Gold and Mercury

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Gold

I recently came upon this passage as I was re-reading Alice Miller’s Prisoners of Childhood for a larger project.

And the words tore through me:

In Alphonse Daudet’s Lettres de mon moulin I have found a story that may sound rather bizarre, but nevertheless has much in common with what I have presented here. I shall summarize the story briefly.


Once upon a time there was a child who had a golden brain. His parents only discovered this by chance when he injured his head and gold instead of blood flowed out. They then began to look after him carefully and would not let him play with other children for fear of being robbed. When the boy was grown up and wanted to go out into the world, his mother said:
“We have done so much for you, we ought to be able to share your wealth” Then her son took a large piece of gold out of his brain and gave it to his mother. He lived in great style with a friend, who, however, robbed him one night and ran away. After that the man resolved to guard his secret and go out to work, because his reserves were visibly dwindling. One day he fell in love with a beautiful girl who loved him too, but no more than the beautiful clothes he gave her so lavishly. He married her and was very happy, but after two years she died and he spent the rest of his wealth on her funeral, which had to be splendid. Once, as he was creeping though the streets, weak, poor, and unhappy, he saw a beautiful little pair of boots that would just have done for his wife. He forgot that she was dead – perhaps because his emptied brain no longer worked – and entered the shop to buy the boots. But in that very moment he fell, and the shopkeeper saw a dead man lying on the ground.
Daudet, who was to die from an illness of the spinal cord, wrote below the end of this story:
This story sounds as though it were invented, but it is true from beginning to end. There are people who have to pay for the smallest things in life with their very substance and their spinal cord. That is a constantly suffering recurring pain, and then when they are tired of suffering…
~  Alice Miller,  Prisoners of Childhood

Many are familiar with later editions of Miller’s book: The Drama of the Gifted Child. But its first edition was drawn from her observations serving as a training analyst in a psychoanalytic institute.

So let’s be clear: When Alice Miller wrote this, she was writing about the dilemma of being a psychoanalyst.

Psychotherapists are the prisoners she is referring to.  They are the ones who live in constant danger of giving out of their core,  excavating treasure out of their very central nervous systems, tearing fistfuls out of their spinal cords to care for others.

It is often said that psychoanalysts suffer from a narcissistic disturbance… This can be confirmed not only inductively based on experience, but also deductively from the type of talent that is needed by an analyst. His sensibility, his empathy, his intense and differentiated emotional responsiveness, and his unusually powerful “antennae” seem to predestine him as a child to be used – if not misused – by people with intense narcissistic needs. ~   Alice Miller, Prisoners Of Childhood

I’ve read this all before. Many times over the past twenty years.  I’d read it feeling smug and well-analyzed, so very processed,  I had mourned,  and finished with such archaic relational patterns – so relieved that I was conscious and had avoided such unconsciously created calamity.

Daudet’s original fable offered other warnings, which I’m sure I  would have been just as dismissive of, if I had read it before cancer.

Before I knew had a rare and chronic cancer in my spinal cord and central nervous system, floating throughout my cerebrospinal fluid, swirling around my brain. Before lesions on my lower spine deadened my nerves and distorted my sensory perceptions.

Before I fell.

The full story of The Man with the Golden Brain tells how the man left his mother’s home and squandered his treasure. Spending lavishly on everyone around him.

“You would have thought his brain inexhaustible. And yet it did become exhausted..”
~ Alphonse Daudet, Letters from My Windmill

It tells of his horror upon realizing the enormous hole he had slowly torn out of his core. It tells of an attempt to reform and rehabilitate himself, to create a new and corrective scenario where he would set and hold self-preserving parameters. And of the lure and seduction of his central problem, his compulsion to repeat, to re-enact his core-conflict, to give himself away to death.

Daudet did not have cancer. He had advanced syphilis of the central nervous system.

And I do not have a golden brain.

Nickel or silver or  copper at best. Maybe just some useful, work-a-day cooper wiring, the kind they steal from abandoned homes and sell on the underground construction market – supplies that would not buy me or others indulgent luxuries, but that could be sold for some modest profit.

And which I gave away as if my supplies were inexhaustible.

Until I learned that my supplies were exhausted.
Until I saw the gaping hole.
Until my ability to spend myself recklessly perished.
Until I fell on the ground at the crossroads.

A pile of stones marked the intersection.

There was no turning back.

