A day with former colleagues, now friends. A realisation, not for the first time, of how I am. Talk of family, activity, sports events, plans, running, work, well normal life. Self-fulfilment, self-actualisation. Well, of course. But you still have your self-worth, Andrew; my energy and strength a fraction of what they were; I don’t have much feeling of being valued by those closest (ego?) and the past is done. Janet Jackson sang ‘What have you done for me lately?’ A 48-year old man should be in the prime of his life; before I worked hard and tried my best for my family. The effort to move, to go to the toilet, to lift (say this iPad), to use a normal fork, the feeling of general tiredness, the yelling in the family of frustration. (Remember, Andrew, there are tough times in ‘normal’ families too).

The sentiment that I can heal myself; clear the thought patterns which have brought this about. Go deep into yourself. The view that the disease serves me and gets me attention.

While everything goes on with and around me, fasciculations continue; constant companion. They make me feel tired.

Is this really me? It can’t be; not with this. 

Sometimes too sad to look my children in the eye. Sebastian constantly testing me and hoping for a recovery. Playing catch in the lounge with the lightweight woollen ball he made at school. ‘Daddy, great you can still walk; more than I thought.’ Valentina listens when I explain to others; my God this was not meant to happen to a 13-year old.

This blog reflects all the moods and there are incredibly dark days. 

Jane does everything to keep the show on the road, and more. Thank you. What can it be like?

As dusk comes, Valentina accompanies us singing carols; thank you for the music everyone, the smiles. I feel some peace. The log fire brings back memories of my own childhood. The children are mesmerised and keep it burning. 

The mind, the mind.

Thank you Gillian and Michael for your wonderful hospitality. We are blessed to know you. In the car on the A3, a male voice from the back seat asks ‘when is Gillian next free?’ 

The process of writing helps me. Thank you Apple (or was it Samsung?) for creating the touchscreen keyboard.

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.

5 thoughts on “Desolation ”

  1. Those dark days ….they come without warning ….Geoffrey , my big strong brother finding that he needs the dammed stick I left with him …saw him hitting the apple tree with it …my heart aches and then we burst out laughing when an apple fell on his head! Little shafts of sunlight come through ……xx

  2. It strikes me that the sentiment that you can heal yourself is a profoundly unhelpful one or, as they say in Yorkshire, ‘b******s’! We’re all allowed a view, hey, so just expressing mine.

  3. As you ride this roller coaster, you continue to share with an open heart, and I benefit from your experience and what you learn. All the wonderful things you get a glimpse of are, of course, wonderful, but the depths of despair, anger, and struggle… although everyone has them, it’s easy to bury them and not look. When you show a little bit, it resonates with me, and I can touch a bit in myself too. Thank you.

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