The complications of having an incurable and terminal illness while in your thirties

Great Debates
41

Special K, obviously I cannot identify with what you’re going through, but my heart goes out to you and your family is in my prayers.

I hope that your family is getting adequate emotional & spritual support during this time. This can mean that they must seek professional help, because as you said earlier, sometimes family members & friends can feel overwhelmed or frustrated, and thus not much help.

I have a friend, early 20’s, newly married with an 18 month old, who was diagnosed with Hep C recently. Yes, it sucks. She is currently chossing alternative therapies as well as conventional.

I know first-hand how terribly brutal some of the “cures” can be. When my uncle was diagnosed with liver cancer, the doctors immediately started him on heavy metal chemotherapy, which is just horrible. He went from a healthy looking jogger to a “bag of bones” as well. Then, the doctors realized that, oops, he had the type of cancer that chemotherapy DOESN’T HELP AT ALL. Sorry, our bad. Nevertheless, he had a much larger heart & soul than I will ever grow, and did not sue. He did go out and find another doctor, questioned him extensively about both his medical experience and his spiritual “bent”, and they worked together on medical treatments and Eastern philosophy & spiritualism (not his religion, mind you) until the end- at which time, by the way, he was back to jogging and teaching and looked fantastic- felt great too.

I wish I could say something profound to you, but all I can think of is- Live, Love, Laugh and Learn, every day as much as you can. And hug those kids a lot, they understand more than we think they do.

I’ll be thinking about you and your family.

42
43

I was justrying to reply to Ej when I hit the wrong button.

I shall keep her friend in my thoughts and prayers as the hardest thing for me is the feeling that I am deserting my husband and kids. Her having a child under two years and a life shortening illness is unthinkable!

My children and husband are such independent, talented, secure, intelligent creatures that it occasionally has crossed my mind that I don’t know what I would do for them if I lived to a ripe old age! Just joking, but a child under three would be something else again!

For example, some kids at four or five will not get on a school bus alone. My son plays the piano and rides a two wheeled bike. Became an ego maniac when he played t-ball since he dominated some games so completely. My husband actually started pointing out his mistakes (to the absolute horror of other parents) since he was knocking kids out of the way to get to the ball and telling people he was probably better at baseball than the coach or his dad!

My daughter likes people but was always aloof (a study in quiet, tooth sucking self assurance) and does performing arts like dressage, quite well. She also knows she is beautiful (looks like a young Sharon Stone or Paltrow - long blonde hair, all legs, eyes and cheekbones). Nearly every mother or father of a boy in her classes has introduced herself to my spouse or myself. And says: “My son talks about your daughter all the time and wants to…” (It starts so soon!) She also works like crazy to clean the house. She just turned nine.

Pride yes, but you do not feel either are going into a nervous breakdown under most circumstances. And I get some solace in that.

Thanks.

Special K

Being a little warped makes them more interesting.

44

K, I give you my heartfelt sympathy and admiration that you’ve managed as well as you have. A lot of other people would have taken the stress and pain of the situation out on others, but it sounds like you’re doing an incredible job of staying together.

Like one of the other posters mentioned, the best suggestion I can make is to start recording your thoughts, memories, anecdotes, and ideas for your children. Write them down, tape your voice, set up a camcorder, whatever it takes. Give them hours and hours so that as the years pass, both your children will have tangible reminders of you. Try to think of things they may encounter (first loves, puberty, pet dying, trying out for marching band, graduating from school, and so on) so that you can give them advice ahead of time. You might also want to consider what to say in case their father ever remarries (not under consideration at this time, true, but it might happen).

Do the things that will give you peace, whether it’s traveling or reading or making amends with estranged loved ones. For all that you’re ill, take good care of yourself.

Finally, decide ahead of time if you will actively manage your death and under what circumstances. If you do decide to, what conditions must be met? Try to figure out as much as you can in advance, and at the same time, don’t bind yourself to those decisions. You will only know what to do when the time is at hand, after all.

Blessed be.

45

This has always been a dark fantasy of mine. If I had a year of life left, maybe I could be a secret agent or something and taking inconceivable risks with impunity.

When somebody treats me bad sometimes I think to myself, “I bet they wouldn’t treat me that way if I had a mysterious terminal illness.”

Sometimes I think about all the sympathy and accolades I would get for “handling it so well.”

Of course, there is nothing wrong with me, but I still enjoy the fantasy when I fell sorry for myself.

I’ve even thought about pretending to have a terminal illness to see what kind of reaction that would provoke.

Apparently this is a quite common fantasy.

Which is why that suspicious part of me has nagging doubts as I read this thread.

A mysterious and unnamed illness, the talk of financial hardship, while just a breath later the purchase of a new Corvette is mentioned, the talk of “black pills” (a myth, they don’t exist,) the contradictory symptoms list, the overreaction to Tracer’s comment, all this and more triggers recognition in that part of my brain that never believed in Santa Claus, and knows that OJ is as guilty as hell.

Perhaps this means that I am small-minded, unsympathetic, untrusting, and such a habitual liar that I must naturally assume that everybody else is too.

I don’t know.

I do know that if I had a terminal illness, I wouldn’t be offended if a complete stranger didn’t just take my word for it because I wrote it on the internet. By that same token, I wouldn’t feel required to prove it to anybody.

On the other hand, you did make the claim.

This probably says more about me than you, but just sharing my thoughts.

46

First, I pity you if you are driven to make up lies. Further, I pity anyone who would create the situation I am in as some sort of a fantasy.

Second, I wish that I was making this up (despite being a mental case for doing so) since mental illness is a less horrible item to contemplate curing than the problem I have.

Third, “financial hardship” is a relative term. Losing one of your two or three TV’s may upset you but to a person who is broke it would look delightful that you still owned two. Maybe I imagine buying a horse farm for my daughter or two month long cruises and a net worth of 20X in three years but feel sorry about leaving 8X. Maybe I feel that my husband could do more if he wasn’t trying to be two parents!

Fourth, I would have a very difficult time fibbing about this as I lack imagination. I would have just used cancer, a brain tumor or something like a rare blood disease as an affliction. Really, brain chemistry? It sounds alien and weird to me at this point, after living with it for years.

Further, I would have to have a very extensive fantasy life to create the world of inadequate safety nets, sub-standard medical care, financial challenges and nightmarish symptoms that I have alluded to. Interestingly, the closest I have come to making a fool or liar out of myself has been when I make logical assumptions about my situation or rely on statements made by experts. Two examples of this are my early belief that the government health system would absorb the costs and leave family assets intact and, second, my litany of symptoms which included a comment from my family doctor relating to a certain disease. I later learned that the poor man didn’t really understand that disease at all.

When I read that people will kill their children for attention, I begin to believe that any sort of deceit is possible. I also believe that if I were hunting for sympathy, this board would hear a lot more about my misery and the truly depressing aspects of a situation like mine.

I sent an example of my suffering to a few of the respondents but do not believe that burdening strangers with such horrors would benefit anyone. It would benefit me if I were a sympathy monger. READ MY REQUEST - All I ever asked for is practical thoughts on handling the scenario since those closest to me are not unbiased observers. I think that may be the best utilization of this venue.

Finally, I shall send medical records or even a copy of the passionate letter sent by my family doctor to the NIH to parties who claim to know, or are, medical practioners and interested in my case. Otherwise, lets have a monetary call that I am a liar and we will both put our money where our mouths are!

By the way, your choice of myths show me that somebody is a little immature and possibly, latently racist.

47

Please don’t call me stupid, racist, or presume to take pity on me.

Sure I’ve lied. Who hasn’t at some point?

More to the point I was speaking of fantasy. I have the urge to lie. Occasionally I have the urge to murder. In the former case, I almost always choose the high road, and in the latter case, it’s just a passing flash of anger that I control quite easily.

This post just strikes a nerve on that common escapist fantasy. That in your situation it may actually be true is tragic.

The syndrome you refer to is Munchausen by proxy. Parents hurt their kids to gain sympathy from friends for their suffering. Yeah, that’s pretty sick.

Projection is another thing. Because it’s a fantasy of mine to have only a year left to live so that I can become a secret agent and take incalcuable risks, and that I’ve even thought about pretending it’s true, I may be projecting this fantasy onto you and that may be why I doubt you.

I don’t understand why you are so offended and insist on attacking anybody that asks a penetrating question or presents doubt.

I would think that if I had only a year left to live IRL that would give me a different perspective. I would like to think that I wouldn’t have time for bullshit, or calling names, or getting angry at ignorant strangers who express doubt. I’d like to think that I’d be trying to absorb experience at the most tremendous rate that I could. I’d like to think that I’d ber passing on good -will and sharing experience so that when I was gone there would be fond memories of me in everybody’s mind with whom I’d made contact.

If on the other hand, I was trying to defend a lie, then I would strike harshly at any doubters. The best defense is a good offense.

As I said, this is what I would do.

48

On your fantasy - being ill really cramps your style. The symptoms of most sicknesses, the reliance on medication, side effects, and the depressed moods.

My mood? I resent your being healthy and wishing you were very ill or dying. It is an insult to me but more to yourself. As little as I think of doctors, please get some psychiatric help.

My life? I can handle this machine. I have only put a few thousand miles on my car and it is a 1999. The shifter just got over its stiffness. The army? The CIA - they would not hire me to do anything. Too feeble and unreliable.

As for you, they may want killers but I believe that the discipline component is more important to them than the maleviolence factor.

Further, my spouse is the source of anger as I believe that he feels that I am being cheated. He is upset that he can’t help me beat this thing.

My anger? I asked a question and do not like off the point comments. Some people may actually like your very interesting perspective. I accept your position but watch the OJ stuff and bragging about mental problems. It is inflammatory and puts people off. I think.

Off the point, my husband would like specific accusations of falsehood - not for a libel suit - but so we could escrow some funds, I could supply proof and a attorney from your jurisdiction could send your money to me. A NEW WEB GAME! OH NO! LOL

49

Special K, I have big doubts concerning the sincerity of this thread. You came in as a newbie poster and started a thread about your terminal illness. I could understand someone being in the position you allege to be in looking for help anywhere they could find it but you don’t seem to really be looking for help, but rather trolling for sympathy. We don’t know you here so why do you feel outraged that we don’t believe what you say? Why should we believe you without getting answers to the questions we ask? You have 13 posts to your credit and I counted 12 of them in this thread, so you obviously have not posted to any other threads where we could get to know you. You talk about going into comas so you can’t drive your Corvette and yet also talk about going on cruises and trips. What is to prevent you from having a coma on a plane or cruise ship? I would think that rules out unnecessary travel so what you are saying seems very inconsistent.

Also I find it very odd that lindsay, one of the most insensitive posters we have had on the board recently would turn out to be such a good friend to you. In fact your style and lindsay’s are very similar, so I am starting to suspect you as being lindsay.

Scylla presented good points and I second them. Since this is an anonymous message board your intimations of libel do not have grounds, so I am going to say point blank that I think you are lying and a troll. I don’t think you have a terminal illness, nor is anything else in your story true.

50

First notice that Wanderer makes sure that he thinks he is safe legally before he starts making childish and irresponsible remarks. What a backbone! Also, let him pick an attorney in his jurisdiction and lets agree on some proofs Wanderer will accept on my illness (subject to his attorney’s verification of the source and legitimacy). And let him also send along half the attorney fees and enough money so that he’ll feel it. I think Wanderer is mentally disturbed to even bother with this thread if it offends him so.

Second, anyone who doesn’t believe me will kindly send their e-mail to the adminstrator of this site with any personal attacks they would like to add and on the “termination date” I have specified above, I shall send along sufficient copies of an official death certificate or a profound apology and explanation of my illness and its cure. This is apparently the only way to satisfy some people. I think that the adminstrator could reopen this thread then.

Look people, I posted an inquiry about only have so much time left on this earth and how I should handle that time. Some of you insist on treating me like a liar or hpochondriac. Fine, believe what you want. I certainly do not have to prove myself to you. The fact that I have medical records and doctors opinions to prove my case means nothing to any of you apparently.

No, I was certainly not looking for sympathy. Just compassion for my situation and ideas of what to do with my last days.

I found this site by accident when I was researching my illness. One of the gentlemen who answers questions had said that myoclonus was not life threatening or something to that effect. Anyway, I started reading all the different posts and “debates” and my spouse encouraged me to write about some things we learned that surprised us and what I should do with my last days. That is how I came to be here. I can assure you, with the treatment I have received by the minority of people that responded to my question, I won’t be back after this reply. I don’t have the time, inclination or energy to fight with people.

To those of you who took the time to answer my post with sincere replies, Thank You from the bottom of my heart.

To those who thought I was looking for sympathy all I can say is wrong. I have lived in this world long enough to know there is no real sympathy from the population as a whole. And not dealing with that type of person once I die, will be a relief.

And no, I AM NOT LINDSAY!! But it is kind of a compliment to her!

51

Let’s see, I’m a racist scumbag liar who’s mentally ill.

For someone who gets really angry about the slightest intimation of doubt, you really sling the quick and easy judgements at the first opportunity, don’t you?

Ok, So you call me an insane racist scumbag liar. So what? Do I get angry? No. I politely ask you to stop. When you don’t, I consider the source, and decide if it’s worth defending myself.

In your case, I don’t think it is.

Before, I had doubts. Now I’m virtually certain. I think you’re lying, too. I think you’re playing little head games for sympathy, but like most people who resort to such practices you simply don’t have the panache or personal resources to pull it off. If you did, well, then you probably wouldn’t bother.

People don’t just fall into and out of comas, like taking a nap. There is no such thing as a “black pill.” I asked a Dr. today while we played tennis. Financial hardships may be relative, but anybody who buys a new corvette, probably doesn’t have anything to complain about. The symptomology of your mystery no-name illness doesn’t fit. If nobody ever had it before, how do they figure you only have a year to live?

Your full of it.

Prove me wrong. It’s easy. Make copies of the statements you’ve received from either the hospital and your Drs, or your insurance company for the last six months. Cross off your name, the Dr’s name, and anything else too personal. Scan them and send them to my provided e-mail address. I’ll show them to a Dr. friend of mine, and he’ll see if they seem legit, and point to the kind of illness you describe.

If you don’t have a scanner, just grab your records and post the date, full name, and cost of each and every diagnostic procedure or test you’ve had for a sufficient period of time that you think will prove your point. Aouple of months should do it.

On the outside, this will probably take you half an hour or so. You will have proven your point. You will recieve heartfelt apologies from me (and Wanderer too most likely, though I can’t speak for him.) What’s more, our credibility will suffer a tremendous blow for having given a hard time to somebody who is just reaching out for some help. Doubtless we will be villified and despised for our bad and untrusting nature’s. We will feel like shit. You will have taught us a lesson that we will remember long after you are gone. We will be better people for the lesson you have taught us.

In short you will have done something constructive with your time. How’s that for a suggestion?

Furthermore, if you can prove to my satisfaction that what you are saying is true, either by e-mailing me your statements, or by listing your procedures as I’ve described, than I would be honored to make a $100 donation to the legitimate charity of your choice in your name (tell me first so that we can agree as to legitimacy.)

I have a long history on this board of not being stubborn when I’ve been proven wrong, and do not recquire unreasonal proofs, just substantive ones. Ask DavidB, Pepperlandgirl, Dr. Fidelius, JonF or a host of others who have shown me to be in error in the past. I admit it when I’m proven wrong.

I think my doubts are reasonable, and I’ve offered you incentive to prove me wrong. Please do so.

In short, put up or shut up.

52

My wife will not be back. I have been an attorney in good standing in Pennsylvania since 1983.

Has it occurred to you that she is not lying? Even if she is, so what? Anyway…

Check the Clinton Case to see the ramifications of lying attorneys. It not taken lightly. Nor is impersonating an attorney since some of you likely think along those lines. I am sending the administrator my Bar ID#. Given the profiles of some people, and my personal situation I would prefer to remain anonymous.

She does have an illness that is destroying/killing her and I have had conversations with more than one doctor about it and the likely outcome and time of it. I am not an MD but even they have struggled with her case. The other facts seem to be absolutely true, also, subject to some ignorance of medical terms, slang, shorthand talk or emotional/personal coloring. New sports car for birthday, 3,000 miles or so on it, kids are more interesting than she described! Even compared to other kids! I can go on for hours on them. And the problems with Medicare.

Anyway, my wife has offered reports and letters pertaining to her condition. Want information? By e-mail send name, phone numbers and address(es) of doctor(S). If it does not upset her any further, if I feel she is up to it and if her primary care physician will offer phone verifications, I will have records sent. I doubt that the doctors you know will even want to become involved, however.

Keep your $100. No offense, but we couldn’t get copies made of her records and my time involved for that.

Finally, I hope with all my heart that she has to say she is a crazy dope and is sorry to all of you on Sept 15, 2001.

Thanks.

53

Surely as an attorney, you can see why we might think your wife’s claim is somewhat extraordinary, and recquire some verification if it’s to be taken seriously?

I am still amazed that medical science can so accurately determine that she will be dead before a certain date, doubly so considering that this is a “new” and “unnamed” illness.

If your wife’s illness is verified here, doubtless a lot of good will come of it. You will not find the membership of this board to be unsympathetic.

I am surprised that making use of a copy machine is too much of a burden, considering how far this has gone, and how much time has been invested.

Why not just list some of the tests and procedures she’s undergone, exactly as they appear on the statements, along with their costs? Surely this will only take a few minutes and it will go along way towards credibility.

Lawyers can’t lie? I didn’t know this. Does this mean that everything they say is true?

If you walk into a courtroom and say “Your Honor, this man is guilty. I give you my word as a lawyer,” do they just procede straight to sentencing?

Surely you are familiar with having to back up your statements with evidence of some kind. As a lawyer, this should be second nature for you. You should surely understand our need for it.

Perhaps your legally trained mind an alternate satisfactory proof, and share it?

I too wish to remain anonymous, and have no desire to supply you with my phone number, name, or address. Surely this is understandable? Consider, in the off-chance that I am correct, and you are not really a lawyer, but SpecialK impersonating a lawyer husband, and if SpecialK is not really sick, but a merely playing a sick prank, than I would have to be pretty stupid to supply you with my credentials, wouldn’t I? I mean that would just be asking for it.

If I’m wrong, and your wife is really sick, than this misunderstanding is your own fault and hers for not coming though with any specifics. Nevertheless, even at this late date, I will certainly apologize if any is forthcoming.

Hopefully you understand my doubt, and my need for evidence in this claim. I mean it would be a pretty sick thing to play with people this way, wouldn’t it.

I know idf somebody was doubting me on something of this magnitude, I would certainly come through with the evidence. I have never known an honest man or woman to mind having their integrity verified. Only dishonest ones.

Why not restore my faith in humankind and make a small effort to convince me and this board, that there really is a person in need, with limited time, who is reaching out. I promise you won’t be disapointed with the result.

Sadly, I’m pretty sure this is not the case. My cynicism will most likely go unpunished.

You are full of it, and shame on you SpecialK for what you’ve done here.

54

Let us end this thread.

First, there are ethical rules for lawyers and the bar really wouldn’t like it if I participated in my wife’s lies or hoaxes. Honest.

Please give me, by e-mail, the address of a licensed physician and some records will be sent.

Also, she determined her departure date, based on the decline in her condition. A doctor I questioned in an appointment agreed or did not contradict, as I recall.

Since you may not have a cooperative doctor, I may try something else. Difficult since I do not handle her records. However, I am trying to scan a letter I have for an appointment at the NIH. Would that help? I would be happy to leave her name on it and fax or send it to the administrator if they will look at it. (And we can cheerfully end this stuff.)Or, I may take her name off it and get someone else to help and send it to you.

Even though I am not good with computers I will have something sent to you in the next few days.

Late in my part of the country,

Special K’s Spouse

55

Special K and “Mr.” :rolleyes: Special K, you are full of it! Maybe one person could be so short-sighted as not to see the need for satisfying doubts, but two people chanting the same mantra of I am sick and I can prove it but I won’t is just poppycock. You are a troll.

56

Not wanting to blank anything, including names, just sent some proof to administrator. Wanderer doesn’t accept e-mail anyway.

G’nite.

57

Well??

58

Special K: or whoever

Let’s see, you scan a letter that says you have an appointment with somebody at NIH. This would prove?

You said:

“First, there are ethical rules for lawyers and the bar really wouldn’t like it if I participated in my wife’s lies or hoaxes. Honest.”

I haven’t really enjoyed her sick little prank either.

Post some evidence.List the tests, procedures and their costs in chronological order. Or do something else that proves something. Act like a lawyer (if you’re not lying about that too.)

You haven’t so far. It’s because you can’t. You’re a liar.
You don’t even have the wit to pull off a convincing fake. What an idiot!

59

[Moderator Hat ON]

Cool it, Scylla.

[Moderator Hat OFF]

60

You’re right Gaudere. My apologies. I regretted that last post almost as soon as I sent it. I find this kind of hoax particularly reprehensible, and I’m still a little peeved about having been called a pitiable, racist, insane, liar a few posts ago, but that doesn’t excuse my replying in kind.

Barring anything substantive coming to light, I’m through with this thread.

Again Gaudere, sorry about that.