Tag: chronic pain

naked truth

For weeks, i have searched for a way to talk about this through fiction, because i did not want to dwell upon my personal experience more than i already have.  However, telling the truth is what i do best.  And, to be honest, part of the problem is that i do not want to ask for help.  i do not want to talk about what i cannot do alone.

The first person to mention the near impossibility of the situation i was creating for myself was my primary care doctor, just after my divorce.  “Without doubt, you qualify,” she assured me, “with the PTSD alone.” The physical problems – asthma, thyroid disease, diabetes, fibromyalgia (or whatever that diagnosis would be now), the back and hip problems – they would all be gravy.  She all but begged me to accept that I needed to apply for Social Security Disability.

Only, the statement strung me up between two different agonies.  i need to work, for i cannot quite give myself quarter for any suffering – mental, emotional, or physical – but simultaneously, i feel like i am dying by inches, pushing myself too hard.

Regardless of my bull-headed stubbornness, i am drowning financially.  Even though i am working as hard as body and mind are able, i quite literally cannot make ends meet.

This is not a new story, unfortunately.  Nor is it unique to myself.

Over $20,000 of medical debt hangs around my neck like a noose.  This is the aggregate due from years of issues: two major surgeries, a hospitalization, three trips to the ER, two ambulance rides, not to mention every deductible, copay, and uncovered medication. Add to that the small business loan that i got when things were going ridiculously well, that now feels like cement boots.  This past month, in order to pay them, even partially, i had to forgo food, gas money and put off the mortgage for about two weeks. If you want to make me cry, lets talk mortgages.  i finally got it refinanced, but now, eight months later, i will be two weeks late.  The angry letters have already started. Not only am i at a loss for utilities and the cats’ vet bills, i have no idea how to buy the medicines i need to treat the aforementioned diabetes, thyroid disease and despair.

Last night, i wept because the list of things i have bought recently would not stop going through my mind.  i purchased a lawnmower because the grass was as high as my nipples.  My car needed new breaks, because stopping can be a good thing. Then i got $12 of new shoes so that I would have something other than the $5 flip flops to wear to work.  For my birthday, i bought a $28 pair of wireless headphone so my constant need for music would not drive my new tenants to madness.  When i got a promotion at work, two days after my birthday, i celebrated by going out to eat.  Let me tell you, guilt is a terrible seasoning.

For a solid year, i have focused on the regular job that makes reliable money, but its paychecks cover the mortgage, the small business loan and maybe my car payments.  All other responsibilities make me seem like a deadbeat.  Only by the time i am done working this job and making some art, i am exhausted beyond all measure.  Things like selling art have languished.  Too many paintings and drawings are collecting dust.

When i first heard the word foreclosure – only to find out that the mortgage company with whom i had been working for months had sold my mortgage – i reached out to a mortgage specialist.  It was my first day in the studio after having shoulder surgery, and i was still unable to bend because i was awaiting a hysterectomy.  The pain i faced was intense.

“You have done everything right,”  he said gently, “I am looking at how you paid everything off until the medical bills began to pile up…”

i am still digging out.  This month, i am short.  Something will not be paid and i have no clue how i will get the cats’ vetted, my medication purchased or food bought.  Meanwhile, i continue to get messages from clients who have not paid me, asking me if these long standing health issues have vanished so that i can do more work for free. This perception that art or design is not work worthy of being paid for, or that the artist is not worthy of being recompensed for their effort, devastates.  If you value what i do, if you like my art, then this is the time to let me know.

A $100 would pay a bill.  After that, it would be a war within my heart over feeding and maintaining my animals and myself and paying other bills.  The past three years have been, quite literally, hand to mouth.  Desperation has made me put art up for sale again, despite the exhaustion and overwhelm, and with that i hope to at least get the cats to the vet.

However, i bleed over my financial failings.  To a large degree, it feels like i bet on myself and lost – but i knew before i started working as an artist professionally that my health was compromised. Only the call to make art is something fundamental to me, it cannot be denied.  i feel shame that i fell into such disability that i was unable to continue my business’ growth. This fuels my determination to make good on every debt.  Even if i am still making tiny installments when i am ninety, i will pay everyone, even the ones to whom repayment has not begun.  i tell myself – ceaselessly, hoping the repetition will hypnotize me into believing it is true – that things will get better.

