Thursday, March 24, 2005

To Teach Us To Love

Reflecting on Terri Schiavo’s Case

I see at least two angles from which to approach Terry Schiavo’s situation. The first is the moral/legal angle: is what is happening to her right or wrong? In my opinion, the answer is pretty straightforward: passive euthanasia is as indefensible as active euthanasia.

The second angle is the personal one: should her situation affect me personally? There’s probably a whole lot we could say here, but what follows gets to the very heart of the matter. My sister wrote these reflections on Terri’s case in her journal yesterday. Her entry affected me so deeply, I asked her if I could republish it here. (For those who are concerned about such things, I changed the names.) Here’s her post…

The Terri Schiavo case seems to drag on and on, pushing into the numb areas of our brains til we no longer want to hear any more about it. Til we no longer care, really. That’s just human nature—it doesn’t affect me personally, and until it does, please just shut up about it. I went to the website that tells her story, and I felt it begin to affect me personally. So I thought I'd tell why.

I used to work in a huge 24-hour care hospice for mentally retarded, physically handicapped, often self-abusive people. I worked in the children’s ward. Each CNA was assigned a group of 4 to 6 children, often separated by gender. I was assigned the boy’s group more often than not because of my age and physical strength. I grew to love those boys in a way that has never left me.

Brandon -- autistic and mentally retarded. He would play for hours with difficult toys, holding them just out of his vision and operating them perfectly. He walked with gigantic, jerky steps. He was tall for 16, and his autism ran him into a mental and emotional cave. I discovered that he would let me hug him from behind, digging my chin into his right shoulder and humming. He would not only let me, he would actually giggle.

Brent -- he was my first grand mal seizure. I cried. I'd never seen a human form reduced to such helplessness. When it was over, he was limp. It was the only time Brent was ever able to be limp. His muscles were normally stretched taut, poisoned by rigidity. He was sweet and precious in his coos and smiles and huge eyes. He was 14.

Marky -- what a challenge. Tiny, soooo tiny. He was 17, but I could carry him as easily as I carry my 4-year-old today. He would slam any area of his body into his large, pointed teeth. He had sores and green infection all over from his self-abuse. He was born with no eyes. He had the highest cognitive ability of any of our residents. He could feed himself, walk unassisted, bathe himself, drink, use the bathroom. He would go into fits of rage and throw himself around his room, damaging his body horribly. I was afraid of him. Then I found out how much he loved his baths. I had to lay entire blankets into the tub, lining the hard sides, before filling it with water, but every single night I'd go through the ritual for him. He'd let me undress him and put him in, and then he'd grope about, trying to find the hard surface he knew was there. He wanted to bash his face into it, repeatedly. I'd gently redirect him, guiding his hand to the surface of the warm water, hoping he'd relax and begin to pat it with his boney hand, like he loved to do. I'd sing to him, and I'd tell him that I loved him. After his bath, I'd cuddle him on his bed, rocking him and singing to him. He'd relax into me and breathe in a humming fashion to himself. His destructive fits began to take on a personal pain for me. His parents, unlike most of the others, lived just down the street. They never visited. Not once in the three years I was there. They sent a card for his birthday one time, and I don't believe what he did to it had anything at all to do with chance. I read him the card and helped him feel the fuzzy animals on it. He held it, sat still, and slowly ejected a large wad of spit onto it. I felt the same way.

Kendall -- my little doll. He was born normal, but he had a drop seizure at age two. He was forever two, at 16 years old. He would grab his pillow and yell, "BED!!!" Or he'd point at a picture and grin madly while hollering, "BALL!!!!" He had to wear a football helmet because of his drop seizures, but you could always see his grin and big brown eyes through the face. Everyone was
"mommy" to him.

There were so many others. But the one that I think of when I think of Terri Schiavo is a girl named Anna. She was most often in my co-worker Becca's group. I would help Becca with Anna because Anna required large blocks velcroed between her legs and arms/body every night. And a diaper, of course. Everyone wore diapers. Anna was one of our tube feeders. The other was Chelsea, a responsive, smiley little girl. Anna was the daughter of a couple who had died in a house fire. She survived, but barely. She did nothing; she was capable of absolutely nothing. I never understood why she was even alive. Chelsea's tube feedings were three times a day, administered by us with the nurse on duty. She knew she was eating and would even lick her lips as we filled the tube in her tummy. Anna's tube feeding was constant, like an IV drip. One night, fully expecting Becca's ready agreement, I said in a cutting tone, "I don't even understand why Anna is alive or even here. She is practically comatose." Becca dropped what she was doing, and her eyes met mine, rather shocked and horrified. "Do you really feel that way, Danna?" "Well, not to be mean, but yeah, she never responds, never moves, is capable of NOTHING, yet she lives on through the tube feeding and all our administrations." Becca set her jaw, and asked me to follow her. When we reached Anna's bedside, Becca motioned for me to be quiet. She leaned down to Anna, looking full in her face. "Hi, Sunshine," she cooed at her. "How are you tonight? Do you know I love you, Sunshine?" Anna's body made a shifty move and she smiled a wide, contorted, toothy smile, her fingers flexing jerkily. I felt stabbed. With guilt . . . with total regret. I was red-faced as I walked out next to Becca, and I thanked her for setting me straight.

Anna became one of my biggest blessings after that. She changed my life. She would be described as "no quality of life" and maybe even "persistive vegetative state" incorrectly like Terri Schiavo. But sometimes it's not for us to decide quality by our own subjective standards. Sometimes it's just our responsibility to love and care for our weaker brothers.

I have two daughters. I suffered from an eating disorder. I relate to Terri Schiavo on a couple levels, and I relate to her parents on a universal level. I don't understand why Terri's husband will not relinquish his control, allowing the people who are the reason he is WITH Terri to have her back as their child, their responsibility. Terri is not on life support. She is tube fed. Just like Chelsea and Anna. She is loved and her life is valued.

Why is our justice system bent on protecting a man who does not have the best interests of all involved at heart? Eating disorders don't come from nowhere; my suspicions are ALL on him. He has made two children with his current girlfriend. None of this adds up to "loving" his wife. Why can't he let her go to the ones who want to spend their lives caring for their daughter? I think I would pull a "John Q" if I were them, if either of my daughters was being tormented by her husband like Terri Schiavo is. She left no will, he puts words into her mouth, and from her history, it would appear it's not the first time.

I believe Terri's life is worth protecting. As much I believe the lives of my own children are. Anna taught me that. And I believe that's why God allows Anna and people like her to live: to teach us to love.


Anonymous said...

Interesting . . . or expected? . . . that God would use my own words to convict me on a whole different playing field! Your replacement name for the girl who represents Terri Schiavo in my mind is not an accident, & praise the Lord for constant chiseling in His perfect timing!

Love you, Josh ~ thank you for the affirmation of exposiing my post to your readers.

Josh said...

Hey, the thanks should all be yours! I'm glad the name changes offered more than simple confidentiality to the people they represent. I love you, too!

Anonymous said...

I think that this is a great way to look at it. I've been thinking about this case a lot, and the legal system in this country (especially in this case) really scares me. That all of the decisions could be up to a man who has so obviously already moved on...
I also think that the point about us not caring about something until it directly affects us is perfectly accurate. We thrive on gossip unless it makes us uncomfortable. We try to ignore the painful aspects of reality. I'm glad you put this up to give more people my age insight into this issue.

Anonymous said...

I agree,
Thank you!!

Anonymous said...

Just leaving a comment to say it would be doju if you wrote another entry...
I'm sure everyone would appreciate that ; )

Btw, Happy Memorial Day!