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.
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
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.
“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
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.
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
a random unpredictable pattern
What if new normal is here – and has been all along –
And all we can do is manage it.
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.
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
And the deepest gratitude imaginable to you all for giving us this day.
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:
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.
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.
To you and to all of us.
In less than 24 hours the unfathomably generous giving in response to my placing a “donate” button on the blog and on the previous post has taken care of the deficit in my gross income for the months of October and November while I was falling ill.
I am astounded and flooded and grateful and trying my best to accept this as something that will help me to rest and recover – To see it and metabolize it simply as as love. Love in action, love that creates and embeds us all in larger communities.
Love that is as natural and understandable to me as the love that I feel for my family and friends, for my clients, my various communities, for our universal interconnectedness and for our shared humanity. I understand feeling love better than I understand receiving it – so this is where I must begin…
It will take me time to take this all in.
How symbolic that this is my 100th post at What a Shrink Thinks. How astounding that this self-indulgent psychotherapist’s journal has changed my life in so many ways. How incomprehensible that it is now carrying me and my family through times of trouble. How perfect that my 100th post should offer me a chance to express how much it means to me that you have read, and shared, and emailed and supported and valued the strange and personal musings that I set down here. How right it is to be able to thank you all, for all of it, for the whole ride right now at this moment.
When others step in to help a mother keep her children secure in times of trouble it creates the most powerful form of gratitude.
I really have no words. Thank you is insufficient.
May you be blessed for your kindness.
May you be as blessed as I have been.
So, as a psychotherapist in private practice you are self-employed. That means you pay your own office rent, liability insurance, malpractice insurance. You pay for your own sick days, and vacation days. You fund your own retirement plan. You have no flex-spending account. It means that you, for decades, self-purchase a private medical insurance plan, out of pocket as well a short term disability plan (which reimburses you for less than 10% of your earned income but better than nothing) and a more expensive long term disability plan, and a long term care insurance plan (which you hope you will never have to use.) If you are fortunate, your income is enough to own a home and subsidize your kids’ needs. You feel better off than most people, and the precariousness and variability of the work is outweighed by its meaning and sacredness.
You can’t really imagine not being able to work. It is a profession you don’t plan to retire from, even if you can imagine seeing fewer clients and writing more and maybe going to seminary for no good reason at all. You can imagine your work life adjusting and changing, but you can’t really imagine it being disrupted.
You know, you see those articles about 102 year old therapists and you think: “Yep, I’ll just keep hobbling into the office because our culture needs wise old crones.” I mean you save for retirement because you know you won’t be able to earn your full income but you don’t really plan on retiring.
You probably won’t be able to afford to retire any way because you don’t earn all that much. And kids are expensive. And college is coming up – and of course you’ve tried to save for that too – but none of it can be enough, it will be tight, and you’ll sell the house and downsize again and live simply and you’ll get through.
And you’ll keep working.
I mean you’ve worked through and around migraine, and flu, and fever, months of sleeplessness as a new mother, and the death of loved ones and sick kids, and family emergencies – and all of your extended family is dead now – and you’ve made it through some really bad shit and been able to compartmentalize and still show up as a therapist even when your own world was on fire or collapsing, you have been able to cancel and reschedule at worst and still be there, and still listen – sometimes to crises far more minor than the ones you are negotiating and sometimes to crises far greater – and yes, it can be really really hard, sometimes an unfathomable strain, sometimes it takes the energy of every mitochondria of every cell in your body to sit there in that chair and stay alert and stay present and stay connected.
And at the end of the day you may be wrung out, a near zombie, but you did it, and offered value, and maybe even coughed up moments of crystalline insight, and no matter how fucked up you felt in your own skin, or even when you’ve needed to take medication for migraine and were a little altered neurologically, there were moments when you know you nailed it, and transformative moments, and moments of closeness and intimacy, and moments of acknowledged failure and you may be fucking tired but at the end of the night you get to ride home with truth in your pocket.
And people pay you for this. And some people can’t pay you for this. And some people could pay you for this and can no longer and you aren’t going to abandon them and some people couldn’t pay you at all for a long time and then they could. And some people always can pay you for this and do. And some people come and go and you hold your door open for them, and maybe they can’t pay your full fee but you’ve known them for so long and you trust your caseload- in its distribution along the entire socioeconomic scale – that they pay you what they can and you receive it and are grateful. And there are times when you wish you were one of those independently wealthy therapists or were married to someone who was an investment banker so you could just pursue this as a jobette, and set out a collection bowl on the coffee-table and have people leave whatever they thought the hour was worth to them and not have to think about this stuff at all.