Still, i never forget, i am the person who is reviled by those who talk about the poor like we are pariahs.  i have been utterly undone – more than once – because if ill health.  Even now, living paycheck to paycheck, the struggle to maintain this level of activity is punitive. Daily i am faced with the choice between taking care of my health and fulfilling the responsibilities placed upon me. Even making art or writing a poem comes at a cost, wearing me down further.

How else can i live, though?

Being able to work feels like a privilege – and one too many have thought i could not manage.  My friends who are on disability are much braver than i am, able to move down a path i could not.  Unfortunately, i know, someday i may have to follow them despite my best efforts, but for now i am doing every dance i can to keep myself from that excruciating choice.

Whether i like it or not, i have to spend money on food, gas, car and house repair and medicine.  Therefore, i have to burn the candle at every possible point, throwing my work out into this world, no matter how exhausted i am.  Even if i were content to make art in a vacuum, which i am not, i am not going to be able to survive without more income.

So, here i am.

For once i am being utterly transparent about my movies and situation: i need your help if i am going to keep going as a human being, much less as an artist.  Your support will keep my animals and me alive.  If you buy a painting, or a drawing, it clears space for another to come into being.

And, if you are in the same position i am financially, i will be grateful if all you do is share this story, spread word about my art, and use both to build compassion for those of who us toil on fulfilling our dreams and who work our hearts out to live on the razor’s edge between triumph and dissolution.

 

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For a few hours yesterday, i published this blog.  However, i woke up after a night of howling nightmares and put it back into draft mode. The dreams kept going back and forth over the same ground – my subconscious pacing – obsessed with the one thing that i had forgotten to mention.  This blog talks about how troubles that i face came to be and how i have to ground my hopes in art again which can only be done with your help. Talking about the naked truth of my current situation made me feel exposed, more than all the poetry that i have written combined.  Yet the thing that my dreaming kept reminding me of was that i should not be alive.  During the past few years of struggle with agony and illness, i have tried to kill myself twice.  Haunting despair crumbled my heart more than i could describe. It has been because of friendships, unexpected blessings and hard work that i am still here.  i have a job that gets me most of the way to solvency and for now, my health lets me manage it, even if the margin is narrow at times.  i have friends that are unbelievably good and slowly i am coming to terms with who i am at this moment, and beginning to appreciate this hot mess of being.

So, yes, I am asking for help, for understanding, for a sense that i am not howling into the darkness – but i need to leave this writing by telling you that i am so grateful to have made it this far.

the blessing of dreams

i initiated contact.

As with all the false starts and suffering of my life, i am the root cause.  The blame cannot be pushed aside.

Because i wanted to check in, i sent him the message, asking how he was.  What i did not expect was to be confronted by a video of him with a woman i did not recognize barely two weeks after he had left my life.

While i cannot pretend to know the circumstances, i am also glad he has moved on.  The heart demands both: to be celebrating his happiness – that this transition from a place where he felt so alienated to one where he is among family and friends has gone smoothly and well – in addition to the vicious, visceral grief over this loss in my life.

How i love him.

The intensity of my longing left me blind for so many months; when my eyes opened, i had no other choice.  i could not demand from him what he could not give and i could not keep asking myself to sacrifice what i needed.

That sounds so civilized doesn’t it?  Like i am mature and kind.

So why does it feel like glass moves through my arteries to settle down in my toes and fill my feet?  Why does this piercing wail echo within my skin?

i lament whatever it is that seems to make me intolerable. Doubt and fear scream through me. Perhaps i simply cannot be loved?  Am i doomed to lose my friends? Thinking of the tenants upstairs right now fills me with an irrational sense of dread. How did they manage to abide my presence tonight? My partner would have rolled his eyes and been angry at me for overextending. Of course, he would have been able to soothe the physical distress away – but it would have been a chore for him. There would have been sighing and a stern reminder of my transgression. Instead of just dissolving in insecurity, i also would have been corroded by guilt.

They seem to get along with me now but what will i do or say that will drive them away? Will i start coming home to people who would rather avoid me, again? With all the storytelling i have been doing, could i even blame them? What in specific will spark the transformation? Will it be that one joke too much?  That inappropriate comment?  The wrong name or pronoun given voice by the scattered thoughts escaping my mouth? i cannot let my mind wander to the social stresses of work, or i will be trapped in this despair forever.

