Tag: fibromyalgia

Howling at the moon

Right now, i feel like Godzilla.  i am stomping through-out my house, absolutely graceless, quivering with agony.

The dog must have eaten something particularly appalling, because he has been sick all day, taking out every blanket, towel, sheet and quilt covering every soft surface in the building. He even nailed one of the cats. If he weren’t still begging for food and acting ridiculously cheerful for one so gastrically challenged, i would be more worried.

Thankfully, i think he will make it through this prodigious mess.  For the past two hours, he has been content to sleep on yoga blankets on the floor.

As i watched him suffer today, i realized, i don’t think i am doing much better.  Most of the time, i force myself into this state of magical denial. All is well, my body loves me, i can do anything – and then, on the odd night, all the illusions are stripped away. No matter the power of distractions, i start to feel it. pileoartMy mind starts to list all the things that i have to do, projects on which i have fallen behind, all the price paid for my current situation. Between the physical discomfort and the psychological torment, i am reduced. What remains is the most brutal fundamental: i am suffering and right now, there is no miraculous solution.  i am stuck with this pain, with this frustration, with the sheets being slowly cleaned of various disgusting things, so i can’t even lay down and take what comfort that could bring.

Thwarted, i did what i do – i made art.  Now that my brain is coming back to itself, realigning after stopping the antidepressants, two qualities have returned to me: the need to create and the hatred for being idle.  No slack is given for feeling this desperately bad, other than to shift what work i would do.  Since i could not throw as i had planned – i started working on pen and ink drawings.  The stack above includes most of the poems and drawings of the past three days.

dieoflonelinessPoem after poem poured out of me.  Drawing after drawing.  i lost myself in the world of art, and delighted in it as long as my focus lasted.  For the past hour – between one and two am – the pain finally reached the stage where i could do nothing. i howled at the moon, absolutely impotent against this misery. But in the silence between breaths, i kept staring the pile o’ art i had made.  Tears of rage streaming down my face, i looked over some of my favorite poems from today. i was comforted.  One soothing thing in the middle of the boiling cauldron has been this recognition: i have finally become a champion of my art.  i love these poems.  The images are smooth and i find them lovely.

Even on a night like tonight, when i am shouting at the laundry for taking too long, when i am wild with distress, when i ranted at the moon about the injustice of these ridiculous burdens, i have made some beautiful things.

And, i am grateful, even in this agony.

The energy of pain.

If you were sitting across the table from me right now, watching me fidget and listening to me laugh too loudly, i would tell you: this is the energy of pain.  For months i have been retreating as often as i could into mediation and stillness. The sensation of being inside this skin was so overwhelming that i hid inside the sanctuary of solitude and quiet. As a result, my ability to listen to my body is stronger than it has ever been. So, trust me when i say that as i write these words, the energy of pain sings in high relief within my awareness.

Before it gets incapacitating, pain can create a perverse surge of energy.  Perhaps this is actually the need for distraction, building up inside until it starts to burble out in images, in stories, and in attempts to work that feel more like spasms than anything useful. Limbs cause enough discomfort to keep me from standing for a long time. Twelve days out of surgery, i have to keep myself from lifting heavy things. My body needs me to be conscious of my limitations.

The miraculous shift in my flesh has made such self-restraint chafe.  i want to do and go and be! The pain is so much better! Optimism so fierce that it borders on delusion has returned to my soul! Quietly, slowly, my internal engines of inspiration, discipline and resiliency have started to churn once more.

Months ago, i made a resolution to be kind to myself. i renewed the vow at the beginning of lent (giving up my tendency to verbally abuse myself when i am in distress.) However, after so long down, after ten months watching my circumstances disintegrate while my body could not function well enough to fix the problem, i am welcoming any energy that comes to me – even that which carries this unpleasant hue.  i cannot repress the feeling that all will be well, simply because one simple surgery could change so much.