But you are married to someone who does the same work you do, and has similar values, thank god, and who understands and supports you and sometimes peer-supervises you and calls you on your shit better than anyone else. And between the two of you, you accept the variability, and precariousness of your income stream – as full fee clients fall into crisis that make them suddenly no fee clients, or as you pass through an under-booked season, or an over-booked season the other one is there to stabilize your fluctuations and you do the same for them.
And its been this way for decades. Getting by. Pursuing meaning. Earning a living. Scraping along. Getting through. Downsizing. Negotiating financial crisis and hard times. Seasons of prosperity. Seasons of scarcity.
Not so different from what you learned on your grandparents’ farm, the only and most noble work model available to you: Dependent on fate and fortune and weather and politics and the good will of the community and your own resourcefulness and generosity through bountiful harvests and years of drought.
And then you find out on a Monday that you have cancer and you cancel your work week and they start giving you huge doses of steroids which change your thinking and you are processing the fact that they see this as an emergency and you are admitted to the hospital on Thanksgiving Day for your first cycle of chemotherapy and that makes you nauseated and the medications you take to control that make you feel even more altered and the chemo itself seems to effect your thoughts – make them move more slowly and strangely. You notice a difficulty retaining certain kinds of logistical information – and don’t know if that is because you are still in psychological shock that you are very ill, if the cancer itself is effecting your energy and perceptions or if the meds you have to take to control the nausea from the chemo change your thinking or if this is an effect of the chemo itself.
And you are home by Monday and you know there is no way you are going to be able to work – even though the doctor said you could – because you are not present, the first two days home you are actually a fetus, and are not able to be present even for loved ones that you miss terribly and most want to be connected to. You can’t think clearly. Your thinking and feeling functions are altered and impacted and untrustworthy. When you feel optimistic you don’t know if you are in denial or responding to the data that the doctors have laid out in front of you. When you are afraid you don’t know if you are being hysterical and catastrophizing and succumbing to irrational fears. And you suspect that much if this is neurological response to all the toxicity that has just run through you. And you suddenly can’t trust that you have anything to give anyone and you can’t tell how contaminated your thinking is and you don’t know how much energy you have to “go over” into anyone else’s world and you wonder if you can work at all through these chemo cycles – if it is even ethical to do so, and you realize once you ask yourself that question: “Is it ethical for me to work in this state?” that the answer is obviously “No.”
So unless things shift, or maybe in the second week after chemo your thoughts will clear up as the nausea and the meds that go with it recede – and you might be able to get a day’s work in. (right before you have to go back into the hospital for another chemo cycle) you may not be able to work through this at all.
And maybe it will only be two cycles. But the nurse practitioner said to prepare for four.
And the people who love you, your primary family and friends don’t want you to work at all and want you to tolerate being cared for, for god’s sake, you have a crazy rare cancer – you are the only one in the world known to have this cancer in this way – and you need to rest and focus on getting better and getting through this.
And you gather your colleagues and you ask them if they can see your clients and you encourage them to seek ancillary support from from other therapists because you don’t know what you will be able to offer or not but it probably won’t be much for a while.
But the “low balance” banking alert on your phone keeps pinging and you see the strain in your husbands face and he would like to protect you from this reality too but he really can’t because what he has to do is work extra, and take on more clients – to try to expand his income as much as possible even though he cannot possibly double or triple himself but knowing him he will try.
And worse, cancer has not just erased a full one half of your household income you now embody a new list of expenses as copays and especially pharmacy charges explode and you haven’t even seen your share of the first hospital bill yet and there are 3 or 4 more to come. And your previous “privately purchased” insurance was folded into the exchanges and downgraded and then downgraded again a few months later to an HMO, and now they are even holding up on approving a game-changing life saving medication which is known to eradicate your type of cancer (even though you are still the only one who has ever gotten it in this order, in this part of the body) and the doctors want you to take like triple the standard dose and you can’t even imagine what they are going to make you pay out of pocket for that since just your migraine pills cost you, personally $40 per pill.
And you still have childcare, and office rent to pay if you are to return to work, and all your insurances -and your medical insurance – which in this new Trumpified world has to be maintained at all costs because you now have a life threatening pre-existing fucking condition.
And your daughter who has always been fashion fixated is excited about a new dress for her first middle school “semi-formal” and your son, who has been a largely unmotivated student began suddenly working his ass off in Spanish class last year animated by a chance to earn through grades and hard work, a spot on the school trip to Spain and he did it and he even improved his grades across the board – and you want to make sure more than anything that he can still go and if your cancer fucked this up you will hate yourself forever.
And you know that your household expenses were just barely covered before.
And that you are heading into deep shit now.
And you want to work when you can because it will be good for you and good for others and you look for opportunities to do that.
But mostly, people keep telling you not to worry about all this and just get better but you aren’t just sick, you are in harms way, and you are putting your family in harms way. And you can’t ignore that.