If i were not this useless person tonight, i would have been praying more fervently, a disciplined outreach to the Divine.  Only, when i am in this kind of state, i feel irredeemable. It does not matter on which sex or shading my anthropomorphism fixates, the Deity could not possibly look upon me with compassion, much less love. i am rapidly descending into the place where all i can articulate is my own worthlessness.  My lover could not love me back. Our entire relationship, in so many ways, boiled down to the rolled eyes of exasperation. My body is unbelievably angry with me.  i am eating like shit, making the whole body hating me conundrum worse. But for the love of heaven, i can only fight so many battles at one time. i am drowning. Even the good things that are happening barely penetrate this veil of suffering.

More than nearly anything, i don’t want to be writing this.  i want to tell you stories of love that work out – that one magical person who can look at me with devotion and joy.  i might wistfully wonder what it would have been like if i could have found that kind of love when i was young. My prodigious imagination cannot quite grasp what it must feel like to look into your beloved’s eyes at nineteen and be certain that you will still be with that person when you are ninety seven.  Or to be that ninety seven year old, still drunk with gratitude for the familiar soul still vibrant inside those same eyes.  What would i have been if i had been cherished?  Would i be on this path, flanked by cement barriers that keep me from deviating, that demands i learn how to warm myself in this vacuum of space, so far from the sun?

While i can still feel my skin, i can tell you it is soft.  The undulations of the body, like waves of the sea, can move with pleasure as much as they constrict with pain.  The harder walking has become, the more i cherish the joys of the senses.  i live for that moment when i am quiet and still, when the pulse in my back becomes a disembodied throb, because i am living within the fingertips hitting the keys or the music pouring through me.

i want to tell you stories about the dreams that flow through my sleep; i want to talk about philosophy and past lives and those moments of connection to the divine. Let me hear you laugh!  Laughter would utterly transform this night of agony.  Help me expand my experience past this skin, so that i can gain courage from the rest of creation.

Only, no one is here to help me shoulder my burdens.

You are a blank page of paper.

All i have to keep me sane – the only form of love available to me – resides in these words.  If i look into my heart, all i will hear is howling.  Somehow, these letters give me gifts that i cannot bestow to myself otherwise.  If word after word tumble out long enough, i start to believe in possibility and joy again.

i cry out to story, the truest of lovers: carry me away from heartache and this terrible throbbing in the back of my head, that travels down my spine until it hits that bubbling pool of lava tucked inside my vertebrae, somewhere behind the belly button that i cannot feel any longer.  Lift me up like i were an infant and hold me fast so that the safety of the embrace overrides all the weeping.

i wonder to whom i write those words.  The divine?  A character in one of my novels? The miracle that is language?

So many people have told me that they are proud of me for breaking up with my lover, just as they were proud of me for pushing aside my heart-song to get a job.  They point to all the ways my life could spring forward now, the freedom that i have gained, that i have proved i can make decisions for myself, the incredible opportunities that, of course, they see on the horizon.

Tonight, i am not proud.  Indeed, i am humbled almost to the point of dissolution.  If i thought it would do any good, i would cry out like Job, bemoaning my fate and demanding answers.  Only, i cannot forget: i am the alpha and omega of my suffering.  i reached out to this man so beloved today and got my just reward – the realization of how far i have to go before i could begin to entertain the possibility of being with someone else.  i chose to give my heart to everyone who broke it.  My ignorance and my cowardice do not minimize my responsibility. i chose to be an artist.  i chose to believe that i am meant to write in poem and story. i chose to get a job rather than take other roads.  Even if i were to abandon everything and fly away, i cannot escape my failings as a human being.

My body has betrayed my ambition, or vice versa, but either way i am in an unenviable position, torn between what must be done and these punitive limits to movement.  The journey that begins when i rise from bed and ends when i can tuck myself back in comes at a cost. In the shower i beg for strength to get through the day; in the darkness, head against cool sheets, i weep from the stress of pain. While i can compartmentalize what is going on in my heart and soul so that i can get through the day at work, i am running my reserves so low that i often cannot even write when i get home. Exhaustion becomes a form of impotency.

Once the pain builds to a crescendo like tonight, the walls of my compartments dissolve.  If i am lucky, i can stop the destruction through art. On the nights when i am too weary to do so, i have to soundlessly endure, making the ability to create Gratitude Prime. The tragedy of this is that i also lack the courage (although tonight it feels like bone crumbling fatigue gets mistaken for fear) to release the offspring of my spirit – whether it be painting or poem or prose – into the world.  Artistic paralysis threatens to become complete.

i wish Love could hold me, so that the warmth of belonging flows into me, and speak the magic words that would make me believe in my mission as a poet, as a writer, as an artist again.  Oh, to believe that this was still my purpose, to believe i have some form of sanction for this calling, this folly, whether it makes money or not.  Spirit, i cry out for miracles that i have already betrayed.  My heart slams around in my chest, its beats defying rhythm, as i think about how deeply i have betrayed my greatest blessings.  So many others would have removed this vocation from my hands, because they would have seen it as an act of mercy.

