What does this brain disease do to us?
How does it change our lives? And our relationships?
How do we adapt to living with it?
Do we do the right thing when we keep engaging socially?
Don’t groan, but…I’ve been reflecting in recent days on life in lockdown. And I have been hearing lots during Zoom meetings with others.
We sometimes ask each other whether lockdown has had a detrimental effect on our capabilities.
Have we, for example, lost some of our capacity to engage in conversation, or make decisions, our count money?
Are we less able to find words, because we are not talking as much?
Are we finding occasional trips into the world more difficult now, after two months of isolation?
And what is it that has become more difficult?
So…Here are some thoughts of my own and some from others that I have picked up and remembered. I think.
There is a lot of talking to ourselves. There’s no-one else for many of us. My wife works (at home now) 5 days a week, so I am alone with Lupin a lot.
I have always talked to myself a lot, since I value intelligent, sympathetic listeners.
Others have said they talk to Alexa, and listen to her. Ask her questions.
And to themselves.
One or two people have had difficult experiences in the outer world, which have been disabling for a day or two.
I am trying to avoid several neighbours with whom I disagree fundamentally on many things, and who have from time to time been quite rude. (Notable exceptions thank goodness, and they know who they are.)
I remember that when I used to go to meetings, locally or further away, in the past, I often found it hard to sleep afterwards as my mind churned and thought of everything I would have said if I had thought fast enough. (And things I wanted to say but was too polite.)
I find that a difficult face to face with a rude, arrogant or simply dismissive person upsets me for a day or two, more so than in earlier years.
It is, I think, a matter of balance, and loss of balance. Equilibrium. Avoiding overload and imbalance.
My CPU has slowed down, my memory is crumbling away, and I cannot process all those tiny myriad thoughts and flecks that cross your brain every moment fast enough. Each one takes longer, and excludes others. It takes hours, days, to work these through.
It also takes quiet, calm, natural surroundings, safety and sleep, none of which are plentiful when travelling around the country, or to the local NHS Trust.
That’s why the DEEP gatherings at Woodbroke Hall in Birmingham are so lovely. It’s peaceful and loving and safe.
And that’s why isolation during lockdown has definable benefits.
The big negative though may be loss of confidence.
I and others have voiced fear about rejoining the world. Not just fear of the big V, but of the face to face stuff we will once again have to process.
Will we still be able to cope, outside our safe, quiet bubbles?
I think that a lot has been said – rightly – about maintaining social engagement. We absolutely do need to keep meeting friends and family (those we like).
We need to keep doing things that matter to us. That give us pleasure and purpose. That keep us active.
But perhaps we are actually better off, more ‘in balance’, if we disengage from those who cause us to discombobulate.
It’s difficult to disengage in normal times, as we want to campaign for change, and we are frightened of moving into the next phase of the disease. Isolation!
But actually, lockdown gives us a great opportunity to refocus. Certainly I am doing this.
And I still get annoyed when I see a tweet from a local Trust, or the CCG, or read about some health care report in the paper. But less and less. And I no longer look for trouble, aka information.
Equilibrium: ‘a state of rest or balance due to the equal action of opposing forces’.
Balance between needs and wants; ego and id; conscious and unconscious; desire and capacity…
Define it as you wish, as it applies to you. I think we all know when we are ‘out of’ balance, but we don’t always know why. Nor do we always realise when we are ‘in’ balance.
Some people describe their disease as an unwelcome visitor, or indeed they even welcome it and embrace and kill it with kindness. They may talk about the struggle to stay ahead of it, or on top of it…and sometimes activity is what helps us keep on top.
But I rather think some activity is escape rather than challenge. Escape from thoughts, from fears, from knowledge of declining capacity and what is to come.
There is a place for acceptance of what is, rather than hope for what might have been.
That is not to say give up, far from it. But make sure you avoid situations and people that drain you of energy and positive thoughts. Don’t say yes just because you want to be popular, or because you are afraid of being alone with your uninvited guest.
Say yes because you want to, and because you know in advance you will enjoy the people you meet.
Don’t lose that precious balance that is harder to preserve each day.
Lockdown has enabled us to re-examine, to reflect, and to decide what really matters in our later years, and indeed while we can still do the things that give us pleasure.
The graveyards are full of people who thought they were important, and who thought that work was more important than friendship and self.
Examine the forces that pull you apart and work out how to balance them in equilibrium.
Then, my friends, you will be content.