Locked in Butterfly

Over the weekend, I watched the movie, "The Diving Bell and the Butterfly ". It is a movie, about a man who has a stroke, and Wakes up in a hospital, to find that he has been diagnosed with locked in syndrome (LiS ). The movie is French made, and it was a little too artsy for my liking. Cutaways to scenes of an old diving bell suit, in dark and murky waters, and scenes of icebergs crashing into the ocean, I know their meaning, is supposed to be symbolic, but I could have done without them. . 

The movie, did however, bring back memories of my early days in the hospital. There was one scene, which was especially poignant, where two men came into the LiS patients room, and spoke as if he wasn't there. That often happened to me, and it is something that made me really angry. I would hate it, when people would come into my room, and talk about me, as if I wasn't there. Especially, when it involved making some decision, that directly effected me. It happened way to often. 

The movie, based off a book by the same name, is a true story, about the editor of  Elle magazine, who was diagnosed with LiS, after his stroke in 1996. While there are many aspects of the movie, which I felt paralleled my experience thus far. There were as many that didn't. He had a complete version of LiS, and was only able to move his left eye. Although I am able to only move my head and neck, and some of my fingers and toes, I feel fortunate that I have this much movement. 

He dictated an entire book, by blinking, as the alphabet was read to him. If anyone could have benefited from the use of one of these machines, it would have been him. 14 months it took him to write the book! 

Regrettably, I must admit, that I too wanted to die, like he did in the movie. I would lie awake in my bed, and pray for God to take me away. Those first month's were hard. But eventually, with the help of my wife and daughter, I found a new hope for my life. 

Although I didn't find this movie, to be all that great. I do recommend that you give it a view, if you want to get a feel, for what this condition can be like. It definitely will do that. And it was only $3 on Ebay. 

As I have said on this BLOG before, many of the conditions reported as being common, in traditional cases of LiS are in fact, common for me. However, I do experience additional conditions, which are unique for my case as far as I know. Our two cases are noticeably different, perhaps that is because we have different levels of this condition. 

I suppose I may have liked it better, if I spoke French. Unlikely, but I guess there's a chance. But I'm not going to learn French, just to find out. Celia did say she had read the book, and she thought it was a little slow. I've always heard it said, the book is always better than the movie. I guess this is the exception to that rule. Ether way I don't think I'll be reading the book anytime soon. I'll take Celia's word for it. 

I will keep reading and watching titles that concern LiS until they make a movie about me. That may be awhile, so I don't recommend that you hold your breath! 

Another point made in the movie, which I related to, is when they were giving him a bath, and the inner dialogue, spoke of how much he felt like a big baby. I have often felt the same, when getting a bath, or having my brief changed after soiling myself. Some days I feel like a great big, helpless baby!