Sarah, Kris and progression, progression
I’ve added two new people to the portrait shortlist on my facebook site this week. The first is Sarah Outen, someone I met through this website. She has no connection to MND, isn’t ill and isn’t a researcher, but she is probably the most optimistic person I’ve ever met. Have a look at her website, watch her film, and you’ll see what I mean.
For most of Sarah’s life her dad suffered in constant, severe pain from rheumatoid arthritis. He was a fighter and an optimist though, and Sarah is no different. When he died unexpectedly in 2006, 23 year old Sarah set out in a tiny rowing boat, to row solo, 3500 miles across the Indian ocean – in his memory. She succeeded, and I feel she is living proof of what optimism can achieve.
My second person is Kris Hallenga. Kris is another inspirational young woman. On going to her GP with a lump in her breast, Kris was told ‘its nothing, just hormones’. Eight months later she went back again, still concerned, and was diagnosed with stage 4 breast cancer – there is no stage 5. Despite undergoing intensive treatment, Kris has set up a charity, CoppaFeel, to educate women, particularly young women, about breast cancer. She is a fiery, determined person and her optimism is undimmed by her illness.
Progression in MND happens continuously, drip, drip, drip. Every muscle is slowly becoming more and more useless, day by day. You adapt to this degeneration as it occurs, as best you can. Sometimes though, you get to a kind of crisis point, where a particular activity becomes dangerous, painful, or impossible. This happened to me this week. The muscles in my legs, arms and neck have been getting close to the minimum strength needed to sustain my daily life for many weeks now.
To a casual observer, and probably to someone close to me I look much the same as I have done for several months. But I am on the edge. I have limited movement and am as weak as a kitten. I dread the inevitable falls and the appalling cramps if I turn my head sideways or lift my arm above the horizontal. But it still came as a surprise when, this week, drawing became a problem. I had been leaning over the portrait of Vinita trying to ignore the pain in my neck when I found I couldn’t lift my head up any more. It was extremely painful, and I had to stop drawing.
But life goes on, and I will not let MND beat me. I will not stop painting the portraits. By hook or by crook I am going to get to 100. So I designed a contraption, a forehead rest to lean on while I draw, and save my neck. My dad made it for me and I am back drawing today.
And on the weekend something brilliant happened. Nancy took her first steps. Three faltering tiny steps, but a lovely, beautiful moment that I was alive to see. Life is good.