And you realize that you have given a lot of yourself away for free, in lots of spheres, charitable work, community organizational work, pro bono work, and that you give your writing away for free too, because you don’t really think of yourself as a writer and people keep telling you that you are but you don’t really know what that means.
If you are a psychotherapist in private practice, this is a potential reality too. This precariousness. This fiscal danger.
Impossible things can happen. And they can change everything.
This is the nitty gritty that catches in the drain pan under the shadow of your profession:
It can stop taking care of you in an instant.
I realize I have to reexamine and reorganize my inherent sense of expansiveness. I am being taught new experiential lessons about limitation.
But now I can’t give away anything, even words, because it will cost the people I love, and myself too much. Perhaps now have to consider all the ways in which I give too much away, undervaluing myself.
So: I’m adding a donate button to this blog.
I since writing this I have completed my inpatient chemo therapy and here is information about my current status. I hope to be back to a modified work schedule in late January or early February.
And, in the meantime, I’ll research and get real about professionalizing myself as a writer and pursue getting paid for writing in formal, more explicit ways.
If reading my writing has been of value to you – please consider making a donation which reflects that value. Perhaps what you might have been willing to pay for these essays had they been for sale in book form.
If you can’t and don’t click on the button – all these words are still here for you and if you can please just find a way to make it of use in your own life and make a commitment to pass that value on to someone else that will mean the world to me.
And if you do click on the button:
More than words can say.
This isn’t going to be all pretty and processed. This isn’t going to be all edited and shiny and polished. It’s going to have TMI, and it’s going to talk about shit, and piss, and genitals and fear and death. And psychotherapy.
And you really don’t have to read this.
It is long, and it is dark.
I just need to write it and release it.
And maybe there are other psychotherapists who may find themselves in a similar position, or who are in this position now. And clients who have been in this position with their therapists who didn’t get a chance to speak about it or to ask questions.
This is where I am setting down my load. It’s a kind of unbelievable set of ludicrous circumstances – and I’m warning you it’s going to evoke some existential anxiety. It’s going to remind you that life is not a safe proposition
So the first thing that happened is that my vagina blew up. Because I’m actually going to refuse to be ashamed about any of this I am naming exactly how this started. My uro-gentital area became inflamed and extremely, unfathomably painful. In a way that makes no sense. I’m an old married lady. Nothing “unusual” had taken place down there in long time.
The gynecologist was stumped. No infection of any kind, viral bacterial or fungal. Nothing she tried or prescribed helped. The pain got worse and worse. And then one Friday night,– I stopped being able to pee. And the pain. So I went to the ER the next day because that was something I had never experienced before in my life – my capacity to eliminate paralyzed – where they told me that I didn’t have a UTI and discharged me with antibiotics because when they tried to discharge me and do nothing at all, I started to cry. I didn’t want antibiotics – but they had to placate me somehow.
And of course my gynecologist was away on jury duty, but I at least reached a nurse who told me that I could soak in warm water, or pour warm water on myself, or maybe just immerse my hand in warm water, and told me what other women who had “vulvodynia” did – women with unexplained, untreatable severe chronic vulva pain, about 15% of all women – and some of the tips she offered helped a little.
So I dangled in vulvodynia-land for about two weeks. In constant, excruciating nerve pain. Like shingles sort of. Nothing relieved it, but some things made it worse and I could at least avoid them while I researched out some solutions and got to an acupuncturist.
But then something stranger happened. Over the course of a day or two the pain and paralysis began moving, spreading on to other areas, my anus, my lower back, and retreating from its initial territory – but whatever the pain left behind was numbed, weakened. And then it began spreading down my right leg, and to my foot. Just before my vagina blew up I had been to the podiatrist for excruciating foot pain. I thought I might need new orthotics.
But now my foot, leg, lower back, and what doctors call my “saddle” – all parts that would make contact with a saddle if I were riding a horse – were numbed, weak. My bladder and bowels were not operating easily or properly. Going to the bathroom became an intentional, complicated and conscious task. Walking was similarly complicated: I couldn’t feel the ground much – it was as if my foot was deeply asleep and hadn’t started to wake up yet. Rubbery. I watched the ground and moved my foot with intention on the way to catch the train for work: Pick it up. Put it down. Pick it up. Put it down.
Getting to the office was a challenge and a relief. I could sit in my shrink chair and not have to think too much about my body, only about other peoples’ lives what was happening to those I loved and cared for.
I got to my primary care doctor. Lyme’s disease? Something structural? My father had many back operations, stenosis, arthritis? Something compressing, herniating in my spine? Back surgery?
He ran some blood and sent me to my neurologist, who I see for migraines.
The neurologist is a nice young man. Handsome. Silly. Sweet. His mother is a social worker/psychotherapist and I can imagine my son growing into a man like him. Available. A little anxious. But kind and full of empathy.
