Terminal, life threatening, premature death, slowly dying, and end stage all mean the same thing, your life and disease are slowly getting worse and death is a lot closer for you than say a "healthy" person. The other thing they all have in common, is no one ever wants to openly talk about it. Time to change that!!!
☆I wrote a similar blog a year or so ago about my thoughts on Death and CF in the way I view it for myself. This one is more geared towards the idea of not letting the death conversation be put on hold out of fear or sadness.
In life we are promised one thing and that is, death! You may never get to see love, children, happily ever after, or a white picket fence with a dog and kids in the yard. Sometimes you get a glimpse of life and it's over. Sadly, there is nothing that can even be done about that. No parent should have to bury their child, but with diseases like CF they make that a little more complicated and heartbreaking.
☆When I was growing up, Cystic Fibrosis was considered and to me still is a terminal disease. It was for the longest time a death sentence to children with "salty skin", which is NO longer the case thankfully. Now, the debate is out there on terminal or not and I don't feel like getting into it, so for this blog and my personal sake, let's just say I am terminal.
When I was growing up I was never misinformed or deprived of what CF really was and what could and would happen. My parents told me what was going on with my lungs and my life and never held anything back. For that I am so thankful for the parents I am blessed with. Honestly they explained death and how it worked. I sadly saw it first hand when my grandfather passed and one of my cousins with CF who died after her lung transplant. So, from a YOUNG age I was ready and aware of death.
☆I had my funeral arrangements in mind, since I was roughly 8 years old. The songs to be played, the way I want to go, the people who will be there, I want a guest list. I knew it was going to happen and wanted my last goodbye to be perfect. And I still do!
As an 8 year old child that is something you should never plan, think, or know about, however, I did know about it as it was and is my life. To me that made the world a whole lot more understandable. Growing up fast is something a Cystic has to do, sadly no matter the age you learn quickly that life isn't something to mess around with and you should never take it or the people in your life for granted.
☆I am sure we've all heard the "you have ten years" "6 months", "don't get attached or make plans". That is all a bunch of smoke and doesn't have any relevance to any of us, especially now in 2015. Although the reality of death is still very possible and real.
I can't say I don't think about it once a day or even more, because I do. I constantly lay my head on my pillow at night and think, "will I wake up?", "will I get to say goodbye?". I can't help but think these things and I am sure I am not alone in the CF community along with all of those who have terminal diseases. I guess you could say I am just not "afraid to die" or am I scared of death, which I have been asked alot throughout the years.
We all die, I can go tomorrow in a car wreak. This is reality. However, having it as a reminder everytime a coughing fit hits either one or more times a day it becomes an eye opener.
☆I took a class in college that was called, "Death and Dying", terrifying class actually. However, it hit a lot of things right one the head about this topic and how people are squirmish to talk about death. It shouldn't be like that.
I think it is somethig we should openly speak about, sick or not this topic shouldn't be so taboo. Will it hurt when I go, I don't know and I hope not. Will my loved ones be upset, I'd like to think so. That doesn't change that it should be talked about as naturally as anything else. Talk to your loved ones about what you want and ask questions about death. Tell them how you want to say goodbye for the last time. Be open about it and it honestly will make it easier on everyone involved.
☆Me, I want a Kings/Vikings Burial and in most states it is illegal, although I have found a loop hole. Which is why when the song, "If I Die Young", by the Band Perry, was released I got cold chills and to this day cry every time I hear it. I swear she read my journals growing up. I want to be surrounded in roses, sent into the sea with a love song, that my friend Ashley sings for everyone to hear, and then set on fire to become one with the earth. I believe and know in my heart, I will come back as rainbows and butterflies to prove to my loved ones I am watching them and I am ok.
Never hide the truth of death and the facts from your little CFer's. As hard as it is for you they can't be blind sided by the topic later on. By no means do I think you should harp on it and talk about it all the time. Only make small gestures at an appropriate age to see where their mind set is on the topic. Then brush up on it once a year or maybe 6 months until they understand 100%. Don't terrify them with the topic and make them afraid of anything about dying or CF. It is just more difficult to swallow and cope with when you don't mention it until it's too late and they are at that point and have no idea what's going on.
☆Hopefully, with all of these new drugs for CF we will be living even longer now than before. I have faith that CF will one day be controlled by these new drugs and treatments and will help to prolong lives. Just remember everyone one is different and these new drugs are mutation specific at the moment and not everyone qualifies, so the death talk does still need to happen.
The truth hurts sometimes but it's needed,
Sandi
Sandi
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