I grew up in Canberra and although I no longer reside there, half my family still do.
My story is long, tumultuous and complex but one thing has been the same and consistent for over 30 years-unmanaged, untreated, usually unbelieved and inoperable chronic pain and suffering.
Recently I applied overseas for an assisted suicide. I haven’t been approved yet but I was blessed to be raised by two amazing family members who taught me about core life values like faith, hope, love and especially strength. I’m writing because I have always been honest and strong but after 30 years of exhausting all traditional and alternative, medical, psychological, herbal, natural possibilities.
I’ve done exactly what I’ve been advised by all professionals my whole life. Compliant in every single way.
After 3 decades, my body, my mind and a big part of my soul is tired. I continue to take one day, one hour, one minute at a time. My immediate family have never understood and it’s taken me a long time to forgive and understand that and forgive and accept the loneliness this decades long battle has inflicted.
I am writing because I want families to be aware, knowledge is power, to have an open dialogue and I want families to be aware that all we want, ever wanted, was compassion not pity, unconditional love, not pressure and guilt. I want the right to choose to die with some grace, dignity and compassion. I have been so incredibly lucky despite and because of my daily struggle since a young, young child.
I have never, will never give up hoping for an opportunity at a life but after existing in a lonely world surrounded by masked chronic pain and indescribable anguish, I have chosen to fight the hardest fight of my life, despite thinking that my existence was horrific, the idea or thought of this being my future for months, years or decades is worse than dying. All doctors, the best in the fields, have all said it is too risky to operate so they expect me to live off copious amounts of pain killers, no palliative care due to the conditions rarity and left to just “put up with it”. This is cruelty. Plain and simple.
For the sake of your child, sibling, parent, friend, niece/nephew, grandchild, husband, wife and so on…I pray every day, hope every minute and have undying faith that one day humans will figure out that it is more humane to have the right to chose a dignified, beautiful end, than it is to exist in pain, suffering, anguish and a loneliness that is incomprehensible.
If this “story”, letter, advice or whatever you want to call it, can help even one family to accept and cherish their sick loved one as I was so rarely given by the majority of my family, then I will leave this earth, one day eventually, at peace.
Thank you for your time.