A friend has encouraged me to share the story of the Patience Project, what it is to date and then to continue on with the story as it unfolds. His wise advice was to start a blog. One that has no preconceived idea as to how it would be consumed or used... just be honest and put it down on paper! Well here it is.
Making a commitment!
The Patience Project has been created to honour a commitment made mostly by myself, but also by my wonderful family, to Liam our son and brother. Before his death in December 2016, aged 16, Liam asked us to"spend some time trying to make the lives of teenagers who are diagnosed with a long-term illness easier." It would have been easier for us if he had been more specific but he has left the challenge up to us.
What I have come to realise from past experiences is that I am the type of person that can start anything and foster others to be enthused by the same and then to help them excel at making it happen – but also that I have never completed anything. The world needs risk taking starters and equally needs the risk averse finishers.
I don’t know if fulfilling our commitment to Liam will take three weeks or thirty years – but I do know that it will be an extremely rewarding experience no matter the outcome. In order to deliver on our promise I have decided to extract myself from from my current profession and I will 100% focus on the Patience Project.
So what is the “Patience Project”?
During Liam’s cancer treatment program we spent considerable days and nights in the fantastic New Zealand Starship Childrens Hospital and I made the following observations (in no particular order and no particular subject)…
✗Independence taking is the crux of teenage hood
✗Removal from your peer group can severely affect your ‘coming of age’ – social maturity
✗Illness advances mental maturity at an outstanding rate e.g. 13 year olds start thinking and acting like 18 year olds overnight
✗Survival rates are rising rapidly so re-integration is far more likely
✗Out of sight is out of mind, especially for teenagers
✗Mental willingness does not equal physical ability e.g. compromised immunity
✗Its not the education that is missed , it’s the mates!
✗Internet technologies help e.g. Facebook, Instagram but aren’t immediate etc
✗Despite not wanting to go, school is a social magnet for teenagers
✗Teenagers just ‘want it now’
✗IIlness does not distingush between race, religion or creed
None of these observations are revolutionary, but sometimes we need a situation to reinforce the importance of them. The observations came when interacting with other teenagers who were in similar circumstances to Liam.
What stood out to me from my observations is that a lot of them were observed because the patient was excluded from normal day-to-day environments, particularly education.
So, the Patience Project is an informal project, by two parents, attempting to make the social exclusion of long-term illness more inclusive.
I am a technologist, so given the stated goal, I naturally jumped to how this might be achieved using flashing LEDs and high speed computers. Here is where my brain went…
“What if we could somehow give the patient the ability to be included into a remote environment when they were able?”
Where technology is headed to achieve this is with virtual reality. So…
“What if we were to place 360 ° cameras in classrooms and give the patient a virtual reality headset and allow them to be included in the social and learning experience in real-time?”
I think that would be bloody awesome! We are therefore going to make that happen and just see where it takes us.
There is no shortage of people and organisations willing to help make a difference to teenagers who are diagnosed with a long-term illness. A plan is unfolding which will be executed on in early 2018. In the meantime I’ll do what my friend has encouraged me to and just blog my thoughts, whatever that means!