A Visit With Terri Schiavo by Attorney Barbara Weller
This past Christmas Eve day, 2004, I went to visit Terri Schiavo with her parents, Bob and Mary Schindler, her sister, her niece, and Attorney David Gibbs III. The visit took place at the Woodside Hospice for about 45 minutes just before noon.
When I knew I was going to visit Terri with her parents, I had no idea what to expect. I was prepared for the possibility that the Schindlers love their daughter and sister so much that they might imagine behaviors by Terri that aren’t actually evident to others. The media and Mr. Schiavo clearly give the impression that Terri is in a coma or comatose state and engages only in non-purposeful and reflexive movements and responses. I am a mother and a grandmother, as well as one of the Schindlers’ attorneys, and I could understand how parents might imagine behavior and purposeful activity that is not really there. I was prepared to be as objective as I could be during this visit and not to be disappointed at anything I saw or experienced.
I was truly surprised at what I saw from the moment we entered the little room where Terri is confined. The room is a little wider than the width of two single beds and about as long as the average bedroom, with plenty of room for us to stand at the foot of her bed. Terri is on the first floor and there is a lovely view to the outside grounds of the facility. The room is entered by a short hallway, however, and there is no way for Terri to see out into the hallway or for anyone in the hallway to observe Terri.
From the moment we entered the room, my impression was that Terri was very purposeful and interactive and she seemed very curious about the presence of obvious strangers in her room. Terri was not in bed, but was in her chair, which has a lounge chair appearance and elevates her head at about a 30-degree angle. She was dressed and washed, her hair combed, and she was covered with a holiday blanket. There were no tubes of any kind attached to her body. She was completely free of any restraints that would have indicated any type of artificial life support. Not even her feeding tube was attached and functioning when we entered, as she is not fed 24 hours a day.
The thing that surprised me the most about Terri as I took my turn to greet her by the side of her chair was how beautiful she is. I would have expected to see someone with a sallow and gray complexion and a sick looking countenance. Instead, I saw a very pretty woman with a peaches and cream complexion and a lovely smile, which she even politely extended to me as I introduced myself to her. I was amazed that someone who had not been outside for so many years and who received such minimal health care could look so beautiful. She appeared to have an inner light radiating from her face. I was truly taken aback by her beauty, particularly under the adverse circumstances in which she has found herself for so many years.
Terri’s parents, sister, and niece went immediately to greet Terri when we entered the room and stood in turn directly beside her head, stroking her face, kissing her and talking quietly with her. When she heard their voices, and particularly her mother’s voice, Terri instantly turned her head towards them and smiled. Terri established eye contact with her family, particularly with her mother, who spent the most time with her during our visit. It was obvious that she recognized the voices in the room with the exception of one. Although her mother was talking to her at the time, she obviously had heard a new voice and exhibited a curious demeanor. Attorney Gibbs was having a conversation near the door with Terri’s sister. His voice is very deep and resonant and Terri obviously picked it up. Her eyes widened as if to say, “What’s that new sound I hear?” She scanned the room with her eyes, even turning her head in his direction, until she found Attorney Gibbs and the location of the new voice and her eyes rested momentarily in his direction. She then returned to interacting with her mother.
When her mother was close to her, Terri’s whole face lit up. She smiled. She looked directly at her mother and she made all sorts of happy sounds. When her mother talked to her, Terri was quiet and obviously listening. When she stopped, Terri started vocalizing. The vocalizations seemed to be a pattern, not merely random or reflexive at all. There is definitely a pattern of Terri having a conversation with her mother as best she can manage. Initially, she used the vocalization of “uh’uh” but without seeming to mean it as a way of saying “no”, just as a repeated speech pattern. She then began to make purposeful grunts in response to her mother’s conversation. She made the same sorts of sound with her father and sister, but not to the same extent or as delightedly as with her mother. She made no verbal response to her niece or to Attorney Gibbs and myself, but she did appear to pay attention to our words to her.
