A lot of words to remember...

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A lot of words to remember...

I am laying here in my nest; back supported, legs propped, butt sore, mind a constant whine to roar. I am so fricking discouraged and who wants to hear that?! The long sought and briefly attained resilience I caught like a moth in my hands has disappeared into the night while sleeping. I awake with my hands clinched and cramped and my ankles twisted and the deep ache I feel in every inch of my legs and feet and my arms and hands and my flanks erupts when I stand and I swear I feel as if the pain is mocking me. It is all too familiar, yet also such a reminder of the days where I awoke and climbed out of bed and woke the boys, made them breakfast with yes, the pain, but the manageable pain which did not haunt the day, scaring away appointments long awaited, and so much joy. The joy of being able to walk through the house without counting the steps to return to my respite recline. Praying the relief will arrive before my son’s next show I cannot miss, knowing I have already missed so many I will never get back.

I have improved managing the high wire; canceling today for the big event the day after tomorrow. I have shown up more regularly in my sons’ lives, a boon of the handful of strong days and also grace. For it must be grace which allows some nights sleep to be only that, sleep, though fitful and wakeful, but void of spastic tangling of limbs which is neither cause or effect, but proof of something wrong at the top of my spine. The sameness of the pain, searing concrete, dull, deep, breathtaking and heart palpitating, all everpresent before the last surgery.

I recall now how a pocket of return to health from the dreaded failed low back was the window when my original total body ache arrived with a vengeance. I understand how someone who wants to believe that such meanspirited timing could not in fact be a straightforward medical condition. But it was and the evidence was already collected, of a spine which had been blown by herniations and surgeries since I was barely more than a child, images and reports. The abnormal reflexes were noted and retested and still, there was just so much doubt. Why was it they, really just one doctor in cahoots with another, but why did they need to doubt the findings and look for the ghost of freud’s hysteria. I know it was because I was a woman, but still for them to discount the medical evidence in search for the invisible defect within my psych, I felt as if they saw some fundamental flaw in my person. There was a flaw, an insecurity; some part of me either believed those witch hunting quacks or simply didn’t hold enough faith in myself.

But for my faithful surgeon. The inevitable critical surgery on my upper neck exposed the severe spinal compression, though the recovery was marked in years. Still his opinion only matters when I have given up hope of untangling my own limbs in the dark of night while I sleep. In the meanwhile I endure voodoo smoke and pins and mirrors from my own pain doctor who still speaks only of yin and yang and fear and trauma of a kind which is invisible; surprised when the visible proof was found and corrected. Surprised yet still somehow, someway unacknowledged. So when I see him each month and I describe what I know, WHAT I KNOW! he looks at me with compassion and truly sees me as brave, yet he never ever allows for the possibility that the injury is of real physical consequence. He speaks of ghosts.

Why does his insistence on ghosts in spite of evidence haunt how I feel myself, and worse how I envision and fear the next doctor I should make an appointment with will view me. Two plus years of doubt before the last surgery only made the real cord lesions so life altering, scrambling relays inevitably passing through broken circuits. Why do I cower before doctors, apologizing for my pain, my disability?

And here is where I sit again. There is something wrong with my neck and it makes my body hurt to a degree that feels simply more than I can bare most of the day, too many days, and I am so afraid. I am terrrified to put myself out there to the derision and doubt which did in fact cause psychic trauma; to be treated when most vulnerable with misogynistic diagnostic derision, spoken about but not to. Those experiences left me with such a fear to seek better treatment, any treatment. And yet I know many more days of this awful spastic pain is not something I can simply wait out. Or not much longer.

I feel especially vulnerable even chronicling this, yet I know it has been good and right and true. It is part of the process to trust myself. It is also because I do not believe my experience is terribly unique when it comes to women with severe pain. The doctor who labeled and shamed me self reported he was the foremost expert on psychogenic conditions, diagnosed more of them than any specialist in the entire country. I wonder if that doesn’t say more about him than it does of me?