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Mercury

Everywhere that Hermes appears, even when it as “guardian,” there is an influx and invasion from the underworld. This is not an invasions of death but rather, of “underworldly  life” ~  Karl Kerényi,  Hermes, Guide of Souls

As I sat (and continue to sit) in meditation through this cancer I found my mind sheltering in a new imaginal space: I lay on the ground, on my back, on the floor of a contained and insulated biosphere, surrounded by plants with broad leaves and the smell of rich loamy earth. The arched glass dome above me is silvered with mercury. The quicksilver allows only a healing opaque light into the sphere while it also obscures and protects me.  Its outer shell impermeable and reflective.

And for months I lay there in that spirit-bubble. Inert. Unable to move at first, and then over time, having no idea how or where to move.

I had fallen into a new world. A space between life and death.

Life inside my body was changed, confusing, unrecognizable to me in its depletion and limitation.

A life that has no prognosis. Not a bad prognosis.
Just none of any kind.

In real time I listen to others speak confidently of their long term plans, their retirements, their vacations, their children’s future college careers. They speak with a certainty that I have lost. A confidence, that I do not begrudge, but I know is illusory.

An illusion I do not get to participate in anymore. A confidence in the future that I will never have again.

This is difficult, impossible for most people to understand. Or maybe it is just intolerable to contemplate until you have to.

No one wants to imagine that I have been altered, permanently, pressed into living a new and unrecognizable life.  They imagined that I would be sick for a time, and die – or be sick for a time and then  “get well again” my gold, (or nickel or copper) brain restored.

Back on the ground in my domed solarium I knew that I could not  move, that I was not permitted to move until I was shown a way foreard. 

Until it was certain that I would not go back to the road I was on before, certain I could protect myself, preserve my very spine, my treasure, and leave the childhood prison behind.

He guides souls out of his realm – the world of paths and roads – back into the warm life of the household. ~  Karl Kerényi,  Hermes, Guide of Souls

And this is what I contemplated above all as I lay broken on the ground, basking in the warm light, guarded  from predators, sheltered by broad leaves, near the pile of stacked stones:

Whatever labor I undertake  must take nothing away from my children, my family.  Any energy expended must be returned to me in full, in kind. It must provide me with more time, resources, gold to invest in my home life. I cannot afford to become depleted for their sake. My family is my primary mission on this earth. They were my ground, the rich, yielding earth that held me as I lay on my back. The soil that infused me with life and with purpose. 

For months I couldn’t imagine how I could ever return the profession of psychotherapy again. I could not envision how to return to work, or make a living or pull my weight or feed my children. My old way of being, my grandiose belief that I was inexhaustible, my cocky confidence in the future, my faith in my capacity to be abiding, and consistent and to “go on being”  – all of that was gone.

Stolen.
Or perhaps I gave it away.

But I was not left in a void.

I was not banished to Hades.

I was deposited in this other-world,

And the mercury sky-light guarded and protected me,

and I listened to the implicit directions and I would not move until led.

I lay there a long time. 

(I am still there now)

Hermes reveals a new kind of thieving or larceny, a divine kind. ~  Karl Kerényi,  Hermes, Guide of Souls

A great deal was stolen from me, and subsequently from those who were attached to me.

My children lost a healthy mother, one who could take on big ambitious projects, who planned big adventures, who was physically strong, who could support them logistically, financially, and make them feel safe. I am now a source of worry, a fragile mother, who they must stay away from when they are sick. A mother with a chronic illness that will be terminal one day but who knows when, who gets bone tired even on a trip to the nearby mall and needs to sit down to rest. Who has a doctors appointment, or another test, or who forgot to take her medication.  Who needs them to get their chores done, who asks for help cooking dinner, whose limitations now impinge on their adolescence, constricting our finances, limiting our recreations and freedoms.

My husband lost a reliable partner, a fellow bread winner, and was left with a weepy, shaken wife with a damaged body numb from her waist to her feet. Who is courageous  for the kids and chatty with the neighbors- but who saves up her fears and frets and floods to share only with him.

Clients in authentic states of primal dependency, negotiating psychiatric crises lost their therapist entirely  – and were referred on when I was diagnosed to seek out other professional supports. I no longer have the fortitude to tend to them as their needs demand. I am too flooded with my own vulnerability to withstand, contain or carry anyone else’s profound dependencies.  I am no longer anyone’s life-ring. No one can cling to me hoping that I will save them. They must find other therapists who have the resources  and abundance to follow more self-sacrificing gods.

