Letter from a new life

Shân Morgain

When it began, the seven years, I sat in a waiting room as if in an alien starship. There were other humans there, also kidnapped, but WE did not belong there. Not us.

Diagnosis of disease and death had been delivered but we had not yet received the parcel.

This is not us I thought, not us, the heroes of our story. We do not belong to this quiet club of waiting people. We are the rebels, the ones who changed the world. We are real, this is not.

Our full story began with a three day wedding long ago, going to different sacred places, linkd at our wrists by a long plaited cord we made ourselves. Glorious days, love, passion, fighting, birthing our child.

Falling with zen

The first medicine was benign with good effect. Life was little affected. He visited the clinic for blood tests and told me laughing “I’m boring again” as he passed again and again without trouble.

I did extensive research and it seemed we probably had years to come. It was so.

The second stage had him falling over, suddenly, without warning. Crash! – again.

Safety dictated he could not go out alone (crossing a road? steps?). I asked him to call for one of us when he walked about at home. The problem was he’d lived a superfit life, a tough seaman, whipcord strong. Such fluffy caution just didn’t exist for him. I screamed at him.

“I’m doing it carefully” he said, but you cannot do it carefully when you’re struck down without any signal.

To be fair, his skilful body zen usually lowered him down with no more than bruises. Except when there was blood, a lot of blood.

I recruited a GP who reasoned with him, but testosterone is not a language with reason. Still. love and life continued with all their flavours sweet, bland and sour.

We get help at last

There was little or no help through that stage though I negged for it. Then he became despondent, lying unmoving on his bed with his faithful cat. I phoned and phoned. Nothing. Then I stumbled on the key.

“He’s suicidal.” (He’d said there was no point.) The medical machine revved up.

He was adopted by excellent Dr P and her brisk treatments unrolled several years for us. He went off to his clinic dressed fastidiously in pale silk shirts, tweed jacket when cold, linen when hot. An elegant hero this one.

He loved the nurses who poked his veins and flowed lifesaving poisons into them. They were an all-nations team of gentle saints.

One day he was starting a new treatment, research described as powerful and effective for almost everyone. Dr P was away on leave. Another doctor, Dr T met him.

“You realise you only have a few weeks to live, don’t you?” she rapped at him.

He staggered home, a broken man. Silk shirt and strong sinews meant nothing.

I argued over and over and over. This new treatment was powerful, effective and lasted for nine months.

Death in a few weeks didn’t make sense. He deeply respected my brain, but there again I wasn’t a doctor.

Dr. T repeated her doom talk again, twice more, undoing my hard work each time.

Dr. T was wrong, and we refused her dubious attentions from then on. But my beloved never recovered from her stupidity and cruelty. He was shadowed by it, never again to feel sure of himself.

Visiting ducks

With no risk of falls he could drive me on outings, which we loved. My favourite was the reservoir with different kinds of ducks. Peaceful. Sitting in our comfy car watching them, we talked happily of past and future, of us, our society, our son.

The ice cream van was part of our delight, creamy cones with chocolate flake.

We were brave and talked about the things that don’t usually get mentioned. We would stand together of course. He told me what he wanted when the time came. Oh we felt so brave talking like that. We were grownups, just about.

The colours were intense, dreamlike in our small bubble.

I fed him expensive venison because it kept his blood count going. His diet had always been healthy and without drinking or smoking for decades, he really was superfit, except …

Into Mordor

The pale silk shirts were showing wear and so were we. In fear he wanted constant reassurance, constant attention, hour by hour through the days. All well and good for a year or two but seven years?

I alternated those sharp personal hours with hard research both for his needs and my own work.

He was unstintingly supportive of my work, my mighty PhD. I would never have completed it without him, faithful ally. He cooked for me, looked things up for me, discussed it all with me. The difference was supporting me was joyous, positive. Supporting him was not.

I could manage his giant needs, and my work, and my disability. What tipped the balance was NHS failures.

There were the saints, there were clever treatments at the cutting edge. There were endless patient worker bees serving his survival. NHS plus plus.

But often one section did not know what another was doing. Often no one told us things we needed to know. Often they refused to listen when we described symptoms. Oh they ‘listened’ as in silence as we spoke. Then they continued as if we had not spoken. The result was too often crisis, endless switchboards, hanging tension for hours or days.

High hope, clever skills, stupid failures, battered us across years of exhaustion. We quarrelled, snapped, held silence, hung on to the plaited cord that was us.

There were practical crises. He took a train to a hospital a distance away, left his car in a car park here. He collapsed over there, stayed inside. No one knew who I must tell so the car wouldn’t get towed away. Two days telephone torture, lost in the bowels of the beast.

Meanwhile I battled to get information from the far hospital, too far for me to visit. The phone connection failed every 3 -5 mins, so giving him support as he lay in terror was just a bit hard to do. We held on for weeks of that.

His voice weakened every day. I knew from the sound he was going into falls territory. They did not listen, on and on not listening – until he fell.

He had a little tube in his chest for pouring in medicine or taking blood. They said it was infected. They did not tell him or me it was sepsis, so we did not realise the danger. He lay with that sepsis for over a week until we found out, and told them “Take it out! Now!”

He was fingernail close to death. But the tough seaman pulled through, just.

Coming home

Nonetheless he was frail now, his veins refusing any more interference.

He came home to a royal welcome, borne aloft on a chariot with sturdy carriers. Our son slaved to clear space for a hospital bed to be installed. I got a man with van to take away our furniture to make room for it – at one hour’s notice.

I lay in exhausted stillness on a couch beside his high bed. We admired each other, still us, just about.

He worried he had not paid off his debts because he needed another three months to clear them. “Just money and I’m good at that,” I declared. He was content then to leave it to me.

There was not much of our plaited cord left, its colours were faded, but it was there.

He lay gazing at me, his guiding star, his ’good lady’. I looked at him, still good looking, still mine. I carry him forward.

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About the man himself. ‘John the Sailor’. Pilot, political educator, craftsman, Witch, Mabinogi researcher, Feminist, cawl cook, home educator, Cat Man, Pembrokeshire boy

Other articles here by Shân Morgain, known for the Mabinogi and feminism.