Suspended

I look out through the glass.

Down there, a peaceful orb rotates calmly,

Imperceptibly,

Moving round,

A little squint.

Off balance but

Perfectly balanced.

and

In my glassy capsule

I am above, away, at bay.

I have no meetings, no tensions,

I lie and wait, and dream,

And gently rotate each day

As clouds drift and gust across my view.

I am above and away

And below and inside.

I see cloud and sun above, and

Cloud and sun below.

I am, I suppose, neither

Here nor there

But both.

I long to escape my capsule.

But here I am safe,

Far above the confused reality of earth.

Far below the peace of an unknowable universe.

I am in limbo, suspension.

The inferno burns.

The universe winks

Silently.

I am in limbo.

I see both but envy neither.

The inferno, the universe…

They are inside me, inside us all.

Outside, trees continue to grow.

Bulbs are dormant, awaiting warmth.

Birds begin to struggle for food but

Pair up when sun shines and rain abates.

The earth slowly spins on its squint axis.

Perfectly balanced.

Up here, I wonder whether I shall ever return,

Or forever just look out and wonder at the glistening orb,

Sheathed in whispering cloud.

It will still be there after I have gone.

Our time is limited, but trees live on.

We do not grow old

I am on a stage, in a play, without a script.

Forgotten my lines. Forgotten my role.

I watch the action developing, listen to the speeches, the arguments, the drama.

Some of it is about me, some about others.

Some, indeed, I have no clue about.

And then I snap out and come to life…but without my lines.

What should I say? When? How? Where?

My fellow actors say just be in role, just ad lib with whatever seems right.

…and that, my friends, is how I view my life, or my role, at these times when things scramble.

….

Yesterday someone said something particularly nice to me, complimentary.

(You know who you are.)

And when I later walked in the rain filled field with Lupin I knew I would not sleep easily that night, because my head would be filled with what ifs, and if onlys, and replays…and then I would dream of something, probably not pleasant.

And so it came to pass.

And here I am, reflecting on the roles and games we play in our lives.

We have visible, outward facing roles, which we develop when we have to fit into new situations and dynamics. They change as our work and family and leisure lives change, as we live and the years pass.

(I think we don’t grow old; we LIVE. Years pass, and we change as lives around us change, and the world changes. Mechanically we wear out but we still think and feel, often as if we were still 21.)

We have invisible personae, our inner thinking and feeling selves. thoughts, fears, dreams, hopes, desires…most of which we hide inside, away from risk of exposure and hurt or disappointment.

A person might be seen as a happy, cheerful, jokey type, but inside be quite different.

One who looks less relaxed, more of a lonesome type, or just quieter, might inside be happier and more at peace.

You just do not and cannot know…until you actually get beneath their skin…till you take the time to listen and hear and understand them.

….

The link with dementia?

Is that brain disease is no different from any other disease, except you cannot see it or stop it. So it is inside, nibbling away, and we can only imagine what it must be like. We cannot say, yes, you limp because of your broken leg. Or you cannot get up because of arthritis.

Nope. With brain disease you look just, well, ‘normal’. At least until you develop tremor or rocking, or you mumble to yourself. Or any number of other ‘ticks’.

If others don’t know that you have brain disease they cannot see it. They only see what you show them. If you look and sound in control and ‘normal’ but they know you do have brain disease they don’t really know what to think. Or expect.

Completely understandable, and I don’t criticise it. Because until they talk to you and listen and hear you, they don’t know you. They only know their expectations.

Doctors who don’t ‘get it’ ask: ‘do you really have dementia?’.

Most people express surprise and admiration.

But actually it is just us playing one of our roles. We don’t have a script. We just say and do what seems appropriate at the time.

And, believe me, it is not always appropriate! (As some of you know.)

Later, though, we go internal and think. And reflect. And those are the days that are followed by the curious and uneasy dreams.

(Facilitated by donepezil in my case.)

You don’t know a person until you have walked a mile in their shoes.

(Thank you, Harper Lee.)

What to me may seem just normal and just being me, may seem surprising or unbelievable to another. But that’s only because you don’t know me. You may think you do, but you don’t. Not till you have walked that mile.

We are all learning, all of our lives, sometimes knowingly, sometimes not. We change. We learn new character roles to play. We learn new scripts. We find ourselves in new places. We adapt.

We do not grow old.

We change. And we wear out.

But inside we still think and feel and dream, looking behind us at our past, and ahead to our future. You just don’t see that.

Many assume that Shakespeare wrote that old age is like childhood, dependent on others, muling and puking. (As You Like It.)

We do not grow into children! Our bodies my fail but our minds do not. Our brains may not send the right signals but our thoughts are still intact, inside.

We do not want to play children’s games when our minds are wise and still wonderful.