Other clients, with greater autonomy and stability, those who come to accrue wellness rather than to treat illness,  will need to choose whether they want to work with me as I am now:  My perspective changed, my needs more explicit: Higher fees. Fewer hours. They lost a comfortable, easily affordable, accommodating  and convenient psychotherapy. 

It may not be worth it for many.

Hermes is  a trickster, and the paradox became clear – that “going back to work” actually meant releasing it all, letting it all disappear if need be, leaving a vacuum that may or may not be filled.

Maybe we were all fooled. Maybe the violence of this theft was necessary for us all.

Hermes is the god who leads you on. ~  Karl Kerényi,  Hermes, Guide of Souls

And a stranger tweeted this to me:

J.D.‏@juanviejo:  Hermes as ψυχοπομπός, guide of souls, conducts the soul of the dead to whatever lies beyond the wreck of this life.

J.D.‏@juanviejo:  Hermes did not heal. Like him you are and have always been a guide of souls.

And these words were not only kind – they were relieving, enlivening. Only then did I realize I had been sheltered under Hermes/Mercury’s quicksilver sky, and that my work was simply to take up residence at the spot where I had fallen.

To live out the rest of my life at the cross roads.

I remembered how I helped my mother to cross, as she gasped autonomically, like a fish out of water, in her final hours of life. I don’t know how I knew what to do, but I knew:  I told her to lay on her back, on the dirt, in the grass at her childhood home and look up into the sky. I told her to watch a hawk, circling, higher, higher into the sky, until it was just a tiny speck, disappearing in the clouds and then returning, disappearing, higher and higher until it was impossible to tell if the speck was still there or there was nothing but sky.

And I told her: Grandma and Grandpa are here to meet you. And you know that Grandpa never ever comes late. And he never comes early. He only comes right on time, and he is here to meet you now. Go straight to them.

My mother took her last breath. And shut her eyes. And went.

Gentle Hermes led them down the dank dark passage ~ The Oddessy

I remembered all the words I have written and shared here and spoken and emailed to friends and family members and clients who have died or who have wrestled with death and lived.

And the bereavements I have guided others through as I negotiated my own grief. 

And I also thought about Mercury’s function as escort to the living through moments of fate filled challenge and decision.  He does not travel with his charges for long distances  or assume responsibility for them forever- but simply escorts them through from one state to another.

And then he is gone.

Hermes escorting men is your greatest joy, you above all gods.  ~ The Iliad

Hermes the messenger. The giant-killer who destroys all states of self-inflation and aggrandizement. The guide to the underworld. The escort at the crossroads.

And from my prone position I saw a path began to open near my right side, through the underbrush. An image of a feasible, sustainable, way to work in the world. The only way that was possible or ethical for me.
It is 0nly a nascent vision, a tentative plan, that may take a long long time to manifest:

  • Short term work:  five to ten sessions because I cannot carry the dependencies that I used to.  (and who knows what the future holds.
  •   Escorting the living through crossroads and decision points
  •   Guarding and guiding others who are facing down the underworld
  • Clinical guidance and supervision 

Hermes is a trickster, and the crossroads could begin to spin and send my fate flying in an entirely different direction.

There is no way back. 

Only the emerging possibility of a slow road forward.

Whomever does not shy away from the dangers of the most profound depths and the newest pathways, which Hermes is always prepared to open, may follow him.
 ~Karl Kerényi,  Hermes, Guide of Souls

This story sounds as though it were invented, but it is true from beginning to end. ~Alphonse Daudet, Letters from My Windmill

 

 

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The First Natural Enemy

 

 

Fear is the first natural enemy a man must overcome on his path to knowledge… A terrible enemy – treacherous, and difficult to overcome. It remains concealed at every turn of the way, prowling, waiting.

~ The Teachings of Don Juan: A Yaqui Way of Knowledge, Carols Castaneda, p. 62

I’ve been diagnosed with a cancer that must have been dormant in my system for a very long time. It emerged in manner that has never been seen before. I am the only one with this cancer in this way.

At the same time a cultural disease, the signs of which were long ignored, finally erupted, explicit on the national stage. Like nothing seen before in our history.

And the synchronicities between these realities are sometimes overwhelming:

The first symptoms of both of these diseases (and for me they are inseparably one) emerged in October. Some discomfort, some concern, but nothing that could or should be taken too seriously – all easily resolved, the problem could still just go away – and it would have been silly to be too worried. Maybe over nothing. No need to assume that the sky was falling.

