The alternative orthodoxy?

new normal

During the summer I was invited to take part in an event, a workshop… I’m not really quite sure what to call it. It’s described as a day to explore how a group of people can support each other as we walk the same path together. How are we connected? Well, we’ve all shared some sort of spiritual crisis that has caused us to look for support, and that’s what we have in common.

I was invited some months ago and I felt that given how isolating and lonely my ‘journey’ has been that this was something I wanted to explore. As I drive to the destination for the day I reflect on the years that have led to this. This ‘path’, although I hesitate to use words like journey and path, the analogy for something that might imply I had some choice in taking this ‘diversion’. The day after diagnosis back in February 2007 I’d fallen into a nightmare.

“I found out that a number of people refer to breast cancer as a journey. Well, yesterday certainly didn’t feel like that, it felt like a nightmare, but the sort of nightmare that would end eventually and I would emerge blinking and things would be ‘normal’ again. But I don’t think there will be normal again.”

I think, back then, that I will rejoin the main road, that this is a diversion… and I suppose I almost do, at times now, have a sense of being back on the main road. The essence of life I wrote about earlier in the summer as I finally – after four years – have a summer – greedy, wanting to ‘snatch’ it, keep it, knowing that it may be temporary. But to enjoy it. Now.

The evening before the event I talk to Ronnie and I wonder if I really want to go. I mean do I want to continue to go  to things that I would only have the opportunity to do because of breast cancer? Or do I want to leave it behind?

So, I arrive in a room of strangers. I collect my name badge and get a cup of tea. I am greeted by the people who met me back in 2007, they are the only two people I know. They say I look marvellous. These things are not said lightly. They saw me in my first year post-diagnosis, weeping with fear, at the possiblity of dying, of the loss I felt, just two surgeries done and facing more treatment decisions than I ever knew I’d find the ‘right’ answers for. But time has changed me and now I am feeling more confident. Now, even the fact that I can do this on my own… I am more like the person I was ‘before’. She is here today.

The room is quietened by the gentle sounds of a Tibetan singing bowl, it is miraculous that this sound can calm down a whole room, and we are seated around a small table containing a candle and flowers. I take the opportunity to glance around, there are 36 people in the room, slightly more men than women, mostly older than me.

The first thing we then do is to dance. We are asked to stand, push our chairs back and then hold hands. I am inwardly groaning. I mean, I don’t mind holding hands with people, but these are complete strangers and it just feels a bit soon for me. We are taught a very simple Greek dance that fishermen and their families do when they return from sea, moving around in a large circle. This means that we get to look at everyone as the circle moves, and I am getting some distinctly round-eyed eager loving looks from some of the group. I am distinctly uncomfortable.

Then we are seated again and we are asked to think about why we are here, what we have come for, what we hoped to find. We don’t have to say anything at this point, just think about the questions.

We then have the first exercise explained where we are asked to write down five things we want from this grouping. Are we all clear?

‘Er, well no, actually,’ I hear myself speaking in the room of strangers. ‘I’ve come here with a very open mind expecting to hear about something I might want to be part of, but not something I need to define.’ The woman next to me says I have articulated exactly what she is thinking. That we are all unsure about exactly what ‘it’ is, or might be. Apparently this vague-ness is OK anyway and I can just write five things. I am reassured that this is just about gathering ideas at this stage.

The pen hovers over my card.

‘Groups need leaders.’ I write. And I think to myself, because this one hasn’t.

‘Financially accessible.’

‘Recognise fear is universal.’

‘Sometimes I want to be alone. Sometimes I want to be with others.’

At this point, I think I am probably in the ‘wanting to be alone’ category. Heck, but I’m sitting in a room of strangers. What happened? Shall I just leave and stop this day now?

We then work in pairs to discuss what we have written, and then in smaller groups, discussing what we have written. In the first group a woman says that my statement about being ‘financially accessible’ is irrelevant. Really? Well she obviously hasn’t been treated for breast cancer and not been able to work for years and that found that  professional emotional support is expensive. We eventually arrive at a final list of five things that we feel summarises our ideas. These are written up on flipchart paper and stuck on the wall. And then we have ‘open discussion’. It’s all rather vague.

Lunch happens and in the discussions we have afterwards I can’t not speak to the group.

I say my personal experience of spiritual crisis was extremely lonely and isolating. The best support I found, other than Ronnie, whether it was emotional support, counselling or medical professionals who also work in the emotional realm, was from people who were all paid to help me.

I say that I doubt that we could find that sort of support in this group. I am cynical. Yes, I say ‘cynical’. Someone in the group tells me quite sternly that I need to be more trusting and that I need to ‘leave my cynicism at the door’. Ah, I see. So ‘cynicism’ is bad, no doubt they would also tell me that anger is bad as well. I’d say so but I’m too, well actually, angry right now.

That makes my irreverence querl inside me. I can feel it burning me. And I think, these smug, white, middle-class do-gooders. What do they know? From the people I’ve talked to today no-one I find has had a life-threatening illness. They’ve experienced burn-out, stress; sure, difficult life challenges, I’m not trying to compete for the ‘worst’ crisis. But I’m impatient. I don’t have time to sit round and nod and smile nicely. I want us to get on with eradicating breast cancer. I don’t want my friends to die of breast cancer. This won’t save them.

Now this day has started to feel like something that my friend Rachel would describe as ‘Dandelion-esque’. Dandelion is a character she invented who epitomises the sort of New Age persona found all over the internet who think that breast cancer patients now have to search for their ‘new normal’, where a ‘world of opportunities will open up if we embrace it’. Ah. You get it. All said in very positive tones and much nodding. I hate it.

