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:
A hand fan sits at the side table by my office chair.
I have become a lady with a hand fan.
And when a client tells me something that makes me laugh, or makes me anxious, or activates my over-protective anger on their behalf, or touches on some topic that leads toward a shame of my own – or sometimes for absolutely no reason at all – I feel a sudden flush, like a little lightening strike – that sends tentacles up and down my arms and up to my throat, past my ears up to my scalp and think:
Uh oh. Here it comes:
And then a sweat starts to break out on the back of my neck, and under my chin, and at my hairline, and across my nose and down my arms and its getting hotter and hotter and I know that is no where near peaking and passing yet. The client (it doesn’t matter man, woman or queer, young or old, four hundredth session or an initial consultation) is still talking and I try not to interrupt but all this heat is rising with an adrenal surge – if I don’t do something I’m going to have to run from the room and tear off all my clothes and plunge my head into a basin of ice water – so I go ahead and reach for the hand fan. “Keep talking” I say, “I’m listening” and I am, “Don’t mind me” as I start fanning myself frantically as the damp just begins to cause my glasses to slide down my nose. My hair frizzes. I push my glasses up and they slide back down. I flap flap flap flap and fan and fan myself until it passes, and the tingle has subsided, and the cool comes back in a relieving wave like when you open the door of a too hot sauna after the doorknob spun uselessly in your hand a second or two and you weren’t at all sure you’d be able to get out.
They look at me confused, or annoyed by this new and intrusive behavior: “Hot flash” I say. “Just a fact of life. I’m listening. Go on.”
A reminder to the client, and myself, that everything changes.
My gray hair is no longer premature. My glasses, even in their pleasing frames, are progressive lenses. Without technological advances they would have been trifocals. My paternal grandmother’s genetics announce themselves with the arrival of glaucoma and high ocular pressure that is nowadays easily managed with daily eye drops. I now suddenly have bad feet – neuromas, plantar plate and facia injuries. Mostly just genetic signs of age. Like my maternal grandmother I now wear orthopedic shoes. Thankfully I have cuter options to choose from than the heavy black lace ups she had to wear. I don’t get to run outside anymore. Too hard on the infrastructure. I’ve shifted to an elliptical in my suburban basement.
Wrinkles I don’t care much about even if I don’t love the little sag I see coming in under my chin, and I work hard to be kind toward my changing body shape. My weight has stayed consistent – not skinny, not fat – always hovering around plump – but I notice age is redistributing things. Belly, bottom expanding – the parts of myself I was most ashamed of in youth and battled to suck in and minimize – now assert themselves and demand acceptance. I try to embrace the challenge – and the metaphor – and integrate the suppressed parts of myself with compassion, and reach for new forms of healthy pride. I shop at stores that accommodate the tastes, desires and bodies of women of my age. And I am free at last from the curse of fashion magazine covers that compelled me to compare myself with those impossible airbrushed images, always falling short of my unconscious, internalized wish to identify with them. Now it is simply all too absurd and therefore nullifies their spells
I am not old, but I am older. And my “young” clients – who I met in their teens or early twenties when I was in my mid-thirties – who I watched grow up, are no longer young. In their late thirties and forties, I helped initiate them into adulthood and I will eventually initiate them into later middle age.
So I’d better pay attention because I don’t recall anyone initiating me. Or maybe in the arrogance of youth, I rejected the models of older women around me. Even though I admired their wisdom, I was afraid of their aging bodies: their sensible shoes, their cute little attempts at working out, and their colorful dresses with “flattering” waistlines. Their little nothing-to-worry about skin cancer surgeries. Their forgetfulness and their brain-farts searching for common words. Their white roots showing in between colorings. Their chin hairs. Their chunky jewelry. Maybe I did dismiss those women’s bodies and their relationship to them, and the ways they had to learn to re-adorn themselves – by thinking of them as “old women” and their rituals as nothing for me to have to worry about for a long time.
