Last Wednesday, my wife's feeding tube was removed. For over 6 years, I have struggled with the Schindlers in court. On Wednesday, I joined them in grief. I understand what the Schindlers are going through at this time. I feel the same loss.
For years after this happened to Terri, I tried desperately to find a cure for her. I went from one doctor to another. Almost all of them told me there was no possibility she would recover. Any doctor that gave me a glimmer of hope that some new treatment or therapy would work was given free reign with Terri. I would do anything to make her well.
I took Terri to California. I stayed with her while doctors performed an experimental procedure to implant electrodes in her brain to stimulate its function. I spent months working with her - hopeful of a cure. Months later, the doctors told me the electrodes were not working.
I took Terri to Mediplex, in Bradenton, Florida, which is a residential rehabilitation facility that specializes in brain injuries. She spent months there in intensive physical, speech, and occupational therapy and testing.
Finally, the doctors and therapist told me and the Schindlers they could do nothing more for her. I hired a private duty aide 8 hours a day to take Terri on outings to parks and museums trying to stimulate her - looking for any sign of life, any flicker of hope. There was none - ever.
Over the years, I had three swallowing tests performed on Terri in the hope that some of the therapies would allow her to be weaned off the feeding tube. The test all showed no change, and I was advised she could not swallow food. Even now, the nursing home staff says that sometimes Terri gags and chokes on the moisture from the swabs they use to moisten her lips.
The reports you heard from nursing home aides that Terri was responsive years ago are not true. I would give anything if they were. Those aides cared for Terri during the time that I was desperately seeking a cure for her. I was so frustrated that I could not help Terri. I am sure that I was sometimes unkind to the aides - even shouted at them. This was not because I wanted Terri dead, but because I desperately wanted her alive. I blamed myself because I could not bring her back.
It seemed to me, during that time, that the aides never did enough for Terri. Some days they did not put her makeup on. I would storm into the nursing home insisting that they do so. I knew Terri always wanted to look her best. Sometimes, the aides did not get her dressed and sitting up until late in the morning. They did not always get her hair combed. They sometimes failed to give her vitamins and medications on time. At each of those failures, I became enraged and lashed out. I felt so helpless. Each small infraction reminded me how powerless I was to really help Terri. I admit that I yelled at the aides and I am now deeply sorry for that behavior. Much like the Schindlers now, I stubbornly resisted and suggestion that Terri was in a persistent vegetative state and would never get better.
I never wanted Terri to die. I still don't. After more than seven years of desperately searching for a cure for Terri, the death of my own mother helped me realize that I was fooling myself. More important, I was hiding behind my hope, and selfishly ignoring Terri's wishes. I wanted my wife to be with me so much that I denied her true condition.
Terri told me on several occasions before this happened that she would not want to live in her current condition. If we had been older, I am sure she would have signed a living will making it clear that she did not to be kept alive on tubes and machines. She never had the chance.
That left me to carry out her wishes. It has been hard. In fact, it is the hardest thing I have ever done. In the end, I did what I believe Terri would have wanted me to do.
Some people do not agree with the decisions the court made to remove Terri's feeding tube. I struggle to accept it myself. But I know in my heart that it is right, and it is what Terri wants. There is no longer any realistic hope of Terri's recovery. Perhaps there never was, but I had to try - just as the Schindlers have tried. The reality is that Terri left us 13 years ago, and none of us can bring her back.
Terri's parents and family may visit with her as much as they choose in the days to come. I, and my friends and relatives, will be there as well to spend time with Terri, as we all grieve. Please pray for us all.
Of which only the first three years (at most) were spent on therapy. He's spending 4 more years looking for a cure and just letting her lay there in the meantime? Fiiiiiiiiiishy.
"Matters Of Life And Death -
Terri Wants To Live
Family Reveals Secret Therapy Sessions Held For
Brain-Disabled Woman Scheduled To Die
By Sarah Foster
© 2003 WorldNetDaily.com
10-15-3
Terri Schindler-Schiavo does not want to die. She would like to go home. And she tried to convey this to her father in no uncertain terms by sitting bolt upright and trying to get out of her chair when told she might be killed, her family has revealed.
The stunning news was released at noon Eastern today by Terri's father, Robert Schindler, at the 'round-the-clock vigil outside the Woodside Hospice facility in Pinellas Park, Fla., where his daughter's court-ordered death by starvation is scheduled to begin tomorrow at 2 p.m. Eastern. At that time, her husband and legal guardian Michael Schiavo is scheduled to give the order to disconnect the 39-year-old brain-disabled woman's feeding tube that has provided her with sustenance for the past 13 years.
