Welcome to my blog!

Hi there!

This blog is related to my autobiography DMD Life art and me plus there will be non related posts. I have the disease Duchenne Muscular Dystrophy and that has left me in a near paralyzed state, I wrote this book in 10 months using one finger clicking one mouse button on one on screen keyboard! Be a follower by clicking in the box on the right and you'll get every new post I make. Feel free to join in with your comments and enjoy!

Ian,

Author and Digital Artist

Sunday 7 February 2016

Constant Reminders


I like watching cooking shows or people doing things like building or walking or generally doing something productive. Which strikes me as strange because I cannot eat normal food, move my hands further than a few millimetres and definitely can't walk. Whatever I see everyday, there are constant reminders of what I'm unable to do. Most of the time I don't let the negative get in but sometimes there's a huge pang of “I really want to try doing that”, or words to that effect.

I had one of those moments a few days ago whilst watching something on social media. A young man was discussing his love of calligraphy and penmanship using actual writing implements he made himself. He was lamenting how technology is destroying traditional handwriting and argued that one shouldn't be at the detriment of the other. He explained the process of handwriting actually helping people to learn more effectively. I was really inspired but then slightly crestfallen because I couldn't do it myself.

He took ages completing school work because of this 17th century-esque script. When I could write by hand, I took ages completing my work because my muscles were failing and I was getting pain in my whole arm. I finally had to stop and have someone write for me which was a relief and simultaneously a tiny bit heartbreaking. I'm very thankful for computers and on screen keyboards which is enabling this post but technology has its limitations.

Another similar feeling of wanting to do more hit a few weeks ago whilst attempting to do some art on my laptop. I was trying to compose an image of a field of wheat with a tree in it. I just couldn't do it to the level of detail I wanted and that familiar arm pain was nagging away as well (which it is now). I was deflated and getting depressed and just couldn't do any more art that night. I bounced back with a lot of faith and that urge to do something firing me forward. I try to keep doing things I can do until eventually they go too. I'm sure there'll always be technology and something to do, but the straitjacket gets ever tighter and then it'll be me versus my mind when my body can't do the things I'm good at. Thankfully I have great hope of an astounding future where if I make it I'll do more than I can dream of and that keeps me going!




More on a range of subjects can be found out in my book;



EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857

All links available in my website here; http://duchennemen.net16.net/buymybook.html

My art can be viewed here; http://www.redbubble.com/people/thebigg2005


Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time

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