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my view from the prison of a SICLE (Self-Imposed Child Loss Experience) due to debilitating maternal disease
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:: Monday, March 14, 2005 ::

A couple things...

Item 1:
Jim and Naaman were talking about this post over at Premature Terminal Delivery and Naaman the Ex-Leper.

I too felt a little conflicted when I read it. On the one hand, the little girl needs lots of help, I would like to see her get that help, and I don't have a problem with restitution from the entities that victimized her leaving her permanently disabled. On the other hand, the key word is "entitIES". It's pluralized, because, like me, Julie's mother personally and purposefully delivered her child into the hands of death.

The plantiff is listed as a "guardian de son tort of the property of Little Julie", so I'm not so sure her mother is the one who initiated the case. At any rate, Julie's mother and the abortionist owe that child financial assistance for the rest of her life, and there's no court ruling in the world that will ever convince me otherwise. They caused Julie's physical challenges, and they should do everything within their power to make her as comfortable as possible.

I think I would be more worried about this case (and the affect it had on abortionists and children who survive abortion) if I really believed that most abortionists seek medical attention for the children who survive. Instead, I believe that most abortionists merely drown or expose the children to death. I've heard former clinic workers talk of how they treat little survivors. One spoke of the muffled wails of children coming from the freezer. Lovely. So I'm not sure cases like Julie's are going to cause a rash of infant deaths at abortion facilities everywhere. Abortionists already have that covered.

We've gotten ourselves into a bit of a fix with all of this unethic, wouldn't you say? And those who suffer the most are the vulnerable innocent. It's enough to make you want to take a nice Nestea Plunge into the Grand Canyon.

Thanks, guys, for good dialogue on the post.

Item 2:
I spent the day at the capitol attending the House Judiciary Committee's hearing on HB701, a law that would, if enacted, require an advance directive signed by an individual before life support could be withdrawn. It has the potential of helping countless disabled Americans, including Terri Schiavo. IMHO, HB701 is just common sense.

There is a possibility that Mike Schiavo loves Terri dearly and that his motivation to starve her to death stems from the tender consideration of a long-ago verbal advance directive from Terri. There is also a possibility that Mike Schiavo put Terri in the situation that she is in today and does not want her to regain the ability to communicate that to anyone.

My point is, if there is even the remote possibility that a proxy's motivations are sinister, then we should err on the side of caution. And this whole "I wouldn't want to be in Terri's position, therefore she couldn't possibly want to live" simply won't do.

I'll be candid here and admit that when I was ailing in my pregnancy with Elise, and I was in tremendous physical discomfort, I told my husband that I would not want to be kept alive if I had to live the rest of my life that way. He disagreed, and so I filled out an advanced directive so as not to be thwarted if it came to that. My husband then asked me if I could make a decision now, in a position I'm not in, for a position I might be in much later. Would I be the same person with the same desires? Would it be the same type of illness, i.e., would I be in constant pain or would I be disabled with pain I could manage? Would there be a chance for recovery? How would the children feel if I didn't give myself a fighting chance? There was so much to think about, and I'll be honest, I haven't had my advance directive placed in my official medical file. It's something I'm still mulling over. It's something I need to get around to while I still have the opportunity.

To make a long story short, there were a ton of people who testified, and the bill ultimately passed the House. Now it goes somewhere else to be considered and voted on again, and then I think it goes through one other hoop. Would love to see this help Terri before her tube is yanked on Friday.

To make a short story long, one of the women who testified was partially paralyzed and had been in a "persistent vegetative state" like Terri, only she couldn't even open her eyes. She said she was aware of everything and heard the doctors telling her family that it would be better for all involved if she were "allowed to die". Her parents, though they love her, agreed with the doctors and were set firmly against her husband who would not give up on his wife, the mother of their two children (the youngest being 18 months at the time). The physicians, feeling that she was not aware, evidently had issues with anesthesia, or even inserted the gastrostomy without it, because she described feeling every moment of the procedure and the excruciating pain of it. She was aware but trapped insider her body, as she described it. Her husband demanded all available therapies, and she is here today. She is beautiful, vibrant and alive.