And laughably they were likely all my age or younger than I am now
But I will have to initiate my tribe of clients into this space. So I have to listen to my body, and not battle with it, and do this with dignity and humor and face reality and find meaning and pleasure in it.
And celebrate the things that I have escaped from: street harassment, heels, henna and sunburned tummies. And revel in the things I have earned: long contemplative walks. The freedom that comes with being too exhausted to engage in any bullshit at all.
And take heed when I am with older and elderly clients, and clients entering therapy at this age, my age, who I see more of than ever before. Which makes sense: Why would you choose a therapist who hasn’t even begun their descent? Who hasn’t reached what we optimistically call midlife or who can have only abstract empathy as you are facing the decline? So I listen to them closely. I watch them reach for unfinished business, and allow themselves to engage in wishes long forestalled. I watch them morn the foreclosure of lives they hoped to live but will clearly not now or ever come to pass. I listen to them contend with the loss of the generation in front of them and the arrogance of the generation behind them. I hear their anxiety about their financial futures, their fear of becoming obsolete in the work place, the challenge of retrenchment, of down sizing, of moving into smaller spaces, one level, without too many stairs. I hear them battle with an unending string of doctors appointments – too many specialists and a list of medications that keeps growing.
I hear of retirements and second chances at passions set aside. Of demeaning part time jobs. Of motorcycles impulsively purchased. Of unexpected divorces and break ups in long long term relationships. Of “practical” careers abandoned. Of gardening. And what its like to find themselves to be the old guy or old lady at the gym, or studying French, or learning to paint, or preparing to climb a mountain because they have always wanted to. Of libidos lost, and prostate problems and erectile dysfunction and painful intercourse. And wild, unexpected affairs with partners twenty years younger. And loneliness. And anger that the light is too brief and our time too short and how quickly it all flies by, in the blink of an eye. Of aches and pains and joint replacements. Of stroke and heart attack and cancer and dementia.
Of the audacity and the tender support and impatience of adult children. The excruciating pain of encountering one’s own failed parenting. The surrendering of freedoms, and privacy and driver’s licenses. Of grief – first of lost mentors, parents and elders, and then large die-offs of peers: a small wave gone in the mid-50’s, another cluster disappears in their 70’s. Of phones filled with phone numbers of the dead. Of the deliciousness of grandchildren. Of the anxieties that come with fixed, dwindling, or disappearing incomes. Of fear of mortality. And worse, the fear of infirmity coupled with lack of compassionate care.
Of the wacky, cackling joy of being an old coot who is less afraid then they have ever been because there is little to lose and everything to gain. Of knowing how to grieve and having all hubris modulated by the inherent vulnerability of staying alive for sixty, or seventy or eighty years. Of the relief, the deep deep relief of not having to psychologically strive any longer to be things that you are not, or never really chose to begin with.
And of the memoirs they will write.
Their stories initiate me. I watch them lose their way and find their stride and settle back into power spots which sustain them for awhile until everything shifts again.
I store the stories of my elders in my life and my practice as guideposts – to learn from their mistakes, to orient myself, and to offer as a template to those behind me who will be joining the circle of elders eventually.
If they are lucky.
It all changes and keeps changing. Our work in psychotherapy changes dramatically as we age. It is no longer about constructing an identity, staking a claim, separating from family of origin, or the lure of great accomplishments.
The problem of the adult is very different. He has put this part of the road behind him, with or without difficulty. He has cut loose from his parents, long since dead perhaps… has possibly come to realize that what originally meant advancement and satisfaction has become a boring mistake, part of the illusion of youth… Here there are no fathers and mothers; all the illusions he projected onto the world and upon things gradually come home to him, jaded and way-worn. The energy streaming back from these manifold relationships falls into the unconscious and activates all the things he had neglected to develop.
~ C. G. Jung, Two Essays on Analytical Psychology, paragraph 90
The energy comes streaming back. All that was set aside asserts itself. It surges up from underneath the ego structures that we spent the first half of our adulthood constructing. It breaks out like a sweat, like a flash. We can thrash and panic or we can, flap flap flap, grab hold of our hand fans and cool the hell down – allowing it to move through, knowing that this is the task at hand.