….

Personalised care?

Walk a mile in my shoes before you tell me what’s good for me.

Stress, cortisol, and hugging

It’s a funny thing. This old disease, eating away my brain.

I can’t see it. I can’t feel it. I don’t know where it is or what it’s doing.

It’s been inside for decades. Whatever caused it to start, whenever it started, I hadn’t a clue. Still haven’t.

Well, perhaps I do have a few clues. But they don’t tell me what it’s doing right now. And what I can expect next month or next year.

The first we know about dementia, is when things begin to just not quite work right. Names. Words. Trips and slips. Hesitation. Writing the wrong words. Swaying in the shower. Misjudging distance, or time.

And by then it’s too late.

Well, actually it was probably too late thirty years ago. And anyway, too late for what?

Healthier living? Less alcohol? Less fat and salt? More exercise? Less stress?

I ate all the ‘wrong’ things as a child. Butter, sugar, syrup, fatty meat and gravy, cakes. Sweets of course.

I drank alcohol from around ten. Following the family tradition. Habit. Escape from unhappiness.

I lived with numbing anxiety all my life. Anxiety about what others thought of me. Did they like me or think I was an idiot. Probably the latter, as they showed it in their bullying early on.

If I avoided the cracks I might escape.

If I always did things in even or round numbers, or fives, I would be ok. Blinking. Coughing. Repeating things in my mind. Everything in even numbers, in fives, in tens. Touch one finger, touch them all.

I always looked at people’s faces and eyes. Were they looking at me? What were they thinking? Did I look silly? Or was I unnoticeable?

I wore colourful clothes because I wanted to be seen, to be different, unique. Yet I couldn’t stand making mistakes, or doing something stupid in public.

Yes, I had a yellow suit with red buttons!

I know that I strived to be the best in non contact sports and music to prove that I really could do something to be proud of. And to prove that my parents really should have loved me.

I was sent away to board at 11. Hated school. Was bullied and called names. Couldn’t stand up for myself. Was frightened all the time. And found escape tricks.

I went up to a little pub in the summer for a couple of pints before tea. If you went on your own no one cared.

I learned to love picking wild flowers in the grounds and putting them in a glass on my desk.

I drank sherry in my study. On my own.

And that set the pattern for my life. And my brain.

The reason I got through my life was a year’s psychotherapy with a wise old man in my mid twenties. I learned a lot. And what you know and understand you can live with.

Most of the time.

I have had two breakdowns. The first was towards the end of a three month solo camping journey around France when I was 24. One day I could not leave my tent. Could not be seen. Could not meet anyone. I was frightened into mental paralysis.

I loved my Citroen

The second finished my teaching life. I made one of my bad choices, to get promotion by joining a rough school. It was out of control, and I was totally unsuited to it. After a year of indescribable anxiety and stress, and long long hours of work, I went to pieces. My bodily and brain functions began to shut down.

I was eventually diagnosed with chronic fatigue, and that was probably right. The fatigue that fighting a losing battle with your mind leads to.

I know now that cortisol is released in fight or flight situations. Stress, anxiety, self defence, escape…

I believe that excess cortisol over a lifetime has attacked my body. My brain and my organs. My joints. My muscles.

I believe that stress over a long period causes the body to attack itself.

My first real disease was in my back, aged around 20. I played hockey (badly) and developed pain when playing. Xrays showed parts of two vertebrae had stopped growing or were dying away, leaving unstable joints. There was no known cause.

That was the start.

So why am I telling you all this autobiography?

My diseased brain is real. It is not imagined. It is clinically evidenced. But the causes are not known.

I spend a lot of time nowadays back in the past, reliving situations, decisions, feelings, even calling out in embarrassment or anger. I can see that my horrid self doubt and anxiety have caused a lifetime of illness. A GP once said to me that having three different conditions at once was just not possible. Hence, he failed to diagnose several in me.

Apparently I hold the record currently for the number of pills taken each day in my local town!

That is not chance.

I don’t want you to feel sorry for me. Life is what it is. And I have had a lot more luck than many. Now I am retired, and can choose to do only what I enjoy, and I live in a beautiful, quiet place, I am happier than ever before.

What I am trying to say and show is that love, and showing love, touching, hugging, knowing you are loved unconditionally…they are the big things in life. Without those, well, life will be pretty bleak.

I feel my little grand children are blessed, when I see how their mothers unconditionally show their love for them. They will feel loved and feel strong.

There is no medicine that can make up for lack of love, for lifelong mistrust of people, and for paralysing anxiety.

So as different symptoms appear, as they do, and as my body and brain gradually degenerate, as they do, I will take comfort from believing that what happened to me will not happen to my grandchildren. And I will hope that I have not done harm to my own children.

I love them, and I hope I showed it.