February 24, 2005

Some personal writings about the Terri Schiavo case

Topics: General

I've found a couple more posts from bloggers who have/had disabled children, where they compare their own situations with Terri Schiavo's. Nothing speaks to this case better than the personal accounts of those who have been there.

Tom McMahon asks "When will they be coming for Ryan?" (Read it all.)

In February 1991 our son Ryan suffered a severe brain injury. He was in the hospital for 6 months, and has never regained the ability to walk or talk. He cannot answer Yes or No by any means. He is totally dependent on our care. When he came home from the hospital, he had a feeding tube to his stomach just like Terri Schiavo does now. Through a lot of repetition he learned how to eat and drink again at home, and since we didn't need the feeding tube we removed it and the hole in his stomach healed quite well, quite naturally. He likes to be around people, and he watches a lot of TV.
(H/T to La Shawn Barber)

SunnyeWriter also feels personally close to the family because of her own son, may he rest in peace:

We read to him and talked to him, sang to him, prayed with him. We treated him as though he would someday be well -- and we believed he would. I still believe he would have gotten well if God hadn't decided to take him (or, medically, if his organs hadn't quit.)

Medpundit wrote back in November of a man who was faced with a Schiavo-like situation:
I felt that even if I wanted to end this and her parents disagreed, how could I deny them the chance or hope of holding on to their daughter even if I've given up on my wife?

After 20 months of stays in various hospitals and nursing homes, I was finally able to bring my wife home. Five years later, she is still at home with me. She is totally dependent on me, the families or the nursing staff for all of her needs. I'm now her legal guardian, and we have new wills in place.

Another old post from Medpundit that isn't a personal account, but it is fascinating (again, read it all):

Here it’s worth noting that some of the doctors who treated Terri Schaivo and the nurses who cared for her, testified that she was responsive. But, what difference does it make, you might ask. She’s still living a lousy life, confined to a bed, unable to communicate with anyone.

The difference it makes is that we don’t know what’s going on inside her head. Even if she can't blink her eyelid, it doesn't mean she isn't having thoughts or feelings. Medical science can’t tell the difference between her inner thoughts and those of, say, Jean-Dominique Bauby, the French writer who wrote a book despite being, for all intents and purposes, the same as Terri Schiavo. The only difference, as far as anyone, the greatest neurologists included, can tell is that he could move an eyelid.

An ordinary day. At seven the chapel bells begin again to punctuate the passage of time, quarter hour by quarter hour. After their night's respite, my congested bronchial tubes once more begin their noisy rattle. My hands, lying curled on the yellow sheets, are hurting, although I can't tell if they are burning hot or ice cold. To fight off stiffness, I instinctively stretch, my arms and legs moving only a fraction of an inch. It is often enough to bring relief to a painful limb.

My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set out for Tierra del Fuego or for King Midas's court. You can visit the woman you love, slide down beside her and stroke her still-sleeping face. You can build castles in Spain, steal the Golden Fleece, discover Atlantis, realize your childhood dreams and adult ambitions.

... when blessed silence returns, I can listen to the butterflies that flutter inside my head. To hear them, one must be calm and pay close attention, for their wingbeats are barely audible. Loud breathing is enough to drown them out. This is astonishing: my hearing does not improve, yet I hear them better and better. I must have the ear of a butterfly. -excerpted from The Diving Bell and The Butterfly.

From Not Dead Yet (a disability advocacy group), an article from Day 5 of the last attempt to take Terri's life:

I think it is because Dr. Greer, a Vincent Price look-alike who testified today, came across as so threatening to people with disabilities. He was on the husband's side to boost the argument that Terri is too disabled to live...too disabled to appreciate sustenance, fluid, family, touch or hugs like I was doing today from my wheelchair with all my existing physical deficits.

There were some amazing factual gaps in his knowledge.

For example, he considered the message boards used regularly to assist people who can not speak well as something very rare. Innumerable places where people with cerebral palsy are helped every week refute that. The number of intensive care units who use them with people on ventilators do the same.

He claimed to have never heard of the most famous computerized message board user of all -- Stephen Hawking. I'm sure the message board I used at the onset of my disability would have puzzled him. It was incredibly effective in letting me speak my mind and was made of an old file folder and a used black magic marker. That this might have cost all of fifty cents would have definitely been beyond the realm of possibility in his medical opinion.

The additional possibility that a similar message board could help Terri Schiavo communicate is being totally discounted by this doctor and the others arguing for the discontinuation of her feedings.

The lawyer who has brought these doctors together has said a real litmus test is whether she can put a spoon to her mouth.

That would sure knock physicist Hawking out of the box marked living. Holding a spoon without assistance vs. holding Newton's chair as Lucasian Professor of Mathematics at Cambridge University....

Read all of their accounts. I also strongly urge you to browse through Not Dead Yet and other disability advocacy groups; the fight for Terri is NOT just a "right-wing fanatic" or religious crusade, as many have characterized it.

This is about a fundamental right to human life, and that includes all kinds of people, not just the able-bodied and self-sufficient. When did eugenics--purifying the race--become acceptable to us? This isn't ONLY about Terri Schiavo, although she is the most pressing and urgent case at the moment. It's also about the larger issue of our basic respect for human life, in all its forms.

UPDATE: OK, my mistake--I see now that Tom McMahon's story was already posted here earlier. Sorry!

If you have or know of any other personal accounts of cases similar to Terri's that you'd like to share, please leave a comment or contact me (Beth) and I'll either post a link to it here at BlogsForTerri or at my blog (or both).

[Originally posted at MVRWC]

Posted by beth at February 24, 2005 1:27 AM

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Tracked on February 24, 2005 3:26 AM


Clearwater, Florida my own hometown in the last 15 years has seen an apparition of the Virgin Mary appear on a prominent bank building and the public horror of the Terri Schiavo case. I suggest that these two phenomena are related. The profile of the Virgin on the bank bldg is identically proportional to the image of Our Lady of Guadalupe. Our Lady of Guadalupe came to save the Indians from massive human carnage and was successful. Hopefully she will be successful here as well. Because once Terri dies the legal precedent has been set for so called "euthanization of the weak" and only God Himself knows where it will all lead.

Posted by: Paula Hall at February 24, 2005 10:36 AM

My father, initially "two shades above a coma" according to doctors after his heart attack two years ago, has made strides BECAUSE OF THERAPY. We were told, in a Catholic hospital, that we should remove his feeding and hydration tubes since all care was "futile," and he would be a complete vegetable. He was not on a respirator and was not brain-dead!
Thank God we didn't listen. It took months for him to slowly regain awareness and responsiveness. He does still need a feeding tube, but through the hard work of speech therapists was able to relearn how to swallow. He has even walked in the PT setting. He knows us and his friends, can read and can even sign his name. We have had to fight skeptical neurologists and the insurance company to provide the therapies. We keep pushing so that he can come home from the nursing facility permanently, rather than for more than a few hours. It won't be easy, but you work toward the best possible outcome when you love someone.
Perhaps Terri could still benefit from speech and physical therapy, just as my 63-three-year-old father has. Why not give her the chance? What is there to loose by providing her with these services? How could her husband deny her access to therapy? Is he really working toward the best possible outcome for Terri? I think--no, I KNOW from my family's experice, he is not.

Posted by: Ellen at February 24, 2005 2:08 PM