LIFE NOT WORTH LIVING:

My problem, ultimately, is this: I've lived so close to death for so long that I know how thin and porous the border between coercion and free choice is, how easy it is for someone to inadvertently influence you to feel devalued and hopeless -- to pressure you ever so slightly but decidedly into being "reasonable," to unburdening others, to "letting go."

Perhaps, as advocates contend, you can't understand why anyone would push for assisted-suicide legislation until you've seen a loved one suffer. But you also can't truly conceive of the many subtle forces -- invariably well meaning, kindhearted, even gentle, yet as persuasive as a tsunami -- that emerge when your physical autonomy is hopelessly compromised.

I was born with a congenital neuromuscular weakness called spinal muscular atrophy. I've never walked or stood or had much use of my hands. Roughly half the babies who exhibit symptoms as I did don't live past age 2. Not only did I survive, but the progression of my disease slowed dramatically when I was about 6 years old, astounding doctors. Today, at nearly 50, I'm a husband, father, journalist and author.

Yet I'm more fragile now than I was in infancy. No longer able to hold a pencil, I'm writing this with a voice-controlled computer. Every swallow of food, sometimes every breath, can become a battle. And a few years ago, when a surgical blunder put me into a coma from septic shock, the doctors seriously questioned whether it was worth trying to extend my life. My existence seemed pretty tenuous anyway, they figured. They didn't know about my family, my career, my aspirations.

Fortunately, they asked my wife, who knows exactly how I feel. She convinced them to proceed "full code," as she's learned to say, to keep me alive using any and all means necessary.

From this I learned how easy it is to be perceived as someone whose quality of life is untenable, even or perhaps especially by doctors. 

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