Q - You also tell of Rusty’s shocking misdiagnosis and medical mismanagement - about doctor’s mistakes. What’s that all about?

A - In truth the doctors did make mistakes with Rusty - some very big mistakes. But it wasn’t so much a shocking misdiagnosis as it was a misdiagnosis with shocking consequences. The diagnosis was that Rusty was paranoid schizophrenic. And because of that diagnosis, because of that label, Rusty was committed to a state mental hospital on and off for over four years. But the doctors were wrong. What Rusty really had was epilepsy. And because they were unable to see that, she was locked up at the age of fifteen and prevented from living a reasonably normal life.

Q - But that must have been a long time ago. People aren’t locked up by mistake anymore, are they?

A - Actually, it wasn’t so long ago. It was in the late sixties, early seventies. And because of the complicated nature of epilepsy and the confusion over what mental illness is, I wouldn’t hesitate to say that I’m certain it’s still happening in some cases today.

Q - With all the advancements we’ve made in medical technology and science, how can that be?

A - Most people associate epilepsy with generalized convulsions or fits but there are over twenty kinds of “seizures.” Some of them cause sensory distortions - voices no one else can hear, visions, emotions and sensations that are subjectively experienced but not outwardly observable. Even some automatic or bizarre behavior. In fact, because epilepsy is an abnormal discharge of electricity in the brain, anything that the brain controls can be affected. And machines aren’t as sophisticated as our brains and so sometimes they can’t pick it up.

Q - So how can one tell the difference between certain kinds of epilepsy and mental illness?

A - Epilepsy is a physical disorder. Now, especially, we have more sophisticated machines that can measure brainwave patterns. So a proper diagnosis is very important for proper treatment. Epilepsy is also intermittent. After a short period, the person with epilepsy begins to act quite normal again. It’s different with mental illness but in difficult cases it takes a good doctor to be able to see that difference. And it’s extremely important. Because diagnosis and labeling are sometimes more dangerous than the illness itself.

Q - Can you explain that?

A - Well to diagnose Rusty as mentally ill meant that the treatment for her illness was psychiatric drugs and committment. It meant putting a perfectly sane person in an environment which challenged her sanity. Where drugs and restraints were used to suppress the most normal reactions. If Rusty had been properly diagnosed by a good neurologist, her treatment would have been emotional support and anticonvulsant medication. Single, monitored medication.

There are over two million people in America alone who have epilepsy and today most of them - if properly treated - can live normal lives.

Q - Often in your book, Rusty’s Story, you talk about prejudice and ignorance causing more problems than the illness itself. Is that true?

A - Most people are frightened by epilepsy. It’s scary to see a person fall on the floor out of control. We feel impotent and often don’t know what to do even if we want to help. In a “grand mal” or generalized seizure there’s really not much that needs to be done. Only placing something under the head of the person in seizure is really necessary. The use of tongue blades to keep the person from biting his/her tongue isn’t a necessity any longer. The muscles of the tongue hold it up and out of the way most of the time.

When Rusty had seizures, my five year old, Jeremy used to stay with her all the time. He was never afraid. That’s because he was exposed to the situation before he was exposed to the prejudice. His concern was that Rusty was hurting herself. But consciousness is gone then. She explained she didn’t feel anything. Only embarrassment at waking up surrounded by people who were looking frightened by her. Anything unknown is frightening and human beings usually react to fear by fight or flight. And prejudice is a way of protecting oneself from fear and the unknown.

One thing that surprised me, though it shouldn’t have, was that many doctors had the same response. They were frightened and therefore treated Rusty by locking her away… or by refusing to treat her properly. Ignorance and fear kept her out of school, separated her from her peers, made it hard for her to get a job, made her parents ashamed… and took several years of Rusty’s life.

Q - What motivated you to want to help Rusty?

A - As a nurse, one of the oaths I had sworn was to do no harm. Nursing and medicine might not always be able to help but it was that “do no harm” business that upset me. I was a true believer in medicine then. And when I heard Rusty’s story, I felt like some medieval nun who had joined the church because of her belief in Good and God and had just heard about the Inquisition. My idea of Justice was threatened; my faith had been challenged.

Also, it wasn’t as altruistic as it seemed. Rusty was very much like me, according to the way I looked at it. Anyone can get epilepsy… one small clunk on the head can sometimes do it. And if a system could do it to her, could lock her up because of an illness that was beyond her control, then what would stop it from happening to me? What would keep them from locking me up?

Q - Rusty’s Story is a book with a message. What is that message?

A - In all my years of nursing I’ve learned a lot about limits. The limits of medicine. the limits of science and technology. The limits of even the greatest minds.

But I’ve also learned that human beings, each and every one of us, is capable of adeep and limitless knowledge, an understanding that can achieve what we call miracles.

When I met Rusty, I had the feeling that she was someone special. It was that feeling, that knowledge that I trusted. And once she had told me her story, once I was open enough to really hear her, I knew she had gotten caught in a bureaucratic system which had mislabeled her. I knew no matter how many professionals had said it, that Rusty wasn’t crazy. That she was as sane, or saner than I was. When Rusty realized how much I believed in her, she knew she would never again have to fight the system alone. Together we were unbeatable.

So part of the message is that each one of us is essential - not only to ourselves but to others in our world. And that if we care enough, we can change the things in the world that must be changed. But we can’t just do it with intellect.

One of the hero doctors in my book, Dr Nelson had told me, “Remember Carol, the mind can only look. The heart can sometimes see.” And when it does, it always sees the sameness among people but it also appreciates the differences.

And it’s that vision. my heart’s vision, that I want to share.

Order Now