Tony Lived Before He Died

Two years ago, on a visit to South Africa, I met a most extraordinary man. Tony had lived in a hospice for several years completely immobilized by Motor Neuron Disease, except for being able to move his eyes, talk, and swallow.

Tony’s extraordinariness didn’t come from his disease, but how he coped with it. It wasn’t possible to ignore that he was in a hospice, or that his disease was degenerative, and that the room in which we talked would be the place of his death. However, that all faded into the background very quickly. We talked about old times (we discovered that we had been raised in the same neighborhood), politics (we argued quite a bit, as I recall), and of course, sport.

There were jokes, both light and decidedly dark while Tony enjoyed a cocktail or two.

He was a gentleman.

I visited Tony as often as I could, but soon it was time to return to the US. I vividly recall my last visit. Tony had a beer and toasted our friendship. I could tell that he wanted me to linger, and I did as long as I could before going on to a dinner appointment.

My last words to Tony were: “I promise you, I’ll see you again.”

I revisited South Africa this summer, but Tony was dead.

Several months ago, I learned, the final deterioration began, but Tony was ready for his death.

Quietly, over a period of about three weeks and at the end surrounded by those he cared about most, he succumbed.

I was several months too late to fulfill my promise.

I’ll bet Tony’s chuckling at that.

“Timing,” I think he would have joked, “is everything.” Or perhaps “Thanks for nothing Mark, a miss is as good as a mile!”

Tony didn’t volunteer for his terminal illness. However, in his witty biography, “Happy Chappie,” finished just before he died, he explains that he made the decision early on after diagnosis to live with his illness until he died rather than waiting to die because of his illness.

He’s bequeathed to us a profound lesson in what it means to be human, and how he coped, in “Living With Motor Neuron Disease.”

Go watch it. Share it.

That’s what Tony would have wanted.

The New Reality TV: Assisted Suicide is "Love"

Well Jack Kervorkian must be proud, as must the 58% of Washingtonians that celebrated their win in making assisted suicide legal in their state barely a month ago.

You’ll recall that Kervorkian started a trend in making suicide a living room experience when he filmed killing Thomas Youk in 1998, and paraded the grisly deed on CBS’ 60 Minutes a few weeks later.

It’s baaack!!

Britain’s newspapers are all abuzz today over the planned screening on the Sky Real Lives channel tomorrow night of the documentary Right To Die - The Suicide Tourist, which shows, in part, the assisted suicide of 59 year-old Craig Ewert.

Ewert, from Britain, was diagnosed with motor neuron disease a while back and given a few years to live. The disease progressed fairly quickly to where he was confined to a wheelchair. 

(Sidebar, my good friend in South Africa, Tony, who also has motor neuron disease, and is in much worse shape than Ewert was, has a vastly different opinion than Ewert).

No worries, mate, Switzerland’s Dignitas can help. For a £3000 fee, of course.

Ewert made the decision to end his life before he was in a position where he couldn’t kill himself. As he put it:

Once I become completely paralysed then I am nothing more than a living tomb that takes in nutrients through a tube in the stomach - it's painful. . . . Let's face it, when you're completely paralysed and cannot talk how do you let somebody know you are suffering?

To avoid this difficult situation, he travelled to Switzerland accompanied by his wife.  (Assisted suicide is illegal in Britain). The documentary shows Ewert, his wife at his side, drinking a fatal dose of drugs and using his lips to press the button (helpfully held to his lips by his loving wife) that stopped his ventilator.

He was dead in less than an hour. Just ike that.

Two points among many, if I may:

One: All the buzz is about Ewert’s suicide on TV, there, for all to see, rather than the act of suicide itself, which the British media regularly, and fawningly, presents as a perfectly reasonable thing for people to do. Methinks they protesteth too much.

Two: As with the Dan James case a few weeks ago (courtesy of the same diligent, deadly, Dignitas) the spin of the media is this:

What a shame that this poor man had to kill himself so far from his home and the comfort of his surroundings, without his whole loving family by his side to hold his hand and hug him as he slipped away from his pain and torment. What kind of barbaric society is Britain that it still has laws outlawing this ultimate act of loving sacrifice?

Bad, bad, naughty law. Needs to be changed.

OK, maybe it’s just me, but we’ve obviously moved to seeing assisted suicide as a good thing, and laws and people that oppose it as those nasty intolerants.

Interesting, very interesting.

Speaking out Against the Pressure of Being Required to Die

Well, it didn’t take long in Britain.

It’s already a fact of life in the Netherlands.

Feeling that if you have a disability you should somehow feel guilty for not wanting to do yourself in, that is.

Good for Sue Garner-Jones. We need more people with disabilities like her to speak out, to join her and my friend Tony.

We, and they, need to speak out very, very loudly.

For 34 years, following an accident, Sue has been in a wheelchair, pretty much paralyzed from the neck down with only very limited use of her hands. She receives 24/7 care from her 72 year-old mother.

She’s done pretty well along the way. Sue has a PhD, is a part-time lecturer at Liverpool University, and helps out in her community by tutoring school children in English.

She’d had enough after reading about all the fawning press accounts of the assisted suicide of Daniel James. Dan, you’ll recall, was taken by his parents to Switzerland from England where the Swiss assisted suicide Nazis, Dignitas, were happy to help kill him.

Here’s part of what Sue said:

People make their own decisions about how to live their life. But there’s a lot of talk about bravery and courage for people who were opting out of living their lives. I didn’t like the inverse of that. To call this action ‘brave’, ‘courageous’ and ‘selfless’ implies that those of us who battle on are ‘cowardly’ and ‘selfish’, which is unfair and untrue.

Great point, Sue, but that’s what it’s soon coming to in the formerly glorious seat of Empire.

But it’s hardly news, unfortunately.

In the Netherlands, many elderly people carry identification or wear bracelets that read if I am hospitalized, do not euthanize me or I do not request assisted suicide. Not that it means much. There’s very strong evidence that each year in the Netherlands hundreds of people are snuffed out anyway, even if they have never talked about, considered, or requested assistance in dying.

In a nutshell, many people in the Netherlands feel the seeping pressure to get on with it and die – as a community service, of course. Now it's Britain's turn.

Have a disability? Choose "a loving, dignified, and easy death" – or else.

Can the US be far behind?

If you read this blog, you already know the answer.

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.