Over the course of the month it became clear that signs  were accumulating, that some alternate reality was gaining momentum, that indications were pointing toward dangers more serious than imagined. But, still, nothing was definitive. Yet. Denial had its function. We didn’t know for sure. Nothing was confirmed. Yes, it was disturbing to even have to consider some of the potential outcomes, and to come so close to such a dire forecast – fear began to mount, but still: it could all be just fine, or maybe something that could be dealt with. There was nothing to be done until the final test was over.

And then, the second week in November – the results. The diagnosis confirmed. The disease named and explicit. The vision of future forever altered. The prognosis? Unknown. We could have eight months, or eight years left. Or a cure could come from out of the blue and save us all. It could be terminal. Or we could survive with it –  but there would be unavoidable losses, inescapable suffering. 

And survive or perish: we are all called to encounter our first natural enemy in one form or another.

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I first read Carlos Castaneda’s series about the teachings of Don Juan the summer before 7th grade. I’d spotted them on my defacto step-brother’s bookshelf, and had seen other college kids with them before. Even looking at the book jacket frightened me: images of large crows with knowing eyes, luminous eggs, and shining human forms, filled with light, devoid of faces. I’d heard the books were about “drugs” and I doubted my mother would let me read them if I asked.

We had all just moved in together after relocating to southern California from the midwest– my brothers, mother and myself with my soon to be step-father, who we all feared, and his son, Steven. We moved into a cheap two bedroom apartment in San Marcos while Mom looked for a job and a house for us to live in. The boys shared Steve’s room and Steve’s orders were not to touch anything of his.  Nothing, understand? Don’t. Touch. Anything.

I slept on the couch.

But my real “room” was the nearly empty coat closet. I’d arranged stacks of my favorite books, along the back wall. In one  corner  – I’d squirreled two couch pillows and fashioned them into a reading nook, with an industrial flashlight and a box of Ritz crackers. I’d read all of the Judy Blume, S.E. Hinton, and the Narnia books in my stacks at least twice, and so, when everyone else was watching 60 Minutes, I snuck into Steve’s room, and slid the Don Juan books off his shelves and deposited them in my make-shift sanctuary.

The books were about drugs, peyote, mushrooms – but they were also about magic and sorcery and seeing – as an anthropology student finds himself falling deeper and deeper into hallucinatory shamanistic practice. It was the strangest fairy tale I had ever read. There were long boring parts. Detailed passages about growing plants and preparing magic concoctions to smoke or eat. Peyote and mushrooms used as port-keys to other worlds instead of a wardrobe or a pair of silver slippers. I had no idea if what I was reading was fiction or non-fiction, dream or fact.

But I knew this: Carlos Castaneda, Don Juan’s apprentice  was afraid all the time. And Don Juan trained him to face his fears – by testing and terrorizing him. By frightening him over and over again. By telling him his life was in constant danger from spirits and dark sorcerers. By warning him that if he did not develop a warrior’s heart he would be destroyed.

“And what can he do to overcome fear?”

“The answer is very simple. He must not run away. He must defy his fear and in spite of it take the next step in learning and the next and the next. He must be fully afraid and yet not stop. That is the rule!”

~ The Teachings of Don Juan: A Yaqui Way of Knowledge, Carols Castaneda, p. 62

I was afraid all of the time. I needed those books. I wrestled with my fears every day and took on a dark sorcerer who seemed, in every way, to have power over our household, to have taken control over my mother and threatened to destroy everything I cherished.

I am afraid now. Cancer challenges every premise, every value, every belief that I have ever rested my sense of identity upon.

When visitors come to our home they ask how I am, but quickly the conversation shifts to our collective fears – the larger cancer that we are all contending with.

Fear is triggered by the sharp sound of a stick snapping in the silence. By shocking news that threatens your survival or your chances of happiness. By events that could consume those you love and cherish. By orders  that could harm your child, threaten your health care, deport your neighbor, cause you to question everything you believed about “inalienable” rights.

Fear reminds us that nothing is inalienable.

Fear grips physically, neurobiologically, spiritually – taking us down to the place where we contemplate losing everything, every one, our very lives. The most brutal primal experience of fear is a physical one, a visceral pain that burns like fire when we realize that our deepest attachments, to each other, to our children, to our neighbors, to our values, to our hopes for the future can all be severed by forces greater than we are.

