Issue 89, June 2005
by Chris Lock, AHDA
During our lifetimes we observe, listen to and filter information that one day may have a bearing on our future or the future of those we love and those we serve.
Recently I have come to savour the decision making process, which in today's hectic life is not given the time it deserves. Most people do not allow themselves the opportunity to research, understand and weigh facts before racing forward to the next calamity.
My involvement with Huntington's has highlighted this more than anything else in my life. Decisions I made twenty years ago will, if I am not careful, haunt or help me twenty years into the future. And for us, we see that Huntington's can sometimes manifest itself in the early stages by affecting the decision making process.
Until this time arrives, we go on making what we think are simple decisions but which underneath can be much more complex than we can comprehend because we have observed, filtered and sorted to such a degree that we are in fact relying on semi automatic decisions as we go about our daily routines.
But big decisions, those that have a twenty-year impact can be elusive and hard to spot in amongst the daily clutter and the one that is ringing in my mind is one we all must face. Am I ready to stop relying on my own decisions? When will I know that my decisions are no longer balanced and considered? When, I wonder will my decisions start to become a little hazy and frightening to those I live with, or those people whose every pay-day relies on the decisions I make.
Huntington's to me, is a huge motivator and simply polarizes ones thinking and ultimately ones life and like many aspects of our relationship with this gene, this to me is an early warning that I must take stock and ensure that I am ready to begin to rely on those whom I love and trust to take care of those decisions that I think only I can make.
So what does this mean to you and I and those we care about?
Simply, see Huntington's as an opportunity to step forward with courage and take time to make good decisions. Decisions that will help you and your family in the longer term so that those hasty decisions made later under pressure are not regretted at your leisure.
Decisions such as the correct saving regime, education plan, career plan and so on that will give you the apparent poor sufferer of Huntington's one huge advantage and opportunity. Simply you will be ready to do a few things others won't. You will be ready to commit to some level of help in the Huntington's community to help them prepare for you when your time comes. You will be ready to help others who may have been caught off guard and were not ready. You will be ready to stop working a little earlier, to take a more leisurely pace and savour the miracle of life. And you will progress with Huntington's in a much less terrifying frame of mind and you will have done your best to be ready.
Then on that unimaginable day, when you get a clear message from those around you that decision making is no longer your best skill you can say, excellent, I am ready to do a bit of fishing or paint that masterpiece or what ever hidden talent you can bring to the surface to keep your energy and focus alive and enable you to enjoy the decisions you have made.
This they do not teach you in school and people make millions of dollars by teaching this simple fact. No, it was not until you get the message that you have the gene that your time focus alarm bells ring and you think, whew that was close because I still have time to make a few decisions to enjoy every moment I can going forward.
I imagine that my view on Huntington's may be a little different from others. But in saying this I am hoping to excite a degree of renewed vigour and focus so that you slow down time and make the best decisions you can knowing that when that day comes when you must trust others, that they will be in the best position to return the favour.