Live or Let Die

Why doesn’t everyone with ALS choose to Live?


Some people, I’m told, are in denial and don’t want to even talk about having a PEG. That’s tragic. Not least because they are unlikely to be able to remain in denial as they starve to death.

Some people, I’m told, view having a tube attached to them as the First Step toward profound disability. And they can’t bring themselves to take it. Fine. But absurd. The first step actually happened when they noticed their very first symptom of MND and didn’t know what it was. There is no relevant symbolism to accepting your first life-preserving procedure – other than that you are still very much in control. People without MND have PEGs all the time. Many stop using them when they are no longer needed. Unless there’s a medical breakthrough, those of us with MND will carry on needing them. But acting as if having a PEG is some watershed moment risks seeming, let’s be honest, a little melodramatic and self-indulgent.

And some people, I’m told, in effect choose to die through starvation. And some, refusing invasive ventilation, choose to die by slow suffocation. [Don’t worry, by the way. Harsh though I’m being, if for some reason you do elect to go in one of these ways, they’ll give you wonderful palliative care so you really won’t suffer. But, don’t say I didn’t warn you: You will miss out on what could have been a lot more fun and fulfilling that Death.]

I not only find it incredibly sad but also incredibly frustrating that anyone would feel the pressure to unofficially kill themselves in these ways basically because they see no Hope. No reasonable alternative. No other sensible option. I WANT them to see hope, alternatives, options. I want them to feel they have a CHOICE. I passionately believe that what they then DO with that choice is totally up to them. I utterly support the right of people to choose death. But choice requires people to believe there are serious alternatives for them to weigh up. Otherwise it’s nothing more than a fait-accomplis – a sham ritual of decision making whose outcome was never really in question. I want people to feel that they genuinely have choices. And many, many people today simply feel that, in practice, there is effectively only ONE.

Consistently, I am told that people elect not to have PEGs or Ventilation because, allegedly in full possession of the facts, they simply don’t want to go through – or carry on going through – what they consider to be a torturous end game. To me, this is way beyond Tragic.

And yes, I am painfully aware that it would supremely ironic if one day I myself chose to give up. But, let’s face it, for me that too would be way beyond Tragic. So, my verdict still holds.

For a start, I worry that many people making this decision may in fact be clinically depressed. Depression is a most awful illness. Far worse than ALS. It’s also a lot more than just ‘feeling sad’. It’s a medical condition. It does not respond to admonitions to “pull yourself together”. And it’s not a good state in which to make balanced judgements about life or death. Yet that is not the main reason I worry.

To me, the ultimate tragedy about all this is why these people get depressed in the first place. “Because they’ve been diagnosed with ALS!” is an obvious reason. But that is not the reason, as far as I can see. Instead, the reason is because the horrific way that the ultimate prognosis of ALS is routinely portrayed can make death seem like a blessed reprieve from the alternative of suffering a Living Death – fully-aware yet unable to move. Maybe for years.

And on top of that, some worry about the enormous burden they’ll place on their loved ones. In some countries, they worry about the emotional and the financial burden. [Don’t even get me started on the obscenity that financial considerations should ever come into this at all.] For some people, already scared of what they’re facing, it almost feels like an act of love to sacrifice themselves for the good of those who remain.

In the past, all that terrifying portrayal was largely true. Who knows, back in the Bad Old Days, what I myself might have chosen. But sure as heck it is not the Bad Old Days now! We are well into the 21st Century. Cutting-edge Hi-Tech continues to exponentially rocket upward in power. Those of us with ALS have a fulfilling and exciting future ahead of us. It is already possible to be semi-independent. And productive. And to have fun.

And the Hi-Tech enabling these things is becoming even more amazing…

Why would you want to miss out on all that?!?