When I was little — real little, less than four-years-old; probably before that, even, probably before my brother was born, but I still remember this — I insisted that I was going to marry my grandfather. I guess you could say he was the first person I fell for, even if it was in that little kid adulation sort of way. I told everyone who would listen that when I grew up, my grandpa would divorce his wife (my grandma) so that he could marry me. Adults thought this was very funny, of course. Before I started school, my mom explained to me the basic concepts of incest and the law, so that ruled out my ideas of becoming Mrs. Grandpa. But I never stopped adoring him.
On my mom\’s side of the family, it\’s always seemed like he\’s the only one who has ever understood me, or whom I\’ve had anything in common with. He\’s a big reader (up until a few months ago he was still reading several books per week), a history buff, a lone wolf type, but the kindest, most understanding person I\’ve ever known.
There\’s always so much I want to write about him, but I never manage to because I always start crying and can\’t hold it back long enough to get the words out.
Medical science says that during their worst flare-ups, FMS/ME patients experience the same intensity of pain that late stage AIDS and cancer patients feel. That factoid used to bring me comfort because it made me feel acknowledged, at least in the medical world. But now, looking at my grandfather\’s collecting pharmacy at home, with much of it the same prescriptions that I\’ve sometimes had to use and still use, and watching him deteriorate more and more every day, I feel no comfort. I just feel wild despair and anger.
He\’s so frail, only about one hundred pounds now, and god, the cancer is probably about ten or more pounds of that. It\’s literally eating him alive. He\’s still at home. Hospice comes twice a week. I visit three times a week. My family, being my family, won\’t talk to me about what any plans are for what\’s to come. I was furious for what they did to my grandmother against her will, putting her in the nursing home and force -feeding and -medicating her. Despite my family saying they don\’t want that to happen to them, they\’re going to do it to my grandfather. They\’ll say they don\’t have a choice.
I\’m watching this poor man be in so much pain, every day, all day long. Real fucking pain. Not just localized pain, but actual \”body turning against itself and registering as self-destruct\” pain. If I had something to pray to, I\’d be praying that he would die in his sleep, and soon, because I don\’t want him in a home. I don\’t want the pain dragged out. If he\’s in this much pain now, what\’s it going to be like in a month? Imagine living every day with that much pain. I don\’t live every day on a 10.
Other cultures dealt with death far better than we deal. I wish we were apart of one of those. I feel like my heart is flooding over and breaking up.