I'm writing this from a very unique perspective. One I really hope nobody here ever finds themselves experiencing. Today, I looked in the mirror, and for the first time, I realized that I am going to lose the battle with Marfan's. And it was okay. I dunno if it was the near-collapse in the middle of practice for Handel's Messiah. I dunno if it was the suggested treatment for that. Or the fact that I'm still unable to find a qualified heart surgeon. Or that I can't pay them. What made it different was that I finally told myself it was OK, when it was my time it was OK. Whether I'm right or wrong about there being a God, I won't be in terrible pain any more. If I am, so much the better. But now, I see it as another place to go. It's a new destination, not something to be feared. I don't really want to leave my wife and son, but it'll be OK when the time comes. And I think they feel the same-or at least my wife does. My son just continues to chew on Mr. Bumpy. But he knows Daddy loves him. These are the important things. I'm sure someone will say "But you're young, with a newish baby and all, why would you want to go?" I don't. But there's a difference between a person that when their time comes is dragged off kicking and screaming and a person who lets go willingly and faces Death an equal. No, as a long-expected friend. Have I lived a good life? Debatable. I try to help others as much as possible, and to live what I believe. But I've learned the secret to dying a good death. Until it's my time, I'll continue on as I have been. but there's nothing to fear any more. If it's tonight, or five years from now, I've learned that when it's my time, I'm ready. Macabre? Possibly. But it almost feels like I finally reached enlightenment tonight. Before anyone asks, I've had no pain pills at all. They won't prescribe me anything. But pills aren't the answer. Money isn't the answer (and I swear may just be a hindrance.) Knowledge isn't the answer. The answer to life and all of its questions is not 42, but love. Real, self-sacrificing love. The kind that give your last shirt to the man that has none. Or breaks your last crust of bread in two, that the man next to you won't starve. I realized that everything I am, everything I do, everything that motivates me can be summed up by this. And because I now understand, there is nothing that I fear any more. Amor vincit omnia, indeed. Until it's your time in turn, my friends, live well. Life without love isn't life-it's mere existence. I'mma go toddle back into my corner now.
I was thinking about that the other night.. how short a time we all have here.. I was wonderin how you were doing last week some reason- you just popped into my head my girl is always telling me the same thing but look she's still around.. this time of year is just depressing- it's the weather or something =\ reminds me I gotta call the old man.. take care man.. prayers coming your way
Same with me, I'll be thinking about you. Everything I've seen you say on here has been hard, you're an unbelievable man to say the least.
I hope if this or something similar happened to me that I'd have the strength of character to handle it in the way you are.
Reading your post it could always have been my Mum writing it, she had a similar out look when she deiced her own fate and chose not to have treatment for cancer... Keep strong for your family. I'm not religious, but may god bless them all.
Its like you say, everybody has a time. One of my favourite quotes is: Life is what you make of it, and there's no point in worrying about what happens when you die because its inevitable and belittles what you did before Well done in accepting the inevitable, I know there is a very real difference accepting death between the young and old - but you have a wife and a kid, and one thing you can go to your grave knowing is that you came, you loved, you lived, you went. You also, from the sounds of it, have an impeccable sense of good music
Very profound and deep. And nexxo, sticky this. Thank you. If anything, you have given me perspective, enough that I can never say that my life ever was bad. And for that I thank you. Wish I could say more, but wow..
Got chills reading this, thanks for sharing. I hope the last of your days are comfortable, and I wish all the best to your family and loved ones.
There's only one thing you can be certain of when you're born. What you do in the meantime is up to you, it's not a dress rehearsal, you don't get another go (unless you believe in reincarnation). You could live for 100 years, you could live for a few minutes. You can't put a price on health and you certainly can't put a price on love. Whatever you love, whoever you love, continue to do so - as long as YOU are happy in what you do - be a bit selfish in this respect. If you are unhappy, are you happy to continue being unhappy? Think about how much time you may have left to live. Me, well although I don't practice any religion, I can see that it mostly boils down to 'be you and be happy'.
