Know Thyself

You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.

Not till we are lost, in other words not till we have lost the world, do we begin to find ourselves, and realize where we are and the infinite extent of our relations.

Henry David Thoreau

The highest, most decisive experience is to be alone with one’s own self. You must be alone to find out what supports you, when you find that you can not support yourself. Only this experience can give you an indestructible foundation.

Carl Gustav Jung

There is something both stabilising and terrifying about knowing ourselves. It is confronting to face the limits of our strength or patience or generosity in a certain situation, as well as gratifying to find previously unearthed depths of resilience.

In cardiology, the contractility of the myocardium, or heart muscle, is demonstrated by the Frank-Starling mechanism. The ventricles (the two largest chambers in the heart which pump ‘old’ deoxygenated blood into the lungs, and ‘new’ oxygenated blood round the body) are very adept at responding to increased metabolic requirements. As we exercise or are dehydrated or fight an infection, our hearts work harder, pumping faster and with increased pressure. In the young and fit, the heart’s residual capacity to increase its output can be considerable. However, in certain states such as diseases of the heart muscle, increased systemic resistance (i.e. high blood pressure), or increased pulmonary pressures, the ability of the heart to keep pumping harder and faster starts to become compromised. Whereas the myocardium previously impressed with its ability to keep up with the body’s demands, it now starts to drop off – the downward trajectory of the Frank-Starling curve.

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Copied from https://www.studyblue.com/notes/note/n/cardio-step-1/deck/5257541

We all have an optimum point of operation and varying residual powers to increase our output in response to life’s demands. Applying for a new job, completing exams, raising children, getting over a broken relationship; these life stressors test our ability to rise to the challenge and increase our output for what is required in that circumstance. Some people have marathon runner’s hearts and the resting pulse rate of 40 only gets above 70 after a lot of stress. Others maybe have an underlying structural abnormality, or a defect in the heart wall which limits their ability to increase their metabolic demands in the face of stress. Likewise, some people have the biological make-up, which has flourished in a nurturing environment, to be able to operate effectively under certain levels of stress. On the other hand, those who have a genetic predisposition to mental illness, a personality or temperament, which does not tolerate stress well, and who may have been raised in an environment which has not fostered resilience, will not be as able to easily rise to the demands of common, if difficult life stressors.

What the shit am I saying? Why is a psychiatrist dredging up his undergraduate cardiac physiology?

I suppose I am diplomatically trying to say I feel like, over the last three weeks, I have tipped over the edge of optimum function and appear to be slipping down Starling’s curve. I’m feeling a bit flabby and puffy, and like my lungs are becoming soggy with some extracellular fluid which my heart is not optimally pumping out anymore. Perhaps a touch of heart failure; not yet cardiogenic shock.

Yes, stress, uncertainty, anxiety, tiredness are taking their toll. Much easier – but perhaps more dramatic? – to describe it as heart failure.¹

It’s two and a half weeks since we bid part of Eva’s body goodbye. The surgeon removed 29 lymph nodes from her right axilla; five of them were found to be affected by cancer. She’s been left with a beautifully tidy scar, recurrent collections of fluid (seroma) which need drained weekly, the beginning of cording (tightness and pain in the connective tissues in her right arm), and lots of pain. The pain is now much improving, but she will be unable to lift our hefty toddler for another couple of weeks to allow the wound to fully heal.

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In a sense, Eva’s bilateral mastectomy and the removal of the lymph nodes felt like some sort of climax in this whole palava. The chemotherapy was an arduous, life-sapping, undulating experience. The surgery posed itself as a definitive, life-changing, disease-ridding, body-redefining moment, which was infused with nerves, inevitability, hope, and anticipation. She, and I, were aware that the full psychological impact of the change in her body may not be apparent for a long period of time as the immediate concern is with recuperating from the post-operative period.

But what we did not foresee was the sudden decline into feeling stretched and stressed and anxious. It coincided with the arrival of a close family member of Eva’s, who has been very accommodating and helpful, and whom we very much appreciate having here. However, we were really rocked by how this changed the dynamics of our bubble which we had created for ourselves the last months to deal with everything. Our management strategy had been of slowing down, acceptance, making room, and alleviating what pressures we could. The introduction of someone else at this time, regardless of how helpful they are, changed this little world, and it is something that we both initially struggled to cope with. We became ratty and irritable with one another, hypersensitive and hyper-reactive. Funsies.