He wasn’t too concerned about my numbness. I couldn’t curl my toes on my right foot but I could feel the safety pin as it tapped my along the thick skin at the bottom of my foot.
But he did send me for an MRI and I cancelled my clients for the day.
And after the first MRI he called back much earlier than I expected. That didn’t seem a good sign. I was on the train to work. I was standing. It was crowded. My back pack was heavy from the big thermos – the office had no warm water and I had to bring my own. There were small white spots in my lumbar region on my spinal cord, he said. We didn’t know enough about them to make any diagnostic determinations – or if it was local. It could be demylenation (Multiple Sclerosis) granularization, (Sarcoidois) or “something else.”
He didn’t say what “something else” was – but I knew.
I dismissed the “something else” as practically impossible – because I’d had such good blood work with my Gyn and my GP. Perfect. Excellent white blood cell count. No sign of “something else.” He was re-running the blood work, and I was pretty sure that he hadn’t seen my first tests. That was probably why.
We needed another MRI. We were going to need many more tests most likely. This was now moving fast, and starting to get disruptive.
I sent a Bcc email to all the clients on my caseload: I described the symptoms I had been experiencing – pain followed by numbness “below my waist and through my leg and foot” I told them that a long diagnostic process involving many more tests was going to become disruptive to my schedule – and that I would have to send out group blasts in order to keep people up to date on the days I would be in and out of the office.
I also tried to sound grown up and reassuring and realistic:
The neurologist has encouraged me not to worry about end outcomes when we are at the early/middle of what is likely to be a long diagnostic process. It could be many things and many of them manageable. I think this is excellent advice and I am trying to adhere to it.
I’m sorry this is so disruptive. Please expect to meet for our regularly scheduled appointments unless you hear otherwise from me.
It is likely that I will be reducing my schedule by compressing it somewhat in the next few weeks, but that should only involve rearranging a few appointment times.
I won’t be taking on any new clients for the time being.
I will send out group updates as I have new information – and hope you will feel free to share with me any concerns this activates.
I am comfortable and in good spirits – glad that whatever this turns out to be we seem to have caught it very early.
Somewhere around here Trump was elected.
My work sessions were now filled with fear. Fear about the world, fear for their lives, the ongoing legality of their marriages, fear for friends and chosen family who are Muslim, who are immigrants – documented and undocumented. Fear in response to hate crimes. Fear about whether I could remain a consistent support in their lives.
Fear for me.
Fear about me.
Fear of me.
I reached for the words that people were scared to speak. Words like death, and die, and disability and abandonment. I tried to make room for everyone’s experience about what was happening to me, to us, to our work.
I chose to be transparent, and answer questions honestly and factually. We talked almost in the exact same way about our fears about the state of the world and what the future held for everyone.
There are many therapists that would say this was all wrong. That this is “self-revealing” and poor boundaries, proof that I am insufficiently analyzed.
I decided that this was Life.
And that illness and dark times are a natural part of life – and I decided that like it or not – this meant that I had to teach the people who came to see me something about how to face illness and darkness and accept it as natural and expectable. To demonstrate that one can remain psychologically and emotionally intact – empathic – even in the face of illness.
I set one limit, with all clients who were in treatment and legitimately contending with rage and anger issues: Angers that I might be able to accept and withstand under normal circumstances, that I could usually be caring and curious about, that might activate my own fight or flight responses that I had learned to sit and wait and sort through to discover the empathic thread – I was now too challenged personally to withstand. That while I had my force field intact I could encounter and work with rage head on. But now that so much energy was being redirected into managing my own fear, and a real threat to my health and functioning, and maybe my survival – that I had no room left for extra adrenaline.
I did something that I never wanted ever have to do: I bound my clients. I made some subjects off-limits.
Rage directed at the universe I would could stay and listen to.
But I could no longer be the space where ancient angers emerged and were survived and withstood and healed. I could no longer dance the corrective ritual steps of healing primal rage inducing injury.
I used to be a reliable container. I was now, suddenly, a cracked one, limited in what I could hold.
This felt like its own kind of loss.
And what was happening in the world around me, in our political environment felt like what was happening inside me.
Time for priorities to be reorganized and expectations to be surrendered. For core values to summoned and to rest upon them and try not to be budged from that spot: To be brave. To be good. To protect others and ourselves. To allow fear and sorrow to rise up and fall away like waves. To stay focused on what is most meaningful and essential about life and living and nothing else.
After the second MRI of my neck and brain, the neurologist called instantly, which indicated to me that he was not only caring but alarmed. I was still wonky on the Valium had taken so as not to have a panic attack while my head was locked in a vice and stuck inside a big loud can. These same spots, the lesions were present in my cervical spine – which meant through out my entire spinal cord. And I imagine in my brain too – although he didn’t say. I could already tell it was hard for him to consider and deliver bad news. I pressured him to tell me the range of possibilities:
“You’ve asked a scary question and so you deserve the scary answer,” he said:
“Demylenation, granularzation, and cancer – all of them are about equal possibilities. There is no hierarchy of probability among them.”
