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
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
