Out of the Depths…

DSC_0855

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of those depths.” Elisabeth Kubler-Ross

Elisabeth Kubler-Ross was in many ways the founder of the Hospice movement.  She was the drive behind this movement because she believed that euthanasia stopped people from completing their unfinished business.  She believed that we should heal those who were dying, support them to have a good death and enable their families to grieve properly.  It was revolutionary, and it was necessary.

When I was a jobbing writer, I secured a position at a Hospice – 2 days a week for 6 months and then 1 day a week for another 6 months.  It was an extraordinary time, and for a while I knew a lot of people who were near death.   Well, nearer death than me as it turned out – though of course we can never be certain about that.

My job was to work with patients in day care.  I mostly worked Tuesday and Thursday (although not always) and so I began to build relationships with a lot of people who were either in remission or who were well enough to still be at home but who came to day care to receive treatment, socialise or get out from under the feet of their loved ones.

There were many people over the course of the year that I got to know very well – initially there was some suspicion about who I was as I wandered round with my notebook as well as what I was trying to do but as time went on people spoke to me, told me their stories. Together we wrote poems and books, embroidered words into banners or other things made with love.

A number of people stick out in my memory – slivers of lives I got close enough to touch.

One man, I’ll call him Clive, sat alone by a window and always seemed sad. I chatted to him. In his younger days he’d been a grave digger, and he told of the process of burying a man. It was as if his insider knowledge weighed him down. Clive told me he’d never really had much but when he found he was going to die he gave it all away. I told him that was an amazing thing to do, “I won’t need it where I’m going,” he said. Weeks later he discovered he wasn’t dying at all but Clive was resigned nonetheless and never regretted the loss of all the things that would have made his life easier – like his TV, his record collection and his books.

Patients sat around in armchairs – some making rugs, some doing art, some staring into space. Others chatted to other patients as if they were old friends. The rules of friendship are changed in day care and the connections were often deep and heartfelt.

Volunteers supported the process every day: all vetted to make sure they weren’t morbid or moribund or nefarious in their need to be close to the dying.

Another patient, Claire, was younger than me although we’d had very different lives. She had four kids and was the youngest of five herself. Her cancer had started on her leg as a lump then grew like a banana from her thigh. “Have you ever noticed,” she said, “How they always describe lumps via fruit?” She laughed and then added, “It’ll be the size of a melon, or an orange, or a grape.” I smiled, nodded, “They use sports equipment too…”

“Ah yes, the size of football, a golf ball, a cricket ball. Although that wasn’t the case with my leg. It just grew like an inner-tube, a spur. I knew right away I was doomed.” And she was – all the time she had left she gave to her children, making memory boxes until she died – weakened by the drugs and treatment – of pneumonia, a common cause for those in end of life care.

Another person who sticks out in my mind was John – who looked so well. “People say that! I must have looked shocking before.” John was a lovely man, the sort you’d want as a father or a grandfather. But he was bitter, angry. “I’m the fourth person I know who worked for the Electricity board who have a cancer – is that coincidence? We used to shimmy up those poles, and without any protective clothing at all, get to work. Know the worse thing Mary? They can’t say what my primary cancer is. Know what the problem with that is Mary? I’ll tell you: they can only treat symptoms and not the source. So I’m dying but I can’t say what of, because they don’t know. I’m a man of mystery!”

The other reason John was bitter was that his grandchild was also dying. “I can’t even say take me, Mary, because they already are doing. But I’d give anything to save him.”

Another time he said,  “Mary the problem with children dying of a brain tumour  is that apart from that, there’s absolutely nothing wrong with him. He’s as fit as a fiddle. Apart from that, there’s nothing wrong and he’ll live for a long time.”

He did. John outlived his grandchild, and his pain was so deep and profound and palpable he’d no longer speak to me at all as though my writing it down would make it real. More real. But John stayed ramrod straight and dignified in his stoic acceptance of the terrible fate of his family. He would sit in the mini-chapel, not because he believed but because he was left in peace.

Overall, I was sometime chronicler, some part therapist or listener and some part a weaver of tales.