Rather than it being a reflection on anyone else, it appears to be a reflection on us. The security and ‘comfort’ we created for our family during this time was dependent on having firm boundaries and accepting external help openly and willingly. It has been unnerving and, I suppose, scary to allow someone else in to the midst of the little world to care for and be involved in looking after us.

So I feel I have decompensated somewhat. Decompensated is a perfect descriptor; in cardiology, decompensated heart failure is heart failure which has previously been stable and well-managed, but which is worsened in the acute setting of another insult (e.g. infection, ischaemic heart disease, etc); in psychiatry, decompensation refers to someone’s emotional and mental well-being deteriorating in the context of an external stressor (e.g. relationship break-down, perceived rejection, or substance use). I feel like my mental resources, and my stamina to exponentially increase my output, are plateauing and dipping.²

On Monday we met the medical oncologist (chemo doctor) who started Eva on tamoxifen, an oestrogen-blocking drug; hello menopause. On Tuesday, Eva saw her GP and practice nurse (for an hour, which involved a lot of crying and talking. Best. GP. Ever). In the afternoon we met the lymphoedema specialist OT, and then went to meet the surgeon who removed Eva’s dressing and drained lots of fluid from her chest. Eva cancelled an appointment yesterday as she was all appointmented out. In an hour we are going to meet the radiation oncologist (radiotherapy doctor) who will inform us about the next stage of treatment (five weeks of radiotherapy, five days per week).

In the interim I have accepted a new job working as a medical editor of a medical journal for three days per week from home, and I will return to clinical psychiatry for the other two days per week. I’ll start back there in about three weeks’ time.

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And in all of this there are deep existential experiences; obviously and foremost for Eva, but that is her business. Mine have evolved round defining my role as a carer in addition to being a husband and dad. Soon I will resume the role of doctor, and will learn a new role as an academic journal editor. These are the ‘surface’ demonstrations of what I do and who I am in relation to others.

On a deeper level, I have been vaguely aware of my dissipating patience and forbearance. There’s nothing like having an argument and being impatient with one’s recently surgically mutilated wife to make one feel like a bit of a bastard, or mimicking my daughter’s whining because IF I HEAR ONE MORE WHINE ABOUT BRUSHING HER HAIR BEFORE SCHOOL I WILL LOSE MY SHIT. (Postal address at the bottom for Father of the Year Award.)

So I need to acknowledge my limits. I need to give space to the other carer in our midst. I need to reach out for support so that I can be the supporter that I need to be. I need to take time for myself that I can give of my time to others. And this awareness can cause discomfort; a real, growing awareness of my own limits and tiredness.

I am knowing myself in ways that I didn’t ask for, and which are profound (to me). It’s my experience of my wife’s illness and its effects on her and our family. If it were quantifiable, it is ‘less’ than the suffering of millions – billions – of people around the world. But it is our suffering for the time being, and there is some solace in the effect of shared experience. We are all deeply, unchangingly, unanimously human. We are all idiots at times; we are all selfish and impatient and unkind and thoughtless. And it is our duty to know and recognise this. It is my job to figure out why I have reacted in an impatient, unkind manner; it is my choice as to whether I acknowledge my own limits and weakness, to make room for them, and find the help and support I need to be the husband or father I’ve committed to be. It’s my job to figure out when I am isolating and not investing in relationship with others because it is too much work, or too embarrassing, or vulnerability-inducing, and to ask myself, why?

Until we know ourselves it is difficult to help others wholeheartedly. Until we know ourselves – our drivers and passions, prejudices and leanings, strengths and weaknesses, and helpful and destructive patterns of thinking – until we have tolerated being alone with this knowledge, like Jung said, it is only then we can develop an indestructible foundation.

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¹Just to clarify, I do NOT have heart failure.

²Just to clarify, I have NOT (completely) psychologically decompensated.