Another woman got up and spoke with disdain about the "artificial feedings" that her geriatric patients would have to endure if this bill passes into law. She described one 91-year-old stroke victim as being in a persistent vegetative state and yet this law would require that the patient would have to endure a feeding tube, which she claimed would cause a barrage of other problems such as bed sores and infections. In addition, she described the feeding solutions as "clear" and "white" and "disgusting". Being that I've been on feeding solution via a tube, some clear and some white, I can honestly say there was nothing "disgusting" about it. Well, ok, the white stuff kinda grossed me out a little but only because it looked like milk, and I was a hyperpuker; anything that remotely reminded me of food was puke-inducing. Milk does not disgust me now, and other than looking like milk, my formula was not disgusting. And acutally, it's a beautiful thing to anyone who needs it to live.

Everyone was using the term: "artificial feedings". This really bothered me. Tube feedings aren't "artificial". They're very real and they keep a patient really alive. I have never heard a physician refer to them as "artificial feedings", nor have I seen that term in medical literature. Instead, the feedings are referred to as "alternative nutrition" or "par/enteral feedings". I have also seen "supplemental nutrition" or "supplemental feedings", but never "artificial feedings". I felt like the use of the term was a result of a concerted effort to portray the errant idea that extraordinary measures are being taken to keep Terri alive. But a gastrostomy is not a heart/lung machine. It's an alternative method of feeding, and lots of people live this way. So what if it uses formula? Babies can only metabolize formula. Does this make them inhuman? (Don't ask Peter Singer.)

Anyway, the whole point is moot with Terri. The woman has been swallowing her own spit for ages. If she is swallowing her own spit she ought to be afforded the opportunity to try and swallow food, but Mike has not allowed this and Judge Greer just ruled that no one has to.

Everyone had their arguments. I just offered a line of questions that went something like this:

"I love my husband very much and don't suspect that he is having an affair... but what if he was? And what if something like this happened to me? What if my death were convenient and my husband told physicians that I had said I wanted to die even if I really didn't? What if he lied? How would the state of Florida protect me in that situation?"

I also got into an argument with a reporter for CBS. He did this nasty little intro 3 times, and with each take it got more and more punative. Eyes would roll here and "for cryin' out loud" was added there, all to paint a picture of one disgusted liberal reporter. It went a little like this:

reporter: (shaking head) "I'll bet a lot of you are doing the same thing I'm doing right now. Picture this: You're at the breakfast table with your family and you tell them, 'Hey, if what happened to Terri ever happens to me then pull the plug for cryin' out loud!' Well, if this law passes, that conversation won't mean a thing."

When he was done with the third take, he asked my 6-year-old how he did. My kid smiled big and said, "Great!" This cheesed me off; leave my kid out of it. I asked the reporter, off camera, "So, are you going to run right out and get your advance directive in writing?" He said he was. I said, "Good. I think everyone should have to do this so that their fate will be up to them and no one else." With a sly look the reporter nearly winked as he said, "Yeah, but c'mon! Only 10% of the population is as smart as you and I; Most people don't even know about advanced directives." I ignored the offensive statement, refrained from asking him to cite his numbers, and asked him, "What about women in bad marriages? What about the guy who doesn't like his disabled wife and wants her to die even though she would prefer not to?"

His educated answer? Drum roll, please...

"Well, they shouldda got a divorce then!"

My mouth hung open. (You heard it right here, folks. If you're having marriage trouble just run right out and get a divorce. Don't hang in there and try to make it work or you're just asking to be starved to death if some ill befalls you.)

I said, "There are a lot of people in bad situations out there; relying on them to get a divorce isn't the answer. We've got to come up with laws that protect everyone, not just a few."

If education is a problem, the answer is not to jeopardize the safety of the ignorant, but to educate all. For example, one of the possibilities suggested was distribute the information/form along with drivers licenses. The DMV is already asking us to be organ donors. They even put our organ donor status on our licenses. This is not an impossibility.

HB701 protects everyone who writes their wishes out on a slip of paper. When we can't rely on everyone to be truthful and compassionately motivated, the written, advance directive is the only thing that makes sense.

:: ashli 8:30 PM # ::

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