I am told adversity brings the best out in people and apart from me being a ‘moody, grumpy, gruffalo’ I think this is true of those I know either through work or the place I live in. It was my birthday recently and being on the receiving end of so much love, care and generosity got me thinking about the community I live in, and the incredible warmth, kindness and support we as a family have got from our little village community.
We moved down to Somerset only a week after I was diagnosed with MND and so the people we have got to know and make friends with have only known me when I’ve been ill. I worried about them only seeing my disease and my progressing disability, I was concerned that they would not know what I was like before MND and I didn’t want to be defined by it. I needn’t have worried as the village is a very friendly, open minded, sociable (boozy!) and inclusive community and we as a family feel very lucky to have chosen to live here. Sadly, there is another reason why we have been welcomed and supported so completely. I am not the first person to have lived with MND in Beckington – I find this shocking that such a rare condition could have affected another family in a place with a population of a few hundred. We have taken great strength from the love and friendship shown towards us by the Sweeney family and seeing their amazing children helps us to understand that our children will be OK after I am gone. It’s comforting to know we are not alone when coping with MND.
I now feel the need to publicly acknowledge and thank to groups of people who have been extremely helpful and generous towards us and the MND Association. Beckington Cricket Club is a successful, improving, ambitious and very friendly cornerstone of the community and they as an organisation and as individuals have shown amazing compassion towards me and my family. They are always trying to raise money to promote youth cricket in the area and despite this have found a way to contribute funds towards MND research – thank you ‘Badgers’!! Secondly, I would like to thank the ‘Beckington Players’ who have chosen the MND Association as the recipients of this years ‘Old Time Music Hall’ Gala night. The music hall is in it’s 25th anniversary year and is a highlight of the social calendar, this year should be another cracker and hopefully very lucrative in terms of money raised for the MND Association. Being included in these events makes us feel as if we have lived here for ages, although I reckon you have to have lived in ‘Zummerzet’ for at least 25 years to be considered a ‘local’.
Beyond local news I can now happily confirm that the ‘Alistair the optimist’ album is now finally mixed and has been sent away for mastering. I have just finished listening to the ten songs in their proposed running order and I reckon it sounds pretty good. With catchy tunes, interesting lyrics, a warm sound and a banjo (everyone smiles when they hear a banjo!) – there’s something in there for all the family – unless you like metal, jazz or dubstep! Hopefully a release before Christmas is still possible and I will keep you posted as to how you can purchase it nearer the time of it’s release.
Right, I’m off now as typing this with weak hands and fingers has taken ages. Besides, the kids have just come back from school and it’s time to build a den!
Alistair The Optimistx
pretty gutted you decided against the dubstep remix to be honest. x
posted by lucy (sister variety) on November 17, 2011
Alistair it is quite frightening watching you a couple of strides further down the road than me but on the other hand it gives me great optimism that until the last we MNDers can live a happy, fruitful and rewarding life to the end x Motor Neurone Together We Stand (fb)x
posted by Maria on November 17, 2011
Awesome mate. Big shouts out for you in Manor Park tonight on the last night of the play. Around £400 raised in 3 nights. Will be sending a cheque when it can get through the matrix known as the school accounts! Love you and missed you in the play xxxxx
posted by kate on November 17, 2011
Hi Alistair
So glad you finished your album. I hope it does really well. My family wish you well in your ongoing battle with MND. Our thoughts are with you and your family. My youngest son was second from the right of the photo of the climbers on Kilimanjaro, which was on your blog. We lost his dad to NND, 24th November 2008. Keep fighting.
posted by Val Collins on November 21, 2011
well done on completing the album mr banks
you are doing fantastically well and you are still such an inspiration
my whole family wish you well in your constant battle
keep on fighting sir
posted by Hayley Wheeler on November 22, 2011
Hi Alistair,
I follow your blog, and others, my partner Gary was diagnosed with Motor Nuerone Disease, two years ago.It started in his right foot, and he was due to have a back operation, and just prior to Christmas 2 years ago, he received the news that he had A.L.S.Gray like you is amazing, I am commend the bravery that you possess. We have two wonderful daughters, Samantha nearly 16yrs and Courtney nearly 14yrs. They are so good , although it’s hard for them,we have many alaugh as a family, and have done so much, perhaps things we would never have done, since Gary was diagnosed.There is two ways you can deal with this, one is to stick your head in the sand,and be morbid, or make the best of what you have as a family. We are very open, and the hardest thing for me, was answering the questions, that teh girls had, however as hard as it was, I knew I had to stay strong, as they wouldn’t come to me again if they upset me.They have a good understanding of M.N.D as a mum at the school died after 5 years with the disease.While studying as a Pre school teacher, I supported a lovely 36yr old with A.L.S. What an amazing guy, when I started with Rob, I had no understanding of the disease, however 20years on I would never have guessed that I would be dealing with it head on. Rob was really bad when I started with him, he had a two year old and a new baby,however he shared the same Occupational therapist as Gary, and it was pleasant to hear, he lastet 11years after I left, which was incredible.I wish you and your family all the best, as we totally understand what you are all going through. You are amazing. Take good care.
Iris and Gary York New Zealand
posted by Iris York on November 24, 2011
Well done geting the disc off the ground…. so pleased your move to somerset turned out so well…..
I shall never stop being an incurable optimist-I am an Association Visitor and am constantly impressed with the courage and resilience shown by people living with MND….I learn such a lot from them all and will tie myself to the railings if necessary for the cause!!!
posted by Julia Franklin on November 24, 2011