There are great losses ahead as well as great opportunities to reclaim aspects of our identities long forsaken. Trials and treasures. Blossoms and sunsets.
Me change! Me alter!
Then I will , when on the Everlasting Hill
A Smaller Purple grows –
At sunset, or a lesser glow
Flickers upon Cordillera –
At Day’s superior close.
~ Emily Dickenson
In psychotherapy no subject is off limits.
We need to be reminded of that sometimes.
Some clients (and some therapists) have been taught medical models of psychotherapeutic care that suggest therapy clients should be focusing on “personal problems” and not “politics.” That talking about their place in the larger world is psychotherapeutic “resistance.”
Well, sometimes it is but sometimes over-focusing on individual problems is the resistance.
I’ve had clients who have talked about nothing other than the latest headline in the Daily News, for years. And clients who are so insulated or overwhelmed that they make no reference whatsoever to 3,000 people dying a mile from their home on September 11th, or a hurricane that floods and incapacitates the very city they live in.
Some are too porous, unable to insulate themselves, buffeted by every news flash, every Op Ed. Some have lost, or never had, the ability to discern between what is their business, their next necessary step, their ultimate work in the world and what lies beyond them, what is a fruitless or even destructive diversion.
Others live as if the larger community has no impact upon them, as if they have no civic or collective responsibilities of any kind.
We all live, embedded, in a particular personal, relational, familial, local, national, international community.
REBECCA: I never told you about that letter Jane Crofut got from her
minister when she was sick. He wrote Jane a letter and on the envelope the address was like this: It said: Jane Crofut; The Crofut Farm; Grover’s Corners; Sutton County; New Hampshire; United States of America.
GEORGE: What’s funny about that?
REBECCA: But listen, it’s not finished: the United States of America; Continent of North America; Western Hemisphere; the Earth; the Solar System; the Universe; the Mind of God–that’s what it said on the envelope.
~ Thorton Wilder, Our Town, Act 1
We are fragile pack animals living in a particular time, in a particular place, at a particular point – embedded most certainly in the March of History and maybe also in the Mind of God.
Our personal patterns of denial, anxiety, despair, action and paralysis can affect the course of history as surely as historical forces shape and build, contort, lift up, oppress or destroy our lives
My grandmother-in-law told us a story over and over (retold here with my husband’s permission) about how she had learned of the concentration camps from a refugee who had escaped the camps by some miracle, to whom she had offered a meal as he fled, passing through her small town in Hungary. Her assimilated Jewish husband and family didn’t believe her when she told them about what was coming their way. “You are being hysterical. It would never happen here. The Archbishop dines in our home!”
She wanted to flee. No one would listen. She was a canary in a coalmine, smelling the lethal gas long before the others who were focused on the problems and pleasures of everyday living. She could feel the vibration of the giant, pounding, destructive footsteps of a world historical event as it lurched toward her, soon to load her onto a cattle car annihilating her husband, her siblings, her nieces and nephews.
Her primal fear mounted, hysterical or valid, she couldn’t be certain, culminating in a choice between horrors: Two cyanide pills placed on the table. One for herself, one for her thirteen year old daughter.
“When they come they will put us in a terrible place, we will starve, we will be tortured. They may separate us. We will suffer. We will almost surely be killed. Or, we can take these pills now, together, and die peacefully. What do you choose?”
Our lives shape all of history and history shapes our whole lives.
But in each moment, all any of us can do is to assess, for ourselves: Are my fears founded? Are they over-reactive? Is this a cloying worry or a healthy fear? All any of us can do is to question ourselves: Am I too impervious? Am I in denial? Am I ignoring the signs and signals? Will I be on the wrong side of history? Or is this background noise that has nothing to do with me, that would be pointless to get caught up in?
Her daughter chose life. And they stayed together and survived the horrors of two deadly concentration camps – but the horror never left them. It shaped them forever, and their family and my family.
