Ever since I was a small child I have loved the fairy tale The Black Bull of Norway. In the story a widow woman has three daughters. As each daughter comes of age she requests of her mother to bake a cake for the fortune-teller. The two eldest daughters are thrilled when the fortune-teller leads them to handsome, wealthy princes. Certain of her good fortune, the third daughter takes a cake to the fortune-teller who tells the youngest that her fate lies with a great, black bull. The bull carries the girl into a valley made of glass. The bull then tells her that he must go and fight Satan. If the sky turns red it means that Satan has won the battle, but if it turns blue it means the bull has won. The bull tells her she must remain perfectly still or he will never be able to find her again.  Having conveyed this warning the bull leaves the glass valley to fight Satan. Blue and red push and tear across the sky for many hours until at last the sky turns a brilliant blue. The bull has won. In her joy, the girl momentarily forgets the bull’s warning and moves one foot ever so slightly. Realizing her mistake the girl begins to weep. She then becomes the one to quest for the bull which she loves.  To her utter despair, though, she cannot leave the valley. The valley is ringed by mountains made of glass and she cannot climb them. She becomes the servant of a blacksmith who promises to make her shoes of iron if she serves him for seven years. It is at this point I will leave off telling the rest of the adventure in this story and continue with another kind of adventure.

I have been (and am currently in) a glass valley of my own. I have been in this place since I was seven. I am now 27. My Glass Mountain is called Myalgic Encephalomyelitis (ME). Classified by the WHO as a ‘disease of the central nervous system’ ME is more commonly refered to in the USA as Chronic Fatigue Syndrome – a name which I find ridiculous. I am neither chronically tired nor am I surrounded by buff men in camouflage (although I wouldn’t mind being the latter). I am instead impaired with almost the same intensity of someone who has end-stage AIDS coupled with chemotherapy treatments. In my next post I will delve deeper into what ME is and what ME is not.

The reason I am starting this blog is that I want to keep friends and family apprised of my condition. I am fortunate because very soon I will be able to participate in a trial of Ampligen. Ampligen is the first drug seeking FDA approval for the treatment of ME. I know that this medication is controversial and expensive. I know many, many people want to try this medication and because of cost or current living location cannot. I am hoping that by contributing my body to be tested that this medication may indeed be approved by the FDA. Or, conversely, if I react badly then everyone will know that too. I have been ‘serving the blacksmith’ now for 20 years. I am desperate to live. One way or another I will climb my Glass Mountain and I will finally, finally be free.

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