In an interview a few hours earlier, Schindler described the incident to WorldNetDaily. He said he was holding a cell phone to Terri's ear as she listened intently to the speaker, propped in her jerry-chair at about a 30-degree angle. Suddenly she sat up straight and tried to get out of her chair, despite her weak legs and muscles that were slack from lack of exercise.
His daughter's response stunned Schindler, who grabbed the phone and asked, "My God, what did you tell her?"
The speaker said he had warned, "If you don't get up and get out of there, you're going to die there."
"He was ecstatic when I told him what Terri had tried to do," Schindler said.
And so was Schindler. It was part of a covert rehabilitation program the desperate father and Galaxy Wave Group - a therapeutic company on the cutting-edge of medical technology - devised for Terri in a bold attempt to bring her to a point of recovery where even Florida judges would realize they could not allow her to be starved.
Beginning in late November last year and continuing until the end of February, Terri received daily, hour-long therapy sessions by telephone with company president Dr. Joe Champion or one of his therapists.
While Schindler held the phone to his daughter's ear, they would talk with her, giving her instructions and tasks: move your left arm, move your hand, and so on.
"We started right around Thanksgiving," Schindler recalled. "The first day Dr. Champion listened to the sounds she was making and said he felt it wouldn't be long before she was talking. That was the objective."
The therapy sessions lasted through February, but were interrupted by bouts of flu and other illnesses. One particularly severe illness caused her to relapse.
The "tough love" of telling Terri what lies in store for her was tried several times to stimulate her to work hard.
In a signed affidavit read at the press conference Champion described one of the sessions.
"In December of 2002, I confronted Ms. Schindler with the 'truth' and told her that unless she helped me in returning her from the comatose state that she was in that she was going to die a horrid death," he wrote. "I explained in detail that they would remove the single tube that was providing her nutrition and she would slowly die of starvation. At this point, it was reported by her father that she sat up in bed and became teary eyed."
That Terri understands her own mortality and reacts so strongly when threatened runs counter to the official notion that she is oblivious to her surroundings and will not even know she is being dehydrated and starved to death.
Shiavo's attorney, George Felos, a well-known "right-to-die" advocate, said the claims of improvement that the Schindlers have been making in the last few weeks are impossible.
"There is no cognition, no consciousness," he told the Tampa Tribune.
He further explained why no effort was made to spoon-feed her.
"She simply does not have the ability to take food or water by mouth," he said. "If they tried that, she would aspirate it and suffer an infection that would likely prove fatal."
To corroborate Schindler's account and for further details, WorldNetDaily contacted the person who worked with Terri via telephone. He agreed to be interviewed, but requested his name not be used.
According to "Mr. Smith," Terri was able to move her hand, her arm, her leg on command. She couldn't speak, but she followed instructions.
"The bottom line is she is not vegetative, the way the husband and the side the court has gone with want to portray her," Smith said. "She definitely has some brain damage and severe problems, but she is not a vegetable."
"The problem for Terri is that she can do things, but not on a consistent basis. One day she couldn't, another day she couldn't or wouldn't," he explained. "I can't tell you the reasons, but Terri has her good days and bad days. On a good day she can respond appropriately with no problems. She understands."
Some days are extremely good - like the day she tried to get out of her chair.
"The way Bob [Schindler] described it to you is exactly correct," Smith said. "She just about got out of that chair."
As he tells it: "I was telling her she has to work with us. I couldn't tell you my exact words now; it's been a year. But I was explaining to her that she needed to work with me, that if we could get her to the point to where she could prove to people that she understood, she could get out of there and go home with her parents. I was explaining to her that she had to work with us and respond or they were going to let her die. That's when she tried to get out of the chair."
Smith said they stopped the sessions when he had to leave the area for a couple of months and were not resumed on his return.
It is clear to Schindler that the therapy was working, but until now he has not wanted to talk about it. He could not even bring it up in court as evidence, because it possibly violated a court order.
The Schindlers had reason to suspect that their efforts to help Terri would not be appreciated and that Schiavo might even obtain a court order banning them from her room, as he had done in the past. At one point, he banned Terri's brother and sister from her room for five months simply because they asked the nurse to try and give her some pudding. But there were other instances.
At the initial trial in January 2000, the Schindlers' attorney at the time, Pamela Campbell, introduced into evidence a video of Terri made by a friend of her sister, Suzanne Schindler. It was shown on television news, and three doctors who saw it contacted Robert Schindler saying that they did not believe his daughter was in a persistent vegetative state, but that they wanted to examine her to be sure.
