live a few more years. Maybe many more. So what was my complaint? Why couldn’t I just do what was expected this time? Why did I think I could diverge from the norm when the benefit in this case came from following along? I felt I was different. I needed things to be exacting, correct as well as fun and that led to ignoring the exercise mandates Zumba provided.

The truth was, I was not doing so well; was the beat off or was I? Maybe I thought I deserved more for the money and time. But I forgot my real intentions. Did I think I was on Broadway? Who had made me soloist, leader or critic? 

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I learned early that it was important to do things the best I possibly could. The American way, at least where I lived. Mediocrity was never good enough, was, in fact, equal to failure. “Excellence Above All” was a favored motto as a youth. My school notebooks were covered with those words, as though noting it multiple times would make me impervious to the possibility of imperfection in all I undertook. It succeeded in that I worked hard and was confident much of the time. Feedback regarding various endeavors assured me I had some intelligence and talent. But I was on more deeply intimate terms with my flaws and weaknesses. As a young cellist and vocalist I despaired some days of ever completing a certain measure of music just as my teacher or my musician father required. Demanded. I worried I would not get the awards I strove to achieve. Everything I attempted had to fulfill a goal set highest. It meant everything to excel. It meant I was good enough. Acceptable. Pleasing to others. If I didn’t think I could manage to achieve something I didn’t try or gave up quickly. 

Like sewing, for example, a talent at which my mother excelled. Her seamstress work was actually art; I wore her often custom-designed clothing proudly. But my seeming lack of feel for the mechanics of creating with fabric only brought anxiety. My mother sat beside me correcting errors, her voice soft but insistent that I try, try again. I couldn’t get beyond tangled thread, a crooked seam or hem to resurrect the vision of a beautifully completed dress. I just saw failures. So I gave up, except for a few things years later made of necessity–simplest shorts for my children, basic curtains. I sometimes had ideas for a sewing project to create–but only if like my mother. Years ago my children bought me a sewing machine for Christmas. When I unwrapped it I burst into tears–because they knew I yet dreamed of being good at it and were cheering me on. But also because the very sight of that machine daunted me. It had defeated me. Could I even bother to try again when it brought mediocrity at best, poor results at worst?

Sewing is one thing. But a desire for perfection as a human being is another. I had that urge, as well. I suspected if I tried hard enough spiritual prowess would be attainable and once that occurred, I would be all set. Foolish mistakes would not happen. Tragedy would be averted. I would be the sort of girl who the sort of guy I wholly desired would instantly be mine, utterly beloved. I would set to my tasks and find them far easier. Since I had a powerful faith in Jesus’ uncommon wisdom, it seemed reasonable. It was clear that such Divine Love deserved full attention to the expectations: kindness, patience, courage, tolerance, compassion, forgiveness, fortitude and so on. But lo and behold, I was not able to succeed for long before my attitude would slip a little here and there. My personality and will seemed governed by moods, impulses and defects–those aggravations that would not help bring me anywhere close to a state semi-holiness. How did the great sainted souls of eons manage it? Trying and praying very hard weren’t nearly enough to get a good foothold on spiritual bliss. I had to content myself with random mystical moments and a sustaining belief.

So I despaired while growing up, youth being a time of great hope and misery. Despite medals and awards and honor roll and opportunities to do what I loved–the arts, athletics, academics–I felt the terror of failure like a gaping chasm between me and my dreams of fulfillment. I worried about missing the other side when I lept. If I could not be who I believed I should and wanted to be, then why even bother? There were things I ceased doing because of this. Like music. It was more than perfectionism that waylaid me but the joy of it was lost somewhere on a stage. Even, or maybe because, the applause came–but also could evaporate. When I lost my edge for many reasons, grief followed. I thought the price paid might kill me but it was that need to be perfect that threatened my well being. Despite giving it up, music has breathed its magic into every day in countless ways–even in a Zumba class. Even as I whistle, hum or sing along to a CD.

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It took some years to realize I was not very unique. I would have both triumphs and wipe-outs, just like everyone else. I have what I was born with to help or hinder me, but I’ve also had chances to garner insight, knowledge, self-acceptance and mercy. Mercy is key here. For others, yes. But when we live without consistent kindness towards ourselves we court disaster. Holding ourselves responsible for our actions is crucial. Perseveration regarding our mistakes, not even necessary. That creates an irascible, angry and fatigued person. Or a self-righteous one. Another side effect is that nothing anyone else does is good enough, either. And if we get to the point where we are tough as nails and no one should get in our way of achieving, we’ve become blind to the freedom of self-forgiveness. God already embraces and carries us when we are fighting for a better life but running in circles. Only for love. We can help by waking up and slowing down. By being gratefully equalized by life. Being perfect has nothing to do with it.