I think I also want to be thought of as I was just re-emerging from such a long quiet where I was not seen, not heard, not known. I once was a vibrant human engaged in humanity. This act becomes so much harder when I most often cannot, do not leave my bed. And who am I if I am most often not seen? Thank god for my Tim and my boys. They have refused to see me as anything other than wife, mother, Susan. They see me as grumpy or goofy, fan or fanatic, helicopter even while broken. Somehow they do not make me feel less than; they always help me feel known and loved.

This ^ was the sentence the rest was written to arrive at. Know matter how hard a day of pain might be, know matter how I long for a life more active and involved, I have three of the most generous hearts in my home offering me unconditional love and unconditional forgiveness every day of my life. They also allow me to love them, unconditionally, which is always the most direct remedy for pain of any kind. I think I used to believe unconditional love was a love so full it would rise above daily stress, bickering, anger, disappointment. Maybe that is the way it becomes when we keep working at it. But for now I will be happy, no overjoyed, that I each day have the opportunity to love.

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What I want...What I will do to get there

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What I want...What I will do to get there

I want to live in a world where children are not scared for an absence of a loving hand to soothe.  I will offer my crooked hand to my boys, with all my imperfection; wishing them to be reaching creatures stretching out in times of need & times of giving, learning they are of one & the same.

I want to live in a world where children can raise their voices to the insanity which wreaks havoc.  I will live in a house full of loud chaotic children and instead of muffling their voices in fear of what the neighbors might hear, I will be glad my children are not afraid to be perfect monsters.

I want to live in a world where I find my voice and own legacy as a woman, beyond mother and wife.  I will keep writing, painting, making, and again and again, no matter how many false starts, to remind myself I can still grow creatively, share humbly, and lead a full, rich life.

I want to live in a world where we seize and throw out the politics of cruelty and ignorance.  I will join a thousand revolutions until I find one which catches flame and becomes a wildfire of kindness, of song, of laughing truth to power, of magic which spells I M P E A C H M E N T.

I want to believe I can again find my way out in the world, feel sunshine rain smiles voices; less pain.  I want to see my brilliant sons reach for their dreams, play their music, build their robots.  I will soak up these moments, I will take comfort and pride in baby steps, I will be kind to myself in the rebound days immobile with hurt, I will not give up.  I will not give up.  

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Where reality shows it's edges...

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Where reality shows it's edges...

I used to know MAGIC.  The unseen wonder that occasionally, albeit rarely, slipped into the peripheral space beyond the senses; the same space which holds love at first sight, gut reactions, grief, deja vu.  Magic to me encompassed all of the above and the surest faith that these transient moments were the mere tip of the magic iceberg.

Lately, I tend to rely on dark chocolate, and though it is not to be slighted, it's flavor does not linger nor offer hope.  

The magic I miss had a timeless nature, which accompanied those shifts where reality showed it's edges, around which a hush of pink sang a lyric of more.  A more which was infinite and good and Now.  Never other, magic, when it appeared was simultaneously within and without.  Never the puppet master, rather it held the suggestion of an everlasting, "everything is, has been, and everything will be OK".  I hold a handful of these moments as sure and real as a polaroid, yet yellowed and with curling edges from being tucked away in a box.  I feel some shame that my spirit is the box.

I am the fortunate parent to two mystical boy creatures; talented, beautiful, funny, and so much more than I ever would have hoped or thought to dream up.  They bring me up so close to magic's windows, the view can be cloudy with fingerprints and moistened by tears.  Be it the forced habit of the younger claiming my arm as his own, propping himself against me while we read, or his still certain refrain of I love you voiced as often as he sees me no matter how frequent, an echo of pure absent-minded heartsong.  My recent teen, the elder, makes me work harder as he has little use for me of late.  I know nothing of sports stats, cannot tell a B flat for an E major, and I have the unfortunate role as the mother who believes he should get more than 6 hours of sleep.  Homework of which he has piles, leaves him exhausted but none less committed to the over- zealous nature of marching bands; add in hormones and well he can be a hard nut to crack. Still, likely because he is too tired to remember his restraint, occasionally he forgets and starts a story about a new song, and next sharing a riff he has learned from playing his bass after school, and before he realizes he is enchanting me, he is humbly boasting under his hair in his eyes, baseball hat hidden glory of the friends he has made playing the music he loves and is ridiculously good at.  I sneak in a hug, which he allows for five seconds longer than the usual one, and I see he is well.

