day one hundred + eleven, again

Dec 3rd, 2012

Just saw the front page of the National Post.

The Rasouli case.

This is horrible.

From every perspective.

The family, the doctors, the scientists, the hospital, the country.

Getting at the question of what is ‘consciousness’.

Effectively, what is the quality of life?

Really?


Really.

Limited brain activity, not a fully functioning mind locked in a frozen body, according to a report from a leading neuroscientist.

But what happens when there is full brain activity, a fully functioning mind locked in a frozen, declining body.

ALS.

With deference to my sister who wanted her illness masked and hidden, I haven’t said much over the last 2 or so years.

But I need to speak out now.

For my sanity and that of my family.

Because her death is not in vein.

I am struck by the head of IBM Innovation I met at GTEC a few weeks ago in Ottawa.

He said that Canada’s database of health care information is an amazing treasure trove of knowledge in the age of big data.

That’s why IBM is making major, private sector investments in this country.

Good for IBM.

I just wish that the Rasouli family and ours had more support from that those very governments, that we have paid taxes to for, in our case, years and years and years.

Instead, its 6 hours of weekly care in Ontario.

The rest paid for by us, the deceased’s family.

A working class family from Sudbury whose estate kept my sister alive far beyond what she should have suffered.

Then the Toronto CCAC case manager told me later that it was the first time they had an ALS patient die at home in such good care.

And that was because of an amazing Jamaican care giving team.

More than 7 people.

Yes, our Canadian Charter of Rights and Freedoms offers us something.

Humanity resides in their equation.

I wonder if it does in Canada’s?