Perfectionism determines that there is no worthiness save for those who achieve one hundred percent, every single time. How does this help me, and you, to experience the diversity and richness of being on earth, to appreciate the manifold wonders of ordinary life? What is exquisite is whatever, whoever dwells and moves in love. What is acceptable is becoming one’s true self. What is perfection is that we are necessary components of the cosmos, a connecting thread of the universal symmetry. That we overlap one another in spirit on earth and beyond. All we have to do is be willing to give all we can, be ready to do what we can barely imagine. Not perfectly but with commitment.

I stayed for the full Zumba class. I fell into place, then changed up steps a couple times, discreetly. I joined in the fun. And the fact is humility has to teach me things the days my health is not feeling like a win. I practice acceptance, but still give things a shot. It’s also my nature to experiment with rules. Taking a small risk is more fun than doing things the same way every time, perfectly. What matters most is jumping–or walking–into life’s bold yet tender core, right where I belong. This way I honor myself; it helps me honor you. There is no failure in this, only freedom. This, I can do.

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Do Not Forget Your Own Heart

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I am not wild about Valentine’s Day. Like many, I believe it is a commercial ploy to boost lackluster sales following the holidays. That said, I still made a Valentines’ Day card with two of my grandchildren recently. We love poster paints, acrylics, watercolors, felt tips, crayons and colored pencils–the lot. They are natural artists, finding new ways to make old concepts interesting, into magnets for eye and heart. I just like to play. The card I made included seven hearts for my five children, my spouse and even myself.

Why me? Well, I’m part of the family, after all. But there is more to it than that. You will begin to understand if you look closely at the image I have shared above from the American Heart Association. They posted it on a Facebook page today, and asked how viewers loved their own hearts. And since I was diagnosed with aggressive coronary artery disease at the comparatively young age of fifty-one, it struck me as a good thing. So I want to share with you these thoughts today:

Respect your heart; it’s place in your life is paramount. Adore it. Take it out for a rousing walk every day, even on adventures you think you can’t manage but somehow do. The deeper it beats the greater its joy. It will perk up at the attention and be good company no matter what’s around the corner.

Talk to it. Share your awe at its mighty power. Then tell it stories that are rooted in triumphs over trials, random altruistic deeds and vibrant, far-reaching hopes. Show it the best seat in the house, like an old trusted friend who attends every single show. It will want to see every last scene.

Make sure it has opportunities to be courageous; it has the impulses of the brave and stalwart already. Has your heart forgotten you when you forgot it? If it has even failed to give your sinew and bone the strength that it needs, it is not for lack of trying. It came into your possession already a fearsome warrior.

Let it sing even when you are startled by its plaintive or peculiar sounds and thumps. Tend to it immediately if it falters. The rhythms of its compositions are from the stream of celestial music that powers the spheres and lights our skies. Be reminded that God is the grand composer, you the prefect instrument.

Listen to its wisdom; we are given a heart so that our every plane of existence has ready guidance. Encourage it to laugh so that it expands every cell and finds relief from all its labors. But please also let it weep, for the potent tears of the heart purify its blood; without weeping it will close up and then divide against itself.

Breathe. Breathe the fragrances of your beloved’s skin and your grandchild’s hair, the scent of warm bread, wild and subtle winds from the four corners. Rest among wild things. Revel in the earth’s treasures and the blessed waters. Pull beauty into the heart’s chambers and grant it peace.

Dance with your heart, leap and fling your arms wide so it bounces against your ribs and resettles when you drift along the horizon of your living. Let it carry you into odd moments and release you into wonder. Are you sitting still even now? Get up and move for no good reason. Jump into the center of you; give your heart its due.

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Create for it. Expose your dreams, feelings and fascinating random imaginings. The heart likes nothing more than to be moved or flabbergasted by something new. Submitting to the thrill of capturing an idea and giving it structure refuels us. We are born creators because we are part of God. Your heart knows this even if you do not.

Feed it so it runs as well as it can. Not too much, but foods fresh with color and taste that prepare you for greater things. Eat only what fills the need so that your body is grateful for its nourishment and not burdened. And add chocolate or chilies; be impertinent and surprise your body.