And sometimes fear arrives like a disembodied spirit – in the middle of the night, stealing sleep, rattling dreams. We can be afraid and not know why we are afraid. Fear can fill up the empty hours like inhaling a gas in and out, until it fills every cell, contaminates every thought. Fear is a demon spirit that can possess and destroy us.

And you will learn in spite of yourself, that’s the rule.

~ The Teachings of Don Juan: A Yaqui Way of Knowledge, Carols Castaneda, p. 34

But the fear can also be the refiners fire – burning away anything that is unnecessary or excessive. Purifying, clarifying priorities. Boiling down to the essence:

What do we fight for? What do we live for? Who do we mean to be?

And if the fear is allowed to burn through – and this is a repetitive task because fear is never  extinguished as long as there is life, as long as there is attachment – we can find ourselves in a place beyond fear:

A place where the outcome is none of our business.

A moment that is lived so thoroughly, so impeccably that what happens next is irrelevant.

An instant that reveals everything that is more important, more essential than fear.

The split-second when our core purpose is located.

A space where we do what we must do – for love’s sake, for integrity’s sake, for the sake of our own fragile soul – because our heart has become, for the moment, a warrior’s heart. 

Oppressors and oppressed meet at the end, and the only thing that prevails is that life was altogether too short for both.

~ A Separate Reality, Carlos Casteneda, p. 143

 

 
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Distant Fire 

I’ve been re-reading a strange and haunting book by a non-dualist Christian theologian  Martin Bell, called Distant Fire published in 1986 – and came upon this extraordinary passage – and felt the need to record it and share it somewhere. 

So, here – not my words, but his – yet they are words that are clanging in my brain as if they were my own- seemingly written about the path I am negotiating and the global dilemma all of us are facing in this new and dark era. 

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“And being a teller of the story carries neither reward or recognition. More will be demanded than we had planned to give; we will shrink from death. But the faith community will not stop. The people will tell the story in spite of brutality and dogs and electronic surveillance, in spite of bombing and assassinations and every kind of oppression. We are part of a great cloud of witnesses who have faced the same evil…

At one time or another each of us believes it is possible to keep life contained. That somehow we can emerge unscarred. Surely we can navigate from this shore to the next without expending life’s blood upon the sand. But wholeness (holiness) does not consist in being perfect or untouched by the ravages of the world. And life is not fair. The guilty go free; the innocent suffer. And the ways of God are not fair: the door to salvation is open to all. Mystery abounds. Sooner or later each of us will be torn apart by the world. The only question is: In what cause, on whose behalf, will life’s blood be expended?”

~ Martin Bell, Distant Fire 

To the Bone

So maybe this blog has been veering off course – or maybe it’s been knocked violently off its trajectory. An online psychotherapist’s journal filled with random musings about psychotherapy and its processes -helpful and validating for clients and therapists alike–  its original mission now completely subverted by encounters with my own illness, disability,  and mortality.

This may not be the place to read about psychotherapy for a while.

I may not understand what psychotherapy is any more.

I know for sure and certain that I am not a healer. That I never healed anything or anyone, that every person who was ever healed of anything in my presence healed themselves.

People needed to pretend it was me, my love, my patience, my abidingness – but I know now, for sure and certain, that I never had any of the powers attributed to me. Maybe I was fooled sometimes. And there were many times when insistent and grateful clients actively labored to persuade me that I had a hand in making things better.

We want to believe that others, more powerful, more wise, more knowing and magical than we are can tell us the way, can take away the pain, can kiss our boo boos and make what is senseless make sense.

And I could sometimes fall into this illusion (and this illusion seemed to offer comfort in and of itself). I could seemingly take on other people’s pain, immerse myself in it – let it flood my nervous system – and sift through the grief and feel the vicarious injury, straining it through my flesh and tissues, filtering it through my veins and glands – and find some way through (not always of course sometimes I would become lost in the pain-scape for weeks, months, years). And then I would offer this partially and vicariously metabolized traumata back to the client, like a mother pre-digesting their offspring’s meal.

It was impossible before.  

It is still impossible. 

My supervisor once interrupted me as I fretted over a new case:

“Wait a minute…” she said “ Do you think it is your job to help people?”

Umm, kinda? No? No.

It is my job to create a space for them to learn that they have the power to save themselves.

But that answer was a learned response, memorized by rote, a consciously determined position that was in no way organic to me. It was what I said to myself when I was exhausted, or resentful, or simply failed to rescue someone from their own shit. “Its not my job, anyway. I can’t work harder at someone’s life than they do! I can’t save anyone!”