Our Story of Vulnerability

Stop thinking about saving your face. Think of our lives and tell us your particularized world. Make up a story. Narrative is radical, creating us at the very moment it is being created. We will not blame you if your reach exceeds your grasp; if love so ignites your words they go down in flames and nothing is left but their scald. Or if, with the reticence of a surgeon’s hands, your words suture only the places where blood might flow. We know you can never do it properly – once and for all. Passion is never enough; neither is skill. But try…tell us what the world has been to you in the dark places and in the light. Don’t tell us what to believe, what to fear…Language alone protects us from the scariness of things with no names. Language alone is meditation.

Toni Morrison, The Nobel Lecture in Literature, 1993

It’s day five post-chemo. Eva’s body has reacted as if she has been taken over by some sort of super virus. She moves slowly and carefully. If she moves too quickly, she becomes ‘woozy’ – the word she keeps using to describe the sensation of fullness in her head, dizziness, vertigo, heaviness. Her appetite has slowed to a crawl, but she keeps putting fuel in to her body. Her taste is changing: wine and coffee and chocolate are not what they were a week ago. Her hip bones are starting to ache, probably from the injection she had the day after the chemotherapy, the turbo-boost to the bone marrow in her long bones and hips to start pumping out white blood cells. And she is tired. She did very little but sleep for four days. She would come in to the living room at times to interact with the children. The last three evenings (including tonight) she has felt somewhat better; but the last two mornings were disappointing. This morning she lay on Mia’s bed as Luca did bum shuffles/commando crawls/rolls around the floor. I asked her how she was and she said that she feels like her life has been taken away from her at the moment. She feels at times like she has lost control; even looking after an eight month-old baby feels overwhelming on these days.

We decided to get out the house. This was the first time she had left the house since she had chemotherapy five days ago. She was tentative despite wanting to, but I think my suggesting it gave her the last bit of impetus she needed. We set off on the less than ten minute walk to the village. We were slower than usual. Fortunately it was cooler today than it has been so we didn’t have heat and humidity to contend with as well.

Once she was moving she started to feel a bit better. We went to one of our favourite cafes, where the owner came out and gave Eva a long hug. Just before we left she came back and pressed something into Eva’s hand with her phone number on it. Like so many other incredible people, she insisted that we ask for help when we need it. She said there were some vouchers for the cafe in the bag (which made me well up). We walked away, buoyed by the visible signs of care and affection that people are demonstrating towards Eva (and by extension, our family), which made me cry properly. I haven’t cried for about a week, so that’s all good.

We always head to the sea at difficult times. Eva and I virtually ran away from our childhoods and teenage years to the sea, where we lived and worked on a ship for two years. The sea was a haven and a learning ground. There’s nothing like having nothing but thousands of miles of ocean around you to force you to orientate yourself in the world. Today, we went back to the sea again. Just up to our ankles at our local beach, but there is a timelessness and changelessness to the sea which grounds us.

Eva said a couple of times that there have been periods the last days where she has felt like she is ‘fading out’ of life, or becoming irrelevant in some way. I interpreted this as an expression, firstly, of the extreme exhaustion and discomfort she is experiencing, with understandable effects on her mood. However, there is also a clear change in roles for both of us. Eva has gone from being a full-time, stay-at-home mum looking after a baby and a pre-schooler, who may have considered going back to work as a teacher in a year or two. I have gone from being a doctor working full-time for a busy public mental health service, to becoming a full-time, stay-at-home dad and carer. Eva has gone from being a super-organised, energetic and involved mother, to some days, being barely able to lift her children, or spend any extended amount of time with them. The vocation which she has chosen to currently invest her life in full-time has suddenly become unavailable to her.

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The story of our family is changing day-by-day. The next twelve months looked quite clear to us. There were some milestones and markers which were approaching. We spent time imagining what life would be like with one child at school, and how she would change and develop. These events are still going to happen, but the angle from which we see them has changed considerably. Part of me had realised clearly the last months that life could change in the blink of an eye. I did not think I was immortal or indispensable to the Universe; sometimes when driving I would be acutely aware of how quickly my life could end if a lorry decided to swerve at the moment, or I lost control of the car. Why did I have these thoughts? Perhaps some sort of existential anxiety now that I had two children and a spouse who were financially dependent on me. I’m sure they like some other things about me too, but money’s pretty concrete sometimes.