My uterus, the tumors that were trying to break out of it, and about half the load of pain i had been bearing were removed in a four hour long operation. (According to one of the surgeons a tumor that was peeking out of the organ had its own tumors, like little unwanted ears.  No wonder the process of removal took some time.) The first thing i said when i came out of anesthesia was “Oh, my God, the pain is so much better.”  And in the days following surgery it became even more apparent. Recuperating at a friend’s house, i felt like i was taking advantage of her kindness.  Despite the incisions, i felt stronger and more able than i had for at least a year.

i can tell my body is wounded and healing.  This has done nothing to fix my hips or my problems with my spine, not to mention fibromyalgia, diabetes and the other health issues with which i struggle, but this current level of pain does not incapacitate me.  Even with the buildup of energy that i am experiencing right now, i am coherent enough to write. i am aware enough to be filled with ideas and inspiration.  i could literally burst with hope, simply because i am no longer feeling completely impotent inside my skin.

Before surgery, i kept thinking about my journey. The part of me that tried to get pregnant for twelve years mourned. All the hopes and dreams that i had lost over the years passed through me like shades, giving me the opportunity to ask them to leave, to be carried out of me with my womb.  Once the hysterectomy was finished, i was filled with a sense of peaceful closure. i will always feel some grief over the family i never had, but the contentment is greater. Even more profound, i accepted something that i had said before but never quite let settle down into my cells: i am the end of my line, which means, damn it, i need to stand up and make this journey worth all the trouble and suffering.

So, if you see me over the next few days, and i am bouncing or drifting on my feet, talking too fast about random things, getting so excited about the thought of making art and crafting story again, please forgive me. i believe i am finally able to dig myself out of this hole, and i am marshaling whatever forces i can toward that goal. The energy of pain can be off-putting to the people around me, i know, but please understand, i am giving thanks every single moment for the fact that my body’s burdens have grown lighter.


cognitive impairment and the ego

Lately, my brain has been having some issues. For example, words escape my grasp, playing hide and seek among my neurons on a level that they never have before. I think I am doing one thing (like standing) but actually wind up doing another (falling). More disturbing, I am having difficulties with both focus and mental nimbleness. Some nights my vision is bad enough I can’t read, even with the reading glasses, much less remember the new information passing frictionlessly through my mind. Too often I cannot muster the concentrated effort needed for prose writing – which is when very short poems come into the world. Thank God these impairments have not been constant, and the degree of severity varies wildly (getting much worse when I am tired or in pain), so there are still moments when I feel like what passes for normal in my life. Again, thank God.

These issues have had an unexpected side effect, though. One of the things I love best about this life is enjoying my mind. Being able to communicate clearly and to learn quickly are exciting, awesome things. Transforming my whole being through learning something difficult, complicated and arduous feels even more fulfilling; mastering the hard fought is pure delight. The dreams and stories that flowed through me – both as distractions and with more serious purposes – have been delightful.

I was attached to the thought of intelligence, to the perception that with enough studying and effort, I could master most subjects. Alas, those illusions have been stripped from me more than once. Feats of cognition can no longer be taken for granted.

Surprisingly, this has not been as devastating as I would have imagined. Even my attachment to being smart has weakened. Do not get me wrong, I am concerned. I am doing what I can to make it better. However, even my mind is not me; the awareness behind my eyes goes on unimpaired even when I feel fuzzy or when I can’t remember what I am doing, or when I realize there is no way I should be driving at that moment, or when I cannot move through a room with anything resembling grace. Indeed, even when I truly and deeply mess something up, I am not defined by what I did. Neither failure nor success are the Truth of me. Even when I cannot do the work that I so love, and fall very low because of it, neither the impairment nor the sorrow are me – no more than cleverness and creativity define me when they find me. I do not cease because my thinking has stalled. Realizing this has helped with meditation and quieted the random thought machine that used to compulsively churn within my skull. My need for distraction has lessened.

Acknowledging that the impairment and sorrow were not the sum total of my being took time but was fairly easy; however, divesting from my obsessive attachment to cleverness and creativity has been harder. In a perverse way, these unpredictable mental brown-outs helped, because I could be stuck within this frustrated cloud of blurry confusion and still so clearly be there witnessing that the intelligence was not me, because apparently I can exist without it, even if the universe within my skin weeps at the prospect.

This breakthrough is making it easier to realize I am also not my emotions, or my reactions, or my failures, or my loneliness, or my relationships to other people. My anxiety has quieted because I am frequently reminded that I have no control and that I make the most of my high functioning moments, whenever they come.

Perhaps the mind is always one of the greatest attachments; it was one of the cornerstones of my ego. Releasing my white knuckle grip on my desire to judge my merits on the quality of my mind feels both freeing and terrifying.