I would need a spinal tap.
I reviewed my dreams over the past three months starting well before symptoms emerged:
I am storing up gold bars and large bills. I am preparing to be killed. The money and gold are to take care of David and the kids after I am gone. I am running against Donald Trump and I am not afraid of him in the slightest. I see him for what he is and can name it out loud. He leaves me taunting phone messages which seem stupid and childish to me. I plan to annihilate him with the truth. I am not scared because I will not be around for long.
A man visits and talks about his skin cancers. He points out one on my forehead and over my left eye –and then tells me that it’s okay to be upset, the upset is the path.
I dream I am naked in the shower and my son called me because someone is knocking at the door. I grab a robe and see through a small window in the door a short woman with dark hair. I open the door and she has a gun aimed straight at me.
I dream my house is on fire but the fireman tells me that it is only the curtains in every room which have been destroyed but they were dust collectors anyway.
I have cancer in this dream: I am going to die but I do what I like. I spend time with my kids. This is all I really want.
I am teaching an old client, that I have just been reunited with on an airplane or a subway. I teach her how to surrender. That surrendering is saying yes to something you do not want. But saying YES anyway.
Dream that I have a plot of earth and have been given Ellie’s deceased body, wrapped in straw, from head to toe like a shroud. I decide to make it into something beautiful – I plant flowers and dig a sculpture into and out of the earth. I lay Ellie’s body along the top edge of the plot and bury her. Packing in the cool, sandy earth all around her. And I make sure that the packed earth retains her shape. And plant purple flowers with feathery leaves where her hair would be. I finish and it is beautiful. A garden with a visiting spot and space for her that is her and of her and earth and straw and filled with seeds which will bloom in the spring into beautiful flowers. And I’m proud of it but I say: I am never going to do that again. That was the hardest thing I’ve ever done.
I dream that my office and everything is destroyed in an earthquake. Reduced to rubble. Not just my office but also all our support services. A friend comes and we venture out past the epicenter of the earthquake, beyond my old neighborhood, and I begin to find resources to start a new life.
The night before the spinal tap:
A dream that my fingers twitch uncontrollably and I know it is a sign of a serious disease in my central nervous system.
I write my psychotherapist who I have known now for thirty years because I can’t get into the city easily and because I am scared. And he writes back that he is in complete denial and will break something, truly, if it turns out that I am ill.
And I don’t know why but this makes me laugh and laugh until tears stream down my face and also feel loved. And I know once he has metabolized this that he will be there for me. And I just hope he doesn’t break anything too expensive.
The night before my husband and I go to the doctor’s office to hear the result of the spinal tap:
I dream that I have brain cancer.
And I distill the results that we receive from the neurologist into a few emails: One for friends and family, one for colleagues, and this one for clients:
This past Tuesday I had a spinal tap which revealed a strong likelihood of a rare form of chronic, low grade leukemia – called CLL – which is presenting in an unusual manner – along my nervous system rather than my blood.
This is a rare and confusing occurrence- in its normal form: CLL is a “watch and wait” cancer – something like prostate cancer can be – and is usually treated/kept at bay with long term steroids –
But since this is a leukemia that has not presented in my blood work at all – (my blood work is perfect- which is obviously unusual for blood cancer) – its a bit like prostate cancer showing up in the brain and no where else – its jumped its track – and isn’t in its own lane –
Most people with regular CLL present in their blood live with it as a chronic condition.
Because I have a strange form they don’t really know much about its course or what to expect. It’s not showing up in “normal” ways so a clear prognosis is impossible.
We are proceeding to an oncologist who specializes in rare versions of CLL and who will be more able to confirm this peculiar diagnosis – and who is “excited” to see me.
I am unfortunately: an “interesting case” and no one can say yet much for sure other than that there are many treatments for CLL in its normal forms – and several newer successful treatments chemotherapies coupled with newer personalized biological agents, for rare presentations like mine.
It seems, at this point, to be considered treatable – although probably not at all in the way that “normal” CLL is.
I am quite comfortable. I have no pain. My symptoms have been actually improving which is also confusing for the doctors – I am grocery shopping, walking the dog, exercising gently, folding laundry etc.
I will be in the office whenever my doctor’s appointments and energies permit
I want to say one important thing: You are not required to go through this with me. You also have needs: for security, for consistency that I may not be able to provide through this uncertain time. It may not make sense to you to be paying for psychotherapy that has in and of itself become a source of stress. Please know that if you feel you need a referral to another therapist – I will understand and support you and connect you to a clinician I trust and who will understand the effect this may be having on you.