And now our family story, the narrative of our life, has hit a hump-day. A hump year? We are not unique in this, and I don’t want to portray our situation as something out of the ordinary. Many families experience diagnoses of major illness, and experience much worse tragedies than we have. But this is our story. Can we create it, still? Has the pen been taken from our hands so that we can’t determine much but attending appointments and organising care for our kids when we have to be at a hospital?

‘Narrative is radical’, says Toni Morrison, ‘creating us at the very moment it is being created.’ We know we are being inexorably changed by this chain of events. It’s a change that has been forced upon us, and mostly upon Eva, and not something we would have asked for. But it is something that we can still be creative with. Our fears for how this could affect our children are tempered by the hopes of what this will teach them, especially Mia. Will she learn to be kind to herself when she is unwell or struggling or low in mood? Will she learn to be kind and caring towards others when they are scared and unwell? Will she look back on her childhood (maybe via her father’s verbose witterings) and be thankful that her parents demonstrated one way of dealing with a major adverse life event? Will she learn from a mother whose confidence and self-worth and value goes much deeper than her physical form, whose beauty comes from forbearance and patience and having suffered? Will she learn that she is safe; safe as a person, in her own being, and within her family? Will she learn that when bad things happen, others are there to help and to hold and to encourage? Will she learn that in the bigger picture of the world’s suffering, her kindness and courage is enough to make a difference to individuals’ lives? Maybe we can influence this story, still.

We are early on in this blip, or new trajectory rather, in our narrative. We’re feeling our way amidst the psychological and physical effects of breast cancer and its treatment. We are trying to manage the effect it has on our own mental health, and trying to sensibly deal with the difficult feelings and emotions and sensations that it gives rise to. We are learning what different days are like and what we can expect of ourselves, of our spouse, and of our children, when we all are in various degrees of tiredness and stress (and joy and happiness and relaxation and fun).

‘The scariness of things with no name’ is our monster we are struggling to contain. The unknown. The unforeseeable. And this is demanding vulnerability of ourselves. We need others love and support. We need psychological transparency (when my words here become thought disordered and bizarre, I know some fabulous colleagues who can stitch me up with some dopamine antagonists) with ourselves and one another. This vulnerability is fearful, and goes against the self-protection which we are primed to hide behind when life becomes too much. And this blog is some manifestation of that for me. I don’t want to psychoanalyse too much why I am displaying this vulnerability for others to see; there are some pretty juicy interpretations out there that we could apply. But I think it originates from some fundamental belief in the necessity of human connection, and a strong hope that people are kinder and more thoughtful and more loving than we would sometimes fear to believe. And my experience of this over the last almost three weeks is that they are. People have reflected back to me that the vulnerability displayed here has been helpful for them in their own experience of life.

This is us telling others what the world has been to us in the dark places and in the light. May our common vulnerability be a force for healing and hope.

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Tonight’s sunset

The Discipline of Hope

I’ve got a PhD in Catastrophisation and Anxiety (with distinction). Prior to Eva being diagnosed with breast cancer, I had already – years ago – envisioned Eva dying; me dying and leaving Eva with not-yet-conceived kids; our not-yet-conceived kids dying; Eva dying and leaving me with not-yet-conceived kids; my best mate dying; me losing my ability to work and support my not-yet-conceived kids, etc etc. I could easily go on.

When we received Eva’s diagnosis, my well-primed anxiety response took flight. The morning after (I think) I was with both kids by myself as Eva tried to sleep again after a restless night. I remember feeding Luca while Mia played on the floor. And I remember trying to sing and smile at Luca whilst I fought what was essentially the beginning of a panic attack. I felt this image taking over my vision: trying to raise two kids alone, who missed their mother; feeling ill-equipped and scared; trying to make up all the parenting that they would miss in Eva’s absence.

But we don’t get to fall apart. This is Eva’s battle, primarily. I’m just the cavalry, bringing up the rear. It’s my job to support her and protect the most vulnerable and precious members of our family. It’s not within the traditional role of the western male (or most cultures’ concept of masculinity) to admit to being scared shitless and scared of not coping. But I guess we’ve all had it to one degree or another. How conscious or not we are of it, and how we deal with it, is key.

