Our Stevie

I was asked to write a comment piece for the i newspaper following the death of Stephen Hawking. Here it is:

I have motor neurone disease. This is what Stephen Hawking’s death means to me

In our family, we called him ‘Our Stevie’. Well, you need some laughs when you get a Motor Neurone Disease diagnosis. ‘You might live as long as Stephen Hawking’, well meaning people have said to me. Genius, massive inspiration, innovator in non-verbal communication, yes. Slightly annoying to the average MND patient, yes. One third die within twelve months from diagnosis, the average is 2-3 years. Then, there are the statistical outliers. In the three years since diagnosis, I’ve lost the use of my legs, arms, hands, voice, tongue and swallow. I am a 50 year old father of two children, aged 11 and 15.

It is possible to be at one with yourself in adversity. I am generally positive, I write children’s books and a blog with my eye gaze computer. I do what I can with my kids. I try to support my wife, now a single parent. I campaign where I see injustice, such as when my lifeline Motability vehicle was to be taken away. I have my daily routine in the care home where I live. Four feeds through the stomach tube, twice daily ventilation, hoisting, personal care, outside time. I go out in the Motability vehicle a few times a week. I keep up my love of languages by watching foreign films on Netflix.

MND teaches you alot about people. Some step up, others disappear. It’s simply incredible. One couple have changed their life to help us, one friend helps with medical matters and another has built my website. Another person visits every week, has illustrated my books and takes me out; I didn’t know her two years ago.

But it’s not ok. It’s not ok at all. I miss being an active dad and husband. I can’t have a decent conversation with my kids, I can’t help my wife, I can’t support my parents. Never mind me. The impact on the family is huge. The kids are very frustrated, because I can do so little. There is worry about financial security. ‘Why can’t we have a normal family? Will you get better, Daddy? Why don’t we go away like other families?’ Our kids have watched the physical decline of their dad, they’ve seen falls, dribbling, loss of speech and, well, dad just being dad. Still they are positive and enthusiastic young people.

The untold story in any illness is that of the partner who is well. In our case, Jane cared for me in the first 18 months, and has held the family together. ‘When is Daddy going to die?’ If that wasn’t enough, she has to deal with unhelpful and uninformed opinions from some people. Daily life has to go on, all with the knowledge that I will die at some time in the not too distant future.

I encourage you to read ‘Travelling To Infinity – The True Story Behind The Theory of Everything’, written by Jane Hawking, to whom Stephen was married for 30 years. It’s a story of immense personal sacrifice, of her love for an often demanding husband. She didn’t get many plaudits, while her husband was being rightly praised.

So, our Stevie, thank you for your life, rest in peace. I hope that you get to know your Creator, who was not part of your earthly existence. I try and imagine how it is for Jane and the three children. God bless you.

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.

2 thoughts to “Our Stevie”

  1. So well written Andrew ….I understand how u feel …I still ache and grieve for my brothers …stay as strong as u can . I hate motor neurone disease …..XXX

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