Laura Valenti decided to starve herself to death. It took two months.
Her mind was deteriorating, but her decision wasn’t crazy. She had Huntington’s disease, and was bound to get much, much worse. There’s no cure or treatment. Laws being what they are, Laura had no other real option. What she did was brave.
With Laura through this ordeal was her daughter Danielle, around thirty. Huntington’s is hereditary, but until this, Danielle had no idea it was in her lineage; turns out Laura’s biological father was, well, not part of the family.
So Danielle’s chance of having the Huntington’s gene was 50-50. And if you have the gene, your chances for an eventual horrific decline and death are 100%; with nothing you can do except wait for it. Some with Huntington’s in their families eschew testing, preferring not to know for sure. But Danielle decided to be tested. This too was brave. She tested positive.
How much time she has, no one can say. But it’s a lot less than for others her age. Yet more than for the average person throughout history. And every one of us knows our time is limited. It’s the great fact of the human condition, and in spite of it, we live our lives. That’s what Danielle is doing. She’s moved in with her boyfriend and they’re talking of having children. “I’m going to live,” she said. “This is my time to live.”
So ended the article in the local paper about Laura and Danielle. It moved me deeply.
The story noted that proposed NY legislation would permit physician-assisted suicide, for mentally competent patients with less than six months left. But the Catch-22 for Huntington’s sufferers is that by the time you have only six months left, you won’t likely qualify as mentally competent. So in no state with assisted suicide would it have been available to Laura. That’s why she starved herself to death.
Our modern medical and health care system is great, except for the wee fact that it, in effect, sometimes tortures people to death. A big reason is because attitudes are still shaped by underlying religion-based shibboleths; that it’s God who should decide these things, and we humans shouldn’t presume to trump him; that life is God-given and should only be ended by God.
Never mind that our entire medical system, nay, our entire civilization, is all about taking control of our own fates, not leaving them to the not-so-tender mercies of a Nature that gave us – or was it that “loving” God? – the horror of Huntington’s Disease.