Remember the part in the titanic when one of the men called out to the people floating after it was silent, "Is there anybody out there?' 'Can anybody hear me?" I don't know why, but that phrase sticks in my head and rings in my ears so much that I think I will make it the new theme sentence of my life. I also hear the part where Molly was in the life boat and said, "Those are you men out there." These two phrases haunt me to the core when they pass through my mind. I guess being a person who would risk my own like to save someone else just makes it hard for me to process these parts of the movie Titanic.
I have to be truthful reading the above is how it really is when you are chronically ill. It doesn't matter how many blogs a person writes, how many times you try to explain it to people, how many times people witness an ill person being ill, it just seems that you are never going to get anyone to understand, unless they live it and possibly if they take care of someone who is ill, even then there are people who just can't get it. Marriages break up, friendships split apart, jobs are lost, etc. It saddens me to no end. I try to explain things in terms that I think are easy to understand, but it seems it still doesn't matter. I feel like I continue to beat a boulder with a child's wooden hammer trying to chip away at little pieces of the living with illness but it always seems the hammer whittles away before the boulder has a dent. In my head trying to explain it makes sense and when I write it I think it does, but I wonder how much of it is misunderstood.
I have said many times before that I write this blog for therapy. It is cheap therapy and it helps me to dissect little tiny pieces of what I go through. It is much cheaper than a therapist, which I am pretty sure if I went to, I would being the therapist to them, so I continue to write. I need to have something to release all of this pain and agony out on, not only for me but to help others who live the same as I do. Rich is a great listener, but I am really careful to let it all out to him because all he does is worry. He is deeply affected by illness so I must admit I even shelter him from some of what goes on with me on a daily basis. It is harder to see someone you adore in pain over your illness. This is the hardest part for me, not the illness, but watching my family suffer.
Today I wrote about how Mrs. Romney looked as she spoke last night while I am pretty sure she was standing there experiencing many symptoms, none of which any of us could see, or ever begin to understand. Who knows maybe her eyes were not working well as MS affects the optic nerve of the eyes, maybe her muscles were weak as she stood in the same place for so long without sitting, etc. I have a deep understanding for what she is living with on a daily basis as I do for many of my chronically ill friends. What seemed like a simple speech to those watching was not a simple speech to her, believe me.
I write this blog. I try to help others understand but I know they don't. When I think about it on days like these I become very frustrated. I want to quit everything and just run away. The misunderstandings of being ill and the world are too much for me to handle. I contemplate deactivating my fb until after the election because I can't take the divided and bitter atmosphere of the office that is suppose to be respected and now is just a game we play, back and forth nonsense, accomplishing nothing except more hatred towards one another. I don't think this is the way it is suppose to be. (I don't need people telling me not to leave fb, really so please don't). I am frustrated for the lack of support for those who are chronically ill. I a frustrated to no end with politics and try to avoid it as much as I can. Stress for the ill can lead to flares and I am not willing to argue what I believe with people who believe what they believe as I think we are all entitled to our beliefs and cannot change one another by fighting about it.
The other day I was watching the View and Robby Benson was on and he was talking about how he had a heart condition when he was acting years ago. He was talking how he had to hide his condition because in the world of acting if you were sick you were done. No one would hire you on because you would be a liability to the companies you were working for. This is the reason that even today Hollywood never comes out and admits when they are ill. Paula Abdul "came out" the other day on Dr Oz with her "secret illness" as she called it, Reflex Sympathetic Dystrophy. It saddens me when stars like this come out. It just shows you how chronic illness comes with a tag attached to it. How unaccepted it is by the world. How can this be? How and why should we be so embarrassed to admit when we are ill? I don't think I am weak because I am ill, in fact I feel even stronger because of it. It has taught me courage. It has taught me how to fight and how to live and know what does and doesn't matter. I am thankful for my illness and quite honestly if I had a chance to change my life and never have had chronic illness I would still want it. It has made my relationships stronger with the people whom I know truly love me and it has made me a better person. I just wish everyone could understand, but for some reason I don't think that is ever going to happen.
I end this blog with a sigh today. I have nothing more.