The groom has ALS (Lou Gehrig’s disease in the USA, motor neurone disease elsewhere)–and has had for 19 years. But disability was no impediment to true love. May the happy couple have many years together.
The bride wore an ivory gown, the groom wore a black tux with an ascot to cover the trachea tube that assists his breathing. Joan’s son Joel walked her down the aisle; Dickie’s son, Bryce, was the best man. Joan’s daughter, Sarah, was the bridesmaid. She and the best man lit the unity candles. The rings were put on Joan and Dickie’s hands by Joan’s six-year-old grandson, Brandon. The recessional was “My Heart Will Go On.”
Dickie and his bride bely the usual meme promoted by assisted suicide advocates that ALS is a living hell worse than death, and indeed, that very difficult nature of diseases like ALS illustrate why ready access to assisted suicide/euthanasia should be considered “the ultimate civil right.” And it got me t0 thinking about an alternative universe in which assisted suicide/euthanasia were standard practices, a different world (that assisted suicide advocates are trying to gestate) in which people with ALS and other disabling and terminal conditions are encouraged–explicitly through health insurance funding practices or more tacitly through cultural values–to avoid suffering through assisted suicide. First, this hypothetical patient (not Dickie, this analysis is not personalized and he has not had depression) would not know he would live decades with the disease, since most do not. Second, this hypothetical patient would not have known that true love was in his future. Third, this hypothetical patient might, in a down time, have exercised “choice” and not lived to see the happy day.
The story is also about the difficulties experienced by people with disabilities obtaining good health insurance. This is a problem we need to fix, but it must be tackled in the context of promoting a robust sanctity/equality of life ethic to govern health care in which all lives are held to have equal value. Otherwise, we might fall prey to the duty to die impulse of nationalized and/or managed health care because patients whose care is expensive might find themselves rationed out of treatment–but, as in Oregon—compasssssionateleeeey offered the poison potion.