Re: I just got another constructive criticism! HA!

From: Lin (j.vermey@xtra.co.nz)
Wed Dec 5 13:25:20 2001


At Wed, 5 Dec 2001, cathy:- wrote: >
>Oh, boy, Lin, "denial isn't just a river in Egypt!" Your family is
>seriously delusional about the extent of your injuries and your
>prognosis.
>
>Here's my suggestion, which might not be a good one, but you can think
>about it. Write a letter to your relatives. In it, make sure you
>include the following things:
>
>1) You are not sick, you are INJURED. What has happened to you is a
>rare complication of surgery. If any of them have abdominal surgery,
>whether for appendicitis, ovarian cyst, hysterectomy, c-section, etc.,
>then they will be given consent forms to sign that include the
>possibility that they can also be injured by surgery. Your advice is
>that any of them faced with that decision think long and hard about
>whether the surgery is necessary. Adhesion injuries can also come from
>poor surgical technique, and so anyone requiring abdominal surgery
>should make very sure that the surgeon is suitably careful not to put a
>patient in any more danger than necessary.
>
>2) Adhesion injuries are essentially untreatable. An acute
>life-threatening complication of adhesions is a bowel obstruction. This
>can be treated with surgery, at the cost of more adhesions down the
>road. Surgery to cut adhesions can be done, and it will "work" for a
>few hours. But then the surgery to cut the adhesions itself causes more
>adhesions.
>
>3) Your doctors have told you that you have perhaps five years left to
>live.
>
>4) Being subjected to large amounts of negative attitudes, stress and
>criticism over extended periods of time have been scientifically shown
>to weaken the immune system, damage vital organs and to amplify the
>experience of pain. In order to maximize the time you have left on
>earth it is important to avoid negativity.
>
>5) Whether you live one another week or for another 60 years, you intend
>to make the best of every moment and to make the best memories for John.
>
>Given all of those things, the following are the new groundrules when it
>comes to dealing with Lin:
>
>1) There will be no criticism of your abilities to engage in physical
>activities. You have had 2 miscarriages that your doctors attribute to
>engaging in activities that were too strenuous such as hanging out
>laundry. You find the notion that a grandmother would badger her
>daughter to engage in activities that have already killed two of her
>grandchildren to be particularly revolting. [ok, maybe that last line
>was was over the top as far as confrontational.]
>
>2) There will be no criticism of your weight. You have no large
>intestine, and your small intestine is prone both to shutting down
>spontaneously for an unpredictable amount of time and prone to being
>blocked by adhesions at any time for any length of time.
>
>a) Because of this you could face a crisis at any time that could result
>in death by starvation. So you NEED an extra store of fat to carry you
>through these times that you cannot eat.
>
>b) Also because of the severe damage to your digestive tract you have
>little choice in the matter of what foods and in what quantity you can
>eat. It is far more important to eat foods that will prevent
>malnutrition, and if that entails foods that are too high is calories
>than that's just the way it is.
>
>3) Because of the extensive injuries to your digestive tract you are
>severely limited in what foods you can and cannot eat. If your
>relatives will not provide food that you can eat during social
>activities then you will be forced to skip them entirely, or to come and
>stay for a very short time.
>
>4) There will be no criticism of your appearance. You are in constant
>pain, and use large amounts of narcotics in order to bring the pain down
>to a level that you can tolerate. Wearing comfortable clothes allows
>you to use less medication. If you are having a bad day and just don't
>feel up to it, or if the medications' side effects leave you too shaky
>to do your hair or makeup then that's just the way it is going to be.
>
>5) Likewise on those days when you find the energy to dress nicely, do
>your hair and makeup, a simple comment about looking nice will suffice.
>Accusations that you are faking your injuries because one day you put on
>makeup will not be tolerated.
>
>I think that you should also detail all of the hurtful and unsupportive
>things that your family has done or said to you over the years. Now
>this is really important -- DO NOT include ANY opinions about what
>ANYONE ELSE was thinking or feeling when these things happened. Say
>something like, "Mom, last Spring when you said I was ugly because I
>wore my sweats rather than the outfits you bought me it really hurt my
>feelings. The waistband of those pants dug into my belly and they would
>be agonizingly painful for me to wear." See, everything there is a FACT
>that YOU know. Avoid saying something like, "Mom my feelings were hurt
>because you were too stupid to know that those pants you brought would
>be agonizingly painful for me to wear." Or "I can't believe that you
>hate me so much that you would try to force me to wear clothes that
>would be agonizingly painful to wear." See -- you don't KNOW whether
>your mom is clueless or malicious or what. In fact, you really can't
>know who in your family is malicious and who is clueless. Detailing
>exact examples of inappropriate behavior that will no longer be
>tolerated just avoids that issue. If they are clueless, then detailing
>their appalling behavior in appalling detail should fix it. If they are
>malicious then it makes it clear that you will no longer be messed with.
>
>Then you close by saying that these are the new groundrules of relating
>to you, and that those people who are not willing to follow those
>groundrules are not allowed to have any further contact with you. If
>they plan to abuse John at your funeral then they are not welcome there,
>either. [ok, that last part is a bit over the top, too...]
>
>And the last step of the plan -- don't just dash off this letter right
>away. Go over it with John over several weeks. Other friends, too
>(especially people whose opinions you trust who know your family.) Maybe
>even run it past some of the people that you have met here. You are
>drawing a line in the sand and telling your family that they will not be
>permitted to step over it. You want to be very very very precise about
>saying exactly what you mean and not any less or more.
>
>Ok, like I said, if this is a stupid idea, then just ignore it. If you
>like part of it but not all, then simply take what you like and ignore
>the rest. You and John know your family best and what will and won't
>work...
>
>And another thing... If something happens to John, then your family is
>your next-of-kin. If you are incapacitated, then they get to make
>decisions about your medical care. Given your description of them, I
>think this is a very bad idea. You should make sure that there are
>airtight legal documents that appoint people that you trust (friends,
>in-laws, etc.) as the people to make your medical decisions should
>neither you nor John be able to.
>
>At Tue, 4 Dec 2001, J&L VERMEY wrote:
>>
>>Hey, it's me,
>>
>>My sister just rang. That was ok, it was nice that she took the time to give me a call - and I told her that I appreciated her taking the time out in her busy day.
>>
>>But she told me she is concerned about the fact that I am looking up all those things I am on the internet, she thinks it is not good to dwell on my illness! She doesn't want me getting any funny ideas! And that I need to concentrate on other things besides my illness. She doesn't think it's healthy what I'm doing and I shouldn't dwell tom much on the fact that I am ill!
>>
>>It's pretty obvious to me that they (my family) have no idea just how much my illness and my pain effects my life!
>>
>>I explained to her that I felt it was important that I educate myself on my illness, that I was simply unwilling to continue leaving my welfare up to my doctors she still seems to believe that the doctor is always right - and that I should do what they tell me to - explicitly - and without questioning it! I told her that in my doctors opinion I would probably be lucky to survive until I was 35 years old and that I'm 31 years old now, so that would give me only another 4 years! AM I SUPPOSED TO JUST LIE BACK AND ACCEPT THAT KIND OF BULL SHIT? NO WAY!!!! I REFUSE TO DO IT! I've got far too much to live for! I'm not ready to go yet, nor am I willing to leave John to cope on his own.
>>
>>I don't want to miss out on anything - not when I've already missed out on so much! And I want to make the most of my life!
>>
>>Right! That's done it - that's put the FIGHT back into me! (I guess I can thank my sister for that!)
>>
>>I will continue to go on the net to do my research - to find out all I can so that I can learn how to improve my quality of life, and make my life a little easier.
>>
>>And I've also decided that if I am in the family way - that I will not tell my family straight away - I'll wait at least until I'm 1/3 of the way along - that way I wont have to deal with anymore unwanted comments. And if later they get upset - I will tell them plainly - SORRY, BUT IT IS NONE OF YOUR BUSINESS, IT IS MY AND JOHN'S BUSINESS!
>>
>>Right! I feel SO MUCH BETTER!
>>
>>God bless little sisters!
>>
>>Love,
>>
>>Lin
>
>--
>cathy :-)
>