Hope needs to become a discipline these days. We cannot control our circumstances but there is some room to control our reactions to them. I could expend energy imagining planning a funeral. Or I could invest energy in imagining a fit, strong Eva in twelve months’ time, back to swimming with the mum’s squad, running around with the kids, getting ready to go on well-deserved holiday. And which image will give rise to the greater feeling of anxiety in me – or us, as this battle is as acute for Eva? Unpleasant feelings are still there – uncertainty, worry, tension, grief. Hopefully by learning to sit and acknowledge those feelings, I can then proactively choose to imagine a beautiful future, rather than be riddled with the anxiety of the potentially disastrous one.

This Emily Dickenson poem was in my head this week; it is oft quoted by one of dear friends, Megan, and true to form, a letter arrived from her for Eva a couple of days after:

Hope is the thing with feathers 

That perches in the soul 

And sings the tune without the words 

And never stops at all.

Mama has a klumpen in her brust.

‘Mia, remember I told you about having the lump removed from my knee when I was younger?’, said Eva, in German.

Mia sat on Eva’s knee, half paying attention.

‘Yes.’

‘And remember that I told you that I have been having lots of pictures taken of the lump (klumpen) in my breast (brust) over the last week?’

‘Yes.’

‘Well, the doctors said that I have to get it taken out. I’m going to go to hospital and they’ll make a cut in my breast whilst I’m asleep.’

‘Can we visit you in hospital?’, she said excitedly. ‘Like we did when you had the sore tummy before?’ I cast my mind back to when Eva had the ruptured ectopic pregnancy last year. Mia had been so happy to get dressed in special clothes and march up to the ward to proudly present Eva with a bunch of flowers.

‘Of course you can.’

We were out on the deck. She jumped off Eva’s lap and came over to me. She leaned in to me and whispered loudly, ‘we can get Mama some of those chocolates, the little round ones…what are they called?’

‘Ferrero rocher?’, I asked.

‘Yes! And we can get her lillies, because they’re her favourite flowers.’

Her eyes were sparkling and she looked across at Eva.

‘Did you hear what I said, Mama?’

She looked back to me. ‘I want to tell her!’

‘Let’s keep it a surprise,’ I suggested. ‘Maybe you can make her a card, too?

She nodded intently, her eyes wide.

‘So there are three things that are going to happen to Mama, Mia. First the doctors are going to put her to sleep and remove the lump from her breast.’

‘Will she have a big cut? Like Lottie’s dad had in his leg when he hurt it?’

‘Yes, it will be a big cut.’ I hesitated, and considered whether it would be helpful to tell her that Eva would have her whole breast removed.

‘He had a cut right up to here, didn’t he?,’ she asked, motioning to the top of her hip.

‘Well, it wasn’t quite that big. The next thing that’s going to happen is that the doctors are going to give her super strong medicine. It will go all round her body and make sure that all the bits of klumpen are gone.’ I don’t know why I was inserting German words. ‘Mama will be really tired when she has that medicine and will need lots of rest.’

She nodded.

‘After that, they are going to put magic rays on to Mama’s chest, also to help get rid of the klumpen.’ I wiggled my fingers towards Mia’s chest.

‘Do you understand, Mia?’

‘Yes. But I want to tell her.’

‘Let’s keep it a surprise, okay? The main thing to remember Mia, is that I am going to be looking after you and Luca, and Mama. Even when Mama is tired, I’ll be looking after you. And you know what? There are going to be so many people looking after our whole family! That’s why Julian and Abbie and James are bringing us food. We are so well looked after, which is amazing.’

I think she had zoned out by then, bedazzled by thoughts of flowers and chocolates and hospital visits.

Phew.

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We had no idea when or how we were going to explain what was happening to Mia. Our gut instinct had been to just let her ask questions as we attended more and more appointments. But Eva became somewhat uneasy about this. For us it felt right to give Mia some kind of idea that something was going to happen. She had not remarked on people dropping off food or the hugs or the hushed conversations and phone calls (which we had tried to keep to a minimum). It felt the right decision in that moment, which I think is how a lot of our words and actions are going to be guided. There is no manual for this. Only the experience of those who have been through it before, and knowing, as much as possible, what is good for our child.

The next day she pulled a cafetiere of fresh coffee on to herself. Good to still have a four year-old around to keep us on our toes. (She’s fine, by the way).

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