So, I have had the great pleasure and honour of
being asked by Anthony to contribute to his blog.
The focus of his blog is Optimism, he IS in an optimist, and as such goes against the perceived convention of his condition.
“Surely I should feel sorry for myself?” or
“Why has this happened to me?”
All the usual feelings that come with a diagnosis or deeper understanding of Duchenne. For new Duchenne parents like Donna and I these are all natural feelings and for some they last for a long time and for others not so long, for most they never go away and are just there like the dull ache of an old deep rooted injury that flares up into something rather painful from time to time.
However, those who know me and my views on life, Harrison, Harrison’s Fund, and Duchenne will appreciate that Anthony and I are alike in mindset.
Live life to the fullest, get involved, forget limitations, especially those imposed by others, and make the most of life….it’s there to be lived, so lets all get on with actually living it.
In reality for us though, explaining this concept to a 5 year old is not necessarily straightforward beyond always trying to be a role model for Harrison to look up to. Not a goody goody two shoes though, I’ve never been one of those, and have always enjoyed pushing the envelope of enjoyment, but encouraging Harrison to not give up, to enjoy life.
The pursuit of excitement, joy and pleasure is something I will fight to my last breath to ensure is not taken or kept from him.
I had the great pleasure on a recent trip to the US for the annual Duchenne Alliance Conference to meet and talk to another inspirational optimist, John Crowley. In 1998, Megan and Patrick, two of his children were both diagnosed with a genetic disease. This often fatal neuromuscular disorder known as Pompe disease was so rare that no company had yet developed a medicine to combat it either. John raised more than $100 million dollars to launch biotechnology companies to develop the cure. There has even been a major motion picture made , Extraordinary Measures, about John and his family starring Harrison Ford. This guy does not know how to give up!
I talk about Harrison’s Fund and Harrison’s condition a lot and with anybody who asks, it’s what I do, it’s my passion. It’s a pretty devastating condition, it breaks up families and it takes the lives of brave, incredible children and young people far, far too soon.
BUT for me, self pity and wallowing in the pain relentlessness of it all is just not an option, we have still got a bright and beautiful mind to nurture, an uplifting personality to foster and a determination to galvanise.
Optimism for me is a mindset, a stubborn mindset in my case perhaps, but a mindset all the same. I choose to be optimistic. I choose to believe that I, and all those optimists that work with us…
WILL make a difference AND change the world. #maketime
Do you share in Alex’s view on life? Comment below to answer.