Anyone who’s read my regular blog will know that I am a scientist. More specifically I’m a geneticist and my long-term goal is to become a genetic counsellor. Because of this, genetic testing is an interest of mine and so I recently attended a screening of the film Do you really want to know? at the UCL Open City Docs Fest.
Do you really want to know? is a documentary about Huntington Disease (or HD) and the genetic test which is available to affected families.
For anyone who doesn’t know what it is, HD is a devastating disease which appears at around age 30-60 and slowly but surely destroys a person’s faculties until they can no longer walk, eat, talk or even remember who they are. What’s worse is that if you have a parent who has HD, there is a 50% chance that you yourself will inherit the disease. There is however, a very simple genetic test which will show without any doubt whether or not someone carries the gene.
The film talked to members of three families who all had very different views on whether they wanted to know their HD status and what knowing would do to them. A surprising number had decided not to find out. (Actually this is maybe less surprising considering they were American families and in the US knowing you carry the gene for HD could affect your ability to find health insurance.)
I can certainly understand why people don’t want to know but the interesting part for me was the reaction of those who did take the test and found out that they do carry the gene.
They had all embraced life and done everything possible to make the most of the disease-free time they have and were seizing opportunities that most of us wouldn’t even think about.
I understand this point of view completely but what it made me think was: why aren’t I doing that? I don’t think I have anything nasty lurking in my genes (one of my grandparents is 92 and still flitting about the place relatively independently) but life is, after all, short.
One of the families in the film had made it their mission to travel the world and try lots of extreme sports while their father was still able to join them. While on the other hand, the number of countries I’ve visited is still in single figures and as for extreme sports, the most extreme thing I’ve ever done is climb a tree.
Having said that, I do live a fairly exciting life, I’m always off to some event or another and certainly since I’ve been living in London I’m rarely short of a story about something interesting I’ve done recently.
But there’s always this feeling hanging over me of waiting. I put things off until later, things like travelling and other experiences.
I want to run a marathon someday but this year I’m not even doing the 5km Race for Life. I want to become fluent in French and learn Spanish but I don’t read any books or even watch many films in a foreign language. I keep thinking “there’s time for that later” but when is later? And what’s wrong with right now?
And I’m not alone in this, I know many people who are the same as me and I’m sure everyone reading this can think of something they keep putting off for no real reason. Does it really take the knowledge that there’s a ticking time bomb inside to kick us into acting on our dreams?
So this is the message I want you to take from this post: live for the moment. Embrace the present. And make the most of now.