Sunday, November 06, 2005

1 degree of freedom

Last June I mentioned the stark contrast between how the Terry Schiavo case and the case of a dying boy in Texas were handled by our government. As it happens, these cases have a common thread. Our beloved President Bush passed a law as governor of Texas, allowing doctors, NOT the family, to make the little boy's 'right to life' decision for him, over the objections of his parents. And yet in the Schiavo case, President Bush apparently had a change of heart, and sided with her parents. He ended his vacation early for the first time ever to sign a law tailored entirely for them.

And what about all the people protesting in the streets? I'm all for defending life, but I'm also for defending quality of life. I'd like to see those people spend a single day as Terry lived, or as a person suffering the late stages of ALS, or any other terminal illness for that matter. I have a feeling they might come to realize the gravity, the graying of right and wrong, in such a situation. Some of those protesters have gone so far as to suggest laws should be passed to prevent anyone from being taken off of 'life supporting treatments' such as ventilators, feeding tubes, heart machines, and the like. So easy to judge the actions of others when you are not in their shoes. Do we really want laws to make these decisions for us?

I've often wondered why suicide, regardless of a person's situation, is illegal in this country. I suppose there is the 'impact to society' perspective, in the sense of someone endangering others in the process, or the unpleasant details and cost of cleanup. And I certainly agree that we should do everything we can to support and encourage people to choose life. Depression is quite often the trigger and can usually be treated. But for all that we like to tout 'freedom' as the ultimate cause worth dying for in this country, including the defense of another country's freedom, I fail to understand why a person cannot willingly choose to die, provided they do so in a matter which does not incur harm or cost to others. A person can choose to enlist in the military, knowing they may very well die in battle, but someone suffering enormously cannot choose to end their pain?

When ALS has destroyed my ability to move, to eat, to speak, and even to breath, leaving my mind intact and fully aware of my situation, of every ache and pain, my only remaining freedom will be to choose between life and death. Life with a ventilator and feeding tube. Or death by suffocation. I intend to choose life. Many do not. They simply do not want to live that way. And why should you or I have any right to intervene?

In the end the Schiavo case played out as our laws intended it to, with the rights and respected wishes of the individual (for which there was much evidence by the way), in fact the only real notion of freedom still available to her, still intact. Of course God or Mother Nature, or whoever pulls the strings in this joint, has the ultimate say in these matters. The obvious practical lesson from all of this is: make out a living will immediately, if not sooner. Oh, and be sure you're marrying the right person. Your spouse takes legal precedent over your entire family as soon as you say 'I do'.

Some people may think I'm being harsh, but I think I've earned the right. This debate is no longer a hypothetical one for me. It's reality. It has a terrible and tangible weight. I mean no disrespect to anyone dealing with these issues. Quite the opposite. I have a renewed and profound respect for the difficult and often paradoxical choices the afflicted and their families have to face. I say all these things in their defense.

One of my best friends was in Terry's situation after a car accident. Permanent vegatative state (which I observed in person by the way, not via videotape like Senator Frist). His family made the difficult decision to have his feeding tube removed, believing as I did that he would want it that way. No media circus. No congress. No president. Just his family and friends, grappling with the hard choices life forces us to make, and grieving in private with those who truly knew and cared for him.

1 comment:

Anonymous said...

Scott,
Thank you for writing about Andy. You were a good companion to him and still are a loyal friend. Alex and I celebrated his life on Monday by taking in some good music. We miss him so much.