A snapshot of my mind

‘Why does my daddy have to be sick?’ My kids don’t care that some people find me an inspiration; they don’t care that people say I am bearing up well. They just want their old dad back. ‘Can we have a fake daddy, to do more things with us?’ ‘Look at what you can do, Andrew.’ Trust me, I do. Kids want a fully operational dad. I give them everything I can.

‘You’ve chosen this illness at one level. It gives you something you need, which you lacked. You get attention. It’s your soul’s journey. If you can heal the mind, you can help heal yourself. Unpeel the layers.’

‘This healer can help you.’ I try, I listen. I make changes. My instinct says no to the 12 month program costing £3,500. Maybe I am wrong; maybe it will make the difference. Do it for the children? Travel to Brazil to see John of God – he cures people; I’ll pass. Pay an unregistered dentist £4,500 to fix the infections ‘we’ve identified in your mouth.’ ‘The reason, Andrew, you have this disease is because of the polio injections you have had.’ 

Bucket list – travel while you still can. I don’t see it that way. 

My parents, in their mid-eighties, now try to understand what’s happening.

Joost van der Westhuizen – high-profile South African former rugby star, now with ALS. Inspires a nation and the rugby world. He has a young family too (check out the trailer to the documentary about him: Glory Game).

I want to share my story, I want to give. There is good in this situation.

‘Visualise Andrew. Visualise walking without sticks, riding your bike.’ I do, sometimes it makes me cry.

Electric wheelchair (comes tomorrow), manual wheelchair, stairlift, tip-up chair, perching stool, raised toilet seat, adjustable bed; our little world has changed a lot in twelve months. How on earth do children deal with that?

Kindness continues unabated: my wife and kids first, £12,000 donated to enable me to secure a Wheelchair Accessible Vehicle, meals delivered to us by the school community, marathons run for me, help at the hospice, the calls, the texts. The special people who help and who I laugh with. Thank you all.

I love the feedback on the blog. Keep it coming!! Free speech lives.

Money decisions. Financial security. I have no fear. We live in a world of abundance.

Self-worth? They tell you that you have it. ‘You’re still you, just a different you.’ ‘Look at what you did.’ I know, I know. I look in the eyes of the children. Self-worth? Maybe that’s my mind.

‘Prisoner in your own body’, ‘devastating disease’, ‘in the end you lose your…..’. I don’t like how the media writes about this, so screw them.

Tomorrow I will wake up with joy to see my family, and I will give it my best. It’s all any of us can do.

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 “A snapshot of my mind”

  1. That really sums it all up, Andrew. We love you and all you do – for the children, Jane, Valentina, Sebastian and yourself. Keep at it!
    Love, Mum and Dad (in’t frozen north – Yorkshire).

  2. I look forward to many more laughs with you at the golf club Andrew, maybe a beer next time instead of coffee (ssshh that’s between us!!)

  3. Andrew,I have just read “your snapshot”. Very thought provoking,for everyone.Keep the writing going,you have a great gift for it.
    John H

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