Share this heart that you were made to have and to hold all your worldly days. When someone reaches, hands echoing with emptiness or regret or misery, reach back. Don’t be afraid. If there is a lack of grace, just let your heart speak. When someone falls to their knees, let your heart lie down beside theirs and speak to it. This is all that you both will need.

Do you believe you are alone? You will be made ready for love if you tend it and offer it. It may take patience; it does take courage. Your loneliness is the result of forgetting you live here among friends. We all are alone. But we have human hearts that want to know one another. They save us from ourselves. Our hearts know we are in this together.

When your day is done, do this last thing: look to your heart. Unload any weight it carries. Pray for its freedom from resentments. Soothe it with psalms for the living. For this day has brought you to this moment, to this night. And whether hearty or frail, your heart is still beating, beating like the wings of a mighty messenger, teaching and carrying you through this brief life. Be merciful, be kind to it, and it will fill you with strength enough to go the remaining miles.

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Tango for Sale

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She said they didn’t have any great skills but that’s why people enrolled in dance lessons, right? So they saw their new ad and here they were.

Sadie was a talker but they both shared a lot, how they liked to do things that required far less sweat–watching movies, enjoying six course meals, mastering the art of checkers. Carlos was a factory worker so when he was off, he was done. Sadie was manager of a tapas café until the owner’s daughter took her job. Now she worked at her aunt’s collection business.

“Collection stinks. How can I harass people who don’t have the money to meet basic needs? It’s indecent.”

Janelle tried to not listen as she showed a student how to stretch, but how could you avoid such a voice? She couldn’t imagine what it was like getting Sadie’s phone calls or living with that decibel. But the way he patted her shoulder, brushed her bangs from her eyes and bent down to kiss her long nose–some might say large–said it all. He was handsome in a beat-up way, Janelle thought. Must be newlyweds.

They wanted to live better, lower stress, they said. Janelle and Baron had an ad in the neighborhood weekly but this month they’d run a special. First three classes for ten bucks each, then after that the regular rate of twenty an hour. Or ten for one-forty, a real savings. Not so many people wanted dance lessons when they had trouble paying bills. It netted them a half-dozen newbie so far.

“I gotta keep myself in shape,” Sadie said, rolling her eyes. “I’m edging toward thirty-seven and you know where that leads.”

Janelle smiled and handed her a schedule.

Carlos watched the group learning the tango.  He seemed restless; Janelle assumed Sadie had dragged him there. He didn’t ask questions, shrugged with hands in pockets. But in ten minutes it became apparent the guy had a sense of rhythm. He tapped his foot, bounced a little as he paced, and studied the moves.

“Sign us up for this one. I can tell he likes it.” Sadie beamed at her man and he shot her a hundred-watt smile.

Janelle took her check for three lessons and talked over attire and rules of the dance floor. Just to be clear. Sadie had worn a long brown sweater, tight jeans and heavy boots.

Baron whisked by, then paused. “You like tango?” He was the expert on this dance.

Sadie shrugged. “We like games, checkers or dominoes, t.v. shows after work. I don’t watch football like him but I used to play volleyball awhile back. I had a bike, rode it every day. Got ripped off. Tango, yeah, well, I used to dance a long time ago. I’m game to try anything and I love Latin music. And Carlos.” Her laugh boomed in the small space and a few people looked her way.

The couple hustled out the door, Sadie waving like they were old friends, saying they’d be back.

Baron chuckled as he stepped back on the floor. “He might be a natural.What a couple of characters!”

Janelle threw him a sideways glance. Her husband: six feet three, a balding redhead, brown eyes that could scald or light her up depending on his mood. He never took off the long necklace with crystal and jade pendants. He denied being superstitious but she knew better.

Of course, she was not a flawless fifty. A bit soft, okay rounder than she’d planned. But she had thick, long, silvery hair; it saved Janelle from despair some days. Ridiculous. But every morning after the mirror check she said aloud, “I’m still a dancer and a better teacher.”

“I bet the woman can dance,” Janelle confided in Baron that night as they closed up. “And that Carlos may be a natural.”

“In the end it doesn’t matter, darling girl. Two more students! We’ll make a decent profit this session.”

He rapped the scarred wooden desk top three times.