So: Sometimes I will explicitly ask clients how historical/political events are impacting them. I am certainly asking these questions now, at this point in time, in this particular moment in history.
Clients whose identities are marginalized or oppressed don’t assume I am safe to talk to unless I actively invite the content in. Other clients may simply not know that it’s considered legitimate for them to examine their place, their responses and responsibilities inside these events. Some need to be gently nudged awake or even shaken. Some need to be soothed. Some have constructed denial bubbles to insulate themselves but I can feel the anxiety churning underneath. A few know exactly how they are effected, monitoring their tendency to flood or to shut down or both – and actively work to stay calibrated and grounded. The activists I see are exhausted, absorbing so much vicarious and community based trauma they need extra permission to pace themselves. Some struggle so intensely with the pulls of their own internal conflicts – that there is scant energy left to take note of world events swirling around them.
The place where your identity makes contact with your community, your nation, and the historical moment is you too, and is absolutely as legitimate to discuss in psychotherapy as an argument with your partner or conflicts from childhood.
We can suppose we are insulated. But we aren’t really. It’s an illusion. We live in community. Our communities affect us like the water we drink, the air we breathe.
Almost everyone is feeling of powerless, worried, afraid of the deep polarizations taking place all around. Many are in active conflict, debate, estrangement with family and friends. Some feel that they are asphyxiating in avoidant silence. Some have drawn battle lines. Almost everyone expresses feeling simultaneously activated, and concerned that any action they may take will be impotent or destructive to themselves or others.
This tension of this particular place in time and history is a real psychological force that needs to be tended to and observed. We don’t know whether the tension will dissipate or constellate, and we don’t know how our choices will affect the outcome or how the outcomes will affect us.
Psychotherapy, at its best must make space for all of this too.
But listen, it’s not finished: the United States of America; Continent of North America; Western Hemisphere; the Earth; the Solar System; the Universe; the Mind of God.
(Note from Martha: “A.”, who meets me in my office for psychotherapy wrote a thoughtful and honest essay about having a psychotherapist who also writes and blogs about the processes of psychotherapy. I invited A. to share the piece here as part of a conversation about the challenges, annoyances and benefits of encountering your psychotherapist’s writing online. Some of this we have discussed together previously in the office, some of this was in the essay previously shared with me, and some of this we are processing together, as we write, for the first time.)
A: One of the first things that I asked you, when I became a client, was this: how did you experience having a blog reader materialize in your office? What was it like to have someone who had read your words, corresponded a bit by email, now sitting across from you in the flesh?
MC: It was strange. And touching. It meant that you already felt some connection, some basic alliance to a deeply personal part of me – it made me feel vetted and chosen for the work we would undertake together. Since you arrived (you started reading my blog very early, well before I closed the comments down), people have come to see me who are aware of the blog, or who have found the blog in pre-Googling me and decided that they mind or don’t mind or like or don’t care about the blog. But as far as I know, you were the first, and now one of very few people, who had an internal relationship to me as a writer, and who then took the risk to find out who I was, externally, as a therapist.
And it wasn’t just any piece that you contacted me after, it was a piece that was deeply personal to me, and that wrote about my own woundedness and healing and “re-membering” – and it meant a great deal to me for that to be so explicitly meaningful to someone that they would make an appointment with me.
A: What if I had just stayed a blog reader? What if you hadn’t emailed me back?
MC: I try to email everyone back – although I don’t often have space any more. I think that I remember that there was a significant wait between the time that you contacted me, and the time that we were able to begin working together. What if you hadn’t decided to wait? What if you felt rejected by that and never contacted me again?
We would have both missed out on so much.
A: Yes, I waited quite some time before summoning the courage to ask for an appointment. Via email, of course. That email went through many draft forms, and sat for a few months, before I finally hit ‘Send.’
I remember being taken aback by your size. You are quite petite and I guess I expected someone with such a big voice to be bigger. Not big, just bigger than you are.
MC: I don’t sound like a short little fast-talking person when I write? I wonder what I sound like?
