Do yourself a favor read the whole damn thing.
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There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months\u2019 difference. It retails for about $14,000 a year. That doesn\u2019t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.
\n\u00b6 No, thank you. I hate being a drag. I don\u2019t think I\u2019ll stick around for the back half of Lou.
\n\u00b6 I think it\u2019s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don\u2019t talk about how to die. We act as if facing death weren\u2019t one of life\u2019s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative \u2014 not governing \u2014 in order to be free.
\n\u00b6 And that\u2019s the point. This is not about one particular disease or even about Death. It\u2019s about Life, when you know there\u2019s not much left. That is the weird blessing of Lou. There is no escape, and nothing much to do. It\u2019s liberating.
\nvia The Good Short Life With A.L.S. – NYTimes.com<\/a>.<\/p><\/blockquote>\n","protected":false},"excerpt":{"rendered":"Do yourself a favor read the whole damn thing. There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months\u2019 difference. It retails for about $14,000 a year. That doesn\u2019t seem worthwhile to me. If I let this run the whole course, with all the human, medical, … <\/p>\n