Otherwise: I will be functioning as a therapist as I can, to the best of my ability through this – whenever I can – because this work is important to me, and because I believe in it, and it is healthy for me to invest in what I believe in.
(I include some information about scheduling oncology and testing appointments, scheduling and rescheduling)
I am okay. I have been through this with many loved ones and with many clients. I have had many amazing role models at how to face cancer. I’ve lived here vicariously and now I am here myself. I am not lost. I’m oriented. I have accompanied many people through this process and that gives me a great gift of knowing exactly where I am, it gives me solid ground to stand upon.
There are things I leave out: that the kind neurologist’s eyes welled up telling me. That he had made a plan for the oncologist to see me the same day in case I was deteriorating rapidly – which I suppose – means that I could. That although he focused a fair amount about how CLL is chronic and managed in its regular form, he said it is “not good” that it is in my central nervous system – and he said nothing at all, positive or negative about the images of my brain and whether or not these lesions were present there.
And also I contact my closer colleagues and clinical collaborators – to see who has openings, who can take low fee clients, who might be willing to take on helping me reassign my clients in case I need to engage quickly in treatments that are incapacitating, and to see who could offer support to clients who need more consistency at this time than I can provide, or who will need support because of their concern and reliance upon me. And they rally and tell me they will be glad to support my caseload, or get them to support and they all use the word “temporarily” pointedly
And sweet notes from clients: who send love and encouragement and any kind of care they can offer. And many clients reassure me that they want to stay and that they can and will or feel they must wait, and will meet with me whenever I am available. And I encourage many of them to at least find supplemental support in some form over the next several weeks until we understand what is coming next.
When you take up this profession: you must remain always cognizant of the position that you hold in your self created community. This is an ethical requirement. This is one of those values and priorities that get you through dark times: Do the right thing
When I face out into the world I feel prepared and intact.
When I face my children, who watched their every-day grandmother die in front of them, who watched Ellie, their beloved auntie die away – who lost half of their primary caretaking team over six ferocious months – I am brave for them – but inside I panic and tremble. The thought of compounding their losses is intolerable. I am now a source of terror and trauma. They don’t know anything about cancer except that two rare cancers have killed two of the most important people in their universe.
And now I have a rare one too. But it is treatable we tell them as the doctor said to us. But we heard that same word about Ellie’s lymphoma and my mother’s breast cancer too and placed all our hopes on that one word. We now know that the word treatable does not mean survivable. We cannot trust that word even if other’s need to. We’ve ridden the cancer rollercoaster. We have been on it continuously now for three years – first caring for my mother, then Ellie, and just a few months to breathe through our grief before we are back on the ride. And I am in the front car this time.
We told them calmly and frankly – as they are both too old and too perceptive to be lied to. And that is the most intense conversation I have ever had as a mother, so far. This is radical parenting: trying to decide what is the most loving thing to offer them, and the most empowering thing – when my first impulse is to run somewhere and hide from them entirely until it is all over and I come home one way or another. But I can’t abandon them or insulate them from trauma or even cumulative trauma. I can only model for them how to commit to love and courage in the face of fear.
And I cannot separate this diagnosis from our bereavement any better than my children can. Last November, on this date, Ellie was sitting here on my end of our couch, reading a graphic novel, with my daughter sitting on the other side, their feet tangled together just as our feet and slippers are entwined under the blanket we are sharing right now.
The leaves were turning and we all wore sweatshirts and we napped when Ellie napped and took short walks together to the dog run and rested on a bench before heading back – just as we have been doing together this weekend. And she was gone by New Years Day.
And the chair my husband is sitting in right now we purchased on the day my mother died in hospice last summer, when moments after her death I was possessed by an irrational need to go to IKEA.
It is significant psychological labor to identify with the dead, to miss them, to feel them close, to mourn them, to need them desperately, and now to be in the position they were in – without assuming that my fate will be the same as theirs.
More information about treatment and prognosis in the weeks ahead. But I’m sticking with these prescriptions for now:
Surrender means saying YES even to things you do not like.
And remembering that the upset is the path.
And not to hide behind the curtains but let them burn away.
And to be with my children.
And to annihilate fear and evil with the truth.
And to search for resources beyond the rubble.
And terrible losses can be transformed, with great labor, into beautiful flowering gardens.
An update for those concerned:
Some good news, some news of challenge, some weird news all tangled up together:
Currently I may be the only known case of CLL lymphoma only in the central nervous system and not at all in the blood/lymph. There are other rare cases of central nervous system occurrences but they have always happened to people who already had CLL previously for a long time their blood/lymph. Doctors and researchers are therefore VERY INTERESTED in me. Conferences are happening, and I will of course be presented at Grand Rounds (Fancy!)