A: I also had to reconcile the voice I imagined you having, with your real voice (of course, now that you’ve taken up podcasting, readers can know exactly what you sound like and no longer need to imagine your voice). I had my own idea of how your words sounded to my internal ear, and while I don’t have the words to describe that voice, the sound I imagined was different coming from your mouth to my ear. Like the way the character you imagine in a book doesn’t exactly match the actor cast in the movie. It takes some getting used to.
MC: It must have been very strange to have to encounter what you had projected on to me, and what limitations and imperfections that are inevitably edited out of my writing “voice.” You had to encounter my humanity and mourn some idealizations that had built up while you only encountered me in the ether.
A: Yes, that’s true. I think this is where I get annoyed with the people who only know you as the idealized therapist from your blog. In your writing, you can make everything look right, even if it’s not in real life.
So my relationship to your blog is complicated.
MC: So is mine.
A: On the one hand, it’s how I found you. On the other, it brings up a whole host of anxieties: are you writing about me? Why aren’t you writing about me? Why didn’t you tell me you were going to write that? Did you think of telling me about that post ahead of time?
MC: Have you ever felt unsafe or unprotected there, by me? Or are you talking more about the disconcerting experience of hearing how the work, and sometimes even specifically our work together, sits with me, and turns into a lesson for me over time?
A: No, I have never felt unsafe or unprotected. I think it’s more of feeling invisible.
Is it strange to have a therapist who blogs?
MC: I bet the answer is yes – although of course psychotherapists have been writing about their work and their cases for generations in books and theory, in psychoanalytic journals, in case presentations. But I suppose, that the intended audience in those circumstances is other psychotherapists – but they certainly aren’t the only potential audiences. Clients can purchase journals and search the archives and download abstracts of publications by their psychotherapists. I think that I decided that those publications were “hidden” behind largely illusory boundaries and pretend firewalls. And that if my writing could be available for purchase in a journal, it could be available and accessible for free online.
I’ve heard my psychotherapist present a case before – although thankfully it wasn’t MY case. But I suspect that if I did encounter something he had written about us, or me, or about what our relationship engendered in him, that I would be largely (but not entirely) comforted by it. And that comforted or not, it would be meaningful and incorporated into our relationship in meaningful ways.
A: Should I even read your blog, or not?
MC: Of course I will tell you that you are welcome to. I wouldn’t post it if I wasn’t able and willing to talk about whatever it may stir up or activate. But for yourself I suppose the answer to that question is what do you look to the blog for? What are you seeking there? What do you learn that isn’t revealed to you in session, or couldn’t be if you asked? Do you hurt yourself with it? Or comfort yourself? Does it soothe you? Or overstimulate you?
A: Initially, I look for signs of me. I have this ritual anytime you publish a new blog post. I don’t click on the link immediately. I wait, and when I’m ready to take it in, I quickly scan the entire essay, looking for any hints of me. Only once I know if I’m in the post, or not, can I give it a proper read. Sometimes I’m relieved to see that I’m there, sometimes I’m annoyed to find hints of myself; sometimes I’m relieved to see that I’m not there, sometimes I’m annoyed that I’m nowhere to be found. It’s complicated.
Sometimes I read just to understand what’s going in with you, to figure out what topics or ideas are being stirred up in your head, that wouldn’t come out in a session otherwise. Sometimes the blog is very comforting, present and past posts alike. Sometimes current posts are very over-stimulating and I can’t read it at all. It largely depends on the topic, and where I’m at in my own internal experience, and where we are at in our relationship together.
MC: That makes sense. I’m glad that you have found a ritual to create a frame around how you read it.
A: When we first started working together I feared I would never be interesting enough to feature in a post. Later I cringed to see anything that felt remotely familiar.
MC: Cringed in what way? Pain? Fear? Or was it the uncertainty if it referred to you or us at all? Have you ever read anything that made you worried about my allegiance to you?
