Blog 37 -Awareness Evening of MND

Blog 37 – Awareness Night of MND
Last Saturday we had an awareness evening for MND, my friend Angie and her family initiated and did the work. Her dad died of MND , she has been a true friend as she has experienced the MND road before. Her family is so creative, her sons did a 24 hour sponsored computer game !!!! her daughter made so many bright coloured bracelets, her mother produced so many paintings and craft items with cushions, make up bags , purses and covered notebooks, her husband and sister did the raffle. Our friends did a BBQ, and brought so many delicious cakes with tea. We had 100 pebbles from Anna, as last year but they were so beautiful. We had art tables, count the sweets and a beautiful mosaic of the MND cornflower, lanterns and a hand massage corner. All evening we had musicians,and we ended with film “I am Breathing”. .. As a team we raised £1650 for MND research
The midnight walk raised about £ 2500 for St Anne’s Hospice. So we are a special team and Angie is the brightest star !!!

When we parked up at the venue and the first person I saw was Anna, an old friend from my catering days, she had been in contact with my blog but I haven’t seen her for 30 years , she came from Anglesey. What a surprise ! I really wanted to communicate with her but I was in the chair to massage hands and I had oil in my hands so I couldn’t type on the iPad . So we sat in silence and I was massaging her hands… How odd we wanted to say everything but actually we communicated by touch. I communicate with gestures and hugs and silence but people know what I want to show and my emotions . I read people’s faces rather saying “how are you ?”. I recognise a awkward silence , a angry silence and calm silence and a anxious silence. Words can disguise people I practice mindfulness when I meet people and get the vibes.

As time goes I realise my limbs are wasting so I want to walk while I can, so I have been out and around … I want to write while I still can ..I apologise for my messy writing but I want to say messages to my precious family and friends. I want to cook, paint and clear out my mess of life. Time is going too soon. I realise I have wasted days when I am sleeping . Next week I am going to Dorset with Ruth around Lyme Regis, I want to find fossils on the beach , walk on Chisel Beach, paddle my toes in the sea, paint the sea and photograph the beauty of the world. We are going to a chalet in a field on a farm , sounds sublime ..

As I end my blog Sam has just called me and he has got 78% in his last exam !!!!! Its so hard and I am very proud of him !!! I can’t say that, so I just clap and he recognised my pleasure !!! Yesterday Joe made a new page of his website JosephrigbyPhotogrsphy.co.uk. I like it, it’s very good …look on My Work, and People and tap on Martin Minshall face !!! Ava is blooming, all is well !!!

Blog 34 – The alternative birthday cake

I am 54 now I didn’t think I would get to my birthday but I am still living with MND. My birthday was so special as Ruth had a idea to make me a flower cake as I can’t eat cake. It was made with vivid sweet williams,fragrant geraniums and sweet roses with candles and sparklers !!! It was brought to me around the fire, it was so beautiful, Pete got some fireworks which lightened the dusky sky. Sam, Joe was there, and Alex and Ava who made my birthday so special. My sister Sue came up and Ruth drove to the garden centre and we picked cheerful orange and yellow cheerful Japonica, golden Nasturtiums, delicate alpines and a blush red Clematis . The garden is blissful and am so fortunate to have peace and tranquility.

I am conscious of self pity and complaining about the losses I have to deal with. I need reach out and make myself strong and firm up. Self pity is selfish as I can’t see the struggles regarding my family and friends and I can’t support them if I lose control. It’s acceptable to be sad or angry when I have lost another function like my fingers muscles are wasting and I can’t write as used to, but if I go down the self pity street I will get lost.

We can all take that path as we can feel sorry for ourselves when we have chaos,losses, arguments and disappointments but you need to rise above the black water of melancholy and indulgence. Don’t drown in the misery, keep control don’t compare yourselves to others as individuals who have more misfortunes and people seem to have no adversity.. I think self pity is chained to self esteem, if

I have a short life now and I am can choose the victim role or happiness. I am responsible for my life. I have adversity in the past and I have come through it and I can win this battle too ..it my choice . So I am in control in my MND and I can’t decide what I want to do. Whining just makes me miserable and I make everybody miserable .and I put the control in others hands. I will inform you about my losses as you need to know what I can do and what I can’t do but it’s not self pity .

So tonight I am doing the walk if people will push me, can you volunteer to push me for half an hour as I don’t want one person to push me as it’s hard so I want to get a rota .. You can still walk as you can register at the venue under the Northern Star Team .I don’t know how much but you can ring the fundraising office of St Ann ‘s . If you don’t want to walk or you are busy you can donate to the just giving website http://www.justgiving.com/L-Rigby

We are having an Awareness Day on June 28th June at 6.30 pm we are showing the BAFTA ” I am breathing ” again and we are having a BBQ, plant sale , DVD and game swop, BBQ art exhibition , music and cakes I doing hand massages . The venue is Woodley Methodist Church, Chapel Street, off Hyde Road Woodley SK6 1NF