The next week the couple turned up. Carlos seemed embarrassed and Sadie did not when they bungled their first steps.  They took a sail around the room to loosen up more despite Janelle and Baron’s frowns. The group appeared more relaxed with the breezy twosome there. Baron noted it felt less like pulling teeth to get them to commit to the steps.

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“Look,” Sadie told everyone, “just act like you know what you’re doing and mirror our teachers’ movements–they’re perfect!”

Carlos held her tightly. They were stiff in each other’s arms. Then tango music crescendoed, intense rhythms shaking up melody, Sadie’s laugh punctuating their goofs.

The room felt good, the atmosphere livelier.

“See?” Janelle whispered. “Though they could be a little more serious.”

He nodded slowly, eyes on the new couple.

There were twelve total on the floor. The ones who improved were those who let down their guard a bit. It wasn’t just feet, arms and head placements. The tango was a passionate dance, a lover’s dance, and relayed what words couldn’t begin to say. Some people were too scared to welcome that sort of power. Others would find their way. And some, like Carlos and Sadie, got in the thick of it because they wanted to be right there.

The second class was a success; everyone learned what they were supposed to, on time. The group began to jell. The third class demanded more, putting  more complicated steps together quickly. Confidence was required.

Sadie leaned into Carlos as they veered away to the group’s edge. She’d worn a floral skirt and scuffed red dance shoes and when he guided her she responded with the trust needed to move in concert. They executed more difficult moves, moved instinctively. They were engrossed, enchanted–by the music’s heat, the challenge of the dance, each other.

Baron and Janelle watched in surprise. They’d been practicing. They had, it seemed, real promise. Everyone stole admiring glances at them. Sadie and Carlos were beautiful to behold; their electric presence brought back Janelle’s and Baron’s past, when they were young, fresh, excited by the grand emotion of it all.

“I love those kids,” Baron told her as they watched the floor and the students. “Carlos and Sadie have the spirit. How can you teach the essence of tango? I know we didn’t teach that in three classes.”

“No, but we still get to show them the way. Look at them glow.”

She said it with such reverence that Baron slipped an arm around her waist. He absently touched the necklace. He wondered over  the new couple.

“They’ve got something besides talent, Janelle. They know something, a secret that makes them good so fast.”

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She shook her head but the way he said it, his hand on those darned pendants–she knew what he meant. She shivered a little and followed their moves. Turning in the light and shadow, their bodies in sync, their profound silence infused with something Janelle couldn’t name. When the song drew to a close, all the students clapped for each other. They were so pleased to have taken this class. And they had two stars in the making right before them. They were drawn to Sadie and Carlos–the first pink-faced and panting, the second animated and shiny with sweat–like bees to clover. They lingered awhile, chatting until Janelle and her husband had to lock up.

When the students trailed out, the two teachers sat and looked at each other. They were having success. Happiness coursed through them like a veritable transfusion. Janelle got up and settled on her husband’s knees. He closed his arms around her.

The fourth week came and they waited and waited for Sadie and Carlos to come through the door. The students took their places. The tango music swelled; work got underway. Janelle looked at the clock, at the door. Baron called the commands, adjusted a few couples’ positions and threw her a glance, fingering the pendants. Everyone seemed stiffer than usual, not quite on task. They missed their inspiration, waited for the golden couple.

“It has to be another appointment or the flu. Or maybe they ran out of money and just didn’t want to tell us.”

“No,” Baron said. “Tango meant too much already. They should be here.”

The fifth week, no show, no call. Janelle tried Sadie’s number but  no answer. The sixth week everyone took their places without a word; if the other two showed, good and if not, well, a mystery. Janelle was on the phone–there had been so much interest lately–when Carlos walked in. The room erupted in cheerful greetings until they saw he was unshaven, hair a mess, and eyes dull. The group gathered around him, hands to chests.

“What, Carlos?” Janelle put her hand on his arm.

“Sadie has a weak heart. Can you imagine her with a bum ticker? Yeah, I knew. And she had more and more trouble breathing.” His eyes filled. “Had to have surgery. She’s not so great.”

It was clear he didn’t know when or even if she’d get back. But she was home. Their shock and sympathy were a soft murmur.

“We’ll go see her, okay, Carlos?” Baron spoke with firmness. He grabbed the tango CD from the player and got his jacket.

Janelle got her coat and one by one they all prepared to follow.  When they trooped upstairs and the neighbor who’d been staying with her left, they squeezed into the bedroom where she lay, eyes suddenly wide. It was a little strange, being in this intimate space with someone who had seemed far different. Her presence had been so big at the studio. Now, she looked very small.

