“Yesterday I decided to give up something, not for Lent, but permanently.
Since this disease has taken hold, I’ve got used to abandoning things. I gave up rollerblading three years ago and skiing two years ago. The weakening of my legs put me in a wheelchair some months back. But giving up the flute yesterday hurt a little bit more. The first two had been activities, the third about getting from A to B; but the flute was somehow more part of my soul.
When I was travelling in my late 20s, it was always with me, in my backpack. It became a way of communicating and entertaining. Playing was a way of expressing some facets of my personality that I had difficulty in doing otherwise; the flute was a way of conveying tenderness and softness. On my second date with my wife
In the past couple of
Yet, although I wouldn’t recommend motor neurone disease to anyone, I do feel that in some senses I am lucky.
Partly that’s because my particular version of it means that I’m living longer than most that have it. That has given me time to adapt to the illness and to follow some advice from someone else with MND: “Don’t dwell on what you can’t do; concentrate on what you can do”.
And so I have not mourned the end of my skiing days or the end of my rollerblading, but rather regarded them as activities that I once did and which I enjoyed. I don’t want my memories to be tinged with frustration. I have tried to replace each former activity with a new interest, such as writing or singing. Singing allows me to continue some form of creativity in music, with the benefit that it is a meeting and joining in with others, as well as being good therapy.
The medical professionals say that I am taking this illness very positively and some even that my wife Ilana and I are inspiring. I have a mixture of feelings about this. Firstly, I know that I could wallow in self-pity; until I was about 20 I had a tendency do so but, through the remark of a friend realised it wasn’t doing me – or anybody else – any good. I know that my mind and my senses will continue to operate whatever is happening to my muscles, and
I might as well accept the disease and its progression and make the best of my time; it may take over my body but not my identity – I am still above all Crispin and Grandpa.
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