Friday, June 03, 2005

Quality of Life

I hear that term bandied about an awful lot in the past ten to fifteen years, as people try to convince others that some individuals just don't have any ...They also speak of how 'they would not want to live like.... that'.

What did it mean when we spoke of 'quality of life' when I went to nursing school?

"Death with dignity" is another term that I have heard distorted into something it never meant long ago. Perverted term now meaning that a certain person has no real reason to be alive, and the 'most merciful thing' is to 'help them die' ... with 'dignity'... kill them, assist them in suicide, euthanize them, starve and dehydrate them to death.

When I was in nursing school, 'quality of life' was a positive, meaning that when someone could not do things, like bathe themselves, get out of bed, feed themselves, etc, WE did it for them, allowing them the dignity to do whatever they COULD do, and then picking up the slack in order to give them a BETTER quality of life. If all you could do as a quadriplegic was to reach up and scratch your nose... we let you reach up and scratch it no matter how much easier it may be for us to just do it for you. But if you could not get that spoon to your mouth, we got it there for you, treating you the way WE would want to be treated.

The Golden Rule.

Death with dignity meant that we cared for you, held your hands, turned you, bathed you, dressed you, fed you, changed you, spoke to you, listened to you, and did this as your ability to do it lessened. As you could do less, we did more. You may want to speak about Faith, or not. You may want to plan your funeral or not. You may want to say or write things to loved ones, and you were given the opportunity to do this. We kept you comfortable with medication as needed, but we did NOT use 'Terminal Sedation' designed to ... uhm, 'keep you comfortable'... while depressing your respirations with morphine given much more often than you may need it... actually probably speeding your death.

As your body needed less food and fluids (as the dying process continues, eventually, your body can no longer assimilate food and fluids... ) we continued to offer it to you, even if you only wanted a sip or a bite. When no longer able to take even that much, we still offered liquids via syringe or moist swabs.

Today, OTHERS judge some persons' lives as having little or no quality ... and OTHERS speak of allowing people to 'choose to die with dignity'... which means... choose suicide or kill them. OR, never allow them to live to begin with, by aborting 'defective fetuses'. Either way, they are being judged as being not worthy of life by someone else. They are being judged to be non-productive, having no real 'quality of life'.

Thalidimide was a drug used to aid nausea in early pregnancy that was found to cause serious abnormalities in the babies. They were born missing limbs, or with malformed arms, legs, etc. I remember the Romper Room lady's picture in the paper after she went to Sweden for an abortion, on a stretcher, at the entrance/exit of a plane, because she had used that medication. Sherry Finkbine decided that her baby was not worthy of life. This was her fifth pregnancy, and she was unable to obtain an abortion here in the US. Many today praise her actions and hold her up as an example of a woman's right to choose...

Consider her example and that of some others for a moment... A Spanish speaking woman gives birth to a baby boy and is not allowed to see/hold her son by her physician/uncle for very long. Repeatedly, she sees him for short times, totally wrapped. Eventually she insists, and sees her baby with no arms, and a deformed foot. She cries, hard. Her own mother comes to her and challenges her to accept God's gift a 'Gift of Hope'. This family chooses to help this child have a better quality of life, by helping him learn independence, and treating him as though he can do anything he wants to do. They TEACH him to do things, and let him learn.

He learns to sing at his father's side on the couch, and eventually tries to learn to play guitar with his feet. He struggles, and his siblings mention that maybe this is something he should not attempt. But HE continues regardless of the 'noise' that comes from that guitar. Many years later, he has the privilege of singing for the Holy Father for World Youth Day in California...and the Pope jumps down off the stage to go to give him a kiss on the cheek, telling him to continue to gift others with his singing/playing the guitar. He does. He drives a car, travels the world, is married, and has adopted children, including carrying them on his back. This video is in Spanish, with some (the important parts) in English, and takes awhile to download, ... but...

Witness Tony Melendez. Witness 'Quality of Life'. Witness human dignity. Witness a life WORTHY of living. And do not ever judge anyone else as being less than worthy, regardless of their disability, for many 'normal' people are much more handicapped than the most disabled that I have met.

Handicapped is NOT the same as disabled. Disabled is something you learn to live with, and get on with life in spite of, no matter how bad. Handicapped is letting life pass you by because you choose not to live it to the best of your ability. And you don't have to be without arms, without cognitive ability, without sight or hearing, without use of your body to be handicapped!

Witness a young teen girl just out of High School in 1967 who dives in and hits the bottom, breaking her neck, and becoming paralyzed from the neck/shoulder area down. As she struggles to live, she wants to give up, but is challenged by others. This girl learns to paint beautiful pictures with her TEETH! Gorgeous pictures. And she has better "handwriting" than many able-bodied. She uses her brain to write, her voice to sing, drives a special van, and travels. She had found ways to get wheelchairs for those who cannot get them, through Wheels for the World....
She is my age, and has accomplished much more in her life than most, including getting married. Joni Eareckson Tada is living a life worthy of dignity and ... has a wonderful quality to that life.

Consider Zach, a young man now, a boy when I met him. Adopted into a family with several other special needs children, Zach can do nothing but smile and coo, and ... say HHHHHAAAAAAA for 'Hi'. A wonderful smile, he requires nursing. He had a sister Destiny, who could win your heart in seconds, but who was trached and could play with some toys, roll around on the floor, and not much else. Destiny died at age five, and is still missed. He has a sister who is beautiful, but severely brain damaged as a result of her father's physical abuse when she was a baby. She also can smile, and does need much physical care. The others are more capable than this, but also special needs. Consider the quality of life here as their parents and nurses take these children in a large camper all over the US for vacations, including their suction machines, nebulizers and .... in some cases, tube feedings. Oh, did I mention that in addition to their adopted children, they have two adult biological children, and take in foster kids, some as disabled as their own, some 'normal' but with emotional problems? Witness acceptance, tolerance, devotion. Witness quality of life!

Witness a young girl, wild. Prone to temper tantrums. Witness a family unable to help her, but who found her a teacher. Witness a woman who broke through the cloud around this young girl who LOOKED to all the world like she had little to live for. Witness Helen Keller and Annie Sullivan..... and see that even though disabled, both women were NOT handicapped! Both women became college graduates at a time many women did not go to college.... witness quality of life....

Each child, each adult is a Child of God who is alone the Author and Giver of Life, and who is the ONLY one with the authority to call those lives Home to Him when it is His time, not ours. We have no right to take that life from ANY of His Creation until HE calls them home, by injetion, by oral med, suppository, or... by dehydration/starvation as we have done to Nancy Cruzan, Terri Schiavo and others.

When God Himself calls them Home finally, they deserve to be treated with the dignity due any human being, with kindness, and ..... to live until He says "Come, follow Me... enter into my Kingdom"....and in the final analysis, most/many of those who are disabled may beat those of us who are normal (not by their death, but by their innocence) into that very Kingdom due to our sinful behavior.

God bless.

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