Not just about Dementia.

This has been a Quaker week not a Dementia week. I went to Lancaster for A committee meeting of the Quaker Disability Equality Group. A small unassuming group that nevertheless achieves a great deal. It is because of QDEG that there is a lift to the platform in the main Meeting Hall (The Light) that the garden of Friends House is so accessible and that the main disabled loo is so well thought out that a group of learned professors meeting at Friends house to create a tool for evaluating Dementia Friendly Communities said it should be an example of what could be done.  Woodbrooke has listened to us, and made significant changes to make courses more disabled friendly  and we have raised awareness of  disability issues around BYM. The committee includes two friends with severe visual impairment, our amazing stone deaf treasurer, a member with severe skin disorders and some mental health issues, a severely dyslexic member, me with Dementia and two former carers. Like so many other Quaker groups we have formed firm friendships as we have worked together. We have also had the privilege of working with Jonathan Griffiths, perhaps the most severely disabled person I have ever met. Sadly Johnathan is too ill to meet with us at the moment but no one who has ever met him can fail to be in awe of the strength of the human spirit and grateful for his wisdom and practical ideas.  Normally our meetings are by phone conferences but we try and meet face to face twice a year. When we do,  I understand the delight in the famous minute  of earlier  Friends when they said ‘ we have looked upon each other’s faces.

Business meeting this morning before MfW and the satisfaction of knowing that we are financially stable, that attendance at meeting grows all the time and that the Meetings for Learning go from strength to strength.

U 3 A Poetry group this week when we had a visit from Staffordshire poet Bert Flitwick reading and talking about his poetry and inspiring me to write the following when I got in – the third of poems about the experience of Dementia  I am starting to put together.

Can I take your baby for a walk?

Can I take your baby for walk ?

I would ask in those innocent pre Bolger days,

And mother, mithered from mangling and sleepless nights

Said yes to Lizzy Harvey’s nice girl

And proudly I would push the pram.

 

Can you baby sit next Saturday?

They would ask in their early marriage still dancing days,

And I would always go creeping carefully up the stairs

To listen to that quiet breathing.

 

Could you take this baby for a month?

Harassed Social Worker, unspeakable story

And I would hold them in my arms

Praying my short lived love

Might make a difference

 

Will you have the children for a fortnight?

And I would say an eager yes

No need of checking diaries

Claiming the rewards of nannydom.

 

But now they don’t ask and I dare not

Sleepover, Potterworld. walk in the park

All forbidden. I feel their fear

Suppose she?  What if?  Dementia’s biggest loss.

 

In common with so many people with Dementia, poetry is so important to me, I can’t cope with novels any more, I read newpapers, short stories and lots and lots of poetry and of course love audio books. But poetry, reading it and writing it has always been my delight. I can still feel the rage I felt towards my junior school teacher, giving us our first experience of writing  poetry and refusing to believe that my offerings were mine. I could do it – still remember rhyming should with bud.

And I’m still immersed in the gift of gifts, James Joyce’ s Ulysses on audiobook read by the incomparable James Norton..

A 70 whatever I am woman , with middle stage Dementia re-engaging with Ulysses and loving every minute of it.

Can’t be bad.