& at the bottom for everyone - illness is a difficult thing...

[Guest guest]

Dear

Thank you for taking time to write me and thinking about my situation with my parents, trying to find a solution and way for me to "make peace" with them before I leave. You are very right when you say that "help in healing any amosity and hurt feelings for all concern here. This is some-thing I think you wished that this emotional healing would take place even months ago. You may wished that this would happen more than sarcoid go away" This is very perceptive of you to pick up on , and y es at this point I do long for my relationships with my mother and sister in particular to be resolved before I leave for Kuwait again even more than I would wish for my NS to just disappear all of a sudden. I am leaving with such hurt feelings and I know that when I leave I may well not return for a very long time, and iwth these feelings, I may not return at all as a matter of fact. It may well be the last time that I see my sister actually or have the opportunity to speak to her. She has always been very dear to me. I know that I will always talk with my parents, but once I go, the issue will not be resolved, it will lay cold so to speak. But at this point after somethings that have happened yesterday, and these weeks before I have decided really to just let the subject go, it is hurting me to badly and they obviously have no desire to resolve the problem. I can not resolve somthing by myself. If htey do not desire a relationship with me, or do not want to understand whta I am going through there is nothing I can do, if they do not want to be there for me, what am i to do? It is not their responsibility to be there for me. So I am just going to let it go because it is just tooo painful and I have been up all night long crying over it. I just want to leave. They have been very kind to have us here and put up wtih my seizures and tias and the kids in the house all this time. We really need to leave and give htem back their space now.

As for having them talk to Dr or someone.... well in October when I was hospitalized for a very bad TIA, the neuro did explain to my mother (my dad of course would not come to the hosptial to see me) that it was a TIA and about my condition, my mother looked at her like she was insane. she asked her why she would say that? that is why she explained things to her. but still when i came home, my mom did not bring me home, she did not stay here to help me at all that weekend, she left me here alone with the kids, to cook and everything by myslef. she acted as if nothing happened, and it didnt change anything. in fact it was from this point on that things started to get worse and worse. and i have tried to get my mom to come to my appts ith me, and especially to my specialist appts with me in cincinnatti, she will not go with me, there is always an excuse. Thanks for the ideas , I know you understand how much this means to me because you have felt it with your own family. I am sorry that you have.

Illness is a difficult thing. It makes people feel obligated I guess, guilty when they do not do what they are supposed to do sometimes, others just do not feel a responsibility or act just downright resentful and nasty to the person who is intruding on them with it. It certainly interferes wtih the life plans of others, I guess the thing is, it is suppose to come, the intrusion/interference that is, at a certain stage of life, as a parent becomes elderly at a certain point in an adult childs life, even then, some children do not accept the burden of illness or aging well and gracefully, lovingly and caringly. What is the ill or aging person suppose to do? What does the person having a seizure on the floor suppose to do when soemone is screaming at them? or people just walk by them? Or in the case we are talking about in this group we just do not get the help in the home that we need to keep our disease from progressing? In my case I have developed 7 new lesions during my stay in the states this year. That is the result of pushing myself too far. That and the vasculitis, the TIAs and seizures, the active meningitis. So people feel this guilt, resentment, obligation, etc, these negative feelings, and deep down just want to move on with their own lives yet at the same time I imagine feel disgust within themselves for having those feelings. So it is so emotionally complicated that they just want rid of the person who is causing them such emotional turmoil so that they can move on with their happier days, go about their lives without facing illness everyday. When you add into the mix situations with us, who look as we do, so healthy and lively. then often times people want to believe we are lying, making things up, exaggerating things. Oh things arent that bad? How do you know you have meningtis? Who says so? Add in lack of education of the public, like I have said about things like seizure types, Oh you are not having a seizure, you didnt fall to the floor convulsing! You are lying or making it up, pretending because all you are doing is pretending you cant respond or talk, or twitching your face or pretending your arm is hanging from you. Our weakness and our pain is invisible. They equate our vascular headaches to their own, "oh I have a headache too". I suppose their is no blaming them in reality because what people do not know they can not understand. People live in their own worlds, their own realities, their own views of understanding and perception. To them, we are just laying around complaining all day. They can not understand our point of view or what we are feeling , it is impossible until they themselves are stricken and we wouldnt wish that on anyone.

So it is an impossible situation.

One that I give up on.

Sorry for the tyride.

Kim

NS Moderator