Being or doing?

Where is the hope in a terminal illness? Can I be the outlier? Like Stevie H. Live for the day; yes, but sometimes the day isn’t great. So many visitors, privacy gone, family life changed forever. Realisation that you can’t rely on the services; thinking too limited and creativity comes from friends. Public services cash-constrained and people risk-averse.

Our school music teacher, Claudio, has vision and passion; this is what we need. Valentina, fresh from performing in Germany, played in the orchestra at St Peters Church.

Human being. That’s what you are; not a do’er. Being is not enough, counsellors. Heard it here first.

Trip to Dalston, a Turkish area. Mixed emotions; Jane and I met twenty years ago in Istanbul. Future not the same as thought, for us.

Straw-based Guinness, much easier. Miracle elixir?

A trip to Sebastian’s room; I miss sitting on their beds. There were plans for trips when the kids had moved on; I always loved maps.

Our cherished welfare state, pride of our country, is unable to properly support a family with MND; what a shame.

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 “Being or doing?”

  1. We struggle with care …older brother not being honest about his needs …how hard it is to accept help. The grab handles, the frame round the loo to stop him falling off…the indignity of it all. He taps out …’I really miss food’ ..the smells of cooking in the home drives him crazy … No one enjoys eating any more ..we try to get joy into the days. Today watching the Tour de Yorkshire ..speeds past by Geoffrey’s place …his Model T ford on the driveway bedecked with balloons ..good fun .

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