Last week we (Kev, Noah and Luc) went to a screening of a documentary called Twitch. This documentary follows 18 year old Kristen Powers as she undergoes testing for the HD gene. Kristen was at the screening and Luc was very excited as he had only recently watched her TEDxTeen talk.
WARNING: SPOILER ALERT. I GIVE AWAY THE END.
As a family, we had admired Kristen’s attitude from her TEDxTeen talk. The idea that you have to live for today because you don’t know what tomorrow will bring is one we have tried to instil in our boys. Along with the concept that you have a choice to make a positive impact on this world or not. Your actions and not your words are the thing that will determine this. Here is a girl, threatened with her own mortality who chooses to do good, and leave the world a little bit better than how she found it. I hope that this is what I am doing through my career in education, it is what Kev was doing through his and continues to do through his relationships. It is what we hope our boys will choose. They seem to be on this track, currently it is through their music.
Like Kev, Kristen’s mum did not know about her family’s genetic history and her mum suffered from misdiagnosis as Kev’s mum did (a post for another time I think). Like Kev, Kristen was tested at a young age. I have written about this before: Would you want to know?
But Kev’s test was positive for the HD gene. It was interesting listening to Kristen talk about her choices after the screening. She had made a list of things that she had wanted to do if her diagnosis was positive. She did not want to waste any time. Interestingly, she is following the time frame she set herself despite her outcome.
This got me thinking. Would Kevin have done anything differently if his results were different? It is my honest belief that the answer is no. Being faced with a disease like HD and its long term outcome makes you look at life differently regardless of your gene status. Knowing that life is a 50:50 lottery in all things, not just your gene status, changes the way you view life.
This can bring about positive choices or negative ones. But are they different to what they would have been without knowing or with a different genetic outcome? My confidence in my answer, no, strengthens everyday.
Another thing that struck a nerve was Kristen’s adamant stand against having children if she was gene positive. Although, she did say that even now, she is still considering whether she wants a family – giving further evidence to my theory that nothing would be different. I would have liked to ask her if she thought this decision may have been different if her mum had known about HD before she showed signs? If she would have a different opinion if her mum had been appropriately medicated from the start and her psychological symptoms were controlled better? Hindsight and all that jazz.
As you all know Kev & I decided to have kids. Kev had grown up with friends who did not make it to adulthood due to disease or accident and we knew that babies don’t come with a written warranty for 80+, happy, healthy years. The decider for us came when I asked Kev: if you had a choice to be born, live a life then suffer from HD or not be born at all, which would you choose? Which would you choose?
Kristen also talked about relationships in her documentary and in the Q and A afterwards. She said several times that she would not want to ask someone else to care for her when she could not care for herself. This sparked a nerve with me. Kev had often said this to me after his positive gene test. But I would like to say to anyone out there with a degenerative disease the same thing I said to Kev. YOU DON’T GET TO ASK! THE PEOPLE IN YOUR LIFE GET TO CHOOSE. All life situations have choice, you can not attempt to control the choices of those around you. They have a choice to go or stay. You don’t have a right to choose for them.
Which brings me to the point of this post. This year, I have been trying to take “I have to” and “I need to” from my vocabulary and replace it with “I choose to”. This has led me to question my choices. How many of the choices we make are determined by who we are and what we have faced or observed others face? Would these choices change if you knew how and when you would die? Should it make a difference?