What I have learnt so far – no one really gives a flying f8ck so go ahead continue to be yourself and apologise to no one for being the true version of yourself….
So, the bravest thing I have done this year is owning my own story, and for me that story is defined by living with Muscular Dystrophy. A rare disease, which is both Progressive and irremediable and it shapes every aspect of my life.
Muscular dystrophy is more than just a diagnosis, it is a daily reality check that challenges me, physically, emotionally, and mentally. Yes, it is a clusterfuck. Its hard. It is hard to navigate a world that is not always accessible, hard to face the uncertainties of my condition, and hard to find the strength some days to simply push forward, especially on those days that it utterly consumes you, and it feels overwhelming. But hey Ho this is my reality now and I choose to own it not with defeat, but with courage guided by my f8ck you (Muscular Dystrophy) attitude.
I know I come across as being incredibly angry towards my disease but that simply is because I am living in a hostile environment. My body is my home and most days I do not feel safe in it, and that alone is hard to explain to others let alone understand. I do not care whether people “read this or want to wipe their arse with it,” well now considering we live in the world of phones and tablets that might be a little more challenging for people these days compared to when everything was printed on paper. What I am trying to say is this is my story and if you want to better understand follow my blog if not exit this page. My people pleasing era is over I am living my life on my terms and if this year has thought me anything it is to be yourself and fight and advocate for what you believe in.
This disease has taught me a profound truth, that strength is not always physical abilities, it is about resilience, it is about waking up each day and deciding to try live fully despite the challenges I encounter. No two days are ever the same when you battle a chronic illness. Each morning you wake up not knowing what kind of fresh hell awaits you. Whether the new day will bring overwhelming fatigue, relentless pain, or moments of reprieve. It is a constant battle of unpredictability, but it also deepens the importance of compassion, choice, and dignity in facing life’s challenges.
So now it is about finding moments of joy and meaning even when sometimes the weight of the journey feels unbearable. As I said before I share my journey not for sympathy but to fuel understanding for those looking in. I suppose you could call it a call for compassion, or to some people a catch yourself on moment as really some people can be so awkward around those who are sick or have a disability.
I want people to understand that not all disabilities are visible, that not all struggles can be cured, and that every person deserves dignity and respect no matter what their journey looks like.
I suppose because of my own personal journey of grief and acceptance, is the main reason I advocate for legislation for voluntary assisted dying in Ireland. I have seen and felt the immense pain that comes with irremediable suffering, both my own and that of others. I believe that those living with incurable illnesses deserve the right to choose their end- of-life care, to make decisions that reflect their values, their dignity, and their sense of peace.
So not only am I owning my story, as it is my life, my illness, my journey, but I also want the choice of when I get to finish my story. I want the right to close the book on my terms, to choose that final chapter when my suffering becomes unbearable. That choice is an expression of courage, dignity, and humanity, and it is a choice i believe everyone deserves. I hope the new government considers this when they are putting to together their program for government and legislate for Voluntary Assisted dying in Ireland, allowing me and others like me the time to focus on living life, cherishing our time with family and friends and finding peace of mind in knowing that there is a compassionate end of life choice available.
This is my story. It is hard., It is rare. But it is mine, and I own it with pride and hope for a better, more compassionate future.
Until next time,
Siobhan Malone McBarron xoxo
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