Heinz Kohut talks about the need that we have to be reflected back to ourselves in relationships, in ways that are simultaneously accurate and admiring. That many of us have grown up in a hall of fun house mirrors that have taught us ugly distortions about who we really are. It sounds like when you read something about a fictionalized or conglomerate client (i.e.: “Some do this, and some do that”) you might worry that you are the client being discussed, or that it activates a fear of being distorted? Or, when you have felt certain that I am processing something about our relationship have you felt unfairly represented?
A: I am all too familiar with that fun house of mirrors. I just cringed to see me, or us, or our work together, there in writing, on the internet, for everyone to see. It often feels like looking at parts of my soul from outside of my own body. And yes, I often feel disoriented and not sure if I am seeing myself or something else, all together, entirely different.
MC: It sounds like when I try to sift what I hear and what I learn as a psychotherapist down to its universalizing core – and it strikes you there – that it feels simultaneously relieving, exposing, erasing (feeling invisible). I do try to really boil the themes and ideas down to the marrow – I never write about anything that I don’t recognize as being located in the depths of my own soul, as a client, as a therapist too.
One of the most popular blog posts I ever wrote, I wrote thinking of you, almost as a prayer for you, and I don’t know if you saw yourself in it at all.
A: Not at the time. I wish you had told me this when you posted it. It would have meant a lot to hear that from you, at that time. I treasure it now, it is a wonderful gift, and it means a lot to me that your words resonated with so many of your readers.
MC: I think that it didn’t occur to me to tell you about the post, because I was trying to tell you, explicitly and directly exactly these thoughts in each session – and it seemed hard for you to take it in.
A: Well exactly, so maybe this was another attempt to get through to me? But this is what I mean when I say that you do such a good job of writing about the every-person that it seems everyone sees themselves in your writing and stories. So sometimes it makes it hard for me to find myself among the collective, among the shared consciousness and unconsciousness and archetypes and histories.
My favorite line in that whole post is this: “Sometimes when things turn brutal for someone I care about I’ll just hang on for dear life.” It is comforting to know that you will hang on, and won’t just drop your end of the rope.
But also, I am very conscious of “using you all up.” Of demanding too much, or taking too much, that you have nothing left to give. That is always a fear of mine. Even if you do your best to regulate on your end, I still worry that I am too much.
MC: I never experience you that way, I didn’t experience my clients in day treatment program that way either – I just needed to eat my lunch with the door closed, to feed myself, so I could come back to them.
A: Then there’s the reality that it’s your blog, and your side of the story. Sometimes it seems your readers hang on your every word, oblivious to the parts that have been edited out.
MC: I try to edit out parts to protect my clients – and report, as accurately as I can, my own ugly and unflattering failures – but I have noticed that weird phenomena – that when you try to write honestly about things you really truly feel failed at, strangers idealize you as being “brave” or “authentic” when sometimes I am neither – I am really just writing about failing.
A: I know. I don’t think all of your readers realize that you can actually fail. Some see you as this “amazing” and “perfect” therapist (you may have closed down your comments, but other bloggers will re-blog a post, and those comments are still wide open).
MC: I’ve never ever read that or followed those links. It never occurred to me.
A: I know you laugh at my references to your “fan club,” but you have one. And I think it even surprised me, to witness first-hand the extent at which you could fail. And that’s without ever idealizing you as the perfect therapist. I thought you might be a good fit for me, and I knew from your blog that I should be prepared for mistakes and mis-attunements.
MC: You and I hit a very hard impasse, while you were really just rounding the bend of your first year in therapy with me – and, in my mind – it occurred at the intersection of a few normative misunderstandings, miscommunications as well as some major misfortunes. As a member of the “sandwich generation” caring for my elders and my children, my mother became suddenly seriously ill – and I was under extraordinary strain: logistically, financially, emotionally. I was just generally as exhausted and depleted as I have ever been in my life, and I was not always able to protect my caseload, or you, from what was happening to and around me.
A: Sometimes it makes me feel trusted that I know more of the story than you share in your blog. Sometimes it makes me feel angry that you’ve left a critical piece of information out and I wish you hadn’t disabled the comments so that I could write in and set the record straight.
