Thursday, August 28, 2008

Words to Learn From: I Have Come to Live Before I Die


The guy in the photo with me is my dear friend Tony. Tony is terminally ill with Motor Neuron Disease. Nothing much moves anymore, except his face muscles and the muscles allowing him to breathe.

His mind is crystal clear. Sharp.

Tony has been in hospice for 6 years, outliving every other patient around him. He has to be fed, bathed, toileted, moved, dressed. He relies on others to assist him 24/7.

If ever there was a case for why we should allow euthanasia based on the “quality” of life, Tony should be euthanasia’s poster boy. But that would be a big mistake, because Tony made a decision way back right after he learned his diagnosis – that living was important, not dying.

While I was in South Africa recently, we spent some time talking about his condition and his thoughts. He is a resolute and realistic man. He’s decided what will happen when he can no longer breathe.

But that’s not yet. He is not, by any stretch, yearning for death.

That’s not all. Not the half of it. He has produced two very impressive DVDs educating people about his condition. He routinely teaches batches of medical students, nurses, and other support personnel about his condition from his personal point of view.

There is a steady stream of visitors, often bringing his favorite goodies.

He follows world affairs very closely. He likes to sit in his chair and have a cocktail or two. He is articulate. His jokes are funny, his humor dry, and, occasionally, quite dark.

But not sinister.

He’s writing an autobiography. He read me excerpts. It’s charming, funny, and embodies not a wisp of bitterness. I’ll bet he’ll finish it. He wants his book to be a testament to Tony the person, no holds barred. Or as he puts it,  “the good, the bad, and the ugly.”

He considers himself a fortunate man, all said and done.

If you ever want to see another side of someone with a severe disability, look at the photo.

This is not how the pro-euthanasia crowd wants things to be.

In a major piece in Johannesburg’s Star newspaper last June here’s how Tony described moving to hospice:

“I Have Come to Live Before I Die”

Take that, pro-euthanasia advocates. 

3 comments:

TRS said...

Very moving. You have to admire someone who lives life to the fullest in a condition in which many (including myself) would likely wallow in self-pity. Those who can claim they are victims but refuse to do so are an inspiration. Thank you for sharing this story.

Mark said...
This comment has been removed by the author.
Mark said...

Thanks, trs. I think we don't see enough of this side in the disability assisted suicide/euthanasia battles. Tony would be the first to admit that his illness has impacted him immensely, but he is adamant that it was his choice to live that made the difference.