"Why, oh why can't I die in peace?"

"Why, oh why can't I die in peace?"

Joan Allenden attributes the stigma around assisted dying to stubbornly ingrained Catholic guilt still present in Irish society.

Every evening, Joan Allenden vents into her trusted recording device in a full-blooded attack. She fires her words like tiny missiles to channel the overwhelmingly emotional and physical turmoil built up throughout the day.

While the audio diary entries vary, her question remains the same.

"Why, oh why can't I die in peace?"

She attributes the stigma around assisted dying to stubbornly ingrained Catholic guilt still present in Irish society.

Her hope is that the haunting voice notes will one day serve as a reminder of what she and those pushing for a shift in legislation have suffered.

"They are viciously angry," she says of the recordings. "This is cruel, it is torture. Prisoners wouldn't be tortured in such a way for doing awful things, but this is my sentence."

The torture Joan is referring to is multiple sclerosis which knocked on her door like an unwanted house guest 33 years ago. 

That same house guest has not only outstayed its welcome but has grown even more relentless in its bullying. The torment starts from the moment she wakes up to the time she goes to bed at night. 

It robs her of television and Maeve Binchy books — she explains that the strain is too much on her eyes. She has ended up on the bathroom floor for an hour when she slipped and had to phone for urgent help.

"I plead and bargain with her every night," Joan said of her guardian angel, "but she doesn't want to let me go. I have a bunch of people up there who I talk to and beg, please let me join you."

The Dying with Dignity Bill — which if passed would grant seriously ill people the opportunity to avail of medical assistance to die in special circumstances — was voted to committee stage in the Dáil last year. Submissions are currently being considered on the proposed legislation from individuals and groups.

Joan's refreshingly black sense of humour on the topic punctuates an otherwise dark conversation.

Her bold grin, nonetheless, guards a tortured interior.

"Explosives go off inside me when I'm reminded of how another human being can be given the authority to say 'you can't do this'. 

"This is my body and it's my choice. I have spoken these words so many times to so many people that I can feel their bodies cringing inside. 

"I know I've been a huge disappointment to so many people and I'm truly sorry for wearing my family down. My good friends Rose, Elizabeth and Teresa have been my rock. They have stuck with me through thick and thin and good and bad."

Honeyed light bathes the front room of her home in Valentia, Co Kerry. The island's unearthly beauty is some comfort during spells of Joan's excruciating and unabating pain. A robin peers inquisitively in the window — Joan's afternoon visitor.

Joan Allenden at her home Butterfly Haven on Valentia Island in County Kerry. Picture: Don MacMonagle
Joan Allenden at her home Butterfly Haven on Valentia Island in County Kerry. Picture: Don MacMonagle

Every day, the world beyond her window is growing further and further away. The Dublin native has abandoned all hope of a normal life now and is examining formalities so she can travel abroad to eventually fulfil her wish. The physical pain, she explains, has become unbearable.

"If I wasn't living here I would have taken my life a long time ago," she sighs. "I love what I'm looking at every day."

Joan compares the activity in her body to that of Vesuvius.

"I might look like you in a physical sense but inside it's volcanic," she says thoughtfully.

The mother-of-four relishes every musical note of the Eric Clapton album wafting from her CD player. She passes the hours with adult colouring books and what limited housework she can undertake. 

Butterflies of every species pepper the walls. They sit in glass frames, brighten fabrics and cling to every possible corner.

Their symbolic nod to resurrection is an irony not lost on Joan. Having started her hobby as a young girl, the collection quickly spread through the whole house. However, one can't help but cast a distracted glance at the unapologetic urn sitting among her dozens of trinkets. 

The mere sight of it jolts you in a way that's unexpected. For Joan the choice — though excruciating — is an obvious one. It lies between death and a painful limbo.

"I have sorted everything out," she says. "I've told the funeral director down the road to stick me in the cheapest coffin. The plan is that I'll be cremated in Cork."

Currently, Switzerland is the only country welcoming foreign nationals for legal and medically assisted suicide.

It might seem like the only option for someone determined to end their own life. Regardless, Joan's imagination drifts to long coral Islands supporting infinitely more forms of life.

"I've always wanted to go to Hawaii. Hawaii Five-0 was my favourite programme and the only thing left that I'd like to do is go see the beautiful turtles there. That would be my final wish. It would be nice to have one last holiday."

It might seem like an idyllic way to spend your final days but the reality is quite different.

Hawaii boasts some of the most stringent assisted dying laws since its introduction for residents in 2019.

Legislation requires terminally ill patients to issue two oral requests for life-ending medication before waiting 20 days and signing a written request. This must be witnessed by two people — one of whom cannot be related to the patient.

For a doctor in Switzerland prescribing lethal medication, the person must be suffering intolerably from a severe illness, and have a medical diagnosis confirmed by doctors or clinicians reports. 

However, it lacks any requirement for the illness to be terminal or resulting in a shortened life expectancy. In short, the country does not consider assisted suicide a crime. This is in stark contrast to Ireland where so much as helping with an online booking for Dignitas euthanasia clinic in Switzerland can potentially result in a criminal penalty.

