Living With Dignity

This morning the Supreme Court of Canada ruled that a law that makes it illegal for anyone to help people end their own lives should be amended to allow doctors to help in specific situations. It is a landscape change in those of us living with ALS. The court gave the legislature a year to come up with a legal framework where people with terminal illness will be able to choose the manner and timing of their death. I don't like to call this debate "dying with dignity"; there is nothing dignified in death. I prefer to call it "living with dignity", right up until that undignified moment when I die.

Shortly after the news hit the streets, at around 10:30 AM, I got a call from CTV News here in Calgary, asking me if I could do an interview about this ruling. Of course, ever the media hound, I said yes, asking them if we could do the interview at around 1:00 PM, giving me a bit more time to sleep. They arrived shortly before 1:00 and spent about an hour with me, asking me about ALS, my views on the ruling, and what impact it would have on me.

It was an interesting interview, one which I will want to see for myself. You never know how the media will cut and clip. CTV Calgary plans on putting a short version on during the 5:00 PM news, with a longer version on during the 6:00 PM news. I will try to watch both of them but I am not sure I will be home at 5:00 PM. Fortunately both will be online on the CTV website later this evening. The reporter, Shaun Frenette, is going to email a link to me.

This whole process is both exciting and exhausting. It's getting more and more difficult to do the things they want in an interview, stuff like background shots where I roll down the hall or into my bedroom. My arms hurt with all the rolling about, the lifting up and putting down of things, all so they can use a couple of seconds on the air. It's the nature of the media to have lots of footage and use only that which completes their narrative.

Of course there were the questions about death and dying, the standard questions about ALS, and the usual one where the observation was made that "I look great" so how could I want to die. It gets hard sometimes, to continually tell people that ALS is a disease where you look fine, in many cases right up until the end stage, until suddenly you need breathing assistance and feeding tubes and personal care. I'm not there, but it is coming, regardless of how I look.

I will watch the interviews tonight. Once again I will be reminded that I am somewhat of a poster child for ALS. I have it, it is taking my life away from me, yet here I am living to the fullest while I still can. The real message I want people to understand is that this disease will kill me; I can die in an undignified, harsh manner with tubes and nurses and doctors all round, or I can die with some semblance of peace and dignity, here at home. I simply want the ability to make that choice when the time comes.