As someone who has a terminal progressive disease. Actually facing your mortality is the most horrifying, terrifying, heart wrenching - soul breaking feelings… Utter despair and fear.
After being told of my prognosis it took me a year, almost two to somewhat accept it. There’s no choice!
It’s coming at me like an unstoppable freight train. Having that terminal diagnosis takes time, to be able to calm down the constant fear and anxiety, and the feelings of total loneliness, then to just live what time you have left without constantly breaking down or having nightmares about you death and being put in the ground. The yearning and begging, pleading to a God I don’t believe in to please let you stay here with your child and family, alive and having a long happy, healthy life together. It’s like grief though, and it hits you in waves.
That time it took me though, so many people face a much more immediate terminal prognosis, where they just don’t have that precious time to get to grips with it or spend time with their loved ones knowing it’s their last days. Genuinely I don’t know how they do it. It’s so easy to be blasé about Death when you are still a time away from it.
Even before my diagnosis I was open with family about my wishes to be an organ donor, and my funeral wishes. I can talk openly about death now without breaking down all the time, but that is only because i am still a couple years away from it at the age of 42.
By then i will become increasingly and profoundly disabled, unable to walk, talk, swallow, eat, breathe, think or do anything for myself. I will end up with round the clock nursing care and death can come in many different forms due to my ever increasing frailty of my my mind and body. All of that and the pain it inflicts on my precious DD breaks my heart. I dread and fear going through that dying process, and inflicting that on her. That is too much to bare. I know that the slow agonising suffering I am going to go through, that Death will actually be a sweet release, because I have already watched several family members die from this genetic curse. Even so, I truly do not feel ready to die and I will NEVER feel ready to leave my beautiful loving young Daughter.
When Death is just around the corner or imminent, of course it is the most terrifying upsetting thing any one will experience, no matter the cause or age. There are some better ways to go for sure but ultimately it ends the same permanent way, and the effects are enormously profound.
I can relate to older people near their time because that’s similar to where I am despite being told in my 30’s. They are just luckier too have had more years of life and love behind them. In saying that though I can imagine that may even make it harder to face because you have so many decades with a spouse, children, grandchildren, family, friends and your entire lifetime of cherished precious memories that soon will end and be gone forever.