MC: Can you tell me when? This is your chance! Set the record straight! If you ever have felt distorted I will always want that clarified. Or are you referring to things about myself that I cannot see or understand easily without checks and balances of others in place? Even when it stings, I’m glad, ultimately, to learn about my own shadow from you.
A: You wrote a series of posts on conflict in the therapeutic relationship, at the exact time that we were embattled in a conflict of our own. It was the only time you told me in advance of a post that you were working on. You told me that the post was not about me. I didn’t believe you then, or now. Maybe it wasn’t entirely about me, but I was definitely in there. How could I not be?
MC: I still don’t experience that piece as being about you or about us. I wrote that piece trying to process what I was left with after a newish client walked out on me, quite enraged, after just a few sessions. It felt like a violent refusal to enter into conflict – and I was left with all this stuff that I really wanted to say and nowhere to put it. It was during this “sandwiched” time – and I was late or missing sessions in order to shuttle my mother to chemotherapy appointments and frankly I was pissing people off left and right. My kids were enraged with me because of my unavailability, my mother needed to handle more alone than she was capable of, I disrupted or disappointed or upset my entire caseload. I didn’t think of that piece as being about you, because we were actively staying connected in our conflict as hard as it was – I wrote it aimed toward all the clients I’ve ever known who could or would not stay when conflict emerged, and what I wished could have happened instead.
But I can never be sure what will emerge as an unconscious influence in something I’ve written. Of course you were present in that piece, as were all the people I was in conflict with at that time, all the people I was disappointing. But I wasn’t consciously focusing on our impasse as I wrote it. I recognized later that it could be read as applicable to us, which is why I wanted to give you a heads up – because I knew that you actually read the blog.
A: I too would have bolted if conflict erupted when I was still a “newish” client. I nearly bolted more than a year into our work together. What really upset me was that it felt that no one seemed to realize that there were actual clients behind these posts. That there was someone in sheer and writhing pain. I just wanted to scream “there’s a real person over here, in agony, curled up in a ball… could you all stop waxing and waning philosophical for a moment and pay attention to the actual person, over there in the corner.”
MC: I’ve been in that position in the past, curled in that ball. I knew you were in pain during that time. I didn’t forget your pain. And I know, with regard to that particular conflict, it is sometimes still present.
A: Yes, there can be a good side of anger, but I just felt that my side, the angry, dark, hurting side, was left out. I felt hurt, and like no one cared, because “hey, isn’t this anger stuff in therapy great!” No, it’s not, not when you are in the thick of it.
MC: It is terrifying and horrible when it is activated and we are lost in the thick of it, as you say. It is learning to survive it and find ways to regain and create intimacy that is the “great” part – but that is only great with some hindsight. In real time it is terrifying.
A: Sometimes it makes me feel annoyed that your readers get the benefit of our work for free, that they get a nice-and-tidy summary of one of our sessions, without having to put in anything. We did the work, I paid the fee, and your readers reap the benefits!
MC: You mean when our conversation teaches me something in real time right in front of you (as in that link)? And then I write out the pieces that came together so that I can remember it, and then I share it? I bet what makes you angry is that YOU taught ME that lesson through our relationship, and that I then made it my own, and shared it with others. But I HOPE that works in the other direction too sometimes? I hope that we always teach each other and can hang onto what we learn together, and make something of it.
A: I don’t mind you sharing our work with a broader audience. Like many who blog about therapy, and the kinds of issues that brings one to therapy in the first place, I’m delighted and touched if my own experiences and our own therapeutic alliance and processes can be of use to anyone else out there. If what we work through together in session can have a life and meaning outside the closed doors, and help alleviate the pain and suffering of another, then I’m thrilled.
I guess it just becomes hard when our work done together becomes your work. It’s not that I’m mad that you shared it, it’s that I wish for an acknowledgement from you before it gets shared out to the world. “The work we did today in session was really important and meaningful and I want to blog about that. Would that be okay with you, even if I can’t mention you, directly or indirectly, because I need to protect your confidentiality?”