The new friends shared encouragement in near-whispers. Sadie listened and an easy smile usurped her frailness, while her eyes tried to hide fear, pain, grief. She seemed nearly transparent. So young to be lying there. Such an ill-begotten and terribly unwanted thing possessed her. But she held out her hands to them in thanks.

And then the music started. She heard the tango boldly wending its way into her room with its smooth, sly beauty, sensual and bittersweet, wrapping her in vivid life. She closed her eyes and she was dancing, feet strong and body lithe as she pulled it into her faulty heart. Carlos was there showing her the way. Her spirit leapt. There were lights like stars and a broad swath of velvety blue and she danced right to the moon. It was what she’d needed.

Carlos sat on her bed to make certain her chest rose up and down and he felt the music seep into her marrow and his. The crowd filed out of the bedroom like a collective sigh.

Baron and Janelle called out to the two left behind.

“See you both sooner than you think!”

“We’ll pray for speedy healing and more dance!”

The music played on. Carlos lay beside her and stroked her face. She breathed his tenderness and they fell asleep, tango taking them away._wsb_410x262_CornerT

Heart Chronicles #18: Risking Our Lives, Part 2

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( Map engraved by Daniel Stoopendaal, 1730)

Each body is a map of a universe, a living, breathing cartography. We carry the routes of our life travels within our flesh and bones, and our powerful feelings and thoughts can detour or bolster health. Just ask any heart patient how the most responsive and crucial organ in the body must be cared for: just like a beloved. Most of the time we can count on microscopic cells and complex systems to respond heroically and rejuvenate what is necessary.

But on the stairway that day, perched between safety and peril, it seemed all my body’s wisdom was failing. It was clear I had to start the brainstorming phase. But how to explain to anyone else what I didn’t understand?

By early March 2013 an old problem with low-level dizziness worsened. It hit me before I opened my eyes in the morning, unmoored my day, then haunted my nights. Between my vertiginous head and trying to stay upright on increasingly unsteady feet, life certainly lacked buoyancy. I ended up in physical therapy for the inner ear issue and it resulted in excellent results. Of course! I thought. It was that old beast, first diagnosed as labyrinthitis in 1999. Relief replaced dread. I could handle this one. Six weeks later my head quit its surprise spinning.

Still, if I was honest, my gait wasn’t yet quite right. I couldn’t perform basic balance exercises well. D., my physical therapist, noted my legs were far weaker than they should be for someone my age and activity level. I was still trying to stay active daily by walking two miles, and would hike on week-ends.
I took a breath and started to enumerate the odd symptoms. It had been gradual, cumulative. I had ignored most things, like little spasms and ticks or the day-long cottony brain. The drugged feeling like I hadn’t gotten sleep enough although I usually did. I had not been alarmed a long time. The last six months? A bit frightening.

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( Da Vinci’s Study of Arms and Hands, 1474)

It was the first time I stated it all aloud and fear grabbed me, made my innards quiver.

“Poor muscle control, weakness in legs, arms with a weakening grasp–have a very hard time opening jars or holding onto pens or really anything. Cursive is terrible when it used to be nice. I have burned myself badly with a curling iron many times because my hands and arms are so weak they just lose their grasp. I can’t seem to routinely control where I want to place my feet or hands. I drop way too many other things. I even just…fall over. I lose strength as my feet hit the ground. I have deep random leg pain and cramps that wake me up at night. In fact, I have little muscle spasms all over, at times. I can’t calculate what to do with my body like I should. I mean, we usually don’t even think about it, do we? It’s like it belongs to someone else…I reach out a foot or arm…and nothing works right. I feel… spongy, unstable even sitting, tired out. I get funny nerve shocks. My mind is pushing through a cloud and sometimes I feel like I lost a minute… Each day takes all I have, especially the last six months.”

There. Done. I had lowered the last barrier to finding out the truth. I wanted to laugh and say “I feel like an alien sometimes–body snatchers got me..” but it wasn’t humorous now that I had spoken of it. Speaking dragged me out of denial, that age-old coping skill I had taught my addiction and mental health clients about. It works well, until it doesn’t.
Still, I worried D. would find it strange, extraordinarily so. I waited as she put a finger to her lips and thought a minute.