Even the volunteers spoke to me. “I wanted to be a help.” Dorothy confided one day, “When my boy Alex died I felt I needed to put something back. And I know how profoundly painful grief is and how it never passes completely.”

“I’m sorry to hear that.”  I did not invite any kind of confession but she was quick to share. Her son, a bright able strapping young man went to bed one day and never woke up, dying of an undiagnosed heart condition: sudden adult death syndrome.

“I can’t tell you how I missed him Mary – for a long time we kept the rental on his flat and I’d go in and just feel him. I’d stand in the wardrobe and smell his smell and for those moments it was as if this terrible nightmare had never happened. And then the smell began to fade, and I realised that although it never passes – grief changes. In my dreams Alex lives a parallel life, marries, has children, gets to middle-age. I know he doesn’t but it’s a blessed comfort, and it means that I can live with the space where Alex should be, but isn’t. And coming here I know I can enrich these people’s lives and my own too. It’s more than I expected to feel and I’m grateful for that.”

Dorothy was so dignified and so alive. And practical – an extra pair of uncomplaining hands. She was one of the beautiful people who had suffered, and struggled but she had survived. She had found a path from deep, unremitting pain and was living again.

The Road Less Travelled…

FullSizeRender(5) copy 3

There is more than one way to die – more than one way to erase yourself from the picture. A physical body operates on an animal level and, whoever you are, it must be fed and watered, rested, kept warm and housed.  These are the very basics – as Maslow identified. But the mental side of a human being is a more complex country and although psychologists have made strides in understanding why people behave in the ways they do, not everything is explainable.

We should have seen the signs because they were certainly there, but in truth it was beyond our experience of the world.

Four women and three children lived together in a fine old Victorian House in Manchester.  A family: a rag bag and complex family, but a family nonetheless.  One woman, Jane, who was the birth mother of the children had – just about – held it together before Miriam moved in.  For Miriam it was an instinct thing – she saw the children and knew that she would need to be part of their lives.  She was also Jane’s best friend, and by her own admission, Jane was struggling to manage: manage the children, their personalities, their needs, her needs and the interpersonal mash-up of all their lives together.

Even early on Miriam noticed a peculiar habit Jane had – whatever Miriam said, when she shared her thoughts about the world, or love, or conflict, or whatever, Jane had a tendency to agree.  It was an odd thing but nothing to worry about.  Jane would always say, “I think that too.”

They made it work – sharing the load of the children’s lives – women came and went but Miriam and Jane stayed as the tight-knit core.  I moved in when the youngest child was 11 and the other two 14 and 16.  The house ticked over like any family home with domestic duties and work, TV and late night jaunts to the airport for fancy puddings in a restaurant, the children playing games in their own unique style: canasta, Scrabble, Monopoly, Pictionary.  In its detail, and in spite of its unusual make-up, it was much like any other family.   A daily round of up for school, breakfast, home, supper, TV, bath and bed.  Weekends of long dog walks and swimming and excursions and down time.  The women, determined to make it work held house meetings to establish guidelines that took the pressure off, that helped the whole tick along.  Like any family, it didn’t always run smoothly: but it was well-meaning and there was a lot of love. That got everyone through – just about – unscathed.  And Jane was a very good breadwinner: she was a woman who could make things happen.  She could convince a funder to back her, she could generate work wherever she went.  Jane had the capacity to give people what they needed, say all the right things – she was very, very clever.

At 11, each child was given the opportunity to go away to school – although the world has changed now, at that time as ‘birth-right’ Quakers they were able to go to a Quaker boarding schools on assisted places.  All three children, for very different reasons leapt at the chance… the boy because it would give him a place to be himself away from the unresolved challenges he faced with his sister and a house full of women.  The second, a girl, because it met every single expectation that she’d imagined by reading The Chalet School books.  When the third child went – she was happy to follow in the footsteps of her sister.

