Zoom Zoom Zoom

I am going to celebrate the wonderful friends I have made since being diagnosed.

It’s almost seven years now, and seems like an age ago. Like everyone else, I had no idea that there could be a growing community of people living with dementia who were going to disrupt the established rules and behaviours around the disease.

Why was I unaware? Because no one in the establishment knew…or cared to find out. Because they did things how they did them. And after diagnosis there was really no hope.

They gave each of us a riskerectomy and told us to prepare for death.

But then, well, somehow, by chance, I found out about a ‘conference’ meet up in Llandudno, where I met some of the most wonderful people in my life. No names; they know who they are.

Actually, one name. Chris Roberts. It really was him that lured me into his den of friendship and disruption. And the DEEP network.

From that weekend flowed my stream of activity, meandering wherever it took me. London, Manchester, Birmingham, Sheffield, Cardiff, Nottingham. Every event brought a few of us together for a shared day or two. We often wound up near/in a Wetherspoon. Or a pizza restaurant. Remember that amazing tenor, Damian, drowning us all with his beautiful voice in Doncaster?

Conferences, training events, consultations, planning days. Speaking truth to the establishment, hoping to influence change. Often telling others starting their journeys what is possible, encouraging, mentoring…leading.

But we met only occasionally, and often by chance.

Our networks expanded. More people living with dementia became involved in the work. We shared the load, broadened our backgrounds and skills, developed trust and togetherness.

Then came Covid. All our travel and meetings stopped. Abruptly.

And thus erupted…ZOOM.

For a year many of us have had weekly zoom meetings. Chats, jokes, catch ups, sad moments.

We’ve done serious work on research and ethics, dementia pioneer projects, dementia diaries, and craftivism.

We’ve helped each other, led creative craft sessions, made films.

We’ve shared our blogs about our own lives and our work together.

Above all this though, we have grown wonderful friendships. We look forward to the sessions that mark our weeks. And God we have fun. Stupidities (and crudités) that might never happen face to face in a busy day.

We have sorted out into groups that mix well…naturally. Some leave, some join…just like any other friendship group system in normal times.

We have missed our families, and our hugs…Oh our HUGS. We’ll have to hire a secret venue in the summer so we can just hug, unseen. (20 seconds for trust…remember.)

When days are miserable, or pain is unbearable; when loneliness hurts and there seems no point…we can look into our diaries and…there…next Monday…there’s the next Monday Madness, or Tuesday Tonics. A DEEP group facilitators meeting, or the dementia diarists.

There’s always some crafting that we can do, painting or carving or taking fabulous photographs of barn owls or teal. The moon wins for popularity just now.

There’s the allotment or garden. The lanes and hedgerows. The park.

But as evening draws in, and for many a long sleepless night, we can always remember the next meeting to look forward to.

That, my friends, is what the last year has given me. Your friendship and trust and fun.

Thank you all.

Hurt

Perhaps only those who have been hurt can feel hurt.

Perhaps only those who have experienced joy can feel joy.

Perhaps only those who have felt the fist of anger

Can deliver that anger.

Perhaps only those who have always known contentment are the ones who can be content.

Unhappiness breeds unhappiness.

Just as joy breeds joy.

And fear creates fear just as

Hurt germinates hurt.

A clock can be turned back;

Ours cannot.

Is there some magical anaesthetic?

No.

The trick,

And it is a trick,

Is to undo the unundoable.

Look back in anger and you turn to

A pillar of salt.

Hang a thick, thick curtain behind you

And look forward.

Leave the past where it is,

Entombed in a sarcophagus of its terror.

Climb out of the hellish inferno

Into light.

Look out, see, and be amazed.

Guilt

Nature abhors a vacuum.

It doesn’t do guilt either.

Whereas we human beings,

Gifted as we are,

With absurdly large absurd brains…

We can learn and talk

And make and take.

We can feel and reflect

And destroy and create.

But we cannot forget.

We are the lucky

And the unlucky.

For once locked in, those thoughts cannot be lost

Save by disease and accident.

And death.

We are doomed to wander through our minds,

Ancient mariners who have to tell our story

Just…just to lower the depth of guilt and horror

That can engulf us.

The oak tree stands and watches

As we pass below, wrenched by demons and horrors,

Tortured by guilt.

The wise sit under the branches and look up

And listen to the wisdom of that old oak.

Turn the noise off

It’s a month since I wrote a blog.

I’ve run out of things to say.

The old activism has been squeezed from my arteries, as my world has closed in.

The desire and drive to make change happen and to address unfairness have diluted, and I more and more watch from a distance.

Meetings and conversations used to trigger thoughts and reflections, and blogs.

Now, listening to the radio’s many really interesting programmes lead me to write from time to time.

But I just looked at the Pathways young onset dementia facebook page. I saw that many of my dementia friends use it, or are mentioned there. I find Facebook very hard to use. With only occasional visits, I have never quite got the hang of it, and unlike some apps, the logic of navigating the site just does not work for me. It’s mot intuitive, at least not for the way my brain works.

I also have found that much of what gets posted on many pages is, well, plain boring and of no interest to me.

So what should I write about?

It occurs to me that not meeting people frequently, just in the daily trivia of living, means we have lost the opportunities to loose out our frustrations with what we read or hear, in the course of those ‘morning…you all right?’ type casual conversations. So we can be tempted to let off steam in blogs or tweets, or Facebook posts instead.

I enjoy playing around with words, and creating sketches out of the absurdities and sheer hypocrisies I witness, in government and in wider public life.

This morning I listened to Ghislaine Maxwell’s brother speaking in the silken tones of arrogant, self satisfied wealth, about the conditions of his sister’s custody. Torture? I don’t condone such detention, but let us not forget the appalling reasons why she is in custody.

And yesterday a Lord health minister spoke about nurses being well paid and in secure jobs, so they don’t deserve a pay rise.

We are governed, both directly by government and indirectly by the ‘establishment’, by people who are in a different universe from 95% of us.

Remember the apocryphal image of Chancellor Lamont lying naked in his bath, singing ‘non, je ne regret rien’…after the ERM disaster in the 80s.

Covid has increased the wealth of a few, and wrecked the lives of many. Covid has also distanced decision makers from the reality of our lives, and from face to face challenge.

And yet, and yet…test and trace has 2,500 ‘consultants’ paid on average of £1,100 a day, for at least a year, ie continuously, as if employed. They’ll be paying tax at company director rates on their ‘dividends’, rather than the PAYE the rest of us pay. £250,000 a year; effective tax rate probably less than 20%.

What is going on? The world of cash machine government and financial services has gone mad. And they just go on taking and lying, because they can!

There’s always another fiasco round the corner to take focus away. The royal ‘family’, that increasingly appears to be totally dysfunctional. Another pointless press conference. The daily PR shot of our prime minister smiling and glad handing during a 5 minute drop in. Funny how he has an hour or two for a trip to a hospital, school or dockyard for publicity. Keep the good news and smiles on front pages.

And there I go again…You see how easy it is?

My reality is walking around fields and meres, along canals, spotting emerging signs of spring, hearing birds returning in a week or two, and preparing the garden for summer.

My reality is carving shapes into wood, standing at my bench, and working out how to create something. Carving is taking away, rather than adding. You have to think in reverse. What will be left after I cut this? And every time that intense focus slips…you make a mistake.

My reality is talking to, and seeing, the wonderful friends I have through DEEP and Zoom.

And all the rest is just noise which I can choose to turn off.