“Well, I have to tell you I have some other heart patients I have treated. Some of them take statins like you do. They at times report symptoms like you describe. I’m going to get you some research I found and then you might consider calling your cardiologist.”

My mouth dropped open. Statins? The now-common cholesterol medication that also supposedly decreases arterial inflammation? I didn’t have high cholesterol but with heart disease “high” means another thing altogether. I did have inflammation issues. I had taken a statin since the first stent implant in 2001, a second in 2003. It was deemed necessary. What would Dr. P., trusted cardiologist, think?

I took home the research and studied it. There were my symptoms and more on pages of paper. “Statin myopathy”, translation: muscular weakness. “Statin muscle toxicity”. Muscle pain, fatigue, heaviness, stiffness, cramps, balance problems with attendant coordination issues. The papers went on to describe much of what I experienced but not all. The most startling note was that physically active patients experienced more symptoms due to intolerance of lipid-lowering therapy. I read one study that stated around 10% of those who took Pravastatin at 40 mg, like myself, suffered from muscle-related symptoms. Many patients didn’t note the symptoms as they were gradually induced and often dismissed at first. (Note: taken from Cleveland Clinic Journal of Medicine June 2001 vol. 78). No less than fifteen other diseases could be confused for statin muscle toxicity. I read the other indicators of those most at risk of myopathy but they did not ring a bell. It could be just my luck of the draw. I made an appointment to talk with Dr. P. for whom I hold much regard.

As always, he opened the door with a warm smile, shook my hand and got down to business. I had expected that he might take it all in and say, sure, there is some reason to think the statin might be the issue, and then remind me that I had aggressive coronary artery disease and required this treatment for as long as I lived. The end.

“Get off it at once, ” he said. “You look ill, you’re having a terrible quality of life and I wish you had complained before. One to two percent of my patients can’t tolerate statins and have similar negative effects.”

“It’s been subtle over the years; I didn’t realize it could be anything serious until recently. But it has been bad…”

His green surgical scrubs and rubber clogs were still on and for a second I wondered if the person he had operated on was recovering well. His eyes held mine. “I want to make sure it’s the statin. If it isn’t, there are some sinister diseases like MS and ALS that we need to investigate…”

Dr. P. always tells me the truth. It is what I like to hear and part of his skill. He noted it was a risk to take but my cholesterol was quite low at least on the statin, blood pressure was very good and I had taken excellent care of my overall health. I was to return in six weeks. I would either feel better or I would not. After he listened to my heart–“sounds good”–he put his hand on my shoulder and gave it a small squeeze. I knew that gesture. It meant he was hoping for the best, cared that I get better.

What does a person do with information that is affirming while not necessarily reassuring? I did nothing. I stopped taking the statin and went on with my life. I prayed for Divine guidance and compassion and got both. I wrote and walked every day and enjoyed the outdoors as always. After a week, I felt something change, a little less fatigue, a few less twinges and spasms. I said nothing to my husband but waited for him to remark on my gait and energy. Within ten days Marc told me what he saw.

“You seem different. It’s hard to explain, but you’re thinking and moving faster and better. You’re stumbling less, I think.”

“Yes,” I breathed and went on with my life.

And so it went. Each day I felt more awake in the morning. My feet hit the floor solidly. I could get to the bathroom without tilting and grazing the walls. I reached and grasped onto things. My feet recovered quickly if they stumbled; they rarely got hung up. Walking felt so good and I felt so strong that I wanted to walk another ten blocks, crest another hill in the forest. My mind cleared so that words clicked along without hesitancy and words rose out of a sunny place, not a gray, misty one. My typing could almost keep up with my thoughts so writing was a sweeter release.

The experience that told me I was on the road to health was how my feet wanted to dance. I am not a dancer now but I love to be in a lot of motion (unless writing) and adore music. One morning I felt acutely attuned to vast energy moving through my limbs, down to my toes, throughout my whole body. My feet felt strong, steady on the floor. I began turning and dancing. It felt like being set free. It was a perfect combination of lightness and gravity. I knew then I was going to be alright. In fact, I feel better than I have in years, long before I fell gasping to the dirt in the Columbia Gorge years ago, on the precipice of death.

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When I saw Dr. P. in six weeks he said upon entering the room, “You are so much better! I can see how you sit, like you are ready to get going. You LDL went up forty points, so we do need to watch that. You owe it to yourself to stay alive in the best way possible, which means having a good time being here. You’re tough–most people wouldn’t put up with those symptoms so long.” He laughed softly. “So since you’re so tough, get out there and get to work! You must increase your exercise so it is more vigorous and eat even better. Call me if you have any problems, and don’t wait to call. I’m very glad you’re better.”

