Nearly daily, I research the internet for articles that can educate me on new developments into LiS. Being the rare condition that it is, so too is the funding, and thus the interest in discovering a fix for this life-altering curse is almost nill. There are the many articles that give the same information on how rare LiS is, and how bleak the prognosis is for its victims. It’s almost as if they were cut and pasted. Sometimes though, I stumble across something that gives me hope, even makes me cry tears of joy. These rare gems do of course hawk their wares, trying to sell you this or that. I especially dislike, it when the website asks if I will accept their “cookies.” Not accepting means that I won’t be able to read the article. I know I probably shouldn’t, but I usually do. I thought that just my being on your site meant that I was accepting your “cookies.” But more importantly, even if I could I didn’t accept, regardless of how interesting your article seems to me, the mere fact that you are asking me, probably means that somewhere in your seven pages of “Terms of Service, ” is hidden away my agreement to a whole bunch of stuff I shouldn’t agree to. And as much as I will miss him, even though he can sometimes annoy me, I think I just gave up the rights to my firstborn child! What they do in their articles which is so great though, is leave you with a longing to be so much more than just a patient in a bed. A belief in a future. A desire to overcome hurdles. What’s odd to me, if not a little frustrating, is that all the research appears to be coming out of universities and research centers from abroad. I really don’t care where it comes from. It’s not me trying to be all nationalistic or anything. The very fact that I have not yet come across a single article that is American born, means to me that it is all about the money. Finding a solution to this terrible affliction doesn’t mean millions of dollars to some special interest. And as long as that remains true, slow and few will be the discoveries, which may someday be what lifts me out of this bed. I hold out hope, that soon I will read about a discovery, that breaks the chains which keep me prisoner to this cruel master I have spent nearly two years with. I at least pray for its arrival in my lifetime. That one day soon, I hold family members and friends, who have given me their support through this all. Someday in the not-too-distant future, I will once again feel the cool green grass or warm sand between my toes. If I close my eyes and concentrate hard, I can almost bring myself to one of those places, but no matter how good the home movie in my head is, it doesn’t hold a candle to having been there when the movie was made!
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