Schindler said he took each of them into her room, and they tested her reactions to stimuli. They found she was definitely not in a persistent vegetative state, that she was cognizant and could recognize her family, because when she saw members of her family she would smile and showed signs of recognition.
All three said they believed Terri had the ability to swallow because she was not drooling. The affidavits were sent to probate Judge George Greer requesting him to allow a swallowing test, which he summarily denied.
Greer accepted the affidavits but did not change his mind.
Schiavo was furious that a video had been made of Terri and doctors had been taken to visit her. In response to his demands, Greer issued an order banning further videotaping and any still photography, and a list of "approved" visitors was drawn up. The list was relatively long over 40 names but there was a catch. Visitors could only see Terri if accompanied by a family member. This meant even Terri's priest, Monsignor Thaddeus Malanowski, did not have normal access to her.
Schiavo and attorney Felos decided that greater controls were needed. In April 2000, they moved Terri surreptitiously from the nursing home that had been her home for six years to the Hospice of the Florida Sun Coast, a place intended for people in the last stages of an illness.
Regulations generally prohibit a hospice from taking a patient who is not terminally ill and expected to live longer than six months to a year. But Felos was chairman of the board of directors of the hospice and was able to arrange for her admission. He resigned his position shortly thereafter.
A year later, in April 2001, her death by dehydration was ordered to begin, and the day her feeding was stopped her brother and sister came by with a spoon and a cup of pudding, asking a nurse to try to feed her by mouth. The nurse refused and reported the request to others. When Schiavo found out he demanded that Bobby and Suzanne be removed from the list of approved visitors, and Greer rubberstamped his request.
"We were trying to play by the rules," Bobby told WorldNetDaily. "But that didn't matter. We were kicked off the list anyway."
Terri was 60 hours without food or water before a different judge issued an emergency stay because new evidence had come to light, and her feeding was resumed.
The evidence was strong enough for a stay, but not strong enough to end Schiavo's efforts. A series of appeals followed, and in November 2001, the 2nd District Court of Appeals ordered an evidentiary hearing held in the fall of 2002.
Five months following their banishment from the Hospice, Bobby and Suzanne Schindler had their visiting rights restored, but only on condition that they not attempt any spoon-feeding.
"I don't want anyone trying to feed that girl," Greer thundered.
Greer did not specifically place audio-taping and therapy-by- telephone on the list of banned activities, but experience had taught the Schindler family that it was best to keep such efforts to themselves rather than run the risk of angering Schiavo and having their visiting rights suspended.
As WorldNetDaily reported, the Schindlers have been fighting with their son-in-law for 10 years over the lack of care and therapy Schiavo provided for their daughter, who suffered massive brain damage when she collapsed at her home 13 years ago under mysterious circumstances at the age of 26.
The contentious family dispute escalated into a major euthanasia battle in May 1998, when Schiavo petitioned the Florida courts for permission to end his wife's life by disconnecting her feeding tube, insisting she is in a "persistent vegetative state" and that in casual conversations she had told him she would not want to be kept alive "artificially." Although Terri breathes on her on and maintains her own blood pressure, she requires a simple tube into her abdomen to her stomach for nourishment and hydration.
Although Terri's parents and siblings have claimed for years that she recognizes them and tries to talk, and over a dozen prominent doctors and therapists have stated under oath that she is not in a persistent vegetative state and with therapy could be rehabilitated, a handful of doctors have testified she is "vegetative." They claim her expressions and vocalizations are simply reflex actions and she will never regain consciousness. Despite a scarcity of expert testimony and evidence for Schiavo's position, the Florida courts have consistently sided with him and Felos.
When the seven-member Florida Supreme Court in August turned down an petition by the Schindlers to review the case, the way was clear for Schiavo to order his wife starved to death.
On Sept. 17, Greer, of the Pinellas-Pasco Circuit Court, scheduled Oct. 15 as the day Terri's feeding tube would be removed.
Operation Rescue founder Randall Terry is coordinating the vigil. He advises anyone who wants to help Terri to telephone Gov. Jeb Bush and urge him to instruct the Department of Children and Families, which enforces standards of hospice care, to do their own investigation to see if she has been getting proper care and rehabilitation.
"Which we know she has not and will not if they take her tube away," said Terry. "And when they find she has not, then Bush can order them to assume guardianship. They must take the guardianship away from the husband."