Sunday 13 July 2008

Max's story

Max and I have been asked by a National Children's Charity to support them by speaking to the media. They have asked Max to share his inspiring story and include it in a major piece of work they are embarking on this autumn. So I have had my first taste of ghost writing and here is his story!
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When you look at me I immediately appear different. That can be very hard to cope with. My name is Max Lewis and I’m fifteen. I love to watch wrestling, go to the cinema and play with my cat Chutney; I also have Down’s syndrome. Oh, and I’m a BIG Dr Who fan. I don’t know what it’s like not to have Down’s syndrome because it’s something I was born with (I have an extra chromosome), so I guess you could say I don’t know any different. But it can be very difficult having to face every day with a disability. People immediately think I’m stupid and that I can’t do anything and they sometimes stare at me too. That makes me feel worthless, it also makes me angry.

I have low muscle tone, so some tasks many people take for granted, I find hard, like walking long distances, going up and down stairs and holding a pen. I love to chat and have a lot to say, but sometimes it’s hard to speak clearly and I struggle to make myself understood. I can get quite confused too, especially if I’m told a lot of things, I find it difficult to remember them all. I also have a hole in my heart. All the challenges I face can make me very unhappy and frustrated.

But I’m always quick to smile and like to look for the good things in life. I love being with people, and enjoying myself, I have loads of friends and I’m a great guy. Most of all, I love to act. Since I was seven, I’ve gone to the Chickenshed Theatre Group every week. Because people got to know that I loved acting I was asked by Richard Eyre to audition to be in a film called Notes on a Scandal starring Judi Dench, Bill Nighy and Cate Blanchett. I was so nervous and worried about it, but I really wanted to be in the film so I did my very best and showed Richard how much I could act – and I got the part! I was thrilled.

I had such fun during the filming; I even had my own trailer! It was very exciting, but it was hard work and I got quite tired. I enjoyed messing about with Bill Nighy who was very funny and I thought Cate Blanchett was beautiful. Judi Dench was always kind to me and we have a dance together in the film. Being in a Hollywood movie gave me confidence and I feel much better about myself. How many people can say they’ve been in a movie? My mum has also written a book about me called Living with Max. It made me think that maybe I’m ok and that I can have goals and do things. Since then I’ve had a great time, nothing as exciting as being in a film, but everyday I put my heart into whatever I’m doing, life is for living!
Written for Max by his mum – Sandy Lewis.

6 comments:

wardy2 said...

Hi Max, I would just like to say you sound like a fantastic young man, you have so much life in your eyes and you can see the character and determination in them! You should be very proud of everything you have done, you are amazing!
Best wishes x

andypandy said...

I finished reading your story at 3am this morning and felt that I had to contact you. I found it funny(not in a horrible way) moving and interesting.

2 years ago I became bed-ridden due to a gradual neurological condition and spent the next 18 months in bed, partly due to major spinal cord surgery and partly due to social service refusing to supply a stair lift, oh and mainly because a consultant thought he knew better than me and assumed my symptoms were all in my head so didnt bother to read my MRI scan, so missed my condition !(1 am 36 yrs old), so I can understand to some degree what its like to fight the system, but of course you have fought it a lot longer than me and to be honest, I dont know how you keep doing it, well I assume for the love of max, but it is so hard isn't it ? I am finding it hard to keep fighting social services and the NHS month after months after month
May I ask how Charlie is ?
Thank you for telling your story. Love to all your family

Sandy Lewis said...

Hi Wardy2, Jo,
I'm so thrilled that you enjoyed the book.Thank you for all your lovely comments. One of the reason's for writing it was to shout out how it really felt for me and it's a big comfort to know that I'm not alone. We seem to be on the same page on many things, Kez sounds alot like Max!Very best wishes to you and all your family, Sandyxx

Sandy Lewis said...

Dear andypandy, I was deeply moved to get your lovely comments about my book. Your story seems quite remarkable and you have my every sympathy and respect, with your condition and your relentless struggle with the system. I can't begin to imagine how it must be for you. I guess we all carry something,with some people's burdens far greater than others, but you're right, it is very hard.Charlie is growing into a wonderful young man, thank you for asking, but he does have the 'Kevin' years to get through! love back to you, Sandyxx

howie said...

Hi Max just read about you in my wifes magazine and we both are reading the book your mum sounds like a great lady keep up the singing you have a gift and determination to get on
best wishes
gloria & howard

Sandy Lewis said...

Dear Gloria & Howard,
What a lovely message! A big thank you & I hope you enjoy the blogs.
very best wishes
Sandyx