Wednesday, October 13, 2010

Jean's Testimony to the CFSAC Commitee


My Testimony to the CFSAC Committee

by Jean Maskuli on Wednesday, October 13, 2010 at 5:47pm

I keep using the word village, placing it in words and parts of speech where it doesn't belong: I just saw that movie I Am Village. My parents have a Village on the Upper East Side. I love your village.


Apparently, my disease has some unhealthy obsession with community.


My doctor doesn't look at me when he talks. At least, not anymore. When I was twenty he smiled broadly, and promised me a thousand better days. But now, he just reads blood work: Epstein Barr. Elevated. 300% Above Normal. HHV6A. Elevated. 160% Above Normal. Mycloplasma Pneumonia. Elevated. 300% above normal…


I can't write it down fast enough.


Maybe he's grown tired of patients that never get any better. Or maybe it's that I'm getting older and he knows the statistics: Suicide. Mean Age. Thirty-nine. Heart disease. Mean Age. Forty-nine. Cancer. Mean age. Fifty-nine….


Sometimes, they just lie down and never get up.


How ironic it is to have this heart placed beating so badly in a body that is always breaking down. I probably could have ruled the world, climbed Mount Everest, lived for a thousand nights like a Bedouin in the desert, but now, all I do is sleep. When I dream, I dream of cures. When I wake, the bed is soaked.


Night sweats.


Aaron brings me cupcakes from Crumb. You need to eat more, the doctor says. All I eat is frozen fruit. Nothing tastes right, but the cold of the frost numbs my burning tongue, and soothes my scratching throat.


I'm tired of being sick.


I toss around this concept called life in my head. But, my dog is in Heaven waiting by the swimming pool. My grandmother dances like a child in the lawn. My grandfather waves as he grills hot-dogs from the porch.


And my friends, my friends, left long ago are also on their way.





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