“Please, stop torturing yourself.”

“We are tired of seeing you bleed with unrequited ambition.”

And yet, here i am.  The rest of me prays for relief while these fingers keep typing.  If i have anything at all, even the most depleted vapors of inspiration, i will hide here.  That way i don’t have to talk any more about this outrageous suffering.

Let me tell you about the characters in my book that just dance through their pages.  They get to be the outlet for grace my limbs cannot manifest.  Hear about the universes i have created – they are rich and weird and have kept me safe inside the sanctuary of distraction and story.  Give me a way to write about the chaos of our times, how everything has turned sideways and is no longer recognizable to me.  Let’s construct lyrical poems about all the things that are still good.

To keep from returning to my complaints, i can go on about how when i am too far gone for complicated plots, i try to dream like a baby would. Strip the pretense of sophistication away.  Remember helplessness.  i can be held in arms, loved and cherished despite not having coordinated limbs.  Listening to the heartbeat of the one so steadfast and strong, i would be drowning in the most simple of loves.  You love me, i love you, there are no strings to that, no demands.  i can feel the arms around me, i can hear that steady rhythm, i can remember what absolute trust that kind of love requires.

That, i swell with ecstasy at the truth of this epiphany, is how i think about the Mother-side of God. i can be safe within those arms, cheek pressed against that warm chest.  It is the heartbeat of creation i hear. i dissolve in the golden light of belonging.

Then i would dispense with poetry for the night, as it requires me to live too deeply in the body.

i do not want to write about that.

Tell me what it feels like within your soul to love and i will confess to you that the hope and strength and a ridiculous capacity to muddle through actually spring from my ability to love not only strangers, but people who have hurt me or failed me or just turned out to be assholes.  In an ecstasy of exhibitionist conversation, i will keep confessing that this resilience and love all feel like madness during nights like this one.  i will weep over how it feels like people are growing more selfish, colder, turning brittle in their certainty.  But with my next breath, i gather up my broken pieces and tell you that miracles can happen and it all might change on a dime. Transformation can sweep up this sad, round little body, all the people i know and love, all those i work with, all that travel these roads i do, everyone in this state, each soul in the country and the world.  Just as i cannot point to one thing and say, This was the moment it all went wrong, i would not be able to say This is the moment everything got better. The change would be too fundamental to remember how it was before.

That uncertainty leaves me smiling.  Indeed it makes the green electric wail screaming up and down my spine seem like a celebration of life. i hurt, ergo i live.  Not to mention, things are changing even within wretched muscle and nerve.  i have been prone for over an hour and i have begun to feel the screaming in my legs finally make it through the lava in my back to my brain.  That settled glass is now sharp and tearing into my feet.  Surely that is a good sign, even if it keeps me from sleeping and brings on fresh tears.

It gives me time to close my eyes and reach out into the worlds that live within my imagination.  So many voices clamor to be given birth.  Stories float by like gifts to be unwrapped.

Perhaps i am more like Job than i thought. During this lifetime, i have lost my family, my husband, the partner that i still ache for, the chance to have children, too many friends, and all delusions that i am anything other than a hot mess.  However, inside the realm of fantasy and dream, i have a mother and a father and, depending on which story i choose, a lover or a husband or a breathtaking contentment in solitude.  There i can dance and sing and run like the wind.  If words fail, i can paint the most amazing pieces against the canvas of my eyelids.  The hands of dreams can sculpt in a way no manual digits could. This is the most intimate art, the sublime shards of blessing, which rises up within me for no reason other than to get me through.

  Job got his health back, his wealth back, a new wife, and better children to replace those he had lost – although i imagine the way it was all taken away left a permanent scar.  Either way, God’s favor shone on him again because his faith never wavered.

While these words are wet with tears, i cannot hurl my rage at the Divine.  i am too aware of my culpability, my free will to screw up.  And, before, i have had miracles but lacked the internal fortitude to build my future upon them.  So, i have to look at these lines, begun in a moment of excruciating rawness, as the blessing.  They are enough for they have transformed me from a babbling, self-pitying fool into an inert pile of gratitude.

i am learning more every day how to give what i have lost to myself.  Granted, the configurations of love will not be the typical ones, certain opportunities have been lost. If the scars never go away, i have at least learned how to embrace them. Joy, depth of experience and appreciation for every breath weave their way through my days, even if they have to move underneath a veil of darkness.  Letters drop like rain, eventually becoming an ocean of comforts that will be unique to this particular, peculiar experiment in humanity.

