WHAT’S COOKING: Right to die issue remains a hot topic
Within the past few weeks a lot of us have followed the news of the Florida lady who was starved to death because it was determined that she was brain dead. As I listened to the reports I thought about a couple of people who must rely on feeding tubes to live. One is a lady that I met at Camp Easter Seals. The other is my great niece.
The lady at camp has been attending the facility for as long as I have (since 1974). She has to use a wheelchair. The only way she can communicate is by using Morris Code with using her eyes. She looks up for dots. And from side to side for the dashes. The only movement she has is in one leg, but I understand she uses a computer. She is very popular at camp as there is always someone talking to her. Yes, her brain is damaged, but should her feeding tube be kept away from her? I think not.
I received an e-mail from my niece expressing very well her feelings about the Schiavo situation. It is quite long but true to her character, well said.
Alicia’s “Will To Live”
These last two weeks has been very difficult for me. I have gone from tears to anger to bewilderment and back to tears. Terri Shiavo died, after being starved and dehydrated to death. I can’t believe this has happened. Terri’s crime was that she had a disability. She had no voice, no vote.
This nation is ripe to repeat the horrors of the Holocaust if we do not take a stand against this barbaric and evil, yes that’s right, call it what it is, evil.
Europe was taken by surprise when they befriended Hitler as their savior only to be bludgeoned by his greed. We can no longer sit on the sidelines and shake our heads in disbelief.
“All of us are able for only for a certain amount of time. Eventually we all become disabled.”
While some see this as a right to die or a right to life situation, and it is, I also see it as a person with a disability that could not speak for herself. She did not have a living will. If she had had one she would have died 15 years ago. She would not have been resuscitated and ventilated back then.
We’ve heard a lot about living wills in the past two weeks. Those of you who work in hospitals know that the rule is: If it isn’t written down it didn’t happen. Well, this letter is going to serve as Alicia’s proclamation of – A Will To Live.
Alicia will be 30 years old in September. She was not supposed to live past 10. She has had three surgeries, one for scoliosis. She had a total spine fusion in 1989. She has seizures. She has mental retardation. She has cerebral palsy. She cannot walk or talk. She is legally blind. She can do nothing for herself. She cannot feed herself.
At the age of 21 she was diagnosed as anorectic. Not anorectic in the sense that she had an eating disorder but too thin because we could not get enough food and nourishment into her body by mouth. We decided it was finally time to put in the tube. She went from 54 pounds to almost 90 pounds. She has not been in the hospital since 1998. We have had almost seven years without any serious illness.
In listening to the parade of doctors on the news these last two weeks you do get the sense that these doctors would find no value in Alicia’s life. I can tell you that she is as close to heaven as you can get and still be living in this world. Her sweet, sweet spirit and her beautiful smile, make all of the hardship and “burden” worth it all.
Alicia can hear. She can laugh. She can recognize who is in the room with her by their voice. She has favorite TV shows. She hates commercials. She loves to be in the swimming pool. She really loves it when men speak to her. She touches our lives in ways that only God will be able to explain. She has given us purpose and direction and a dependence on God. But the “experts” would say that her life is not quality living and she should not be allowed to drain the energy of people and continue to be a burden on society through funding for services for her.
We live in a Wal-Mart society. This is not to be disparaging of Wal-Mart but to say that people want life to be like the generous Wal-Mart return/exchange policy. If we get the product home and decide we don’t like the color, the fit, the way it looks, we just take it back and either get our money back or exchange it for a new one. We see this with the marriage and divorce problem in our country today. You don’t like the one you have, just turn him/her in for a new one.
When we have made the decision to go ahead and try to save someone’s life by ventilators, feeding tubes, IVs, antibiotics, therapy, etc., then we also have to live with the results. We should not be allowed to say, well, this is not quite what I expected so now just starve/dehydrate them to death because I don’t like the results.
Please do not misunderstand. I know that sometimes when someone is truly brain dead or is in the last days of a terminal illness families have to make very difficult decisions. Terri Shiavo does not fit either of these descriptions. She had a disability. She was not ill. She was not terminal. And she was not a vegetable, she was a person with a soul.
Preemies are born every day with some pretty significant health difficulties. Some completely recover, some don’t. The parents of the latter group can not then say, oh, this is not what I bargained for so let my child starve to death because now I don’t think I want this responsibility. I work for a disability non-profit group and that is not what we hear from parents. They call us to find out what they can do to make their child’s life as successful and happy as possible.
I have said all of this to say one more thing. Under no cicumstances is Alicia’s feeding tube to be pulled and she be allowed to starve/dehydrate to death. I am her curator/ guardian legally and I have the authority to make that decision. We pray that Alicia will never have to go into institutional care. Her living will and Special Needs Trust are in place to keep that from ever happening.
Alicia is not in pain. She does feel pain but she does not suffer with her disability. Disability is not a disease. We should all be so happy. Her life has value. The “experts” don’t know her. They can argue till they are blue in the face about what is or is not a good life.
When society stops valuing “those that are at our mercy,” as stated by President Bush, then what will be next?
If you don’t think this is such a big deal, just ask one of those who lived through the tyranny of Adolph Hitler or Joseph Stalin. And if you don’t think it could happen to you, or here in our great country, it just did, to a woman with no voice who could not protect herself.
Pray for our nation, pray for our families, pray that God has mercy on all of us.
– Carol Calix