Something happened to Jane when the last of her children went to boarding school.  Freed from their immediate daily needs, she began to focus in on herself.  She began to try to understand herself, peeling away layer after layer in the hope of gaining insight into why she struggled – she expressed the view that she could not be herself because she did not know who she was.  Jane was relentless in her pursuit of this self.  She went to endless therapeutic sessions, digging ever deeper into a bottomless place.  But still she remained a kind of psychic chameleon – able to be whatever anyone needed from her. It wasn’t until we compared notes that we realised that the Jane we got personally was not exactly the same Jane as the others – that the Jane we each got was our own version.  But we also knew that this was true for everyone: I knew we played a certain role with different people, sometimes nuanced, but often a version of our inner truth.  But with Jane it was different. She was a woman who had a honing device on what you needed as person and she gave you that, focused on you and not herself.  Only much later did we ask the questions, “Who is Jane then?  Which is the real one?”

Some days Jane was in a bad way.  She told of walking around with a razor blade in her shoe, ‘just in case’?  Just in case of what we asked?  “Just in case I need to escape,” she’d say, “slice out the real me through my veins.”  Other times, Jane stayed in her room for hours, sneaking out in the dark to put up signs.  One day, on the wall she’d drawn a picture of a woman with an umbrella announcing that her skin was thin and we’d need protection from her.

We held crisis meetings – asking Jane to come along.  Sometimes she did, sometimes she didn’t.  We spoke to doctors, and professionals where we could – particularly Miriam who drove hard towards resolving the situation because she loved her friend, we all did.  We didn’t know what to do for Jane, and we didn’t know what to do for us. Miriam tried to bring it to a head – none of us could go on like this, least of all Jane.  I remember a difficult incident where Miriam asked Jane to disagree with her, just once.  It got louder and more strained.  Jane could not.  She couldn’t.

Finally after weeks of seeking help a doctor came to the house.  He sat with the four of us (Miriam, myself, Jane and the fourth woman, N.)  He was very sympathetic to the situation we were in.  He said that Jane was in permanent flashback and we were all players in her drama.  That we were not who we were, we were who she needed us to be.  Jane sat in the room and nodded all the way through agreeing.  As she would. We would all need to be patient, to hold  it all together for Jane and perhaps, he said, and in return she might think about not doing any more therapy for a while?

The house was as quiet as a tomb once he’d gone.  We felt listened to – heard.  We felt like someone outside of the house had seen the strange slightly surreal world we were living in.  There was no point scoring, and we were not congratulatory.  We all wanted the best for Jane.  And we wanted the best for us, and the children. The way things stood, this was not a house they could return to in the summer.

The next day, the doctor rang.  In a full about turn, he said we were not supporting Jane enough.  That she was struggling, and we were not there for her.

We were always there for her.

Her therapist had rung the doctor.  Who knew what the therapist and the patient shared?  But both had lost sight of the bigger picture. Jane had become unhinged.

The day after that, early in the morning – Jane was outside packing her belongings into the car.

Miriam threw open the window, “What the fuck do you think you’re doing?” she yelled, furious.  It was clear what Jane was doing.  She was leaving.  She was leaving and she wasn’t coming back.  As she reversed from the drive, I cried.  Not for the loss of Jane but for the anger, the disappointment, the ruined friendship, the breaking up of our home, the frustration at the time we’d put in, the disloyalty and the irrationality.  We loved her.  We’d loved her for years and years and years but she did not see us or feel it.  Jane’s only route for survival was to run from us and to the self she had become that did not include us.

Some time later – and I am missing out many months of to-ing and fro-ing and negotiations about visiting children and looking after the house, many months of painful meetings and exchanges, many months of trauma, and pain for us all, many months of challenge – we received a letter.  It told us how Jane was gone, that she had splintered, and that what remained was a tribe of other personalities one of whom, a dominant one, was able to speak for them all.  Jane explained the purpose of each of the tribe, their roles.  She told us what she would like now to be called.

The Jane we’d known was gone.  She was gone physically but also she had erased that self from the earth. We saw the physical person occasionally after that, but hardly at all.  Then she disappeared.

We were not to be part of Jane’s future nor she of ours.

We are still a family – the girls and us, 20 years on.