First things first: some good news from the PET scan yesterday – Eva has no bony mets. We didn’t really expect any as the CT chest/abdo/pelvis two weeks ago showed no other soft tissue/organ involvement…but then again, three weeks ago we didn’t really expect that she had cancer. (Quick recap if you’re just joining: my wife was diagnosed with invasive carcinoma of the breast, with multiple tumours, and metastatic spread to a local (axillary) lymph node at the end of November 2016. She started chemo 8 days ago, and will have that every two weeks for 16 weeks, then a mastectomy, and then radiotherapy. She has no known family history of cancer (although her dad buggered off when she was 4 so we don’t really know his side of the family, leaving her nothing but a mafioso stiletto knife from Calabria, Italy, where he was from, and a bunch of shitty genes, apparently). She is 36. We have an 8 month-old baby, and a daughter starting school in January. It’s all very surreal, still. A surreal kick in the crotch.)
As I sat in the waiting room whilst Eva was having the PET scan, I had a recurrence of the horrendous nausea and tightness in my abdomen which I had during that entire first week or so of her diagnosis. It was a completely primal, animalistic response; it was a hot day outside and I was wearing a singlet, but despite the icy air conditioning I could feel the sweat dripping down my inner arms, and I could smell it. It’s not like the sweat of exertion or being a bit pongy at the end of the day: it was fear. Something I’d only read about before.
But all good, and enough of my body odour.
Secondly, she has had a couple of better days the last two days since the effects of chemo laid her low. She is still not herself; more tired than usual, intermittently nauseous, deep bony pain, dry mouth, rash, indigestion, intermittent appetite, etc etc. But she’s been up and out and about, and even went for a swim today (which has now put her back to bed at 2pm).
Tomorrow a friend is going to come and cut her hair short in preparation for hair loss after round two of chemo next week. Photos to follow.
We have received hundreds of messages the last three weeks, which have blown us away with their love and support and well-wishing and expressions of care. I received one from a friend a couple of days ago who experienced an incredibly painful event last year. Her mother, with whom she is incredibly close, had a major stroke just before my friend was due to get married. Here is a small excerpt from her message (it was epic; I’m submitting it for the Booker Prize next year). She wrote:
I was discussing some of the crap that people were saying to me about Mum with a trusted mentor. She reflected that when people say insensitive things like this, more often than not they do not do it because they want to cause offense, they do it because they are either uncomfortable or ignorant. This comment was a touchstone for me. Because people said some really fucking insensitive things to me (from my perspective). And upon reflection I think it’s because people are very uncomfortable with suffering and just sitting and ‘being with’ someone in that moment of pain is often too much, and naff blaze catchphrases are easier to blurt out than just sitting in silence with the pain.
“God doesn’t give you anything you can’t handle” – well, this is a doozy isn’t it? I don’t know how your faith is coping with this but mine has been essentially totally derailed by my Mum’s stroke. I cannot reconcile an all-loving God with a God who allows this to happen (which, I acknowledge, seems incredibly selfish because before Mum’s stroke I knew unfathomably terrible things were happening in the world but somehow my faith was okay with that as long as it wasn’t happening to me). I have found there is nothing I can say to people who say this. So I nod dutifully and ponder whether God thought everyone who died at the concentration camps in WWII or in Syria or … (insert every massive tragedy known to man) could handle it. Which I know seems petty. So that’s probably just my issue, but I thought it was worth flagging that this comment was a big trigger for me. As was people offering to pray for me – a double-edged sword because I appreciated the gesture but felt like saying “do you want to choose another God to pray to? Because the guy you’re asking to heal my Mum was the same dude who let it happen in the first place, so surely that’s a conflict of interest…”
“Everything happens for a reason” – well, if you can give me a good reason why my mother who is the kindest and most generous person I know and who tirelessly gave of herself to others deserved to have her independence and identity taken away from her then I will give you a million dollars. The same with Eva’s cancer. There may be lessons that you learn through this process that are very valuable. That is brilliant. But do not feel that you need to find reason in this. There is nothing she, or any of you have done, for her to ‘need’ to have cancer. I believe this, like my Mum’s stroke, is just a random body glitch that has huge ramifications. Having said that, should you find a deeper meaning to it all then please share it with me, as I feel I am often stuck in anger and the thought of finding meaning to this pain sounds like a great alternative.
“Well, at least… (insert any comparison here, i.e ‘you have two healthy children’, ‘you have each other’, ‘Eva is still young’)” – I have never found comparisons to other situations helpful as I feel it does not acknowledge the suffering of the individual. But, again, some people tend to believe this is ‘helpful’ to remind us that people are worse off. I just ended up repeating their phrase back to them in the form of “that is a fact that…(insert their random observation here)” and tried to move on, cover my disdain, and remind myself they are just ignorant and uncomfortable.
Some people just get it…surround yourself with them. These people will identify themselves clearly. Ask and accept help from them whenever you can. If possible, fight the urge to close your world in and do this on your own (because it is damn tempting but in the long run will be exponentially more challenging). Because the fact is that over the coming weeks and months your world will close in as you focus on getting Eva better and healing your family (because I believe illness happens to a family, not just to the one person with the diagnosis). The trick is carefully selecting those who you allow in and when you allow them in let them assist with the healing.’
Obviously our experiences are different in many ways, but the main point I think that stood out to me, is how uncomfortable most people are (including myself at times) at sitting with other people’s pain. Personally, I have not received too many outrageous comments about Eva’s cancer, so I am not on some vendetta against awkward communication about a sad situation. But I can empathise with everything my friend wrote, as I have experienced all those different examples which she delineated. (Bollocks, I just looked at my message to her when she told me about her mother….not cool. Sorry, L.)