And  the “wounded healer” archetype, the desire to make our wounds of use, to transcend their damage and transform them into a strength, into prosperity, into a gift.

But now, I feel the costs and the impossibility of that task: a cancer in my spine so rare that I am the only known case in the world, that has left my nerves damaged, my right side numbed and deadend. A chronic condition and immunocompromise that I will live with for the rest of my days (fewer days than I would have had otherwise.) A slow and permanent cancer that will cost my family for as long as I do live – the expense of daily chemotherapy pills for life, an eventually uninsurable pre-existing condition, the accumulated annual medical bills that will keep escalating, hard financial realities that may cost us our home, that will change  the trajectories of my  husband’s and my children’s lives forever along with my own.

And the  compounded lesson – about what it means to encounter my true brokenness in this time, in this era, at this point in history. To face sickness and mortality as our nation writhes in the throes of its own disease process, the eruption of rot and pathology, dormant for years, that is now making itself known and may lead to the death of a democracy that we assumed would outlive us. The unavoidable message that my life, (and the lives of others like and unlike me, the poor, immigrants and queer folk, people of color, the disabled and Jews and Muslims) is disposable. That none of us  are valuable enough to have our civil rights protected, our medical conditions insured, our lives guarded or cherished or preserved. It is unfathomable  to fall ill, now – and with the fears of what the future may hold for me alone, for my family and for every one of us -a life threatening disease looming on the  micro and macro level –  as our national/cultural sickness  puts the entire world in a state of precarious alarm.

I am not a healer. I can’t keep anyone safe. I can’t alleviate anything. I am only wounded, mortal like all of humanity.

I have never healed anyone. 

And I am not be foolish enough to attempt to ever again.

It has also cost those I sought to “help” who must now suddenly learn that the only savior that ever existed was themselves. They must now untangle themselves from the illusion that they need me specifically, that I had or have some magic, some powers, some special juice.

None.  I’ve got no magic beans.

When I do eventually return to my office to sit in that chair – I will sit there in a wholly different way.

I will sit there broken, truthful with myself about the precariousness of life and knowing that nothing except death is ever certain. I will sit there knowing I cannot save anyone. I will sit there knowing that I don’t owe anyone anything, that I have nothing more or extra – that there is no “above and beyond.”

Those that came to me in search of healing, and transcendence-  because I erroneously believed  those were the processes I was courting –  will now have to go elsewhere.

I can only sit in that chair with my own fears, my own unignorable needs, my own humanity and I accept myself and my limitations and the vagaries of this life with radical compassion and a visceral clarity about what is essential and life-giving and what is not.

That is the mandate. 

I have been shown my parameters, and I accept them. I will live within that frame and I won’t  disrespect the visceral reality of my own limits ever again.

I accept impossibility. 

Is there some power there? Will my sitting grounded in that state be of any use to others? Does this hard knowledge have any therapeutic applications?

I don’t know. It’s not my business.

My job is only to live in relationship to my humanity.

Down to the bone.

No more transcendence. No more hubris.

Only acceptance – of myself, of others, and of all hard realities.





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Set Back 

Adjusting to the oral chemo I am supposed to be taking for life – the meds that one of the doctors  kept comparing to baby aspirin – was harder than I’d expected. After tipping four capsules from the bottle into a cup and gulping  them down – the bottle has a big sticker which says “cytotoxic” and a hazard symbol  which means “don’t touch it just swallow it” – I’d feel normal for a few hours except that water tasted unpleasantly metallic.

Dizziness crept in usually, which then transitioned into headache  that was almost constant – but I could deal with that.

But by afternoon the pain in my gut would start. Sour. Aching. Wrong. Painful. Not quite anything I’d recognize as nausea but it would ruin my mood and my appetite, sapping my energies and making it hard to lose myself in my children’s stories of their school days.

And then a  better day, followed by an almost good day. And then the pain comes back the day after. A better day. A pain day. Two pain days.

A random unpredictable pattern of discouragement.

And the same old nerve damage I’ve been living with for months persisting even when the doctors ask hopefully about improvements.
It made me wonder how and when I would find my new normal and if I could accept it if I found it.

I started to try to plan to plan to get back to work. Since on the other side of this recovery I am supposed to be left with a chronic manageable cancer -frequently compared to living with HIV by the care team- that will require I change my work values, my professional identity, my fees, my frame, my availability. Work for me has meant giving away all that I could and trusting I would get back enough to meet my needs.