The day, thankfully, ends very soon and I am given another card, this time with a bright star sticker on it, and asked to write down what I can bring to this group. I’m just seething as I see others scribbling away. What can they possibly be writing? What can there possibly be here? I fold the card in half and shove it into my trouser pocket. I cannot wait to be away from here.

The event ends. As I sit in my seat and wait for a suitable escape route where I can avoid all eye contact with anyone, a Dandelion-esque woman approaches me. ‘Do you feel more trusting now?’ she asks. ‘What?’ I growl. ‘What is it with you people, you think cynicism is a dirty word?’ I have separated myself from them. I think of them as ‘you people’. ‘A healthy dose of cynicism has got me a long way,’ I say. She nods and smiles and backs away. I wish Rachel, my opinionated mate had been here today to witness this. We would have sniggered and cackled irreverently. Heck, we probably wouldn’t have come in the first place!

There is nothing for me in this place. Is this the ‘alternative’ orthodoxy? The place where we’re encouraged to think that if bad things happen then somehow we needed to learn the lesson? What lesson did I need to learn from breast cancer? I don’t feel I belong in these places where tears are OK but anger isn’t. Where boxes of tissues are always discretely placed and crying is almost expected. Where people are thanked for sharing, with much nodding and soothing noises of mmmmm but no discussion. These events always take place miles away in fairly remote venues you need a car to get to. Where every ‘alternative’ therapy is considered good, there is no filter or selection process; and I might as well be buying magic potions and snake oil.

This place is not an alternative to anger and the desire for change. For real questions to be asked.

The real alternative is saying that science and research could mean cures and prevention. That’s what I mean. I drive away, swearing I’ll look out more vigilantly for the alternative orthodoxy, next time it turns up simpering in my in-box.

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14 thoughts on “The alternative orthodoxy?

  1. Ah yes Dandelion! I’ve missed her. Quite right that if I’d been with you, we would have skipped the “alternative orthodoxy” industry event entirely and spent the day at the fake seaside town gorging ourselves on fish and chips and then a visit to that lovely icecream shop. Now that’s my idea of “normal.”

    • ‘Dandelion’ replies – ‘Mmmmmm Rach, I hear you, and my heart resonates deeply with empathy for the pain that is causing you to be so cynical. So, dear, have you tried a Bach Flower Rescue remedy, or maybe listening to your favourite uplifting new age chanting CD? Do try and stay positive as we move forward, because you know what anger like your’s and Sarah’s has caused in both of you in the past, don’t you?’

      • Ah yes Rach… fish and chips and ice cream would have been a much better ‘alternative’! Maybe Dandelion needs to be brought out soon for some more wise words!

  2. Egads, that sounds absolutely awful. I’m impressed that you stuck it out all day instead of chucking it. I guess everyone has the right to deal with the aftermath of cancer in their own way, but that seems whacked to me.

    • Responding as myself this time.
      Yes, Nancy, when Sarah got back from the day she writes about she was a mixture of enraged at how the day had gone and, in fact, disgusted with herself for sticking it out. When you’re living a ‘no wasted days’ kind of life, it’s hard when people you’ve previously trusted go and waste one on you. Even now, just a couple of months later, she has much more of a ‘scorch the gateposts as you leave’ policy, when she feels her time is being wasted!

    • Thanks for reading Nancy. I assumed most people would be there in the aftermath of cancer… but in fact I discovered that I was actually in the minority (as a cancer patient) and others had different reasons for being there. I feel the sense of time much more keenly time… the ‘no wasted days’ that Ronnie mentions. Learn a lesson in trusting my instinct here that’s for sure!

  3. I’ve been there, done that. As one who is learning more and more that most rules are mere guidelines, not commands, I hate to be forced to answer questions of the nature you describe. I would exit that alternative jabberwocky session as soon as the opportunity arose. Thanks for reminding me why I don’t go to support groups anymore, except as an occasional speaker.
    Jan XX

    • Thanks for reminding us about the ‘alternative jabberwocky’ Jan – my favourite poem ever.’Beware the Jabberwock, my son! The jaws that bite the claws that catch! Beware the Jubjub bird and shun the frumious Bandersnatch!’ … Then later on, the Jabberwock ‘burbled as it came’ – just like the alternative orthodoxy!

  4. Fantastic insight and many parallels with my experience of dealing with long term ill health and how alone,angry and frustrated I often feel.
    The loneliness causes me to chase and hunt for support mostly without fulfillment.

    Its this desperation that forces some to cling to CBT techniques of positivity and constant calm
    I don’t want to hang out with other “sick” people and be forced to consider myself lucky as a real living (almost) breathing (definitiely) human being I get ANGRY. Sometimes for no good reason. CYNICAL because I have been beaten to the ground so many times.
    But best of all HAPPY when those you think love you stop in their thoughts and reach out to touch you.(even those closest forget those small gestures which are so precious)

    I am sorry for barging in to your blog with my 2p worth but I felt I had to comment as your piece resonated so much, Best wishes and salutations.
    Apathy Smothers Revolution ;)

    • Greg, thanks for your comment. Not barging at all. Bit more ANGER would be just what we need – a great motivator for change, in my opinion. It’s great it resonated with you. I like that. Helps me to realise that my words touch others. So thank you.
      Sending you all the best too. Sarah

  5. Sarah, I loved, loved this post! What comes to my mind here is the word patronizing. That event was a sham, a pretense. Maybe they had good intentions, but then again…

    And don’t you hate it when everything is so planned – so defined, so rigid? The whole purpose is defeated right from the start.

    I guess I’m too cynical too. ha.

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