I'm stressed out to the eyeballs at work at the moment. It was supposed to be an adventure and it has been, but it's increasingly stressful, and rather than promotion I may be facing redundancy. Or worse, they might try to shunt me into a lesser role, one in which I'll never be happy. My day is a rollercoaster of a crisis, followed by a response, followed by sky-high stress and anxiety followed by a gradual calm-down before the whole thing starts again. So what's it got to do with Kayin? Well obviously, I need to remember that there are plenty of people with far bigger problems... but more than that... Sometimes you can't avoid crises or disasters, but if you can find that inner calmness and peace, the ordeal may very well be much less of one. Kayin, I don't envy your situation, but I admire the way you are facing it.
It's a long time since I have had tears in my eyes because of something someone wrote. There will be no happiness when you do leave but I wish you a good journey, and know that your flame will burn on on this forum.
Well, let's remember too I'm not dead yet. As for my son, I have very little that will survive me. My disability check would be continued for him, and what few possessions I have are deeded to him. That does include my sword, Sakura, which if sold would actually fetch a price worth having. Skidding into my grave sideways, looking so bad everyone has to close the casket? There ya go. The thing with Marfan's is that you don't just know you're gonna die. It likes to sneak up on people with all kinds of strange and rare problems. You may as well make peace with it now, and if by some miracle one of the patches holds, then at least you know how to handle everything else. That's the spot I'm in, getting ready for all the patches and uncertainty. I face a lot of really nasty surgeries, and some are rather successful if scheduled, but if not scheduled have an over 80% mortality rate (like the one to replace my aorta and a few valves.) In a way, I have a luxury, having a warning to get my house in order, so to speak. I don't want anyone to get the idea that I think I'm gonna drop dead tomorrow. Rather, there's a long process involved in any progressive illness, and this is part of it for me. Would be for anyone. So maybe I can put some minds at ease, so to peak. Nobody's gotten rid of me.
I gave this much thought after my dad died a couple of years ago. We all go, we all have our time, but it's best to embrace that which comes whilst not running towards it and meeting it before we should. I, for one, have a part of me that is looking forward to that day not that I wish that day to come too soon. I see it as the next adventure now, how we face it has more effect on those left behind than on ourselves and it's to your credit that those you leave behind will take solace in the strength you show.
I think what I admire most about you KayinBlack, is how relaxed and mature you come across, and it doesn't even matter what life throws at you, it's very inspiring. The world will be a better place if there were more like you about, I'd prefer it if you stuck around to rub some more Kayin off on everyone
that's good to hear.. I thought you were having dreams of taking that sword and cutting a few willies off on the way down xD I can relate somewhat to the surgeries.. I get ansy when my girl does her routine cath, they go into the heart and poke around.. getting new valves I can imagine would be just as bad as a full heart and lung transplant the drugs your supposed to take for rejection also have some side effects like gums growing over your teeth and things like that.. but that's after around 5 years.. I'm glad she's been able to keep stable on the meds she takes nowdays- but they're hell of expensive it's just such a pain to see what a disabled person has to go through daily.. at the ph meetings we have here monthly- the new people who come in usually get diagnosed with a short time to live.. but then we have to show them- look this lady over here's been around for 14 years.. that one 10 etc.. they realize that there is hope and the attitude changes might be worth going to a meeting with others who have marfans.. just an idea- they really do help and if your lucky they'll have free food too (that's why I go) this time of year, there's a lot of prison booty getting raped too.. I think it's the weather- just makes people crazy.. you'll see a lot of shootings too- why I pack hardboard down my pants if I'm on the wrong side of town take care man.. maybe take a viagra and run around outside with a boner.. long as none of those crazy kids gets it on his phone- it's your word against theirs
thank you for your thoughts and feelings Kayin just reading them makes me want to try harder to be a better person and im sure that their are many others that feel the same way. Much love !!