And that scheme, obviously ain’t gonna fly in this new world, this new and altered life.

I was going to need some time and gather my strength and some distance from this trauma and neurochemical stability before I could even begin to sort that out.

I set up appointments for wellness care with my acupuncturist, my supervisor. I put a call into my therapist. I made an appointment with a nutritionist that specializes in chemo and cancer.

But then, I got really tired. New Years Eve day. Maybe it was bereavement- we’d lost a beloved family friend last year New Years Day. Whatever. I was exhausted and heartbroken simultaneously. I spent the day in bed.

New Year’s Eve I was nauseated and my head was pounding. I took my temperature and it was low 100.1, but high enough to be a little alarmed while on chemo, when you are immunocompromised.

But then New Years Day the sun rose and  I saw that I was covered from my neck to my fingers and toes with a splotchy rash. And I hollered to my husband that we needed to get to the ER. So I didn’t have time to check in with my kids about how they felt about their young auntie’s death anniversary or time to make Korean rice cake soup in honor of her or the New Year or even check if anyone could bring themselves to eat it – because maybe this achey rashy fatigue meant I was allergic to the “game changing” oral chemo which was supposedly going to give me back my life.

Or maybe it was something else.

The ER docs said it looked viral, but a doctor from my oncology team came by and said she thought it looked allergic and “we’d just have to find some other meds – oh wait, your cancer is too rare so you won’t actually qualify for those trials… ”

Trials I thought. For fucks sake: am I suddenly in the realm of being excluded from trials?

“Oh, we’ll figure something out,” she continued, “in the meantime see your primary oncologist on Tuesday,  stop the oral chemo for now and we’ll send you on home.”

With Tylenol and benedryl.

But I was still covered with an itchy rash and when I got home I ended up in bed with the shivers and a temp of 101.5.

But weirder: my hands and feet and knees and elbows and neck and shoulders but especially my hands became unbearably painful. My hands were actually excruciatingly swollen and so inflamed so I couldn’t  do anything – not open a pill bottle or a drawer or turn a doorknob and just looking at my phone or text messages made me want to throw up.

And the kids were scared and acting out by bickering and sassing by the time I was able to flinch and wince down the stairs one at a time.  And then I ask a kid for help getting an ice cube because I can’t open the freezer door and I’m met with a perfectly developmentally normal sarcastic sass-back and I yell and then begin crying and leave the room limping dramatically because it took all my energy to walk downstairs to sit with them through a dinner which I couldn’t  eat any way.

And I miss them. Terribly. But they are tweens and so I try to respect their need to keep their distance and self regulate but when they do circle round and I’m not well enough to really be present this is the saddest reality of all. Because it undermines the single prime directive I have to hang onto, the ultimate bargaining chip I go all in with when I lapse into trying to negotiate with my disease or the Universe or God: The chip called “Take Anything Away At All I Just Want to be a Mother to My Children.” because actually I want more than that. I want to be a fucking superlative angelic ideal goddamn mother who is able to put my children before everything, always. And when I see myself being a mother in a limited way, a limited mother who can’t protect them from tiptoeing around on eggshells or when I am simply reduced to an horrible entity called “Your Mother’s Illness”  I could stomp my foot and disappear into a giant hole of frustration and self-contempt like the one that swallowed up Rumplestilskin.

And I woke up at 4 am in pain from trying to roll over and canceled the healthy appointments I’d set up for Thursday because if I couldn’t  walk down the stairs to dinner I sure as hell won’t be  successfully commuting into the city.

And then i  hyperventilated and sobbed on my groggy husband’s shoulder until it was time for him to get the kids off to school by himself because he actually has to do everything around here and at the office.  And he let me sleep another hour before we had to leave for the follow up appointment.

And I shuffled into the head oncologist’s office and recounted my tale of sudden and extreme disability. I showed her my swollen hands and my fingers that wouldn’t  type or text or hold a phone. I reminded her that I’ve lost 14 lbs and my rings were loose before that and showed her that  they had become so tight on my inflamed hands that I could not  twist or remove them.

I showed her the rash which she wasn’t  all that impressed by.  She told us  she thinks the fever indicates that it’s probably a viral infection like 5th disease that I must have been exposed to somehow which isn’t a big deal unless you are immunocompromised. But joint pain and rash can be allergy too- so we’ll start you on steroids and see you back here Friday because we can’t go too long without my being on  oral chemo or  CLL antibodies, or at worst, more inpatient methotrexate but actually we would not stop the oral chemo long term for “something minor like this ” And even if it was allergic we’d have to manage it.

