Terri and Mom - Fall, 2002

Terri in 1992, after her injury

Our family at Terri and Michael's wedding

Terri Schiavo's brother tells his story

In a sense it was pretty simple but at the same time because of all the legal wrangling it became very complex. It wasn’t a very difficult decision or situation as far as our family was concerned.
In 1990 Terri was 26 years old and physically healthy when she suffered an unexplained collapse. I was with Terri just hours prior and she was fine. Terri would often come out with my roommate and me on weekends because her husband Michael worked very late being in the restaurant business. That night Terri said she was going home to wait for Michael - they had been fighting and she was going to wait for him to get home.
I got a phone call from my father in the middle of the night. He said something happened to Terri and told me go to over to her apartment – we lived in the same apartment complex. When I got there Terri was lying on the ground. I leaned down and I could still hear her breathing although it was labored. I wasn’t very concerned because I had just seen her earlier; I thought perhaps she had just fainted or passed out. I remember shaking her shoulder but she was unresponsive. It was just then that the paramedics got there and I knew immediately something was seriously wrong. They used defibrillators attempting to get her heart started maybe half-a-dozen or more times.
As a result of her collapse and being deprived of oxygen, Terri suffered a profound brain injury. From that point on she became dependant on others for her care. Initially, she was in a coma and was hooked up to all types of machines, and her doctors didn’t know if she was going to live or die. I remember Terri’s prognosis as being very grim, but in a relatively short amount of time she emerged from her coma and was no longer dependent on any machines. However, because of her brain injury, she had difficulty swallowing and therefore needed a feeding tube (which was how Terri was fed up until it was removed by court order in 2005, causing her to die by dehydration and starvation). Nevertheless, our family was well prepared to care for Terri in the condition she was in.
What remains so frustrating for our family is the confusion that still exists about Terri’s condition. Terri was not on any machines that were keeping her alive. And there is still the perception that she was dying, that she had a terminal disease. This was also not true. The brain injury was never going to cause Terri’s death. In fact, her autopsy revealed that Terri was in good shape physically, relatively speaking. All her organs were healthy and she could have very well lived a normal life span.
In 1993, a rift occurred between Michael and our family. Michael was appointed Terri’s guardian and therefore had absolute control in regards to her care. He would not permit our family access to Terri’s medical records and never disclosed any information to us about Terri or her care. He also stopped all rehabilitation and therapy. As a result, our visits with my sister were the only stimulation she was receiving.
Then in 1997 we received a letter from Michael’s attorney that they were going to start procedures to remove her feeding tube. The only thing we were able to do was get an attorney and fight. In the state of Florida to end someone like Terri’s life you have to prove that they are in a Persistent Vegetative State (PVS) and also prove they want to die. This can be either in written form or hearsay evidence.
In Terri’s case it was hearsay evidence based on what Michael claimed that Terri made verbal wishes that if she ever became disabled she wouldn’t want to live in that condition. It was a total shock to us when these so-called wishes surfaced.
And the PVS diagnosis that was used is also troubling because it is unscientific and a completely subjective diagnosis, left to the discretion of the doctor who is examining the person. Moreover, because Michael was the guardian, he made it extremely difficult for any of our selected doctors to be permitted to examine Terri.
The petition to remove Terri’s feeding tube went to trial in January 2000. Just prior to the hearing, a guardian ad litem (GAL) was appointed by the court and was asked to investigate the merits of Michael’s petition. He conducted a near 6-month extensive investigation. The GAL interviewed my family, Michael and others. His findings were that Terri’s feeding tube should not be removed. Despite the GAL's recommendation, the trial judge ruled to remove Terri’s feeding tube.
It seems to me that Terri’s case illustrates how our culture wants to try and eliminate suffering and will use suffering to justify this type of killing. Because the one question our family gets asked all the time is: who would want to live in a condition like Terri? It’s a question that’s in all our minds I’m sure. The answer I give is that nobody would choose to live with a disability if they had the choice. And I’m sure Terri would not have wanted to live with a brain injury if she had been given the choice. But there are tens of thousands of people living with conditions like Terri’s -– even worse.

So the question is what are we going to do to care for them? If we continue to rationalize and give reasons why Terri should have died, then why are we caring for anyone like this? Why not kill them all? That’s what it’s coming down to. Because if we don’t understand that this is about us as a nation, and if we can't look at Terri and understand that she represents all of those in similar conditions, needing only our love and compassion then it’s not safe for anybody. If we continue to do what we are really doing – abandoning them and looking at them as “burdens,” and believing it is better off to kill –- then where does it stop?
Sadly, I believe that much of this growing prejudice that exists towards Terri and other cognitively disabled people comes from the secular media. Look at how my sister’s case was and continues to be constantly misrepresented; desensitizing the general public to accept what happened. For example, Terri’s case continues to be referred to as an “end of life” issue. It was not. As I said, Terri was never dying. Even more disturbing is how the media still refers to Terri as being “brain dead” or a “living corpse”. This is medically inaccurate Yet, these terms are used repeatedly and I have reputable journalists on the record saying they would not correct what they wrote.. I could go on.
What I’ve learned from the whole experience is how persons like Terri can truly allow human beings to express unconditional love because they are completely dependent on us for that love and care. Again, we are not talking about persons that are close to death. These are persons very much alive and receiving basic care – food and water – even if it was through a feeding tube. Nevertheless, it is basic care, and in these situations I believe that we are morally obligated to care for them.
Despite Terri’s horrible death, our family has been filled with countless blessings. Something we could never have predicted are the emails, cards and phone calls we continue to receive letting us know how she has impacted their lives in some way. This is not to mention Terri’s Foundation, the foundation our family established in Terri’s honor. Not only are we educating the general public, trying to counter much of the prejudice and confusion that exists on this issue, but more importantly is being able help other families that are going through similar situations.
Personally, I feel I have to correct all the lies about Terri. However, what keeps us going is helping other families that are suffering the same way we all suffered. Because of Terri, they’re now fighting to keep their loved ones alive; questioning the medical community when they suggest their loved one's life should be ended. However, they don’t have the voice our family had. We hope to be that voice for them – for some we have. All of this because of my beautiful sister – she continues to help save the lives of others and I am constantly reminded of the headline saying that Terri was, “the face that changed a nation.” 

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