All i need to do is make art a rope to pull me out of my suffering, give thanks for what i have been given, and release myself into dreams.

the face i dare not show

Again, today, i heard something familiar.  When discussing anxiety and the trouble it can cause, the person i was talking to smiled brightly and said, “Yeah, you say you have anxiety, but you always look so cheerful and confident to me.  I don’t think it’s real.”

At first i felt frustrated.  Her image of me spits in the face of the reality i know.  Then i realized, to her experience of me, she must feel fully justified in her opinion.  There are faces i dare not show.  She only sees me on my best, bravest days.  For, thank heavens, i have days were i can walk through the world unhampered. Whether it be from medication or a sense of duty or just a miracle from the divine, i get these gifts of days when i am useful and reliable. Responsibilities have always had enough power over me to push me past fear and worry – only, i tend to fall apart when i get home, once the adrenaline wears off.

Yet, on the highest anxiety day, no one will ever see how fear and self-loathing can cripple me, because i will be hiding behind locked doors with the computer and the phone off.  Pain feeds the anxiety, and they will amp each other up over the course of time until i am rendered impotent. If you come to check on me during one of those spells, and knock on the door without my expecting it, i will hide in the bed, or crawl into the tub where no one peering in a window can see me, utterly terrified.

On the next step up, i might interface with you through social media or text or email, but i cannot get past my fears to pick up the ringing phone.  i stare at it in mild horror as it bleats for attention. It jars the fragile zen i can maintain while alone. Those moments are what caller ID and voicemail were made for.

Those days, i meditate for hours to keep myself calm.

Most of the time, i feel like an overfilled apple cart, one more apple and the whole thing will fall apart. My wheels will roll off in opposite directions, the structure of my being will collapse into a thousand pieces, fruit flying everywhere.  Worst of all, that new apple could come from anywhere.  Someone asks me to do a job, and i don’t feel like i can say no and i am suddenly (more) overwhelmed.  Another medical bill comes to me, that i cannot pay, because i am still limited in how i can make money.  A lot of days, i cannot check the mail.  The thought of it makes me start to tremble with angst.

The worse it gets, the more impossible it is to reach out for help, because people can be too helpful trying to solve my problems, as though anxiety means i cannot know what will work for me.  For every useful piece of advice, i have also had my heart broken.  What if i unburden my anxiety and someone uses that as opening to stoke my greatest fears (thank heavens you can’t make art so much any more, it was really awful) or my most tremendous guilts (Is that why this paperwork isn’t done?  What do you do with your days?) and the whole rickety construction of coping disintegrates?

Even worse, what if i do ask for help and then i am too needy, i keep talking too long, my need for a sense of belonging or compassion overriding my common sense? When i am in great pain, i distract myself by talking – it uses up so much less focus than listening. i am aware that i am listening too little and talking too much just like i am aware inside a dream.  Seeing that look of boredom or imposition on someone else’s face in response to my yammering can wreck me too.  i do not want to be the one who complains all the time, one of those people who see doom in every moment and cannot begin to have a positive thought or feeling.

For the anxiety, the depression, always live in tension with the joy i get from making art, the love that i feel for my friends, the multitude of blessings that i freely admit exist in this life of stress.

There are those tremendous days when i can move mountains. Thanksgivings pour from my throat until i am hoarse. And, there are the terrible days when no one sees me because i am hiding in a dark house, too afraid of everything to turn on a light.

It’s both.  Most of the time, i am in some kind of middle space – not moving mountains but not paralyzed either – and there’s no magical solution.  Progress can be excruciatingly slow, but inching forward nonetheless.  If i can work, i do.  If something urgent needs to be done, i can often put on the big girl pants, despite the chafing, and get it finished.  Often i am better at a regular job than my own art, because i am less invested in the ultimate outcome.  There are clear rules and procedures that help guide me. i can be glib and funny and am expert at hiding my pain.

So, with me and, i imagine, with many others who have anxiety and depression: what you are seeing is the best of us.  The worst is reserved for my cats, my dog, the two or three people closest to me, and those moments of solitude when suffering echoes around inside my own skull.

 

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.