But I am more interested as to this: WHY are we uncomfortable with others’ pain? And what is the best way to respond to it?
In a way, we can superficially acknowledge why we do not like pain which happens to us as individuals: it’s painful (duh), and pain is associated with uncomfortable emotions (fear, anxiety, dread, anger, grief, etc), which are difficult to tolerate. Our previous life experience, and certain parts of our brain, are primed to avoid prolonged feelings of discomfort. So, what happens is:
- We experience a situation which is considered painful (within our social/moral/cultural/religious, etc, norms)
- We experience an emotional response to that pain (a combination of fear, anxiety, stress response, etc)
- We choose avoidant behaviours to distract ourselves from those feelings, and/or we try to escape the negative stimulus
- If we achieve escape from those uncomfortable feelings (through denial, alcohol, other drugs, food, exercise, surfing, antisocial behaviour, or a thousand other things), we will often continue doing that for the (short-term) relief it brings us. (Or, if you’re the Dalai Lama, you practice non-attachment and acceptance and self-compassion for the original painful situation. Which is, I think, probably very useful, but that is another topic…)
So what is the difference when something painful happens to someone else? Why do we find it difficult to engage with their experience of pain?
I think there are two major complicating factors. The first is empathy; we experience some sort of similar or reflected feeling of anxiety or fear or dread as the other person tells us about their pain. We unconsciously and automatically scan our own cerebral hard drives for times when we have had some bad news, or experienced a loss, or been disappointed, etc etc. I think (unless one scores high on a psychopathy scale or the autistic spectrum and either lacks empathy and remorse or the ability to accurately identify emotional responses and social cues, respectively) we all are able to relate to that basic and fundamental concept of humanity and human-ness in the person in front of us. The shit in us honours the shit in them (Namaste shitaste).
But why can, and when does, empathy become problematic? Again, I think there are two reasons: one is that we can over-identify with another’s pain thus becoming more involved in our own emotional response due to being ‘triggered’ by memories of our own experiences of painful stimuli in the past, and their associated unpleasant feelings; and secondly, and related, is that we can misinterpret our OWN feelings (past and present) as being synonymous with what the other person is experiencing. So either, I am so overwhelmed with what I am experiencing that I cannot disengage from that and be there for you; or, I understand/I know what you mean/tell me about it/I know what you’re feeling, and your experience of what you’re going through is exactly what I/Joe/Sheila has had.
The second thing that I think is different when we are exposed to someone else’s pain is that we are not able to control it, or the other person’s response to it, and it therefore becomes difficult to mediate our own response too. How often have you spoken to someone about something ‘painful’ that has happened to them, and you have felt like you are walking on egg shells until they crack a joke or make light of something, and you can relax? Again, our empathy ‘triggers’ us from our own previous painful experiences; but if the other person’s emotional reaction to and perception of the event are different from ours, there is some cognitive dissonance (internal feelings of conflict between what we would like to do or feel, and the cost of doing or feeling that). Someone displaying humour towards their painful situation or, to a lesser extent, being dismissive of it, goes some way to dissipating the dissonance between us wanting to be with someone in their pain (com-passion – to suffer with), and us combating the uncomfortable feelings that arise in ourselves due to our empathy and own, past experience of pain. When someone reacts in a way which does not display confusion or ambiguity or fear or anxiety towards their pain, it provides some sense of relief to the observer and vicarious fellow sufferer.
So is there an issue with that? I think that there potentially is. If we become concerned with not allowing our own pain or feelings of discomfort to negatively affect people around us, we are at risk of not addressing the pain. In our situation, it has been important to acknowledge the fear and anxiety and dread, and I have ended up doing it in this very public forum. There have been costs to that, but the big benefit is that people have reacted to us with openness and genuineness and vulnerability. This has made it easier for us, in turn, to be ourselves: not to just put on a brave face and ‘she’ll be alright, mate’ our way into the coming months whilst we die inside.
Being a doctor has put me in the interesting position of being exposed to a lot of people’s pain, but having to exert clear boundaries so that my decision-making is not impaired by being too upset and enmeshed with human suffering that I have seen. As I moved into psychiatry from emergency medicine, empathy became a tool for understanding a patient’s perception of subject emotions and experiences (phenomenology) which allows us to make a diagnosis of a mental illness (or something else) according to clinical guidelines. Empathy is a tool in my job, yet is a fundamental part of being human, and the absence of which results in severe dysfunction (psychopathy, severe narcissism).
I suppose the long and the short of this is, we need to be real with people who are in pain. We need to be brave and accept their experience of pain, not just hark back to our own memories and experience of something similar but ultimately different. We need to not compare their pain with another’s (there is always someone ‘worse off’). And we need to not advise people to find meaning in their pain. There are lots of positive experiences and character-forming that can happen when someone endures a trying and difficult episode in life, as long as they come out of it without too much emotional damage. But identifying a ‘higher meaning’ in someone’s suffering (‘to show God’s glory’, ‘to be a testimony’, ‘to suffer with those who suffer’, ‘to become stronger people’, etc etc) is at least patronising, and at the worst, somewhat psychologically abusive.
Are we strong enough to say, there is no ‘meaning’ in this (apart from shitty genes, in Eva’s situation); there is no master chess player moving you into a check-mate position; there is no divine force which has decreed that you can handle this and states that it will turn you into a better person? Are we brave enough to say, this is just awful, and I want to sit here with you in your awfulness, and laugh when you feel like you can laugh, and cry when it’s miserable, and listen to you, and I’m going to do that from my own human-ness, from my own history of hurting and knowing a little what it is like to be scared and anxious?
Well done if you got this far. Here’s a picture of my son licking the window, and a pelican: