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

Great Debates
1

We all have ideas, sexual orientations,certain levels of talent and other characteristics. Even a life expectancy. If you deviate from “norms” in many areas, life gets difficult, but interesting.

I have been on a downward health spiral for years. No, no! I do not have AIDS or anything like it. I have a rare brain disorder that is verifyable. (Not made up or psychosomatic)And, in a year or so, my ability to function is going to be really low. Top clinics in the country gave up. As I love to say, “When Mayo doesn’t answer your e-mail, you are in big trouble”.

I have two kids under 9. My spouse has wrecked his career helping me with my responsibilities and my problem. We live well because he is gifted and would live better without me. This illness is really hurting him. He used to look like a blond movie star and he now looks like a sad, old man.

Despite what the gov’t and insurance companies tell you, THERE IS NO SAFETY NET! The system is like the Apaches had except we don’t leave the sick in the cold. Instead we let them go broke, lose their identity, hurt and rely on those who love them and have doctors lie to them until the truth is so obvious that the “smoke blowing” becomes a joke. For the questions below, assume that medical doctors have told me it will not get better and even discussed “black pills”.

If you had my problem, what would you do? NO VIOLENT SUGGESTIONS ACCEPTED. I DO NOT WANT TO MEET MY MAKER AS A MASS MURDERER OR CREATE ANTIGUN HEADLINES!

End it in a year and let the family go on?

Hang in for a cure?

Spend money to be happy, or save it to start over with a cure? Already bought Corvette, go to bars, etc. Should I spend more to enjoy myself?

Commit fantasy sex acts? (Hubby is open minded.)

Do you think I will panic?

How about the Hemlock Society?

Special K

2

At a time when genuine grief seems to be this board’s currency, I am still truly and sincerely sorry that you’re going through this. The one glimmer of light is that you have a chance that many don’t get; you have time to do all those things that you always intended to, to “tie up” your life; to make sure that your family have nothing but good memories. I’m trying really hard to make this sound sincere, but it’s not easy given my comparative lack of experience. For that I apologise.

My thought: live as much as you can as long as you can. Do everything that you always wanted to. Ask your family what they’d like to do; basically, have the happiest time you can. When things change for the worse, you have to decide what you want. Personally, I’d want to pick my moment and agree it with my loved ones, then find a way to go and leave them with only memories of a happy, alert person. I wouldn’t ever suggest that you do that. That is entirely and solely your decision.

If I was in a similar situation, this is what I’d do: run up as many debts as I can. Open ten, twenty, thirty credit card accounts (in my own name only). Make sure that whatever I do, my partner/family will never be held financially responsible. Then I’d blow that money taking everyone I care about on a cruise around the world. I’d hire a car and drive across the US; I’d hit every place in Europe by train; I’d cruise down to Australia. I’d jump from planes, swim with dolphins, go diving in the Great Barrier Reef. I’d safari in Kenya, get plastered in Prague, anything and everything. And I’d make sure that everyone I cared about was there at all times. I’d ask that whatever happens, they use that time to remember the good things, not to focus on the bad.

I’m sorry I can’t express this more eloquently than I have.

3

You could always do what Joe Banks did in Joe Versus the Volcano. :slight_smile:

(Sorry. This sounds terribly serious and tragic, but I just couldn’t resist. I love that movie.)

4

Mattk, running up debts just because you know you won’t have to pay them sounds like pretty unethical to me but I guess those are the times we live in, when sticking it to others if they can’t catch you is OK. But I’ll tell you one thing: I am proud my parents are not like that and I sure wouldn’t do it to my children if I had them.

Special K, I am sorry about your problem and I do not have any sweeping advice but I do have one thing I’d like to tell you: Please never feel like you are a burden to your family. It sounds like you have a good family and they are there for you. Be happy about that and appreciate it but do not feel you are a burden. You are not a burden, you are the reason they can find satisfaction in being there for you just like you would be there for them if the situation were reversed. You would assume the responsibility happily and so do they.

It is not living longer that counts but living a fulfilling life. You seem to have a good family that loves you. I would rather live half the time in that situation than twice the time being lonely. Think about it.

Just live normally, try to make the best of it and leave your affairs in order. I know it is difficult to be aware of the time we have left but this gives you a chance to make the best of it and leave everything in order. If you were given a choice would you like to die in an unexpected accident? Wouldn’t you prefer to have the chance to arrange everything before you go? As you see everything has a good side.

I do wish you well.

5

This is impossible. Your estate would become liable for your debt - your family. At the very least, they would be sued to recover damages, and the facts of the case would probably constitute fraud, landing them in criminal court.

Were I in your position, I would make a short list of things to do and see. My list wouldn’t be difficult to fulfill, and I would do a lot of thinking to narrow it down to some really important experiences I wanted to have. I would minimize the impact of the list on my family (not expensive, not burdensome to them). I’d do the list, and then kill myself painlessly. I would include my family in all decisions about the list and killing myself. I would make it clear that these are my final wishes alone, and they are not to be involved in my suicide, which I would probably do away from them. Take a last trip somewhere and do it on the beach, that sort of thing.

6

hansel sez:

[lawyer hat ON]

  1. If the debts are personal, they will be taken out of an estate, but if the estate doesn’t have enough money to pay off the debts, the heirs do not “inherit” the debt, and cannot be sued for it. 'Course, this is hypothetical, as it is severely difficult/impossible for a married person to obtain individual liability for most debts.