Writing reminds me I still know magic.  I still am lifted by the wonder of grace and serendipity.  Maybe the older glimpses of stopped hearts and awe-inspiring sensations of the world standing still were simply the product of a life with room for the profound.  Life today is busier, but still full of wonders beyond reason. Whether it whirr or whimsy, rhythm or melody, fussing or fuming, bass or tuba, each day has a plenitude of polaroids which will serve me in the future when I have misplaced the magic of that moment. 

And dark chocolate has a certain value in a home full of precocious teenagers.

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I protest, I am blessed

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I protest, I am blessed

No longer certain if it is my own unease, haunting
Held breath, homesick after rare time in good company.
Am I so insecure, projecting onto you my fears? 
Or do I see in you so clearly what I wish I was unaware.
Nervous eyes, awkward pauses and ever worse, Pity;
Pity full of questions of what has become of me.
My plan to be a good listener works well to a point,
Smile through your new houses, lawns, jobs, and your 
Pride and joys; blessings in flesh, this I know and exhale.
Reticence forgotten; my lonely, loose lips brag on my 
Husband and two boys. I have been told I boast too boldly, 
Put them on pedestals.  I know this; I also know what they endure.  
I think this is where I forget myself, begin to share our story.  
I hope it's human nature.  It's why I listened to yours. 

They are the goodness which stands down the terror for how
Could anyone loved by these gems ever wish for different air.
And no matter how squeamish I make you or visa verse, at
Home I am mom, I am known, nothing more, nothing less.
This I am sure of, witness in their ordinary childlike glee; 
And if my doubts leave me uncertain I can count on their immaturity.
They can be my holy terrors, in the ever so routine way two boys
Behaving uncensored can bring a parent to their knees.  They bicker
With perfection, by my side is their daily preference; even with
Three floors to roam, they position their noise and commotion
Under my stationary nose.  No pity allowed, little time for shame, 
We simply had to adjust how we lived within our space; I protest,
I am blessed, our King Sized Life Raft has held so much more love than pain.

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A face I cannot face today

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A face I cannot face today

I would rather forget the phone I touch or computer which nestles in my lap

Has an eye which can betray me with a finger misplaced, a prompt to update. 

Not once has the image caught resembled the me I knew; even now, I just looked.

The bathroom mirror does not misbehave nor mock and lock in the shocked disarrange.

Is it as simple as vanity to flee from this self technology or is it more perverse,

So awkward to look unrehearsed.  Disconcerting at least to see the reverse cheek,

Backwards me, only to switch and find no side which I don't want to delete and hide.

 

Behind the camera I delight to chase; snap dragons, elusive, mischievous, distracting.

Challenging to not miss the breath of life, trying to use cheese, to trap smiles in a frame.

They escape, of course; was it because I asked, or even worse yelled cheese and

Forgot to say please?   Forced memories, evidence, inside rectangle boxes

With one boy looking at his lap and the other as his eyes crosses.  The next frame no

Better, back of heads and faces so grave; I get it and put the damn camera away.

 

The question then is why I expect others on cue to face the lens when I protest,

Would rather pretend?  Post a chance glance half a decade old where my face 

Accidentally smiled right, looked the way it should.  I do not understand the

Fad of facing the phone proud and glad, nor the product it seems all but

I can obtain; symmetrical faces and smiles posted again and again, no shame.  

A face I cannot face today; I am vain, still it is a bit silly, I must proclaim.  

 

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