Today they took a bone marrow sample to be sure that I didn’t already have CLL in some dormant form, and a spinal tap to make sure that they are able to match my mutation/variation of CLL with the most effective chemotherapy.
All of other cases of central nervous system (CNS) CLL remain “lazy” slow moving cancers that have been very very responsive to a variety of treatments.
My brain is clear of lesions. It appears to be contained in my spine and does not seem to have metastasized on initial examination to any palpable lymphnodes. PET scan tomorrow will confirm this.
It is possible that a recent glaucoma diagnosis I received was actually CLL in my neurooptical region – and they are going to have me examined to clarify that.
I am at one of the top 5 hospitals in the tri-state area. My doctor is a leading expert in CLL, and has treated rare forms before and published on this subject (and will be certainly writing up this case!)
They consider my case an emergency because of where my lesions are – through out my spinal chord – but their concerns are more about paralysis, (or blindness) rather than death.
Treatment is 4 pronged:
1) a chemotherapy such as methotrexate – ( if so it’s likely that I’ll even get to keep my hair.)
This will be a 3 day in-patient infusion process in 2-4 cycles depending on my response. Two weeks in between cycles. I’ll be going into the hospital this week Thurs – Sat.
2) An outpatient infused biological anti-body that targets CLL cells directly that starts on Wedneday –
3) Steroids to address the nerves inflamed by the lesions.
4) A long term oral chemo medication that I will take indefinitely – to keep the CLL suppressed.
So the next few months will be bumpy and erratic and hard – but this seems to be a cancer that can kill me eventually but is unlikely to kill me soon.
They believe we have caught it early enough that I will eventually regain most if not all of my lost function in my damaged and paralyzed nerves.
Hopefully my peculiar case responds as well as the other CNS CLL cases they have seen.
I am mostly very relieved that things are moving quickly, that my brain is clear of disease, and that this is unlikely to be imminently lethal.
(And I am certain to have a few journal articles written about my case – which I kind of want to demand that that name after our Crawford-Amarel family: maybe in honor of Ellie’s nickname for us doctors could inform future patients: “I’m sorry to tell you this, but you have The Crams” )
… Consider, and call for the mourning women to come; send for the skilled women to come; let them quickly raise a dirge over us, so that our eyes may run down with tears, and our eyelids flow with water.
~ Jeremiah 9:17-18 The New Oxford Annotated Bible
Nowadays I take long walks and talk to dead people. And my favorite dreams are visitations. Sometimes just comforting glimpses, or on fortunate nights rich conversations and a visceral felt presence. Sometimes, when I’ve hit the jackpot I wake and am still surrounded by their smell.
But we don’t only mourn the dead. We must mourn everything we cherish, for all things are impermanent. We don’t get to hang onto much. And even wishes die and are reborn.
And those who cannot mourn and those refuse to will sicken and eventually break under the strain.
I am, and have always been, a moirologist, a professional mourner, a hired lamenter, a grief facilitator. Sometimes I think that is really all that psychotherapy practice actually entails – the ability to notice what is lost, and to make the sounds- the ritualized keening and ululation – that allows others to surrender to fate, to release their grip, to accept their losses and to bury their dead along with the hopes and expectations attached to them.
And although it made no sense to me at the time, people called me “wise” long before I was old enough to be entitled to the carry that label. Only now do I know what it means, and it is only this: I had learned, at young age how to lose things, to remember and acknowledge my losses, and to transform those losses into fertile ground to survive upon. And I did this while others around me pretended that nothing of import had happened at all.
When they called me wise all they meant was that they could sense I had survived something. Although I wandered for a while in the empty hallways of nostalgia searching for lost a time and a place that could never return, I had given up the futile search and chosen life. I had surrendered all false hopes and come to a new land seeking love and faith and sustenance.
In my adolescence and young adulthood I had to learn these lessons over again in the realm of romantic love, but it didn’t take me too long, with some therapeutic instruction, to learn that ritual lament and find my way across the gulf of grief for lost love.
And my years and years of psychotherapy, as client and as a therapist have shown me that mourning is a skill that must be nurtured and developed. And that those who have learned how to grieve are the ones who are able to survive, and love, and appreciate the extraordinary and delicate beauty of Life. And I remind myself of this as I support my children in facing down their own losses, rather than attempt to shield them from grief.
Only the professional singers of the funeral dirge are truly wise.