  2. Under no circumstance, unless they were complicit in the fraud, will the heirs of a frauddoer be hauled before criminal court. The common law system does not believe in the “sins of the father” being visited on the “sons”.
    [lawyer hat OFF]

Sorry for the off-topic comments, but you need to know your options, Special K ;). Seriously, I do not feel wise enough to advise you, but I will be thinking of you.

V.

7

Okay, let me rephrase. I’m sorry I suggested something unethical, but I don’t have the money to treat my family the way I would like to in this situation. My idea was perhaps not the “best” way to proceed - sorry.

The point I was trying to get across, albeit in an ill-advised way, was that if I was going, I’d want to blow everything to treat my loved ones to the time of their (and my) lives.

8

The sex fantasies sound good to me.

If it is not a personal intrusion, may I ask as to your diagnosis?

9

mattk, we all have our share of not-so-good ideas from time to time and I am no exception. It is better if we can catch them in time though :slight_smile:

10

Special K, I’m truly sorry.

I think you have to decide what is most important in your life. Only you can decide that. Several people have mentioned partying it out, going to Kenya etc. Perhaps that’s right for you. In my case, family and accomplishments/legacy are most important, so I’d split my time between the two.

Ultimately, you have to decide what is most important to you. I think most people waste their lives and never figure that out. Maybe there’s a positive thing here in that this is a wake-up call. Figure out what you really want out of life and do it.

One more thing: If I were in your shoes, I would not believe the doctors when they say it will only get worse. I would do my best to believe that tomorrow it’ll all get better. And keep pushing the doctors to make it better. I know that’s easy for me to say, but please try to stay positive and push forward.

11

I have a brain chemical problem that is very complex. They describe it only as a bundle of symptoms. It is related to ALS (Lou Gehrigs), Parkinson’s, Hodgkins, Epilepsy and a Sleep Disorder. Luckily, tests verified that I had a brain chemical imbalance or most of the doctors would have diagnosed me as having “female hysteria” or as being just plain psychotic.

Doctors, Doctors… The lies and games they play with terminal people should be a crime. Of course, there is an excuse for continuing to tell dying people there is a chance at a recovery to keep them fighting even when there is little or no chance. I have seen so many that I wonder if they are also trying to keep people alive so that they can keep billing for treatment.

There are other outrages also. At a top research and academic facility I travelled to in NY, I had one specialist charge me $600 for an office visit (about 10 minutes of his time) which consisted of him watching me walk and then filming me “falling down”. He then had the nerve to call my husband and ask for my brain after I died. I can go on about my case and even talk about a naval vet my husband knew who went from a strapping 215lbs stud to an 89lb bag of bones while he suffered chemotherapy for internal cancer that they knew couldn’t be stopped, but I need help witht he social issue I posed. It’s too late for me to pick up a hatchet and fun, fun, fun was always more my style than fume, fume, fume.

12

If this disease doesn’t have a name, then it must be the first of its kind.

ALS is possibly auto-immune related.
Parkinson’s, I don’t know.
Hodgkins is a type of cancer.
Epilepsy can be the result of an injury.
Sleep disorders are typically diet and/or weight related.

I don’t see a connection between that “collection of syndromes,” and I don’t know that any are caused by a “chemical imbalance.”

So exactly what chemical is imbalanced?

Is this another example of a “brain cloud?” (credit to tracer).

Or am I the only person confused?

13

I am confused as well, particularly as Hodgekins is a lymphoma, if I am not mistaken (and I very well could be), and not related to the brain at all. Or am I confusing diagnoses?

I too fail to see the connection between epilepsy, Parkinson’s (which is purely genetic, to fill in the missing bit from the last poster’s list), ALS and sleep disorders.

Did any of these doctors actually give you a diagnosis, rather than just listing symptoms. I ask because I might be able to dig into some research and see what is up about your condition.

14

Have you considered seeing Dr. Murray Brennan or Harold Wachsman? Dr. Brennan is tops for treating adult cancer, and for those who want to know it is Fred Epstein for tumors in kids.

If there is truly no hope, do what will fulfill you, but don’t leave your family in debt.

Live out your fantasies, and consider making a videotape of yourself so your kids will have something to look at.

Geesh, what a tough break.

Also, see if you can stack up on some good drugs, in case it becomes painful, no needless hurting.

And, if there is any change for the better, do let us know.

15

I shall write directly to some of the people who want to analyze and cure me. Kudos to them for caring.

I have a rare and unnamed illness. I would list the medical facilities which I visited for evaluation and tests in e-mail to those who expressed an interest. Convince me of your medical expertise and I shall even humor you with records and test results. I certainly do not resent the inquiries but I must state that I have been to doctors who are national experts and have written books on brain activity. They concurred with the dire and terminal nature of my condition when cross examined by my spouse in an office visit. You may be confused since I stated that I had symptoms from those diseases, not all those diseases. My medical knowledge is limited. I promise you that the understanding of the CNS by medicine at this point is also limited. Finally, not to be rude, but what the heck does this have to do with my question?

16

It’s not a “brain cloud”, is it? That was the fake disease the phony doctor diagnosed in Joe Versus the Volcano. :wink:

17

Ask a simple question and get accused of lying. Where did Tracer go to medical school?

18
19

Um, Special K, Tracer was joking. He even added a little smilie face so you’d know he wasn’t serious.

20

The condition seems so rare and new to me that I wonder how good, or bad, a prognosis the medics can make.

I mean if it is so rare then maybe there is a real hope after all, the docs will not have enough experience to call it accurately.

So don’t write yourself off yet.