Wednesday, April 08, 2015

Two visits to A and E. Or: what it feels like to be a thing

It’s 4 in the morning and I’m fighting for breath.

My heart is racing, too: 170 beats per minute, the ambulance man tells me, as he responds to my 999.

And they take me in to Edinburgh Royal Infirmary, and I’m taken straight to treatment; and while I then have to wait another eight hours in the A & E for a hospital bed , I feel cared for, and I feel safe.

4.30 am on Thurday March 26th feels like quite a good day to choose to be horribly ill in.

But I can’t help but notice the constant presence of people in the passage way outside my cubicle: patients of all ages just parked wherever there happens to be space.

People all sharing the same look of helpless bewilderment as they wait to be seen.

And I can’t shake off a sense of a service in grave danger of being overwhelmed.

By the first of April I’m back at home and everything seems fine.

Until 4am on Saturday 4th April when I’m awake with the most intense and terrifying chest pain.

Pulse at 150, says the ambulance man, and we’re back on the all too familiar journey.

But something happens in the ambulance: the pain subsides, and the pulse slows down to 80.

A and E is so busy at first the ambulance man can’t even get me checked in.

I’m shivery and frightened, still, and my heart feels so desperately fragile.

“Put her there” a nurse says, and when I open my eyes I find my chair’s been parked in a line of 4, right in the middle of everything, and nurses rushing past us as if we weren’t there.

Police officers everywhere: a palpable sense of aggression in the air.

Eventually a medical student takes me away to a cubicle, and I feel safe there. He inserts a cannula into my arm, and he takes blood, and records an ECG of my heart.

Because he’s a student, he’s immensely painstaking and full of care, and I’m so grateful to him, and then he says, “Come this way and I’ll take you to where you’ll be seen”.

And before I know what’s happening he’s taken me to a chair in the middle of all the commotion and he’s left me there.

Somewhere I’m invisible, and yet in everyone’s way, and not so far away there’s a man with a bloody bandage round his head screaming “it’s an expresso! It’s an expresso! I want my f***ing money back” at the top of his voice, over and over again, and where I am feels like such an unsafe place to be, and a tiny a bit of me wonders, Should I protest?

But I don’t have the strength, I feel so tired and so ill and so shivery and so weak and I’m so painfully aware of the fragility of my irregularly beating heart.

Just beside me there's a small group of medical students, and they're saying "there's a head injury in cubicle 12. Shall we go and check it out?" and they've gone, because although they're just next to me it's as if I wasn't there.

And I curl up inside. There’s a kind of space where it all seems to be happening to  someone else, and it feels safer there. And so I give up on myself. I give myself up to being abandoned.

Looking back, it’s obvious that what happened was that as my pulse slowed and my pain subsided in the ambulance, so I, too, dropped down all the urgent categories until I ended up at the back of the queue and the bottom of the heap.

And I won’t complain about this. It’s what the staff have to do, they have to prioritise, and they do it with expertise and skill.

But I would say of those of us who are medically uninteresting, those of us who aren’t urgent: we are still human beings who suffer.

Suffer thirst and pain and cold and fear and bewilderment and above all, as we are left in helpless in our chairs, suffer from a sense of abandonment.

I was there for over an hour, I think, in that dreadful place.

And then I was led to a trolley in a cubicle and the trolley had a clean sheet on it, and I could lie down. And I felt as if in heaven.

And I was seen, and my chest was x rayed, and decisions were taken.

The most likely explanation was that a chest infection had got worse; and that was where the chest pain was coming from. 

And under the circumstances it was hardly therapeutic to spend over an hour abandoned in a chair.

Later, I was moved out in the centre of the passageway again, but it didn’t feel so bad, because I knew what was happening.

My trolley was parked in front of a place where admission forms were stored, and nurses had to continually lean over me to get them.

Lean over me as if I wasn’t there.

And I said to one, quite gently, “This is terrible”.

“Yes” she agreed sadly. “It’s so bad for everyone”.

Bad for patients, obviously, because there you are, a thing, and you’ve lost your humanity. 

And so bad for staff, too: continually forced to ignore suffering people who are there right in front of their eyes.

Now it’s over, it surprises me a little that I do not feel the slightest bit angry. 

Much more sad: the NHS represents so noble and so beautiful an ideal it so deeply saddens me we should have come to this.

I don’t want to blame anyone. I don’t want administrators to be bullied or front line staff to be bullied or more pressure to be applied. Because none of that will make things better.

Because at the end of the day I can’t help thinking these things are happening because we live in a society that considers it more important to possess and maintain weapons that can kill millions: more important than to cherish and maintain a system of health care that could look after the general good.

Not to mention a social structure that puts enriching those who are already rich above taking care of everyone’s welfare.

It matters very much we overcome our sense of cynical helplessness and do what we can to turn this around.

But more immediately, it would be good to see evidence of a consensus among all professionals concerned that there is a crisis: and a willingness to look and work for long and short term solutions to it.

Meantime I know I’ll get better: I would like everyone who ends up in that place, staff and patients, to be treated better too.

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Tuesday, March 17, 2015

Jekyll and Hyde and the power of the unconscious mind

I did something today I've never done before: I asked for disabled help to get me on the train.

I've been getting horribly breathless on the least exertion, and it's been frightening me.

Te last time this kind of thing happened was when I was entering heart failure; and it tends to be accompanied by the hugest fear.

Because it brings you up short. You cannot take another step. And you wonder: will I die?

It began last week, when I was working with Chris Goode on developing a theatre piece about being trans. It was especially bad going to and from the rehearsal room: but when we were actually working there were no symptoms at all. And it didn't stop me sleeping at night.

Also my heart was beating emphatically but not madly fast. The main difficulty seemed to me the most intense tightening of the muscles of my chest; as if my chest was being gripped by some profound and powerful terror.

Which, come to think about it, it was. Only the terror did not belong to the present, but to the past: to the time when I first dimly understood, through all my denials, that sooner or later I would have to live as a woman.

To the time when I feared for my sanity: and feared for my life.

This morning I had myself checked out by a kind doctor. And my blood pressure us normal, my heart beat is normal, my oxygen levels are normal, there is no sign of any abnormality or infection in my chest....

So these horrible symptoms are actually a tribute to the destructive power of the mind. Probably, left to myself, I would have put up with them; but my wise friend, Sam Rankin of the Equality Network, insisted I ask for assistance.

And I am so glad I did. Because the polite young man who wheeled me from the taxi rank to the train platform saved me so much suffering and distress.

(I cried after making the phone call. But that is a different story....)

And all the way down, whenever I had a spare moment, I reassured myself that the fear all belonged to the past. That I am safe now, and have no need of it in the present....

All the way down to Middlesbrough. Where I wanted to catch my JEKYLL AND HYDE for what I expect may be the very last time.

Middlesbrough theatre must be one of the very worst placed theatres I have ever encountered. Out in the suburbs, apparently in the middle of nowhere, it's very hard to get to and I cannot think of a single reason why it should be there at all.

The staff were friendly and devoted, the audience small, non-demonstrative, but very thoughtful and attentive.

I watched them going out and wondered what on earth they had made of it all.

And then clambered up onto the stage and said goodbye to the set and goodbye to the actors, who are so gifted, who work so hard, and of whom I am so very fond. Goodbye to Nathan Ives-Moiba, so extraordinary as Jekyll and Hyde. Goodbye to Lyle Barke, so touching and devoted as Utterson. Goodbye to Rowena Lennon, so amazing and multi-faceted as all the women in the story. And to Emma Nairne, the company stag manager, who has worked so hard and so devotedly to hold everything together in an incredibly gruelling tour.

And then I went outside and waited for my taxi and reflected on what I'd seen.

And realised I had every reason to be frightened of this play too. Of what it reveals about our capacity to disassociate, to refuse to accept responsibility for what we've done. Of our cruelty. Of the mad masculinity that continues to so destructively rule our world.

Of what it tells me about myself.

And I thought about Jekyll, with Hyde growling and muttering in his subconscious, in his murderous rage... and understood how in an unexpected way he was an image of myself.

Of Jo, struggling with the terror deep in my subconscious mind, which I am struggling to bring up to the surface and embrace and make a beautiful piece of theatre out of and so set free.

And then the taxi came and the driver told me a long story about someone he knows called Jan, who cannot stop herself stealing to feed her vodka habit. She'll steal anything from anybody and walk round the park for hours and hours talking to everything and everyone. To the trees to the ducks to the people she meets.

And she stole two big bottles of vodka today and because it's her birthday they let her keep them and she's at home now. Drinking them. Neat.

