I will NOT lay down and let some bacterium or bureaucrat kill me.
Click to viewThe above video clip is NOT me... this young woman is only three years in. I'm twenty years in...
I've been working on a non-profit foundation to promote Lyme Disease research for the better part of a year. Because of the political climate with regard to health-care "reform," I find that even if I were to collect billions of dollars in grant money... nearly no groups will be able to accept the money because of bureaucratic red tape, legal concerns both state and federal, taxation issues and codes, and general bullshit. Those who would take the money are in "big pharmaceuticals" and we would have no control over how the funding is allocated once they cash the check. So, I am going to shift the focus. No one can stop me from collecting funds, only make it difficult if not impossible to give that funding to any private institution willing to meet the criteria: a more precise and definitive testing technique along with a multi-spectrum treatment protocol flexible yet targeted for covering the multiple stages and incarnations of the disease. However, I can give grants to individuals, provided that the funds are below a certain threshold, without incurring the wrath of the I.R.S. Therefore, instead of direct research grants, I'm going to institute a "Lyme Disease Assistance Program" to provide those who are completely disabled, as am I, and who are low income, as am I, with an occasional stipend to enable them to get more of the care they need and hopefully better care than that to which they currently have access.
Every time I go online, it appears that all I do is blab on FaceBook. I spend a lot of time there... because it keeps me from crying, beating my fists against the wall, and blowing my brains out. I keep that window open while I do my research, while I watch films of my peers, when I read their stories, when I see doctors censured and condemned for practicing medicine against the will of the insurance industry, and when I become enraged over the autopsies... and though you'll never hear it on the news those postmortems are increasing at an alarming rate. I went on an online journey a few months back. I sought to reconnect with people who knew me twenty years ago before I got sick. Everyone I know now treats me like an invalid and that's almost as bad as the Lyme itself. "Invalid." I despise the word because it doesn't just mean physically disabled, it also means "deficient in substance or cogency." But as angry and ill as I may be, this is not a pity party. It's a fight to the death. When something is trying to kill your spirit, not just your body, who do you want to be there with you? Do you want people around you who say things like "try to take it easy," "you're pushing yourself too hard," "you're too sick to do that anymore," or "you're just making yourself worse."? Or do you want to associate with people who say, "I remember when you would've kicked its ass," "get up, you've never taken this shit before, why are you laying there and taking it now?," or "you used to run a mile in 4:1348, get back there," "the bitch in you is still there, bring her out of her coma and fight!"
"Cut me, Mick... Cut me."
I hide behind the medical jargon that describes my condition. To paraphrase George Carlin, euphemistic language allows us to bury the pain as deeply as can be done. No euphemisms. No gloss. No hiding behind the Western Blot, the Elisa, a T-Cell count that has no meaning out of context, or a symptomatic parameter bell curve.
More to come... much, much more.