The whole experience was rather moving. Terri definitely has a personality. Her whole demeanor definitely changes when her mother speaks with her. She lights up and appears to be delighted at the interaction. She has an entirely different reaction to her father who jokes with her and has several standing jokes that he uses when he enters and exits her presence. She appears to merely “tolerate” her father, as a child does when she says “stop” but really means, “this is fun.” When her father greets her, he always does the same thing. He says, “here comes the hug” and hugs her. He then says, “you know what’s coming next—the kiss.” Her father has a scratchy mustache and both times when he went through this little joke routine with her, she laughed in a way she did not do with anyone else. When her father is ready to plant the kiss on her cheek, she immediately makes a face her family calls the “lemon face.” She puckers her lips, screws up her whole face, and turns away from him, as if making ready for the scratchy assault on her cheek that she knows is coming. She did the exact same thing both times that her father initiated this little routine joke between the two of them.
The interactions with her family and our appearance in her room appeared to require some effort and exertion from Terri. From time to time, she would close her eyes as if to rest. This happened primarily when no one was paying particular attention to her, but we were talking among ourselves. After a few minutes or when one of the visitors approached her and started to talk directly to her again, Terri would open her eyes and begin her grunting sounds again in response to their conversations. Although I approached her, leaned close and stroked her arms and spoke to her, she did not verbally respond to me.
Terri’s hands are curled up around little soft cylinders that help her not to injure herself. I understand that these contractures are likely very painful, although there was a time when Terri was receiving simple motion therapy when her hands and arms relaxed and were no longer as constricted. When the therapy was discontinued by order of her guardian and the court, the contractures returned. These contractures would apparently be avoidable if Terri were given the simple range of motion therapy she previously received. It is very sad to observe firsthand these conditions that make her life more difficult, but that would be correctable with little effort.
When we were preparing to leave, the interactions with Terri changed. First, she went through the joke routine with her father and the “lemon face.” When her niece said goodbye to her, Terri did not react. Nor did she react to me or to Attorney Gibbs when we said our goodbyes to her. When her sister went to her to say goodbye, Terri’s verbalizations changed dramatically. Instead of the happy grunting and “uh uh” sounds she had been making throughout the visit, her verbalizations at these goodbyes changed to a very low and different sound that appeared to come from deep in her throat and was almost like a growl.
She first made the sound when her sister said goodbye and then, amazingly to me, she made exactly the same sound when her mother said goodbye to her. It seemed Terri was visibly upset that they were leaving. She almost appeared to be trying to cling to them, although this impression came only from her changed facial expression and sounds, since her hands cannot move. It appeared like she did not want to be alone and knew they were leaving. It was definitely apparent in the short time I was there that her emotions changed—it was apparent when she was happy and enjoying herself, when she was amused, when she was resting from her exertion to communicate, and when she was sad at her guests leaving. It was readily apparent and surprising that her mood changed so often in a short 45-minute visit.
I was pleasantly surprised to observe Terri’s purposeful and varied behaviors with the various members of her family and with Attorney Gibbs and myself. I never imagined Terri would be so active, curious, and purposeful. She watched people intently, obviously was attempting to communicate with each one in various ways and with various facial expressions and sounds. She was definitely not in a coma, not even close. This visit certainly shed more light for me on why the Schindlers are fighting so hard to protect her, to get her medical care and rehabilitative assistance, and to spend all they have to protect her life.
I realize that Terri has good days and bad days. There are obviously days when she does not interact with her family, as they had previously told us. There are also apparently days when Terri is even more interactive and responsive to them than she was on the day I visited. Since this visit I am more convinced than ever that the Schindlers are not just parents who refuse to let go of their daughter. There really is a lot going on with their daughter and potentially, it seemed obvious to me, Terri could improve even more with appropriate care and 24 hour a day love that can only come from a dedicated family. As I watched her, my foremost thought was that on the next day, Christmas, Terri should not have been confined to her small room in a hospice center, nice as that room was, but that she should have been gathered around the Christmas dinner table enjoying the holiday with her family.
The Terri Schindler-Schiavo Foundation is the official organization responsible for speaking on behalf of the Schindler family. For more information and background on the case, visit the foundation’s website at www.terrisfight.net.