And nothing to do, really, except bless the poor woman and hope she finds the oblivion she is craving.

And go to my room and write this piece and then go to Manchester tomorrow. For the last technical rehearsal and the first dress rehearsal of my beautiful ANNA KARENINA at the Royal Exchange.

And sleep happy, knowing there really is nothing to fear and much beauty is waiting for me there.....

Thursday, March 05, 2015

Tribute to Ani: a wise and beautiful woman

It was Ani's funeral today.

Ani was the founder of the Wild Goose Sangha in Edinburgh: a very beautiful community of people following the teachings of Thich Nhat Hanh.

I loved Ani: earthy and mischievous, she had such twinkly eyes and such wisdom to her.

But somehow I couldn't feel sorrow for her death. I had the sense from her that she was ready to go, had indeed been ready and waiting to go for a while, and I found myself feeling happy for her.

Dying is difficult and I felt glad that for her it was over.

And it was lovely to be back in St. Mark's church, where I performed JESUS QUEEN OF HEAVEN. Lovely to see the old familiar faces and take part in a walking meditation again.

In general it was a very beautiful ceremony: a blessing to take part in'

And a blessing to have been part of this wonderful woman's life.

At one stage I would see her once a week and she would tell me episodes of her extraordinary life.
The plan was to make them into a performance piece: but somehow the time or the circumstances never quite came together the way we intended.

One day the form will emerge, and so will these accounts. In the meantime, here is her account of

The nightmare or  My First Lama

I seem to recollect that this nightmare may have began around the time when we had the very strong experience of our company’s team mate’s suicide. That could have sparked it. And it was somewhere around 1956 or 57 shortly before I left Buenos Aires. 

The nightmare came up every now and then and it was all about having to be in a performance and not being able to get to the theatre on time. In several chapters of it, which lasted for some 20 odd years, I found myself so far from the theatre that the anxiety born from the idea that I might not be able to “make it “, woke me up every time.

The scenery changed: I could be too far away, or delayed by heavy traffic, or not realizing the time had gone by. The scenery was different but the essence was the anxiety of “not being able to make it”. NOT BEING THERE. I was not going to where I needed to be because there were obstacles on my path. 

But, somehow, along the years, the circumstances changed and I was each time getting closer to the performance place, to the theatre. At a certain point I had arrived at the theatre but I was muddled up, lost in the corridors on the audience sector, searching for a way into the back stage. At times I got there but the obstacle or impediment for me to be in the performance was that I either did not have the proper dress, or the make up or realizing that I could not remember my lines.

Not knowing the text and feeling guilty for it was probably the strongest feeling that came several times once I was on the right side of the theatre: the performer’s side.

At some point I found myself so close to the stage that I was able to hear the dialogue being delivered there, but it was dark, very dark, so I could not see the actors or anyone else.

Around this time in my life I had recently settled in a Dharma Centre in Barcelona.  It was probably 1979. The news was that a Lama would be coming shortly. It would be my first experience of being in the presence of one. When the opportunity was offered to go and pick him up at the train station I was not eager to go and preferred to stay home and have things ready on time for his arrival at the Centre. I had seen his photo and he did not seem very attractive, his face full of smallpox scars.

So when the doorbell rang I went to open it without any real expectations.

 There he was, a bit plump, his belly firmly in front of the rest of his body and with the most warm, joyous, friendly smile he exclaimed rotundly:  “Amma la!!”. 

I didn’t really know what he meant. Later I was told that Amma translated as Mother and La was an honorific particle. But it didn’t matter. 

He completely won me over. 

That night my dream came back to me, But it was completely different.
I was on stage and had no guilty feeling, nothing seemed amiss. The stage was brightly lit, full of colours and filled with actors happily performing their parts. If I forgot my lines someone would discreetly whisper the words I needed to say. So any feeling of guilt or awkwardness had no place to manifest. I was happy and at ease, and so was everyone else. 

So at the end of the play the audience called for the Director, we looked to the side of the stage and…….who other than the Lama was coming to the center of the stage! 

And the shock was so intense that it woke me up only to hear the Lama’s steps in the corridor, he was going to the bathroom in the middle of the night.

My heart was beating fast, so I got up and when he came out I went after him and cuddled down outside his door for the rest of the night!

And that was the end of the nightmare  for ever.  

Ani Mavericka. As told to Jo Clifford.

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