 

Recumbent gratitude

Bear with me, please.  i am typing this on my iPad, because i lack the capacity to hold my arm up any longer. Right now it is supported by the softest of pillows while all three of my animals have curled up around me.  Alas, this means that while i am comforting my aching limbs, the autocorrect on my tablet will probably toy with me mercilessly.

Still, i cannot help quietly rejoicing. i think i might have turned a corner, (i knock on wood as i type) and if i have this is the cause of much celebration and delight.  For several days now, i have been able to work through some ridiculous pain – not without whining, unfortunately – but i have begun to inch forward.  What was impossible now seems uncomfortably intimidating, but within the realm of imagination and hard work.  Instead of trying to move the mountain with a spoon, i now have a spoon and a pick axe!  Improvement!

What has been making the coals of optimism start to glow, though, is the contentment that has started peeking out between the pain and stress.  The ocean of peace had been well hidden for weeks. Indeed, if i had not lost the way to it so many times before, only to rediscover its shores with the glee of an explorer with no short term memory, i would have mourned its loss forever.  Ah, but that is not entirely true.  i had fleeting moments of contact while i was actively creating, but nothing that lasted once the pen was put away.  Otherwise, i had been wandering the parched, dry land of despair and overwhelm.

But, for three days, i have felt peacefulness’ waters splashing around my feet while i drove, while i struggled with irritation and pain, while i tried to dissect the things i must do into subgroups: what must be done NOW, what can wait until tomorrow, what can be sacrificed on the bloody and fantastic altar of sleep…

There are things i have to urgently address.  My life remains in this long, twisting crisis, caught inside transformation and loss like a fly in amber. Despite that, i must attend to urgent commitments.  Galleries must be staffed (case in point, tomorrow i will be at Artspace in Rockland.) This weekend is the garlic festival in Southwest Harbor, and i will be getting help so this can be done without further injury.  (i am excited for the show, not just because of my new garlic dishes, but because the food is so good.)

For the first time since last winter, for no rational reason, i can feel the certainty that “all will be well” taking root in my soul. More than anything, this inexplicable, perceptible  lifting of mood when the burdens upon me remain consistent convinces me that depression has a chemical hold on my brain independent of circumstance.  Right now, the shadow of suffering still lies across my life, but “all will be well” begins to stand against it, growing stronger and starting to bud.  Like an obsessive gardener, i race to this miracle and try to encourage its flowering. i do all i can to create the best environment, including celebrating the small triumphs like today – gallery sitting, then cleaning the kitchen then loading and firing the kiln.

i am in pain, and exhausted, but i feel content.  The sins of the day – junk food and sodas – helped provide the energy i needed. Instead of my normal guilt, i anchor myself in “all will be well” and once more, i can feel the ocean of contentment all around me.

This lends to every thought and dream the light of possibility; it coaxes my stubborn determination back into movement.  Slowly, i have started trying again.  In the past three days i have submitted my art and writing, sought freelance work, researched more galleries and managed to push through so much pain to do what was on my “this must be done TODAY” to-do list.  And i kept myself from becoming undone by the things i could not do, and the mistakes i made, which might have been the greatest kindness of all.

As i type the kiln is firing and the dishwasher is running.  i did that – me – this broken unit.  i found hope, strength and focus that i did not believe existed within me anymore.

Once more, i find myself crying before bed, but this time my heart overflows with thanksgivings.

 

when art fails

Every so often, things get bad enough for me physically or emotionally, i cannot even make art. Every bit of strength i have is consumed with moving for one moment to another. At this moment, my left arm is being ridiculously recalcitrant – a torn rotator cuff, apparently – and every movement hurts. Even walking, somehow, manages to mess up my shoulder. It’s been a long time since i carried anything heavy in two arms. For two and a half months, this has been getting worse and worse, but now it is impeding everything. i tried to throw the other day, and managed a lot of small pieces, but then wound up feeling much worse. For awhile, my hand was numb, it felt like a spike drove through my elbow.  Indeed, it has kept me from sleeping, or at least, from staying asleep.  That development, i am sure, contributes to my current emotional drowning. My mind cannot shake off terrible memories.  A sense of doom feels unconquerable. i am working toward getting my heart and mind in a better place so i can move forward more quickly and confidently. That said, right now, i am slow and tormented by indecision. Stress and anxiety have become constant companions.  Usually i heal myself through word and form, but today, i could not.

After many hours of desperate insomnia, i awoke barely able to move. Realizing that without downtime i would be very useless indeed, i spent the day with bell hooks, Rumi and Oscar Wilde, when i didn’t nap. The increase in my normal level of pain has left me exhausted. Over the years, I have learned to move through much discomfort, but every once in awhile, i am decimated. Today has been decimation. And yet, for whatever reason, i cannot quite surrender to my misery.