Can we celebrate? Is there a truly happy ending here? I don’t yet know. It’s much more than I had hoped. I thanked D., my physical therapist, for her knowledgeable response. Medicines can help or harm; this one is no good for me, at least right now. I have relied on it a long time so getting off it is risky in a way. I will research alternative aids. I will eat more fish and take fish oil, ramp up my exercise until I can’t do any more, get my lab work and meet Dr. P. in six months to re-evaluate. I was never told coronary artery disease would be easy to treat or I would live a long time. I agreed from the start of this business to do whatever I must in order to be able to keep diving into this treasure hunt called life. I want to keep this body in the known world. We all take risks, some even unknown, but in the end we exit anyway. I just want to make the most of it.

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Heart Chronicles #18: Risking Our Lives, Part 1

Lilac Farm in WA. 5-10 032For over a year–no, let me be honest, a couple years–I had been struggling through a too small entryway into each new day, legs becoming more unreliable, arms and hands slower to respond, balance off enough to make me shake my head. I had to avert falling over when stepping out of  bed and reaching for my hoodie. The hallway seemed to have contracted, leaving little room for me so that a shoulder grazed, then hit, the wall. I splashed chill water on my haggard face. Put in my contacts and blinked. Stared at myself and frowned. Another morning, another day of something… interesting. Maybe an experience gratifying in some small way at the least and at best, invigorating and even shot through with a brief mystical moment. But where was the get up and go, my genetically-derived indomitable spirit? Come on, I urged myself. Go forward. Complete shower, eat food, get organized.

And so I did. I learned from the onset of life that to fully activate one’s mind and body meant activating one’s will as well. It is the historically American way, anyway. And there was so much to learn, accomplish, and puzzle and even laugh over. Whatever the days and nights brought, a primary rule that powered my living was getting up and going despite days feeling ill or blue or just plain distracted by multiple options. I tell you this so you have the stage well set. I naturally have some less than sterling characteristics, but not sloth. A modicum of eccentricity, yes; a lack of motivation, no. A loquacious complainer at times but not a self-pitying bore when life gets bumpy. And for those of you new to my blog, it is important you know I was diagnosed with aggressive coronary artery disease at age 51. There were nearly zero risk factors for early onset of any heart issue. It seemed a mystery. (See  other “Heart Chronicles” personal essays if that diagnosis resonates.)

Anyway, by the start of 2012 I simply “acted as if”–as if I felt energetic, well, able as ever. Unworried. I addressed all tasks at hand and attended to others’ needs. After I quit my job eleven months  later (I was done with that situation; I wanted to write), I luxuriated in newfound freedom from twelve hour days as a counselor. Still, I had expected to feel better than this, to fairly leap from bed after soothing hours of sleep. I’d imagined a garden pathway that took me to–well, how cared?  Stress levels had finally decreased which was great–less cortisol production equaled less inflammation in the arteries. If I was in a quandary about my life at moments it seemed reasonable: what came after the paycheck that afforded us some nice bonuses? What came after years of assisting others because it fit me well and I, it?

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Maybe I was depressed and didn’t realize it. (I was a counselor–didn’t I know the signs by now?) But the fog that inhabited my brain increasingly harbored a voice echoing from an unknown frontier. This isn’t right! I heard, and told it to pipe down. Be calm. That was the way to do it, do anything. Patience, calmness, and thorough assessment of a problem were excellent tools, especially if intuition did not quite cover it. Brainstorming would help but it could wait a bit. Prayer was a necessary ritual. I daily clarified inner and external vision:  Dear God, most Loving Light, walk with me and guide me on the path hewn of compassion; keep me humbly grounded in Your power.

I reached for my teal mug but missed it, hand sliding by with just enough velocity to knock it over. I said a bad word. How did that happen? I stood firmly and snatched the tea towel to mop hot liquid off me, the book pile, The Writer and Architectural Digest and my daily list of goals and priorities. The damp pages and pulsing spot on my leg brought a sting of tears. I got up with empty plate for the kitchen counter: made it. I headed to the washer to start laundry. Each armload of clothing felt heavier; my arms began to ache. I turned to the dryer and the effect was forgetting where my feet were. Catching myself as I fell sideways, my hands hit the wall. Steady now.

Another day under the Big Top of life, where the show limped on. I was getting aggravated by it all, chastised myself for not overcoming this trial. It had to be an old vertigo resurfacing as it did occasionally. I took some OTC motion sickness medication a few times a week. It helped but not enough.

I had already injured my shoulder from a fall earlier in the new year. Climbing rocks around Pacific Ocean tide pools, jumping carefully from spot to spot, I had mis-stepped, slipped on a mossy area and could not catch myself. My arms and hands heroically rallied to stop the slide down toward the sea but too slowly. The right shoulder took it hardest. I had been stunned. Not by the pain but by the fact that this was the second time in six months I had fallen at the beach. The other time left extensive bruises that hurt for a couple weeks and a testy scrape. I should have been able to avoid both. There was a reason why I loved the outdoors, had been a figure skater as a youth, loved to dance. I had trusted the strength and agility of my body even as the decades slid by. But now nothing was paying attention to the automatic cues of my biological systems.

A shiver of anxiety, then again the thought was tucked away to ponder another time. I had a life to live and live well.

But no matter how much good rest, exercise and nutrition I got, the symptoms continued. Why was writing checks harder? I had stopped enjoying handwriting cards to friends and family. The pen would not cooperate; the letters were unpredictable, sometimes loping away from me. My daily walk habit–for my heart, for peace of mind–had become more than small adventures. It became a challenge to see how long I could go without stumbling over a tiny buckle of sidewalk, tripping on a twig, stubbing my sneaker toe and nearly falling once forward movement began. Gravity was not a reliable friend. I felt like a barely contained drunk on the loose some days, when I hadn’t had a drink in well over twenty years. I was chagrined.

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Marc, my spouse, noted the changes more often and asked me what I thought was going on. I laughed it off. See? I have great reactions ultimately so I don’t splatter all over the pavement! But he wasn’t too impressed.

“You stumble over your words more, too,” he said softly.

“Well, I don’t talk as much as I used to every day. I am not any longer addressing groups, presenting material. I write in solitude so I get out of practice, you know? Besides, I was actually in a coma for a bit there in 1986, remember? I lost some fluidity in all faculties. Took awhile to reset my nervous system.” I half-laughed. It was long ago, something I can mention without horror, anymore.

“Yeah, but you almost entirely recovered. You’ve always had a very fast mouth and a quick brain…” he noted fondly, then fell silent.

I married a bright man. He likes to create his own Sudoku puzzles, design labyrinths, solve logic puzzles. I caught him taking a Mensa quiz; I know it wasn’t that tough. He reads about statistics for fun, which strikes me as arduous pleasure. He is paid to be an expert problem solver. But I didn’t feel like consulting him one bit. He likes to think of me as in overall glowing health, for one thing. I need to stick around. I just did not want him to know the whole scenario. So we kept walking daily and hiking on week-ends. I did my exercises. And danced when alone, wheeling about the living room, feeling a bit like a top out of control. I pushed myself. When things are challenging, overcome them–that’s how human beings do it. I more often slept in later,  ate better and less, felt more relaxed than I had in years of working in the non-profit sector.

It had to be because of aging; small changes occur and then voila! you are older than you ever imagined. White hair was finally worming its way into the brown strands, making it a bit curly. Plus, as a woman with a tricky heart I knew I was already enjoying extra years. I decided to take extra care of myself and keep going. Maybe call my cardio guy if my chest started to flash me any warnings.

I embraced writing daily which feeds my entirety, every inch. I stuck to my goals, and soon my poetry began to be accepted once more for publication.

I had been adapting, I realized, to the symptoms for a long time. Rallying human that I am, I adjust a little here and there and fix my attitude. It often works well. Great health had never been a given, anyway, with one chronic ailment with me since childhood. I was writing, learning, discovering. I got to be outdoors any time I chose. I could read all day if desired, listen to music I had long missed. There were people I loved and who loved me.

I had gotten on a boat to a potentially sweeter way of living–perhaps it was “semi-retirement” or maybe a lovely detour–so I wasn’t going to turn around any time soon, no matter the obstacles or risks. I settled in. Then one day I was going up the stairs with a grocery bag in one arm. My legs felt both wavy-boneless and heavy. With a twist of terror I felt myself falling backwards, my hand catching the rail just in time as the bag tumbled down. I started to see the future. It was not looking all that kind.

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(Please come back next week for Part 2 of this post.)