--
Oh Cathy! How I love you!

Thank you so much!

You have moved me in ways I can hardly describe!

I will think long and hard about what you've said. And I will talk about it with John. I think he'll totally agree with you!

You know he's gotten to dislike my parents so much that he hates it when we have to go and visit them. He always ends up feeling sick before hand, and ends up with a terrible headache.

My family has no idea what kind of impact my pain etc has on John. He suffers to but MOST people do not even consider that possibility!

My family just think that John hasn't provided for me enough - since we're living in an unfinished home. They're disgusted with us because we care so little about MONEY and material things. They accuse him of only thinking of himself - that he has nice things, and that I always come second. John absolutely loves being in the fire brigade - and he spends time there on Tuesday evenings as well as a few hours on Saturday afternoon's - I support John doing this - I know that he needs to have this in his life - he'd be miserable without it - plus he needs to spend some time on something he enjoys where he does not need to worry all the time about me. John worries about me all the time - he has already sacrificed so many things for me - and for my welfare. He pays a pretty high premium for my health insurance, he pays for my medications which are not subsidised, he always thinks of me before he thinks of himself, if there's anything I need - he gets it for me. He's always there for me - he rings me up almost every hour on the hour when he is at work to make sure that I am alright. He wears a beeper especially so that should I need him and he's away from the phone that I can beep him - and he rings me back straight away. If he can't take me to the doctor he arranges for his best friend to do it - and he gives him the money for the petrol. He cooks for me when I can't. He cleans for me when I can't. He hangs up the washing. He encourages me to keep on going when i don't think I can. When I'm in theatre for another op he's waiting till I come out - and he holds my hand when I'm in pain. He never complains. NEVER. He does the grocery shopping. he pays the bills. If anything unpleasant happens and he thinks I can't deal with it he hides it from me - until such a time that he thinks I can handle it. He loves me, no matter how I act, how I treat him, or how sick I may be. So many people always comment on what a terrific guy I'm married to - they marvel at his strength and his loyalty. But my family refuse to see any of it.

And that hurts.

I'm going to tell John exactly what you said - I'll get him to read it - and I'm going to ask my solicitor what I can set up so that if anything were to happen to John that my parents would not have the rights to make those decisions on behalf of myself - and that we appoint somebody else.

Thank you. You're a darling.

Love,

Lin


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