~ The New Oxford Annotated Bible: annotation Jeremiah 9.10–26
People seek out psychotherapy for every kind of loss and fear of loss imaginable. Job loss, lost love, lost opportunity. Lost hopes. Lost relationships. Lost childhoods. Loss of innocence. The loss of who we might have been. The loss of who we wish that others might be for us. The loss of the parent we needed but never had. The loss of potentialities that never came to pass. Lost youth. Loss of faith. Lost bearings. Lost motivation. Lost joy in living. Lost investments. Loss of limb and health. The loss of life. Lost friendships. Lost attachments and lost happiness. Lost trust. Lost time. Lost memories. Loss of respect and self-respect. Loss of reputation. Loss of safety and security. Loss of control and temper. Identity and soul loss. Lost freedom. Lost autonomy.
And the losses of essential privation – the things we yearn for and never ever have enough to even lose them.
And above all: what psychoanalyst Charles Brenner calls the “greatest calamities”: the loss of the object of our attachment and loss of that object’s love.
Mourning is commonly the reaction to the loss of a beloved person or an abstraction taking the place of the person, such as fatherland, freedom, an ideal and so on.
~ S. Freud, On Mourning and Melancholia
We fear such losses. And we resist the loss itself. And once all is lost we then resist accepting our losses. And there are so many scenarios where the only choice in front of us is between losing something and the loss of something else.
All our “frantic attempts to avoid real or imagined abandonment” are in service of one thing: trying to avoid or forestall mourning. If we can’t grieve, we can’t accept and we can’t release. A refusal to mourn is a refusal to accept the reality of impermanence, injustice, violence and mortality. If we don’t mourn we will abandon what is real to preserve a comforting illusion, a very expensive one, an illusion that may cost us everything.
I resist too. I cling to my illusion. Such resistances are part of the process. We pretend we are fine. Or that it never mattered. We summon our aggression and ride on our agitation or just feel some judgmental contempt for our utter powerlessness in the face of it all. Sometimes we are just so tired of having to be sad, again or at all and we just would rather not thank you very much.
My therapist was particularly skilled at cracking through my crusty resistances to mourning with a simple technique I have come to call “the boo-boo face intervention.” I’d be talking about something completely normal for god’s sake, some story or recounting some event that really wasn’t the thing that bothered me one bit because… why was he making that face? Why did he look so sad all of a sudden? His brow furrowed, his lower lip in a slight pout, a grimace of pain in his eyes… Sometimes he would close his eyes and his breathing would change and I could see him contending with some vicarious hurt. I would look at the sorrow in his face and see that he was embodying the loss that I could not yet acknowledge, he was not sorry for me, he held my sorrow for me, until the pain of it reflected in his face, and then back to me, and a hot rush of tears raced up through my throat and the pain sounds were now coming out of me and I was the one grieving.
He was my designated mourner.
Mourning allows us to have compassion for ourselves. It is a way of being tender to ourselves in our defeat. Mourning is pain which we are allowed to accept as an understandable and justifiable response to real events. We don’t blame ourselves for sorrows which we have defined as mourning. Mourning allows us to see our sorrows and losses as natural, expectable.
It is also most remarkable that it never occurs to us to consider mourning as a pathological condition and present it to the doctor for treatment, despite the fact that it produces severe deviations from normal behaviour. We rely on it being overcome after a certain period of time, and consider interfering with it to be pointless, or even damaging.
~ S. Freud, On Mourning and Melancholia
We can more easily allow waves of sorrow and pain to move through us – without castigating ourselves as weak or sick – because it is natural to mourn. If we are terrorized by mourning, or if we reject the flood of grief we will find our ability to love withers as if in a drought. If we are so afraid of loss and its processes, we will love life – and each other – less, in a sorry attempt to protect ourselves from inevitable, ubiquitous, loss.
If we hold ourselves out of grief, we will also deprive ourselves of the opportunity to engage in actions which honor what we have lost and allow us to live meaning-filled lives.
Avoiding loss begets loss.
There is no way out without being a loser. The only way out is through.
And although my mastery of the the boo-boo face lamentation ritual has never reached the skill level of my dear mentor’s – I can rarely help a client cry with just a glance – I have found my own funeral songs and spells that I begin when I am the first professional mourner on the scene of an unmourned loss. That is what we do, a great deal of the time, those of us who have therapy offices – we are the ones who initiate the dirge.
In all the squares there shall be wailing; and in all the streets they shall say, “Alas! alas!” They shall call the farmers to mourning, and those skilled in lamentation, to wailing; in all the vineyards there shall be wailing, for I will pass through the midst of you, says the Lord.
~ Amos 5:16-17 The New Oxford Annotated Bible
We begin the mourning process so that others can join in with the sound of keening. So they do not need to be frightened by the sound of their own sorrow alone, their own voice crying out.
We lead the way in, and know the dirge and the ritual and the dance.
We know how the waves rise and fall. We set the pitch and tone of the mourning cry.
We know that the flood of tears fertilizes our lives.
We know how it begins:
Blessed are those who mourn, for they will be comforted.
~ Matthew 5:4 New Oxford Annotated Bible: