The Clear Fresh Light

I have pasted this blog post  from a wonderful man’s website – Patrick Joyce – as I wanted to share it with you. When I read it, I felt all sorts of things – rage, peace, admiration, respect. I wrote about Patrick a short while ago on here and went to visit him shortly afterwards, for he calls himself ‘The Incurable Optimist’. With a name like that, how could I not go and visit him?!

Patrick is an artist, a poet, a writer, an inventor, a husband and a father to three gorgeous, gregarious children. Patrick is dying from motor neurone disease and is on a mission to paint one hundred portraits. Here is his website and here is his latest blog post – a true gem of a piece.

The Clear Fresh Light

Our new friends, Alistair and Alice came by a couple of weeks ago. Alice brought some flowers – gladioli. Bright green stems, segmented in tight, spike tipped sections, alternating in fresh, upwards promise. Plumper at the base, the lower segments were full to bursting, the tip spikes softening, uncurling, to reveal a hint of the compressed pink future within.

Over the days that followed the first flowers emerged, fresh and young, flawless delicate petals filling and rising from their firm green casings, a breath of youth, perfection and beauty. And as the first emerged and bloomed, then so it was with the second, and the third, and so on, up the stem – each flower emerging, young, perfect, beautiful.

And as the upper buds opened, so the lower flowers matured one by one, opening and spreading to reveal their full, stunning, adult beauty.  Then for one sublime moment, just as the last bud started to open – as if time had stopped – the flowers reached the height of their perfection.

But time does not stop. Time moves smoothly, constant, relentless. One of the fine, spear like leaves lowered, wilting, and slowly bent down over the rim of the vase. Then, as the topmost bud reached its zenith, so the petals of the lowest flower browned at the edges, drooping, sagging, then fell.

As the days passed so the flower’s decay deepened, until one morning, they were gone.

It is normal to rage against dying. There are many days when I feel anger, bitterness and frustration at what I have lost and where I am going. I think about the big things that I can no longer do, miss greatly, and will never do again. I think about the more personal things that are fading away. And each day as I mourn my loss, the silent thief takes away some small new thing.

As it is with the flowers so it is with all things, and I am no exception. We all have to die. As with the flowers, I have had my days in the sun (though I didn’t know it at the time), and the decay has set in. MND is like time, it moves smoothly, constant, relentless – I too am wilting and failing. And one day I too will be gone.

But there is some solace in the experience of this disease. One thing MND does offer you is the certainty of death, there is no remission. With this comes clarity and focus – or has done for me. I experience life more intensely than I ever did and enjoy smaller things. I enjoy what is important and I enjoy it now.

On Friday I went down in the wheelchair to pick Reuben up from an after school club. Because it was a bit later, the pavements were quiet, nobody around. The air was chilly with the first cold north wind of autumn, but there was still warmth in the sun and the light was beautiful. The sky was a deep blue and the trees an intense palette of greens and browns. As I wheeled along, an old lady smiled at me as I passed, and I saw a contented dog sitting by a gate, watching the world go by. I thought to myself, how lucky I am to have lived to see such a perfect, beautiful, ordinary day.

Patrick Joyce