The Inquiry Room - So, let us get some of the Questions out of the Way?
So lately, my life has been all about advocating for the right to die with dignity and fighting for legislation not only in Ireland but also advocating in other countries. This time, all roads lead to Norway. I was kindly invited to Oslo on November 2nd to speak at their conference and address the Norwegian public, politicians, and press, and speak about my journey and why I am so passionate about advocating for end-of-life choices. For me, the answer is simple -
“To let someone endure agony without purpose is to disregard the value of their humanity, to be trapped in the cruelty of needless suffering from a life-limiting incurable disease when mercy and voluntary assisted dying could offer peace and dignity to those who are suffering and want control over their end-of-life care when they have endured enough suffering".
So, since I have become so vocal about advocating for the right to die, I have decided to address the questions I’ve been most frequently asked in my blog. So here it goes. Just remember these are my opinions, and you do not have to agree with them, and that’s okay as you too are also entitled to have your point of view on this sensitive and controversial topic. Just remember - I am coming from a place of one which I have been diagnosed with a life-debilitating incurable illness that has no treatment!
The common and most asked question I have been receiving lately is, am I afraid to die? The simple answer is no – Why would I be? For me, death is inevitable; it comes for us all eventually, and there is no escaping that scenario. What I am genuinely terrified of is having to endure a long, painful, dragged-out illness which will break not only my body but my spirit before I depart this world. I do not want the final years of my life to be filled with pain and turmoil. They say your eyes are the windows to your soul, and I do not want my loved ones to have to witness the life, sparkle, and devilment depart from my eyes while I lose my quality of life.
Second most asked question – How do my loved ones feel about it? To be honest, this is an ongoing conversation, and it will remain so as without legislation in place, it is illegal for me to avail of voluntary assisted dying as Ireland does not provide this. Also, if I were to travel abroad, whoever decided to accompany me would be prosecuted upon their return to Ireland and could face a 14-year prison sentence. Given this, my options to end my suffering and have peace of mind are not there for me or my loved ones at present, hence why I advocate for Ireland to provide more options for end-of-life care.
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Question – Would you not be better off advocating for better palliative care and improving services in Ireland for those who are facing a life living with life-limiting and debilitating diseases and for the incurably suffering? My answer to this is that these improvements should already be on every government's agenda. It's 2024, and I should not have to be advocating for these resources and improvements; they should be readily available and accessible to all. For me, VAD is not about choosing between care and death, but about recognizing that, for some, the decision to end their suffering is deeply personal. By providing that option, we respect their dignity and allow them to have control over their life in its final stage. Supporting VAD does not negate the importance of funding and improving palliative care either – it complements it by offering a full spectrum of choices for those at the end of life.
Question - Am I religious – what about God? For me, my feelings towards God are complicated right now. Some days I feel comforted, and other days I feel frustrated or unsure. My diagnosis has led me to ask new questions about my faith, and I am still exploring what this means to me. The biggest question I receive in terms of God is, "he decides when your time is up, why would I want to go against that?" My answer is he's not living in my body, enduring my pain, and suffering, and if he were, I do not think he would be pleased about it. The cross I have been left to carry is extra heavy as my muscles are wasting away in my body, and I am also losing my strength. I don’t get a sentence of carrying a cross for a few hours or being nailed to a cross, as my suffering is a lifelong sentence. It's not a Good Friday to Easter Sunday gig.
Question - What has the public feedback been like? I am going to be honest; I have received both good and bad comments. The majority are positive, with people believing that, as I am living with a progressive, life-debilitating neuromuscular disease that has no cure or treatment, I should have the right to choose when my suffering becomes intolerable for me. I have also received some nasty comments telling me I am a publicity whore and to just go kill myself and get it over with. However, that is one of the negative aspects of speaking out publicly; you are putting a target on your back for the keyboard warriors. Thankfully, those are rare, and I only engage in respectful conversations or debates. I once saw a quote, and I remind myself of this when I am faced with nasty people and comments that “Rudeness is the weak person's imitation of strength”; therefore, I don’t engage. There is a reason why the delete and remove button exists.
Question - Why do I put myself out there and continue to advocate? I simply choose to advocate for the Right to VAD because of one amazing lady who started this in 2013, an inspirational woman called Marie Fleming. Without her and her partner Tom Curran, we would have never gotten this far or have had a Report from the Joint Oireachtas Committee on Assisted Dying, which calls on the Government to Legalize assisted dying in certain restricted circumstances. Brave voices and resolute advocates are what is needed to continue the good work, not only for us to honor the memory of those who have gone before us but also to alleviate the future of pain for those who are needlessly suffering with life-limiting, incurable, and terminal diseases.
I am sure the questions will continue as I shuffle down this long enduring difficult road.
Until next Time -
Siobhan Malone McBarron xoxo
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