So, i have printed two books (thanks to the wonderful gift of a workhorse printer from amazing friends) and as i type, i’m printing out two years worth of poems.  Between those four works – 2014 poetry, 2015 poetry to date, Practicing Kindness and a series of interconnected stories that normally has me so excited that the writing flows from me feverish and fast – i have used up nearly two reams of paper.  As my words poured forth from the humming machine, destined to fill the next few days with editing, i realized that even on these days, i have a tremendous amount of things for which i am grateful.

 

right on the edge

For weeks, i have been having profound issues physically. Even my ability to produce art, beyond sporadically writing poetry and fiction, has completely stalled. i lost most of the week before last, taking four sick days. For a while, i rallied, although after three days of shuffling through my obligations, things took a troubling turn. i went to the emergency room on Tuesday evening and got home fairly late Wednesday, without any joy.  Everything between now and then has been a blur of misery.

i have been struggling in the most profound way. The smallest things cause tears to stream down my face.  The world keeps spinning on me.  Food has become the enemy, all of it digestible only with intense suffering and pain. Usually, i cope very well with pain – working around it – but this is different.  i am graceless, frustrated, constantly on the edge of cognitive overload.

IMG_2380
poor Martin

i could not even let my cat, Martin, cuddle (he is always starved for love) – the physical contact made the pain one whisker more than i could bear.  Eventually, he figured it out and started sitting beside me, cautiously creeping closer and closer, until i was in a good enough place for him to curl up close and get pets and scritches.  Thankfully, Roxi and Darwin are more self-sufficient, content to sit nearby and rest.

The worst part of this has been how it debilitates me emotionally.  My issues with anxiety get augmented wildly by this level of exhaustion and pain.  Chronic illness can lead to feelings of hopelessness, powerlessness, but this has been a much stronger reaction than usual. i keep getting jumped, every phone call, each time someone knocks at the door, each time the dog barks like he announces the apocalypse, i nearly come out of my skin. i freeze and shudder and cry. There are a few really unflattering anecdotes i could share about hiding until the unexpected passed – and i acknowledge the irrationality of it. The fear is useless and misplaced.  However, this knowledge doesn’t make any difference. Indeed, the feeling of anxiety was so overwhelming and acute that i unplugged the house line for three days, knowing that people could text or leave a message on my cell (the ringer was set to vibrate) if it was urgent. The boweddown_11x14mail piled up, because i could not get to the box, either physically or emotionally.

Today, i was treading water slightly better, and predictably life felt a little more possible, a little less terrifying.  However, no illusion dwells inside my heart.  As i write, i have expended what energy i have, dinner is at war with my gastrointestinal system, and i can feel the anxiety ratcheting up.  Useless worries crowd my mind.  i try so hard to redirect myself into gratitude – this is a whole meditation/prayer i use to get through, focusing on whatever i can find to be grateful for inside even the worst present – but for now, i am a mouse and my fears are a cat.

Still, i am surviving. i am working to make bloodyminded stubbornness a blessing. All i can do is focus on tiny bits of work before i completely lose myself to sleep and pain.  In tiny, baby steps, i am making progress.  As you can see my website and online store are back up and running, i have edited the books i’ve completed this past month, and i continue to write the one that has its hands wrapped around my heart.  And if i remind myself of these tiny steps forward, maybe the rest of the hulking mountain of problems and fears will seem less intimidating.

What a difference a few days make…

loveI write with a certain trepidation, because this seems too good to be true. Knock on wood for me.

While I certainly don’t want to jinx it – and I continue to suffer from some financially induced panic (doing homework for a small business class and paying the bills and buying groceries, omg! Overload!) – I think that maybe my mood has turned the corner.

If you’ve read this blog at all this winter, well what meager offerings I have been able to post, you will have noticed that I have been suffering somewhat. While I know that the troubles I experience are a result of my own decisions, like choosing to work in the arts rather than embrace the insanity that would come with stifling these impulses, the big ugly unavoidable problem has been my health. Without good insurance, there was nothing I could do but move from crisis to crisis, with small periods of vulnerable stability.

