Surely not?

Are you in a situation which provokes strong reactions? Do you get overwhelmed with the kindness of some and shocked by the responses of others? I have quite simply never experienced such extremes as during the past week. Our integrity and judgment have been questioned. We have been told we are negligent, we have been threatened (verbally) and we have been insulted. If I were to tell you by whom, well you wouldn’t believe it (nobody who lives in our area). If I were to tell you what was said, well you certainly wouldn’t believe it. You don’t need the details; I’ll give my thumb a rest.

Being parents in a family where one of the parents has a ‘terminal illness’ is incredibly tough. It is only possible to carry on with great support. We live with the above two words every day; every day marvellous people walk through our door to talk, to play, to mend things, to laugh, to share a meal; every day people at school and elsewhere provide wonderful support for our children, trying to understand what it must be like for them. Every day I get calls, texts and Facebook posts/messages from all over the world. 

Then we remember the dark, incomprehensible contrasts of the past days. Forget it. 

My dad (you know he’s 87) plays basketball with Sebastian and gets me dressed and undressed a few times. He gives me a shower. We walk/drive around Kings Langley together. He understands our situation. He enjoys a can of Boddingtons and checks out the Kings Langley Club jazz night.

By 4PM I want to get more fresh air, but it’s cooler now. Jane gets me wrapped up (‘I’ll get you warm’). I wish I could join in the basketball, but I am happy for Sebastian and my dad; I enjoy the sun and breeze. 
We have Valentina’s class teacher over for a great evening. Homemade minestrone soup and apple pie are served. Ping pong games, encouragement for Valentina learning her lines for A Midsummer Night’s Dream.

Yes, strong reactions. Things become so clear in challenging situations. The need to really understand what a family or person is going through is huge. I am so grateful to be surrounded by countless such people.

I pray for the people who got it wrong. Maybe they can learn. I hug Jane, I lie in bed and see the stars. It’s about compassion and understanding.

Postscript: the Jeremy Vine show on BBC Radio 2 today covered the death of Mark Stone. Mark had MND. He wrote the following blog. Good to see I am not the only one to see how this brings out the best and the worst in people. He also talks about how it changes everything. Worth a read:

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.

3 thoughts on “Surely not?”

  1. Andrew, I am sorry you have had such comments. That is about them not you. I am sure you know that’s the view of a minority and your experiences to date have detailed so much kindness and compassion. Thank you for sharing your thoughts, feelings and experiences on this journey. They have been such an eye – opener for me. As soon as I receive them, as I mentioned before, I literally stop for a moment! You are an inspiration and your family are incredible, much love. Colette x

  2. It’s all there, the light and darkness coming up as you progress on your path


    What are they bringing up in you? Can you release that? There could be a gift in it somehow for you.

    It;s easy for any of us to get into victim mentality, so easy and it always helps to release that and what is behind that to remember our own power.

    We are all in it together.



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