MC: It’s difficult because I don’t always know what you will hear yourself in, or where you have entered into a piece without my awareness. I work very hard to disguise everything, and really think of people in the aggregate when I write. I don’t always know where you are. And even in the piece that you experienced as a very direct summary of our session together – as I wrote it I was thinking about all the ways that love is soft, and hard, and beautiful and violent. And again, when I was finished I could see how it overlapped with our discussion and other clinical and personal interactions that I’d had. And my own therapy and therapist too. I will make this commitment: when I know that I am consciously writing about us, I will be sure to tell you and ask. And I can I ask you to tell me anytime you see our relationship enter into my writing unconsciously? It is a very soupy thing. Our lives and our unconscious selves, and our “souls” without being too dramatic, become tangled up together – we become part of each other in ways that I image we don’t always recognize.
A: I know that piece wasn’t just about me, but about other relationships that you were working through. If you are wrestling with a certain issue, it is not surprising that you start to see it everywhere. And then we all work together, disconnected but collectively through you, to make sense of it all (again, making it hard to find one’s self in your writing).
It just felt uncanny – the timing of when you posted, the words and phrases that sounded verbatim to what we had talked about. I have no doubt that you worked out something for yourself when we were together. But I was a part of that.
Sometimes I think I get angry because you beat me to it. You figured it all out and wrote it down and posted it up to your blog before I even had a chance to sort through my own reactions and experiences. You’ve got a blog post written and I haven’t even made it down the elevator. And that, no doubt, adds to the confusion: what is mine, what is yours, what is ours together? How did I feel about that session? What came out? What didn’t?
MC: “What is mine, what is yours, what is ours together?” These might be the core questions of all intimacies.
A: I don’t have an audience with whom I share what I learn in therapy. I try to use it to make me a better mother and a better person, in general. But I don’t actively share any of what I learn with anyone. I indirectly share what I learn with my children. If nothing else, I strive to end the cycle of passing on generational wounds, for their own sakes. I don’t want them to have to re-learn things as an adult that they should have learned the first time around as kids.
I do want your readers to know that your openness and transparency online is magnified in session. You answer direct questions, you readily share your history and experience when it is applicable, you exhibit real human emotions whether it be joyful outbursts or tears of sadness. I feel I know you, the real you and not just some therapist persona, and that makes it easier to trust you.
MC: I think this is one of the kindest things that anyone has ever said to me.
A: You are human after-all, and not the super-human therapist on your blog.
MC: I keep telling people that, but the more you explain it to people, the less they believe you. Jung says that it is absolutely thankless to argue with the projections of others. And I am really grateful for all the humanity you have brought to our work together, and all of the ways you have encountered, and survived, and been patient, and kind, and held me accountable, and forgiven me for my own humanity.
A: That’s really irritating. How am I meant to top that? I guess it is YOUR blog, and by rights you should have the last word. But I’m not going to let you, not this time.
MC: Ha! Go for it. Bring it home!
A: In the end, I am more grateful for your place in social media than I am annoyed by it. I’ve (mostly) figured out where I live in the blog, where I am referenced, which posts are mine and which ones are inspired by me. Most of all it’s a way to connect, non-intrusively and from afar, as I count down the time to our next session. And at the end, connection is at the heart of a good therapeutic alliance.
Note: This seemed more like a post about writing than a post about psychotherapy, (although those identities are increasingly tangled up for me) so I posted it at Subtext Consultations. Here are the first few paragraphs and a link to read the rest:
How do I write about writing without talking about what I am writing about?
I don’t mean to be cryptic, I don’t mean to build suspense or be tantalizing – because the final product, if there ever is one, will a long way off.
So don’t hold your breath.
So there isn’t any point in my being coy – but I do need to find ways to skirt around the subject of my writing in order to talk about the process, and to acknowledge the incredible gift that has been given to me in the form of a two week stay at an extraordinary residential library in Hawarden, Wales: The Gladstone Library.
To read further please click here.