The need to support and pass 'Right to Die' legislation in Australia and around the world.
Written by an Australian person with severe Myalgic Encephalomyelitis, June 2006, (name withheld by request).
I know this is a touchy subject, but it's a very important one for people with severe ME. Our quality of life can become so abysmal that we no longer have any choices at all: we can't move or do anything for ourselves. The right to die is a choice that we need to have, so that we can keep on fighting, in confidence that even when we become unable to move or function, we can still make that choice and have it carried out.
If anything, I think having that choice will prolong lives. It's the fear of _not_ being able to make the choice, of being prevented by others and by your own disability, trapped in your own rotting body in a nursing home, that causes a lot of the suicides. Knowing we have this choice, that it will be respected, will in fact reduce that fear.
If we are going to kill ourselves, without this choice we have to plan it while we are still able to make things happen, while we can still move and have enough energy to push an issue. In other words, we have to throw away a portion of our viable life, to be able to die. Having the right to die, knowing our choice would be respected and carried out at the point when we make it, is a reassurance we badly need and which will help us keep going.
I am in contact with other people with severe ME, some of them quite young. We become unable to keep ourselves clean. This means ending up lying in your own urine and faeces, waiting hours or days for what care you are allowed (if any). You can't move, lying there, after a while the bed is cold and sludgy, and the urine and faeces moisture breaks down your skin. The smell makes you also vomit over yourself, you can't move, so lying down it chokes you and runs in your ears, cakes your hair, after a while it breaks down the skin on your face and neck. Any contact with others (including the care you need) exacerbates the disease, and you suffer intractable pain.
We don't want to give up. We will fight on as long as we can. But we know we are rapidly losing the ability to commit suicide on our own, which currently is our only choice when our appalling situation finally gets beyond our endurance. Knowing we have the right to die, that we can choose that at the very end, long past the point where we could make things happen on our own, would support us in our fight to go on living.
I believe future generations will look back and be appalled at how we allowed such extremes of suffering in severe illness/disability. The children of the future will see us as savages, torturing our own kind.
These comments and this additional information on the right to die was sent to me by Iolanda, not long after the original text (above) was made public. Many thanks Iolanda.
(A short note on the text below: This text is great but I feel the need to point out however that 24 hour nursing care for those with this level of severe M.E. (a) is often not available or not offered and (b) because of the overwhelming senitivities to physical activity, mental activity, chemicals, noise, light etc etc. hospitalisation may be a disaster and make the person far far more ill, and so be untenable. (It may even place their life at risk) and (c) there is also a significant risk of abuse in hospitalisation for those with M.E., unfortunately; physical, medical and ermotional. For most with severe M.E. hospitalisation is just not an option, for one or more of these reasons. Jodi Bassett, January 2007)
Iolanda wrote...
I'd love the opportunity to reply to someones request for the "right to die". I'm posting this as a very vocal and fierce supporter of VE and an individuals right to choose. I'm an Australian suffering from multiple disabilities and health problems so I'm in an ideal position to contribute to this topic.
Firstly let me say that anybody reduced to conditions mentioned in this message I'm replying to - of laying for prolonged time in their own urine and faeces - should be in a nursing home with 24 hour care.
But getting back to the topic of voluntary euthanasia (VE) itself, studies have clearly shown that people LIVE LONGER when they know that they have access to VE at their choosing. They have nothing to fear of the future and this helps them live better than they would otherwise have lived.
So how do people get access to information about VE?
Well, you can always go online, but the information is unlikely to be reliable. Whatever you decide though, don't expect to ask for help from anybody in Australia. You see, if you email, fax or call anybody and discuss anything that might incite "suicide" (euthanasia) then it's deemed illegal and can attract tremendous fines for your friends. The Suicide Amendment Act behind this came into force on 6th January 2006.
Many many people will resort to their own ways - hanging being the most common method of suicide according to the Bureau of Statistics. But the mere thought of this terrifies and revolts me.
Which leads me to Philip Nitschke and EXIT International, Australia's leading authority on voluntary euthanasia. They are set up to help it's members, particularly the elderly and disabled, with any euthanasia queries, and to teach "self deliverance". Here's their website
http://www.exitinternational.net/
or else you can call them:
1300 10 EXIT (3948) (within Australia)
04 293 6965 (within New Zealand)
61 500 83 1929 (Rest of the world)
Finally, everyone should fill out a "living will" or advanced health care directive, copies of which can be found here
http://www.justice.qld.gov.au/guardian/poa/forms.htm
Basically, it's a document telling others what health treatments you want should you be in a position not to be able to tell anybody yourself.
In summary, I'd recommend to anybody reading this