And a chill passed through me as I thought:

That ‘new normal’ I’ve been searching for. I suppose this could be it.

It could get better.

Or it could all keep unfolding

just like

this –

a random unpredictable pattern

of

disappointment.

What if new normal is here – and has been all along  –

And all we can do is manage it.



Update: 

The next day I ended up in the ER with swelling tongue. They are now assessing if I have genetic angioedema- a kind of intense allergic/autoimmune attack which can be triggered by the different cancer therapies, or even by the lymphoma itself, complicating my treatment plan. Cancer treatment is paused for now until we can move  forward in conjunction with an allergist/immunologist. 


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Good will and gratitude 

There are so many people all over the world to thank for this day, this morning, this holiday.

So many people who have offered spiritual, logistical, emotional, and financial support through this medical tornado.

So many people that I have known and loved through my lifetime, who I have only just met, and so many – an astounding number- of people I’ve never ever met who have offered us shelter and sanctuary.

And all the notes and letters – hundreds- who have kindly let me know what my writing has meant for them, how it has supported or impacted them, how it became a part of their own therapeutic process, how it carried them through times when they couldn’t find help.  I….  had no idea.

I really had no idea that this strange space, this address on the ethernet meant so much to so many people. This information alone is a mind blowing, life changing gift.

But along with those notes I have received piles of charms, wrapped presents to put under our tree, and truly extraordinary financial support – that made sure that all our troubles seemed miles away.

That gave us this day.

I tried, for a nearly intolerable moment, to imagine what this day would have been like without it all. If  some Dickensian plot twist flipped us into a multiverse where there was no net of kindness to catch us as we fell.

It was terrible to contemplate but I saw: each dinner tenderly cooked, each offer to babysit, each kind word, each prayer, each generous financial  donation, each locket, each hospital visit, each wrapped present, every single cord of love woven together by friends and strangers that saved us and allowed us to feel safe enough to freely celebrate this day.

And to rejoice without fear.

“And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.” ~ Luke 2:10

Good tidings.

Great joy.

Fear not.

And the deepest gratitude imaginable to you all for giving us this day.

The Returning Light 

I met with my medical team and got a lot of information today – much of it very relieving, some of it new, some of it complicated:
Here goes:

The lesions on my spine have shrunk sufficiently from the inpatient chemotherapy that I won’t be scheduled for anymore rounds of methotrexate at this time.

WHEW.

I will also continue with the outpatient antibody infusions – the schedule for that is to be determined.

I will be starting to take an oral chemotherapy medication, Imburvica, which my insurance finally approved, which I will need to take daily for the rest of my life.

(This is different from “3 years and done” which we had thought was the plan)

Basically, until research discovers some other solution – and there is an extraordinary amount of encouraging research in this area- the “mother cells” of this cancer will always be present in my system – and I’ll also be immunocompromised  both from the presence of the cancer and from the Imbruvica.

I’ll be monitored closely, with frequent scans which will gradually reduce over time to make sure that Imbruvica is working, and also watched closely for side effects such as excessive bleeding, infection, high blood pressure, etc.

As for the symptoms of nerve damage that remain – it will take time to assess if the nerves have been damaged and can heal or if they are dead – the doctor said it can take up to a year for that to be determined.

So: the worst and most terrifying outcomes seem to be off the table and it doesn’t look like this cancer will kill me or disable me in the short term.

I am much younger than most of the people who are on this oral medication – which means they expect that I’ll have fewer side effects to begin with – but I’ll also be taking this medication for a longer span of time than most of the others with CNS CLL so I’ll be watched closely.

I’ll take the next few weeks to recover, and get my strength back as well as to adjust to the oral chemo – which can cause some discomfort and dizziness to start with.

And then sometime after the New Year I’ll slowly start phasing back into my practice – although because I’ll be contending with new health concerns I will likely need to both adjust and reduce my workload.

The kids are incredibly relieved, as are we all – although there is new information to adapt to- we are releasing our fears of “getting worse” and embracing what it means to live life in a new way.

Just as we pass the darkest day and the light slowly begins to return.

So:
GOOD,
MERRY,
HAPPY,
JOYOUS,
PEACEFUL
HOLIDAYS
To you and to all of us.
🌠🌠🌠🌠🌠🌠🌠🌠🌠🌠

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