Multiple sclerosis is a vindictive illness. Uncertainty is an every single day issue because people with MS do not know which way they will wake up in the morning, or how they will be in a couple of hours.
We could wake up blind in one eye or unable to walk. We could be feeling pretty good, but an hour later we could be so tired that we have to return to bed once again. Because of this uncertainty, we have to enjoy every minute of every day and live life with the precept ‘carpe diem’ tattooed on our forehead as a reminder to live life to the fullest.
Because of its maliciousness, in my case, I want to show others that having MS is not the end of the road. On the contrary, it’s the beginning. It’s a scary journey, but one to be had either way.
Suicide law in Ireland has been a hot topic this year. Marie Fleming, a multiple sclerosis patient in the later stages of the illness, is seeking the right to commit suicide with the help of her long-term partner Tom Curran. She does not want her partner receiving criminal charges for assisting her in her dying wish, and went before the President of the High Court, Mr Justice Nicholas Kearns in Dublin to battle it out.
Attempted suicide is no longer a criminal offense in Ireland since it was decriminalised in 1993. While self-harm is not seen as a form of attempted suicide, assisted suicide and euthanasia are still illegal under Irish law. This however was challenged at the High Court in December 2012.
Marie Fleming, 59 and former university lecturer, is in the last stage of MS, with very limited mobility and a variety of other symptoms. This type of MS is characterised by a gradual progression of the illness from its onset with no remissions all. Marie was diagnosed in 1986 and is now stuck in a wheelchair due to paralysed limbs and acute pain. It makes her dependent upon others for care and support, which means that major life changes were required.
Because of this, Mrs Fleming was looking to have the right to end her life the way she so wishes, with the help of a physician at a time of her choosing. Marie also argues that she wants it to be her own rational choice when she finds her life not to be valuable anymore. Mrs Fleming argues that the strict ban on assisted suicide is unconstitutional and goes against the European Convention on Human Rights (ECHR) since her dignity, autonomy and privacy is violated. Where able-bodied people are allowed to commit suicide, severely disabled people are denied the same treatment, and therefore discriminatory. Marie as a result wanted the Director of Public Prosecutions to issue guidance outlining which factors would be taken into account in deciding whether to prosecute assisted suicide.
As a MS patient myself, I try to understand why Marie Fleming wants to have legal rights to end her life the way she wishes to do. While I am nowhere near the stage Marie is in, it does beg the question why assisted suicide cannot be decriminalised. It makes me question my own future and wonder if there will be rights in place in regards to euthanasia if I would wish to end my life respectfully.
I am firmly against suicide, and I fight hard to get nowhere near the stage Marie is in. Nevertheless, questions do linger. Will my dignity be put to the test when I draw my last breath? Will my family have to put up with me when they should lead their own lives, regardless of my illness and/or autonomy? Should whomever assisting me in my dying wish be sent to jail for helping me because the Irish constitution says so?
A competent adult has the right to refuse medical treatment even if death would be the outcome. Actively putting this death in the hands of another party is considered a totally different matter according to the three judges presiding over Mrs Fleming’s case. It “would be impossible to make sure the aged, the disabled, the poor, the unwanted, the rejected, the lonely, the impulsive, the financially compromised and emotionally vulnerable would not avail of this option to avoid a sense of being a burden on their family and society”. (http://www.personalinjuries.ie/page10.php?post=9)
“An absolute ban on assisted suicide is justified to protect vulnerable people from involuntary death and does not breach personal autonomy and equality rights under the Constitution and European Convention on Human Rights”. (http://www.personalinjuries.ie/page10.php?post=9)
For these reasons, the court rejected the constitutional claim and as Mr Justice Nicholas Kearns, with Mr Justice Paul Carney and Mr Justice Gerard Hogan said, “unraveling “even a thread” of the ban, by even a limited constitutional finding in favour of Ms Fleming, would, or might, “open a Pandora’s box which thereafter would be impossible to close.”
Needless to say, the media also had a lot to say about this. Newspapers, talk shows and anyone who had something to say about it, did. We were openly asked if we can include a partner, a doctor, a friend or someone else in our right to die. From my experience, most people said yes, euthanasia should be allowed in certain cases, including assisted suicide.
My native country allows euthanasia, and I have a clear wish myself to be assisted in some way should I be unable to do so by my own hands (although I am firmly against suicide). Dignity is indeed a big word when you need help to use the bathroom, shower, and talk, prepare your own food etc. While I know my mum would help, I could not ask the same of other family members. It is not a morbid thought; it is a realisation that people should want to end their life in dignity, in style even when life becomes unbearable.
True, when you check the meaning of ‘terminal illness’ in a medical dictionary, it means “a disease that cannot be cured or adequately treated and that are reasonably likely to cause death to the patient in a relatively short time. This term is most commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular usage, it indicates a disease that will eventually kill the victim. For example cancer, heart disease, Lesch-Nyhan Syndrome, Ebola Hemorrhagic Fever.”
Despite the fact that people living with MS never refer to their illness as terminal, solicitors used the word ‘terminal’ in court. I am unaware if Marie’s solicitors used this terminology to add more trauma on her wish to end her life, but it seems that what solicitors say in court, the media have to use the same jargon.
This had a backlash, however on MS societies receiving calls from worried people, asking about the ‘terminal’ expression. Families and friends thought they were not told the whole story about their loved one’s MS. I myself had people questioning my own illness because they heard the media say that MS is a ‘terminal illness’ while I never refer to myself as being ‘terminally ill’.
Absolutely, sometimes MS feels like a terminal illness, and it might get worse quickly. On the other hand, it also may stay level for decades. I see people much worse than I am when I have my check-up in the MS clinic, but I also see how others talk and are busy on their feet many years after being diagnosed. ‘Terminally ill’ is a phrase for people dying of cancer, not people living with an illness like MS. There are few cases where direct death was caused by MS.
In the end, the truly sad thing is courts denying people the right to live their own life and deal with death when someone is so obviously tormented. I wished the Catholic Church and criminal courts would stay out of something so personal. Sanctity of life is a personal matter, what you or I see in this is not up to a court to decide. Not now, not ever.
The right to life does not import the right to die according to the court. For all these reasons, I want to have a cure for multiple sclerosis to stop families being dragged to court for helping their relatives to die the way they want to. Too many great minds have perished with a total loss of dignity and understanding.
This has to end.
For more on this case, please read:
MS sufferer Marie Fleming has chosen how she will die despite Supreme Court ruling
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