Maria Callas – her story told through the eyes of the Paris butler. Black Pearl, written by Federica Nardacci and performed at Rudolf Steiner School Kings Langley, told us about Maria from someone who knew her well, yet had a personal distance. It was very effective and was made more powerful by the language and delivery. Next stop is Singapore in November. Great idea. How about Chelsea by the coach driver?

The aunt comes each week and tells us the story of the nephew post-brain haemorrhage. The dad tells me his daughter’s story. They will remain between us. The stories from the care home, ours included, make me stop every time. The devotion and dedication to the affected person and the family, the need to look after yourself, the children in the middle. Every single person has a story and sometimes their behaviour is difficult to accept. Each time I learn about a fellow resident I drop a preconception. I wish I knew more of the reasons why the folks are here.

The residents enjoyed having Bengi around. Thanks for bringing her Valentina. You said you had overcome your fear of visiting the care home. That was quick and it is not easy to be here. I enjoyed our trip to Cafe Nero.

A famous concert pianist was on Desert Island Discs this week and his only non-classical selection was Stairway To Heaven. He talked about heavy metal as he grew up as an only child. I bet he listened to the Friday Rock Show. With so many bands playing, it was a fantastic time to be a teenager. Remember those album covers? Also got me thinking that I should choose my eight pieces of music. What about yours?

I love it when people work with me to get things better. Jayne and Frank from the Hertfordshire Wheelchair Service and Lynne from the MNDA are the stars of this story. Ask, logical argument, collaboration, persistence from us all. All while my needs change. Now my new wheelchair has head and attendant control and the riser takes me to about five feet ten. Tweaking all the time. Great stuff.

I enjoyed meeting Jane Hawking today. She spoke about the challenge of having MND in the family. I asked what was the main thing going on in Stephen’s brain and the answer was physics. I asked how she had kept going before the money brought help and the answer was parents, friends and her religious beliefs (and I am sure love and determination). The MND Association reception with MPs was the first MND event I had been to for a year and now is the time to get involved again. The key themes were the huge effect of the disease on the family and the constant and significant financial strain.

Trips in our wonderful VW Transporter remind me to thank everyone for funding the deposit. I am really proud of what we achieved together.

Amongst the hullabaloo my thoughts come back always to the lives of Valentina and Sebastian, and to Jane of course.

Author: Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

One thought on “Van”

  1. I love this line. ” Each time I learn about a fellow resident I drop a preconception.” Great blog as always. Love to all.

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