My lungs gave out in a big way over the last week and a half, as well as a few other things (back, dislocated fingers, etc.) Because I had previously had to pay hundreds and hundreds of dollars to get maintenance meds per month (which I could not afford) I had been doing without anything to treat my asthma. Until I would get bronchitis. Or pneumonia. Or have an attack so bad that I was passing out. For awhile, I would bankrupt myself to get the meds to keep me alive, but then I would get a bit better, and not be able to justify bankrupting myself again the next month when I could technically breathe. I cannot express how much of the debt I carry is because of medical expenses – one month’s massive need making me have to charge other things like food or being charged themselves. It has been a vicious cycle.

At the beginning of the year, I found out that my cheap but terrible health insurance was getting canceled. Starting Feb 1st, I signed up for a plan with Maine Community Health Options. It costs me over $150 more a month ($380 A MONTH – another cause of financial panic) and seemed to be not much better than the other plan. Until I went to the doctor on Wednesday.

I found out my new health insurance covers my asthma meds! She gave me refills on all four prescriptions that keep me breathing (along with an extra to kick start my lungs and help with the back and hand) and I only had to pay $60. All of them together would have been at least $400 before. I stood there at the pharmacy, nearly weeping with thanksgiving. And this isn’t a one time deal. I will be able to get these meds as long as I can find that $380 a month. The big expense of that $60 was a rescue inhaler, which I might not even need if the maintenance medications keep coming into my hands.

I have only had these asthma medications for three days (Hosanna in the highest!) and already I feel so much stronger and less overwhelmed. Of course, I still have enough work on my to-do list to have three people doing overtime, and probably always will since I am a sole proprietor/artist. Truthfully, I am really not less broken – I still have asthma, after all – not to mention diabetes, thyroid disease and irritating neurological issues. But, with the medication, I can treat at least this one problem well enough to enjoy the movement of air through my lungs rather than wanting to cry with each breath’s pain.

A small thing, really, but something so delightful it is hard to explain its full impact.

The effects of this blessing spill over into evdancingtreeoflifeerything, too. Today, running errands, I was able to spend money on groceries (AARRGG!!! The Spending Money Guilt!!!) and lug them to my car without the help of a friend. She got to go home and sleep before her night’s work! The blessing expands out into the world.

Even the financial stress seems solvable on some level, because if I can breathe without it taking all my energy, and get stronger, maybe even treat my endocrine issues better (will insurance pay for that too?!?), then what new avenues have opened up for me? It boggles the mind!

The only thing that jars my mood, unsettling my celebration a bit, has been this thought: what mountains could I have moved if I had the right to healthcare? How much better off would my business be if I hadn’t had to struggle for breath during these last six years? How many other people cannot afford maintenance medication for issues like diabetes or asthma, and wind up lurching from crisis to crisis. Now my health insurance is still bare-bones. If I have a major crisis – an accident, get some life-threatening disease – I will absolutely financially implode (high deductable! lots of things still not covered!). Ah, but I do not want to dwell on the negatives and the injustice of healthcare in the US right now. I am deep in a state of (anxious) gratitude.

I want to tell you that being able to breathe deeply, to feel air fill all the functioning areas of my lungs without labor, to be able to hold it for just an instant without coughing, to release that breath without searing pain – this is JOY. This is a blessing. This is something marvelous – and this alone has helped to conquer despair.

poem: your cars

Your cars pass by
like waves of sound
breaking on ancient glass,
as i lie here in a puddle of regret,poem
my heels held by the delusion
i should be doing something else.

My imagination toys with me:
you might have been customers,
or vital contacts,
or people who would have
made me smile
on a terrible day
and fed my dog cookies.

Only i am too weak to move.
My lungs fill with lava
every single inhale.
Pain sears through my limbs.
Worst of all,
a veil of hopelessness
has enshrouded my vision.

All i have,
as you fly past
the only home
i have ever known,
are these words.
They can lead me
to the ecstasy of my dreams;
they give me some reality –
a meager purpose
on days like this,
true,
but enough to force the air
in and out again.

They are my only anchor,
tethering my spirit
to this world.

How it wants to go free –
soar through the clouds,
away from the agonizing,
lonely
struggle
to find a realm
where my prayers are answered
in ways that makes sense.

The temptation of escape
feels nearly irresistible.

Yesterday, i was defiant.

The day before that,
i fell apart utterly.

Today, i wish
i had something within me,
some inner strength
that could fill me,
let me rise from bed
fearless and powerful,
removing all obstacles
like a fair-haired Ganesh.

Instead, i listen to traffic,
making myself drink
this cocktail
of solitude, pain and failure
until i stop gagging
and acquire a taste
for this moment.

-asha fenn
1 August 2014