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A sister tends to a life that cultivates her fighting spirit

By MARY JO MELONE
Published October 9, 2003

At first, I could not imagine the life that Amelia Sklar leads.

For most of it, she has cared for her younger brother. Johnny D'Aiello, 53, has cerebral palsy. CP is the result of damage to the brain that occurs before, during or soon after birth and that affects how a person can control his body. Often, people with CP are also mentally disabled.

We met this week at Independent Life-Skills Pathways, a small school for disabled adults that is housed in a couple of crowded rooms in an office strip center in Largo. Johnny attends daily. He is taught how to handle money, how to make toast.

He cannot stand, speak or hear. His teacher used sign language, and an occasional word - Johnny reads lips - to introduce me to him.

"Mary," said the teacher, Birgit Wilhelm.

Johnny responded with a low, distorted sound, but the MMMM and rrr were in there. Suddenly, his sister jumped up, rushed to him, and planted a big smooch on his face. It is such a simple thing, the noise one consonant makes. But in the world occupied by Sklar and her brother, the leap is cosmic. He had never before uttered the sound of "r."

She believes he would be in a nursing home without her. She would suffer her own loss. She loves no one the way she loves Johnny. He is the source of her life's work. She is an advocate for the disabled.

Sklar is assisting Terri Schiavo's parents, as they head to federal court Friday to continue the fight to keep her alive.

Sklar is the perfect person to be in the foxhole. She puts no trust in doctors. Too many of them would have had Johnny institutionalized. Too many, she said, believed that "there's no hope, there's no sense, he's like a vegetable ... you might as well lock him in a closet and hang him up like a suit."

Words like these lead Sklar to see a parallel in Terri Schiavo's case. Her brother has slowly improved over the years with physical and occupational therapy, much of which she did by herself. If it worked for Johnny, she thinks it might work for Schiavo - if only somebody tried.

That's the way Sklar thinks. Hope is the thread that runs through her life. Every day she looks at her brother and sees a miracle. There have been so many miracles already. Maybe there is a miracle coming for Terri Schiavo.

Could there be?

I checked with a neurologist, Dr. Selim R. Benbadis, an associate professor at USF. I wanted to know if there was an accurate comparison to be made between Johnny D'Aiello and Schiavo. The doctor said no.

People with cerebral palsy are able on some level to interact with the world, and can learn through therapy, Benbadis said, while somebody like Schiavo cannot. She can't because she has no cerebral cortex, the major portion of the brain, left. She has no way to connect with the world.

When I told her what the doctor said, Amelia Sklar wouldn't buy a word of it.

She remembers her brother's first words - among them, "baseball."

She remembers the moment, when he was a teenager, when he finally went off baby food.

She remembers giving him his first cigarette, his first beer, how much he enjoyed them.

Johnny D'Aiello has lived with his sister through all three of her marriages, including the one to a man who called Johnny an ape. But now he feeds himself, dresses himself, lives in his own rooms in Sklar's home.

Just as she has changed her brother, he has changed her. The years of fighting doctors have produced a woman who is independent, skeptical, proud. Backing down doesn't appear to be in her repertoire.

I sought out Sklar because I wanted to get a sense of what it's like to be on the other side of the argument involving Terri Schiavo. I expected to find in Amelia Sklar somebody overburdened by the job that life has handed her. My view of what should happen to Terri Schiavo has not changed. I think her husband has the right to let her go. But otherwise I was wrong. In Amelia Sklar I met a woman profoundly shaped by her life's challenges, a woman who has turned the test of her existence into a continuing act of love.

- You can reach Mary Jo Melone at mjmelone@sptimes.com or 813 226-3402.

[Last modified October 9, 2003, 02:18:51]


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