Well, this is going to sound extremely weird but I am massively envious of you in one respect Kayin. Death is one thing with which I simply cannot cope. I can't cope with losing friends and certainly can't cope with losing family but most of all I can't cope with the knowledge that one day I too will die. This is not just a 'wah wah I don't wanna die!' thing. This is a full on, nail me to the floor in a colossal, heart attack risking, uncontrollable panic attack kind of fear; the very literal representation of abject terror. Even though there's nothing terminally wrong with me (and my bloodline was recently all-cleared from Huntingtons after some tests when 3 of my mothers siblings developed it) it's just something which my psyche refuses to compute. The way you conduct yourself and speak in your more personal posts fills me with nothing but respect and admiration for you. If I can one day show even a little of the pragmatism, realism and acceptance that you do then I'll be able to go forward in life with hope instead of horror. You're an inspiration to us all here and when you do eventually move on to wherever you believe you will go, you will be sorely missed and remembered fondly. I prefer to think of things like this not as a battle against an illness but as a battle to complete a life; with a wife and child, you've already won twice.
Indeed, I just want to add, that having almost died before. It's frightening. The fact that you can accept it so readily. Is very admirable. Cheers.
I'm envious too. Envious that you have faith that the end of your life is the beginning of a new journey. I wish sometimes that I had that faith too. I can't bring myself to have that faith though, even if it would mean that death would not be such a scary prospect. I used to have faith, but several events in my life convinced me that we only get one roll of the dice, and once we are gone it's game over. I went through a couple of years of questioning my beliefs, and being forced to take a long and hard look at whether my faith was real or just convenient for me. Due to my lack of faith in the afterlife, or in God, I believe I have a bleak ultimate future, and that is something that weighs heavy when I consider it. I too am scared of dying, but I try to put it as far back in my mind as possible. Getting older never helps though. I sincerely hope my lack of faith turns out to be the wrong opinion Kayan, and your passing from this world us just the beginning of a new chapter. It sounds like you are at peace with yourself, and that is something I can only ever aspire to be if I am ever in a similar situation.
You know, even if I'm wrong, the pain stops at death. It's a big deal, you know. There are a lot of things that contribute to that. I've got severe Raynaud's disease, or type II Raynaud's phenomenon, if you're counting. It's so severe I sleep in a set of http://osbornmedical.com/rooke_original_boot.php and if it's cold outside, I wear them all the time because of loss of blood flow to the feet. I've lost part of two toes already because they wouldn't heal after an injury. Add to that arthritis in every major and most minor joints (I have it in the intercostal cartilage in my ribcage even) and spinal degeneration and it starts to suck real fast, and that's not even the worst of the pain-causing problems. So, in a way, win lose or draw I'm getting out of that. I don't have the kind of pain that a stage IV cancer patient has, but when it hurts to even take a breath, you start to look forward in a way to the end. I'm not hastening it, but I know that it's the end of suffering. A perverse sort of comfort, if you will. As to keeping my faith, nobody can offer me a compelling reason to abandon it. I've spent my life trying to become the Christian that Jesus wanted, not the Christian the church expects, and as such, I don't always act or think like mainline believers. It's more important to me that people are helped by my actions than me attempting to browbeat people with something they understand only dimly (cause most Christians couldn't elucidate a point if it were made of absolute vacuum) because at the end of the day, I think a person who was fed without a sermon might wonder what caused that person to do it-and then they ask me on their own terms. Christ never said drag them kicking and screaming. In fact, it's actually antithecal to the message of Christ. People have asked me how I keep my faith. My reply is thus: why are you asking "why me?" Even if you get an answer to the question you can't change what's going on. But, I remind people of this event in the Gospels: the Pharisees (or the really legalistic so-called holy men of the era who basically just sat around and argued how to interpret the 619 Mosaic laws in Judaism, and who before them had interpreted them right) brought a man who had been born blind to Christ. In front of everyone (since they all wanted a validation of their beliefs) they asked him, "Teacher, who sinned, this man or his father, that he was born blind?" Jesus in all likelihood shot them the look that we give that person who has virused up their computer the third time THIS WEEK and just brought it back to be fixed for free cause you feel sorry for them. In the same tone of voice you use to explain to those people why they're stupid, he told them, "neither one. This man was born blind so you can see the power of God." And he healed him on the spot. In doing so, he affirmed two things. Number one, bad things happen to good people, and it's not always your fault. Number two, it isn't always about you. Even if it's concerning you. Maybe (like others have mentioned) my existence is simply a way to help others through theirs, possibly by dint of "at least I haven't got it that bad." That's cool with me. If someone is helped by anything I experience while I go through this life, then I haven't lived in vain. If more Christians lived that way, more people wouldn't have a real reason to call them idiotic. These are all the ramblings of a very tired man. So I'll go rest now. Also, to play with wife's shiny new gaming platform.
@ Kayin: Throbbi, that is a brave admission. Just out of curiosity: what is the biggest most important thing in your universe? (What supersedes everything else in your understanding of existence?) I'd say KayinBlack has found his answer and that is what gives him this peace.
also it's good to be able to roll with the punches- even the low blows to the sacks.. I know the people your talking about kayin- ones who don't bend because they don't really know what they want they just want to make everyone else miserable and holding a conversation about anything outside what they believe turns into a prison shower scene real quick.. stay off skyrim man! I got to blackreach the other night and it blew my mind.. probably the best game to date
You are not alone in feeling that way. I grew up in a very moderately religious household, went to a progressive episcopalian school for 9 years, and haven't had any real religion after that. I have studied bits of the Qur'an, the Torah, the Bible, other religions such as Hinduism, Buddhism, the native American tales, and a few others, but have only found more questions than answers. I have discovered that my mind just shuts down when I try to reconcile it all and all I am left with is the terror and breath taking fear for what I cannot comprehend. Kayin, whilst I do not understand how you do it, and to be honest I am quite envious, I respect you for being able to see death as a friend. I understand that he walks beside us throughout our lives and that we rarely ever meet him until it is our time to join him, but to see him as a friend is something that is only truly for people ready for him. You have my eternal respect and I wish you the best.
I'm really lost for words. In a strange way Kayin's statement is equally sad and uplifting. I wish I was as brave as Kayin, but truth be told I'm probably more like Throbbi in this regard. I hope the last leg of your journey will be bearable, Kayin. For how ever long that may be...
I am genuinely moved. Thank you for sharing your views. It is good to be reminded of what is important, and I think many of us forget it too easily. I know I do. I suppose you have had more reason than most to contemplate it in recent times, but by sharing it like this you help us to remember. And that is more valuable than you might think. All the best in the times ahead, for you and your family. Lastly, if you cannot afford the surgery you need, you could get a donation drive set up. I'm sure many would give what they could. I would.
This. I was actually thinking about this, I would be more than happy to send some funds your way. The Bit-Tech community is here to help
...this is everything! I have a minor version, or a lesser evil cousin of Marfans and I'm afraid to say I have yet to come to fully come to terms with my own mortality even though I should easily survive to eighty - if I behave myself. Thank you for sharing this, thank you very much.
Ehler-Danlos, Loeys-Dietz, or MASS phenotype? I know all the variants. They hoped I had MASS, then I lost an eye (mostly) to ectopia lentis. To all of you who are afraid of death, well, for one I'll bet you're not on the receiving end of something like severe Marfan's. In fact, you're probably of average health. So, your reaction is completely normal. Years of chronic pain have made me almost expectant, but I live for those around me. Like my son. In a way, for the people here too-I don't think I've shared all I have yet. I'll be here till then, at least. And UAB has agreed to do my surgeries, partly just cause I'm a great guinea pig. While we're very low on cash, we're in a home we own outright with no mortgage and insanely low property tax, we own our car outright and they're dropping my student loans because of my health. I sold my i7 setup to a friend who has gotten into making indie films, and is a rather competent writer and director. She had to edit her first movie using the services of a chronically high douche that was flaky as hell, so I'm setting her up with my i7-860 and 470 so she can edit in a reasonable amount of time and use GPU rendering in Photoshop for layout work and promo art. I've moved to a dual S771 setup, with a pair of 1.86GHz LV quads. Needs a PSU, video and sound. I'm currently borrowing a 550Ti from my lab computer and the PSU from my i7 while I clean the internals up and get it ready to go, but that's about all in life I want for, honestly. That, and the ability to sleep and drink coffee again. When the sale goes through, I should have most of that list with it, so maybe I'll be back to I want for not much at all soon. My wife still is trying to keep me from just giving it to her, but if someone's good at something, I don't want something like a lack of a machine to stop them-and she's good, by the opinion of a published author. asura, hit me up sometimes, we probably have a lot to talk about.
my prayers are with you and you're family. Besides death isn't the end it just another of lifes milestones. As it has been said before. When it's your time. It's your time and there is nothing to be done about it.
Rest assured, if death was something worth fearing, life wouldn't be a thing worth living. It's your perspective, and even though I do follow it, that makes you somebody worth a lot of respect.
Thank you for giving us an insight to the truth. Whilst it would appear your body has it in for you, its given you time to come to terms with the problems that you've had to face, and in a way i envy that. Many people i've known haven't had that chance to except the card they've been dealt nor get there affairs in order.
To think that you, with clearly much heavier things to ponder, can still have such an exceptional outlook on life and take the time to show your interest in petty things like my build that you commented on, is truly inspiring. Thanks, but mainly good luck out there to you and your family.
