by Benjamin Png
Finally! It has been a really nerve-wrecking but exciting past few months leading up to this publication and I must take my hat off to the Dreamcatchers and to Kar Wai who have been making great things happen. The first question that must be going through your mind now would be what does the title of the newsletter mean? It is basically one part of our tag-line – I Have a Chronic Illness, So Wad? And “So Wad?” is the first newsletter of its kind, written and contributed entirely by the patients. And this tri-annual newsletter has big plans!
Chronic illness in children and youths is a very unfamiliar concept to many and sometimes unbelievable as well when people hear about their stories. We catch a glimpse of how they and their families live their lives on shows from time to time, but television can never capture a very important part of the entire illness experience, that which is time. A show can last about one, maybe two hours, and we go on to the next television programme.
But for these patients, living with a chronic illness is something that they, together with the families, face bravely and strongly each and everyday, for every single minute of their lives. They grow up with it, go through common life experiences and milestones with it and their lives go up and down with it as well.
These kids have shown tremendous greatness and wonder in the way they go about living their lives and we hope to capture all of this in this publication. Going about doing ordinary things with extraordinary spirits is the one thing that the kids do extremely well and it must be documented somewhere to give testimony to the human spirit. Extraordinary spirits because these ordinary things are sometimes done with difficulty because of either the medical condition or the treatment. And they write extremely well too and these writings are one of the most entertaining bunch of words put together that I have ever seen.
“So Wad?” captures the essence of what this newsletter wants to achieve, of shifting both patient and the families’ perception of chronic illness to understand that you can have big hopes and achieve great dreams even with a chronic illness. I hope that in time to come, we can all look back at where this publication has come and at the same time, how everybody’s lives have woven and intertwined and marvel at what an amazing time it has been.
Please enjoy yourselves and when you are done with this, I urge you to pass it along to another person and urge them to do the same when they are done reading as well, with the purpose that we can all start doing our ordinary things with the same extraordinary spirits. The people that put this together are super great, and you can be super great too.