Whenever I tell people I am writing a novel, I'm always asked whether it's about ALS.
"Why should you suppose so?" I think back at them, mentally quoting a line from LAWRENCE OF ARABIA in my best Alec Guiness tone of restrained royal outrage.
I am far more than the sum of my illnesses.
The way I see it, who I am today might have been shaped by my illness, just as everyone is inevitably shaped by life experiences but ALS affects far too many areas of my life for me to start devoting even more time to it.
Illness is an opportunity. ALS has robbed me of much, but has also given me much. I would never have gone to Clarion had I not been ill, as I would never have taken the time away from work.
Illness is an incredibly expensive inconvenience. The financial strain does far more to grind one down (and one's families) than the actual illness. Ultimately, even in a country with a healthcare system, surviving critical illness is a matter of financial imperative.
One can have the most loving family and friends and the most positive outlook in the world, but if one can't afford round-the-clock care and life-sustaining equipment...
The financial realities of illness are tantamount to state-approved euthanasia. If Society rejects euthanasia or physician-assisted suicide on moral grounds, yet turns a blind eye to the devastating cost of preserving the lives of anyone other than the very wealthy, I say it is guilty not only of hypocrisy, but of facilitating a de facto selective breeding program the Nazis would have been proud to own.