Gail O’Rourke from Tallaght became the first person to be charged with assisted suicide. She had sourced lethal barbiturates for her friend Bernadette online who — just like Joan — suffered from debilitating multiple sclerosis.

The close friends had previously made arrangements to fly to Switzerland together before a travel agent alerted gardaí to their plans. Bernadette subsequently made the decision to die at home in 2011 with drugs purchased and paid for online by Gail. 

The case sent shockwaves through the nation as Ms O'Rourke faced a 14-year prison sentence. She was eventually acquitted of assisted suicide in 2015. 

Joan is visibly angered at the criminal element of assisted dying for friends of the patient.

"This has made me feel like a criminal," she says. "I'm 61-years old and have never been involved in any kind of criminal situation.  The only choice I have at the moment isn't a nice one."

Joan's emotional longing for physical contact is palpable. The pandemic and her disease have made for destructive bedfellows. They have starved her of human touch and added layer upon layer of uncertainty.

"This is a need that outweighs everything else between two human beings. It's the one thing I'll really miss if I have to go abroad. Wouldn't it be lovely to lie here and not die alone?

"When the time comes I'd like to have someone holding my hand. My friends have accepted what I want to do. I have never asked them to help me in any way. That's never part of the discussion. The friends who left after I told them my wishes were never really in my heart anyway."

She describes how everyday necessities like getting out of bed each morning have become arduous tasks.

"There was a time when I used to smile and joke, but these days all I do is cry. That little bit of rising that I can do is enough to keep me living here alone. 

"In the last four years, after I was forced into a wheelchair, it was like a guillotine. I had the world's hardest fight not to take my own life. Life has been horrific since."

She's angry at the Government who she said has robbed her of any free will.

"When I first came here I had no idea of how cut-off I would be. Even though I was diagnosed with MS all those years ago, I never thought I would lose this much control. 

"All I'm asking for is a peaceful death. People don't want to hear what I have to say but all I want to do is speak my truth. 

"God gave us free will which, in a lot of circumstances, is a bad thing since there are such terrible people out there. In this case, though the Government has stolen it from us at a time when we really need it."

She is desperately urging people to support the Dying with Dignity Bill.

"I'm asking people to think with their hearts. I'd like to thank everyone who has taken the time to read my words. They might sound crazy but if it wasn't crazy it wouldn't be me. 

"I hope I have come across as a kind and caring human being but I hate what my body is doing to me. To get any support for this bill, is going to take the whole country getting on the same page."

Tom Curran — European coordinator for Exit International — echoes Joan's sentiment. He also has fresh concerns about the repercussions for those straying outside the confines of the law to end their own life.

Mr Curran’s partner of 25 years, multiple sclerosis sufferer Marie Fleming, was unsuccessful in her attempts to change the legislation on assisted suicide at the Supreme Court in April 2013. She died later that year aged just 59.  

While Marie's battle ended, Tom continues with Exit International — an organisation providing information and guidance on assisted suicide. The advocate insists he will never stop fighting for people suffering like Marie.

It's not just the current legislation that the activist has to contend with. Tom described how many have fallen prey to unimaginably wicked con artists promising an end to people's suffering.

Every call he gets from an unsuspecting victim hits him like a runaway train.

"I've had people ringing me complaining that they had ordered barbiturates from me in the post that never arrived," he reveals. 

"I hate what my body is doing to me." Photo: Don MacMonagle
"I hate what my body is doing to me." Photo: Don MacMonagle

"Sometimes fraudsters use the organisation's name to try to lure them in and seem legitimate. It's only after the drug doesn't arrive that they make contact with us. They think we are part of it and that can be difficult. At first, I wasn't sure how to handle it but you develop a thick skin. 

"In a way, it's some consolation that nothing is sent and it's only the money that's taken. It means that when the time comes for them to take their own life they're not going to think they have what they want and realise the only ingredient it contains is baking powder."

He voiced regret that the current legislation is leading to a number of people taking the law into their own hands. This, he warned, can have disastrous consequences.

"There are hundreds of people offering barbiturates for sale on the internet and they are all scams," he said. 

"We are reviewing the online results at the moment and have found 180 scams involving a lethal drug. That number is updated every month. Many are asking themselves why someone would do this to them. We have an inherent ability to think that everyone is honest until proven otherwise, but sadly that's not the case. What we're trying to do now is warn and educate people about these scams so they don't fall victim to them."

Tom recalled the experiences that sparked his campaign for a change in legislation.

"It's so sad to witness that gradual deterioration. You are living with the helplessness of watching the person you love fade away, particularly if they are going through pain. All you want is to take the pain from them. You would suffer what they are going through if it meant taking their pain away, but there isn't anything you can do."

According to Tom, many seriously ill people explore options to end their own life as a form of insurance.

"Some just want to have that option for a time when their illness takes them beyond the ability to end their own life. Only 80% of those prescriptions are ever used. The person can put it away and get on with living, because they know they are in control."

  • To find out more about the Dying with Dignity Bill 2020 visit https://www.oireachtas.ie/en/bills/bill/2020/24/?tab=debates

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